Well 8 years since diagnosis with rrms and over the last three months my walking has become non existent , I’ve been declined for mobility so can’t get assistance , I am currently on sick leave for anxiety / depression but can’t ever see myself able to go back and I realise that , I have considerable debt and am currently stuck … Housebound . My partner works but is having to do more and more and her and my daughter 16 years old think I’ve just given up . The reality is the cognitive decline I’ve experienced along with mobility is now preventing any quality of life or career . Just don’t know what to do . In December I could walk at least 50 metres without stopping , now I’m down to a wobbly 10 . Frustrated and depressed .
Just wanted to add that I think all this is making my anxiety worse , I’m even dodgy when I drive even though I’ll lose my company car anyway soon
Hi Gaz, in exactly same place right now, Im having great difficulty in coping with it, to be honest. My hubby is copping it, I know its frustration, but I cant, like you do what I was doing a few months ago. Feel absolutely helpless. Im pretty sure our anxiety is making things a whole lot worse. Wish I could say it will improve, unfortunately I have no idea, sure it will, but when, thats the question. Im very lucky, I have a very good ms team, I am due to see them very soon, sure they can advise. The consolation is there are many on here that have/are going through this, so we are not alone, as for the debt (which is certainly not helping your depression), go to debt management companies, step change, christians against poverty, quite a few really good ones out there, been there, done that too. You’ll feel better if thats sorted. When did you get turned down for mobility? Youre circumstances have certainly change, maybe time to apply again. Dont give up, easier said than done, believe me, I know, get the debt sorted first, give yourself some control back, & reapply for mobility, surely the change in your condition will make a difference. I really hope you have a good ms team, you need to speak to them as well. Your local ms society will also help you with financial issues etc & help you in the right direction, trust me there is help out there. Really, really hope you can get sorted, sure your wife & daughter will be relieved too, let us know how you are doing & take care Tracey x
Hi Gaz flinn
I know exactly how you are feeling. I was doing ok this time last year with just a few problems. Since October i have got a lot worse and i can hardly walk anywhere now.I have recently got a wheelchair which is handy as it allows me to go out with my family but i then feel i am a burden to them. I feel useless at the moment i know i shouldn’t but that’s me.My wife and son’s have been amazing with me and it doesn’t matter how much i moan they are totally supportive.
I am starting to worry about the financial side of things as my sick pay will run out soon and i don’t know how long my employer will keep my job open for me. Someone mentioned to me the other day that i might be able to get ill health pension if work finish me due to ill health. This might apply to you as well. Not sure how to find out about the pension side of things as i don’t really want to ask my employer yet.
I have found physio a big help, have you had any physio ?
If not you should ask your ms nurse to refer you to a neuro physio. It was my physio who arranged the wheelchair for me.
I know it’s hard to be positive at the moment but we have to keep fighting.
Hope thinks improve for you.
Hi Gaz, I am saddened at how bad thinthegs are for you right now.
Money problems as well as severe health ones make us not know which way to turn…difficulties at every angle!
Tracey has offered some really good advice and I hope you are able to follow it up.
I lost all mobility about 12 years ago and am now totally dependent on my wheelie and others for lots of things.
I know many people here feel that choosing to go for a wheelchair is a bad move. But honestly, there are just as many folk who have made that difficult decision and been able to get about so much more safely. They often say they wished they had done it long ago.
Money is always tight for us, but we live on an arranged bank overdraft and use it as best we can.
To get help with going out and holidays (to keep me sane) I have Direct Payments. This enables me to have carers, who really have made a huge difference, for the better, to both mine and hubby`s lives.
It is very hard when a couple have their life interrupted by chronic illness. it is often difficult for the one in better health, to understand how low the other one is feeling. Arguments and misunderstandings happen a lot and sometimes saying less is better than saying too much.
Regards your job…dont offer your resignation…let them finish you…for a better financial deal, I hope for you.
Eee love, I know it might be hard to see any glimmer of hope right now. But try to hang in there, yeh? Keep talking to us and we`ll do our best to support you.
I agree with Irons that you should (if you have not done this already) make sure that you understand what the arrangements are in your workplace for people whose health breaks down permanently so they can no longer do their jobs properly. If ill-health retirement is a possibility, that might be a good option. Even if not right now - I don’t know what sort of MS you have, or how likely it is that your health will recover enough for you to get back to work - might be good to know in the back of your mind that the IHR safety net is there if you need it in the future. An ill health pension will typically be a lot less than a proper salary, obviously, but at least it’s secure and keeps gets paid however poorly you are. It is a very distressing step for a person in the prime of life (age-wise, at least) to take, but sometimes it is the best option available.
I can just get to the toilet or down the stairs , my wife shouts at me for not trying or doing anything or trying to go to work , as an engineer !?! , she goes off to work in a state of rage and im left here alone rotting on the settee , i cant stand it , my memory is shot , ive got no motivation and she just says ive had m.s 8 years and ive done it all to myself !? My neuro said at my last meeting i seemed to be doing ok but since then ive got so bad I dont even know who to turn to or speak to , i cant drive , i dont have any help and we will lose our home , i am getting that suicidal feeling again . It doesnt help tingling all over , having dodgy vision ,and not being able to walk but my mind is killing me . Who do we talk to ?? Hospital ? Ms team if we can ? Doctor ? My health is nose diving at an alarming rate !
Did you ask for a reconsideration or appeal when you claim for mobility was declined? Lots of claims are rejected and then allowed on appeal, get all your info together and ring Citizens Advice they are a massive help.
I did ask for a reconsideration in writing but they said they had spoken to the mental health team who didnt believe there was sufficient evidence to support it . They didnt speak to my neuro but he said i seemed ok on my last visit before my decline . Ive seen nobody since my health deteriorated and being honest my anxiety and mental health is making me struggle whether that is m.s related i dont know . I cant think straight and my memory is shocking . So scared . I ask my family for help but my wife basically rows with me for asking them as she doesnt want them involved but she doesnt know what to do .
i understand how you are feeling, although i’m not quite as bad yet.
definitely ask for a reconsideration on mobility allowance but get help with the forms (CAB or benefits and work website).
if you have an occupational pension you may be able to get ill health retirement.
your pension provider can send you a illustration of your entitlement if you ask.
the procedure with my employer was 6 months sick on full pay, six months sick on half pay then meet with occupational health to discuss any possibility of you returning to your full duties. they may offer the option for ill health retirement or you may have to bring it up yourself.
I wish i was well enough mentally to deal with it all but i havent got a clue at the moment , im so puddled mentally , i feel physically sick with it all . Feel like ending it all , no quality of life and cant remember details of day before !
unload all your concerns to your ms nurse because his/her help is so valuable.
he/she can write a letter to accompany your mobility claim.
is your gp supportive? a letter from gp can cover the mental health issues.
your gp can also help get you an advocate for any meetings you need to attend.
hope you can see that there is a way forward now.
once things get moving you will feel a lot more positive
Ive been told to request a home visit from my gp by local mental health team so my mums coming over to help out , im in a bloody mess mentally , i think if i could walk to a degree i wouldnt be in such a mess , thankyou for your reply im just finding it all so overwhelming and confusing at the moment . As i said , mentally im damaged and the mental health team said months ago it was anxiety/depression or it could be your m.s “we dont know about m.s” but my neuro thinks im doing ok ?!? Aaaah
hi again gaz
that’'s great that your gp is coming out to you.
don’t forget to ask for an advocate for meetings such as the DWP for PIP/DLA.
it would be even more difficult for you than for the rest of us/me as your anxiety would overwhelm you and lead you away from what you wanted/needed to tell them.
next on your list is to ask your ms nurse to support your application for mobility help.
you CAN do it, you WILL get through this.
tomorrow will be a brighter day
As bleak as things seem now, it will not last forever.
Would counselling help? Your GP or MS nurse can refer you.
If you need to talk to somebody now, the MS Society Helpline is there 0808 800 8000
You will get through this.
Oh Gas, I’m so glad your gp is coming. Hope your mum gives you better support than your wife. Sounds very unfair your wife says you’ve done all this to yourself? MS is the culprit not you!
Tell your gp EVERYTHING,as its no good if he can’t get the full picture. Having suicidal thoughts MUST be addresses hun.
Doc came and said the last mri showed significant demyelination activity which will be responsible for the cognitive issues , pity my wife wasnt here to hear it , she doesnt even think im ill and just wants me to go back to work !
Mind feels sooo foggy and no energy , its awful , cant function
ask your doctor to write a summary of his visit and send a letter to you with it all on.
i always ask the various medics i see to copy me into the letters they send to my gp.
then at least you have material evidence that you aren’t making it up.
by the way, your wife sounds a tad harsh!
Hi Gaz, could your wife possibly be in denial? Happens sometimes,when people don’t want to see the reality. Ms can conjure up all sorts of fears, (as we all know) sounds like she may be frightened, like yourself. They tend to want it all to go away & they come over like they don’t care. If she’s usually nice, it may be she’s terrified of what might happen. People tend to like normality, throw in a serious illness & it makes them behave out of character? in a way I hope this is the case, you need an awful lot of support right now, maybe both of you do. My hubby didn’t like the thought at first, now he’s brilliant, affects everyone I’m sorry to say, massive thing to digest, really hope things get better, its not all doom & gloom, just needs adjusting to take care Tracey x