But I never left, I was always right here.
I’ve been kind of quiet recently just trying to get my head down and get on with, well, life! Despite knowing nearly 2 years ago the chaos PIP would cause, then living through my own battle with them and eventually winning, still nothing has changed with how they handle this horrendous system. Stories are still coming out every day about how disabled people are becoming housebound, having to give up work and struggling to get through day to day life.
And now there is a new evil on the block, Universal Credit. Everyone is aware of how badly this is administered but yet they continue to roll it out. And again, they have no idea what MS is! Asking me if it was terminal was not a nice thought to have in my head for the rest of the day but that’s what happens when a benefits system that you may need due to a medical condition is administered by someone with no medical background. So I’ve applied for it as my health has detioriated so badly since going through the PIP process that I’ve had to go part time at work.
Already we’ve been down to the job centre twice with info and we have to go back next week with more. All this work and no money till at least mid November. Dunno how they think people like me survive!
Don’t wanna come on here just to moan, although it is the best place to do it! Let’s see how this will play out!
I take quite a few pills to deal with the pain caused by nerve damage. Pretty sure I rattle as I walk down the road. They don’t actually work so just trying to power through it nowadays. Problem is I don’t really remember when I run out of them cos kinda feel I take them for no good reason. Just feels like taking pills for the sake of taking pills.
That’d be fine except they also act as antidepressants as well. As a result think my brain chemistry is totally messed up. No point taking them for pain anymore but every time I run out them it becomes clear I need to take them for the other thing!
I’ve gone through 4 days feeling like I’m a breath of air away from crying! It’s surreal, not watching anything sad, not thinking of anything sad, not even getting down about my life. There’s just no reason for it. Have I become dependent on them? I wouldn’t recommend suddenly stopping tablets you’re prescribed I just struggle to remember when they’re gonna run out!
I look for the funny in everything, even in things I probably shouldn’t. So why does my body need a pill to balance the chemicals out? I really should have super powers or at least be psychic by now.
It’s ok if I need pills for the rest of my life. Kinda used to that idea these days but if I could get by with as few as possible then that’d be great. Until they make one pill though I’ll put up with being a human rattle. Maybe record that on my next song instead of drums!
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(!)
I don’t think it’s possible to do less than I have this weekend and somehow I’ve done too much! And too much consists of washing 6 dishes and taking the rubbish out!
Between doing as much work as I can and getting choked full of the cold suppose I can’t expect the ms to stay out of it and not add to the problem.
So I’ve spent my time playing batman, mad max, watching the matrix and watching tons of 9/11 conspiracy videos! And people say I waste my days(!) If it’s not that conspiracy it’d be the Mandela effect instead! Or maybe it already was??!! 😱
I do need to use my time more productively. Need to sit down with a notepad and a guitar but the thought alone of that just knackers me! Maybe next weekend!
Exciting week with my latest chat to the press about how important the motability scheme is to people like me. Nice wee section on reporting Scotland and BBC Radio Scotland so good they are still interested and hopefully Holyrood was paying attention with the welfare powers moving north soon.
Had a good strong start to the year getting a good amount of time in the office, but this week things outwith my control pop up. I get a bloody cold
Can’t fully express what this does to my body! My legs go where they please, they give way under the weight of my body (thank god I’m not bigger!) and my arms don’t want to lift a pen never mind anything heavier. Whole body just feels so tired like I’ve spent a week hiking through the jungle or something.
So work has kinda been cut this week it takes so long to wake my body up enough to deal with the day. And this is where having my car back is just a blessing! I’d have no way of getting to work on my own in the middle of the day but having the car means my day isn’t just wasted. It also mean I can cope with getting less money and not worrying about someone coming to pick the car up. I went to work yesterday for 11 and today I got in for 1. I lose hours but it means I can do my bit, pay my rent and pay my taxes. All the things Society got billed for when my independence was taken away from me!
So my weekend will be spent barely moving to try and shift this damn cold. It’s the little things that’ll knock you down. Hopefully next week runs smoother and I can make up some of the missed hours.
Is anyone else thinking we’ve all been left in the wilderness?
I’ve seen two stories today about the chaos PIP continues to cause. This is probably a quieter PIP story day than usual. So why is it that everyone can see it’s a broken system apart from the people that we, presumably because we thought they were smart enough to make decisions, put in charge??! The lunatics are running the asylum! I know when I lost my car it felt like they’d cut my legs off. I wasn’t disabled enough for them so they made me feel more disabled?!
Something needs to change. Someone’s gotta be blamed!
But the same stories continue to be told and those who are supposed to have our best interests in mind seem to be MIA. I’d say at least we can vote them out but if we did who would we replace them with?? I fear this will remain the status quo until someone steps up and inspires change!
But don’t get downhearted! Change is an inevitability. People power can change the world, we just have to wait for enough people to get angry!
I tend not to post daily as I would probably annoy anyone that was to read it. My memory is struggling these days so it’s hard to remember what particularly annoyed me yesterday so I might start noting it down.
I’ve been called pessimistic most of my adult life. I disagree. The people who call me that are far too optimistic. I say I’m a realist. I know what I have, I know what it may do and I know what may happen to my daily life. Surely it’s better accepting what could happen and if it doesn’t be pleasantly surprised as opposed to ignoring what could come your way and being crushed if it does?
It gives me a different outlook on life and I think it makes me judge what happens in the world very differently to the “optimistic” people.
From the price of chocolate to the shortage of veg. From Trump to May. From Global warming to the movements of the planets through the solar system.
I’ve got a lot of problems with this year. Writing these thoughts here must be way to cheaper than paying a shrink!