July is Rough.

I have fainted 7 times now since June 1st. I know it’s 7 because I mark it in my calendar so when any doctor asks about falls I have the information handy. While fainting isn’t technically falling for their purposes I include it because my body is failing me on so many levels.

I joke that my body is an asshole but it’s true. Between attacking itself on a cellular level for MS, Fibromyalgia and Ménière’s and my basic inability to now stay conscious it is definitely not doing any favors. It kind of feels like… spoiler alert, Deathshot (dead shot? Death stroke? Fuck me) the guy with one eye in the DC Titans show. His son is in his body and tries to force him to step off the sidewalk in front of a bus. That is what it feels like my body is doing to me. There is no apparent desire to keep itself alive so I’m constantly fighting it so I can live.

I took my first Kesimpta shot 2 days ago now. Actually, my husband gave it to me. You’d think with all of my tattoos and frequency of needles in my body for medical purposes using an auto injector would be a breeze. There’s something about doing it myself that makes me queasy. the second click occurred and there was a sudden sharp pain that was immensely unpleasant. I had a severe headache that turned into a migraine by the end of the day. A general unpleasant feeling (more than my typical feeling like shit every day) and by 7 hours later I had a low grade fever. Half a degree from “time to go to the ER”. I self medicated with a lot of Tylenol. Yesterday the bruise from my shot was a very dark purple and it was not small compared to my random running into things. My body hurt so bad that I wasn’t sure if it was from the medication or the 77+ degree temperature inside. I was miserable. I had 3 ice packs on my body in order to be able to finally get to sleep.

Now, it’s 5:24 am and I’ve been up for 2 hours. Unable to go back to sleep because of the various types of pain happening in my body. 10 more days in July and no end in sight for the unbearable heat wave that is this summer.

I guess I should mention that I actually do not have POTs, my cardiologist said it could be autonomic heart issues from my MS but it’s most likely a flare of my neurogenic cardio syncope because of the weight loss, calorie intake and I’m throwing in heat because it’s my nemesis. I see home again today after 2 weeks of an insane amount of salt tablets (that make my mouth so dry it feels like sand and makes it difficult to swallow) and thigh high 30-40 compression stockings… in 90+ degree weather. With those, I have still fainted. My service dog has taken to licking my face until I regain consciousness it’s happening so often now.

I’m over it. I’m tired of the extra appointments and miss the days of “see you next year for a check up”. Though the dermatologist did say that to me this week because I’m clear of anything wonky on my skills n this year. I have 4 physical therapists I see at least 2 each week. I just want to peace out of all the chaos that is my body. I’m ready for mid August, when the kids go back to in person school (the 9 year old masked and 15 year old vaccinated) and I get proper, long naps back in the dark, cooler space of my office/napping room. Though I will say I’m not looking forward to the possible germs they will bring home knowing that if I stay on Kesimpta I will have no immune system to help keep a cold from turning to a sinus infection or pneumonia.

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