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my blog on HOW I COPE with having PPMS

I have talked extensively to so many people with MS. I belong to many groups. We all have our own ideas on how to cope with this disease, some are the same, some radical, but the end game is how do we cope with it and also how others think we should cope with it, who dont have MS.

This is how i cope with it for NOW. Its only my personal take on it.

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Hello Crazy Chick , I loved reading your blog , it was very well written and I identify with a lot of your thoughts. I’m still undiagnosed or rather left with a very vague umbrella form of of diagnosis which is Functional neurological disorder …the more I read about it the more I feel abandoned and left to get on with things. One thing which I use to help myself is being positive …its not always easy I have my down days and time when I feel as if I just want to turn the clock back and be walking, running , driving and being the “old Michelle”…but that will never happen at least not in this world …I do have a faith though and my spiritual belief helps me see that its not going to be like this forever. But for now I try to help others , doing a bit of voluntary work and just trying to be kinder …surprisingly when I stop focusing on myself, I’m much happier. I also try to be grateful for some of the blessing I have …sometimes when you focus too much on the bad things you can forget all the good things . I’m not perfect I admit I worry about my children. Three are affected by autism , Ben and Molly my 22 year old and 18 year old are both going through issues just now. Yes it makes me sad but it helps me to pray and to meditate and I can even feel calm when things are hard. Which is why I loved your blog because some of your strategies are similar to mine . Take and keep writing apart from Steve Snore, I haven’t read any blogs on here for a while. Don from Margate used to write blogs and I loved them. Terry (puddle) I always look forward to hearing from you too. Michelle and Frazer xx

Hi thank you i write what is in my head lol. I know its hard to be positive when you have MS but really it achieves nothing to deny it or fight against it, is how i personally feel. If i had cancer i would fight like hell to get well. Its in me. I have faith too and my daughters both have their own issues to deal with so i know i have to be strong for them even if they are 44 and 48 they are my two sides of my heart. I have 4 grandchildren all with issues. to be honest i said to my brother the other day it is getting to the point where i know more sick people then well people and now that is really scary. I am writing a new blog now about animal therapy and healing. I was never a writer until i got this disease its bizarre its like my brain has suddenly opened a new avenue for me. My father had Lupus and he would always write his thoughts down early in the morning, and to some extent i follow him i think. FND is a disease in its own right. I hope your diagnosis is not just a give away one, as one neuro tried to tell me I had FND, he was a third opinion that i went to see. the first thing he said to me was i havent had your notes yet but once i get them i will review what I say. He told me quite plainly he thought i had FND. If it was FND he would send me to the special therapy clinic in bristol area which is for 3 or 6 weeks i cant remember which. I said i dont care as long as i can get better go for it. 2 weeks later i got a letter off him. I have now received your notes, and I am sorry to say I can no longer give you a diagnosis of FND. If you need any more support please feel free to contact me…blah blah or words to that effect. the reason why he couldn’t is he realised my notes were full of positive things for MS. They can only say its FND if everything is clear. It can be resolved though FND i did read up about it and i think your handling it well, volunteering is a great way to focus on other things. I always think no matter how bad I feel there is always someone out there who is worse. xxxxxxxxxxx you take care big hugs. xxxx

Hello CC. Yes, I can relate to all your points. The blog, as you know, is a fine way of rationalising about our situation. Don’t fight the beast head on. Outwit it with artifice and playing along. I feel a blog coming on myself. Take care.

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Thanks for your kind words Crazy chick, the issues I’m coping with have changed my life , I’ve basically been abandoned I’ve gone to CBT which helped me come to terms with being in a wheelchair but didn’t give me my mobility back , I try to accept that this what it is, and at the end of the day we don’t always have an answer for everything. Trust me what ever they call it there isn’t a quick remedy. Michelle and Frazer xx

Hi steve, oh i hope so, i really enjoyed your last one it brought back a lot of memories how life used to be. xxx

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