I’ve been a member for a few years now but this is my first post, a little background info about myself, i was diagnosed in March 2009 and had four relapses that year so quickly went on Rebif which i didnt get on with so i gave Tysabri a go which worked really well for me and i was on it for 3 years, i have had the last year drug free apart from pain killers and things are getting worse so i’m going to give Gilenya a try.
So back to the question, I’ve been having a rough few days and just got wondering how everyone else copes with the rubbish days?
I personally always listen to music when i am having a rough time and i think it gives me something to think about and listen to which takes my mind off the pain.
I use heat pads for the really painful areas and just vegitate either with an old paperback or tv. Sometimes I climb into a sleeping bag with a heat pad - depends how bad things are. Pregabalin has been a great help and my body is no longer wired all the time so I manage to sleep without the bed shaking or kicking out. I have to use a bed cradle to keep the bedding off my feet.
Sometimes I telephone a friend for a chat usually about anything except MS. I have been injecting Rebif for 10 years and unsure if this is useful now as I am now SP and my skin is getting tough.
Ask for a referal to the pain clinic in your area.
Failing everything else a good curse sometimes helps to releive the tension. I find staying relaxed is better for me as it helps with keeping the pain down.
i have been diagnosed a while now. on the bad days i somehow manage to get downstairs via my stairlift. by the time i reach the bottom the nausea and dizziness are almost unbearable-the profuse sweating then starts. i get to the loo and rest my head on the coolness of the sink… by this time the kids are aware of whats happening and bring me a glass of water. they leave me alone as there nowt else they can do! an hour later i manage to the couch-usually with their help-and i stay there for the rest of the day. i cant focus on tv and or get to the radio SO i have learnt to use what i do have access to-my mind! meditation-as others have said.
BUT on a good day get downstairs on stairlift, watch the kids go to school, get ready for carer to come and then do what i can! that may be going on the bus with powerchair and carer or giving instruction to them what i want them to prepare for the slow cooker, or catching up with friends on the phone.
life is good and should be lived! some days are more challenging than others but every day counts
On a really bad day I stay in bed until my legs are willing to work. I watch catch up TV on my laptop, sleep lots, read a book and do some puzzle books.
I also do some yoga stretches - no pain, no gain! Usually my muscles are very tight and some stretches help. Sometimes it takes a few painkillers before I can attempt these but that’s on a really bad day.
Take care
Tracey x
PS Been on Gilenya for 2 weeks tomorrow and so far so good
On a bad day I would love to hide under the duvet but for me bad days are the same as good days and I just have to get on with it looking after the kids and working from home etc, its exhausting but a good distraction.
Hi, if poss, cut the bad day short by going to bed early, taking with you a sack of chocolate (or whatever crap fodder you prefer) and just flick thru the tv channels and watch what you want or just go to sleep…but dont lie on the choc and melt it…or you may wake up to think your bowels are also having a bad day!
ride it out hun, another day will dawn and who knows, it just might be a good `un!
I’m another one to be an advocate for mindfulness meditation. Deep breathing exercises are good too. Whenever I do either of them it always surprises me just how much tension I’ve been carrying in my body, and when I do them it’s like putting down some heavy bags. And I journal as well, which is good to get out how I’m feeling instead of having it churn round my head.
Getting in touch with nature does me wonders too, even if it’s just looking at the clouds our of the window. Listening to birdsong is always nice too (I use the birdsong.fm website).
And just to chip in my own music recommendation, ‘She’ by Laura Mvula always gets me.
