Oh lordy Moyna, you have been through a lot to still be left in limbo. I know exactly what you mean when you say you feel you could relax if you knew. It’s having a known and recognised condition that helps come to terms with it, spend time with it and get to know and live with and manage it. I feel the same. The unknown is much more difficult and I feel guilty for taking rest and not just carrying on as I would if things were ‘normal’. It is difficult to come to terms with a new reality that has no name, or one that we don’t know yet. It makes it harder to help others understand too.
Fish, sorry to hear you having problems with your leg today Excellent description of foot drop, mine sort of felt as if it was a weakness in my leg that was preventing me lifting my foot high enough to get sufficient clearance of the ground. I was constantly tripping on pavements, and over my own feet.
Sparky, I agree with Fish, go for the stick !! I felt sort of stupid and almost a bit embarrassed at first until I realised how stupid that was and how much more embarrassing it would be to fall over. Even on ‘good days’ when I don’t feel I need it so much, it is reassuring to have it, as my leg invariably will start playing up if I have to walk even a moderate distance and it does help with the balance issues.
Thank you all for your replies, you have made me feel much better and I am not quite so fed up today
Glad you feeling a bit better sally can i share somthing with you and feel free to have a chuckle i have found it. Hard to get dressed on a morning i cannot lift my left leg to get my knickers on hope thats not too rude and also my trousers well the other day i tried and fell over backwards my daughter hearing the bang ran upstairs and found me on the fall with my knicks round my ankles lol what a sight we just laughed till our sides split but it did hurt.if i bend my head forward i cannot raise my leg its weird and very painful in my groin.
Lol Sparky, me neither if it makes you feel any better underwear, trousers, socks, shoes, can’t lift leg high enough, or to wash foot in shower either. I have also ended up like an upturned turtle several times, particularly when crouching down to get something out of the freezer for instance. As long as you haven’t hurt yourself, I do try to find the funny side of things, like trying to tell someone that my feet were so cold even with 3 cups of socks on!! I’m not sure where or how the cups came into it !!!
Just a few bruises thats all its helped talking to you i know im not alone and someone else has the leg problem like me im off for a nap now actually proberbly be morning when i wake take care x
i felt the same , sent two nurses to my house , I might as well have spoken to the dustmen , they were rubbish ended up in tears when they left. How do they get these jobs I want to speak to someone who actually has ms not someone who keeps telling me every case is different !!! I cry most days believing I’m not normal .
I got my PIP decision through the post on Saturday. No support is the simple answer!! They say I obviously have mobility problems and that I obviously have a progressive illness/disease but I am mobile enough to look after myself most of the time. It more or less says come back to us when you have progressed to a state where you cant. It seems struggling day to day with an illness that is rather scary, leaving me worse after each flare up, stopping me from quality time with my children, causing me stress with my boss and not knowing where or how I will be in a year`s time is enough to qualify. Hey ho as they say
Sorry to hear that Ian It’s pretty sickening isn’t it when you know you need some help. I have my assessment next Friday. I am quite sure I will not get any either and don’t know where to go from there in all honesty as without it, I shall be forced into a position of giving up a part time job I can currently manage, and try to find a full time one, (which I know I won’t), as I will not have enough money coming in to live. I am dreading the assessment, I feel like an animal in a cage, being poked to see how much I move. Feel like I am waving goodbye to any quality of life as I can only just manage the stress and fatigue now, let alone at full time hours.
I do think the system is unbelievably callous and has been fuelled to the point of hysteria by all the media ‘benefits street’ type programmes and articles into making people inflamed and viewing anybody on benefits as some sort of low life scrounger.
I am not looking to live off benefits and sit back and do nothing for the rest of my days, I want to continue at work as long as I am able and to be able to manage my condition, whatever it turns out to be, and have some quality of life. and I need some help to do that.
Sorry again about your news. You have every right to be angry, I feel.
Cheers for the support. I am working full time but am taking more time off for appointments & sick as things progress. The lady who came to see me was very, very good, so dont worry there, the physical checks are minimal and they do not push you. I hope that is of some comfort?
I think you are right with how the system is working and how people on or looking for benefits are perceived. A minority are making it very hard for the majority to make genuine claims (IMO).
Good luck with your assessment, please keep us posted on how it goes.