Happy Easter

Sorry I haven't written anything in a while.

Partly, it seems like there is nothing much to say these days.  I feel like when it comes to navigating life with M.E., or despite of M.E., what is there that I haven't written about already?

I'm definitely no better/healthier than I was when I started this blog in 2009.  If anything, I'm worse.  At least I have less resilience for things that most healthy people my age take for granted.  Jobs, outings, socializing, errands… or for that matter, lifting my arms, walking, sitting up for any period of time, folding laundry, you name it. Part of this could be aging, some could be continued deconditioning, and perhaps my case of M.E. is slightly progressive, that is a possibility.

On the plus, while I've had some crashes, I haven't had a full relapse in quite a while.

I've been dog-sitting this past week for the woman who looked after my dog over Christmas.  We did a trade because for one, it's free.  Despite the fact her 2 little dogs are small and don't need much, it has been exhausting.  The first night here, the one dog whined and cried at having been left from 9 p.m. when she dropped them off, until 5 a.m. the next morning.  Needless to say, a night without sleep was NOT a good way for me to start the week!

The only positive, is that there was a full lunar eclipse that night which was pretty amazing and I was up to see it.

Just the small task of two extra dogs has been draining.  The chaos of 3 dogs has been entertaining, but I'm excited for them to go home tomorrow.

I did get one outing with the dogs down to a local island park.  My roommate drove and I will add a few photos.  It was sunny and warmish out after having snowed 15cm two days ago, so that was nice. We still have big piles of snow around, but they are melting fast.

As you know, I absolutely LOVE to get out and this is such a beautiful spot, right on Lake Superior, so I was pretty happy. The trails at this park are short and flat and in the summer, I believe, wheelchair accessible.  Not to mention lots of benches.

I hope you all had a nice Easter whatever you do to celebrate (or not).


TREATMENT FOR ORTHOSTATIC INTOLERANCE

Finally, I said I'd mention my POTS/OI treatment.  I've been taking a drug called midodrine for maybe 2 months now. I'm still on a very very small dose as I'm having some annoying side effects.  My cardiologist is happy for me to experiment with the dosage and keep track of how well it works.  He also gave me a prescription for flourihydrocortisone and wants me to try that one too before I see him again.  I don't think he was happy with how clearly I was still having a huge spike in heart rate on standing, but to be fair, I'm still on a very low dose of midodrine.

The dose of midodrine I'm on hasn't gotten rid of the POTS, however, my jump in heart rate when I stand has definitely decreased.  Instead of 60 or 70 when my feet are up changing to 150+ when I stand, more often it's 120 or sometimes even 100.  Since POTS is diagnosed when it jumps more than 30, it's still POTS, but it is making a little difference.

I've also noticed a little less quantitiy of swooping blackouts when I stand up.  This is harder to track because I don't get them every time I stand, and it fluctuates from week to week. Unfortunately, I notice if I try sitting up more during the day, I still get exhausted and crashy (meaning flu symptoms).  Obviously PEM (post exertional malaise) which is unique to M.E./CFS is not one and the same with POTS.  So while I hoped I'd be able to do quite a bit more once I treated the OI, so far, I haven't found that to be true.

On the other hand, I like being able to cook or do the dishes sitting on my stool and not get that panicked "your heart rate is over 150" feeling.