Hi everyone.
I was diagnosed the week before Christmas with R/R MS.
I’d had some mild symptoms at the start of 2012 which was put down to a back injury. In August I had some upsetting news and was very stressed out and then I got optic neuritis in September (just before I turned 30). A couple of MRIs and blood tests and MS was confirmed. Thankfully I didn’t need a lumbar puncture as the consultant was ok with basing diagnosis on my various relapses (I had another relapse in November - numb leg and arm) and MRI.
So I agreed with the consultant to start on Copaxone. I was given a prescription, picked up the medication the next day and started injecting daily. I met with the Copaxone nurse a week or so later and am arranging to meet with the MS nurse soon also.
Today I contacted the licencing authority and have to send in my licence to get the illness noted on it which made it seem very real. I’m just trying to get all the practicalities out of the way so that I can get on with life.
I’m a single mum to a 10 year old girl and I work full time so life can be hectic but I am trying to make more time for myself and relax more. Work is a bit of a struggle although they are very understanding and accomodating. But by Thursdays it’s harder and harder to get up and out and by Friday I’m praying for the weekend
I’m in a new relationship (about 10 months) so it’s been a massive thing to try and deal with when everything is still so new. He’s dealing with it really well and is a great support to me and we’re taking it as it comes for now.
There’s nobody in my family with it so it was a huge upset to my parents who are more devastated than I am I think!
So, that’s me and my sob story!
Glad to find a place to chat.
Hello and welcome to the site
Wow, Ireland is very different to the UK - getting a prescription so easily and then getting Copaxone the next day!!! It can take months here
You sound like you’re really on top of things, but don’t be surprised if it all creeps up on you one day - the whole diagnosis, meds, telling people, etc rollercoaster can play havoc with our emotions!
Do try and think of ways to make your working life easier. Maybe a change in hours? Different equipment? Do you know what the Irish laws are about disability discrimination? Is there something similar to the UK’s Equality Act which means that employers have to make “reasonable adjustments” for people with MS? It’s worth finding out about these sorts of things, just in case.
Anyway, welcome aboard
Karen x
Thanks for that Karen. Yeah I was a bit surprised at the ease of diagnosis. I’m not sure if it’s the same for everyone in Ireland. I’d say the consultant you have has a lot to do with it. He basically left it up to me as to whether I wanted to start meds. I did so he gave me the prescription, dropped it into the chemist and picked it up the next day.
Work have offered me the choice of reducing my hours if I’m not up to it but with a child to support, it’s not really possible at the moment. The benefits over here are all focussed on getting a person back to work so I’d have to give up work for 6 months before I’d be eligible to work part time and claim benefits for the other days. Bit stupid but there it is!
I might look into it a bit more in the next few weeks to see if there is any way around it.
But thanks for the warm welcome. I’ve had a couple of days as you described where it hit me like a tonne of bricks. It’s a hard one to take in because I don’t really feel all that different.
Hi meme. welcome aboard!
Just thinking about your work./income situation.
I know you would find it hard to manage, moneywise, but you do sound to be burning yourself out with work just now.
I know you say you are going to take a closer look at what`s what. but your life would physically be better, if you have more rest time.
Good news re the new fella, hope that continues and his support will be good for you.
keeping fingers crossed for you. love to the wee girl too.
luv Pollx
Thanks for that MS43.
I just think putting myself under financial pressure won’t help because all of my relapses have been stress related. I’m managing ok so far and in the near future I will definitely look at my options in terms of work.
As for the new fella, well, he’s a great support but I will admit the diagnosis has floored him. He’s really struggling with it. He wants to be with me but the future terrifies him and is causing some issues but I’m hoping it will pass once he can get to see that my life won’t be a constant round of hospitals and appointments and illness.
The last 3 months has been bedlam with so many trips to the hospital and he was with me all the way. But I think now that he has helped me through it, he is trying to come to terms with it himself.
I would think if the roles were reversed I would be having similar doubts and worries so I’m not going to hold it against him. I just hope it works out because I would be very upset if things didn’t work out with him.
However, I did it alone before for years and I can do it again. What will be, will be.