Hi all, I’m Pete. Bare with, this may jump from one thing to another.
Im 34 and been diagnosed for about 14/15 years now. I feel lost. I don’t want to sound like im just moaning but I don’t know where i can find support.
As a preteen i complained about my health a lot, to which i basically met a brick wall of, “its just growing pains”. I gave up asking for help, because, well, doing the same thing over and over again and expecting a different outcome is insanity.
I dont trust myself, i dont trust how i feel, I’ve always been wrong after all.
Ever since my diagnosis everyone now wants to take back the independence i was given and now want to “help”.
I feel my neurologist and gps dont listen to me either. I don’t trust my neurologist, he gave me permission to lie to the MS nurses and it put me on edge.
Being diagnosed young and having symptoms such as pain and fatigue from around 11, ive not been able to have much of a life. I find it hard to be around people for this reason. Its hard hearing healthy people talk about their life experiences or people who were able to experience things before this monster latched onto them. I know that sounds selfish but still trying to fight fatigue and pain has my mood very deeply in depression.
Im not fully sure what im looking for right now, maybe just to vent, maybe see if anyone can suggest any tips for trying to move on.
I do want to ask about MRI scans but feel I’ve already taken up too much of your time.
Hi Pete, it’s ok chuck…vent all you need on here…cos we get it
How rotten to have your childhood plagued by poor health.
MS is an awful lot to accept and then somehow to assimilate it into your life, takes some doing.
Re MRI…what’s your question? I’ve had 4…the 4th finally revealed it’s secret…22 years after fruitless searching…2 spinal lesions.
Those 2 little monsters were enough to cause paraplegia in the first few years.
Since then I’ve needed help with just about all aspects of life ie personal care, putting to bed/getting up, household chores, taking out, socialising etc.
18 months ago I hit rock bottom. I didnt know how to cope anymore, felt lost and weary.
Then…wow!..I prayed to Jesus for help. He came to me. I became a born again Christian.
Functioning is no easier, but I have new outlook on life, with Jesus at the centre.
Hi Od Pete, I can’t imagine how at such a young age you could deal with ms. I really do feel for you as at 48 years old it has been hard to get my head around it. Everyone in this forum will help in giving you advice and listen when you want us to. What did you want to know about mri scans? take care Angie.
Hi Angie,
Its been tough. Especially trying to get help from anyone. I know its tough on everyone but being told i wasn’t allowed to complain about my health issues left me silent, hence why its taken so long to try contact people.
Its more i dont trust my neurologist and i believe i have seen two black holes near my frontal lobe but i could be wrong. Dont want to ask him as he’ll call me a liar
Pete
Hi Pete, I was officially diagnosed with ms when I was 19 although I’d been ill since 14 and like yourself feel life has passed me by. I’ve a 21 year old daughter who is away living the life I feel I missed out on and to say there’s no jealousy there would be a lie so I completely understand when you say you find it hard to be around people who seem to have had a better life. I’m struggling myself to try and reclaim my life though I need help & advise on how to do that too!!! so just wanted to say your not alone. As for MRIs I have one every year and if you keep your eyes closed (over 25 and never looked lol)it’s noisy but absolutely fine.
Hi Emma,
hope you’re well. I feel its passed me by in multiple ways, I’ve never had the energy to do much and a lot can cause fatigue. Im kinda annoyed with the lack of help i get from others but as im going through therapy, im starting to get over the anger, its slow but worth it. I feel alone as ive spent the best part of a decade fighting for help, i officially give up and its time to have some sort of “life”.
Is it the fact you feel you’ve had less of a life as to why you’re struggling?
Ive had 3 mris so far, im pretty sure ive spotted black holes on my brain that might explain some of my mood and sexual issues, but dont trust my neurologist enough to ask him if its right… sigh
Pete