Got diagnosed 3 weeks ago, and feeling like my symptoms are getting worse slowly, Neurologist has said its RRMS but not due to see him till the end of July!!! And still waiting for treatment, though he did say it could take several weeks!!!
Fed up of feeling rubbish and ‘ill’ im normally fit and well and active, i love running around with my kids (5 & 12) but now all i keep saying is “mummy’s too tired” " mummy’s not feeling well" etc it sucks
Sorry about the rant especially as its my first post but not many friends/family understand
Unfortunately there is no ms nurse in my area, she retired and hasn’t been replaced ( looks like she wont be either!!) but the consultant runs an ms clinic once a month… just depends on if you can get on the list. ( spoke to his secretary just now)
so a little bit stuck really… and just got to wait to be contacted about when i get my medication
Have got fantastic family that can help, but they also work full time, luckily i can rest when the kids are at school.
Obviously I don’t know your symptoms or anything but in my own experience, I felt like total rubbish after diagnosis. For a couple of months I was struggling to drag myself out of bed or do anything. A few months on, looking back, I was putting it down to MS but I actually think it was more phsychological.
The diagnosis is a massive blow for someone to get and even though I was expecting it and coped well with it (or so I thought) I think it still had a profound impact on me. I think I was depressed and I just felt unable to deal with the world. I went to work and came home and went to bed. I felt physically exhausted and unable to have a conversation or cook or talk to my daughter. But I’d had none of that before I was diagnosed and none of it since so I really think it was the diagnosis as opposed to the disease.
Now, it could be totally different in your case but I just wouldn’t underestimate how the diagnosis would have affected you.
I’m diagnosed 4 months now and relapsing but still feeling well. It still can be a bit overwhelming sometimes but it does get easier wrapping your head around it.
I felt the same at diagnosis, part of it was emotional and part of it was my symptoms. I had had a nasty relapse which led to my diagnosis and it took a long while to recover from it. I began to think I would never get my legs working properly again. It took a while for me to realise that the more I rested, the quicker I would recover. Initially I wanted to carry on as I always had done and it was depressing to realise that I couldn’t. I was also angry at the whole world for no particular reason.
I contacted my local branch of the MS Society and felt much better after a chat with one of the members who told me that all MSers go through turbulent emotions at diagnosis. She told me it would all sink in eventually and it did; in fact I started to feel better emotionally straight after that conversation. All branches have a counsellor so you could try that or you could approach your GP and ask for some counselling. There is also the Helpline which you could ring when the children are at school for a confidential chat.
Then there is always this forum (when I discovered it I wished I had found it sooner). Feel free to rant on here as often as you need to and we will be here to support you.
I was diagnosed lat year. It’s a filtered word that begins with b. I found that vit B12, 500 mcg was a real tonic and that mindfulness was really helpful, https://itunes.apple.com/gb/album/mindfulness-meditations-mark/id429733506. The second one is really good. If you do try it, count to four on the inbreath/outbreath. Really good when you get into it. Haven’t done it for a while, so I will give it a go tonight. Hang in there, it does get easier.
It’s very early days. I was diagnosed in 2004 and remember feeling pretty rubbish also for the first few months however once I started coming to terms with things I started feeling better in myself. The symptoms were still there but slowly you learn to live with it. Life doesn’t stop,it does change slightly. I have progressed slightly, but this only happened recently, following a relapse that left me with a weak left leg. However yes I get a bit peed off but I have a three year old to lift my chin-up for and I will continue to do this. I have adapted things but you will see from my posts…they have gone from a little negative to achieving things I thought such as dancing albeit in flats but dancing nine the less. You will adapt hun, just take time to come to terms with things. I do Pilates and yoga and my aim is to strengthen that leg as much as possible. I am starting DMDs soon so hoping this may help. Keep your chin up but don’t be worried about how your feeling too much as it may be attributed to coming to terms with things aswell. . Positive thoughts and hugs xxx P.s these people on the forum are very helpful too. Adrian, how did you get into mindfulness? X