Not a Perky post (Cussing involved too)
So another day. Still anticipating CCSVI but my optimism has been tempered by seeing more and more reports of people who have to go for further treatments when their veins close up. Not that I didn't know that was a option just didn't know the percentage was so high. I'm worn out. My symptoms are really bad- In fact the worst they have been in 6 years. I'm likely going to get a walker before the week is out and half my face is now effected. If I get courageous I will post a picture but I'm not sure that will happen. I've been thinking I need to do a video and document how I am when sick to show my neurologist what my MS really looks like! I am rarely sick like this when I have an appointment with a neruo so they always tell me how 'mild' my MS is and how grateful I should be that it's not worse. Pardon me but Fuck you for telling me to feel grateful for not being worse! Do something to help me instead! Start some testing in Canada. Let the vein specialists check out some MS patients- you don't own me or my symptoms and there needs to be some changes made to the way we view health in this country.
I worry about staying like this forever and I'm constantly losing myself to fears about my future and what that will mean for Aidan. My poor little bundle of energy is obviously disturbed by my illness and inability to play with him as I always have, I have started feeling guilty all the time and have been fighting the urge to buy things to make Aidan happy! GAH and ARG!!
I've taken a leave from work mostly because I was falling and really have hurt myself and haven't been taking the time I need to rest. Thank God for my mom who has agreed to help with Aidan as much as she is able. I'm not sure where I would be without her.
2 weeks on Thursday until treatment- Fuck I hope it works! I just want to be myself again! I'm really missing going for walks and coffee and taking Aidan to the park. I was always grateful for not being worse but I think my gratitude will surely double when this shitty feeling lets up. I thought it was the other day but it was just the beginning of it worsening again. So symptoms list- ostensibly for myself and my neuro- please feel free to skip if it's boring or whiny: muscle spasms right side worse than left (but both) (includes restless leg), muscle spasticity- inability to walk without looking like a handy capable robot! (no co-ordination and my legs not taking direction), Right side of my face is a scowl - muscle spasms pulling my mouth and nose upwards and partly closing my eye (really hot- eye roll), Left hand numb to the point of being mostly useless, lower half of my body numb and feels like I'm sitting in a bucket of ice water, upper half -especially right side feels like I'm on fire, Head tilts without my knowledge- not sure where center is unless I look in a mirror, balance totally gone (turn out the lights and I'm fucked!), fatigue as always still there but now more worn out just doing nothing than I was before, mental clarity- not good at holding a thought but did manage to do our taxes myself (after a rest).
That's about it for the moment hopefully I will have some optimistic things to post soon and may branch out into a pre-CCSVI video so I can do a post treatment video also.
Thanks for reading. Prayers gratefully accepted.
xoxo M
I worry about staying like this forever and I'm constantly losing myself to fears about my future and what that will mean for Aidan. My poor little bundle of energy is obviously disturbed by my illness and inability to play with him as I always have, I have started feeling guilty all the time and have been fighting the urge to buy things to make Aidan happy! GAH and ARG!!
I've taken a leave from work mostly because I was falling and really have hurt myself and haven't been taking the time I need to rest. Thank God for my mom who has agreed to help with Aidan as much as she is able. I'm not sure where I would be without her.
2 weeks on Thursday until treatment- Fuck I hope it works! I just want to be myself again! I'm really missing going for walks and coffee and taking Aidan to the park. I was always grateful for not being worse but I think my gratitude will surely double when this shitty feeling lets up. I thought it was the other day but it was just the beginning of it worsening again. So symptoms list- ostensibly for myself and my neuro- please feel free to skip if it's boring or whiny: muscle spasms right side worse than left (but both) (includes restless leg), muscle spasticity- inability to walk without looking like a handy capable robot! (no co-ordination and my legs not taking direction), Right side of my face is a scowl - muscle spasms pulling my mouth and nose upwards and partly closing my eye (really hot- eye roll), Left hand numb to the point of being mostly useless, lower half of my body numb and feels like I'm sitting in a bucket of ice water, upper half -especially right side feels like I'm on fire, Head tilts without my knowledge- not sure where center is unless I look in a mirror, balance totally gone (turn out the lights and I'm fucked!), fatigue as always still there but now more worn out just doing nothing than I was before, mental clarity- not good at holding a thought but did manage to do our taxes myself (after a rest).
That's about it for the moment hopefully I will have some optimistic things to post soon and may branch out into a pre-CCSVI video so I can do a post treatment video also.
Thanks for reading. Prayers gratefully accepted.
xoxo M
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