I wrote this on the 27th November and honestly? I wasn’t going to post it, but I saw a girl mention on TikTok how she felt safer in a hospital than at home. It made me realise that this post is important, if not the most important one that I’ve written yet. I was uncomfortable with it, but that’s the reason it is so important. Because it’s the part of this condition I don’t really share, with anyone! Not even my fiancé. It’s the absolute pure terror that it can induce. It’s the honest account of how bad one of my flare ups can be. This isn’t the worst I’ve ever had, but it’s close. I do need to say there wasn’t much pain involved in this flare, that usually comes afterwards in the weeks after. No, this was the absolute terror that my chronic illness causes. It sounds dramatic, but it’s the truth. Why didn’t I tell anyone? Why didn’t I phone a medical professional? What could I have told them? That I’m someone with a chronic illness who felt unwell? Hospitals near me are already overloaded, as someone in care I’ve had to fight to get residents to be taken in. They would never have took me. I was alone.
Today, I pushed through my exhaustion to have a day with my fiancé. I have to go to my new jobs office on Monday and part of me wanted to prove to myself that I could push through it, and I did! I was proud when I managed to shower (still haven’t washed my hair for nearly two weeks - Gross! Sorry! Been using dry shampoo). I was proud when I managed to put on some make up! I even managed to unload the dishwasher and cook some food at the hob when we got home (albeit I had to sit on a stool whilst I chopped the veg and fried them). Then I managed to clean my cats litter tray and watch a programme with my fiancé! I was so proud of myself.
Now I’ve had my bath (which helps release my muscles and alongside it my pain and fatigue) and I’m lying in bed and I’m trying not to cry. I don’t know if you’ve ever been so unwell that you’re not sure you’re going to wake up the next morning, but that’s how I feel. And now I understood all my late nights and issues with sleeping during my flares. It’s never that I’m not tired or can’t go to sleep. It’s that I’m terrified I won’t wake up in the morning. I think I’ll ring my doctor and get an appointment on Monday for when I get home after being at the office. I can’t describe it, I’ve got no headache, I’m past the point of tired, my breathing and heart rate are fine. But honestly? I don’t know how to describe it to someone other than I’m terrified to go to sleep. Which is ridiculous because that’s what my body needs. I can’t tell anyone this, I’m scared they will freak out and I’ve had to date this post as I will probably never post it. I may show a medical professional but until then I won’t be posting it. I often say that Loki although not trained is often my support animal (more emotionally than anything). I originally thought he got more aggressive because he was picking up on my anxiety, and I think he does do that. But I think he’s also biting me before my flare ups. Which makes me wonder if he’s detecting something that I’m not. A friend of mine suggested to do my blood pressure when my tremor happens, it isn’t right now but I might take it to see while I’m feeling so ill. I wouldn’t want to take it when I’m inactive or resting which is why I’ve never took it when I have my tremor. But I’ve had a fairly active day so I might see. It’s currently 10:10pm. Fitbit heart rate; 73
Blood pressure 140/86 pulse 69 this is a little high for me it’s usually around 125/130 but at the same time it’s cold and I’m cold so it’s not overly concerning. (I should note that this is not a medical diagnosis abs I DO NOT recommend this course of action for anyone else!! If your blood pressure is EVER 140/90 -as stated on the NHS Website- PLEASE contact 999/111 IMMEDIATELY!!!!)
It terrifies me though, there are days where I push myself and I think “this may be the last time I’m able to push myself this far, ever. I may not be able to do this again.“ not because I think I might get worse but because sometimes that’s how it feels when I’m walking around a shop, my body screaming at me to sit down. getting dizzy or out of breath. I have days or periods where I feel like I’m getting better and days where I can see myself falling down a hole I may not be able to get out of.
Every day I force myself out of bed, to pretend to be normal. Chronic Illness is not glamorous. It’s crying and confessing to your fiancé that I have a cupboard full of moldy mugs with tea bags in because I was unable to take them downstairs for nearly two weeks. It’s needing the toilet and not being able to move from the sofa no matter how hungry you are (because you have not eaten for 7hrs due to being stuck on the sofa) or how much your bladder causes you pain because you need to go. It’s staring at the ceiling for hours of your life fighting to remain conscious because looking at your phone or watching TV or reading or doing anything at all is too much for your brain. It’s sitting at the counter, your knife feeling like led even though you have good muscles and are perfectly capable of picking it up, but in that moment it feels like lifting a giant bolder with one arm. It’s accepting that once you go to the toilet and get up, you have no chance of going up those stairs. Accepting that as much as you’d rather lay in bed and your body needs you to, you couldn’t crawl up those stairs if your life depended on it.
It is crying to your significant other or close friends or family with embarrassment you haven’t been able to wash your hair in weeks or clean your house in 3 months. It’s having laundry piles so high you’re not even sure why you have a wardrobe anymore because you can’t find the energy to hang your clothes up or put them away. You’re lucky if you manage to even get them in the washing machine to wash them!
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