Amitryptyline

Bugger!

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

Well I didn’t think I could hate 2020 anymore than I did last week and bugger me it had some more treats in store for me. Sometimes even I find it hard to believe the stunts my body pulls.

I managed to have my first migraine with a proper full blown aura in 6 years on Friday morning which takes some beating. I was reading the newspaper online when I became aware of the fact that my left eye was struggling to see the words on the screen, in fact words were missing and the screen seemed ultra bright. I knew straight away that it was probably a migraine but I thought, it has been so long. Maybe it is the sun shining through the window hitting the screen and that’s why I can’t see? I struggled on for a few more minutes the weird thing was when I was looking at the screen my vision was fine. Then I looked across at Mr Myasthenia Kid and half his face was missing. At that point there was no mistaking this was a good old fashioned migraine. The last one of this type I had on my 40th Birthday how’s that for timing?

Hubby immediately sprang into action and got my migraine grab bag so I could take all my meds and then go back to bed. I absolutely hate the aura stage of a migraine which for me can last up to an hour before the headache begins. During that hour the visual disturbance just gets worse and worse, even with my eyes closed in a dark room. There is no escape from it and it leaves me feeling terribly disorientated. I am so grateful to have finally been prescribed sumatriptan, it is my wonder drug as it really does just halt the migraine in its tracks. Some days I feel as rough as a badgers arse, for those of you outside the UK this is what a badgers arse looks like. Other days I may feel a wee bit groggy but after a few hours I can do some bits and pieces and I am not totally wiping out a day. It really has been life changing. However the number of migraines I have been having lately has been averaging around 2 a week and I am heartily sick of having them. Of course it is now leading up to the window that always means migraine time the 18-22nd of each month. I am hoping ( god loves my optimism) that this month I wont get it but who knows? I have had more than my fair share these last 4 weeks.

So that was Friday, which was then followed by an eventful Saturday. About an hour after I got up on Saturday a nice bout of Vertigo started. The room did one spin every so often and when I walked / stumbled really anywhere it felt like I was on a boat. Thankfully I always have a stash of meds nearby for this and to be fair it has been quite a while since I had the spins. I sat down with a coffee and tried to relax and let the medication do its thing. After a while I was bored so I decided to go and sit out in the garden. Big mistake as I went arse over tit over a plant pot ( concrete ) that Mr Myasthenia Kid has so helpfully left in the middle of the patio. Had it been a normal day I may have been able to right myself but with vertigo? Not a fucking hope – apologies for the language today it is just happening. So I tumbled across the patio all the time trying to right myself without success. I realised at this point that I was going to end up crashing through the fence and falling 4ft down onto the patio in front of our shed if I didn’t stop staggering, so with the fake turf on top of the gravel I aimed my dive onto that figuring it would hurt a lot less than landing on the gravel.

Gracefully I hit the deck and if you believe that, you will believe anything. Immediately I was in a world of pain, both wrists, my left shoulder, my left knee, my left buttock and all along the left side of my back.

The only reason I didn’t scream obscenities out loud was because the neighbours children were playing in the garden and I didn’t want to teach them anymore bad language than I had already. Most of it was aimed at Mr Myasthenia Kid for being so stupid as to leave a bloody plant pot right in front of the patio doors! When he knows my vision is a bit dodgy and I can lose the sight in one eye if my ptosis strikes and I can’t open my right eye.

So all my plans of sewing etc went out the window. Instead I spent the day dosing myself up on pain killers and sitting on hot water bottles. My ankle blew up like a balloon, i had to take my slipper boots off because it got so large it was starting to feel constricted. I was bloody furious because I needn’t have fallen and I hate feeling vulnerable like that. I forgot to say the minute I landed on the artificial grass Dembe came rushing over showering me in kisses checking I was ok. Initially he wouldn’t let me get up until he had checked that I wasn’t seriously hurt.

Sunday was spent doing crochet very slowly as my wrists were still throbbing from the fall and my left leg was elevated all day due to the swelling. I still hurt all over but at least nothing was broken. 

Thankfully the vertigo was gone by Sunday morning, my leak is still causing me problems. It is still there and some days the head pain is worse than ever. I am still attempting to pace myself by lying down every few hours but it is difficult when I get absorbed in something to remember to. I only remember when my head starts feeling like it is crushed in a vice and all screens seem to be burning the back of my retinas.

As I am the worlds worst person at pacing myself due to the fact that giving up work due to my disabilities has made me feel like I contribute nothing at all to society, I push myself constantly beyond what is sensible and then end up paying for my stupidity. I feel that everything I do has to be better than everyone else so that people don’t feel sorry for me and that I don’t look weak or vulnerable. The fact that the falls and faints have become much more regular occurrences is making me feel very vulnerable and it is doing a number on my mental health. I have always struggled with never ever feeling anything I do is good enough and probably also a bit of impostor syndrome (find out more here. ) People can tell me that what I have sewn or embroidered is the best thing ever, my blog could be awarded a Nobel prize for literature but I would still be waiting for one person to say that my work is shit. It is hard to live with the constant fear that people will discover that what you do is actually crap. Add in physical disabilities and you have a wonderful mixture of weird ideas running through your head, not only are you not good enough creatively but you can’t even do the stuff normal people do. It makes you feel less than. Which is why I probably do push myself too hard to prove I am worthy of my place within society.

Word for this week is Bugger!

A lovely photo of Dembe to lift your spirits

 

 

Brave

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

I don’t class myself as brave although I have had plenty of people in the past tell me I am. Most of the time I am a quivering wreck, my anxiety has been awful of late, if there is nothing to worry about my brain will find something and keep me awake at night about it. Dealing with people, crowds, noise or even just being in the outside world alone fills me with terror. Yes on many occasions I force myself out of the house and attend appointments alone, dropped off outside but once out of the safety net of the car I am on my own. After over ten years of being pushed everywhere in a wheelchair ( I don’t have the strength or the capacity in my joints to move under my own steam without dislocations and severe pain, oh and the risk of fainting) today I took a brave step into the outside world alone and went to my hospital appointment by myself. I have never done this. I have never seen a hospital consultant alone in the whole history of me being sick. This is huge.

Now a few people have got hung up on the fact that I didn’t travel the hours journey to the hospital by myself. Having pointed out the fact I don’t do crowds, loud noise, bright lights or social situations alone, what the hell do you want from me people? Public transport is shit, I just couldn’t have done the journey on my mobility scooter from my town to the city. Taking the bus or train would have meant multiple changes in places I don’t know. I’d have had a fucking heart attack, there isn’t enough valium in the world to get me through that. 

This is the person who freaks out about calling for a taxi let alone getting in one. One small step at a time folks you don’t run a marathon the first time you decide to have a jog, so why the judgement about the fact I didn’t travel alone? It was still fucking huge for me to navigate the hospital alone – one of the biggest in the area, to a clinic I have been possibly twice before ( as it location changed within the hospital).

I also need to point out any medical appointments set off my anxiety and can lead to me not sleeping properly for several weeks before I go. Due to the horrendous treatment I have suffered at the hands of the medical profession in the past. So I may go to doctor’s appointments at the gp surgery by myself and the same for dental appointments but it doesn’t mean I am happy or confident doing it. I hate it. It has got to the point where I just don’t like, feel / safe or comfortable if I have to leave the house by myself. My home is my safety zone where I control the light, noise, amount of people etc

So for clarity I travelled in our car for an hour with my husband Mr Myasthenia Kid and our trusty sidekick Dembe, who is in training to become my assistance dog and a bit of an emotional crutch as well to be honest. We tried to get parked up but there were no spaces, so hubby had to drop me off in front of the hospital, he set up my mobility scooter, helped me get on and left. Yes folks he left, I had the appointment letter in my hand and off I went on my adventure on a mobility scooter I have also never used by myself before – someone has always been with me. So many hours were spent last night panicking about it breaking down, knocking stuff over and getting lost. This hospital is not very user friendly and it is very easy to miss a turn and get lost.

This hospital is one of the largest in this part of the country ( South West of England) . Its main entrance goes on forever shops, coffee shops, stands for charities etc and hundreds of bloody people. Who’s walking speed resembles an extra on the walking dead ( For the uninitiated a Zombie). I am not massively confident on my mobility scooter owing to the fact on a couple of occasions I have only just managed to avoid being headline news in the locality…..once I nearly went over the sea wall because I was chatting and not looking where I was steering and on another occasion I moved the control in the wrong direction shot off the pavement into the path of an oncoming car. Despite the look of abject horror on my face I got a mouthful of abuse from the driver ( and I can’t blame them for that). So my nerves were a little frayed already and I had been having nightmares about old people going down like ten pins in my wake.

It actually went a lot smoother than I had imagined it would. That wouldn’t have been hard though as at 2am this morning, I was going over every possible scenario in my head. Members of staff asked me if I needed help ( that was probably the look of sheer panic on my face) asked if I needed doors held open, lifts held. In fact being alone on a mobility scooter I got more help than when I was with Mr Myasthenia Kid in a wheelchair. Which strikes me as a bit bizarre as even with him we still needed assistance with doors etc.

I checked myself in at the clinic and tried to find a place where my scooter and I wouldn’t be in anyone’s way. One of my major gripes with hospitals is that despite it being quite obvious that people with disabilities will use them, they do not provide waiting rooms with a space where you can park up a wheelchair or mobility scooter where you are out of the way. It seems a bit fucking ridiculous if you ask me that hospitals seem to not think about accessibility when it comes to their outpatient departments. They ram the waiting room spaces with chairs but when you bring your own it’s a bit of a bloody nightmare to find somewhere to park up and not cause a major obstruction for staff and patients. Anyway rant over. I found somewhere that I thought was out of the way and thankfully it was.

My appointment went well, managed to get myself back on some medication to prevent my migraines as the amitriptyline isn’t doing its job, I have had two migraines in the last two weeks. Plus I really shouldn’t be on amitriptyline with PoTs. 

I managed not to crash into chairs etc as I reversed out of the room and turned outside. I did however manage to get lost on my way out of the hospital. Probably because I got cocky it was easily remedied with reversing and taking the turn I missed. When I got to the foyer I was just getting ready to find a spot to stop and get my phone out so I could ring Jay and left him know I needed to be collected, when I heard him say to Dembe “There’s mummy look”. Dembe was so well behaved, he came over walking beautifully on his lead and then jumped up and gave me lots of kisses. I can’t tell you how glad I was to see them both. I was no longer on my own and I could make my way back to the safety of the car.

It was also the first time since we had started training that he has walked with Jay and me, when I have been using the mobility scooter. He walked beautifully and I could fully concentrate on driving rather than worrying that I was going to run him over by accident.

Today’s travel and navigating the hospital corridors have left me exhausted. I don’t feel particularly brave but I do know this was a big deal. Maybe when I am not so exhausted I will be able to appreciate how very brave I was today.