Friday, February 22, 2019

Just doing what I have to do

Life with autoimmune disease is so weird. But y'all know that.

Want to hear all about my particular and most recent brand of weirdness? I'll make you a deal -- you listen to mine and I want to hear all about yours. OK?

I appreciate your very sympathetic ears and eyes enormously. Yesterday I was reminded yet again how difficult it is to help friends and loved ones understand what living with autoimmune disease can be like when my hair stylist asked, "So you look good. You must be all over that autoimmune stuff, right?"

I really, really appreciate being able to connect with others who understand what it feels like to be asked a question like that.

In fact, this week and whole month in general have been kind of crummy. For various reasons, but mostly because I seem to be stuck in an energy black hole yet again. I knew better than to go into great detail telling her she was wrong, but I did tell my stylist that I've been pretty tired; to which she replied how exhausted she was because she and her family had gone clamming out at the coast, had a full day of clients ahead of her, then was planning on shucking and freezing all those yummy razor clams that were harvested.

I agreed with her. That would tire anyone out, I said. I put on my best sympathetic face but inwardly I was turning green with envy. Dang. What I wouldn't give to have the energy to work full time and take trips out to the beach clamming.

She finished up with my haircut, we said goodbye and I slogged on home. And promptly put myself to bed.

This whole autoimmune fatigue thing is by far the most frustrating and difficult part of my disease. Do y'all feel that way too? I've said repeatedly that dealing with the dryness, the neuropathy, the joint pain, the skin hysterics, and everything else is a piece of cake compared to the fastigue. The totally unpredictable, bone crunching, and inexplicable fatigue that rules each and every day.

As I type this, I am completely wiped out. I feel as though forming comprehensible sentences through my wooly and thick brain fog requires a ridiculous amount of focus. The skin on my face and nose is doing that very bizarre thing in response to lack of energy: the skin feels ice cold. I'm wondering if I'll be able to scrounge up enough energy to have dinner out with friends this evening. (It's not looking good, by the way...) I'm doing my best not to scratch myself silly over this rash that's been plaguing me since November, and I'm trying to ignore the neuropathy symptoms in my feet and legs. I can't have my hip bursae injected for another two weeks which means walking for any length of time causes my hips to hurt like heck and makes sleeping on my side impossible. And then over the last month my blood sugars tend to take a dive -- who knows why? -- more times than I like. I could wah wah wah more but won't inflict that on y'all today.

My point, other than indulging myself in one big whine session, is a discussion about limitations and acceptance. And about my frustration with myself. I have been dealing with this stuff for seventeen, yes, SEVENTEEN years. When I started working through all the phases of grief after realizing the implications of my diagnosis, I fully expected that I would eventually have my compensation act together. Eventually meaning within oh, four or five years.

So needless to say, that didn't happen.

Which is not to say that I haven't learned a few things along the way. I have. For example: I have learned to step back from my anger as best I can, and try my best to see any positives in the moment that I am experiencing. So I'm doing my best to appreciate that it looks like a snowglobe outside of my living room window right now, the fireplace is making this room snug and cozy, and I have a snuggly schnauzer napping in front of said fire. Just acknowledging these things and writing them down makes me feel a bit better.

A bit.

Humor goes a long way in dragging me out of my pity parties, too. Things like this, which incidentally, probably only a chronically ill person would find funny. But I think it's hilarious. 
Found here:

Is that not perfect? Oh my goodness.

Thanks for the listen. Tell me what's going on with you. What helps you get through this struggle?


Kelly said...

Oh Julia, that fire analogy is spot on and hilarious. Humor does help. It's why I've been such a longtime admirer of your blog. I can't complain, I can still babysit my grandchildren, play tennis, and do a host of other things I enjoy doing, just not all in one day, not for several hours at a stretch in any given day, and not for several days in a row (particularly the tennis).

My progression of whatever I've got has been mild (in spite of all evidence and opinion to the contrary, some medical professionals still suspect Sjogren's) and in terms of energy, I now seem actually to have a more steady supply if I guard it carefully than when I was younger. Used to be I had wildly fluctuating amounts. Some days in my 20's and 30's, I couldn't want to drag myself out of bed and other magical days I could go and go and go, and I did, always precipitating a collapse. It was a vicious cycle. I think learning to be more careful in planning has helped me even things out. When I feel good, I know better than to overdo because I'll pay for days. When I HAVE to overdo, and sometimes we do, then I plan for at least a day of recovery.

So all of this is to say that what gets me through is knowing that even though I don't have any control over what crazy symptoms are going to pop up in addition to the ongoing dryness to puzzle the doctors (intractable hives, exercise-induced vasculitis, bladder pain syndrome, etc...) or when I'm going to have a zero energy, achy-breaky day hit me out of the blue, if I plan carefully, I really can make things a little better much of the time.

It IS aggravating when people who don't really know you make glib assumptions about you. I'm sorry that your hairdresser made such a ridiculous statement. By now you'd think everyone would know that people don't "get over" autoimmune conditions, they manage them, if they are lucky, they manage also to live what looks to the outside world pretty much like a "normal" life. You are very brave and I, for one, very much appreciate all that you have given to the cause of educating the world about what it's like on the inside of the battle against an immune system gone out of control and you have done it always in such entertaining style. Many thanks and virtual hugs to you!

AnnaDe said...

Oh my! Your post struck home as lately I've been trying to put out some longstanding fires and coping with lots of new ones. I really appreciate your ability to capture how it IS and to do it with such humor. You really brighten my days even though I seldom post comments. Do know that you are much appreciated. Am so glad you are still keeping up your blog. Don't quit!!

Anonymous said...

You're right Julia....Perfectly hilarious!

annie said...

Depending on what kind of day I'm experiencing, I will either have patience and explain once again what I've explained hundreds of times before, about sjogren's or just will not bother. It becomes very tedious to constantly tell people
(i.e. your family and friends) that you're fatigued not because you've had a busy day working/ shopping/ housecleaning/ and doing other activities, but you've been lying on the sofa resting.

I've noticed the last few years, that the extremes of temeperatures (cold damp winters, hot humid summers) give me problems to the extent that I become housebound. I feel a debilitating fatigue that is a little worrisome.

I live in northeast Canada, and this winter has been brutal. I was diagnosed with sjogren's in 2009, but have been sick longer with fibro and chronic fatigue syndrome.

I try to be kinder to myself and limit what outings I participate in, and definitely need to rest in between any kind of gathering, shopping, or appointment as it may take me days to recuperate sometimes.

I don't know if it's the aging process or the progression of the disease, but it seems to be more debilitating from one year to the next.

Thanks Julia for all the info you've given me throughout the years. This is where I came to read up on sjogren's and learnt so much.