I haven't been well, but it hasn't been terrible either.
I HAVE been bored.
When I do an activity I crash or feel terrible. But at the same time, just laying around all day is driving me mad. Life is so bland. I've been trying to combat this with little online in-bed type projects. I've ordered some Christmas gifts, read, worked on my passport renewal application (for all those trips I dream of taking - yeah right!).
There are a lot of annoying symptoms plaguing me these days. I see little point in discussing them with anyone as firstly, it makes me sound like a hypochondriac (the symptoms are so wide ranging and plentiful) and secondly, I've had so little useful help from any medical professional I don't see the point.
So I thought I'd list them here just to give myself an outlet. But I will balance them by trying to think of some things that are positive in my life.
Annoying:
1. I have pressure/ throbbing in my right temple....sometimes worse than others but it drives me nuts. It sometimes hurts and seems to be connected to pressure in my ear as well. My guess is that it's a vascular thing, maybe even related to the OI....e.g. inflammation of a blood vessel? Does that happen? My NP thought maybe neuritis....I'm so sick of it.
2. My stomach issues are ongoing and almost constant. It's frustrating and uncomfortable in many ways. On the positive though, it's not as painful as it was for months there. The MRCP of my pancreas is happening in mid December. Hopefully it comes with some answers and solutions if that's possible.
3. My throat hurts esp. every night. A lot.
4. My muscles are weak and shaky and pathetic if I try to use them at all.
5. I feel fluey and sick most the time, but I look 'great'
6. My shoulders hurt a lot lately. I'm pretty sure this is arthritis from all my years of physical type work (chopping wood, canoeing, dog sledding, back packing etc.) rather than related to the M.E.
7. I am dreading Christmas with my dysfunctional and often unsupportive family. I have never managed that trip without a crash.
OK, well that's enough complaining I think.
What's good?:
1. I'm pretty happy with some art I've done this year, it's been a good year that way.
2. My dog is ever faithful and good company and entertainment. I'm so glad I'm not alone all day everyday as I convalesce.
3. You know, I'm pretty lucky to have a warm safe space to call home. I remember having no home or income for several years...it was rough on top of being sick...always being a "guest" with someone and constantly trying to figure out where to go next when each welcome was up. And I know people going through the disability process right now. Not only is it emotionally tough having to take stock of everything you are unable to do (everything you've lost), but it's a scary place to be financially as well. So I'm glad I don't have to face that again anytime soon.
4. I've been enjoying some short outings and super short walks without crashing which is something.
Nothing like the support of our "best friend" - wishing you better days and happy you can do short walks - esp for your love of the outdoors. xo h
ReplyDeleteYes, she really does help me cope. Do you have a dog buddy too? I forget.
Deletegood you didn't get crashed.
ReplyDeletedo you like to join the online discussion forums? i go blogcatalog often, lots of kind people there and i have lots fun. it is a forum for bloggers. you can post your blogs there.
Thanks for the ideas/options Yun Yi, I'll have to check that out. Hope you are doing OK these days?
DeleteI've started taking a few free online classes here and there at www.coursera.org (made by Stanford University) and www.udacity.com (also started by Stanford professors). Coursera has a crazy wide range of classes, and Udacity is more focused (I learned some basic programming from it! highly recommend it). It's a good way to do things , pick up some new skills possibly, even if all you can do is listen to lectures. It can be taxing mentally, but Udacity is self-paced, and Coursera can end up being self-paced since they archive the classes at the end. Khan Academy also has some cool classes I hear, all self-paced, on just about anything, but it's less organized I think.
ReplyDeleteThought you might enjoy, if you don't already :) Also, I don't mean to sound like a broken record or be pushy, but I would really consider getting that Lyme culture test. It's a bit expensive, but might end up being well worth saving up for. Being tested for Lyme and coming out negative on other, indirect tests, doesn't necessarily mean you're actually negative unfortunately =/. Sorry for the nosiness, hugs!!
DolceVita, I'm not sure how I'd go about finding a LLD here. Even acute lyme is pretty new to the area...I think there have been maybe 2 confirmed cases ever here. I am curious to get that test you mention.
DeleteI am actually a part-time PhD student so if I could manage a bit better I could work on that. I just took the last year and 1/2 (wow it goes fast) of medical leave hoping to improve. I'm doing another test run starting Jan. It's all working from home stuff and might be go for me again.
I wrote a post on how to get the Lyme culture test, in case you want to reference it: http://surviving-cfs.blogspot.com/2012/05/how-to-get-new-lyme-culture-test.html
DeleteIf you end up positive for Lyme, I'd be happy to share the treatment I'm undergoing and maybe your doc would be willing to prescribe what I've been taking? Don't know, but it's a thought! Let me know :)
Glad to hear you (re)discovered what was causing your stomach problems! Too bad it's another infection though...good luck with the treatment!
How great you have your companion with you at all times. I know our Levi certainly has blessed me when days were long and hard. It was fun to see a photo of you two!
ReplyDeleteThanks Renee, yes they are such a comfort eh? I actually sometimes take photos with my computer while I'm lying here bored. So I have a whole slew of pretty funny ones.
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