Sorry I have been so inattentive to this blog. While I've been working since April preparing my course (and the "work" I did on my PhD was also work), I am now officially an instructor and a part-time "working woman", and it is taking a lot out of me.
It is incredibly time consuming, sucking all my energy. I am having symptoms of brain fog which I haven't had in almost 10 years so I know I am near/over my limit. On the other hand, it is about the most perfect job I could find given my abilities and circumstances (flexible schedule online from bed), so I hope I can manage the next 5 weeks.
It is clear to me just after almost two weeks into the course, that I will never work close to full time again in my life time. No amount of will power can overcome all the symptoms and limitations of this GD illness. After 14 years, it's pretty obvious that nothing's going to change much, none of these illness related problems are going to magically disappear. And as my friend with M.E. said, the only hope for us really is "some miracle cure". Realistically it would take a miracle. This likely means that on some level, I may have to be on "disability" indefinitely to survive. This makes me super sad.
On another topic, due to blackouts (which I'm sure are just POTS) and some weird visual symptoms, I agreed to a brain/head MRI. I've never had one, so I guess I might as well, however, I only agreed to it on the condition that I didn't have to see a neurologist. The last thing I need in my life is to wait a year to see another dismissive or arrogant specialist (this is my experience with 4 of 5 I've seen).
I've been enjoying summer a lot despite the much worsened POTS. Sitting outside, tinkering in my gardens, being warm.
Congratulations !!!!! I know for myself any little positive accomplishment it is often hard not to have it clouded by …"but I use to…" Good luck with the MRI…maybe will give some information - I've always debated but I'm like you - a little bit of why …keeping you in my thoughts xo H
ReplyDeleteI'll let you know what they find hkd, however, I think with most ME people they don't see much with the traditional MRI. In this case I think they are looking at the blood vessels especially because of what they call hmmm something migraine, oh yes "ocular migraine" I think. It's when you get the aura and blackout (I get a complete black-out blindness on occasion) without the headache...
DeleteHey, long time no write. I'm happy to see that you're making some progress and "working," but I know exactly what you mean by it sapping every ounce of your energy. This happened to me when I tried to get back to grad school and was teaching at the same time (had to teach for the scholarship). I'm still recovering and that was years ago, so be careful. Don't literally go until you drop! Also, wouldn't a neurologist be a good thing so long as they're versed in POTS? I was finally told that a neuro would be better than a cardio for POTS. And what do you know? All of a sudden I found two neuros who deal w POTS out of nowhere! Crazy. I've had it 20+ years and then all of a sudden, people who treat! Not that I've gone yet lol I'm about done w being talked to like an imbecile too, so I'm taking a break. It's nice to see you writing. I hope your pups are well. Take care, jenji
ReplyDeleteNice to hear from you Jenji. No doubt teaching and schooling would be overwhelming.
DeleteI couldn't manage both, but was lucky to get a grant while I PhD-ed that paid tuition. Working even from home is less flexible that that was, though...and courses are always WAY harder the first time round. Will be interesting to see if I can do this more than once.
Hi Upnorth, I think I've figured out how to do the comments. My onset of ME was gradual and one initial symptom was running out of energy when I talked too much, talked excitedly or did just minimal exercises for my back, then slowly escalated over the years, now it's been almost 20 years, though in the early years I could manage to travel, not now. I do have benign positional vertigo (the word paradox something or other is in there too, too beat to look up the spelling). In your last post you mentioned getting faint when bending over in the garden so I was sort of connecting what I have. Onto fun stuff ---I'm growing two jasmine vines this year and finally I've new shoots on both plants. Having meaningful work (or for me meaningful projects) really does enhance our beleaguered lives. So glad you have the near perfect teaching position considering the ME. From Leah
ReplyDeleteOh that's really interesting Leah, that actually sounds similar to what I get, although with the POTS maybe more light headed, and the times I faint it's pretty much lean over or squat to pick out a weed, stand back up, wham, black out, I'm laying in the grass wondering....
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