KNOCK KNOCK!!

No sooner had I finished my last entry, things went wrong again.......  I fell asleep and then woke feeling awful. Head thumping and shaky. I tried to get up but started wretching, lashing in sweat and was completely dizzy. I was unsteady, too hot, agitated and feeling awful. And panicked, heart pounding.

Trying to get was futile so I lay back down, desperately trying not to be sick. Then the fitting started too........ not massive seizures, but definite strong facial spasms. I called nurses who worked with me and I rang hubby to come down. When I arrived I had another facial seizure. I’ve had a couple more since and am feeling weak, too hot, dizzy and a bit freaked out.

So what’s going on? Medication tweaking we think...... removing the drug that was poisoning me has necessitated tweaking other things about to keep tumour symptoms managed. I’m very sensitive to medication, which is why I hate taking it. The weather has undoubtedly played a part too....... creating additional pressure in my head. 

It took all day but I’ve just managed to get up and use the bathroom with hubby’s help, and am trying to eat a bit of toast.

I’m ok and I know this is the way it will be, but it’s hard not to feel completely licked yet again. I had been feeling so good, so strong........ confident. Arrogant? Pride comes before a fall again......... I know I can control and fight this tumour, but it seems she’ll fight me back at times.....

Knock, knock, still here......

With all the melodrama of poison and near death, the brain tumour has been the least of my worries over the past month! In the past few days I’d had a few chats with doctors and family about how we continue to manage the original problem of the tumour moving forward.

As if right on cue, she decided to remind me she’s still there. Not in a dramatic way thankfully.  Just a little ‘hello, remember me?’ 

For years and years I have experienced headaches. I now know why, but I’ve always known they can be very influenced by the weather. A storm or a day of heavy rain can completely knock me off my feet, causing a pounding headache, flickery eyes, a bit of tingling and sometimes mild twitchiness in my face, tiredness, and what I would generally describe as additional pressure. Sometimes it includes a few flickering flashes in front of an eye. 

Obviously we now know those things were tumour symptoms. Seizure activity. It has never really stopped over the past year, although has been fairly undramatic. More annoying than anything else. There’s nothing worse than a pounding ‘thunder headache’. Over the years I’ve just become accustomed to it. Like many migraine sufferers (which is what I thought I was!), I darkly worked through feeling like crap.  I never took a day off work, although was forced home early on rare ocassions. When I went to work in Belfast, going home early wasn’t even an option, as I wouldn’t have been fit to drive. I often ended up staying later so I’d be ready to tackle the drive home! 

Last night I couldn’t sleep. I couldn’t get comfy and my head felt heavy like someone was pushing down on it. I was up every few hours and not as steady on my feet as I’d like. I think I finally fell asleep around 5am. Waking at 8am, I knew I’d had some sort of seizure activity in my sleep. I don’t believe it was any sort of major fit, more a storm in my head. I didn’t need to open the blinds to know it was pouring outside....... the weather outside was replicated in my head.

I’m not massively worried by this. It’s disappointing and I’m annoyed by it, but I know it’ll be a case of working to get my epilepsy medications right. I’ll do that only with thorough advice seeking and questioning......... can’t have them poisoning me again!! 

I have a headache, I’m tired, I’m a bit dizzy, I have a few funny flashes of lights and weird tingles, but I’m mainly still just thinking happily about getting home tomorrow! 

Things remain great. I’m doing really well, have survived poisoning and am getting stronger by the day. Unfortunately there’s still that pesky tumour....... it’s a lot smaller than it was and hasn’t shown any signs of progression. It’s behaving. But it still gives the odd wee wiggle, just to say hi....... It’ll be a quiet day today for me! Xxx

Get the yellow ribbon out again!

Home on Thursday! Monday would’ve been a month in hospital so that’s an anniversary I wouldn’t want to have hit!

I feel great. Physically still some work to be done, but mentally in a fantastic place! 

Nothing like nearly (but not quite!) dying to put you on a high! I feel almost invincible. Brain tumour?? That’ll never take me....... poisoning couldn’t ffs! 

Out of hospital on Thursday. First day of the rest of my life! Xxx

The line in the sand

Time to move forward. My last entry told the story. There are some errors with timings and things that need checked, but the basic story is told. The levels of drama now need to come down because it’s embarrassing to me and it’s also important family, friends and I focus on moving forward and get over some the trauma we’ve just come through. 

As things stand physically I am doing well. Mentally it’s been a trauma, but I’m confident in my ability to get over it.  Friends and family continue to be my support and keep me laughing or delivering hugs as needed. I still have a brain tumour but it has not progressed. I am no longer being poisoned so not at imminent threat of death. 

I hope to be discharged from hospital towards the end of the week. In slow time, in a calm manner, I will then gather all my information and start the process of making complaints in order to ensure no-one else can ever go through what we have. To ensure lessons are learnt. I will do this slowly and steadily. 

There’s been enough drama and things need to all calm down a bit now. The story isn’t over, but we’re through the climactic drama section now. 

Hopefully that makes sense. Time to calm things all down again. I’m not comfortable being associated with that level of melodrama and craziness. Let’s go back to laughter and enjoying life. Beach walks and books about trees. Back to the Riverbank. Xxx

January

“January. Sick and tired, you’ve been hanging on me” 

Seems I only thought January 2017 was a poor month........... January 2018 makes last year look like a doddle! 

A huge amount has happened and I’ve been unsure what to write or how much to say, but I think the time has come to try and summarise, with apologies for any duplication of information already in previous posts. Truthfully, I’m also a little embarrassed by the pure melodrama of the whole thing. We all love the odd bit of dramatic writing and hearing a big story, but this one makes me feel embarrassed. A part of me is cringing, but it’s a story that needs told too......

As you know, in January 2017 I was unexpectedly diagnosed with an incurable brain tumour. Barely having time to accept the information, I was then quickly thrown into a treatment cycle. In Feb/March in underwent two brain surgeries at RVH (the second an ‘awake surgery’ and left behind a bit more mental trauma). On 22 February I took a seizure in RVH and was put onto an additional anticonvulsant medication called phenytoin. 

In March I was sent to an oncologist who I instantly disliked and found to be arrogant and unprofessional. I spent a long time berating myself over my feelings for her, and eventually persuaded myself she wasn’t so bad and that we didn’t need to be friends anyway. I doggedly opted to do what she told me to do and trust her as the expert. Despite sometimes feeling unsure, I gritted my teeth and committed to doing everything I was told. I completed 30 radiotherapy treatments, carried out every day for 5 days a week, for 6 weeks. I felt side effects, but generally ok and was doing well.  During radiotherapy I met with my oncologist once. After I became upset she questioned my emotional ability to cope and took me round to see the “girl who does the touchy/feely stuff”.

In April I had a brief meeting with a neurologist. Unfortunately it seems he was also very busy, so my appt was mostly spent with a young registrar who spent much of it looking at WhatsApp messages that kept pinging up on her phone. I asked about the phenytoin and also the other anti seizure medication I was on (keppra), expressing my concern about long term usage and side effects. Attempts were made to get rid of the keppra, but I found the side effects intolerable and refused to change.

In order to reduce constant trips to Belfast it was agreed I would transfer to a local neurologist, who I met with in July. There was a discussion about medication and some dosage changes made. I was told I’d get a further appt out to review. This appt never came.

Then I committed to 6 chemotherapy cycles, to be carried out every 6 weeks starting on 4th July. The first one went ok. Cycle 2 however just kept getting delayed. My blood results weren’t good enough for it to be started, so I had weeks of travelling up for treatment then not to take place. My sister faithfully travelled over from Manchester every week to take me up and inevitably bring me back home without having being treated. During this time I rarely saw my oncologist, and when I did it was abundantly clear she had no time or interest in anything I had to say. Eventually I reached an agreement that my bloods could be taken locally the day before proposed treatment, to save my sister’s constant travelling back and forth. Chemo cycle 2 finally began in September.

Attempts to have cycle 3 went the same as cycle 2, with constant blood taking and being told the results weren’t good enough. Finally one Monday in November I got the news that my bloods were up and we were ‘good to go’. My sister duly travelled over and the next day we went up to start cycle 3. Bloods were taken again and then we were brought in to be told by a young registrar that things had changed and my chemo was being permanently stopped. I was totally caught by surprise and was annoyed the news had been delivered by someone other than my own oncologist. I had seen my oncologist around the clinic, along with my allocated clinical oncology nurse (another woman I had barely seen or spoken to) and questioned why they weren’t talking to me themselves. The poor registrar spent much of the meeting running in and out of the room, getting answers to be delivered back to me. 

We were told the next step was another scan and pushed hard to get this done as a matter of urgency. It was carried out on 22 Nov and I was told I could make an appt with my oncologist if I wished to go through the results!! I made the appt but it was for 18 January 2018 so there was quite a wait. Just prior to Christmas I received a phone call from the oncologists secretary to pass on the news the scan results “looked good” and that I should relax and enjoy my Christmas. In the end up I didn’t get to this appt anyway. By that time I had been admitted to Causeway. Transport was arranged to take me to the appt but ice caused a delay. The hospital phone to let oncology know I’d be late. We were told not to bother coming as we wouldn’t be seen if we were late! 

As time had been going on, and particularly in the run up to Christmas, I had found myself developing various issues. These were reported to a number of people including GP and oncology Helpline. Each was dismissed, often as emotional or anxiety based issues. I was told I no longer had access to the oncology Helpline as I wasn’t getting chemo anymore. 

I fought hard to stay physically and mentally well, often forcing myself to go for quick walks despite being very unsteady on my feet. By Christmas I’d begun to veer off to one side at random. I meditated and had aromatherapy and reflexology regularly to prevent panic attacks.

On 6th Jan my left leg simply wouldn’t carry me. I was tired and confused. My sister and husband took me to A&E who checked me over and sent me home. 

On 8th Jan I could barely stand up. My eyes were rolling in my head, I was dizzy and sick. My husband and son again brought me to A&E. A local consultant discovered levels of phenytoin in my system of 68 (over 50 usually result in coma and I was told they’d never seen anyone with levels so high that wasnt on a ventilator). I was admitted and work began to get the phenytoin out of my system and control the symptoms. A scan was authorised by the local consultant after my oncologist refused to get one done. Thankfully this scan showed no progression of the tumour, indicating my condition was due to the phenytoin levels. Macmillan became involved and local consultants have worked tirelessly alongside them. At one stage my family were told I was dying due to the poisoning, and I can honestly say that I felt the same way. I tried to stay strong and keep laughing, as the whole thing seemed so unbelievable anyway. Sometimes I knew I was dying, sometimes I trusted the local team wouldn’t let that happen. The latter was correct.

What a drama, huh?! So where are we now? I’ve been in hospital for 3 weeks. I’m very hopeful to hear today that phenytoin have significantly reduced, if my symptoms are to be gone by. I have had friends, family, colleagues and nurses in tears at the trauma of seeing me near death. It has been horrific. I am relieved and a bit overwhelmed by what’s happened. I am furious that such mistakes could have been made and that I was essentially poisoned by the ‘team’ supposed to be looking after me. I feel aggrieved by the lack of compassion and time. I feel sad for those who’ve been traumatised by what has happened, in particular my husband, son and sister. I feel alarmed that this level of mistake could be made and know I have a duty to progress some form of action to ensure it never happens again.

I think that about covers things. There is recovering to be done, both mentally and physically. There is information to be gathered and a report to be drawn up. There is a course of action to be decided upon.

Who needs soaps when real life is so dramatic? Sometimes I feel like I’m about to have a Bobby Ewing moment,  but unfortunately that’s not the case. 

So that’s basically the story. Priorities now are recovery and action, whilst maintaining calm and relaxation. 

Xxx

Absorbing.....

You know when you hear really shocking stories of mistakes, incompetence and arrogance within the Health Service? I’d always have taken them with a huge pinch of salt. 

Working in the public sector, I understand the lack of money and often unrealistic expectations of the public. I also understand how things can go wrong, often due to ‘siloed thinking’.........everyone doing their own job and no more. Sometimes I even have sympathy for this because I know the people who tend to grip situations and do the best job, are also the ones who tend to end up carrying everyone else and having more and more put on their shoulders. I understand the need for sometimes having to say ‘that’s not my job’ and for forcing others to take responsibility for their role, in order to not become the one who’s always ‘put upon’.....

I would never, however, shy away from speaking up, taking a grip of a situation, or take on others’ roles if I thought it wrong not to. I would never play games and dig heels in so far that a public service became inefficient and someone suffered as a result.  

After almost 3 weeks in my local hospital, I am finally starting to come around from the life threatening situation I was put in as a result of so-called experts. At best there was siloed thinking, at worst there was gross negligence. There was without doubt arrogance and disinterest.

I am still trying to understand exactly how things went so spectacularly wrong, looking at roles, and deciding on the best courses of action. Most importantly at the moment I’m recovering from being slowly poisoned by a drug I should never have been left on long term without proper monitoring, recovering from the horror of near death for the second time in a year (this time at the hands of those supposed to be helping me). Building strength and thinking about what comes next.

For the second time in a year, consultants at my local hospital have saved my life. By paying attention and joining things together. The added support of Macmillan means I am starting to move upwards again. Thank God for the medical professionals that remember the Hippocratic Oath. Forever grateful for them catching me yet again.

Holding pattern

Don’t worry, sorry for radio silence. Keep circling, be assured I’ll update as soon as I can.  My main problem is that I wouldn’t know where to begin. A lot has happened, there’s a lot to digest and I’ve also been very unwell.  

But as ever the Home Team have worked tirelessly and, with the added support of Macmillan, I now find myself getting over the latest trauma and being pulled back up onto my feet. 

The last few weeks have made this time last year look like a total breeze! But we’re hopefully back on the up now........ fuel has been dumped and we’re circling again, ready to land. 

Lots to say and stories that’ll both horrify, warm the heart and hopefully cause a few chuckles. 

Roulston Force One overhead. Cage secure xxx

Seizureversary

Yesterday marked one year since this started. I can honestly say that some of what I went through yesterday was worse than the original seizure! Thankfully I remain safely wrapped in the metaphorical arms of the people who have kept me safe since that first day. On the same ward , with doctors and nurses that I wouldn’t be alive without. 

As with most jobs, it’s often the fancy geams up in the Big Smoke that get praise and recognition. They are often the ones people look up to and see as ‘important’. And as with most jobs, there are people at local level that are actually making the difference. 

The fancy teams  in Belfast are undoubtedly experts in neuroscience and I’m sure they have done amazing things in terms of getting rid of as much of my brain tumour as possible and keeping what’s left under control. Who couldn’t be grateful of that, not to mention admiring?   But they are also the ones that are completely nonplussed when you can’t stand up and start being sick. They won’t wait if your transport is delayed due to snowy weather. ‘Squeezing you in’to another slot will take weeks. You might have been psyching yourself up to discuss Post treatment scan results and be left even more stressed and upset at a time when you least need it. They are the ones that won’t ask for another scan even though you’re hugging the floor, terrified. You are a number and you’ll know it unfortunately. What they do is both admirable and valued, but support doesn’t just take the form of surgeries and pills.

Which is why I am so grateful I entered the system in such a shocking and rude way.  There’s a great video on YouTube of the singer in a band. He’s up on shoulders and someone throws a plastic pint of beer at him. He turns and catches it, before take a swig. You can guarantee he’d never have caught that pint if he’d known it was going to happen beforehand. He’s just pulled off the coolest move ever and is a sensation! Think of me and my brain tumour as the pint......safely caught. But could he ever pull that move off again? The answer appears to be yes., just in a less dramatic way.  This time I started falling over. My legs wouldn’t hold me and I felt sick and confused. The fancy team weren’t too interested, which I guess is cold comfort in some ways. But I was still left unable to walk, terrified and not understanding what was going on. Family brought me to my local hospital as I could hardly keep my eyes open. Instead of being thrown I was gently passed. The same team from a year ago took me in their arms and kept me safe. They showed the qualities that surely should take people into medicine to begin with. They helped and they did no harm. I couldn’t walk or see straight and they did everything they could to find out why, whilst taking care of me. They refused to let me out of their care until it was safe to do so. Just as they did a year ago.  Nobody wants to be.in a hospital, but it’s given time to get me stabilised again, and ensure I can go home safely to get on with a very changed life.

As usual, my support cage  has bolted in tight around me both in terms of medical help and family/friends. A year of hell and a year of amazing happiness. Like everyone else’s year really! Xxx 

Be the tortoise

“Be the tortoise, not the hare” Wise words from a friend of mine.

You know when adults run sometimes we take off so quick that we fall over our own feet?? I’ve seen my dog have the same problem on the beach (lurcher. Short bursts of lots of energy. Long legs). 

Year One doesn’t give much time to be the tortoise. There’s plenty of people about to stop you falling over your own feet, but you’ve got to keep moving...... surgery........get up, keep going........... radio........get up, keep going......... chemo......... get up, keep going.............. end of treatment........time to see how you feel......... face in sand. Not buried, firmly face planted. Well, ok, probably had been buried a bit too!! 

This weekend marks my one year seizureversary. I’m doing very well generally, however now I’m having to face my life post treatment. You don’t scrape back up and go back to your old life when you’re still living with a brain tumour. I liked my life before, but have been willing to accept some necessary changes  in the last year.  Up until recently I’ve mistakenly thought if I fought hard I’d live a new life, but one where I’d largely chosen the changes made. Go to bed earlier because you’re tired, get plenty of fresh air to keep the mood up. What I hadn’t really accounted for was that pesky tumour! When something is in your brain it can touch different things and cause different things to happen.  After a year, I’m faced to force what those things might be....... safe in the knowledge that nobody really knows because we’re all a bit different)..... at the moment I’m often dizzy and very weak. I’m tired and experiencing wee tremours and pins and needles. I’m not safe to walk without assistance and I often feel a bit sick. I have headaches. Sometimes my speech is a bit slurred and I can experience ‘tip of the tongue moments’, where I know what I’m trying to say but can’t quite pull the thread out of my brain. I’m a bit skinny and a bit fragile.  But I’m safe in the arms of the team that helped me that very first night. My knights on white horses. I say that plural because it is a whole team. My Support Cage. Still strong, a year later.

And guess what?? I’m alive. I’m not in horrible pain. I am completely mentally sound and still seeing goodness and humour all around me.

Now the tough bit really begins........ living with a brain tumour. But now I will be the tortoise. I am walking with a stick and won’t get discharged from hospital until I’m safe to be home and the necessary plans are in place. I am now properly disabled.  I’m not sure why I didn’t realise this was ahead......... probably because I refused to find out. I was scared if I read up too much that I’d give myself an excuse to not fight as hard. Why would I think that?? It certainly hasn’t taken away who I am as a person or the strength of support I’m surrounded by............ 

Yes, it’s fair to say I was a bit naive. I wasn’t a tortoise, I was a hare missing a leg who refused to stop running. Now I accept I’m the tortoise and I’ll learn to enjoy that pace.  

Slow, but not stopped....... life is still good and there’s a wedding to organise!

Today’s song......

One finger, one thumb, one arm, one leg, one nod of the head, keep moving! Xxx

Willow the Wisp

“an atmospheric ghost light seen by travellers at night, especially over bogs, swamps”

I’m not in a bog or swamp, nor was I lit up, but I can sure appear at night......... I’m also quite sure the weather has a major impact on me.......apparently it rained all night. I can still hear the wind whistling round the building and  have been joking about The Wizard of Oz and expecting to see a cow fly past the window at any moment!

Last night I woke from a deep sleep to a huge amount of noise. There were alarms and people, shouts and cries. I became alarmed and I felt like I was surrounded by alarmed people. In my dreams, the hospital was being evacuated because of a fire........ 

Everything needed to calm down. So I did what I’d have done for myself, but I generously included the entire ward...... I put on an audio version of the first chapter of Wind in the Willows to take us all back to the Riverbank!! I turned it up full boot so everyone could hear it and settled down to sleep again. I turned it off when I heard a doctor welcoming a new visitor onto the ward. And then I started to wonder.......... had the noise just been her being brought in?? Was I doing a weird sleep thing?? I looked at the time to discover it was only half past midnight...... hmmm. 

Medical staff left again and I loudly asked the ward “Do you want the story back on? I’ll take three yes’s as a majority!” 

Silence

What have I done?? I’m affronted! Do the whole ward now think I’m completely crazy?? 

Then I realised they were all asleep. Quietest I’ve heard the ward since I arrived! No alarms, no shouts, no cries. I went back to sleep, safe in the knowledge that was either the best or the worst ward mate ever!! 

Everyone is still asleep now, after 9am. All the lights are on, nurses are doing obs and someone’s alarm played the radio for 10 mins. They’ve either relaxed and are enjoying a catch up on their sleep, or are totally exhausted after being woken in the middle of the night by a crazy ward mate........ Lets pretend the first.....!! The rest of the story may have been a dream too, but as vivid a dream as ever had.

In my defence, yesterday was yet another big day for family and I. Scan results were delivered to me in general terms by local doctors. They’re good! “ No further degeneration”....... the best result we could’ve got, short of miracle. 

I also met and chatted with a Macmillan expert and have a much better idea of what this whole thing actually means, one year after diagnosis. I’ll accept that this has probably largely been my own fault...... I heard the diagnosis but hadn’t moved far enough into ‘acceptance’ to be able to really consider how my life might change. I think it just all happened so quickly that I thought it would stop that way too.  I saw it as a ticking bomb that would just explode some day unexpectedly. It didn’t really dawn on me that it could move and be affected by other things, leading to symptoms I’d never had before.  I’m currently prone to being very dizzy and need a stick to prevent tumbles on the very short walks I can manage. But that’s this week........  next week I could be out for walks twice s day and out every day for lunch!

We’ve got a lot of thinking to do again. Questions to ask and answers to consider. In the short term I am being kept safe by the people who kept me safe from day one. Personal relationships are important to me and I’ve never been more grateful for decent people than I’ve been this last year, and am likely to be in future ones. My local hospital contains some of the finest examples.

There’s a lady across from me who spends much time shouting out, distressed. I swear earlier I heard her laughing and shouting “Ah oh!” ........ she’s the calmest I’ve seen her to date. Sometime we may find out, but I think her and I might share literary tastes. I hope so. Xxx

Causeway cuddles

Where was I? I can’t remember. It doesn’t really matter. More importantly, where am I now?  Safely ensconced in the metaphorical arms of my local hospital. Almost a year ago to the day, they brought me in and kept me safe. Now they do so again. After two significant turns, I was admitted back onto the ward where my journey began this time last year.  A close colleague of my original consultant took control and put me first. 

I’m not sure, but my instinct is that there was a bit of a public sector budget row....... whoever refers for the scan, has to pay? 

I’m probably outside the time frame for another Oncology suggested MRI, but I’m under their care so why should somewhere else pay for it? That’s my thoughts (as someone who works in the public sector) although I caveat that I could be totally wrong! 

Reality is that we’re broke. Not just the Health Service, but everything else too....... policing, education........ As the petty rows continue, the community pay the price in so many ways. 

Anyway, that could all be wrong, but I’m certain there isn’t enough money!! I’ve watched medical staff run ragged and used to see it in policing day and daily.

Regardless, there remain good and decent people who just want to do their jobs. 

I was admitted to hospital on Monday night. At that time I could hardly walk, could hardly see straight. Later I added being violently sick onto the list. But thankfully by that stage I was safe on the ward with many of the same nursing staff that looked after me at the very start. The ones who saved my life at the start are still doing so. They just often don’t get the same glory as the specialists.

I’m currently awaiting transport to another hospital for an MRI. I can walk carefully with the aid of a walking stick and monitored. I’m dizzy and sick without medication. The hope is that a virus hit an already weak body. The scan is the only way to rule out progression of that pesky tumour!  

I’m confident it’s definitely a virus and that the tumour is calm like the rest of me. Let’s get it confirmed. 

Usual love and thanks to friends and family for help and support. One even sent a supermarket delivery of tea, coffee, biscuits etc to nurses as a thank you! I know some very cool people. Xxx

I was fine!

I was fine this time last year. Until I took a seizure in my sleep and ended up with a diagnosis of an incurable brain tumour. I went from being fine, to being really seriously ill overnight.

I spent a year doing what I was told. I did the surgeries. I did the radio. I tried my very best to do the chemo.i worked particularly hard on relaxation.

I had ups and I had downs. I met some wonderful people and maintained a good attitude as a general rule. Sometimes I even started to believe there might be another outcome. I steeled myself and, with the help of my wonderful family and friends, we fought.

Almost a year to the day later........ I was fine!! Feeling a bit battered, but fighting through. A bit up and down, but generally doing as well as anyone can. 

I was fine! Then my legs decided to stop working. And my head started to spin uncontrollably. I went from being fine, to being really seriously ill overnight.

I’m currently in A&E, waiting for someone to claim responsibility for me.... My local hospital are being very gracious, but I get the impression there may be a lot of hot potato throwing being done by the Belfast potato specialists. My rude and sudden entry into the system has meant no-one really feels they  ‘own’  me.  It’s complicated snd all that....!

The result being that I ended up lying on a bed in my local A&E, with already completely overworked staff trying to keep me out of a germ filled hospital, while getting someone in the Big Smoke find someone with an interest in CT scans. The outcome Being admitted until an MRI scan can be arranged. When there’s a bed.  

As from the first moment, I’m fine and then I’m not fine.  I’ll do whatever I need to do, but have no clue what that is.  

And so we rumble on. The hot potato. Causeway say this, RVH say this...... if I didn’t have a slightly stroppy sister, I might’ve been pissed off. As it is, I’m calm and patient, letting others fight any battles needing fought. I’m busy fighting my own battle......I can’t take on the Health Service too.  Xxx

Work, damn you, work!

I actually said this out loud to myself today. I was sitting on the floor at the time, trying desperately to carry a sandwich into the other room. The sandwich I’d  made. After I’d finished washing the dishes. A reward for a morning spent working. (The sandwich, not the dishes.....!) 

Look at me!  Gently, easing.........but finally doing something more productive than researching trees......  

turns out, work isn’t nearly as much fun without the people. But look at me!! Being all worky and stuff!  The exasperated request to ‘work’, was to my left  leg (that had decided it wasn’t going to). 

“Have you had any wee falls yet?” Is a question I’ve been asked all year. Like so many things, I’ve often had a run of  feeling good prior to an unexpected setback. Earlier in the week I had my ‘first wee fall’...... like a self fulfilling prophecy, I took a tumble. It was sore. Still is, but it’s important to keep things in perspective........ a grazed knee does not come close! As with all falls, the worse thing is the fright and embarrassment left behind. I was also justifiably consoled by my excellent sliderobe avoidance..........

I’ve had a few near misses this week but have heeded them. Focus remains on getting built up, with food and whatever light exercise I can safely do. Challenging for someone who’s giroscope is a little off........ but we’ll get there! Full recalibration through gentle adjustment...?! Time, time, time.......  I know it’s on my side, but I’m so impatient sometimes ! We’re nearly at a year...... my seizureversary! Way to go xxx