Christmas Blues

Christmas is hard time for lots of people, myself included.

For me, it's a reminder how alone I am in the world.  I have very very few friends here partly due to my health and having to remain mostly homebound. I have my dad and love him, although most the time I feel like the love is a perpetual one way street.  It's a similar situation with two of my brothers who live across the province - I can love them, but due to their disabilities, they don't really seem to have the ability to 'love' anyone in return.  And as most of you know, I really haven't dated at all since becoming ill in my early 30s, so there is no partner in my life, and no children, and likely there never will be.

Also, in the last two years I lost my mom and my closest Aunt (in August). I realise it's completely selfish, but sometimes I feel like these two women were the only people left in the world who really loved me.  On the one hand, this makes me realise how lucky I was. On the other hand, sometimes since they died I feel adrift in the world, like without their maternal love I've lost my anchor - yes, even at my age.

Back to the holidays, given it's a time when people get together with friends and family, it makes me feel my lack thereof. While my father appreciates some celebrating I would have to make it all happen myself as he is unable (whether that's cooking, decorating, gifts, whatever). Then there's the fact I'm ill/weak/colossally fatigued not to mention there is no one here outside of my dad to celebrate with.  My roommate is not very keen on the festive aspects of holidays, works a lot this time of year, and I don't want to force my dad on her.

My energy is pretty low right now and the POTs is bad (I am having a really hard time tolerating standing) - I just don't have it in me to make much happen on my own. That said, I love some of these things, they are worth the crash - cooking, baking, decorating, lights, etc. but it feels pointless to do them when there's no one to do them for but me.

Can you tell I feel blue?  I was watching Simpson's the other night and they were making fun of people who read a certain series of popular children's books (which I do) and I think the line was "adults whose lives are lonely and pathetic". Sums me up to a T. Hopefully my black mood doesn't ruin the holidays for anyone around me (e.g. the dog) - I guess that's one good thing about being alone a lot.

Orthostatic Intolerance - tilt table results.

Well I finally (7 mo after the test) got my OI tilt table results.  It's interesting because the specialist wrote the report like he'd seen me and I actually never even met him.  Perhaps he went off the notes that the technicians wrote?

Not surprisingly, I was positive for POTS - "the patient had a positive tilt table test response for postural orthostatic tachycardia syndrome with severe orthostatic intolerance".  They also did what's called a catecholamine level and a beta adrenergic hypersensitivity test both which were normal.  The report about my symptoms during the test was mostly accurate however there was no mention of my excessive sweating (perhaps this is normal for someone with POTS and not worth mentioning).

Recommendations - nothing new - increase salt and water, drugs (Florinef or midodrine and a Beta Blocker) all of which I've tried unfortunately.  Since I wasn't able to speak with him I wasn't able to explore other drug options/ideas which was one of the main reasons I went. I'd would have also really liked to have asked someone about my bouts of extreme air hunger/breathlessness - sigh.

He also mentioned in the report that I should enroll in an exercise program (he obviously doesn't get M.E. and exercise intolerance) as well as CBT.  I was unaware that CBT was a treatment for POTS, not sure how one would think themselves out of tachycardia when the cause is positioning/being upright?  As it is, I force myself to be upright until I have a blackout/vision loss, tremors/shakes, extreme weakness, and my feet turn purple and hurt, on almost a daily basis. I also exercise very gently as much as I can without inducing an M.E. crash (which entails gentle occasional walking).  Unfortunately I can't do anything cardio vascular without major repercussions.

Anyways, my NP and I have decided I will try a very low dose BB again and see if I notice any difference, otherwise, I'm calling the whole thing a write-off except the fact that I now have the diagnosis.

On other life topics - my course is over and I'm in the midst of marking.  It is going agonizingly slowly and I'm hoping grades aren't due at least for another week.  I look forward to being done for the fall.  Getting some gifts off to family and helping my dad do the same is truthfully, more than overwhelming.

I did create a holiday card this year which I'm sending off to some select friends.  It turned out okay so I'll share it with my readers and say - HAPPY HOLIDAYS.