The past year or two my CFS/ME has been strange (by strange i mean different to how i hear it affecting others). Most of the time i can be completely symptom free if i avoid physical activities eg just sit in a chair all day and dont move except type.
When i do start to over do things.. the symptoms start to kick in REAL FAST eg dizziness in which if i continue doing whatever.. i'll start getting a headache or like a feel of brain swelling? five minutes later.. and if i dont stop at that point.. 5-10 mins later i may be almost throwing up... and so on. So i can go from being completely fine and feeling healthy (which is unusual to most with CFS/ME).. to sick and almost vomiting in about 20 mins. So i usually stop doing things as soon as the CFS/ME starts kicking in.
Today i went to government meeting and other then feeling a healthy kind of tired (not a CFS/ME tired, there is a HUGE difference!.. i was just tired as i had insomia last night so only got 3 hrs sleep), i felt tired but great.
But after 1.5 hrs of sitting in chair at meeting at which point I was starting to feel weak, I suddenly then nearly had a seizure coming out of the blue so suddenly, it shocked me to have it happen. (This happened without feeling any exhaustion).
My body started uncontrollably jerking and spasming.. (if i had been standing it probably would of looked like an epiletic seizure as it probably would of dropped me, this has happened in the past)
Its a bit of of worry to see my neuro symptom kick in so strongly and suddenly!! without much warning at all only some slight weakness (enough for me to be slouched in chair and leaning my head.. but it really wasnt too bad at all.. i was quite happy as my body was comfortable slouching and hence having my weakness supported some).
I wonder why my case of CFS/ME can go from feeling great and being like well.. to a complete neurological disaster so fast (i thought they were going to have to ring an ambulance) .. but then can also come good just as fast. I used to have typical CFS/ME and used to take ages/days/weeks or whatever to recover, if a crash to cause that severe symptom happened. But now 15 mins after the near seizure.. i was feeling great again and could even walk the distance to the car which was on another road (thou like a normal persons tired).
That XMRV or those MLV's must really mutate a lot as this is so different to how the ME used to be.
When i do start to over do things.. the symptoms start to kick in REAL FAST eg dizziness in which if i continue doing whatever.. i'll start getting a headache or like a feel of brain swelling? five minutes later.. and if i dont stop at that point.. 5-10 mins later i may be almost throwing up... and so on. So i can go from being completely fine and feeling healthy (which is unusual to most with CFS/ME).. to sick and almost vomiting in about 20 mins. So i usually stop doing things as soon as the CFS/ME starts kicking in.
Today i went to government meeting and other then feeling a healthy kind of tired (not a CFS/ME tired, there is a HUGE difference!.. i was just tired as i had insomia last night so only got 3 hrs sleep), i felt tired but great.
But after 1.5 hrs of sitting in chair at meeting at which point I was starting to feel weak, I suddenly then nearly had a seizure coming out of the blue so suddenly, it shocked me to have it happen. (This happened without feeling any exhaustion).
My body started uncontrollably jerking and spasming.. (if i had been standing it probably would of looked like an epiletic seizure as it probably would of dropped me, this has happened in the past)
Its a bit of of worry to see my neuro symptom kick in so strongly and suddenly!! without much warning at all only some slight weakness (enough for me to be slouched in chair and leaning my head.. but it really wasnt too bad at all.. i was quite happy as my body was comfortable slouching and hence having my weakness supported some).
I wonder why my case of CFS/ME can go from feeling great and being like well.. to a complete neurological disaster so fast (i thought they were going to have to ring an ambulance) .. but then can also come good just as fast. I used to have typical CFS/ME and used to take ages/days/weeks or whatever to recover, if a crash to cause that severe symptom happened. But now 15 mins after the near seizure.. i was feeling great again and could even walk the distance to the car which was on another road (thou like a normal persons tired).
That XMRV or those MLV's must really mutate a lot as this is so different to how the ME used to be.