I saw my lovely neurologist last Friday for my yearly review and to check how I was after my last Alemtuzumab treatment.
I was feeling fairly well that day, having taken the previous day off work as I had an early appointment. Just as you do, when you have MS? We learn to build in ways to … manage.
So, we chatted about the appalling time I had had from February until May, and the still-lingering symptoms. We discussed my fatigue, and sadly, the medicine that could have helped enormously has been taken off the market; so I’ll have to keep on dealing with that as best I can.
I got home (in a taxi as I can’t cope with the stress of parking at the hospital), and went back to bed. At 10am. It’s what we do? I cope best by being prepared, factoring in sleep time, down time, can’t do anything time. It feels so normal now, I hardly give it a second thought.
The next day, the DWP letter ‘inviting’ me to apply for PIP arrived on my doorstep, and everything changed.
When you know you will have to go into excruciating – and at times highly intimate – detail about every single aspect of your illness (and your life), reality smacks you right in the face.
I gloss over many of my symptoms, maybe laugh them off. They’re part of me now and I cope as best I can, and a lot of the time not very well. But I’m still here. Writing everything down is a depressing exercise in negative thinking and now I can’t help but play a running commentary in my mind.
Take yesterday: I called in sick to work. I simply could not cope with the stress of these forms. I was in a pretty bad way and shut out all contact bar this blog (and of course The Teenager, natch). I shut down and shuffled from my bed to the sofa and back again.
This morning, the commentary kicked in as soon as I woke up. Balance, dodgy hands, balance again, dropped stuff. Tripped over the cat, the rug. Attempted and abandoned a shopping list. This is my life now. But to have to catalogue and write down every single thing is horrendous. It’s now glaringly obvious to me just how much life has changed in the last six years.
My life is very, very small now. As a former proud globetrotter, for my horizons to have shrunk to my house and the passenger seat in the Boss’s van is depressing at the best of times. My life is extremely limited but I try to appreciate the beauty in simple things.
Not now. My living room window, through which I view life going on outside of my own experiences is now a window in a jail cell. My house, my safe haven, is now unsafe and at risk.
I thought I was doing the right thing, maintaining a positive attitude after two years of deep depression, still working (albeit with someone who accepts it’s completely normal for me to nod off mid-conversation). This all feels blown to pieces. Do they want me to give up? Call in Social Services? Admit I can’t cope?
Because, it’s beginning to look a lot like that.
I know it can send you in a spiral but remember these “people” are making you justify your disability! If that doesn’t make people angry I’ve no idea what will! Use that anger to power through it. They’ll pull you through the ringer but they honestly don’t have a leg to stand on. Sadly though we have to go through the motions and take them all the way to the finish line as they cannot be allowed to get away with it. I know from your posts you’re a fighter, I’m just sorry you’re gonna need to fight your way through this too but you can. Cos that’s what we need, more stress ?
This is such an amazing and heartening comment, thank you!
I really thought my fighting days were over – divorce, diagnosis, access to treatment and not forgetting my work dismissal case, lol.
We really do have to go through the motions, to prove MS is real. And this is unreal. Completely and utterly diabolical. I just can’t get my head around it.
x
I got my forms Xmas 2015, lovely way to spend the festive period. Just had to apply for UC now as well and the guy asked if I was terminal ? MS sufferers are fighters by nature, we have to be. I know I have to fight from getting up to getting back to bed and I am by no means an example of the worst case. No matter how much you run it round your head it’ll never make any sense. It’s all just nuts and depressingly it’s just the country we live in now where people like us are judged and vilified. This is why I don’t like people. Expect the worst from them all: You’ll either be right or pleasantly surprised, either way you win ?
I have to win. There really is no alternative as I have run out of options.
It was hard to adjust to a much-reduced budget when The Teenager went to Uni, and fair play, I expected that. I still support him, I pay his mobile phone bill and send over money when I can. To lose DLA and the resulting WTC and housing benefit is beyond. I will literally be in minus living expenses, and I don’t even want to think about it.
x
Keep that “must win” mentality! Really hope it does all work out for you to give you the aid you need. I’m always banging on about how bad PIP is but there are sometimes exceptions to that rule. Hopefully you’ll be one of them and it goes smoother for you. Definitely take someone to the assessment with you though!
I really, really hope so!!
I have to win, and that’s all there is to it.
I’ve even looked in to the alternatives and it’s a B and B hostel.
x
I’ve been delaying PPI as so tired to deal with it. Irony! Hope you’re ok. As OK as you can be.
I’m yet to call the number to activate the forms – too scared 🙁 But I have to do it soon.
Hope you’re ok too. Should we really be going through this??
x
It all sounds very familiar – we have already been through all these milestones… Did you apply for the PIP yourself or did you just get sent the forms without being informed beforehand? In the second case, it is of course much worse because you could not prepare yourself in advance. When completing the forms, just try and look at it in a more abstract way – i.e. fill everything out but try not to think too deeply about each question. After all, it is about your present situation with MS and things could always improve again! Regarding feeling trapped in the flat, my husband knows exactly how it feels! I really miss going out to places with him and sometimes feel really sad going out alone or meeting up with friends and he cannot come along because he does not feel up to it. However, when we do go out together, then we really cherish those moments together!
Take care and keep your spirit up!
Thank you!
I’ve been expecting this ‘transition’ for years, always dreading the brown envelopes, lol.
And finally it happened.
To have to go through the forms again, after DLA, is really hard. It just brings up so many things I can’t do and reminds me of all the relapses.
Not great. I’m an optimistic person, but this is brutal!
x
Hi, I could have written this. It reflects my life completely.
I’ve been there, I’m still there. I’m currently going through an ill health retirement process in work because my bosses aren’t as understanding as your boss and it’s either this or the sack. They don’t get how I can be ok for 3 days and totally not ok for the next 5.
I doubt I’ll qualify for the ill health retirement as like you I see the neuro (probably the same neuro at the Heath) and it’s always very positive and then I go downhill but if work check with the neurologist, I’m sure he’ll just say how well I am.
It’s a f**ker. MS that is..and filling out medical forms and talking about it just makes you focus on the negatives. All I can say is Stop it! That’s what I tell myself and can only say the same to you. Don’t let it drag you down.
Life is so short to coin a cliche and I want to spend the rest of my time laughing. I don’t want to look back and wish I’d just been a bit happier.
I know these are just words but we’re good. We can walk and talk and laugh. It may wear us out but we can still do it!
Lots of love x
Hi there!
Yup, we probably share the same neuro, lol. And isn’t it maddening that we ‘appear’ ok??
My Boss is my best friend and years ago I helped him set up his company. It’s just a bit of karma for me (unusually!). I’m great at project managing, sitting in my seat, with a coffee. Anything else, probably not.
I try to stay positive and keep a ‘wonder’ about the world, but this just got a lot harder since these letters. Where is the wonder in the world when it conspires to rob you of necessary means to lead a proper life? The mind boggles.
XX
I’ve already been turned down for Pip once. I didn’t have the strength to appeal. I think I’ll probably be on esa by Christmas and will apply for PIP again but it’s all so daunting.
I get incredibly angry with this government and how difficult they have made it to just live on the breadline.
You may already be aware of it but this is a really helpful site with a monthly newsletter https://www.benefitsandwork.co.uk/
Good luck and give it some welly x
Really sorry to hear this Suzanne. It’s all so incredibly daunting and utterly, utterly unfair.
Thank you for the link!! Really interesting. x
Hi Suzanne
I felt your confusion about finishing work and pensions etc. Speak to Tim at NSCymru he will advise you what you can do or expect from work. Really good for pip too. X
Thanks for the advice Ann 🙂
x
Thanks Anne
That’s really kind of you. I’ll do that x
🙂 x
…, sadly, B,I think we both know that, if there’s even a slight chance that you can, then you will!
With you hon!
Take it easy….I will!
?
Thank you sweets!!
Fingers crossed 🙂
x
I think each of us with MS are on a wobbly ship. We keep cheerfully bailing out the water that will ultimaely sink us, though the bail bucket gets smaller and smaller (and more and more expensive.) We sing, or blog, to keep our spirits up. And the folks on shore say, “Why how nice it must be to sail on a day like today, while the rest of us toil on land, too busy to sing.”
I love this! A brilliant analogy and so true. X
Hi hon. I had a friend at the gym who helped me fill in my form. And the nurse who assessed me had experience of people with MS so she seemed to understand. Let’s see what happens when I get the results! But yes, having to think about my symptoms and analyse made me very depressed.
Meanwhile, I feel exactly like you about my shrinking world. I was a travelling, running, independent career woman. Now not so much, though I’m very lucky to have a lovely, supportive partner.
I wish I could hug and help all of us, give us all a bit of strength because it’s a shit disease that’s hard to understand unless you have it. But I’m thinking of you and you are a fantastic symbol of strength with all you’ve done.
We’re still here. xxx
Thank you so much 🙂
It would be great to think I’ll have someone who knows a little about MS. Would make the whole thing so much easier!!
X
I wish you luck with your claim. What I can’t understand is why some people are still on DLA while others are having to go on to PIPs.
Joan
Thank you! It takes a while for everyone to transition over to PIP, from DLA. New claimants go straight on to PIP. x
Hi Stumbling you will get through it. You are strong. As I would say to everyone else in Wales speak to Tim, Adele etc at MS Cymru about PIP and work problems. They are really helpful. Speak soon. Xx
Thank you! I will definitely make contact with Tim 🙂
x
Reading this post I can relate to your experience, though the problem is – I didn’t realise it. I think maybe I just didn’t want to cause more stress. This year I went through the PIP process which made me feel like I was a liar, making up my disability.
I struggled to get to and from work on public transport, but I did at least get an Access to Work grant. That caused more stress than it should’ve done with having to pay £1700 each month and claiming it back. Work were really helpful allowing me to take disability leave until I could sort out an account with a taxi firm (you’d think they’d welcome £35,000).
This year I have made an effort to ask for help but constantly told “we can’t help”, or they make it really difficult.
The one thing that has driven me this year is one of your earlier blogs that inspired me to go for promotion. Guess what? I got that promotion a couple of weeks ago.
Your world might seem small to you, but you inspire a lot of people and you make us smile. x (sorry for the long post)
Really sorry to hear about your Access to Work problems, but wow, thank you so much for the compliment!!
I am over the moon for you about your promotion!!!!
Your comment really does mean the world to me, thank you.
X