Thought I’d post an update on what’s been going on with me…
First, I just want to apologize I haven’t been participating much these past few weeks. I went into a bit of a “funk” I guess you could say. Just really frustrated, sad, angry, you name it and feeling a little lost.
In any event, I’m definitely in a better frame of mind . I think I just needed to go through the whole “woe is me” thing . It helps me to deal with all these emotions and feelings every once in awhile, allows me to re-group and move on ( until the next time, lol ) Such is life with a chronic condition…
Since I last wrote in September, my bad days have outnumbered my good ones.
I did try to add the Baclofen ( as my neuro suggested) to the existing dose of 1400mg Tegretol XR I’ve been on since August. Unfortunately this time around the Baclofen and I didn’t get along, so had to discontinue after 24hrs…
Neuro then recommended adding back the Dilantin, but I haven’t yet.
I do have a high pain threshold, and despite being a firm believer in not suffering needlessly, I’m wrestling with this decision to add back a second med.
In my mind it’s a step backwards AND more importantly by adding this med back into the mix it will limit my ability to function on my “good” days…and I’m not ready to give up that independence I only recently re-acquired.
Independance meaning being able to drive primarily.
Just by increasing the Tegretol over the summer I noticed my brain working slower again, it’s difficult to retrieve every day words while in conversation, I’m forgetful and even the short distances I do drive I’m on super alert concentration mode.
As you might understand, there’s a bit of a struggle going on inside of me and a reluctance to concede what to me are the very few things I can still do.
Ultimately the level and duration of the pain will decide.
The pain/bad days are still better than pre-MVD and for that I’m still so grateful.
My company’s long term disability insurance had me go for an assessment with a physiotherapist this week, I was hopeful that maybe this could help some…unfortunately the little bit of treadmill work I did set me off pain wise within 20 minutes from a 1/10 to a 4/10 with shocks and it gradually got worse throughout the day to a 9/10.
So very discouraging, I shouldn’t be surprised as any form of exercise this past year this has been the pattern for me. But my body misses and craves cardio that I let my hopes get high thinking maybe in this environment the result would be different…
In any event, on my good days I’m good and enjoy being able to do housework or pick up my kids from school/work, coffee with friends etc little pleasures I couldn’t do pre-MVD.
I don’t look too far ahead and try and focus on each day as it comes.
This month it will be two years since I had to stop working …back then I thought I’d only be missing a week…who knew . Makes me sad, I loved my job, and miss it. But life moves on and I’m fortunate to have long term disability through my work. Who knows, maybe one day I’ll be able to return.
In the meantime I still have HOPE for a brighter tomorrow.
Sheesh, I’m so long winded…if you made it this far, well thanks for reading my novel.
Hope this finds you all well, ((( hugs ))) Mimi xx