This is my entry today for Becky’s #July Squares. I thought that this shot would be an unusual one.
This is my entry today for Becky’s #July Squares. I thought that this shot would be an unusual one.
I needed to get up close to see if these flowers were real. They are going every which-way and looked like they had gone absolutely haywire.
Once I was only two feet away from them, I realized that everything in the arrangement was 100% natural, which surprised me.
Which come to think of it, is what it is like living with a Primary Immune Deficiency (PID) and fibromyalgia. It often feels like your entire body’s systems have gone haywire.
This is what my body feels like today:
It seems like it’s been a long time since I’ve written about living with chronic health conditions. That’s not because they have magically disappeared, but because I am actually healthier up here in Northern California. (I’ve mentioned this before but…. cleaner air, virtually no extreme heat, the ability to get more exercise, living in a community of people where I can both give and receive support, being 5 minutes from from medical care instead of 45 minutes – 2 hours away, having family nearby………)
But that doesn’t mean that the health conditions aren’t still there. They most definitely are. They just don’t flare as often.
And right now, well……… my fibromyalgia has definitely flared. I’ve been in increasing pain for several days and today my body just has been screaming at me. I don’t think I’ve used that description before, but it’s pretty accurate. My soft tissue aches and every nerve ending in my body feels like it’s on fire. Or that a malevolent force has been sending a high voltage of electricity through my entire nervous system.
So. I canceled my obligations, and have been taking some Tylenol. And using a heating pad.
But the first thing I did after breakfast may sound counter intuitive.
I took a two mile walk with my dog and a friend. (Someone else took our friend’s dog).
Yes, you read that correctly. I took a 2 mile walk.
Easy? No. Useful? Yes.
And beautiful. We walked part way around the lake, and then walked through the botanical gardens in the park. The flowers were in full bloom and were absolutely gorgeous. (Some pictures of that tomorrow.)
Please understand that a 2 mile walk is not a marathon for me. I usually walk less than that, but not by much. Typically, I and the dogs walk 1-1.5 miles, so I’m not suggesting that if you normally only walk 0.25 miles you all of a sudden boost it up to 2 miles. That would definitely not be good for you. But my dog has had several bouts with a sore infected paw lately, and she hasn’t been able to walk very far for the past few weeks. I figured that that was probably part of why I had a fibro flare – I hadn’t been getting my usual amount of exercise. Or my usual amount of sleep, for that matter.( She is now back to her healthy and happy self, I’m happy to report.)
After that I came home, ate lunch, lay down on a heating pad and had a good solid nap. I’m not completely better – fibro doesn’t work that way. But I’m not worse, either. And that’s at least something.
When you feel like this. You wake up, you look rather distrustingly out at the world, and you think, “Really? You want me to actually get up and function in the world? You have got to be kidding me.” At least that’s how I felt Saturday morning, which was the morning after I had been hooked to an IV for 7½ hours, and 2 hours the day before that. An honestly, that’s kind of how I felt the next morning as well. My head still hurt from the IVIG headache, and my muscles and soft tissue still haven’t forgiven me for pumping all those medications through my body.
But I also know on mornings like this that if I don’t get up and start moving, I will feel worse. The infusions cause their own muscle pain but they also aggregate the fibromyalgia. And with fibro, the worst thing you can do is to be immobile. It’s true that for a few days after my infusions I can’t walk a mile, or do any sort of prolonged workout. (Well, prolonged for me, which to other people would probably be considered very short.) But I know that I have to get up, get my muscles moving, and do things.
I also know I need to be gentle with myself and not push myself too hard, which I have a tendency to do. Yesterday I wanted so much to walk the dog 0.75 of a mile, but knew I would probably regret it, so I settled for ½ a mile. I’m glad I did. 20 minutes after getting home I crashed, and had to lie down for half an hour. But I did feel better for having walked. And the dog definitely was happier. Great companions, dogs. They encourage you to do what you know you should.
Mornings that feel like this, I think of Judith Viorst’s wonderful children’s book Alexander and the Terrible, Horrible, No Good, Very Bad Day, in which everything seems to go wrong for the youngest of three brothers. Repeatedly throughout the book, when things don’t turn out the way he would wish, Alexander bemoans his fate by saying, “I think I’ll move to Australia.” Our 30-something older daughter can still recite it word for word. Alexandr’s phrase has become something of a short hand code within our family to signal that nothing seems to be going right. The book ends with Alexander’s mother tucking all three brothers in bed for the night and reassuring him that “Some days are [just] like that… even in Australia.”
But you needn’t to be a child to enjoy this book. It is worth pulling out anytime you have a morning like this. Or a day like this. It will get you smiling, and maybe even laughing. And laughter is good for the soul.
Because, of course, (to paraphrase):
~Some mornings are like this,…. even in Australia.
Yesterday I felt pretty good. Today I feel pretty terrible. Such is the CVID life. I’m dizzy, tired, and have no energy. Perhaps it’s because I’ve pushed myself too hard these last few days, or because I didn’t sleep well, or because it’s hot, or because I ate/drank some foods that my digestive system didn’t agree with, perhaps it’s because….. well, you get it. Everyone with a severe chronic disease gets it.
One of the problems with a serious chronic condition is the seeming randomness of it from day to day. Sometimes we can track down a cause and effect (i.e., my sleep app confirmed what I already knew: I didn’t sleep well), but sometimes we have no idea. Or we can guess on some things, but have no idea what else might be playing into it. It is the seeming randomness that drives me crazy. I want to scream, “I had plans for today, dagnabbit!” But instead, I’m spending most of the day in bed, sleeping and resting, which obviously my body needs. Which is part of Taking Care of Ourselves.
But I have been writing a lot about fitness lately, and the question is, how do we keep up with a fitness routine on days like today?
The first thing is to realize that we can’t compare ourselves with healthy people. My staying in bed today isn’t laziness or giving up. Neither is it a case of staying in bed simply because that would be the easy thing to do. It is, in fact, what my body is demanding. I’m sure it has been hinting to me over the last few days that I needed to get more rest, but I ignored it, and so here I am, basically immobilized for the day.
So what to do about fitness on days like today? We do what we can. The important thing in exercise, or any discipline for that matter, is consistency. It is almost always better to do something rather than nothing. What have I done so far today? I spent at least 20 minutes stretching every which way under the covers before I got up. That practice is not only good for my overall health, it helps to counteract the increase in fibromyalgic pain that would occur from staying in bed most of the day. I also should be able to still take the dog for a short walk. And I hope to still be able to go to rehearsal. Singing will help me feel better.
Many years ago I was with an elderly aunt whom I hadn’t seen in a very long time. She was in her 80’s then, and looked like she was still very physically active, but when I asked her how she was doing, she admitted that she had really slowed down. She had contracted polio as a child, but had never let that stop her from achieving things. But the muscles that had been retrained to take over for the muscles that had been paralyzed by polio were beginning to wear out; those muscles had been doing not only their own jobs for decades, but also the “take-over” jobs that they were not designed to do. So she was finding that she was not not as mobile as she had been, and that she needed to be really kind to her muscles.
Her solution? Each morning she did some gentle and then more serious stretching while she was still lying down in bed. Under the covers, while her muscles were still warm. She said it made a world of difference not only for her overworked muscles, but also for her arthritis. She was sharing that trick with me because I had just told her that I had been diagnosed with pretty severe fibromyalgia a few years before.
Have I practiced that particular discipline every day since then? Ummm…. not even close. Not even close to close. But now, as I’m trying to consciously work some fitness into my life, I find these under-the-covers-first-thing-before-I-get-up stretches are very helpful. It feels good to stretch my muscles again, and my body doesn’t seem to complain with this routine because: I’m not putting any weight on any of my joints as I stretch, and I’m stretching while my muscles are still luxuriously warm. This is me taking very small steps these last two weeks because I have been feeling super exhausted and run down. I can’t meet my daily exercise goals at the moment, which is why it is important to at least do what I can do, rather than doing nothing at all. This should be the mantra for all of us with serious health conditions. We should be mindful about the choices that we make, and then do what we can do. And knowing that I have done something that is good for my body makes my day better.
Not necessarily in order:
And……… well, you get the idea. I don’t sleep that sporadically during the day, but that’s an understatement of how often I think about it. And many days I need 10 – 12 hours of sleep a night. That doesn’t leave much time to get anything done during the hours I’m awake. If I have appointments on a given day, that often exhausts me all by itself, and nothing else really gets done. What between the Chronic Fatigue of the Fibromyalgia and the Chronic Fatigue of an immune deficiency, I don’t begin to have enough energy for everything else on the list. So I pick and choose. But all too often, other than eating, sleeping, walking the dog and talking with my husband, I don’t have energy for much else. And sometimes I can’t even walk the dog. And I sure wish it were different. I really, really wish it were different.
I was in a minor car accident on April 20th. For a few days I felt fine. I kept telling everyone, “I’m fine. Really. Thanks, but fine.” Well that was true for a little less than week, and then everything started to hurt. The mild bouncing around caused my fibromyalgia to flare up, and re-triggered my intractable migraines. I was doing so well. And I had gotten my once-every-three-months lydocaine shots in my head literally 24 hours before the accident. My head had been blessedly numb.
But a week after the accident, when the re-triggered migraine was not responding to the prescribed combination of migraine meds and pain killers, I went to the ER. Many hours later, after a cocktail of IV meds which did little, I was given 1mg of a very potent narcotic in my IV line. That helped a lot. And broke the cycle of the intense pain. At least the pain that returned several hours later was 2 points lower on the 10 point pain scale that it had been when I went in.
So. I’m still not back to normal and I have infusions for the next day and a half. (Counting from Wednesday night.) This is the best that I have for now. I’ll post more when I can.