Ok maybe a little extreme but it’s not far wrong. Dealing with this cold that’s totally knocked me out and now thinking I’ve picked up a virus to go along with it!
I don’t know if other MS sufferers deal with their body being affected by some other illness like I do, but I don’t bother the Drs with it. I’m used to my body falling apart for a few days till I shift what ever bug I’ve picked up cos they’re just gonna tell me to rest and things’ll go back to normal when it goes. But if this doesn’t sort itself out by Monday morning someone’s getting a call! This is where taking tablets daily to lower your immune system really doesn’t feel worth it!
I’m running off about 8 hours sleep over the past week as I’m waking up every hour of the night since the weekend. Now if I could do that sitting and being wide awake I could get loads done. Dunno what but whatever it was it’d be loads of it!
Getting wound up cos I was getting lots of hours in at work but that’s kind of disintegrated now. Late in every day I can actually get in and spending most of the working day at home 😡
It should just be an unwritten rule, life long incurable condition means you can’t get anything else. Science is really letting the side down here!
Tomorrow is a new day though and maybe I’ll get in for some time, but until then I will piss and moan and then play Fifa or something. Time well spent(!)
Well I wasn’t shocked yesterday kinda saw this one coming. There was a new scar showing up that wasn’t there 12 months ago in the MRI scan of my brain (I do actually have one despite the rumours). I can’t prove when or why, but I’m more than comfortable blaming the stress of the DWP and PIP for this!
My doctor could tell I’d had a high stress year and she was hopeful that things could start getting back to normal now. I’ve made a big mess up there over the last 4 years, 3 attacks.
The good thing is it’s not affected me physically it just means I don’t really remember my name. But I guess that’s like not remembering my phone number, I never call me!
With an illness like MS, where stress can exacerbate it, you need to be prepared for the possibility that battling PIP comes with its problems. Still glad I did it though. Those people needed taking down a peg or ten! It’s all about looking to the future now. If you go into it knowing there might be a price to pay for the battle, at least you can prepare a little for it.
Given me a few things to think about though. Need to look at medication options as I may have to calm this thing down and get it under control. 3 attacks in 4 years certainly has me concerned and the neurologist has basically left it up to me to decide what to do next medication wise. I hate when they do that though cos if it doesn’t work out I can’t blame anyone but myself!!
As a side note my cheque finally cleared this morning so I can organise sorting motability out with the hilarious balance I owe them and can officially order the car. Guess what??! Motability is closed at the weekend so I can’t move things forwards till Monday 😂 I’m sure this process is character building or something
Been a while since I was last on here but this feels as good a time as any to come back.
It’s amazing how you can go from plodding along life nicely to all of a sudden waking up one morning to find everything has changed overnight! I’ve been sitting on a merry go around for the last 5 weeks. It’s no exaggeration to say I feel like I can feel the earth spinning on its axis and and I dare not close my eyes as this just speeds the motion up which makes trying to sleep interesting. Weaknes in my limbs and slurring my words inreasingly are enough to send alarm bells ringing anyway but it’s the duration this has constantly been hitting me for that makes me think this must be an attack. Been for a head scan and off for a head and spine scan next week to see if there are any new scars flashing up. I guess I just need to sit patiently for results to come back.
In the mean time I am left to question if changing from injections to a tablet to help prevent attack, with the tablets apparently being more effective at doing so, was a good idea. Definitely happy not needing to stick a needle in my leg anymore but would this have happened if I had not changed to Gilenya? I will never know. The next level to go to is an infusion every 4 weeks to create a barrier between the brain and blood. Now the first side effect I was told about was death! So I did kinda rule that one out to take the Gilenya but if that hasn’t even got me past a year then maybe I need to reconsider this! But I’m going with my own feeling right now, this may not be an attack it might be something else but I will be surprised if I’m wrong.
After two years of trying I had an appointment with the chronic pain clinic to deal with the nerve damage pain as my tablets have not worked for 3 years. Opening line was the pain will not go away. I already knew this but it’s a bit different when a Dr says it. Looking at the pain management options I was very surprised that morphine and methadone are available to me if I want them. I can’t rule anything out now so we shall see where we end up!
I am essentially housebound, struggling to do any work as I cannot focus on what I’m looking at. I have watched so much crap on TV and had many intellectual conversations with the cats and dog!
Hopefully get some answers this week but it’s more likely to come through next week. On we go, head held high…..ish