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

Aren’t you a little ray of sunshine?

No false hope. I think it’s a case of use what you do have, and keep your muscles and mindset strong.

I hope your blunt attitude makes you feel good.

More based on reality than giving myself false hope that using something will prevent me loosing it. MS doesn’t work like that.

This is hard to read very hard

When I was first diagnosed with MS, I didn't read anything about it for years, I couldn't face it. I understand where you're coming from. xx

I'm sorry for my part, I had to step away as found it triggering. You may find helpful but misguided people telling you they knew someone with MS but if you follow their example you be fine. MS sadly does not work that way.

Please be comforted by the fact you may never get worse than you are today and may get better. Be guided by your neurologist, your MS nurse and the people close to you who know you well. But remember they wont talk what happens next because MS is totally unpredictable to anyone and they have no idea how your MS will progress. There are those of us who still walk and work years after diagnosis, and there are those with more active MS. Only time will tell.

Be guided by how you and your body feels. If you feel like a walk, go, be in the sunlight (vitamin D is helpful). If you are fatigued, do as much or as little as you can.

Good luck and I really hope your MS is very quiet!

I am trying to walk. Do I walk through when my leg drags along? I keep hoping if I push myself that I’ll manage to walk further before my leg struggles

Hi op. I kept trying to push through but like yourself I couldn’t manage more than a few steps really. No amount of “move it or lose it” would have reversed that. I’m still grieving my previous life but I’ve started to take control and now have a power chair. It’s given me some independence back. I try not to think too far ahead or I become overwhelmed and scared. My MS nurse has been an angel and has signposted me to support groups. My gp also referred me to a neurological rehab centre and neurological psychotherapist. I had a lot if therapy (it’s ongoing atm) and it’s been a massive help.

I wish you all the best x

Sounds like foot drop but thats not something I have yet experienced. Is it very recent as it may be a relapse and may need urgent steriods, or if its something that has slowly got worse. I would speak to your MS nurse if you have one for advice. If its longer term, your nurse can refer you to a physio who can advise exercises to strengthen your legs.

This. My colleague has MS and really struggles mentally sometimes. She still works though and has a parking space at work for her adapted mini.
Her local MS support group has been a huge help and support.

Eight months isn't long enough to adjust to what's a huge life change so please try and find some additional support 🌻

If you are relapsing/remitting you may improve shortly. These days there are treatments available that were not around when I was diagnosed.

How are you feeling now?

Foot drop and walking problems been going on since August

I would ask your nurse if she can refer you to physio in the hope it aids it. Not sure what else to suggest, I do know its a very common issue in MS.

Yes have been seeing physio. They say goal is to not get worse aim to stay at least where I am.

Sadly this is often the case. Hope it will get better but prepare in case it doesnt.

I’m in a very similar situation. Recently finally been diagnosed with MS, although have had symptoms for a good few years.

I dread appointments with the MS nurse. Her use of the word “love” is so forced and so patronising, it makes me irrationally angry.

My mobility took a rapid down turn at the start of the year. As far as I know I am still on the waiting list for the neuro rehabilitation team, but lord knows if I’ll ever get seen.

trying to stay positive, but just too physically fatigued to really deal with any of this