All this healing is exhausting.....

The first week of radio has left me exhausted. They say you get tired because your body is using its energy to heal any damaged good cells. I must be doing some serious healing then! Either that or they've pointed it at the totally wrong place! 

I've been wrecked all weekend but am continuing to make myself push through. I know I need rest, but lying about all day is the worst thing I could ever do physically and mentally. I'm trying to do what I did when I returned home after surgery...... I'm acknowledging that I need rest so I'm taking my time doing things. A bit like my dog (a rescue lurcher, part greyhound; likes short bursts of energy followed by a wee lie down). I go for a quick walk with hubby and the dog in the morning, and then a longer one in the evening. This weekend I've had a couple of longer ones too - a beach walk yesterday and a forest walk today. Once it hits 4pm I'm basically fighting to stay awake, so after dinner I go to bed. I don't sleep at that time though..... I just rest and relax. I'll chat to people via texts/whatsapp etc, maybe watch a bit of tv and read a book. Eightsies are usually a bit of brown toast with peanut butter and tea followed by an apple. Then I read until 9. I'm out for the count very quickly so am generally getting around 10 hours sleep, though I'm always awake a bit before the alarm. Lots of healing time. I'm particularly tired today but I suspect this may be partially due to another amazing reiki/reflexology/visual meditation session yesterday, plus a longer than usual walk this afternoon with a good friend..... I'm so chilled out I suspect I could've slept from 5pm right through..... not that I would!! It's ok to need sleep for healing, but it's not ok to start sleeping the clock round. That'll only make me feel worse and I need to stay as physically and mentally strong as I can. Food and exercise are big contributors to maintaining that, so I'm continuing to eat like a marathon runner and exercise like a tortoise!

I'm mildly concerned my blog has stopped being funny..... it's become like a 'this is what I did today'..... doesn't tend to be hilarious! Generally I'm still pretty funny..... or maybe I've always just thought I was....Either way, laughter still remains a great medicine (along with whatever my reiki master is doing..... I'm quite convinced she's performing miracles!)  So please accept my apologies for getting a bit boring and not being my usual, witty self. I'll try to up my game...... 

Here's one I don't think I've told yet and it's a true story, which are always the funniest...... Do you know that the Neuro Ward in RVH is on level 4 and that when you get into the lift the button for level 4 is the only one that doesn't light up when you press it? Seems a little cruel...... As if people with brain issues aren't confused enough, now we get to press a button repeatedly and wonder if it's just us.....!  

Yes, yes, I accept I probably need to up my game a bit higher...... I'll try..... leave it with me.......

I'll finish with a wee burst of optimism, as that's always important! I'm now counting down my radio sessions by interspersing little rewards...... I've 3 visits from my sister, two of which include stays in a Belfast hotel so I won't have to travel the Frocess those days. I've also just booked a stay in a lovely B&B in Donegal for the Saturday after I finish my last radio treatment. Due to the bank holidays, I'll finish on a Tuesday, so now I've got a Saturday night away to look forward to after that. It looks lovely; family run, relaxed, right in the middle of nature. Plenty of walks, but not too strenuous...... rambles rather than hikes. Perfect way to recharge. I can't wait to get back on that upward trajectory again. I'd really just recovered from surgery when radio started so it'll be really nice to make some progress that might last..... Gah, listen to me being totally unfunny again....! I promise I do laugh every single day and I make really bad jokes when up for treatment...... still me! 

Xxx

Week 1..... tick!!

At the start of the week I was very doubtful I could do 6 weeks of radio..... That sounds weak and a bit snivelly, but it's the truth. My sister and hubby got me through the first 4 days....... If I'd been on my own I wouldn't have gone. Despite what they tell you about it being 2 weeks before side effects kick in, this is complete nonsense. Well, it is for me. From day 1, immediately after treatment I feel dizzy, have a thumping headache, am over sensitised particularly to noise, and often feel a bit nauseous. It's been the same every day. I can hardly open my eyes after. I force myself to go for walks and stay awake so I can sleep at night..... 'one, two, Freddie's coming for you.....'........ I was so relieved yesterday to have someone believe me and acknowledge that everyone is different and that she often sees people who find the first week the hardest. I'm not expecting this to get easier, but I know how I feel and it's frightening and unfair when you don't quite follow the text book version of what should happen. Thankfully my sis and hubby pulled me through the first 4 days, and today I managed to fly solo...... I went up on hospital transport and was treated and on my way home within half an hour! 

The transport was grand. Turns out the driver and I had quite a few people in common and a shared love of music, so we had plenty to chat about. My fellow passengers included a man going for dialysis...... deeply unimpressed and of the firm belief that medical professionals are making him worse. I can understand where that attitude would come from that if I'm honest...... I'm the girl who's threatened to run away and not take any more treatment on at least five occasions. Ultimately I'm not stupid though. As hard as the treatment is, it's being done for a reason. I also strongly believe I can help myself with a positive attitude and strength of character. I don't manage it all the time, but I always pull it back with the help of those around me. Anyway, he grumbled but he was in the bus and he went into the hospital. Good for him. My other busmate was a somewhat quieter older lady. Going to get a scan done and pretty unphased by the whole thing. 

I'd started the day with what I thought I'd thought was the start of a panic attack, but a check of my blood sugars showed a reading of 2.2.......far too low. The symptoms are similar to anxiety. Thankfully I was able to get them up quickly with some glucose tablets and toast with jam. The steroids I'm on are supposed to raise blood sugars but mine have dropped to dangerous levels around four times........ always when I wake up in the morning. I asked for a kit to check them myself, which I do every morning and before I go to sleep. Generally they're very predictable, but the odd time they go a bit screwy. It's fairly alarming, but I know what to do so I can self manage it........ and we all know I like to be in some degree of control!

After radio today I had much the same side effects, but felt amazing because that's a week done!! A big milestone reached. It flew in and the next 5 will do the same. I still get so much strength from the other patients. We're all there, doing it! I want to growl at the waiting room..... a great big,fist clenched, 'gggggrrrrrrr' round every person seated there. Someday I might.... and I've little doubt that some will do it back! 

I was home in no time. Feeling pretty bad, but just relaxing and basking in the success of getting one week under my belt and looking forward to a long weekend off. On Tuesday I'll ride back into battle, knowing I'm more than capable and that it's a short week. 

Gggggggrrrrrrr xxxx

The Building of Strength....

I've had my Ward of Winners and now I have the Building of Strength. The Cancer Centre is a place that nobody ever wants to be in. A frightening place. Yet it's a place where people are so quick to share a smile, or a chat. A place where strangers will comfort anyone who's upset. Everyone there has a story and there is so much strength and compassion in that building. There is a sense of camaraderie that can only come from people who are going through a terrible time. The nurses are lovely and patients resilient and strong. I wish I didn't have to go there, but yet again I feel honoured to see the genuine goodness of humanity. 

Today I met a woman who has just been diagnosed with breast cancer and is waiting to hear if she'll have radio or chemo. She was so strong and a very warm person. We've introduced ourselves and I hope to see her again. I also saw my former Ward mate again. I never fail to take courage from seeing her face. We're both doing this. Together. Our journeys remain different in some ways, but giving her a hug every day warms my heart and reminds me that we are both strong and more than capable of this latest challenge.

I also spent some time with a medical professional today who was fantastic. A warm, special person. She took time with me and talked to me about all sorts of things. I told her that everyone tells me side effects won't kick in until 2 weeks into treatment, but that I had felt them very strongly from the first day. Ive had thumping headaches, dizziness and often complete sensory overload (where every noise, light or touch can be too much for me). Instead of dismissing me, she said that she's seen many people who've found the first week of radio to be the worst. That was really good for me to hear. Cancer is awful no matter where it is, but the location of mine can make me doubt my own mind. I know medical professionals do too. I find that very frustrating, particularly as someone who was always so strong willed and knew my own mind. I'm not making the headaches and dizziness up; of that I'm 100% confident. But my body and mind have done some pretty rare things this past few months, so you do start to question whether the radio is causing these things, or if there's something else going on either physically or mentally. To have a professional who works with radio patients all the time tell me other patients have experienced the same (the majority of whom will have cancer elsewhere) was reassuring. If made me feel believed and I was able to trust myself a bit again. I know my own body. I know when things change. I've barely had a headache throughout this whole thing..... immediately after radio I had a pounding one, and that's been the same every day when I come off that machine. Of course stress often plays a part, but truthfully lying down getting zapped is the most relaxing part of my day! If I thought about what they were doing and why I'd be out of that machine in two seconds..... so I'm forced to take my mind somewhere else. I'm forced to relax. I lie back and I think about my relaxation/yoga breathing and my reiki relaxation. I concentrate on each part of my body from my feet up, relaxing each muscle in turn. I take a mental walk through a forest. I breathe deeply and just relax. I literally imagine the bad cells leaving my body through the top of my head. I only think good thoughts. Time spent with people I love. That's it. Only good stuff. And I relax. I'm obviously relieved when they tell me I'm done, but I'm not panicked during the treatment itself at all. Truthfully it's the journey up and back that's the worst bit. It's so long and coming home I usually feel pretty zonked. When I get home I have to be very careful about the sensory overload..... it can be pretty unbearable. Like my brain is just getting too many messages. I want to lie in a darkened room. So now I just relax. I read a book and get an early night. Last night I was asleep at 9pm. I hope to do much the same tonight.

Tomorrow is a big day...... the end of week 1. With the help of family I have set some milestones. The end of the first week is one. Plus it's a long weekend so the whole house is off on Monday, which will no doubt mean extra beach walks. The following weekend sees another visit from my sister. The boys are away to another gig in Dublin - again planned s long time ago and something we were all supposed to do together. Hearing and seeing Iron Maiden live would be well beyond my capabilities at the moment and truthfully I can think of nothing worse! But the boys going means everyone gets a break and I get more sister time. She has very cleverly scheduled in some visits over the weeks after that..... the plan being that she will take me to radio on a Monday and then we'll stay in a nice hotel in Belfast that night before radio again the next day. What she's done is break up my treatment with little happy things. Milestones and things to look forward to. Very clever and very appreciated. 

So tomorrow is my first time going up on hospital transport on my own. A good friend did offer me a lift, but I have to tackle lone attendance at some point and I figured it was better to do that on a Friday than to have it hanging over me for a new week. The transport was fine anyway. A long day but really nice driver and some decent busmates! In yet more signs, the driver was singing Hall and Oates yesterday so I knew he'd been sent especially for me...... So I go into tomorrow remembering it marks the end of the first week. Another big achievement and step in the right direction. 

Plus I've got reiki/reflexology/visual meditation on Saturday again, so I can't wait to feel that unbelievable sense of relaxation and calm again. I wish I'd taken time to do stuff like that before. To those of you who work, take it from me..... always make time for some proper relaxation. We all say we will but then we don't. You don't want to be forced into it like I have been. Look after yourself. 

I am completely grateful to the medical professionals who saved my life and continue to do so, but ultimately I genuinely believe there is much only we can do for ourselves.

“One must not forget that recovery is brought about not by the physician, but by the sick man himself. He heals himself, by his own power, exactly as he walks by means of his own power, or eats, or thinks, breathes or sleeps.” » Georg Groddeck

Two done!

Today started badly again...... I woke up really early in a panic attack. It wasn't as bad as yesterday, but it was horrible anyway. I was determined I wasn't allowing it to happen again and I fought it really hard. It's not an easy thing to do. By the time I was in the shower with my cheesy music playing, I was on my way out of the worst of it. When my sister arrived we went for a walk. Again, all helping to reduce my anxiety.

By the time we got to Belfast I was undoubtedly settled and actually managed not to cry when pulling into the car park (an unusual occurrence for sure!) Once we got in we decided to do some positive things.... take a bit of control...... I needed to find out a bit more about the hospital transport that I'll be taking, and we also went to the Macmillan Centre to find out a bit more about what they offer. It was a lovely, welcoming place and there are always people there to chat. Chatting helps me...... the social contact that has been so important to me from the start of this. Not seeing people or getting a laugh always leads to my worst times. It's good to know there's somewhere I can go if no-one can meet me for a cuppa a day. We also met one of my former ward mates and her mum. That was lovely. I'm very fond of both of them...... what we're going through creates a fairly unique bond, and it's nice to be able to encourage and motivate each other. She looks great and is an inspiration as she powers through treatment. Reminds me I can do it too.

The time passed so quickly that I didn't have any time to get myself into a state. The nurses who took me for treatment were lovely and it was done in no time at all. Afterwards I felt woozy again. Tired and a bit dizzy. Just a bit out of it. I have a couple of 'hot' bits on my head too. Nothing awful but I know where the laser has touched my wound, without a doubt! I'd say that'll get worse, but I can manage that. It's nowhere near as bad feeling as the wooziness. I'll lose patches of hair too, but I'll deal with all that if and when it happens. During dinner I had an absence seizure that was very distinct..... started with a strong taste and then numbness/tingling down my left hand side. I was able to tell my husband and sister what was happening though, and they talked me through it. It's the first really strong one I've had for a while but it was over in less than a minute. I learnt to deal with them before so it was just a case of staying calm and remembering what I do (flexing hand and foot, telling people what's going on, remembering it'll be over in under a minute). 

Hubby reminded me this evening that I go in cycles...... I have a few bad days but then always learn to deal with whatever has happened and then I'm strong again. He's not far wrong. My wobbles are often associated with a change..... I never was great with that!! I'm continuing to work on trying to get myself into a constantly more laid back state.... it's hard when you're naturally fairly highly strung. I'm hoping to get back to my reflexology/reiki miracle worker, as she had me in a more relaxed state than I've ever been in in my life! I think the trick is to train yourself to be calmer and then eventually it'll just come naturally. I'm doing this with music, walking, reiki/reflexology and chatting with people. It'll come.

Tomorrow I'm getting the hospital transport for the first time..... I have to be ready for 8am which could be quite a challenge! Although maybe not a bad thing...... if I have to be up and organised then I've no time to sit about getting myself into a mess. Plus my sister is going on the minibus with me tomorrow. A great plan of hers! That allows me to try it in a safe and reassured way the first time. Hubby's taking me on Thursday and then I'll have one day of going on transport on my own on Friday. A good friend offered me a lift but I declined it as I think it's better to have my first trip up on my own on a Friday. Means I can remind myself it's only one day and then it's the weekend. I'm not up on Monday so a shorter week next week too. 

Each day I go up is a day closer to the end of radiotherapy. A day closer to finishing this treatment stage. Then I can start to rebuild and make progress again...... which I know I can do, because I've done it before. One step at a time. Xxx

1 down, 29 to go!

First day of radio today. I'd love to say I was a brave hero who charged into battle, completely unphased. I actually wasn't particularly scared about the treatment itself. I'd been assured it doesn't hurt and really all I have to do is lie there. Ok, so there's a mask on your face, but it's not overly uncomfortable and you can breathe with no issues. Part of me was glad to get it started - sooner it's started, sooner it's over, right?? Subconsciously though my mind appeared to be thinking other things.... I woke up in the early hours having a terrible nightmare about my son. Any mother will know that nightmares about your children are the worst type. I was sweating, my heart pounding, extremely anxious. When the alarm eventually went off I was in a total state. I worked my way through the horrors as ever, but it wasn't a good start. My sister was here to take me to the hospital, which was great. Unfortunately there's so much build up to these big milestones...... sleeping the night before, getting ready, waiting to go, the long journey up and then waiting to be called. I was a mess. I just kept crying. Uncontrollably. Some lovely people talked to me in the coffee shop; asking if I was ok and telling me not to worry. I shared a laugh with them but then went back to more tears. 

Eventually I was called and went in with some lovely nurses who talked to me about the treatment etc. At this point I'd had a bit of an internal gggrrrr to myself and was ready for action. The treatment started and it was genuinely no big deal. It doesn't hurt and doesn't last long at all. All I have to do is lie there and be still. I didn't think about what was going on, I just breathed deeply and reminded myself it'd be over in no time at all. Which it was. Plus it's fairly easy to stay still when you're brain is being zapped..... moving could be the worst novebyou ever made!! I kept thinking back to the James Bond film where the laser was cutting up the table, between his legs...... getting dangerously close to the bit of his body that he generally thinks with!! Nope, this is not the time to get jumpy.

Afterwards I felt woozy and tired. I didn't like that and it led to more tears. Then the tears led to even more tears...... what's wrong with me?? I'm not like this! Vicious circle. I cried on and off for the rest of the day and continue to do so now. I think I've had a record four panic attacks and still feel anxious now. I'm angry with myself for feeling like that...... hence making it worse. I've been for a walk, had dinner and am now trying to just relax. I've been remembering back to my reflexology/reiki session and that has helped, but the nerves are sitting in my chest.

The reality is that I need to manage this. No-one else can do it for me. I can listen to advice but only I can take control of my own anxiety. It's not the person I'm used to being, making it all spiral. But 'strong, in control' Trish is still there..... I just need to be confident enough to remember who she is. And then I need her to push her way to the forefront again. 

The next 6 weeks are going to be bad. There's no buttering it up. But I've had months of bad stuff. I remain completely adamant that I'm lucky than many. I have a treatment plan. This can be managed. I can get my life back. In the meantime I need to learn how to relax and not worry about the things I can't change. Whatever's going on with me physically is going to happen regardless. Why would I worry myself into complete misery over it?? There's no point. Nobody wants to see me snivelling and it's not me. 

On the bright side (and there is always a bright side) I will sleep like a log tonight..... nobody can release that many tears, be left completely emotionally drained and then not sleep! My sister is taking me up again tomorrow and it'll be a better day. Each day I do will be better than the one before. 

I heard a man today say that he was there for his last treatment. I congratulated him, told him I was there for my first, and said he was great. He showed me his list of treatments (you get a bit of paper with them listed). He had marked each one off with black marker and only had the last line left to mark off. With a massive smile he told me he was finished, told me I'd do great and said I'd soon be marking my last one off the list. It's true and I appreciated his cheerful smile. In the cafe we spoke to two different groups - one a couple (the husband was up for a biopsy and was a total character who accused my sister of making eyes at him! She does have lovely big brown eyes...!), the other a mother, daughter and grand daughter (granny was up getting marked up for her treatment. She'd told nobody what was going on until treatment was confirmed). All around me, as usual, were people fighting battles every day. Sometimes it was hard to tell who was getting the treatment and who was there to support them. I felt ashamed of my constant tears. Nobody needs to see that! It's not fair to drag others down.... that's selfish. 

Honestly, this evening I remain anxious. I don't really know why..... just a generalised anxiety. A bit of delayed shock perhaps.I'm fighting it as ever, with the help of family and friends. I'll relax, settle myself and look forward to a good night's sleep. I don't like getting good luck messages as it can make me more nervous, but I know there are a lot of people thinking about me. Thank you for all the prayers and good vibes.... I'll take them all!! Funny stories and advice on stress management also all welcome!

Xxx

Inspiration....

I think I mentioned before about the woman who has walked my block for around 20 years. I used to see her, vaguely wonder what her story was and feel a degree of sympathy. Now I see someone who gets up and walks to battle through. I admire her. This morning I saw her and I crossed the road to talk to her. We told our stories and I told her how much I admired her because I now knew how difficult it could be to get up every day and walk round the block. She explained the demons she battled every day and I was so glad I'd stopped to talk to her. We talked about how life can just change and about confidence and strength. We know each other now and I have no doubt we'll talk again. That simple act of just being open with each other gave us a both a little boost. That understanding that life can be difficult for lots of people for lots of different reasons, but if you keep your strength of character, lean on those around you, and not be afraid to show your vulnerability then you'll get through the hardest bits. I wish I'd paid more attention before. There are strong people all around us. Pay attention! I'd like to think I was never an unkind person...... but there's no doubt I see the world completely differently now. 

Interestingly she also used to work in the hospital and was familiar with others with brain tumours. She told me, with complete confidence, that people live for a long time with controlled cancer like mine. I've been told this many times, but it was nice to hear it from a stranger who had no reason to say it. Not that she is a stranger anymore..... What is it they say? A stranger is just someone you haven't got to know yet...... I've been lucky enough to get to know a few very special strangers of late. Forget Stranger Danger..... start thinking Stranger Inspiration. I highly recommend it! Xxx

Showers and reiki

Our shower broke this morning. No big deal. We have two and my father in law is a retired electrician so we could always get it fixed. But nooooooo..... all my emotions are so amplified and I went into full catastrophising again..... Clearly something was smouldering somewhere and the house was going to burn down. This is at 7am. I was spiralling into a complete state and being a bitch. Hubby's trying to explain its early and he'll get it sorted after 9. I'm throwing a full guilt trip on him. Not deliberately, but to me this is the single most important thing in the world and it needs fixed immediately. Plus he's clearly not taking me seriously. Not reading my mind, yet again..... Not content, I called in the girlies! I have a whatsapp group with three wonderful friends who, like my sister, just never question my quirks or overreactions. Within a very short space of time we have an emergency spark on his way and I'm starting to calm. Turns out I've known him for decades anyway.... just hadn't realised he did that type of work. A no-nonsense type of guy; straight in, straight to work, fixed in no time. Exactly what I needed. 

My friend then took me to reflexology and reiki. I had been supposed to do this before but had a really bad day and hadn't been able to go. I should've given myself a shake, because that's exactly the day I should've gone! This was the most relaxing thing I have ever done. She was amazing. I felt safe, unworried and just completely relaxed and with no stress. I'm aware I've gone from being a very practical and questioning person, to one who takes great comfort from priests, prayer and healing hands. I'm not embarrassed by that. I've been missing out all these years by dismissing things. This has been, and continues to be, a horrible and very frightening experience. I'll take comfort from wherever I damned well please!! 

It's like what I said at the very beginning...... that I'd felt drawn to particular people with no real explanation. Comfort and relaxation is the same. Maybe everything doesn't need to be explained. Whatever works for you as an individual you should completely embrace. And for the  doubters (like I would've been...).... keep your nose out! Everyone has a right to be happy and relax in whatever way works for them. Open your mind and see what happens...... you might just benefit.

Anyway, one final interesting story about reiki. And this is one I'd never have believed unless it had happened to me..... with my eyes closed I was asked to say where she was holding her hands over and what colour I saw. I kid you not when I say I felt very strong warmth on my face and very clearly saw the colour green. Sure enough, she had one hand over my stomach and the other over my face. I've since googled and green in reiki is linked to healing. I left that room feeling like everything was ok. Relaxed. Safe. No anxiety whatsoever. The wonderful girl who carried this out even refused to take payment, saying sometimes she gets payment 'in other ways'. So to anyone feeling a bit tense or anxious, I'd say try something religious or spiritual. See what works for you. I have received amazing relaxation and peace from reiki, a priest and prayers from many different denominations...... I would've been very dismissive before, but now I know it's all ok. 

I followed reiki up with another beach walk. I'm sitting now, so chilled out now I can barely keep my eyes open! Unfortunately my life is planned around medications and food now so I can't really go to sleep until after 7pm medications and eightsies food to keep my blood sugars up. After that I'm confident I'll sleep the whole night through. I did last night too, but I'd imagine tonight will be particularly settled. The past few days I've felt more like myself than I have since surgery. The negative bit of me is annoyed that I'm feeling better just in time to get knocked by the next treatment..... but the positive bit of me always ultimately wins through....... I'm getting stronger. I'm healing. I'm ready for radio. If it knocks me back a bit (which it might not... everyone is different and I've heard some very positive stories) then I'll have the strength to pick myself back up..... just as I've done from the start after every difficult stage. With the help of family and friends, a positive attitude and the ability to relax, I can get back to a normal life. A bit different, but probably a lot better in many ways. 

Xxx

Radio ga ga

Confirmation that radiotherapy starts on Monday.  The nurse who removed my stitches (and who I'd happily bring home with me) has had a look and is content that we get started.

Part of me is crapping myself as usual...... the other part knows the sooner it starts the sooner it ends and that I'm lucky to have the treatment plan that some don't get. One of my wardmates has done her first session and said it was fine so that's reassuring. Scans and X-rays have been the easiest things I've done throughout this, so it'll be fine. I'm nervous about side effects, but I just need to take some control over that as best I can - make sure I'm careful with my diet (high protein and rainbow veg) and plenty of relaxation to keep myself calm (beach walks etc). I'm finally reading properly again..... and am actively trying to limit my screen time..... something of a digital detox. Not completely as my phone has been a really important way of me keeping my spirits up by staying in touch with people, but I know I need to reduce the time I'm spending in front of it and the tv. Ironically I'm of course typing this on my phone....!! Anyway, it's nice to read a paperback properly again and I've started doing that every night. Makes me glad I never bought into the kindle thing..... a book should have a smell and you should feel the pages as you turn them. You should be able to turn the corner down so you know where you've got to.  I used to read every night so it's good to restore another bit of healthy normality. 

Confidence levels are definitely increasing. Yesterday I went to see a work friend while in Belfast. Granted, my son was with me, but even still...... and we went for lunch in a cafe afterwards too. 

Today I walked to and from counselling on my own (it's a round trip of around 3 miles so not too far, but great for my confidence and for tiring me out so I can sleep easier at night) Yet another thing I couldn't have contemplated a short time ago. Almost like a half normal person. Maybe I'm just learning to live life slightly stoned..... plenty of others do it!..... it's still not for me through choice, but if it stops seizures and keeps me safe then it's probably worth it....!

The trick is to try and maintain this progress through radio. I'm not naive, I know it'll be challenging. But I always rise to s challenge...... always!!

Since I was a teenager a woman has walked up and down the roads near here. I always assumed she had an eating disorder as she's very thin. I've no idea if that's true. Sometimes she has a crutch but mostly not. I used to look st her with a degree of pity. Feeling sorry for someone obviously unwell. How wrong was I?? Now I completely salute her! She has been walking that block for 20 odd years!! Whatever's going on with her hasn't stopped her. She keeps going, even when she needs help to walk. I admire her and am channeling her energy and tenacity!

Please no good luck messages ahead of Monday - it just makes me believe I've something to be nervous about. Just motivational and energy filled messages! Or nothing at all. I know the people who've got my back. And I love you for it.

I've come this far and done far worse than this. They cut my head open ffs...... twice!!do I even need to remind you I was awake for one of them?? 😬🙈  A wee zap and a few bald patches will be dead on. Plus I get to see a few of you for cuppas and chats! What better way to spend my day?? Xxx

Calm yerself....!

The last couple of days have been much calmer..... I'm worried about writing that in case I scud myself, but I'm taking the chance..... I always wake up feeling anxious, but I try to manage it with funny videos, music and positive self talk. Im often a bit anxious going to sleep too, and it's a fairly frequent feeling in the pit of my tummy during the day as well. Probably not surprising really. 

The past few days, however, have been fairly relaxed. I've had seaside walks, relaxation time and even a visit to a chapel. I wasn't raised catholic..... I wasn't particularly raised anything. However, I do find there's something very calming and relaxing about a chapel. It's almost like a form of meditation to just sit in silence, relaxing your shoulders, breathing deeply and taking a moment. 

The sea air is definitely restorative too! There's nothing quite like it. Again, calming and relaxing. Plus it leaves you tired...... meaning I'm confident of sleeping well at night. 

Confidence has probably been a big thing for me too...... I'd not I realised how much. I'd never have admitted it anyway! Any medical professional trying to suggest I might be having a difficult time due to the shock of what's happened would probably have felt my wrath. It's back to that old feeling that I have to be strong all the time. I am strong, but I'm also becoming more accepting of the fact that I need help from people and that I need to stop overthinking everything. I think I'm learning a bit better how to just 'be'. I'm not there totally yet, but I'm definitely taking some pressure off myself. It's changeable, but I feel like I'm better learning how to relax. Doing that has increased my confidence and allowed me to do so much more. I'm walking far further than I would've been able to before, often on my own, and am far less concerned about seeing people I know or going into shops etc. And on days that I don't feel up to it, well I don't do it! It feels better to not be constantly stressed, and I know it'll help me physically as well as mentally.  Wish I'd learnt how to do it years ago!! Xxx

Tips to managing anxiety

I find myself often in a state of anxiety.... sometimes it's just an underlying feeling in my stomach and chest, sometimes in the morning it's a full blown panic attack. I think this is a side effect of the anti seizure medication (more or less confirmed by the effects of increasing the dose), however I really don't know for sure....... it is undoubtedly a stressful time! I've developed some coping strategies and thought they might be useful to share. You never really know who's struggling with stress and anxiety. It's often not the people you think.

So here they are, although I know I've shared some before. We're all different and something that works for me might not work for another, but worth a try. Some are more strategic ways to stay calm in general, and others are specifically for dealing with a panic attack.

1. Music - I've made a playlist on Spotify called 'positivity blast'. It's just upbeat songs that I can't help but sing and have a wee dance to.....

2. Positive self talk - I talk out loud. Usually to my husband, but sometimes just to myself. I just say that I'm in control and that I'm not allowing this to happen. I remind myself I've stopped them before and can do it again. I remind myself how far I've come and of things I've achieved. I praise myself for the little things! If I've achieved something I contact people that I know will get excited with/for me. 

3. Deep breathing. A yoga teacher taught me how to breathe into my tummy so I do that now regularly through the day. If an attack comes on I try to regulate my breathing by doing this.

4. Relax - I've realised I hold myself very tensely so I make a conscious effort every so often just to relax. Drop my shoulders, unclench my jaw. 

5. Fresh air - I get this every day. The past few days I've walked on the beach with my sister. Sometimes it's just to the top of my road. Doesn't matter, just fresh air (combine with 3 and 4 for best results!)

6. Looking at messages from friends. I go to sleep fairly early so when I wake up I've usually got some messages on my phone. I look at them, safe in the knowledge there will be love and support in them. They help.

7. Hand holding. I'll quite often hold a family members' hand. It helps brings me back to reality and reminds me I'm not alone.

8. My friend made me 'Tricia's portable positivity cards'. Beautiful. The size of business cards, laminated and attached together with ribbon. Each one has a hashtag on it. Something that means something to me. I can flick through them any time I feel a bit distressed.

9. Flexing hands and feet. Just reminding myself I'm in control of my body.

10. Read a funny or uplifting book. I have a few that I dip into. Sometimes I read them out loud. This morning it was 'The Twits' by Roald Dahl. Even hubby stifled a wee giggle, even though I was talking over Match of the Day..... The first chapter of The Twits about facial hair is just plain funny! I'm also quite enjoying Miranda Hart's 'Is it just me?' 

11. Funny YouTube videos. My favourites at the moment are flash mobs, Billy Connolly and Kevin Bridges. Anything that'll make me laugh and also distract me from what's going on.

12. Funny photos. This doesn't really work for me as well now.... I used to use funny selfies to give me a wee boost. Now I tend to associate them with being in hospital, so I don't look at them as much. They definitely helped me through that time though.

13. Don't rush. I give myself a minute and don't pressure myself. I know I can get past it and I give myself time to do that.

14. Do something for someone else. Send a card or a message of support or thanks to someone. It's true that you feel better about yourself if you've helped someone else, in no matter how small a way. Many people reading this will know this already because you've done so many things for me!

15. Be a decent person. It's easy to be critical and to bitch about people. I've had a couple of moments where I've been mean about people.Usually  because they haven't read my mind and known what I needed them to do in that second!! I knew from before that getting annoyed with someone will ultimately only harm you. I've had a couple of contacts from people I've had difficult relationships with in the past. They have given me pause for thought. Then I remembered I'm not a selfish cow! Never, ever throw an olive branch back into someone's face. Deep down you'll know you're wrong and you'll feel bad for it. I certainly would. Take it at face value. If someone is in touch with you then accept it's sincere and decent if them.

16. Spend time with family and friends. Include having good laugh into this! I find I sleep best when I've had a nice day. It usually involves a challenge of some description but also always involves time with family and/or friends. I have to careful I don't get carried away as I get tired, but it's lovely to have different conversations and not have to constantly talk about what's going on with me. I particularly dislike getting bombarded with questions. That's part of the reason for this blog! I understand people want to know and most of the time I can factually talk about it.... but sometimes it can be a bit too much for me. 

So there you go. I'm also exploring the availability of complimentary therapies locally. Just to help keep me chilled out in general. I did have a friend who specialises in stress management offer me sessions, but unfortunately it's another trip to Belfast and we've enough of those to organise at the moment! I'm hoping counselling will allow me to release a lot of the more negative thoughts that can creep in too.

Plus, in a bold move, I have ditched that new anti seizure med I was given...... I've enough to deal with. I don't need to be completely insane at the same time!! The med I'm on at the moment stops the seizures. That's what it's supposed to do. I'm learning to manage the side effects. They're crap, but I think experimenting with other meds while trying to manage radio will be unbearable. All anti seizure meds are unpleasant I think. They mess with your brain..... that's what they're supposed to do. I've enough going on up there. I'll try sticking with the existing one and then hope to get off all anti seizure meds at a later date if that becomes possible...... We'll see. What I do know is that introducing another is too much. As my sister pointed out today "you know your own limits"..... yes, I do........ 

I've no idea if those tips will be any use to anyone, but hopefully if anyone is feeling a bit stressed or anxious, or having full blown panic attacks, then these will give them something to think about..... xxxx

Anti seizure drug evilness.....

I watched the story on the news tonight about the young guy in a medically induced coma due to abuse of epilepsy drug Lyrica. I admire his mother for releasing the photos and for speaking out. I can't imagine I have any blog readers that abuse anti seizure medication, but just in case, here's a message just for you..... don't be an idiot!! 

Anti seizure medication is awful. For me it (not lyrica, but other types) has had side effects including insomnia, anxiety, slurred speech, disorientation, nausea, blurred vision, tiredness and inability to think straight..... These are not 'fun' drugs! They are horrific. I feel complete empathy with anyone who has epilepsy. I had no idea how it could manifest or how heavy the drugs used to treat it are. It's a very irresponsible thing to say and I will of course continue to take the meds, but sometimes I think the seizures are preferable! I've been trying to move off one medication onto another..... this has to be done really slowly. You introduce one really slowly and then start to taper the other one off..... The obvious problem being that you have a period of being on both. So I have one that stops my seizures but makes me feel like crap, and I'm introducing another that makes me buzz. You'd think the buzz would be best??..... not when the two meds meet each other...... you swing from mania to acute anxiety. This morning I experienced this clash. I do not recommend it. It's nothing short of terrifying and extremely disturbing. As a result I'm now considering stopping taking the new one and just sticking with the devil I know...... even though it is a devil...... I'm just not sure  that sort of mental conflict is one I can deal with at the same time as getting myself through radio. One thing at a time. My current anti seizure medication does what it's supposed to do - it stops seizures. I still get some absence seizures, but I can live with those. The side effects are nasty, but I'm learning my coping mechanisms for them. Introducing another one is not working for me. I'll see how I feel in the morning, but I'm unlikely to take the new one again. 

Doctors are fine, but they're not in your head and they don't know how you're feeling. I need to focus on being strong for radio at the moment. Seizure meds can wait. So long as I'm not taking seizures then let's not mess with my head anymore than we need to!

As a result of the disturbed sleep and awful start to the day, the rest of it would've been difficult..... except for my hubbys support, a visit from a good friend, and my sister of course. My friend did the most wonderful thing for me. She made me cry, but in a good way! She made me little 'positivity cards', laminated and tied together with ribbon. Each one has a different hashtag printed on them..... for example #hugsnotdrugs #wardofwinners #breathe. She said the idea was that I could carry them with me and read them if I was feeling a bit stressed. What an amazingly thoughtful gift! They will go everywhere with me, and I've no doubt they'll get used. These are the things that help so much. The cards, the blanket of love, the messages of support and love, the visits, the faith in my strength. If any of you know anyone who's going through a rough time, take ideas from what my family and friends have done. Hold their hand, reassure them, be there for them. If you can't knit a blanket then send a text or make the cards. Send a card, full of positive messages. I'm trying to pass this love and positivity on to others and if I can give even a tiny proportion of what I've received then I'll make someone else's life better. 

Xxxx

Preparing for the next stage....

It's been a strange few days..... as I'm learning is guaranteed now. I've had some really good times and also some tears. Understandable I'd say. Big achievements have included going out to a cafe for lunch with my son, a lovely walk along Portrush West Strand with my sister and a fairly honest and needed conversation with hubby (a wee bit of acceptance crept in.....). I've said so much about how our lives have changed and been so positive about being fluid and never stressing again...... and then I've completely ignored myself!! I have stressed out moments pretty much every day. That's really stupid. I need to learn what's important. Not just saying the words..... actually doing it. I just keep trying to go back to my old life. My comfort zone. But I need to accept that's not going to happen. My life is different. And that's ok. Well, maybe not ok as such, but I have no choice in it so I may learn to learn from it and make myself a better person from all of this.

Relationships in particular have been built and changed forever. In a really positive way. I'm closer to family than I've ever been. I have developed friendships and I hope to give back to those people as much as they have given me. So many good people have come to the fore. Some I didn't know that well beforehand but I'm now hugely grateful to have in my life. I look forward to building on those relationships and learning more about those wonderful people. 

I'm back up to get my head wound checked on Wednesday. After that radio should start. Yes, it'll be tough.... but this whole thing is tough. Every single day brings 'tough'. I have to do whatever could bring better things physically. It's short term pain for long term gain. So let's get ready for the next stage. The marathon. Other people do it. I can do it too. Better times are ahead and I'll make sure my life is put to good purpose. I don't know what I'll do yet, but I'm quite sure I'm supposed to be achieving more. 

Deep today!

Xxx

Fighting the fear....

The thing about battling something in your head, is that it's in your head!! It affects how you think and your resilience. You change a bit. Throw some heavy duty medications into the mix and all of a sudden things can get very challenging indeed. You can be as determined as you want, but sometimes something will change and it's very difficult to understand it and keep fighting against it. But I've said from the start, I have two choices..... I can lie down and do a big 'boo hoo, woe is me' or I can keep pushing through, no matter how hard it can get. I was never going to do the first. And there's a reason why people always say a rainbow only follows rain. You cant have the highs without the lows. The good thing about the constant change is that when things are bad you know they'll always turn around again. 

Yesterday was great but then went horribly wrong.... for the first time I started to feel a panic attack coming on as I was going to sleep. Usually they're on waking up. I've never had them at any other time. As I was dozing off I could feel the first signs..... I did my breathing, engaged in some positive thoughts, relaxed (I hold my shoulders and neck so stiffly...... not sure if I always did, but I notice it now)..... and guess what?? I fell asleep! I was so tired that I didn't even have the energy for a panic attack! A great step forward because it shows me that, even though I'm fighting against the side effects of a drug, I can still win. This morning I woke just before the alarm. I felt ok but when eating breakfast I started to feel like I could have a wobble. I did what I know works..... deep breathing, singalong music, positive talk. It didn't happen. I felt a bit like I was teetering on the verge for a few hours, but I kept myself distracted by getting showered and dressed,changing  the bed sheets, putting a wash on etc. I needed fabric softener so asked my son to go down to the shop and get some. Then I had an idea....... let's go together! We can walk and I'll go into the shop for the first time in months...... I did it. It wasn't even stressful. It's something I've done a million times and Fin was at my side. No problem. After that I had visitors. A busy enough wee day. Later on I'm going to see a charity about compliment therapies that are available locally. Those are the things that'll help keep me settled and make fighting against any weird emotional reactions easier. 

Prior to my counselling tomorrow I was thinking about the coping mechanisms I've worked out for myself..... building on them might be the way forward.....

1. Music - a big one for me. Family are thankful my tastes are starting move back to where they were before..... still no Metallica but I can do a bit of Dan Baird/Georgia Satellites, Aerosmith etc I like a wee sing, and a wee dance is even better! Still has to be upbeat, but it can distract and ease any nerves.

2. Comedy - Billy Connelly is working for me at the moment. How could that not make you laugh??

3. Positive self talk - Being strong. I will talk out loud and tell myself I am not allowing it to happen, rhyming off the things I'm grateful for and why I'm ok. I'll remind myself it's the meds and that I've beaten it before and will again.

4. Flexing hands and feet - I'm not sure if it's simply because it reminds me I'm in the real world.....

5. Petting the dog - Something else to focus on. Her big, brown eyes looking up at me and feeling her soft coat.

I think it will do me a world of good to be able to talk to a stranger and not have to hold back any of my thoughts and emotions. Just to get that release. Plus I hope she'll be able to give me a few more ideas for mechanisms to bring me out of any panics..... and just dealing with everything that's going on.

Hopefully changing the anti seizure meds should help things too. Though I'll confess to still being nervous about that..... I'm scared of making things worse. It can be a very fine balance. But I know I'll have to take a chance in order to make things better over the longer term. I'll cope with that like I've coped with everything else. And when radio starts, probably the week after next, then I'll suck that up too. Because that's what I have to do to get a life back. And I want a life back. For me and for everyone around me.

Xxx

More challenges....

I had three main aims for today...... the first was that I was determined not to wake up in the horrors. I was quite sure that a positive attitude and relaxed demeanour could achieve this. Mind over matter. The second was to call into work. I miss my colleagues. My friends. My team. The third was to get my anti seizure medication sorted out...... I'm a bid to stop the horrors.

Aim 1 - not achieved I'm afraid. I woke up early and was in a mess. Shaking like a leaf, sweating, itching all over my skin, crying, heart pounding. With hubbys help I managed to get through it, but I was left exhausted and really not feeling particularly well. I was slow moving but got myself showered and sorted eventually.

Aim 2 - achieved! I called into work and saw my wee team and colleagues. Despite not feeling particularly well today, their company lifted me no end. My friends. My family. It was lovely to see them and spend time with them. They're so supportive and that means a lot. It didn't exactly feel normal as such as I was treated like royalty...... not that they weren't good to me before, but I didn't generally sit in the boss's chair and have tea and buns brought to me! Not that I'd have cared either way..... just to see them and get time with them was great.

Aim 3 - not achieved. This one is an interesting one and I'm not sure how I feel about it...... I want off the anti seizure meds because I think they're doing weird things. Upping one of them appears to be what started the night terrors.... Unfortunately you can't just stop taking anti seizure meds, or just swap to another one. It has to be tapered. So instead of getting rid of one, I've managed to add one! Short term I know..... adding one to remove one at a later date. Honestly, I'm not entirely comfortable with this. I believe them but it's just another drug...... and we know I'm not tolerant. The new one can cause a very dangerous rash but it's rare..... I'm very worried about this as I'm very prone to skin conditions and I already have some rash patches from the existing drug. So no, definitely not sure..... I will chat to the specialist nurse about this one. If I can get the night horrors under control then it might be better the devil you know...... although I definitely can't keep waking up like that every day.

The other big events of today were fairly big ones too...... visits to the big smoke are never very good! As I was on my way to see the neurologist I received a phone call saying radio was starting on Thursday and asking me to come up tomorrow for pre appointment.... we were literally driving past the hospital at the time so were able to do it straight away and save another journey up. I was fairly overwhelmed at the thought of starting on Thursday and there were a lot of tears. The nurses were brilliant and got me calmed down. So now I'm thinking, the sooner you start. the sooner it ends...... Off to our original appointment (we're totally late by now but they've been rung and told so it's ok). I'm told to get my wound checked just to be sure it's ok for radio. 

So we have neurology appointment and then off to get wound checked. I've been very careful of it. Maybe too careful.... avoiding touching or washing it etc. A nurse gave it a good sterile clean and took away all the scabs and yucky stuff. The surgeon has a look...... and explains there's one bit that's a bit raw. Nothing to worry about but not suitable for radio. So all change again...... no radio on Thursday after all.

As usual I sat there looking like I was taking it all in, not really absorbing any of it. It's always after that I reflect and have the meltdown....... no different today! Why change the habit of a lifetime?? We were late getting away and I needed to eat; resulting in us not getting home until nearly 8pm. By which time I'm exhausted, completely overwhelmed and totally stressed out. Poor hubby has received the sharp end of my tongue on the way home, and sister and surrogate sister have both listened to me on the phone, rabbiting on in an incredibly high pitched voice.....

Looking at the positives..... which I have to do or else I'd just be hiding under the covers by now....... I've another week to get ready for radio. It's not being sprung on me the way it was being earlier. It'll still be soon and it'll be over with in no time. The wound looks good.... bald, but good..... my hair will cover it. Radio will take more hair patches anyway so I'll be rocking a new style on down the line. The change in drugs is a necessary evil and will be worth it if it stops me having to deal with the side effects of the one I'm currently on.

I won't lie...... this afternoon is up there as one of the hardest. I'm stressed out. I'm not feeling as strong as I have done. But I also know that, despite being surrounded by support, ultimately only I can get myself through this. Other people do it and I will to. Im mentally incredibly strong willed and I need to use that to my favour. Instead of fighting against medications and questioning medical staff all the time, I need to focus my energy on building myself up physically and mentally before radio. I've got an appt with a charity tomorrow to see what complimentary therapies are available..... aromatherapy, reflexology etc. Stuff like that has been useful so far, so the more the better! Then on Thursday I've got counselling...... again, can only help. I'm well past the stage of pretending to be completely on top of this. I'll get there, but I need my family, friends and whatever other help is going. As my dear friend told me; sometimes it's ok to lean on people. Well I'm  leaning now. Not that I haven't up until now..... but it's a proper, full body weight lean now. I remain grateful I have so many around me with strong backs. Xxx

Surrogate sister....

I have a wonderful sister.... anyone who's read this blog will be well aware of that! Unfortunately she lives in England and has a job. She's dedicated, and continues to dedicate, so much time to me. She's the first message I get every morning and the last every night. I tell her everything. She comes as often as she can, and sometimes when she really should be somewhere else. But she can't always be here. 

Lucky old me, I also have a surrogate sister..... a friend who just always knows what to do. This morning I woke up in the horrors again..... not quite as bad as before, but a very real panic. My surrogate was on call to come over if I needed her, but I was very conscious that she had other places she needs to be. So I was working very hard on getting myself over the terrors and sorting myself out. I was doing deep breathing, talking positively, and telling myself I was quite simply refusing to let it happen. The big man was helping me and it was going ok until he said he had to go to work..... The thought of being on my own spiralled me. Although I know my gorgeous son was in the house and would've worked with me, in his naturally calm and sweet way. I really didn't want him to see me in such a mess. I had texted my friend and told her I was ok and didn't need her. Kind of a lie, but I'm so conscious of starting to use people as crutches. Though I seem to keep doing it! 

No sooner had hubby left, the door knocked..... guess who?? She laughed, pointing out that she's my friend and usually knows when I need her (even when I say I don't). What an amazing human being. We sat on the bed, watching Breakfast and chatting. Izz lay with us and, after a while, my son came and chatted too. They made me laugh with their tall tales, jokes and ridiculous film ideas......

By mid morning I was lifted. I got up and had a shower and got dressed. Then another friend arrived. Full of chat and good company as always. We enjoyed a good lunch together and then it wasn't long before both 'the dads' arrived. A nice cuppa and fifteens, before a short walk with my dad. It was so nice to get the fresh air and also talk honestly with him about some of the stuff that's been going on. It's natural to try and protect people, but the reality is that you have to tell people what's going on or they can't help. 

It's ok to lean on people..... it's not something I've ever been used to doing, but I'm learning the difference it makes. It's not weakness. It's the thing that will pull you through. I'm learning how to ask for help, and I'm accepting that I often need it. I'm not beating myself up so much about it anymore. I have been so fortunate to be surrounded by friends and family who want to support me. My cage. They all do it in different ways. Some send me uplifting or funny messages, some help me out in practical ways when I ask, some visit and allow me some structure and fun to my day, others just instinctively know when I need them and appear. You're lucky if you have one person in your life who falls into the last category...... I've got a few! Thank you remains nowhere near enough...... xxx

Drugs are bad....

I only thought yesterday was a bad day following the increased dose of my anti seizure medication...... I spent last night practically crawling around the bed, before waking properly the morning in the pure horrors. My skin was itchy, I was terrified, anxious, crying, agitated, exhausted..... What I'd imagine you'd feel like if you took crystal meth..... which I don't plan on doing anytime soon. We ended up getting the doctor out, who agreed everything I was describing was a known side effect of the anti seizure drug of just increased the dosage of. We agreed to drop it back out tonight (which I would've done anyway, regardless!) Of course I was offered diazepam, which of course I refused. Thankfully, with the help of the big man, some deep breathing, reminders that I'm ok and a FaceTime with my sister, I managed to get settled down. I know I keep fighting against the prescription drugs and I know they're needed...... but I also know my own body. I'm not tolerant of them and I maintain the majority of my problems have been caused by them. Worst patient in the world, I know. Even the steroids were preferable to this stuff!! I'd rather talk all day and eat like a horse than wake up in a terror. But they're different drugs for different things and I know I have to take both. It's just trial and error, but the errors are pretty awful when you're experiencing them. By lunchtime I was basically talked down. Still exhausted. Scared to sleep yet again..... but I knew I needed to. Can't stay awake forever. So I risked a wee afternoon hour. Thankfully I woke up without the same fear. Still shattered, but not the same anxiety. After a very, very slow coming to I pushed myself to go for a walk with the big man. Fresh air always helps. I'm still wobbly, by managed a short walk. Now I'm back, relaxing and watching comedy tv. I'm still exhausted but with the dose back down again tonight I'm hopeful for a better sleep tonight. Then maybe a good day again tomorrow. Today felt like a massive backwards step, but I know I also get days that feel like massive leaps forward..... just got to keep holding onto the rail and ride it out........

I've really no idea why I keep blogging. I'm quite sure I'm just disturbing people now. I guess it's just my way of getting it out. Giving myself yet another virtual kick..... this was just a step back due to the meds, it's sorted now, pick yourself back up....... Which I will do. With everyone's help as ever.

Xxxx

Frustrated....

Not a great day today. One of my anti seizure meds has been increased at night. This was to counteract the absence seizures. Now I'm in the position where I think the absence seizures were preferable! I maintain the drugs are the worst bit of this whole thing. Today I've been exhausted. I felt sick all morning and am now struggling just to keep my eyes open. I'm fighting it because I want to sleep through tonight, without the 4am 'we've slept in' internal wake up call. 

As usual, friends and family have kept me held up through chats and messages. I was emotional this morning..... because I was tired and felt sick. Some lovely texts etc made me smile. 

At lunchtime a friend arrived and gave my hair a wee trim. There's really nothing I can do with it at the moment anyway, but she just took the straggly ends off for me. I knew I could trust her to be gentle and careful and she didn't disappoint. Plus she was lovely company. Just another one of my multi talented friends..... a work colleague and former hairdresser who also often brings me lovely food (leek and potato soup today!) How lucky am I to know such clever and generous people?? 

I did get out for a walk this evening, but I didn't have one on my own today. I'll see if I'm a bit less tired tomorrow. If I'm learning one thing, it's that everything changes! So today wasn't a great one, but tomorrow could very easily be the total opposite. If it's not tomorrow then it'll be within a few days time..... I look forward to the time when things just level out and become a constant state. I'm definitely finding the good days are much improved. Unfortunately this tends to make the bad days a bigger crash. The rollercoaster has become more Disney World than Barry's.... I feel confident that at some stage the carriage will get stuck at the top of a dip and stay there..... which actually happened to a friend of mine on Barry's Big Dipper around 30 years ago.... pretty dramatic but rectified by the old 'just shake it about' tactic....! I'm sure she's never been on a rollercoaster since..... I'd get off mine if I could. But unfortunately I don't have that choice. For whatever reason this is the hand I've been dealt. Honestly, I could do without it. I'm sure my family and friends feel the same. As I'm sure everyone who's unwell do. We don't get these choices. We just have to hunker down and get on with it. 

So here's hoping for a less tired day tomorrow. Regardless, I'll be taking advantage of the weekend and making sure I get out. Fresh air always improves things. I'll keep reminding myself that it's temporary. I'll focus on the positives..... of which there are so many in my life. 

I've got 2 weeks of my gorgeous son at home with me. He'll be studying and working some days too, but it'll be lovely just to know he's in the house most days. Plus hubby has a couple of days off for Easter coming up so that'll be good too. I wouldn't want babysat all day, every day. It wouldn't be a normal state and I'd feel like a burden (I often already do, despite what anyone says to me), but I'd be lying if I said it isn't nice to know there's people about sometimes. I hate anyone doing it as a 'duty', but I do often relish company or just knowing there's someone in the house. Remember, I've gone from a busy working environment surrounded by people, to being at home all day. That's difficult. I know I probably need a 'project' of some description..... a number of people have said that to me and it makes sense. The problem I have is that I'm so unreliable and I also try to limit my time in front of a screen as I'm quite sure it made my absence seizures more frequent. I wish I was artistic!! I could paint or colour...... but I'm rubbish. My skills lie in researching, writing reports, doing a good spreadsheet...... One friend has suggested lego.... maybe not the worst plan I've ever heard! Ive puzzle books too and am starting to look at them. I need them to challenge me but not totally frustrate me. I've ordered to GCHQ one..... that could be interesting.....!! If anyone has any ideas for 'things to keep Tricia busy without totally overloading her' then please contact me. All options considered! And remember, I might have stuff going on but my favourite hashtag remains #stillnotstupid 

Xxx

Up and down.....

A strange few days...... very much up and down....... a few days where friends and family have very much held me up..... as usual! Yesterday had started ok but was completely ruined by a really simple thing..... I dropped a mug. It smashed. I cleared it up and then used the vacuum to get the last bits. Izz barked at me (or, more likely, the vacuum)...... it was just too much for me. Complete overstimulation to my brain. I couldn't deal with it at all. The result was both emotional and physical. I felt panicked, nauseous and shaky. I tried to calm myself but nothing was working. At one stage I was colouring in and listening to Classic FM!!...... but I still felt the same.  Just unsettled. 

I woke up yesterday, still unsettled. Although I did achieve a small goal by going for a very short walk on my own for the first time. The fresh air can help so much! I spent the morning sorting out books, though we're only left with happy ones! I've put all the thrillers etc in bags for charity. Only positivity in this house! So The BFG stays, the Ian Rankins go.... I had a friend up for lunch which was lovely, but truthfully I was still a bit unsettled. I think I hid it fairly well, but I was nervy. For no real reason..... just one of those days. After she left my dad called in. It was nice to see him but I remained a bit nervous. I told him about it and he tried very hard to settle me. It's difficult for people because I often say I'm ok when I'm not, and even when I'm honest about it I tend to play it down. Only those I'm very, very close to will get the truth. Not that I'm not close to my dad, because I am, but I'd never deliberately say anything that might upset him.

After he left I went for a wee sleep. I wasn't long awake when my doctors surgery rang with blood test results. I was half asleep and had no idea what they were talking about. They were all fine apart from something to do with my liver. I hung up and realised I was in a total stress over it. So I rang back to try and ask more questions. I didn't get too far..... it's nothing to worry about and will be checked again in 2 weeks. Nope, still panicking. Catastrophising, isn't that what we've learnt it's called? Yep, I was doing that. I was unsettled all day. Later in the evening a specialist nurse rang from RVH and explained that one of my medications causes a rise in something in your liver. It's no higher than if I'd had a glass of wine and absolutely nothing to worry about. That helped. I went to bed last night feeling a bit better emotionally, but I felt a bit nauseous.  Everyone hates feeling sick. Don't tell me you don't.... it's the worst feeling in the world! I have tablets but of course I won't take them. Thankfully I was exhausted and fell asleep fairly early, but still woke a few times with the 'we've slept in worry'......  I also had a dream that I had a seizure..... one of the ones where it's like being tasered to the face...... I'm pretty sure I didn't have one. Big man would've woken up. Plus I stay conscious in those and can move my right hand so I'd undoubtedly have hit him to get his attention if he'd still been asleep! Also I've only had a handful of them, and the last one was weeks ago. So no, I don't think it happened. I have had some very strange overnight experiences since this all started. Often medication influenced I suspect. Plus I was always prone to the odd vivid dream. I can't even say this one was particularly vivid..... 

This morning I still didn't feel great. It's often mental but it manifests physically. So I'll be a bit dopey, often shaky and can't really concentrate. I pushed myself to get up and showered etc and then took s slightly longer walk alone. Not far but a good challenge all the same. A neighbour reminded me earlier that I'd told her I'd know I felt better when I was able to walk up the road on my own. Well then I must be feeling better...!! The same person went for a longer walk with me a lunchtime which was really nice.

I'm finding that my alert times are definitely better - when I'm good, I'm good! I feel much more like myself. My dopey moments are worse though..... probably partially because I'm mentally waging war on myself. I'm expecting too much as usual and beating myself up when I don't feel good all the time. So any dips are made worse by my insistence on overthinking and berating myself....... I have counselling next week; god love her, she'll have her work cut out!! 

I've kept today relaxed. My lovely neighbour went out for a walk with me at lunchtime and it was great to get more fresh air. I'm now continuing to chill out. The in laws are due late afternoon so I'm keeping myself relaxed so I'm ready for visitors. 

It's just so up and down. Frustrating. Sometimes worrying and upsetting. My colleague asked me yesterday what made me feel good? On my best days, what was the common thread? It was a great question..... One is visitors, undoubtedly. Seeing friends and family always lifts me. The other is achievement. So going into the cafe the other day wasn't very nice, but I felt good afterwards for having done it. So it's about small challenges. Bear in mind that I hate being pressured and am likely to dig my heels in...... so much as my husband tries to issue me with small challenges, this will never work! I either have to decide myself or else get a gentle pull. I think that's the difference..... it's not a push, it's a pull.....  a subtle difference, but a big one. 

One step at a time. It still feels horribly slow to me. Time just seems to be passing around me. Sometimes I feel a bit like I'm scratching off each day..... just getting through in the hope I'll wake up feeling like my old self in the morning. I know that's just impatience and that these things don't work that way. I'm going to have to uk my stamina a bit...... there's a lot still to come and I need to be fit mentally as well as physically. I'm strong and determined but I also overthink. I'm going to have to keep the first whilst learning to manage the second. People can help, but it's something I really need to work out myself. Hopefully the counselling will help and a massive thanks to everyone who's sent words/books of wisdom. It's so appreciated. I find those who have been through something themselves often have great empathy and have some great pointers for dealing. 

Xxx

Constant change....

None of this ever seems to stay the same. I had a relatively good day yesterday. More yoga and relaxation which was lovely. I came home so relaxed I think I could've slept from then right through the night. Later on in the evening I think it's fair to say I was somewhat crabbit. Being unreasonable. The big man was getting it tight! Eventually we talked it through. I simply cannot do stress now. Even if I've caused it myself..... Everything has to be calm. 

Yesterday had been quite a tearful day anyway. I don't know why. A friend did send me the most wonderful message that completely lifted me. She told that whilst things might seem slow to me that they were massive strides to those looking in. Encouragement. Faith in me. A perfectly timed and beautifully written message. 

I kept waking up through the night last night..... kept thinking we'd slept in. More specifically kept thinking the big man had slept in and that it was my fault...... back to overthinking and feeling guilty again. When the alarm did go off I was really tired. But I've learnt the 'back to sleep' doesn't tend to do me any favours, so I got up and showered. I was so exhausted and really not focussing on anything. I ended up going for a walk to the end of the cul de sac; no distance at all but the first time I've left the house on my own! I came back feeling so proud of myself. Fin was still in the house anyway so I knew I was perfectly safe. 

A work colleague arrived up mid morning and I spent a few very pleasant hours chatting to him. Probably just as well he was here...... a Jehovahs Witness came to the door. Older lady, friendly face. I'd have likely invited her in if I'd been here on my own! She'd have left terrified!..... or she might still be here!!

During the morning I spoke to an expert nurse about my anxiety attacks..... which it seems may very well be seizures. Epilepsy manifests in so many different ways. It's not the way I thought it was. If it turns out that is what they are then I'm not taking it as a negative..... the swelling is reducing in my head. Things were bound to change. Absence seizures do not kill! They are merely disconcerting and leave me very tired, upset and a bit dazed. There's talk of upping my anti seizure meds a bit. Regardless, it's always good to know what it is. Epilepsy, like most illnesses, can be exacerbated by stress etc, so while my relaxation and breathing exercises can't pull me out of a seizure, they can help less of them happen. So I'll continue with attempting to achieve my zen lifestyle! Another lovely friend from work sent me a great book about living a calmer life....... seems full of good ideas and reminders. 

The only way I'll be able to deal with this and stay happy is to stop overthinking. I'm still terribly guilty of doing that. It's got to stop. It's so unhealthy. I will find my gentle pace in life and I will learn to drift through. Grateful for every day and for the happiness and love I'm surrounded by. Guru Trish!! Xxx

Sisters

There's something about a sister..... My husband is being incredible, plus my son and so many friends, but my sister........ it's just a completely different relationship. My sister is completely laid back. She just instinctively knows what to say and do. She doesn't put any pressure on me yet she achieves the best results. She just knows..... 

Last night we just watched Saturday night TV and chatted. We went to sleep early, as I always do now. Unfortunately I woke up in the middle of an anxiety attack.... I'd had a dream. Not a particularly scary dream, but one with a pretty clear message, and I was gripped by that horrible feeling. I didn't know what time it was and didn't want to wake my sister, so I tried to breathe through it and think positive thoughts. It wasn't working..... then the alarm  went off. I talked things through with her and got myself settled. I'm always left really tired after I've been anxious like that, so I had to really resist the urge not to have a wee doze after breakfast. I knew that'd be a terrible idea. So I got up and showered. I'm so slow moving, but I get there in the end! My sister pottered about, doing a bit of cleaning and cooking. Putting a few meals in our freezer which will be so appreciated. When I was eventually ready we had lunch (yes, it took me that long!) Then we took Izz out for a walk. Again, not a huge distance but further than I've walked in the past. Then back home and she persuaded me to tackle a few things my poor husband has been trying to get me to look at for weeks.......

The kitchen chair in the bedroom that he falls over every day. The one that has a box on it, filled with all sorts of stuff. The one I wouldn't move because "it's important to me". Plus clothes..... thrown over the chair precariously. PJs and all sorts of leisurewear..... comfy..... important but they can still go in a wardrobe! The stack of books and magazines on the floor beside my bed that I rarely look at. She even persuaded me to tidy and polish my bedside locker and dressing table. Both covered in stuff I kind of need, but both cluttered and also covered in unnecessary stuff. The bag of stuff I had put together for another patient but hadn't given to her as she got out so quick! The bag of toiletries that came back from RVH with me. 

I will openly admit that part of my motivation came from watching Izz chase a massive spider from behind my bedroom door this morning. We haven't found it..... hubby can play hide and seek with it another time! It's not behind the bedside locker so under the bed is my best bet so far..... it's a divan bed so god knows where it's hiding. I swear big Izz  just took off - I joked that she must've heard it, because she couldn't have seen it behind the door from where she was lying......

At one point my sis came in and I was dusting and crying..... I tried to explain it was because I was doing something normal. It's probably one of the most normal things I've done for months. I'm limited in what I can do.... I don't have the energy or the physical strength to do a huge amount, but I need to start doing more. I had a bit of a revelation. I've known from the start that I can't be lying about and generally I don't. The problem is that I'm in a haze a lot of the time, I'm get physically and mentally tired very quickly and I'm not working..... So I need to motivate myself a bit more. I feel like I just keep getting this wrong..... it's very difficult when each day often brings a different physical and/or mental state. As of tomorrow I'm trying another new way. There will be no slow start. I will get up and get showered before the big man goes to work. I'll take my time, but I'll be up and sorted. Then I'll do something productive for a while. Maybe a bit of writing. There are always other things to be done - phone calls to be made etc. Maybe some light housework. Nothing too much.... maybe a quick whizz around the bathroom etc. I've been doing things like that anyway, but in a very limited way. So I'll do things like that and not from the comfort of my bed. I'll move to the kitchen table (my temporary desk)..... I know I'll need to be careful I don't get carried away as it could be damaging physically..... but I need to get on with things in order to sort myself out mentally.

I'll need a wee doze at some point late morning/early afternoon, but I'll judge that by the time I'm expecting visitors. 

After dinner I think it's ok to relax again. I'll get my exercise at some stage through the day too. A short walk is fine and visitors are often happy to go with me. Then it's ok to chill out and watch the news with a cup of tea. And I think it's probably ok to do that in bed..... if I've done stuff during the day then a relaxing evening is fine. An early night is essential. Then up the next morning..... rinse and repeat....... 

One of the nurses at the City told me a lot of people actually find the routine of radio quite helpful. I can understand that. My GP also reminded me I've gone from being an independent, working woman in a challenging job, to being home, often alone. I knew all this but I think something has kind of clicked into place this weekend...... probably largely because I physically feel a bit better than I have done previously. And also because my sister has a knack of gentle pushing without pressurising (anyone who knows me knows I'm very likely to kick the other way when told to do something..... not really for any reason other than it wasn't my idea! I like time to think and come up with my own plan). So to anyone who tried to tell me all this before and who I nodded and agreed with but didn't really do what you told me to do, I can't only apologise..... I'm stubborn. I had to work this out for myself. 

And we all know this could all change again tomorrow! Sometimes I try new ways and they just don't work for me. I don't know until I get it wrong. Good days, bad days. I know there will still be both. But I also know I won't get any better physically if I don't sort things mentally. I was so full of revelations about a fluid life and being stress free from the start.... then I don't do half of it! I guess when you're used to being a bit serious and stressed, it's hard to switch it off. But I have to switch it off. It doesn't help. Quite the opposite. It's difficult but I'm going to have to learn how to live a purposeful life, but one that is fluid and doesn't involve worry. 

My sister keeps telling me I'm too bright.... I think she's being generous, but there's no doubt I'm an over thinker. I jump 20 steps ahead all the time. I need to stop doing that. I'm hoping I get an appointment for counselling / psychologist soon and can learn some practical ways to help me do this. I've done a lot already - upbeat music, positive self talk, allowing myself a few tears every so often etc, but it's difficult to maintain that state all day every day. I guess I just need to keep putting one foot in front of the other and continue to lean on the incredible support structure I have around me.

It'd be so much easier if I felt the same every day. Unfortunately it's not like that. Sometimes I feel physically better, other times I feel mentally good. It changes from day to day, making it hard to deal with it all. Something that helped one day might reduce me to tears the next. I feel sorry for those around me. They must feel like they have to be mind readers. 

A very long entry tonight. Really all I needed to say was that my sister is the best. She's an amazing person and I'm so lucky to have her. I love her very much and had such a good weekend with her.

Even more "public".....

Woke up this morning excited to spend more time with my sister. Unfortunately I was also very sleepy. So I decided to have a wee doze after breakfast. Unfortunately all I really did was lie there having an anxiety attack. My heart was pounding, my chest tight. Tried to regulate my breathing but just felt like I was holding my breath. Unfortunately sometimes, particularly when I wake up, the enormity of what's going on can just seem too much. I lay trying everything I could to calm myself down - breathing, thinking happy thoughts...... nothing really worked. Eventually I realised going back to sleep wasn't going to happen and that, as tired as I was, I was better just getting up. I had a chat with the big man about it, admitted I was in a bad place, and sat up in bed continuing to try and pull myself back together. Then I engaged in some positive talk....... I said out loud why today was a good day, why I needed to pull myself together etc. Then, once I felt a little less shaky, I got up, put on the happy music, and had a shower. When my sister arrived I had settled but there were still a few tears. Although I'll sometimes still try to out on a brave face, I've learnt that the emotions are going to come out at some point so you may as well just let them out early! Plus sometimes I just can't help it. My sister was brilliant as usual..... understanding, reassuring, but also reminding me there's little point in jumping ahead and thinking about stuff that hasn't happened. Catastrophising is the proper term I believe..... So enough of that nonsense. We agreed a plan - do a few things in the house then lunch and out for a walk. And that's what we did. Portstewart Strand for a walk and to breathe in the sea air. Afterwards we even went for a hot chocolate in a cafe we knew would be relatively quiet. Very, very public indeed!! Truthfully I didn't really enjoy the cafe..... it was quite noisy and there were kids running about. Lovely kids but kids all the same...... noisy, unpredictable....... still struggling with the mini people!! I'm glad I did it though. Another achievement.

After hot chocolate we went to the supermarket again, though I'll confess to sitting in the car today. It's Saturday...... it was busy....... I'd had enough adventure! 

Home and a wee doze and now I'm having a lovely pasta dish made for me! Looking forward to a relaxing evening. Probably a film and some crisps!

From a physical point of view I definitely feel improved. The latter half of the week saw a change. I'd assume swelling reduced or maybe it's just healing. Either way, there's less pressure and my thinking is less cloudy. I still get tired and can clutch for the right words at times, but it's nowhere near as bad. Unfortunately the flip side of this seems to be that my thinking skills have improved..... good if you want to have a conversation or read a magazine...... not so good if you've got something negative in your head and are stressing about it.

The wound is healing well. I'm very careful with it..... I don't scratch or pick, despite the temptation! Washing my hair remains challenging, and it often looks a bit greasy because I can't get into the roots properly. But I know none of my friends or family care about things like that! I could probably flip my hair over the wound now and cover it, but I want it to heal well so I'm not taking any risks. I'm likely to loose some patches of hair during radio anyway, and then there could be chemo, so there's little point trying any new looks just yet......

I'm still frustrated at the constant changes. Every few days seem to bring a new state, either mentally or physically. I remain very up and down emotionally.... and there are weird paranoias that creep in...... I overthink. No change there then! My New Years resolution to 'not think so much' has become even more relevant now! But I'm still awful at it. 

Thankfully I still have a wealth of people supporting me with positive messages. I also have my hardcore, inner circle that just selflessly give me anything I want or need. 

I said at the start of this that my life would be changed forever, and that is undoubtedly true. I kind of liked my old life..... but there's little point looking backwards. Life changes. It throws stuff your way. You just have to handle it. I'm not sure I always do that particularly well...... but I do it. 

Right, I'm of to enjoy an evening with my big sister. The best person on earth. Xxxx