Sometimes I still can’t quite believe this is happening to me.
Sometimes I wonder how much more I can take.
Just as I get used to how bad it is, it gets a bit worse and I have to adapt all over again.
Sometimes I’m angry and frustrated.
Sometimes I’m stoical and upbeat.
Sometimes when people ask how I am I think I should tell them how I am really, instead of the standard, fine thanks.
Sometimes I want to scream, sometimes I feel like crying.
Mostly people have no idea.
How true and beautifully written.
Mostly people have no idea… except on here. We all know what it’s like Flowerpot. You are not alone.
Pat xx
That was beautiful flowerpot, thank you
xxx
Flowerpot,
I do feel for you as you are so young. I am 61 but I do have a son who also has MS and he is only 36. We do support each other and that is comforting. However, I know what it’s like to be angry, frustrated and exhausted by the end of the day having done very little to deserve to be so tired. Some days even the simplest job seems like one of the twelve labours of Hercules. What a vile disease.
Best wishes
Alun
Hi Alun
I’m flattered that you think I’m young! Actually I’m 59 and was diagnosed a few months short of my 50th birthday, so all things considered I’m not so badly off. I didn’t expect things to progress quite this fast though, I thought there’d be little or no change for a long time. That proved to be a forlorn hope.
There are some wonderful people on here. xxx
We hear you flowerpot. People mostly don’t have a clue what it’s like but we do here. We know what it’s like truly to live with, everyday’s a mission, a battle of some sort. From having a shower/getting dressed to braving the outdoors cos you need a food shop… Whatever, everything’s so bloody hard! I was actually sitting thinking earlier on today, what it felt like to just wake up feeling & being normal. It’s been that long, too long that I’m starting to forget! I feel bad for liking your post since you’re obviously upset but the way you wrote it was… well, lovely! Stay strong, remember you’re not alone, you’ve got us lot of misfits & allsorts x
We all understand Flowerpot, your words relate to anyone of us.
People who don’t have MS will never fully understand…but how could they know.
Pam x
Sometimes I want people to walk in my shoes for a while
Jan x
Don’t feel bad for liking my post. It’s good to know I’ve got such good understanding friends here.
Feeling “normal” now wouldn’t that be a good day!?
Thanks everyone. I’m not sad or upset, well only sometimes, but I do feel cheated out of the life I lost, but I have some good things and good people in my life. I love you all xx
and “Sometimes” we just need to say things out loud
Jemma
Yes, I am alarmed at the speed of progression, especially in terms of mobility and fatigue. I can only walk short distances now using a stick and cannot cycle as my balance is all to pieces. I have a mobility scooter which is now an essential item. I am allowed to drive but i am very reluctant to do so as my legs may not always respond quickly enough.
I have just resubmitted a PIP application as my mobility is significantly reduced; at the moment I have the standard daily living allowance. Of course, a full resubmission was required. I have read that some people were reassessed over the telephone without the full ATOS interrogation. We shall see. At the risk of ranting, why cannot an application be made on-line as typing is much easier than hand writing. Modern software would allow you to dictate your additional information, which would be even easier.
Flowerpot, thank you for the update and I did not mean to embarrass you. Your profile suggests you were born in 1988. We are all young at heart; I just avoid mirrors.
Best wishes to everyone.
Alun
Sometimes she cries. … love my Warrant. All here for you FP !!!
I’m not embarrassed. I don’t know why my dob shows up as 1988, I was born in 1956. Good luck with the PIP.
I submitted a claim in July having deteriorated since I was first granted DLA, I had highest rate mobility and middle rate for help with personal care.
I was granted the enhanced rate for both mobility and help with personal care. My face to face assessment took place locally. I was advised that if I got an appointment involving travelling to ring and say I couldn’t do that.
i don’t drive any more, giving that up saddened me, another nail in the coffin of independence, but I made the decision rather than allow something to happen which would force me to stop. I lurch around at home on crutches, wheelchair or crutches everywhere else.
Thanks for your support.
Know just what you mean flowerpot, i had to give up driving a few year ago,it really upset me, because i learnt to drive,as i was losing the ability to walk more than a few steps,
i was 38 when i learnt to drive,was never botherd about learning,but it gave me back a lot of indpendance, so it was taken from me twice,i dont miss driving now though,once i got over the upset.
thats what i hate about MS you find a way round things only for that to be taken away too,b****y… MS I HATE IT…
J x
So true! x
And sometimes, like right now, I wonder what it was I did to deserve this 
Iv’e just read your posts fflowerpot , and agree with everyone else its sad, but so beautifully written…Iv’e been using a wheelchair for 2 and 1/2 years and still shudder when i’m out and the thought hits me …what on earth happened to me ! I wish there was a magic button to turn back the clock!
Michelle