Progressive MS can be (is) a really scary/hellish/dark place to be, there are however (can hardly say lucky) people with Progressive MS that manage on their own every day and fight the F**King beast. No two people will suffer the same way so although it is a scary diagnosis please don’t assume the worst!
I like to think that I have a very positive outlook on this beast, I was having nightmares about what could happen -
Mark Twain - “I’ve had a lot of worries in my life, most of which never happened”
Hi M, Thanks for those positive words. It’s sometimes hard to see things in a positive light but I do try. It is best not to think of the worst that may happen. I hope you’re feeling as weep as can be expected, Teresa xx
The time is fast approaching for me to finally hold my hands up (this is a figurative term as lifting both arms above the shoulder is impossible) and say “no more work”! It is not the sound of submission but the announcement of a change of direction. Accept your limitations but exploit your gifts. Fight the monster, it has no right to rule you. I will shout this at every opportunity.
Great words M. Yes best to live for today and not think about the future! Once you get the hang of living one day at a time it’s like a gift.
Steve, it was great when I gave up work. No more struggling on with fatigue and trying to hide symptoms. It is not submission… it’s simply an acceptance that it’s time to make a change. Without MS I would have worked well into my 60’s… but MS came along and plans had to change. That’s life.
“Life is what happens while you’re busy making other plans”. John Lennon
MS happened to us… but we are still here and we are living our lives!
Hi M yeah I agree with you that PPMS can be an awful place to be but like you I try to keep optamistic.
Some days can be bad others not so bad and I try to see the positives to having a disability.
I get DLA wich helps a lot and increases the amount of JSA I get
I have a blue badge which makes parking easier and usually free
I get free road tax a saving of about £130
When I get my own flat I can get a recliner chair VAT free
Mobility scooters that I borrow when shopping as well as being esential are actually fun to use
Ok so I struggle to move most days and struggle to stand for long periods but I think the benefits that I get because I have PPMS far outweigh the negatives and it could be a lot worse.
I have a mobility scooter which is great fun to ride
I moved into sheltered housing which is the nicest place I’ve ever lived
I get DLA which enables me to get taxi’s and to have someone do my cleaning and help me
I have lovely supportive friends on here
I no longer worry about the future… I just live for today
Yes there certainly are positives to having PPMS and it could be a lot worse. PPMS has taught me so many important lessons about life and I’m am a better person because of it.
I must be feeling a bit soppy today so forgive meI am positive for everyone so much of the time I don’t think they ‘get’ this Progressive MS thing but my gang does.
Don’t ask for forgiveness M. This thing screws around with your head. You are always full of fight and are bound to have emotional days. I’m right there with you atm too. Keep trucking on - you know you always do! Teresa xx .