I seem to be losing my way and the person I used to be. Diagnosed with PPMS 5 years ago and mobility and balance is getting worse. I feel as if I am 2 different people. 1 the one who keeps battling, sees the humour, keeps working and says “yeah I’m fine”. Then there is 2 the one who struggles to get out of bed, physically and mentally, the one who wants to lie there and cry, the one who says “why me?” As I write this I even feel guilty for feeling bad as I know there are many people who face PPMS every day and have done so for many years and keep moving on. How do you guys deal with the future and the unknown? Kx
Hi @Blackhill43, goodness quite a moving read. I drove to work this week crying asking myself what are you doing? Today I drove to my parents singing 9 - 5 by Dolly Parton (don’t ask long story). Seriously, feeling like you are 2 people with any long term illness will resonate with many. I think responses to this post will be varied and as such may not provide a concrete answer but at least show that you are not alone in how you feel. Personally, right now I am surviving one day at a time, checking the post for the next appointment letter. Feels a bit like Ground Hog Day…hey, ho… hang in there and keep posting
Yeah, I know exactly how you feel - I think if Im tired im more likely to feel weepy and sorry for myself. Im glad I have my work to go to and put on a happy face. It gets me up and out of the house even when I dont want to and gives me something eles to think about. Obviously I know not everyone has that luxuary so I will keep on as long as Im able.
Keep looking after yourself xx
I completely get how you are feeling. My RRMS had some dire times but my SPMS seems a bit less severe! (if constant)
Hope you are as well as you can be.
I can understand this. Although, I’m at the point where the negative has completely usurped the positive. I liken my situation to a window and a roller blind. The window is the side of me that has lost the will, but I have a thin outer layer ( the blind) that looks positive to other at varying rates (as the blind raises and falls with the light (my mood)). Always feel I’m not far fron the blind breaking and just having that window be unprotected.
Sorry for the crappy analogy
I know exactly what you mean.
I’ve had PPMS 24 years and have been a full time wheelchair user for 18. Need carers for almost everything.
Most years I coped ok, but last year all hope left me and I felt distraught. I didnt know how to carry on.
Then Jesus came and saved. I am so much happier now.
I think it’s a perfect analogy. My blind is definitely a dodgy roller blind that keeps flying up when I least expect it.
I was out and about on a mobility scooter yesterday(im 33) i saw a young man being pushed in a wheelchair. We had a little conversation with his mother and i asked what hapenned with the kid? She said he been in a car accident, received brain damage that left him completely paralised. I thought to myself, and here i am, on a mobility scooter complaining how tough life is.
Despite all these annoying symtops - nystagmus, fatigue, burning legs etc., there is someone who struggles even more.
Its a very tough life, but we have no choice but get on with it.
Hello PBMS, Bouds,
Thank you for sharing on your testimony there.
I too am a born again Christian. And only Jesus has helped me through.
It sounds to me you are going through bereavement caused my MS .
In answer to your question on how I cope and believe me I have had many dark days nearly on the point of despair, I pray . And recently when I felt low I then thought what good things do I have to live for? So as soon as I thought on those things I felt better.
I recommend checking out the website www.thereishope.co.uk
It is always the way, some folks are in a better state and some in a worse state. It does help me realise that it is not all about me. I try to keep this in mind and be less judgmental.
All the best Mick
Thank you everyone who has shared their experiences and kind thoughts with me. Today the sun is shining so hopefully it will be a good day.
I’m new on here but know exactly how you feel being in this state of mind myself, each stage of this It is definitely not easy even with family, friends and carers help and support but I’m hoping that joining this group will help me to battle through this. Sorry I’m not much help but we must try to enjoy as much as we can and not think too much on what was or what life could have been.
I have a question for everyone… I am on a healthy (ish) diet and before MS could maintain a steady weight. Now because I am very much less mobile ie. cant walk unaided I have gained excess weight which even with a calorie counted diet I cannot seem to lose. Any ideas short of missing out some meals entirely? If anyone knows of a diet that works without exercise I would be very interested.
Thank you your message of 2 days ago helps me to think of good things
Its a little grey today and starting to rain. BUT it’s Friday !! Always find the positive xx