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
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