Forum

Not a clue what to do

I have been diagnosed with MS and after months of waiting finally started ocervus treatment. This disease is now taken over my life and I am at my whits end because there is zero support or someone to sit down with you and to discuss the practical aspects which this illness destroys your life with. My gp is beyond useless and when I mention the words multiple scherosis is like speaking a foreign language and hasn’t got a clue on how to support my needs. Been thinking to switch gp but worried about my months and months of medical reports won’t transfer over and that it’s day one all over again. I am worrying about work as I know have taken time out of it due to ill health hospital appointments and being unable on days to even leave my front door due to fatigue…dropping off or falling asleep during the day… at times my walking or stumbling is playing up and tripping constantly whilst walking… There is a limit any workplace will put up with someone’s illness or condition and may find myself out of work. Then if jobless what do I do…I have read and heard horror stories claiming social security benefits. Universal credit attitude is to get everyone working regardless how ill you are…I know somewhere I will have no options but to claim it at some point or it’s equivalent Esa then reading the horrid assessments they do to force you to work makes me worry for the future. Then for PIP again another horror story to claim that because as you know one day after another with this illness is different and whatever the government states it’s how you are on the assessment date not that you was in bed 24 hours previously with this disgusting feeling in all your body pulsating and eating away at you. My mental health has suffered over the years and now can is finally pin pointed down to this. All sorts of thoughts run through it good and bad… As you can see the support been given has been nothing and only wish I could sit down with someone that understands and what I need to do to forward plan my life…sending booklets or leaflets out for guidance is zero help when you need someone on your side to fight back… does any such support exist? Really just need face to face support somehow for guidance and where to go for supported help with quality gp and hospital support. A get together letter received today from hospital to chat with others in similar boat about eight months away is certainly no help at all. Could anyone give advice or where to go for help?

3 Likes

Hi I have been diagnosed in last couple weeks and have had as many mental breakdowns! Anthony’s advice is good and what many people have said to me, it’s only going to wind you up thinking and worrying about so many things. You’re on a good drug and as hard as it is, just try to live in the moment. I’ve seen a few things on ms society Facebook about face to face meet ups and also online one, you may find something on there a bit sooner! X

Thanks for the reply. You can see I have had to struggle with all this alone and zero support from any channels. It makes me angry that you just get told you have this life changing condition and expected to just get on with it as nobody cares. I have always been a practical person planning for the future and maybe I need to start looking at things differently. All I get from my gp is getting called “love” and that is that. I would prefer the gp to at least give an interest and or follow some plan of action with me for moving on with my life… just to be given pills each time for me is not the solution…I suppose we all have different expectations. All I feel is I have been told got this condition and left to rot… pumped with drugs but nothing more. Not expecting some angel to appear from the sky to sort my issues out but someone who will guide and advise. Sorry to sound negative but all it seems to have been given zero advice zero support and zero guidance with such a life changing condition.

Which is what the MS Society is for. GPs are not counsellors; their job is to treat the body. And their job description, more or less, stops there.

The MS Society (there are other organisations) offers advice, support and guidance. But it won’t be handed to you on a plate, you have to ask. Please make use of it.

Anthony

2 Likes

Hi MsWhy, I know exactly how you feel; when I was first diagnosed, many years ago, now, I too felt cast adrift, as if there was no one else in the world I could turn to for support or advice, but as Anthony and Daria quite rightly state, you aren’t alone in your struggle. There are many sources of help, this forum being one of them; there are helpful UK based websites, too, such as Shift MS and the MS Trust, both of which carry tons of information which may be of some use to you. Do you have a good neurologist, and an MS Nurse? an MS Nurse is often very sympathetic and supportive and may be more than willing to lend you an ear with regard to your problems, even if a newly diagnosed group meeting is months away.Perhaps there are other groups in your area that you can join, related either to the MS Society, or to Shift MS. As to your work place, they cannot, as far as I am aware, simply fire you on the spot because you have been so ill. In fact, now that you have been diagnosed with a disabling illness, and you are willing to tell them that that is indeed the case ( not everyone is willing to ’ come out ’ so to speak regarding their disability to their employer right away) they are required, in law, to make what is known as ‘reasonable adjustments’ to your work setting to allow you to continue to work , such as, for example, a new and more comfortable office chair , desk or type of computer or a period of rest when you are fatigued; it depends on the type of work that you do.( sorry I’m a bit repetitive of what’s been said above, I have tremendous cog fog) Don’t be put off by the horror stories regarding PIP; they are out there, its true, and it is a sod of a benefit to claim but you are fully ENTITLED to claim it by virtue of your disability. There is a website called Benefits and Work (often linked in posts here by a lady with the monicker SSsue) which, for a small sum, provides members only guides as to how to go about filling in all the paperwork. If you feel that you cannot do this yourself, approach your local CAB, or even your local MS branch to see if they can help fill in the forms with you. Its always worth a try; if you don’t ask, you don’t get, so to speak. I do not know what the rules are regarding application for a Blue Badge where you live, but look up your local council and see how they go about their application process. This is a particularly valuable tool if you can drive but are fatigued and cannot walk far without tiring. As Anthony says, you have to ask for advice and guidance, its not handed out in a flat instant. Sometimes you have to really fight your corner to get what you want,(I’ve just been engaged in a monumental struggle for a custom built wheelchair from my local wheelchair services, but I stood - or rather sat- my ground and succeeded!) but if you persist, you will get what you need. Ultimately, everyone on this forum is with you, so drop in for a chat whenever you need to vent. You’ll always find a ‘listener’ here. Nia x

1 Like

I get you hun, I wrote this as I felt so deserted and alone. https://livingdailywithmultiplesclerosis.com/2019/04/25/deserted-and-alone/

OK why not ring up MS Society and talk to them about your work and benefits they are very helpful. Or you could ring your local Adult Social Services team who can support you with a social worker and they will advise and help you, i had one she was lovely.

ACAS help line can advise you too of your employers responsible to you and your disability.

At least you have been given DMD and hopefully they will work. Also yes everything is a wait, 8 months is normal the NHS is full to stretching too. Have you no family who can support you or friends?

I found if you need advice you have look for it yourself or join an MS group. Or ring the MS society they are brilliant I have to say.

I get tons of support from MS groups on Facebook too and the guys and gals on here and there always point you to the right place.

Yes perhaps you need to look at things differently, if you need help with MS you have to go seek it as sadly even the MS nurses are so swamped a lot of them end up leaving or going off sick.

I waited 3 years to finally see my neurologist. I feel for you I really do, but you need to take action for yourself. I would start first with work. xxxx

Great post Nia. xxxx

Thanx, Chick xx.

Access to Work is a great help. they liaise with both yourself and your employer. they can even provide taxis to get you to work and back. i hope this service still exists but look it up.

Hi mswhy,

I have been living with MS for 10 years and really get what you are feeling. I am new to this forum but can tell you the people on here are fantastic and so worth listening to. The advice given by Anthony A, Articvixen and Crazy Chick is spot on, I hope you can find the strength to seriously look at the practical side of their advice and act upon it. Also I hope it shows that you are not truly alone, there are people here who can relate to you directly from their own experiences and are willing to share that with you.

When I was first diagnosed with this dreadful condition ( after 2 years of trying to find out what is wrong with me !! ) my mind too went into that downward spiral of “what now”, “what if”, “why me”, " what about my family" and seeing nothing but dead ends. My MS nurses were fantastic and told me the realities of what I was facing. They gave advice with words and literature on where and how I might find help. One of the leaflets started with a statement " so you have been diagnosed with MS welcome to the rest of your life" now call that too blunt but it is the reality, but there is help, and as much as you now feel all alone, you are not.

Anthony A is right, to find that help, the first step is yours and I know that taking that first step can seem massive. I so hope you can make it, and reach out to the organisations and formats mentioned in the above posts and replies. Not all will suit you, but know that amongst them there will be welcoming arms and a way forward for you.

I sincerely hope you can find the strength and courage to do this, my thoughts are with you, good luck to you.

Steve