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(!)
Just got back in from a family camping trip up at Loch Lomond. Stunning scenery and we were actually very lucky with the weather.
I did as little as possible! Had to leave them to set up the tents and the beds, cook the food and head back to the car if I needed something. It’s great that I can just sit back and watch them but at the same time it frustrates the hell out of me!
My contribution was leaning against the wooden frame of the swings, putting as little weight as I could through my legs, and pushing my youngest niece with 2 pushes and then a 5 minute break till the next push! I know both of my nieces realise I’m not gonna be able to do much when it comes to activities but no one ever makes me feel bad about the little I can do, and the girls appreciate the fact that I will do whatever I can, even themselves prompting me to take a break in the seat for a while. 2 very smart and very caring girls.
Getting into bed was interesting. We’d bought an airbed so that I wasn’t having to go right down to the ground. Still needed to get a little help getting in and out but we managed it.
And of course it wouldn’t be Scotland without our answer to mosquitos. Midges! I had the interesting case of trying to tell the difference between a midge bit, and pain caused by nerve damage. Now that I’m home and showered it turns out that what I thought was nerve damage was a bite, and what I thought was a bite was nerve damage. It was a fun game to play though!
So I’m on the couch and I’m not moving! Even if these high winds take my roof off, I’m staying on my couch! I had a great time spending it with my family! We spent most of our nights telling stories and laughing our heads off, so the other campers are probably glad to see the back of us.
When you have MS you know you are going to pay a price for what you’ve been doing physically, but I will always be willing to pay that price if it means spending time with those closest to me!
Between Friday night and this afternoon, I have relied on family for 8 journeys! Now we can kinda accept these journeys over the weekend cos I’m not causing my family too much chaos but today, today is different.
They have had to ask for time off work to ferry me to the hospital and back, a journey the DWP seem to think I’m capable of taking on my own! 2 buses on a more than 1 and a half hour journey to leith, with walks between the bus stops and hospital (Baring in mind their own assessment says I can walk no more than “50 metres”) and then the same back again! Again my life takes on a rather ironic punishment as I go to…..THE CHRONIC PAIN CLINIC!
Am I wrong?! Am I living in lala land?! Does it seem unreasonable to receive help from the Welfare State rather than diminish the work force of a small family business??!
This past week has done more to make me feel needy and incapable than the last 12 years living with this progressive debilitating disease! Don’t think I’ve ever felt as useless as I do right now!
Thought I’d have some fun cos I am bored, please do not take this seriously!
Strong message from the DWP.
Nominee for the conservative leadership, Stephen Crabb, has today revealed detailed plans to reform the DWP. The first question on any forms sent out to claimants will now be “Are you alive?” Any answer given will automatically make your claim invalid!
“I feel”, says Crabb, “as I attempt to get a new job even though I’ve made a mess of my current one, that my detailed 1 point plan to get more people into work will revolutionise the country.”
“I’m sick of hearing the excuses people give to legitimise why they are not working! It’s always, Ohhhh my limbs fell off and Ohhhh my heads upside down! At the end of the day even a chicken carries on walking about with its head cut off! My advice to people is look to the chicken for inspiration! I know you can work so what you know differently is irrelevant!”
The DWP are currently cancelling benefits and are collecting up to 400 mobility cars a week.
Crabb went on to say, “Man invented the Wheel thousands of years ago! Are you honestly trying to tell me that claimants can’t build their own wheelbarrows to nip down to the shops?! Lazy.”
Asked if disability charities of every illness that affects sufferers mobility have attempted to reason with Crabb he replied, “I can’t speak French, Spanish or Disabled”.
I kinda avoided posting over the weekend because I don’t think anyone wants to read me going off on a rant at the political fallout since Fridays (insane) result! But as the pound dropped and things were left up in the air due to the uncertainty over Britains future, I started to wonder how this may affect the welfare state. Since nothing is going to happen till September unless they change their mind, I feel the stock market and the pound are going to struggle to bounce back until article 50 is invoked. (Damn i started to rant, moving on). Anyway I’ll be keeping an eye on that to see if there are further cuts to the much needed assistance people with disabilities should get.
I’ve been approached by a disability lifestyle magazine to discuss how PIP is affecting me. I’ll be doing an over the phone interview tomorrow and it should be out next month (I’ll let you know when I find out a date). I’m just happy that people actually want to hear from me, most of the time I just ramble on till people stop listening.
I got something in the post yesterday which i hid in a drawer and won’t look at again for the next 5 months. Noble as motabilitys intentions may be, their cheque for £2000 to use towards a new car just smacks of defeat, like if I banked it I’m saying, “Oh well I give up you win cheers”. I do think it is important to say though, the guys at motability really were trying to help. Its not their decision to take peoples cars back. So the fact they let me hold onto mine for a couple extra weeks was gratefully appreciated.
Need to call my neurologist this week to see if they have received a letter from the Welfare Rights Team asking for evidence for my appeal. Want to try and get as much of it as fast as I can (Is it just me or does that not read right?!)
The next few days are gonna be slow going I think. Hate sitting twiddling my thumbs but really feels like I can’t do much else. Now this is the last I will say on it, today anyway, I promise. I’m aware that despite fighting this it could all be for nowt! Either Scotland goes independent and sets up its own version of DLA or PIP, preferably DLA, or the welfare powers move to Holyrood over the next 18-24 months!! So no matter what is decided during my appeals process I will need to go through this all over again within the next 2 years. If you think I’m annoyed now just wait until then!!
I’d feel sorry for you reading me have a wee whinge but you should think of my girlfriend, she has to actually listen to this 24/7 🙂
Now you don’t!!
I was in no fit state to take the car in yesterday so we did it today. Handed the keys over, the guy checked the condition of the car and that was it. I’ve totally been thrown off balance at my keys being lighter and the empty space on the road outside my window! He asked me if I was fighting it, which of course I am, so I said I’ll hopefully see him in a few months!
Went down to the Welfare Rights team yesterday afternoon and had a good chat with the guy, explaining clearly why I believe DWP are wrong. To be honest I told him that all PIP is wrong. This is a system that takes very little into account. You’ll have seen me making fun of the fact the bus stop is more than 100m away, but that doesn’t come into their thinking when they make their initial decision. Also you have to be able to safely, and at a reasonable walking pace, repeat covering more than 20m. I was never asked if I could or would do this. Not on my application form and not at my assessment. I had a one hour gap between walking to the assessors office and walking from her office.
So anyway the Welfare rights team have written to my Dr to get her assessment of me so appeal process is up and running. He asked if I would want to attend my hearing, I replied “Hell yeah”. The only sad thing is that it is in front of independent tribunal who are separate from the DWP so there’s no point in letting rip on them, this is also probably a good thing. The fact that only now medical evidence is used to base their decision on proves my point…….. IT AIN’T NOTHING BUT A CULL!!
So it’s PIP discrimination eve (or something like that)! Heading to a meeting with the welfare rights team tomorrow and then drive the car back to the dealership.
To show the ridiculousness of the situation I’m in I have to claim housing and council tax benefit as well as employment and support allowance! This will mean I get more benefits than I did when I had the car!! My GP has signed me off for 3 months (the maximum she can) and has specifically said I would be able to work IF I had the return of my motability car!! She laughed about the absurddness of the situation, the ESA woman at the DWP laughed when I said they had concluded I can walk no further than 50m and the bus stop is further than double that!
I’m going downhill without a doubt, whether it’s just my mind giving up the war for my body I don’t know. I have had to force my body to allow me to do things. Take my nieces to the park, pick them up, get to work etc. Now it’s like “what’s the point in trying?” Without this freedom I currently have I’m worried that going out less will just cause the limited muscles I have to seize up!
I’m ready for war, and this is a war! This is a battle for my personal independence and I will fight for it for as long as mind and my body allows!