Hi everyone. Hope you’re all coping. Got to tell you I’m not. To cut a long story short I have only been taken by OH to the coffee shop to meet a friend who also has MS and was diagnosed five years before me (1995) and we’re both SP and has had a “relapse” at the same time as me. She has faired better than me for she can still move. I thought I could but we sat for a couple of hours catching up and then when I stood up to leave my right foot tipped over completely and I could not move my right leg, I cannot move with my rollator, but I could not move at all when my foot went. I had only walked five yards before it happened. I don’t have a positive outlook, like my mate, and just thought when it happend “OK, that’s enough I can’t cope with this any longer”. My OH got me into car but then the right leg went completely rigid again. This “relapase” has been happening for four months now and this b… disease has finally caught up with me big time. All I can see in front of me now is being a full time wheelie. Not sure I will be able to do that. Linda
Linda hun, I am so sorry you feel down but tomorrow you could wake up and things could start to feel better, it is entirely possible cause this horrible disease to so unpredicable and so personal.
And if things do get worse I would ask you just one question - which you would prefer, not to use a wheelchair and just sit in the house, never seeing your friends, feeling the sun and the wind on your face or to get that wheelie and use it to help you to continue your life.
Every person I have spoken to on this forum is a fighter and yes we all have our bad days but none of us have given in to this disease. Please don’t be the first. The days are going to start getting brighter and we all feel better when that happens. Hang in there hun, remember that you may not be able to lift your leg high enough to kick some bottom but you can certainly run over it in a wheelchair.
Huge hugs for you hun, I wish I could do more
JBK xxx
Hi, thanks for your support. Things went from bad to worse yesterday eveing and I had a complete emotional meltdown, crying and wailing for 3 hours, nothing my OH said would make me feel any better so he made me a meal and then I went off to bed. I woke this morning still not feeling great but at least I have stopped crying - OH still supportive even though I told him that this is never going to get better and he might as well go and have a normal life elsewhere - he was not impressed but flatly refused to give in. I’m not obviously doing anything today just trying to get my head together, I know I mustn’t give in but still feel a little bit like it would be so much easier. That was the first real meltdown I’ve had in a long time and I didn’t enjoy it all. As I said to my OH everything else that has happend in my life I had a choice about but there is no choice with MS it will happen whatever and there is not a damn thing anyone can do about it. It feels so demoralising not having any control over this. Oh well now I’ve just got to get my head together and not let this situation rule everything else. Linda x
Linda love, listen.
I fully understand the feelings you`re going through just now.
My own progression from being fully active, running a home, bringing up kids, working etc was so rapid, it literally knocked me off my feet within a year!
I`ve now been a full time wheelchair user for 10 years! Yeh, 10 years!
You just gotta get to grips with the idea, if you do need a wheelie full time.
Please believe me when I tell you, using a wheelie all the time is NOT the end of the world.
Okay it`s different, ok you may have to make alterations to the house like we have, to acommodate a wheelie.
Going out in a wheelie is so much more enjoyable than dragging yourself round shops etc and coming home much sooner than you`d like to. Then needing a couple of days in bed to recover.
I know it stinks luv, of course it does, its a xxxx, but its here to stay and we WILL live through it, because we have an inner strength that will get us there…sometimes we have to dig deep to find that strength. PLEASE keep trying.
lots of luv, Pollyxxx
Thanks Poll. I must admit since I’ve been visiting this site I’ve read alot of your posts and you manage to stay upbeat and positive in them. Where do you get your stamina? It’s the afternoon and I’m feeling a bit better (I think that’s because OH was talking sense) and hope I can ride this out and get back on some kind of track. This situation was getting silly but I’ve got to get over it (on the other hand I could just go to bed and never get up again) lol! Thanks for your support. Will keep updating on how it’s going. Linda x
Hi again Linda.
I havent got much actual stamina, as my day is short and i spend a lot of time in bed.
I get up around 9.30am when my carer comes. it takes up to an hour to sort me out with showering, drying, seeing to my spc dressing and wound, dressing etc.
I usually take the previous days washing off the airer, sort it, put wet washing on the airer, then its lunch time. After that i do a couple of hours on here and snooze in my recliner, and watch telly, then it`s tea time (hubby makes my cooked meals) and I sometimes help with the washing up. Then loo time and off to bed.
So my days are short. I only go out once a week, with carers to see a film, do some shoping, have lunch. If I have medical appointments then I have an extra outing!
I do get tired, of course I do, but I guess my natural upbeat-ness wins through most of the time.
Dont get me wrong, I can also be a moody chuff at times!
Think about what I said about wheelies…why torture yourself with dragging your body round when wheels will do the job for you, eh?
much luv, Polllyxxx
HI THERE,
I’D JUST LIKE TO SAY TO LINDA THAT I HOPE YOU START TO FEEL MUCH BETTER SOON. I UNDERSTAND HOW YOU FEEL, I’M HAVING A BIT OF A RELAPSE JUST NOW, MY FIRST SINCE MY DIAGNOSIS AND I ADMIT TO STRUGGLING WITH IT. THE TOUGH PART HAS BEEN TELLING MY HUSBAND THAT I NEED HIM TO DO THINGS FOR ME, ESPECIALLY AS I USUALLY DO EVERYTHING AROUND THE HOME. HE HAS A VERY STRESSFUL JOB, PARTICULARLY AT THE MOMENT AND SO THIS RELAPSE COULDN’T HAVE COME AT A WORSE TIME AND SO I’M JUST HAVING TO TAKE THINGS ONE AT A TIME. THERE IS ALWAYS A LIGHT AT THE END OF THE TUNNEL, SOMETIMES IT JUST ISN’T VERY BRIGHT BUT IT IS ALWAYS THERE.
POLLY, TO YOU I JUST WANT TO SAY THAT YOU SOUND LIKE A TRULY INCREDIBLE PERSON. I ONLY JOINED THIS SITE LAST NIGHT AND I’VE BEEN READING SOME OF THE OTHER POSTINGS AND I FIND THEM ALL AMAZING, PARTICULARLY YOURS. IT’S EASY TO BE ANGRY ABOUT THIS DISEASE BUT I THINK THAT ITS IMPORTANT TO TRY AND STAY POSITIVE AND YOU CLEARLY SEEM TO DO THAT. THANKS.
SARA
Hi Sara. Thanks for your comments. I, like you used to do everything around the house up until this episode. I’m not in a relapse but a natural progression, I had 15 fair years and as I’ve always said it was going to catch me sooner or later. The decline has been rapid (like Polly says hers was as well) and it is very difficult to accept but obviously I’m slightly more positive today (don’t know how long that will last - tomorrow could be totally different) and trying to move on. OH is back to normal being the saint he is and just getting on with it without saying anything! As I’ve said anyone who is on their own or who has kids my hat goes off to them. Sara you will be glad of this site, at least you can converse with people who have probably been through everything we’re experiencing and more, so welcome.