I've run the gambit only to have all the DMT's fail. Tysabri discontinued due to turning JCV+ at this point my doc and I decided, I am done and I'm okay with that. Trying to prepare for rebound effect and hoping my MS will be kind to my body.
I am lucky to have a great husband, daughter and sisters living nearby. I should be grateful, I know. When I talk to my sisters about symptoms or pain, they pity me or worse, tell me they know exactly how I feel because they stubbed a toe or some such thing. My daughter (29 yrs) looks like a deer caught in the headlights, she has probably researched this disease and it's outcomes as much as I have, so every twitch I do becomes worse case scenario and it scares her. My husband it probably the worst.
I recently had a viral infection and a flare, double whammy. When I got into a nightgown at 10 am, something that has never happened, my husband fainted and took out a wall of pictures, seriously. When I flare he has panic attacks. It has gotten to the point where I'm not telling anyone anything. If something is visible I minimize the pain, my own worries, fear and distress.
I walking a tightrope without a safety net and it really sucks. Thanks for the vent.
Peace,
Anna
I am lucky to have a great husband, daughter and sisters living nearby. I should be grateful, I know. When I talk to my sisters about symptoms or pain, they pity me or worse, tell me they know exactly how I feel because they stubbed a toe or some such thing. My daughter (29 yrs) looks like a deer caught in the headlights, she has probably researched this disease and it's outcomes as much as I have, so every twitch I do becomes worse case scenario and it scares her. My husband it probably the worst.
I recently had a viral infection and a flare, double whammy. When I got into a nightgown at 10 am, something that has never happened, my husband fainted and took out a wall of pictures, seriously. When I flare he has panic attacks. It has gotten to the point where I'm not telling anyone anything. If something is visible I minimize the pain, my own worries, fear and distress.
I walking a tightrope without a safety net and it really sucks. Thanks for the vent.
Peace,
Anna
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