Hi all!
I am currently using copaxone 3x a week as a dmt but have found myself slipping and avoiding doing my jabs at times. Im 26 years old and finishing my PhD at the moment so under a lot of stress and definitely using that as an excuse . My partner tries his hardest to get me to take my treatment but doesnt like to feel like hes forcing me. I set alarms for the days im due to do it but often find myself making excuses. Any advice? Or possibly anyone who needs an accountability buddy to check in with each other and make sure we’re on track? Thanks guys!
Hi
I am on Brabio (copaxone), what is your main problem taking the injection? Does it hurt? You forget etc?
I take it Mon, Wed, Fri first thing when I get up.
I don’t use the auto-injector now because I find it better just to do it manually.
happy to have a chat
There’s something about wanting to wrestle back some personal agency, isn’t there? When the world seems intent on doing outrageous things to you: giving you MS, telling you to stick needles in yourself et cetera? Of course, what we really want to do is to decline MS. But that menu option isn’t available. But we can decline (or not be regular about)
treatment, dammit! You can see where I’m going with this can’t you and I’m not saying anything that you don’t know perfectly well already.
By the way, I remember that feeling from my years on Avonex. There were so many times when I thought oh dammit, I just can’t be bothered with this. So I do know my own version of what that feels like.
In fact, there is lots that you can do to take back control of the steering wheel and do things to keep you as well as you can be for as long as you can be. Treatment is one of them, obviously, but there are others diet exercise, good sleep stress management all that. There’s lots that you can do that will actually help, but it can be very hard to see clearly sometimes. Please be gentle with yourself, and accept that you are having a very difficult time. This is not your fault. You’ll be OK. But please do yourself favour and get back on track with the jabs.
I was on an injectable for about 15 years and I absolutely understand that feeling you have. Just can’t face it today…. However, on the other hand I was terrified to stop in case of a relapse that would take me off my feet for weeks at a time. This had happened so it wasn’t a difficult decision to keep going.
I have since changed to a tablet version of a DMT (Tecfidera) which is much easier. No more needles. Could that be an option for you maybe?
Good luck with the PhD!
Hi there. Sticking a needle into me goes completely against instincts about protecting myself from any pain and knowing that the next day I’m very likely to feel a bit ‘grot’ makes it seem even more ‘against the grain’. However , just to pick up on things that Alison100 has said and which I think are insightful: One moment you are happily getting on with life and its ups and downs and imagining or assuming a happy future. Then, ‘bang’ you have a diagnosis of MS, a condition that we have very limited control over. Suddenly life is full of uncertainty , of appointments with MS Nurses and consultants, and being told to self inject some treatment or another. It’s an awful lot to take in and to adjust to - life doesn’t seem real, feels scary and out of our control, too big to deal with. In my case and rather than try to block out some of it I decided to find out as much as I could about MS and how to deal with it. Amongst other things I found a book ( and associated website) ‘Overcoming MS’. It doesn’t offer any ‘miracle cure’ but suggest the sort of things that Alison indicates- diet, meditation , exercise and anything that , in addition to a DMT can help mind and body overcome at least some of the effects of MS. I try to follow the various recommendations and if nothing else it gives a feeling of having some control over my future ( plus giving me a healthy diet and lifestyle)- A feeling that I’m doing things , including my injections, for me and not just because the medics tell me I should.
It was perhaps relatively easy for me- my Aunt had MS in the days before DMTs and I saw just what MS could do to a person, how badly it could affect someone’s life. For me it was an easy choice - do everything I could including sticking to injection routines or face a future like my Aunt’s.
So to echo Alison - please do stay on track with your injection routine! Don’t risk your future health and happiness ( sorry if that sounds a bit blunt but for time being, once the MS has damaged your brain and spinal chord that’s it - there is no reversing it ). And perhaps set aside some times for meditation, mindfulness , calming the mind and body or whatever to ease the stress . Stress is definitely , definitely bad for MS - tends to inflame the immune system!
I do wish you all the best for your health and writing up the PhD ( a long time ago - i.e in the days of typewriters and LetraSet but I do remember the mixture of anxiety and excitement of writing up and the forthcoming Viva Voce - if that’s what the oral exam is still called ).