I get pretty upset when people tell me, "Just exercise more! Exercise cures everything!" It shows they have no understanding of my illness. It also shows that they don't notice how much exercise I do get and how proud I am about it. I lift weights at home, use my Pilates ring, go on 1-2 mile walks a couple times a week, and work at a job in which I'm on my feet the whole time. I also do 50-100 jumping jacks at a time when I have adrenaline rushes to burn off, and that's almost daily. To you this might sound like a joke, but to me it's more than I was able to do a couple of years ago and I'm very proud of my progress.
On a day like today I can't simply just get up and exercise to fix my symptoms. My head feels like a hot air balloon, like it might float away. It's making me dizzy, and when I get up the POTS symptoms kick in. I instantly get clammy with sweat, my heart rate skyrockets, my heart palpitates, I see colors spinning all around me and my vision blurs, and my muscles loose strength. It's as though I'm on the verge of fainting, but I don't faint easily. PMS made me faint once, but I'm not PMSing right now. I must let myself sit down or drop to the floor until my heart calms down and my vision returns. Then when I stand back up again I have to do it very slowly, and I might start feeling the symptoms again if I start walking too soon. As long as I'm still I feel okay, but I can't stay still for too long without my blood pressure getting too low and I crash.
I'm not feeling like this every day. I don't feel the POTS symptoms every day. Other days I can just have fatigue so strong that even walking around the house makes the fatigue worse. On days like that I have to do nothing. My body is begging for time to rest and repair, and if I dare try to exert myself it's going to give me the equivalent of the Blue Screen of Death (the worst error message your computer can give you.) On days like this I don't necessary get dizzy with high heart rate when getting up. I just have to force my muscles to move, because they really really don't want to. It's more than just willpower to move my legs, it's necessity. If I don't walk to the kitchen I won't eat. If I don't eat I'll get hypoglycemic again. If I get hypoglycemic I might be so far gone that I'll go into a coma. Of course I get terribly anxiety on these days, so I can't just lay in bed resting. I have to somehow shut off my brain with homeopathic pellets and pills. They can leave my brain too numb to enjoy anything, but not let me just fall asleep.
Some days I think I'm having a good enough day and I do go out for that long walk, only to come home and measure my blood sugar in the 60's or so. I get symptomatic when my blood sugar falls below 85 - and before you argue that's a healthy number, you need to understand that my body can't handle being below 85 even if your body feels best at that number. When I'm at about 85 I start to feel the tremors and shakes, the low dull headache, the mild tunnel vision, and the deep cold start to settle into my body. We all have different bodies with different needs.
I'm not getting low blood sugar quite as easily these days, but my diet is so careful and I still take my chromium with pancreas glandular. I'm also having fewer days with the severe chronic fatigue that forces me to do nothing all day. I'm recovering faster from over excretion, and I'm finding that I have more days where going for that long walk doesn't make me crash. I never come home from that long walk feeling better than before I went, it does take a lot of energy for me, but I'm finding I crash less often after my walks. That said, what if I over exercise to try to improve my health and end up going backwards by overspending myself? I don't want to lose any progress I've made with my health. I need to be careful with how I spend my energy.
...But I am having more and more days when I go to work not feeling rested enough to handle the shift without some sort of boost. I used to only add matcha to my water bottle on days when I really needed the caffeine, but it's turned into needing that matcha every shift, 4 days a week. I haven't had a shift in a few months in which I've felt able to work without the caffeine. So I can feel myself sliding backwards from over extending myself. Ideally, I'd take a few weeks off of work to let my body fully rest, but financially I cannot afford to do that. It also wouldn't be fair to my co-workers. And that job is physical. It is exercise for me. Being on my feet for 4 hours, walking around the store all day, lifting heavy boxes, going up and down from bottom shelf to top shelf... I feel my best in jobs like this. My blood needs to keep moving to feel well. I'd do so much worse at a desk job. But it's very draining. I do so little at home because I save up all my energy and strength for being at work.
I'm getting so sick of hearing, "Just exercise!" If you're able to say that to me, you clearly have never experienced this level of fatigue. Don't argue with me. Arguing makes me angry and drains me way too quickly. Anger doesn't settle down for hours in my body. My body can't processes strong emotions well. My adrenals can't keep up with the energy strong emotions take. All I'm asking is that if you want to give me a suggestion then please don't give it to me as a demand. Don't tell me what to do. Respect my needs. I'm very open to suggestions when they're given to me in a gentle non-judgmental manor after I've been listened to. But don't come on strong barking orders at me when you haven't listened to what I'm going through. I'm likely to shut you out of my life and ignore you as a defense.
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