Bugger!

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

 

 

Sumatriptan positive news

Like clockwork my migraine arrived within the predicted timescale, which is every month between 18th – 22nd. It started around midnight but as I was half asleep and I didn’t twig, I just thought maybe it isn’t as the pain wasn’t intense it just felt like my sinuses had become a bit stuffy. However by 2am it was clear with every passing minute the pain was becoming more intense. I panicked a bit thinking I may have missed my window of opportunity with the sumatriptan.

I am so thankful that I put my migraine grab bag together, it sits on a shelf beside the bed with all my medications. Inside is a bottle of water, a pint sized plastic cup, soluble paracetamol, soluble aspirin, buccastem and sumatriptan. Having it all in one place means I don’t have to fumble around trying to find various medications. It is all in one place, plonk the soluble tablets in the cup, tip in the water and then take them and the sumatriptan. Then shove the buccastem between my gum and my top lip. Turn off the bedroom light and go back to sleep. 

Migraine grab bag

Previously I would take the medication I had, then spend the next couple of hours trying in vain not to vomit them all back up. By 4.30am my migraine had subsided to just a headache and I was up chatting to Jay, having a cup of sugary tea as my sugar cravings and crazy hunger kick in straight after a migraine subsides and vomiting is no longer on the cards. I did go back to bed at around 5.30am and slept a few more hours.

I really didn’t feel well all day, quite spaced out and didn’t quite suss out that with all the drama of having a migraine I had forgotten to take my morning medications. I was quite lucky in the withdrawal symptoms weren’t that bad I just felt unwell. 

The protocol I have been following with the supplements says that you won’t notice any change in your migraines ( severity or frequency ) until you have been taking them for a period of at least 3 months. So I was expecting to have a migraine this month. I had felt the warning side of a cranky bad mood ( to me it feels like bad PMT and feeling and getting angry with inanimate objects) the day before which seems to be the only warning sign that I get.  It always seems to be the day before that this strange mood hits where nothing is right and everything is conspiring against me. I have identified this now with the last two migraines now that I am tracking them with more detail. There is no food trigger as my diet is pretty similar each day to the next. With it always being within that date range I would say that it was more than likely hormone based. Despite the fact since coming off the pill in December 2019 there has been zero sign of any menses.

My migraine tracker

As usual my memory of Saturday is pretty hazy other than the fact I was ravenously hungry all day and extremely tired. I remember Sunday which is better than normal, as usually I lose a few days worth of detailed memory. Sunday I still didn’t feel 100% and managed to pass out whilst trying to get on the floor due to feeling like I was going to faint. Resulting in a bruised bum and a Labrador sitting on me refusing to allow me to get up again until he believed it was safe for me to do so. The signal that it is safe, is Dembe going and getting me a toy from his toy box and wanting to play. Until then he will prevent me from even sitting up but sitting on my arm or throwing himself across my chest. This isn’t something we have trained him to do but something he does instinctively and I am incredibly proud of our boy.

It is fantastic news that the sumatriptan  is working so well for me and it has taken away some of the fear that had been surrounding the next migraine attack after the one in May been just so bloody awful. I am noticing with the magnesium supplement that I am sleeping an awful lot better, which is great as for the first time in years I am not spending hours awake in the middle of the night. So it is positive news on multiple fronts for a change.