My Lupus acted up like crazy after the whole sleep study thing so as you know, they doubled my immunosuppressants (chemo tablets I take every day). It started off okay in the beginning. I had energy and was able to cook up a storm and get into deep cleaning and working on ideas for my upcoming vlog (More about this later!)
I even started doing make-up tutorials for my nieces. They wanted mermaid looks, Barbie looks… you know. They even got me to do a fashion show lol! Slowly this unreal nausea started. I have really strong anti-nausea medication because of the chemo meds, and I took double but it did nothing. I couldn’t function with this nausea. I then started feeling my energy waning, slow but surely it got worse and worse.
I suffer from Covid Guilt, as I’ve named it. I feel like how can go running to my rheumatologist because something feels really wrong when people are dying of Covid. What if he puts me in hospital? That means taking up a hospital bed. Also being really, exposed to Covid in hospital. I feel bad for being sick. This is a lifetime disease. I told myself to suck it up. I set goals for myself to achieve. Like trying to get as much steps in on our terrace, as well as using resistance bands on my thighs while I’m watching t.v. but that came to end because I physically couldn’t do it.
I’ve become so weak and so ill. I can’t eat, I have zero energy, I run fevers, I can’t cook up a storm like I used to. Everything is so hard to do. I literally have to push through to do the smallest thing. I’ve tried everything I can to take my mind off it, but I’ve gotten to a point where none of this is going to work and I need to seek medical attention. Previously when I was on a high dose of the chemo daily, it built up in my system and caused toxicity. My body went completely crazy. The problem is it can cause damage to your kidneys and liver. I have a standard liver and kidney test every three months because of this. Now, I’m overdue for one, especially to check the effect of the new levels of immunosuppressants. Lupus affects EVERYTHING, so ANYTHING can be wrong. One thing is for sure, something is wrong.
I just need to talk myself into it. I felt like I had to share this heavy feeling I was carrying. I feel so guilty seeking help when people are dying of Covid and there are so many infections. Who am I to come with a disease I battle my whole life? Suck it up buttercup.
I have sucked it up but now I’m couch ridden. I can’t do anything but attend to my sore muscles because let’s not forget, I’m also having a fibromyalgia flare. Even trying to reach for something on the coffee table is so hard. I am so weak. Still, my Covid Guilt says you are putting a strain the hospital system. There are people who have Covid and they need all the help they can get. No doubt I am going to need blood tests taken. They should be focussing on Covid testing at labs as a priority so where do I come with my blood tests??? But the reality for me is if something is going wrong and they don’t catch it I could die. That’s what’s making me think it’s time. I tried everything, including going for lymph drainage in a space suit, extra vitamins.
At the same time, I am dealing with extreme neck and lower back pain that is also leaving me unable to do much because I am so stiff. I do some yoga stretches and I spend all day rubbing my muscles and applying heat. My day is taken up by trying to make myself feel a little better.
The one thing I can do while couch ridden is blog. This gives me some reprieve. I’ve gone quiet because it’s hard to have a conversation and engage with people. I just feel too ill. When I get little spurts of energy I do as much as I can.
All I can say is, I haven’t been speaking about how ill I really am or my grief because I feel that the world has more pressing issues. But I’m telling you now… I am not well. Physically and mentally. Send prayers, positive energies all that good stuff my way please.
I promise I will get to my rheumatologist because right now I’m not living I’m just existing and it’s awful. Covid Guilt is so real in my life. Then I remind myself, I said the world still turns, people still get sick, still get cancer. So really, I should be taking my own advice. Damn, I never listen to my advice. Full on Homer Simpson “DOH”…
2 thoughts on “Chronic Illness, Covid Guilt and some Quick Facts”
I have read this blog(?) and agree totally. I am a brittle diabetic. I have kidney function damage and have compromised feeling in both legs. I also suffer with PTSD and wearing a mask triggers really bad things. Then there is Back pain etc. I continue to suck it up because my friends just don’t get it. I get angry and I get depressed but I live for a simple thing like being able to laugh at a rerun of an old sit com. Everything will be all right I just don’t know when Hang in there and breathe as deeply as you can.
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Thank you Carole. This post means so much. Thank for taking the time to remind me that I am not alone… I’m sick and tired of being sick and tired at this point.
I wish I could partake in lockdown but I’m just too sick. Couch / bedridden. I pray for just a few good hours a day.
At this point it’s gotten so bad I can’t do anything …like cook or the other stuff that kept me going in the first 2 weeks of lockdown. Thank you for reading my blog. Share if you think anyone else could benefit
Gentle hugs! 💜