I am 61 years of age and have JME since 14, over 400 seizures, and born with a deformed chest, left breast about 1 1/2 higher at the sternum than the right, over the lungs, which does affect my general breathing. In February of this year I fell off an exercise bike while having a seizure, I hit a table right beside this, under my right arm. I broke a rib which in turn fractured three ribs on my deformed sternum and in turn a rib on my left hand side, all in line on my chest. Due to my deformed chest I could never really sleep on my back or left hand side anyhow. The point of impact on my left hand rib can never really heal but the other ones although partly healed are still sore and now severely restrict my general breathing. As my friend my chiropractor remarked "over the years, you have broken or fractured every rib in your body" which incidently my GP also agrees with, but this exercise bike episode has proved to be my final 'straw' I now cannot sleep at all! Subsequent seizures have not really helped the process! I could do with a chest of 'steel' now as former rib breaks [or prolapsed discs] that happened years or decades ago can twinge even now? New ribs?
I have a black sense of humour which in my present state I really need, I have NF2, [which can be terminal] (three separate operations on fibro-neuromas) but even this I am being currently tested on by various Neuro-specialists in this field [since March] to see whether I have a more obscure strain than this? Maybe have this new strain named after me?
I have been writing for the last eight years on the history of 'Burke and Hare' who murdered 16 people and then sold their bodies off for anatomical research, currently being proofread, typical of my dark humour. My sister is forming an appeal for PIP at the moment, quite frankly now being quite irrelevant in my present condition. Ironically last week I paid off my last payment for my house so finance not really an important issue.
Merry Christmas Everyone!
Written by
Adlon57
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Judging from your racy writing style your book on Burke and Hare should be a jolly romp through this fiercesome sybject.
Nothing to contribute on your health problems, but best wishes for your writing career. I suggest you start a darkly comic novel to help fill your sleepless nights. I'd love to read it.
Nothing like a dark sense of humour, I think Eric Idle [Monty Python] got it wrong "Always look on the BRIGHT side of life!" In any case a wicked sense of irony to keep the 'pecker' up! Not a lot can be done now about my health matters? The factual book should be out sometime next year, LoisParker nice idea about the "darkly comic novel"! Compliments of the season to all!
I can see you are a strong willed and a fighter at heart. I suggest you do bodyweight exercises in which you use only your own bodys weight to be fit. Make sure you do a gradual warmup for 10minutes before any workout. yoga will help but please workout with a trained instructor.
Thanks for the suggestion Kensgym, considering I cannot sleep on my back, and cannot use yoga positions, [I have tried] I have got a bad record of re-fracturing ribs whilst in bed. Even my chiropractor [a good friend] has 'given' up with me! Although some restricted walking does help my general health? I am a bit wary of my new epilepsy medication at present, Vimpat, trying to adjust to it's various side-effects!
Re Vimpat s/e. I’m sure your Doc is managing the medication. Make sure it’s not interacting with any other meds like phenytoin or Clonazepam. Dose may need to be monitored. Talk with Doc.
Re humour as the best medicine. How’s the dark comic novel coming along?
Just had a double seizure? [coming off Lamictal after at least 6 years?] but now aware of different auras, thanks for the tips about Clonazepam Explore584 which just been dealt with in very small doses until up to full measure of Vimpat, will ask about this before actual using! Getting near to full dosage of Vimpat now in a couple of days, and now aware of limitations of auras might not even use Clonazepam?
Always keep the pecker up!
Detail of drugs and strength should always be monitored. Ask your Doc re Clonazepam. Everyone is different in their own variable environment too so personalise the experience with Doc.
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