Don't Tell Me, "Just Exercise!"

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.  

Blood Pressure During Reactions

I get blood pressure problems in waves. I go a few weeks where it's good enough, then I go for a few weeks when it's problematic. Often it's just too low. 90/55 with a resting heart rate of 85 is pretty common for me. I always have a high heart rate. I have not seen it below 72 in the 2 years I've owned my blood pressure machine.

But a problem I'm seeing after exposure, in which I'm reacting, is that my systolic goes up while my diastolic goes down. Today I was downstairs, where a family member lives (so I don't spend much time there), helping my husband do some house repair. I spent some time vacuuming cobwebs and dust too. Fatigue and weakness increased quickly, but it took an hour or so before I got histamine issues. I used my neti pot and black gunk came out of my nose. I couldn't stop coughing for a while. Then came the vertigo and gut pain in the evening. I was so fatigued I couldn't follow what was happening in the TV show we were watching. I took my blood pressure at that point. Earlier in the day it was 93/58 then 98/60 (I took solid licorice extract). This last reading was 108/53. I see this happening whenever I'm reacting. Systolic goes up, diastolic goes down.

Apparently when this happens the body find a way to compensate. It restricts blood vessels and focuses blood on the brain. Apparently people can go years without being aware of blood pressure problems that are causing heart strain because of the body's ways of compensating. But what happens when those compensations fail? Heart failure. The heart can't keep up anymore. What happens when a person like me doesn't have a body that restricts blood flow by narrowing blood vessels? I get super fatigued and dizzy and have to lay down for however long it takes to improve.

http://www.deseretnews.com/article/700185266/Low-diastolic-high-systolic-blood-pressure-a-dangerous-combination.html

In all my research I can't find anything that will raise blood pressure at nighttime without raising cortisol too. Licorice raises cortisol. My nighttime cortisol is high, making it hard to sleep.

So tonight I'm laying here feeling a bit naceous and wondering what the gut cramping is trying to tell me, also feeling too fatigued to sleep. Fatigue and tiredness are not the same thing. I wish I felt more tired.

Tomorrow is another day, a day when my doctor will be in his clinic and I can talk to him.

Menstrual Details and Vent

It's days like today, when I'm stuck in bed, that make me wonder why it's impossible to win disability. The stress caused by trying to keep my job and stay in good graces with coworkers at my job when combating multiple chronic illnesses is just too much.

I've been proud of myself for how little I've called in sick in the past 2 years at my job. Through fibromyalgia flares, POTS flares, period pain, mental health episodes, fatigue both mild and heavy, and more I've worn my best face at work. I always strived to do a good job regardless of how I'm feeling. I'm so proud of myself for doing as well as I have at this job considering all my problems. I only reserve calling in sick for when it's impossible to drive. If I'm not safe to drive, work is out of the question.

The main reason I call in sick? The first day of my period. My boss was understanding of this situation when she hired me, which gave me so much relief. I was very concerned with finding a job that would work with my debilitating periods. I'm only part time a few days a week, so it's not every month that I need to call in sick for it. Yes, I've been quite happy with how little I've had to call in sick considering I'm chronically ill and didn't work for a year and a half due to illness.

I had to call in sick today. Not because I was planning to or want to, as my brain was very much in gear for what I was going to accomplish at work today. But because my period is 3 days early.

I feel that I need to publicly explain what the first day of my period is like, because I'm constantly met with so little understanding.

It starts with a terrible week of PMS. Cramping, strong mood issues, depersonalization (feel like reality is a dream and I'm not actually present in it), extreme bloating, very painful heavy breasts that don't fit in my bras during that week, and big fluctuations in blood sugar and blood pressure... The PMS is bad enough on its own.

Then the first day comes, sometimes over night, sometimes in the middle of the day. Lately it's been a slow build up to the explosion of problems, but I used to wake up to the extremes without warning. Lately it starts with vertigo that slowly increases, and that's my warning to check my Diva Cup to see if I've started bleeding. It doesn't take long for the diarrhea to kick in. All that bloating from the week of PMS? It saves up for the first day, no matter how good my bowel movements are that week. Vertigo + diarrhea + morning hunger = very unstable. Low blood sugar, low blood pressure, terrible circulation, freezing cold shivering... I sometimes end up crawling to the toilet.

Then, after the preliminary problems, comes the pain. Now I've had some periods this year with very little pain. Acupuncture, colonics, and my herbs do make a huge difference. But I never know if I'll have a bad first day or a not so bad first day (only in terms of pain.) When I have pain, the pain can be so horrendous that I'm screaming and crying. Moving any muscle, even a toe, can send waves of pure pain through my whole body. When I can't stop shaking/ shivering from the adrenaline rush the pain gives me the pain only amplifies. I've been in this situation enough times that I'm sure I have legit PTSD from my periods. It's traumatic. Think I'm exaggerating?  Well I can't prove it to you, but just ask my husband or mom. I am always on high alert with my periods always prepared to go to the ER if necessary... Except that when I'm in that much pain I can't move, and going to the ER requires moving.

For several years I relied in ibuprofen to manage the pain. The first time I was clued into how abnormal my periods really were was when a therapist I was the secretary for couldn't belive I had already taken 12 ibprofen that day and I was still in obvious pain. She told me she's never needed more than 2 or 3 to totally manage the pain. A doctor gave me opiods for it. They didn't quite work, just made my vertigo way more intense. This is why I think I have liver problems. My naturopath now has me on a tincture for pain that actually works exceptionally well, but leaves me feeling loopy and very fatigued. It doesn't help me go to work, but it lets me rest in bed without extreme pain. 

The next problem is that I can't rest in bed not moving for long. The amount of blood I bleed is crazy. The average woman looses 2 ounces of blood per period. A Diva Cup holds 1 ounce. For the first few years of using my Diva Cup I was emptying it every couple of hours when it was over flowing. On average I lost around 12-15 ounces per period, 3/4ths of it on the first day. In the blood would often be clots. Some clots were the size of a quarter, some the size of a golf ball. With all the medical help I've been getting in the last few years I've reduced down to losing about 6-9 oz per period. The clotting is more rare now, and generally smaller.

Have you ever sat on the toilet with extreme heaviness, constant diarrhea that gives exreme waves of pain through the whole body, hardly able to breathe from a heart rate so high that it feels like your heart will puncture a hole in your ribs? I've sat on the toilet thinking that was how I was going to die. I'm not prone to fainting, but I've sat there seeing spinning colors and dark tunnels in my vision.

Women, do you know what it's like to bleed this heavy? I've heard from some women that their periods are light enough at times that they don't need to wear any hygiene products. I've never experienced anything that light before. I don't know what it's like to have a "normal" period that doesn't really disrupt life much.

My gyno was convinced I have endometriosis: extreme pain, extreme bleeding, large clots in my blood, and what she saw during a pap smear. She wanted to do surgery: a laproscopy. The problem was it's $2,000 and insurance doesn't cover it. So I never ended up having it done to confirm the endometreosis, but other doctors I saw also said they were highly suspicious of endometresis. The biggest problem is that what if there's more than endo? What if I have cysts or fibroids? Without that surgery we won't know. But the fact that I'm slowly improving every year under my naturopath is giving me hope.

When I call in sick because of my period, this is what I'm actually calling in sick for. My period is pure hell. It's not just a few extra bathroom trips or a little extra pain. I so wish and pray my periods were that easy and manageable.

And so I lay here. The dizziness isn't bad as long as I'm still, but the cramping is starting. I'm wondering how to get up and make it to the bathroom. I'm wondering if I'll make it to the kitchen for food and my tincture. I have an awesome husband who takes care of me, but when he can't be home I need to manage on my own.

Don't ever assume I'm faking or using my period as an excuse. I have to plan my entire life around my period. I have to go on trips to my doctor based on when I'm going to start my period. I have to miss important events or family matters over my period. I can't plan big events more than a few months out because I have to make plans around when I'll be on my period. We can't make vacation plans when my husband has very rare time off if I'm on my period then. My whole life revolves around my period, and yes, it's a big deal. My period is the other thing I share my life with. It's my physically and mentally abusive soul mate. It's my jail cell. Don't ever assume I use it as an excuse, because I would much rather live my life without it being in control. When I say no because of my period it's sincere and honest.

Between this, mold toxicity and environmental allergies, and chemical sensitivities can you understand why I'm such a control freak that developed adrenal issues bad enough to cause POTS?

I need a psychologist. I know it. But I can't afford all the help I need. I'm just trying to live somewhat normally by working part time.

So please, work with me. Have mercy on me. I'm in a constant battle with my body. The stress of living after my body problems is too much for me.