stressed about stress.
Even though my diagnosis was almost eight months ago now, I am more scared now than I have been in all that time. In the last two months, my husband left me (saying it has nothing to do with the dx, we'd had problems for years, blah blah, all of which is true but I had no idea it was coming, we were talking about getting pregnant the week before and just came back from a holiday) and his leaving has brought a lot of emotions and new stress to the forefront. I am pretty asymptomatic as it is, I tend to get pins and needles in my hands in the middle of the night, and a bit of l'hermittes sign at the moment, but my latest MRI showed a bunch of new lesions, which really surprised me and freaked me out. I haven't started the DMDs yet since I was planning on getting pregnant, and now I'm scheduled to start in a few weeks when I'm back from a work trip. I'm scared of starting copaxone and I'm scared of not starting it. I'm worried I've left it too long and also that I haven't made enough of an effort with alternative diet and exercise treatments with no DMDs... Seems whatever choice I make--or avoid--I feel like it's wrong. I'm just so scared that I have all these lesions on my c-spine and that means maybe the disease will progress faster. I know stress is bad for the prognosis but I can't seem to calm down. I started taking some SSRIs in the meantime for anxiety and depression but that too I feel ambivalent about. All my family and friends tell me I will be fine, I am so healthy, I seem fine, but I am just so scared of what the future holds, especially going it alone. How do you get comfortable living with so much uncertainty? I don't know what I can accomplish with this note, I guess I am just looking for some feedback from people who've been through similarly tough times. Thanks for listening.
I'm not surprised you're stressed! Who wouldn't be - even without MS? You're living with the pain of the recent past and the worry of an uncertain future. It would freak anyone out. It's no help people telling you that you'll be fine. They're not you. I think all you can do is to think of 'the next stage' which I would put as 'being the best you can' - i.e. successfully managing your MS. We all need loads of support and probably the best support around will be from your medical team. Once you start on Copaxone, you'll be attending follow-up clinics where the nurses will be really looking in detail at what's going on. With any luck, the DMT will calm everything down and you'll be able to see the woods from the trees. In my experience, uncertainty feeds on isolation and lack of information. It's much easier to feel in control yourself when you know there's someone who can answer questions and give you some time. So, if it's any consolation, you're doing exactly the right thing by starting treatment and it should signal that the worst moments have passed. Keep us in the loop, lots of love, xx
PS I should have added: I was dxd in December (2003) and didn't start Copaxone till July 2004. My neuro (Prof G) said he didn't want me on treatment till my mental state had calmed. So no, you have't waited too long to start your DMT.