I’ve just found out that my appointment with the neurologist has been cancelled. It’s a good job I rang up to ask for directions to the place it would have been a wasted journey and it’s at least an hour a way . I’m not sure whether to be disappointed or relieved, I’m probably mostly released, it’s four and a half years since needing a wheelchair and more than three years since the last mri, I’d resigned myself to living with a condition that I may never have the answers to. Being given an fnd diagnosis and told it was stress never felt right . Saying that I had neither the time or the energy and emotionally didn’t feel in the right place. It feels a bit like going for a driving test only to fail again and again . No body wants to have ms or for that matter any chronic illness especially one that is life altering but to be left in limbo isn’t great either. Anyway I’m back on the waiting list for another appointment, it was a genuine mistake , the neurologist was on maternity leave and they had still taken bookings . They gave me a number to ring if I don’t hear anything but I’m not in a rush to jump back onto the rollercoaster, I hate mri 's I’m terrified of them and I’m not sure I want to feel fake again. I’m not sad honesty in fact I’m happy my Molly (autistic daughter) has just come back from school with a present for me… my favourite chocolate bar, a frys chocolate cream …life is good . Michelle and Frazer xx
Fry’s chocolate cream makes up for admin cock ups Michelle.
It’s a very grey area or should I say continent, between the finer points of diagnosis and the reality of the symptoms. I have an MS label. The neurologist said it was SPMS but I know it’s PPMS. But I’m not bothered to take the time to enforced a rude scribbling out in my immaculate fountain-pen written notes. I too have a very expensive pen which I love to write with but it’s exclusive to my recipe book.
But the sense of limbo can be agonising. I look at this and other forums and feel a sense of sorrow for those who go flying into a medication frenzy. But I’m an old hand. In the future I see self catheterisation and biotin. It may help or it may not. I’ll take whatever makes me feel better. I just like to sit in the background and plot a path of hedonistic delight through this MS quagmire.
In the new year, I should make the effort to re-visit Froddy. Another adventure to look forward to.
Steve xx woof
Thanks Steve , the frys chocolate cream more than made up for in . Mollys lovely, she came running in saying "I’ve got you a present " she’d spent her tuck shop money on it . I’ve waited so long now it doesn’t matter, part of me thinks I may never get an ms diagnosis…does it matter I’m not sure , I just hate feeling a fake. The self cathertising is something you get used to , at least you can get a better nights sleep. Let me know when you plan your Frodsham adventure , Frazer would like to meet up. Michelle and Frazer xx
Hi Michelle
What a good job you telephoned, a wasted journey is no fun at all.
I know what you mean about feeling relieved, it must be soul destroying to have the appointment and then come out feeling more confused than when you went in.
Frys chocolate cream…lovely.
Pam and Alfie says woof to Fraser.
Pam x
Glad no wasted journey!
I went to an appointment on Tues and have another three lined up before the end of the year, the week before and again the after Christmas - it feels so wrong and I can’t get into the Christmas spirit - bah humbug! All three are MS related too so I feel I need to grin and bare it. So I have leg botox, boggly eye clinic & another is the one in London that I’m not quite ready to share just yet as I think I might have missed the boat on but it ain’t over til the fat lady sings.
Hope your new appointment isn’t too far away and you can shelve it for a while
Sonia x
They’ve just rang me with a new appointment, it’s not till Feb but that’s fine . I think it is what it is anyway but at least I’ll have time to get my mind right. I wasn’t ready to jump back into it . I’ve been so tired today I spent most of the day lying on the sofa under my heated throw. Michelle and Frazer xx
Hi Michelle,
So pleased you didn’t have a wasted journey…I hate it if anything like that happens because it’s so bloomin’ exhausting getting ready to go out!
I have my PIP interview on December 20th, I’m dreading it! At least they are coming to my house and my husband will be here!
Take care of yourself,
Nina x