Struggling to cope with life after MS diagnosis and disability

[Anxious24]

I have ms. I can walk for 10 minutes then my leg won’t work and have to stop or fall. I have urinary incontinence. All started and diagnosed 8 months ago. I was so active and happy before all of this. I don’t want to live anymore. I won’t kill myself but pray to not wake up in the morning. It’s no life. Friends and family want little to do with me now I’m disabled. Siblings haven’t seen me in over a year. My parents visit and that’s it. Friends stopped wanting to know me. I have 3 children including a baby. Family haven’t even seen baby

My husband tries to help but doesn’t know what else to say. Keeps saying if I go for walks I’ll get my walking back. But after 10 mins it’s hard and it depresses me more after walking because it screams to me how disabled I am

I’m sorry to hear you are struggling. Do you have a partner? Have you reached out to any MS support groups? Could you also have some postnatal depression? Hoping things get easier for you.

I’ve spoken to ms groups. Suggested just keep trying to walk. I’m definitely depressed. Tried antidepressants and counselling. I think anyone would be depressed like this. Especially comparing it to how life used to be for me

I have MS also. Make an appointment with your MS Nurse and find a support group x

Where are you based?

East anglia

What sort of friends are they if they don’t want to know you post diagnoses? Family too? That’s shocking. Sorry you’re in this situation and so young given you’ve got a baby. Is there anyone kind you could reach out to? Someone with a sympathetic ear or who could help with the children to allow you to rest?

There’s no one. I thought I had good friends but clearly not. And family too.

I have MS too. I’ve been diagnosed 12 years and I have got used to it. It does get easier to accept although I sometimes feel sad for my former life. Reach out to MS groups. Online support groups have been amazing for me. There’s one called MuMS Uk and it’s really good xx

@ThirtysomethingMummy can I ask what symptoms you have?

I have MS and have had it about 25 years. Are you near Norfolk as there is a MS Therapy centre there? I go to one in Reading for oxygen therapy and they do a lot of other treatments too. Are you on a DMT? Have you looked into HSCT?

I’m on tysabri. I’d do anything but how do I get hsct?

Another MS person here, its been 10 years, and like the others, whilst life doesnt get easier, the diagnosis gets less of an issue. You are still quite newly diagnosed, take things one step (literally in some cases).

No one MS journey is the same, you may have similar issues to others (I cant walk far at all but also have urinary issues amongst other issues).

Find people to talk to will help, there are in person and on line groups that you can join. MS Trust and MS Society can help and their forums or Facebook groups.

Also opening to things that may help you isnt something to fear. I have a mobility scooter to use for places I use to walk, a walking stick for short distances. Just remember they are aids to help you live as normal as you can.

You got to keep walking/be mobile. Once you stop that is it.
I cared for a gent who got to his 80’s in 2012 with ms - he managed to work.

I have a paraplegic brother who would have loved to be Dad but a dreadful accident stopped this for him in excess of a decade ago. I accept there is no help/support as my brother has been left a hermit after he left Sheffield spinal unit for home in east Anglia (only now a decade on a nurse from our surgery is trying to change his life and believe me I’ve heard many of our surgery gps asking my brother with a T12 incomplete injury from the waist to get up out of his chair for examination)

I go out with my wraps on walking and rude or at best as I think inquisitive people have stopped me I don’t want my body to swell with edema and be bed ridden at 30+ stone so they can go swivel or learn.

I regularly visit a friend in hospital they spend a few weeks in hospital every few months as being inactive hurts when it would be the preventer to some of these hospital stays, my friends latest is a dnr should anything stop resus wise, my friend is just 49. I firmly believe exercise and not letting the state bed bound you has stopped muscle wasting.

I have found it easier to find a support group for spinal injuries then lymphoedema.

I have epilepsy and MS. I can't believe that friend and family can be like this..
I'm 8/9 years into this but my foot drops ( I've had a stroke as well) and I can walk but it uses everything I have... and lasts about 5 minutes. I'm fuzzy all over 24/7 for 8 years, I have toileting issues.
But, I go to the gym everyday. I work out to the best of my ability. I do 2 classes a day, I have a coffee sitting in the sun. I go out for lunch, I see my friends and family.

It feels very lonely, and it will be if you give up. Get out there and do what makes you happy.

I’ve got MS. What treatment are you on? Huge advances have been made in the last 10 years. I was relapse free for 11 years after starting heavy duty DMT’s.

My DD was diagnosed three years ago at 17 just before her A levels. It explained a lot of what she’d been experiencing since she was 13. Now at uni she’s on Kesimpta and other than fatigue seems to be doing ok. She doesn’t tell anyone she has it as people react weirdly sometimes. She’s very driven and ambitious and this summer will spend six weeks in Columbia on an internship - she is getting on with her life. It’s a shame you have no support - but are you letting them? People tend to bottle things up and not reach out. Do so. Ask for help. People may surprise you.

I'm so sorry to hear about your diagnosis op. It's very stressful and upsetting, saying bye to a life you'll never have again. And working out how to live with a new reality which is unpredicatable. It's hard.
I was diagnosed 25yrs ago. If I was you now I'd try and start the process of getting HSCT (which wasn't a thing as far as I knew all those years ago). You need to try 2 DMTs first, then if eligible HSCT. So it takes time. Your Neurologist can tell you about it - do you have a good Neurologist? If not you can change.
There's a website called MS Selfie which is an excellent source, run by a very supportive Professor of Neurology based in London. You can also ask him questions via the website. Part of it is paid (20GBP per year or something) but not all.
I'm sorry your family and friends aren't supportive - is it that they actually don't understand how bad you feel, how devastating it is?
Hugs and love Op xx

PS. Swimming is sometimes better if walking is too much.

Hi OP, I’m sorry to hear you’re having such a tough time.

My DS was diagnosed two years ago, after first showing symptoms when he was 19 - so he’s had MS for almost 10 years now. He’s doing well - in that time he’s completed a degree and a Masters, and he’s just got a job.

He had his first infusion about a month ago, which aims to stop disease progression. Apart from fatigue, slightly wonky balance and the MS hug, he’s doing ok.

He goes to a PT once a week, and it’s so important to keep moving if you can. Yoga is said to be very beneficial.

Your shock and low mood is understandable. To be honest, I went through the same as his mum, and I’m only just getting a grip. But treatments are better than ever, and I’ve heard it said a lot lately that we’re only a decade from a cure. My son’s MS nurse is a valuable resource.

I understand also about how rubbish families can be. I’ve gone no contact with most of mine, largely because I found their utter lack of support for us through what was a shitty time totally unforgivable.

Incidentally, I’m walking the Coast to Coast in August to raise money for the MS Society - I’ve raised over a thousand pounds already. Every step is a step closer to a cure.

Stout heart. It’ll be ok.

Just so you realise, that isnt how MS works. Its not a case of keep doing something or you lose it. With MS, you can continue to do something unless your cells decide to chew the bit that controls it. Urinary issues (which v common with MS people) happen despite you needing to empty your bladder regularly. Your spinal cords damaged in the wrong place and you no longer control it.

Did you have to put it like that?

Everything I’ve read, everything my son’s neurologist has told him says otherwise.

It’s a complex condition.

https://forum.mssociety.org.uk/t/use-it-or-lose-it-but/12675/7

I'm sorry to hear you are not getting support from your family. I know several people with ms, being part of a support group is really helpful. One friend runs a self help course. Look at oxygen therapy, there's a great place in Edinburgh but there will be others. Frame running can be great as you are totally supported when moving, you can just contact a club and go to visit. You only need to go for five minutes if that's all you can manage. Horse riding is brilliant for ms too and really helps mood and general well-being. Look at Riding for the disabled groups nearby.
Also, it's fine to grieve for the life you won't have but plan for what you can do. I hope you get some real life support. Ms is so variable.

Because saying use it or lose it is quite upsetting to those are losing it through no fault. I'm sorry your son's neurologist is giving false hope that he has any control over future relapse damage may cause, excercise will help but it wont prevent damage.

It must have been such a shock to get this diagnosis, no wonder you are having a difficult time of it, as it is still very new and hard to get your head around.

Talking to other people with MS might be useful, I see that you have tried groups, but it might be worth persevering with support groups, as it can be isolating after a diagnosis of this type and speaking to other people with a diagnosis may be beneficial.

Although things seem bleak just now, there may be various things that can help, both physically and emotionally.

If you’ve recently had a baby, the urinary incontinence may not be solely MS related. Help is available for continence issues, there are sprays or even Botox that can help, I know several people who have had great success with these.

MS is a difficult diagnosis to deal with and you life is stressful enough with several children including a baby, hopefully your partner is supportive, but he may also need help to understand the impact this is having on you and how best to help you, as it is still quite fresh.

You said you’ve not got much family support, but could you reach out to them? They may not understand the impact this is having on you and if you had good relationships before, hopefully you can get some support from them.

Have you had any contact with social work or OT? You might be able to get walking aids to assist you. Also, ensure you are getting all the relevant benefits you’re entitled to.

Do you have an MS nurse? Have you been offered any post diagnostic support? Please contact the MS Society for signposting if not. They can also provide info on support groups and practical help.

Do you know what kind of MS you have? I see you are on Tysabri, which was what a family member was on who had relapsing remitting MS. There are so many different types of medication and symptoms and how people react to medication can vary so much. They have been on a few different kinds, they were even on infusions at one point too, I can’t remember the band if what they’re taking now., but it’s a tablet. When are you next due to meet with your neurologist? It might be worthwhile discussing other options available, as some medication has side effects that may impact you.

Hopefully tackling these things will help you feel more in control and also get the support and help you need - good luck xx