@Brendan 

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Brendan

Losing the plot?

Hello everyone, I'm spms, diagnosed three years ago, apparently had it for nearly thirty years but only in the last four years has it made itself known, unfortunately. My question is this, has anyone else found that since diagnosis, there is a kind of ambiguity to many aspects of life? In my case I just seem to be floating when it comes to various decisions, work, food, what to do? I seem to be in a world of my own and can't really focus on things that I might have once done. I'm slightly depressed at the moment (not badly, I must add) and I find it difficult to snap out of it, just wondered if I am on my own with this one, or if anyone else has felt the same way?
@wobbleone

Hi @brendan I am in a very similar place to you at the moment and can’t make decisions or concentrate on the work I need to do. I’ve had the year from hell with family health & bereavements or as my son says “not just one year” 😔 I’ve had severe fatigue since June, worse than anything I’ve ever had and am really struggling to pull myself out of it, I’ve carried on for too long juggling too many balls and have finally hit the wall and am just floundering. I’ve been too independent and now I’ve got to make myself finally accept the limitations from my ms . I was only diagnosed last year but have had it 20yrs + I am finding it hard to get over the frustrations of the delayed diagnosis and now not meeting the criteria for DMD’s, I worry about the future, I’m frustrated with the things I can’t do and am constantly apologising to people saying that “I’ve lost the plot”. Sorry that none of the above is of any help to you but you’re certainly not alone. 🙃

@Brendan

Thanks for your reply wobbleone, it makes me feel a bit better knowing that I am not alone in feeling like I do. Strength in numbers and all that. Reading your post again you seem to be very similar to me, I've been self employed for thirty years and it does make you perhaps too independent, and perhaps too proud to ask for help. My diagnosis came out of the blue and was a real shock, too much to take in really, I still almost can't believe it, even after three years! Thank you, all the best, Brendan.