Ever since that hideous brown envelope plopped on to my doormat, life is, well, sludgy brown.
It’s remarkable just how much an ‘invitation’ (lol) from the Department of Work and Pensions, to move from DLA to PIP can suck the life out of you.
The days since Envelope Day are passing in a blur of those twin enemies, Fatigue and Fear.
Instead of moving forward in life, I feel I’m now stuck, analysing every symptom, everything I do and everything I cannot do.
It’s like having one of those harsh interrogation spotlights suddenly shining in my face, where I have to prove every single thing, without seeing beyond that light, to who’s sitting behind, making decisions which will affect my life for years to come.
I’ve lost interest in everything I normally love. I go to work (because I have to, otherwise I wouldn’t), I come home, I lie on the sofa and stare at the not-very-interesting splodge on the ceiling. I don’t cook any more. Laundry is building up. I can’t read, so I watch terrible tv. I sleep. A lot.
In work yesterday, I was hit by a wave of the most hideous fatigue, so overwhelming it was painful. I went to the van and fell asleep, my whole body wracked with nerve pain. My hands have stopped working properly and are tingling and numb every day. I can’t think properly. When The Boss dropped me off, I curled up on my sofa and slept for three hours straight.
I’m trying really, really hard to stay positive and to keep hold of a sense of who I am and the person I have become since being diagnosed with MS, but this experience is pushing me to my limits of endurance. Do you ever get that feeling you just want to lie down and say, ‘ok, ok, I give up, I tried, but I’m so tired of this, you win’?
I’m edging backwards to the terrible and soul-destroying Pity Party for One I held shortly after my diagnosis and I can’t seem to stop it. Going forward is not an option at the moment.
I’m clinging on to my old life by the skin of my teeth. I can live on very little money and still be happy. I’m inventive, a Womble, and quite happily make do with charity shop clothes and second-hand books.
When even that is under threat, what’s next?
Oh darling, bless you. I feel for you. It’s such a soul destroying experience. I’m having similar issues. Keep blogging, don’t go inwards on yourself, share how your feeling in the blog or on forums. This is how they bat you down so you’re too weak to fight back. You can’t let them win.
If you ever fancy a moan, a coffee or something stronger in Cardiff, just email me xx
Thank you so much! I will probably take you up on your lovely offer!
It’s just crap at the moment. Truly horrible.
I’ll definitely keep blogging, no matter how depressing the posts become – you guys are my lifeline 🙂
Aw that’s awful for you. I’m in same boat right now. Started with the scariest vertigo a couple of weeks ago which went away quite quickly but has left me feeling so off balance since. Really knocks confidence … as a really independent person I’m nervous going places alone incase I fall over. Trying to power through but it’s so hard! Contemplating going to gp for steroids one minute and talking myself out of it the next. Weirdest disconcerting sensation in head. HATE it. So make the pity party for 2. How does the ‘off balance funny head thing” affect you? Or anyone else who’s reading my ramble. xo
Ps please don’t give up ?
Pity party for two sounds much more fun!!
That weird and disturbing ‘off balance’ thingie is awful. I know exactly what you mean. When it happens to me, I just end up on the sofa, lol. Particularly hate it if it strikes when I’m at work 🙁
Not that I’m glad you have experienced it but something very re-assuring to know that I’m not the only one! Sofa it is then ? for now x
I know what you mean!! Take it easy 🙂
Annie, I am off-balance permanently and it is very scarey and upsetting to know that I will never be able to go anywhere by myself. Open spaces are a nightmare. As long as I have something to touch I can get about at home, but walking around my bed, which is obviously low, or the front of the settee, low also, is difficult.
Barbara, I don’t know if I have read this right, but from what I understand of your past life you have got over so many difficult hurdles I don’t have any doubts that you’ll get over this one with DWP.
News like this does knock you down, so just take your time to accept it for what it is, or be determined to fight them and then rise like the phoenix to your new life.
You can do it!
Thank you so much Joan!
I really hope I can get over this new hurdle, it just seems to be exhausting continually having to fight 🙁
It’s just all so unnecessary!!
Joan that sounds very difficult for you and I can totally relate to it feeling g scary. Mine is currently coming and going which is bad enough but to have it permanently must be on a different level. Thanks for sharing it with me. Keep well x
PS sorry for hijacking your blog Barbara about my balance issues lol ?X
No worries at all!! I love it when a discussion unfolds on the blog! 🙂 X
I have only recently started reading your blogs. You have described my life. Go to work get home and spend the rest of the evening lying on the sofa.
I have however told MS it is not going to win. Ok I have had to change my life but I will keep on going like you are.
Hello and good to have you on board!!
I’m so sorry ur having all these issues. I have MS as well and 1 1/2 years ago i joined a group called Wellness Champions…run by Pam Bartha in Kelowna B.C. …look it up on Facebook if u can. I changed my eating habits along with so many other lifestyle issues. It has helped me to some degree but I’m still working on it. So many people have changed their lives completely being on this plan & there r many people in England doing this. It’s just a suggestion to help u through this very trying time in ur life.
Thank you Susan. I think I’m just going through a rough patch at the moment. It’s so good to chat about it through my blog and I feel better already, just talking to you guys!!
….and strangely, you, mine B….May see son 1, next year, son 2… it’ll be their dads’ call: so that’ll be a Not ever again, then,
Sorry B, that’s employment lawyers..:well Mark Ridley, in particular for you….
Just like MSers, they alp might be unique!
( I had my / a 2 hour phone call re pip this am:!they paid !
Undergraduates ( yours and one of) mine will be graduates soon enough….I, and you I’m thinking, have done, well did our vital ‘bit’….,
Each of their lives willl be different, I hope… and we’ll both keep doing our best/ ‘bit’
Stay strong B….walking to boil kettle in a sec
Yup, we did our vital bit with your kids!! It’s up to them now, bless them 🙂
I have my official Pick Teenager Up From Uni for Christmas date …
I am so sorry to read about this….. don’t give up – you are such a gifted writer and give so much encouragement and hope to other MS sufferers with your blog. It is a hard time now for you but this will pass – the sun will shine again:-)
I’m so so sorry you’re here again. I can only imagine how devastating it would to get on with life in a semi-enjoyable way only to be hit by the freaking train again. I’m just so sorry. And I’m also a big believer in “writing it out.” My own writing has drifted to the dark lately but it helps me to get it out of my head where it can’t keep growing as fast or as efficiently. I hope you never stop writing about it. Good. Bad. Ugly. Our stories matter. Sending a virtual hug. It’s rather pathetic I realize when facing serious, scary life shit. Just know there are many rooting for you. Xo
Writing it out has definitely been my saviour!! I’m like you, it’s good to get everything out of my head and the support from everyone is incredible. If I keep it all in, it buzzes round my brain, dragging me even further down.
Virtual hug sent back, over the Atlantic!!
My heart goes out to you. Hang in there. I recently started reading your blog and iI have been so encouraged by your positive attitude but I sincerely get you. I was diagnosed 2 years ago. I live in France and I can tell you the paperwork is horrendous but you have to do it. I was recently registered as Handicapped. It didn’t change much for me but the word took a lot to accept. It felt as if I had been written off, despite me still working and trying to lead a normal life. My eldest daughter just got married and now lives in the UK. I feel as if part of me has been ripped off. I miss her horribly. Continue blogging and see if someone can help/be with you when filling out the paperwork. Don’t face this alone. Sending hugs xx
That’s really lovely to hear, thank you!
I’m definitely going to get help with the paperwork, when the full form arrives, plus you guys have given me such great advice 🙂
So sorry to hear about your experiences. It’s so hard to get used to the ‘disabled’ label they slap on us.
Suggestion for the dreaded Brown envelope. Try just answering a couple of questions a day in rough (notes on phone?) using all the guidance you can find online about how to answer. I know it’s depressing task, but might make it easier to manage in small bites. Maybe get a close friend to help transfer notes to the final form so you don’t have to go over again on your own.
That’s a really good idea and one I should really consider. I’m usually the type of person who wants to get stuff done all at once, so perhaps this is why I’m feeling so underwhelmed? Thank you! X
I wish I could offer advice but only have words of support – empty little ones albeit sincerely meant. But if you want a coffee get in touch. X
Thank you my dear. Would be great to catch up for coffee soon! X
Have just re-posted your blog on my FB page with the comment that I could have written it myself (ie, I identified with you completely) but didn’t as have been fully embroiled in my own invitation from the DWP to reapply for my ESA (kicked out of work in 2011 but that’s another tale!) and, like you, have been dissecting the minutiae of my MS life and its impact on the rest. I gave them 13K to wade through! And it’ll be all to do again when it’s my turn to migrate onto PIP.
Thank you so much for re-posting! And sorry to hear you’re going through the ESA nonsense.
Isn’t it all just so ridiculous??
Thank you, you have put into exactly how I feel.
In getting 0 points from DVLA to PIP, I’ve lost myself, they have won. Xx
That’s absolutely dreadful. Will you be appealing? X