Ah thank you all guys for lovely welcome, i am finally HOME. I said to my neurologist its not having a place to go and just socialise with other people that hurts so much too. I got so fed up with my family never taking me seriously.
I mean when you get a wedding invitation and you know you cant attend you are made to feel so guilty. Its why cant you travel an hour to see your niece get married. Well because it just isnt the hour there, its the 3 hours in between and the hour back, which puts you down for nearly a week in excruitiating nerve pain, like one other said above like having massive toothache in your legs all day and the fatigue so bad you just want to cry with it. Thats why i dont want to go, not because I am being awkward. They dont get it.
Sadly i have to face a terrible day tomorrow my mums funeral, i cant really talk about it, as it hurts too much, but i know that is going to wipe me out for weeks, BUT I am going to read her a poem i am determined to do it. She knew, she was always so good with me. Its my siblings who seem to just ignore the fact. I got the diagnosis right in the middle of the funeral arrangements I wonder if god is having a laugh at my expense…
I have always gotten DLA even without a diagnoses indefinitely, my DLA doctor told me way back in 2008 she was positive then i had MS, and could see a pale disc in the back of my eye. She was right all along lol.
I have mobility scooters, as i take my dog out for a walk, i live right opposite a large park, so we can go out together and i get fresh air. It was only 2 years ago i could walk out with stick, now i try with rollator and struggle to walk just up the outside path and back. I cant believe how it makes me feel, like i am walking in concrete and my stupid left leg is just dragging itself lol.
The neurologist has tried me on the meds, i think i am going through the alphabet lol. I have tried amytript, gapapentin, some other obnoxious thing, and now a new medication called DULOXETINE / Cymbalta. Besides the stuff i take for my weird epilpesy thing, Diazepam 2mg for the spasms at night, and Propanonol for my blood pressure…
So can I get an MS nurse then? I thought perhaps they were only for younger people with RRMS dont know why i have that in my head. My neuro is sending me to the pain clinic for assessment for pain management but i expect that will take several months. Its daft though isnt it, as prior to diagnosis i was coping with the pain for years on my own, now i can get all this attention from specialists lol.
I have a good report with my nurse in our practice for my urinary issues which are dire. I read somewhere that is an issue with PPMS too.
I do keep happy and have always got loads of friends on the Internet and some we talk on phone now too.
Thank you so much for your warm welcomes it really helps to know finally people understand me. xxxxxxx