Hello all I have spms i was diagnosed 4yrs ago. Since then i have slowly got worse. The problem is that i am very down and feel like nobody understands how I feel and the feelings of being alone with people in the house. Sorry just needed to talk.
Hi, It is quite normal to feel like that as only you know what it feels like. Rest assured you are not alone, not on here. At some time or other we all feel alone and it’s a horrible feeling. I to have spms and am slowly getting worse but you do adapt to it and get on with things as best you can. Have you explained to your partner exactly how you feel, if not, try to, but remember there is no way they can imagine what pain, fatigue and all the other symptoms feel like. I hope this helps you and if you feel like having a moan, rant or shout out everyone on here will listen. Sending you ((((HUGS)))) just to let you know you are not alone and feel more positive very soon. Janet x
Hi Janet Thanks for your reply it is nice to know that it is normal but it is hard to shake the feelings off. Today my legs have felt strange and now i have trouble walking around the house without grabbing or holding on to things my walking is bad enough normally i think a wheelchair is on the way and its a scary thought just another thing i have to give up that seems all im doing at the moment. Well life still goes on
I had to have a heart to heart with my other half last week. I had ecome very isolated and miserable and we were drifting apart. She explained her fears and how snappy id become and i explained mine. She did not understand the pain i am in daily, but it seems to have worked out quite well. Things are alot easier. Talking will help
sounds trite i know but hang in there, google the spoon thoery, its a good way of explaining to others how we feel
Think we all go through this at times. More so when our bodies are not performing! Hope your feeling brighter soon x
Thanks Daisy was unaware of that spoon theory, it is a good way of explaining things.
Thank you so much for telling us about the spoon theory. I watched it on YouTube with tears and smiles, I put it on my Facebook page. Some will watch it, some won’t and that’s ok. It makes me realise and be thankful for the people in my life who help me save spoons. Sara x
Hi, I know the feeling of being alone in a crowded room.
A word about the possibility of getting wheels.
I know it isnt how we saw our lives turning out, but i`ve been a wheelie for 9 years full time and a few years part time before that.
I was having so many risky falls and the fatigue was chronic.
I now see my wheelie as my legs and my best friend.
It gives us energy and a bit of independence back.
When and if you decide to go for wheels, get a proper assessment from wheelchair services.
I didnt and bought 3 chairs myself and ended up hurting myself, as they werent right for me.
Poll beat me to it about the wheelchair.
This morning I got the Access bus into my little market town – I went to the library, poked round the market, had a coffee (and blueberry muffin) and finished up with Sainsbury’s. As I sat in the sun waiting for the bus I knew none of it would have been possible without my wheelchair. It seems like the end of the world getting wheels but it’s really not.
I’m SP and getting slowly worse and find that I am using the w/chair in the house more and more but it makes life so much easier. I enjoy the challenge of finding out how to do things from the chair. My s-i-l suggested all terrain wheels so I could mow the lawn but I think he was just trying to get out of a job!
i can’t take credit fot the spoon theory as we all good things i was told it by somebody else but i’m glad it helped. I always refer to deafness as a “no white stick” situation, I’m sure its the same for MS, beacuse sometimes no outwards signs then people cant comprehend.