I am new to the forum but thought it might be good to speak to people going through the same issues.
I am a 41 year old female was officially diagnosed with highly active RRMS in May after having at least 3 relapses in a year and am currently having Tysabri every 28 days. Am 2 treatments in.
I had double vision 12 years ago and was told it was a lazy eye muscle and had a bad back in 2018 where I couldn’t move, had an MRI and some physio and it’s been better ish. Now after review it seems there are 5 lesions on my spine as well as well as “multiple” on my brain.
Most of the time I accept what I have and can deal with the pain and numbness and just crack on but sometimes I am just tired of feeling rubbish and something aching and being judged by others because I am just so tired. On the plus side, I am pleased I know why I am so tired and why my body hurts! Catch 22 I guess
You’re in good company here - we’re all knackered and falling to bits, s l o w l y ! Feel free to unload
Getting an MS diagnosis can take a while and as you’ve discovered, can be ignored or misdiagnosed for years. I’m in the same boat: first episode 2003, misdiagnosed for the last 10 years and in reality, fairly rapid progressive MS for the last 5 years. And yet I was diagnosed at the start of this year…
It’s a balance: keep fighting it, by being the best you can possibly be, whilst acknowledging it’s there and will be dragging you down steadily. We all do our best!
One of the few benefits of being older than you is that I no longer give a flying “fig” if others judge me.
I do understand the notion of being tired of being unwell, the only answer for me is either a small rant or distract myself looking at nice stuff.
Hope you feel a bit better soon
Welcome to the forum. I know for many years you’d never have wanted a welcome somewhere like this, but truly, your reaction to diagnosis is very healthy.
Being generally miffed at how cr@p MS is and yet glad you are now diagnosed and on a great DMD like Tysabri is definitely a good attitude.
It sounds like you are suffering fatigue. Many/most of us do. The only real answer to dealing with it is fatigue management. Have a look at Fatigue | MS Trust
I’m in the same gang as Mick in that being older, I don’t give a flying fig what anyone thinks of me either. It’s certainly a comfortable state of mind to attain. Being able to say ‘stuff it’ to whatever people might think is really rather nice.
Thanks for the messages it’s nice to feel welcomed and read other people’s management of MS. I will stop caring what others think at some point I am sure. I am just not good at looking after myself and realising I need to stop!
i am also a newbie. I was diagnosed with RRMS in 2007. I suppose a ‘prime age’, i was 23. Up and downs ever since, more ups than downs from the outside, but other way mentally. MS is difficult, and i think telling people without physical backup, they use to think i was a hypocrondiac (probably spelt that wrong lol). Having MS has given me a different look to life for the best. Since being diagnosed, i lost weight, quit smoking, got married to my angel, have 3 step kids, 2 of my own boys. Life is a challenge and having MS thrown in, is like having a new set of rails to go on in your rollercoaster ride of life (getting too deep here lol).
I see me MS as a challenge, it is horrible but it has changed me for the best.
Hi Stef I agree, in some instances MS has changed me for the better and helped me realise what is important…. My husband… my boy… sadly I needed that, as we all do as humans… (I still forget sometimes though )
Chris - I looked at Ocrevus as well and it really was a toss up. One of those times you want someone to decide for you good luck and let me know how you get on
Welcome to join the mssociety community.