Hi everyone, I’m really struggling. I’ve just started using a wheelchair and I’m finding it hard - physically and mentally. I suffer with oscillopsia most of the time which is ruining my life. I pray to be able to see straight for just ten minutes. It’s gone from being intermittent to near constant. I’m still at work, I do 22.5 hours a week. I dislike my job. I came out of a six year relationship in June and had to relocate and as a result I have to drive further to work and I’m knackered before I’ve even started. I don’t have help and do battle with the chair before I start. I change my nappy and catheterise. Then I start. I wouldn’t do it but without the money I’d be stuffed. I privately rent as there was no accessible council housing available when I came out of the relationship. Without my salary I would have nowhere to live. I am 35 and was diagnosed 6 years ago, and have gone downhill pretty rapidly. My self confidence is at an all time low. I got together with my ex just before getting diagnosed and feel he got my last good years. Who will ever want me like this? I don’t even want myself. My uncle committed suicide in September and it left a lot of hurt. I said to myself that I would never do that after seeing what everyone went through then, but I feel so trapped. Trapped in a broken body, trapped in a job I don’t like and know that I’m not really able to do any more. I take Gabapentin for my eyes which does help but it rarely stops now unless I drink or take ketamine, both of which are terrible for me. Any ideas? Thanks Edit: ps this is all making me extremely stressed which I’m sure is making my symptoms worse but I can’t seem to get off this damn merry go round!
Sounds like you are really going through the mill at the moment. Vision problems are a nightmare, I have had diplopia for 3 years and is now corrected by a prism. Can Oscillopsia also be corrected in this way do you know? Might be worth asking if you haven’t already.
I can relate to the feeling of having to keep working because you need the money and pushing yourself beyond sensible limits in order to do it. You are right that MS symptoms can be badly affected by stress but it’s not as easy as just saying don’t get stressed, if only it were that simple!
You don’t have to answer if you don’t want to but have you considered getting any counselling / emotional support for what you are going through? If money is an issue and seeing someone privately isn’t an option there are organisations which offer free or time limited appointments where you can talk to someone. It really sounds like you need to be able to offload to somebody.
Samaritans ( tel: 116 123 ) can be contacted 24/7 for absolutely any reason and will listen without judgment; or Cruse bereavement helpline (tel: 0808 808 1677 ) are open M-F 9.30-5.00 would be a good source of support regarding your uncle’s suicide. People don’t realise how much mental health is affected by MS and when you have problems with both it can feel like the whole world is crashing down around you.
I hope you are able to find some support for the difficulties you are going through.