Holidays Chronically Ill Style

I won't bombard you with ideas about how to manage the holidays while ill. There are plenty of useful articles about ways to cope with the season, family, expectations etc.

I find this time of year hard - I lost both my mom and my sister in December. I have two brothers with severe mental illnesses and the holidays often trigger relapses for them. Being far away from them makes it hard to be family support (especially when they won't answer the phone, receive mail etc.). I'm feeling a lot of guilt over being such a poor support. On the other hand, I'm at or over capacity trying to be a support for my dad while coping with my own poor health. It is just a struggle right now, I'm feeling inadequate.

I've been over-doing and pushing a lot lately and right now I'm not surprisingly reaping the consequences - I'm crashed. I have the leeway to take a break from work right now which is excellent. But mostly I'm just spending my time laying in bed or on the sofa a bit bored - but too sick and fluey and weak and awful to do very much. And then I watch TV and the Christmas shows and movies and even commercials all show happy families spending time together making me feel even more alone and inadequate. I realise struggling at Christmas is not exclusive to the chronically ill, but it certainly adds a whole other layer.

In a week it will be over and in a way that will be a relief.  That's not to say I won't enjoy some moments with my dad or roommate. For one, there was a full moon last night on the solstice and despite feeling awful I convinced my roommate to take a short walk with me and Teags when she got home from work. It was cold and snowy but clear.  The moon was huge and the snow sparkled like glitter. There were long moon shadows cast by trees and houses in the neighbourhood.

I also did a very very short walk with my dad at the harbour last weekend. The sun was beautiful off the harbour ice - I'm posting a photo of the dog so you can see.

If you celebrate Christmas or Boxing Day or New Years, Happy Holidays!!! I hope you find ways to enjoy the season. Be gentle and kind with yourself.

My M.E. Exercise Experiment

For 7 weeks now I've been engaging in an experiment. I've been swimming at the local pool (it's two blocks away, I drive).  Almost every week, once a week, I've gone and done some laps in the late morning (my best/highest energy) time of day.

There are many reasons why this is a bad idea.

First, while most Dr.s and the general public are ignorant about the detrimental effects of exertion and exercise on people with M.E., the research is starting to show that what patients and specialists have been claiming for years and years is true: M.E. is a disease that effects metabolism on a cellular level.  Also, there is a quantity of research now which demonstrates that activity, exertion, or "pushing" makes M.E. folks sicker (there is both an immune and inflammatory response).

Anecdotally, I know a couple folks with M.E. who had a better period, tried to engage in life/work/exercise again, and ended up permanently relapsed and worse than they were when they originally got ill.  Finally, since I crash from just standing too long (e.g. doing dishes standing), taking my dad on an outing, driving, being exposed to too much noise and/or florescent lighting, visiting on the phone too long, why would I add more exertion to my life?

All these are logical arguments against me doing this experiment.

Then why did I do it anyways?

• Since I've started a low dose Beta Blocker for POTS, I've gained some weight and often feel disgusted by my own body. I can't see eating much less, which leaves few options for losing a little.
• For someone who used to love being outdoors and athletic, and who now understands this disease is never going away, lately I've felt trapped in my own body. I just want to push and sweat. I miss being active so much I could scream.
• I've been reading about POTS and how sometimes exercise can really make a difference, it's not a cure, but it can help.
• While exertion makes M.E. symptoms worse, I know that de-conditioning over 16+ years now is also not good for me and could eventually lead to other health problems.
• I love to swim - I swam competitively as a child and teen.
• Ultimately I was curious to see what would happen. I know I don't have a mild case of M.E., but I've only been severe here and there. I'm one of those moderate cases. That said, moderate M.E. means I'm mostly home bound and have less energy and resilience than most people with a whole host of other illnesses.

So what have I discovered thus far?:

First, I've done the same amount of swimming each time.  I decided if I felt a slight improvement over time I would add a little. It sure hasn't happened yet.

Interestingly, my best swim, the one where I felt the strongest and most capable, was the first!  The next best swim was the 2nd week.

By the 3rd swim/week my arms and legs fatigued more easily, like there was a complete inability on a muscular cellular level to produce any energy/strength. Why didn't I quit there? I thought, "What if this is the point where I just need to push through?" Or, "Perhaps this is a bad one due to monthly fluctuations?"

One week I went 2x (early and late in the week) and the next week I was in bed much more and felt just terrible - then I had to skip a week.  Last week I was so weak, sore, and burning during the swim it was all I could do not to cry during.  I had to take more breaks and after the swim my body felt particularly poorly (achy, weak, shaky). I was horribly crashed for 2 days, there was one day I could barely stand at all. I decided I should quit.

I went back this week and thankfully I wasn't quite as poorly, still, I was far far worse/less capable than week one. (I also don't know how badly I will crash). Problematically, I had horrid air hunger during the swim like I wasn't getting enough air/oxygen and my chest hurt.  I'm curious how high my heart rate was and whether this breathlessness was a heart-related symptom?

Will I continue with the experiment? I haven't yet decided.  Is the M.E. overall worse? It's hard to say,  October was a bad month and November a little better overall.  Following each session, though, I'm definitely worse and this worsening lasts a day or two and clearly impacts my immune system with worsened sore throat (worse than I've had in ages) and flu-like fatigue and weakness. Overall my ability to exercise/exert is much worse.

Do I have more muscle? I must have, I won't believe I don't, even though I'm not swimming much, I've been doing this almost every week for 2 months!  Do I have better aerobic capacity?  No! I would guess that my aerobic capacity has actually diminished or gotten progressively worse.