I had two good days last week. Two days a week is the most I’ve been able to get for the past few years. First, I blamed it on having heavy periods and other menstrual problems. I figured after a hysterectomy, my pain would leave. It hasn’t completely. Sometimes I feel as if I have menstrual cramps, even though I don’t have a uterus.
This is something I intended to speak to my doctor about last August. (I’d made a list in my phone notes of things to tell her the morning of my appointment, stating something about my ribs since January (2021). Something I didn’t write, but still remember, is wanting to tell her that I haven’t felt the same since my surgery in 2019. My energy isn’t the same at all, and I haven’t felt like myself in too long. My balance is way off to the point yoga is impossible, and any stretching causes major spasms.
I am used to dealing with feeling bad throughout my life, but this is the first time it never went away. This was when I realized I was not in control with whatever has been happening to me. Finally, I’m not the one doing something wrong!
After only two days of feeling somewhat normal, I’m exhausted the remaining five days of the week. Every week. Slowly happening for years. And my symptoms worsen. It’s a different type of exhaustion than working all day or not sleeping properly, because rest doesn’t make it go away. It’s a deep-inside-your-soul tired.
When I say I feel “good” for two days a week, I mean I feel “good enough” to throw on some mascara and run a bunch of errands or drive to the beach for fresh air. Maybe get myself some lunch somewhere, usually takeout, in case my body does something weird and unexpected. On average days, I feel “good enough” to clean and do laundry and some projects, taking frequent breaks because of spasms, pain, and almost passing out. That’s a “good” day.
Eight more days before I can even speak to a neurologist.
At this point, I am going to free-write without editing. This is a HUGE thing for me, because I am constantly looking for my mistakes. (This rings true in so many ways!) Editing is taking up too much time, and my brain can’t continue putting thoughts down in a sensible manner. If only I had my own personal editor.
My thoughts are way faster than my fingers can type. If only I could put my thoughts on a recorder and listen back. Or maybe I don’t really want to do that. Eeek.
The past couple of days, I’ve had a clear head, but this morning, I’m already feeling things happening. One pain leaves and shifts to another part of my body. What the fuck. I know for certain this has happened to me so many times over the years, but since the sensations only lasted seconds or minutes, I thought it was normal.
Things like: feeling like my cat’s tail brushed against my leg, but it wasn’t. It only lasted mere seconds, which is easy to ignore. Or waking up and thinking it’s 80 degrees in the house when it’s 50. (Not sweating and not a hot flash.) And then walk around for a while and suddenly feeling the actual temp. Something else I just remembered and have experienced many times is a burning sensation in my thighs. It helped to use a rolling pin, but it never went away like it would with a sore muscle. I blamed it on having low electrolytes, even though they usually didn’t help much.
My vision sometimes gets blurry, like a film over my eyes for several seconds or longer, and then disappears. I noticed this while playing a video game and remembered this has happened before; but because it was so brief, I thought it was caused from makeup or something in my eye. I remember my vision doing this while I was in basic training. They issued me glasses, but I couldn’t see anything with them, so I never wore them. Also, off and on, sometimes bright lights bother me. Sometimes it’s extreme enough to not want to go outside. I could never understand why, so I summed it up to it being “allergies” and maybe causing pressure on my head.
All of this, because some doctor told me allergies probably caused my body to ache. This would have been early to mid-1990s. I think the same doctor gave me a steroid shot with a 4-letter acronym for my allergies – “for swelling” – and I had immediate relief from my body feeling like a balloon. It only lasted a few days.
My massage therapist friend said everything I described to her sounds like the same symptoms her MS clients have. How some women aren’t being diagnosed for 20, 30, even 50 years. Why so long?!!! (Because they aren’t attached to ball sacks!)
Symptoms come and go, unexplained, maybe don’t disable us completely. When the symptoms are gone, we forget about them. Or when we complain about our symptoms, no one takes us seriously. And yet, we are expected to have trust in medical professionals?
When a woman says she’s in pain, you’d better damn well believe it!
In 2016, I was hospitalized for the same stabbing back feeling after I nearly passed out while sitting down at my job. The VA had no record of me going to the ER, because I used the healthcare plan from my job. I don’t know what could have happened when I signed release forms for my records to be faxed, etc. I know I at least told my VA doctor about the hospitalization, but no mention of it exists anywhere in my VA medical records. That’s not to say it was never there, because there have been a LOT of screwups in their system, and things often disappear. Now I regularly download my records, because I trust neither people nor technology. However, I cannot download any records from other sources through the VA system, so I never know what they actually have (or admit to having).
Probably three primary care physicians ago, I complained about the same back issue again. It happened during a time I was very active physically and what I thought to be in pretty good shape for a woman in my 40s. My PCP sent me to physical therapy where I was given a TENS unit that stopped working the first week, and a monthly supply of muscle relaxers. The responsibility was put on me to exercise and do all of the things I was already doing and weren’t working. I trusted the medical community knew what they were doing, since all of my test results were normal. So, I must be the one doing something wrong, right?
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