I thought I’d do a series all about the challenges of ‘self care’ because it’s something that we are always told we should focus on as it’s an important part of managing chronic illness. It’s supposed to help keep our stress levels down which has a positive effect on our disease.
I don’t disagree, of course. Self care is obviously an important part of just being human, sick or not. At minimum we should all indulge in a shower and a shave as well as take time to decompress and destress every day. And we should always ‘take time to smell the roses’ along the way in life so as not to go crazy and end up on the front page of The Daily Mail.
My gosh, no one wants to end up there!
‘Self care’ in chronic illness goes further than that, though. It’s things we as perpetually sick people should do for ourselves in order to make our miserable lives a little more bearable, for ourselves and those around us.
When it comes to those of us with chronic mast cell dysfunction, though, it can be more than difficult for us to do anything “they” say we should do, due to the very nature of our disease. So-called self care poses its own set of challenges, and is complicated by the mechanics of mast cell activation, just like everything else.
How? Dr. Afrin put it plainly when he said:
…there are direct mechanisms by which stress, both physical and psychological can directly lead to mast cell activation. Of course there are indirect methods of activation from stress as well.
Some people might interpret his idea of stress as something extreme, like trying to climb Mt. Everest (physical) or being yelled at by Gordon Ramsay for making scrambled eggs wrong (emotional). It actually doesn’t have to be that extreme at all. We can get triggered just by watching a funny movie or by jumping up too quickly to run to the toilet to pee when it’s over!
I am not exaggerating, either. It really is that ridiculously easy to stir up our immune response.
That’s why this disease is so complex and difficult to manage. It’s a nightmare to have such a hair-trigger immune system. It’s like living with a guard dog that wants to kill everyone, including the Fed Ex guy and your dear old grandma, just in case they are the enemy in disguise.
So when I read articles giving advice on how to manage stress and pamper myself as a patient with a chronic, debilitating illness, I have to take most of it with a grain of salt. If I did half the things they said I would end up in the ER! Things like:
A leisurely hike through meadows of wildflowers on a bright, sunny day would simply do me in right about now…
Herbal teas totally trigger me…
Unscented candles are fine, but only in a well ventilated space and not too many of them…
No hot bubble baths (only warm, no bubbles!) and NO saunas/hot tubs/hot springs/fun in the pool…
No manicures, pedicures, fancy soaps, body scrubs, wraps, etc. (unless I make them by hand, which I do and enjoy)…
Massage is and has always been excruciating for me most of the time and while I still enjoy giving them, I rarely enjoy it myself. It hurts!
Sitting outside at dusk, doing yoga while watching the sun set over the Tetons IS doable…
IF my yoga pants aren’t too tight and itchy and IF it’s not too hot/cold and IF there are no mosquitoes and IF the bumpy truck ride up to the perfect lookout/yoga spot hasn’t triggered me…
You get the picture.
Like I said, it’s a real challenge. It’s like walking a tightrope every day, blindfolded, carrying a bag of kittens over my shoulder, and if I go too far to one side or the other, it’s all over.
Still, there must be ways I can practice ‘self care’ more often in order to get through this upcoming Spring/Summer Trigger Fest I’ll be experiencing as the pollen count goes up and the sun stays longer and shines brighter than ever in the sky.
I’ll be spending the next few weeks trying to figure out what works (for me!), so stay tuned for my next installment in this ‘self care’ series. Hopefully I’ll have some answers. Until then, do take care of yourself (but not the wrong kind of care!) and remember, we’re in this craziness together.