Forum

New to SPMS - and life falling apart...

Hi all,

Forgive me if I get anything wrong, this being my first ever post, and one of the few times I’ve started to swallow my pride and ask for help and advice!

I’ve just this week been diagnosed with SPMS by my consultant, and am at a considerable low. Work have reduced my pay to less than half my salary so I can’t pay the bills or heat the house, and my relationship is now starting to suffer as well.

I suffer from a whole panoply of symptoms, difficulty walking (I use canes and a wheelchair), speech and memory problems, lack of co-ordination, muscle spasms, trigeminal neuralgia, and numbness and pain in my limbs to name but a few (plus semi-controlled epilepsy) Yeah, I get help from my local MS nurse and physio, plus under the care of 2 neuro consultants as well.

What I guess I’m trying to say, in a roundabout and verbose fashion, is what other help can I get (in particular financial). I don’t want to be in a position where I can’t pay the bills and the rent, work fire me, and I can’t support myself. Applied for PIP 3 months ago, but have only been told I have to wait for an appointment, and my symptoms are progressing fairly speedily. What can I do? How can I stop my life crumbling around me? How can I even start to secure a future for me and my other half?

Any advice would be appreciated, and thanks in advance!

Tim

Hi Tim

Blimey, you’re really going through the wringer at the moment! There’s a ton of stuff you’ve got to deal with, so getting enough emotional support is important. Getting referred for counselling might help. And I assume you’re getting drugs for some of your symptoms, and it’s possible you could qualify for free prescriptions - speak to your GP surgery to find out more. And if you don’t qualify, then you can get pre-payment certificates, which can work out cheaper in the long run.

I know how worrying money stuff can be, especially with the future looking so uncertain. Get in touch with Access to Work, which is a DWP thing to help people with disabilities to stay in work. This could be things like funding any special equipment that could help, or pay for transport costs to & from work (I use it to pay for a taxi each day).

If you work over 16 hours a week then you’ll qualify for the disabled component of working tax credits. And get in touch with your utilities companies, as they often have schemes for people with disabilities like cheaper rates or capping the total bill.

The problem with those things, though, is how hard it will be to qualify before you get awarded PIP. But speak to the tax credits people and utilities companies anyway, to see what they say. And give the MS Society a call, or see your local Citizens Advice Bureau, as they’ll be better informed than me.

I really hope you get the help you need, on every level.

Dan

1 Like

I agree with everything Dan has said, I can only add that it might help you to make an appointment with your local Citizens advice they will be able to advise you regarding benefits. Also why have work reduced your salary? have you got a union if not it’s something else to ask Citizens Advice about, there are laws to protect disabled people who work.

Best wishes

Jan x

1 Like

Welcome Tim.

I can only echo Dan’s excellent advice and I wish you all the luck in getting things sorted.

xx

Hi Tim

I was diagnosed with SPMS too. It takes a lot of coming to terms with. Dan has given you excellent advice, the MS Society helpline 0808 800 8000 is also worth ringing.

You are really going through it at the moment. All I can say is hang on in there, it will get better. There is life after a diagnosis of SPMS.

Take care

Anne

Hi Tim

Welcome to this brilliant site.

I too can only echo what Dan has said.

We all understand what you are going through. We are all here for you any time you want to offload or fancy a chat. You are not alone.

Hope you can get financial help soon as this will help you as stress is a terrible thing for MS symptoms.

Take care and keep in touch.

Shazzie xx

Hi Tim, sorry to read what’s going on with you. I’m in exactly the same position. The advice everyone has given above is right, get in touch with your CAB as soon as and they will help (don’t know what I would have done without their help). This site is also invaluable for help and support so feel free to visit and rant, cry, laugh, moan and generally unload everything. We have all been (or are getting) in your position. I count myself lucky that I have a great medical, physio and alternative/holistic team behind me. The personal side of things is difficult (look at my post a couple of days ago “Is this it”) as you will see Poll gave some great insight and advice.

I lay awake last night thinking about the whole thing, let’s face it we can’t really do anything else, and I decided that I would write all my thoughts and feelings down in a letter to my OH and ask him to read it when I had gone to bed (which is where I feel is the only place I can cope)! This could turn out to be a novel lol. This will also allow him to digest everything without it dissolving into all out warfare. We have been together a lot of years but like Poll pointed out the relationship will now evolve into something different. Believe me I’ve been through the whole gamut of emotions regarding this and have frequently given him the option to “cut his losses and leave”. I hope you will be able to think this through and deal with it slowly, welcome to the SP MS world, nothing happens quickly.

You will have up and down times, so take everything slowly and methodically and visit here to let us know how things are going. I could go on and on but my thoughts are with you but you are definitely not alone. Linda x

Hi all,

Thanks all so much folks, it’s so good to know I’m not alone at the moment! I’ve now contacted my NHS Occupational Therapy to help me with some small modifications around my home, meaning I won’t have to pay for them, and am off today to apply for my Blue Badge (even if I don’t drive, you never know when you’ll need it!).

I’ll be making an appointment with the CAB as Dan suggested, and see what advice they can give me as well. With work, I used up my 6 months company sick pay, and am now going onto SSP which is (as I’m sure you all know, a pittance). Fortunately I was sensible enough to subscribe to my companys Income Protection scheme a decade ago, but selected the lowest possible level, hence the halving of my salary. I know I should be grateful for this but it barely covers the rent - I have actual nightmares about me and my partner losing our home. We shall see what assistance I can get.

As for PIP, I applied back in August, but have heard nowt, can anyone receiving it tell me if all the nightmares I’ve heard about timescales and interviews true? I’m utterly dreading it, but feel I should chase them up for an interview…

Thanks again peeps!

Tim

Tim

Listening to other posts on here does help. One of the emotions I overcame was accepting I am disabled with MS and then thought to hell with it, my dignity disappeared and I claimed every benefit I could get my hands on. Pursue everything you can. If you don’t ask you won’t get. There is no shame in getting your entitlements when you cannot work due to MS

Best wishes

Patrick

Hello Tim and welcome to our happy forum. So sorry to here what you are going through but, it will ease up. I can’t add anymore as the others have already given you good advice. I wish you luck and a speedy answer to your problem.

Janet

x