I am pondering my 9 year M.E. anniversary this week which has inspired me to post.
I've been away from blogging as I'm sure you've noticed. I think that the break has been good. In some ways there's just nothing new to say. I'm sick, it sucks, but there's nothing new.
There's lots going on in my life right now including my decision to attend a 4 week PhD course this summer (July) in Windsor, ON. It's not that I'm necessarily well enough. It's just that if I don't go this summer, I will need to do it next summer......and so on. I missed it last summer due to being relapsed. So I figure that the worst case scenario is that I end up laying in bed in a dorm room unable to attend. At least I will have tried.
I'm glad I'm going. I hope I'm able to pull it off. It's my final course of the PhD. If I manage it, then all I have left is my research (which is a lot, but easier to pace).
I have accommodations set up (basically the profs know I have an illness and that I may miss some classes or portions of classes). The next few weeks will involve doing as much prep for the course as I can.
I've been suffering some pretty ill, fluey days but also some better days. I have swollen glands (neck and armpits) again and some throat blisters. The days with the chest ache are worst. If I wake in the morning and it hurts to breath, I know it's going to be a rough day. I'm starting to wonder if the chest ache is actually swollen and/or painful lymphs in my chest? Just a thought.
The POTs (postural orthosatic tachycardia) comes and goes. I check it on and off (every few days I take my pulse resting then standing). I'm still dealing with plenty of dizziness mostly on standing - three blackouts today alone...but no complete faints. The blackouts are always if I'm trying to be a bit more active - like out in the garden pulling weeds.
Today my heart rates were 72 resting then after two minutes standing 116.
Later in the day 84 after 2 min standing 128. If nothing else, as the GP said, my heart is working hard just with the effort to stand - it's basically exerercise for me just to stand, crazy isn't it?
I'll post again on the 16th which is my M.E. anniversary.
have you not tried any medications for the POTS? I am having great success with Propranolol ...
ReplyDeleteSorry to hear you are still struggliing ~ I too have been taking time off my blog writing. Have not felt this way in years and never with my stomach. I had a friend today share here excitement because she could lift her arms long enough to braid her ponytail and could take her own bath once a week. This illness robs us all of so much. Wishing you well for your class this summer.
ReplyDeleteHi Lee lee. The problem is that I haven't been diagnosed and I haven't found a CFS friendly Dr. in the city where I live. Due to the way our medical system works, (Canada) it sometimes takes months to see a specialist and not all cariologists are POTS knowledgable anyways. I'm waiting to talk to my M.E./cfs Doc about it in August.
ReplyDeleteFor example, I was referred to a gastro Dr. in Feb and got a slip for June 13th. When I called a week a head of time to confirm, I found out it was June 13th 2012!!!!! I could travel to the U.S. and pay, but I don't have the money or the health to travel right now. Overall, I'm managing OK (I just have to be careful not to stand for more than a couple minutes.
Renee, sorry to hear you are also going through suc a rough patch still. I hope that changes soon. I've found the good weather has given me some good days here and there. If nothing else, I can lay out in the yard in my chair and enjoy the outdoors some days.