Forum

Feel like I'm on my own and struggling

Hi guys I was diagnosed over a year ago and have no support. I have had a few relapses which I just have to get on with, if I call my doctor they advise they won’t touch me and to call my specialist, I call them they won’t prescribe anything with out seeing me but they are a two and a half hour drive away. Which isn’t possible when your leg doesn’t work, I have very little family support and I am a single mom of two. This has led to missing work im self employed. So no sick pay, I did try for pip but I am not bad enough to claim. The relationship with my kids is now rubbish I seem to spend all my time on there case for silly things ie tidying up after themselves. Only because I find it difficult to do sometimes where as before I would just do it. Someone please tell it gets better.

Hi Anna, I really can’t help but I just wanted to say please don’t think you are being ignored on the forum, someone will come along and have some sound advice for you. All I can say is chin up don’t stress to much with the kids as that will just make your condition worse,

pete x

Hi Anna

That’s a really tough situation! I’ll pray you find support. That’s crazy that your neuro is 2&a half hours drive away. I’d give your MS team a call, explain the situation and demand they do something about how to support you, because at the moment they’re failing you.

It’d be worth finding out where your nearest branch of the MS Society is, as you may be able to meet with other MSers who are relatively near. And I’d call your GP and ask if there are any disability support groups or other services in your area where you could meet others and get support.

Dan

hi anna

i’m not in a position to advise you but just want to say that i understand what you are saying.

have a word with the head teacher at your kid’s school.

explain how it is at home.

what the head should want to do is make a teaching point.

eg “caring for others”

giving positive reinforcement is another thing that school’s are keen to do.

as dan said give your ms team a call and say how let down you are feeling.

in my area there is an outreach service from the main hospital, find out it there is something similar where you are.

also seek help with the PIP application, you are struggling to cope.

i want to give you a big hug

x

hi hun you can contact your local ADULT SOCIAL SERVICES team, and ask them for help. You should be able to apply for direct payments. If your on limited budget you might even get it without paying for it.

they will come and assess your care needs. then if they think you qualify they will send in the financial assessment team. Its all quite easy to go through.

also ask about YOUNG CARERS. how old are your children? time you got tough with them. anything on the floor is in the black bin bag and chucked out and you do it. you obviously did everything for your kids and they still think you can do it. have a family meeting and talk to them openly about how you feel. where is the father?

It will get better but you have to sort this out sadly. ring adult social services. also you should have an MS nurse you can ring and get advice from. do you have a P3 in your area, they are great for help. https://www.p3charity.org/

talking helps too find your MS local society and ring them for advise and help.

what do you do as a job? Is there anyway people can come to you for example?

i do think you need to get your children on board and explain what is happening. start getting tough. xx

Hello Anna

Do you have an MS nurse? And does s/he come and visit you or do you have to attend a hospital or clinic?

The MS nurse could contact your GP to request drugs, eg steroids if you have a relapse.

Plus, are you on a disease modifying drug (DMD)? If not, maybe you need to sort out getting on one so you have fewer relapses.

Does the hospital arrange transport for appointments? Have you asked them? Maybe you should. It sounds like you need to get to see the neurologist, sort out DMDs, find out about any other drugs needed for symptom relief and have them contact your GP to arrange prescriptions. And if you can’t drive to the hospital, they should be able to make it possible for you to get there.

I understand Crazy Chicks suggestion about Social Services, but if you don’t actually need help with personal care (and if you didn’t qualify for PIP, I assume you don’t), then that won’t be of much help. Her thoughts about your children are good though, depending on their age, you should perhaps think about how they can help you, by looking after themselves more. Unless they are young.

If your income is very low, perhaps you should see about making a claim for benefits (or maybe you have already done this). I’m thinking you would perhaps qualify for child tax credit and/or income support. You could get your local Citizens Advice Bureau to advise you about benefits.

I hope you do manage to get some support organised. Keep talking to us on the forum, as you can see, there are many people who can offer suggestions as to how you can get help. Best of luck.

Sue