Okay so it’s actually Day 90 but we wall know I can be a tad dramatic. It just feels that we are on day 5066. It was two months that hadn’t left the house until I got to see my rheumatologist. Of course, I did my hair and wore my new coat (where else was I going to wear it to?). Yes, all dolled up to see my doctor. PRISON BREAK!
Imagine not being out of the house for two months. TWO. Yes, we have a nice big terrace but that is no consolation for wanting to go shopping, going out to eat etc. We have moved down to Level 3 which means that they have relaxed some of the laws. Hairdressers, Salons took their case to court and they won. They are now allowed to operate. Alcohol can be sold again but cigarettes are still banned!
I remember the original lockdown where we only about a thousand infections? We were so vigilant. We currently have 106 000 infections and all of a sudden everyone is outside acting like nothing is happening. Living their best lives. Can someone please explain this logic to me because I cannot fathom that now that we are at 106 000 cases, with an average of about four thousand new infections a day and you are out having fun? No masks? Just out there – tone deaf. Schools have opened but some schools have offered online classes which keeps some of my babies safe. (Not biological!).
I seem to be living in a parallel universe, perhaps some other immunocompromised people will understand. Everyone is outside doing stuff. You can go to a restaurant; you can go for a massage. Not me. The levels and stupid laws have driven me crazy. After I read the news my face recognition on my phone doesn’t work because I clearly have an angry/sour face. For my mental health I’ve limited my news time. So, while everyone goes on their merry way I’m stuck, sat at home, watching people enjoying the reprieves they’ve been given. So yes, feeling a little bitter. I need to work on that. I’ve found that I’m needing to pay more attention to my mental health. Actively working on it to avoid a complete spiral because that is certainly on the cards. I did have a mini breakdown which was good because I had a damn good cry about it. I believe crying washes your soul.
Not only was I stuck at home… I was couch / bedridden! I’m in my fourth week of feeling like I’m dying. I know, it sounds dramatic, but I’ve been seriously ill. I called my rheumatologist and got an emergency appointment. I saw him on Monday. I was so freaked out about having to go to the hospital where his rooms are. Can you imagine? A cesspool of germs and possible Covid folk and me with a suppressed immune system. We figured out that the generic chemo that the pharmacist had given me (he was out of stock of the normal chemo tablets I take) was causing all the problems. When I say problems I mean, severe nausea, severe fatigue, tremors, inability to eat, blacking out.
I’ve also developed a bleeding problem with this specific chemo. My physiotherapist was so alarmed, granted it was 23 needles, but I never bleed when I have dry needling but here, I was bleeding. Nurses have a tough time because when they get that vein for the IV it starts gushing blood. Try taking blood from me and it takes ages for me to stop bleeding.
As always, he did a full assessment. I haven’t been able to eat because of the nausea, I couldn’t even cook because the smell made me nauseous. My hip is a complete mess and the pain is excruciating. So, the plan is that I have to go for blood tests (eeek a lab). I checked the form… a plethora of tests! Obviously also checking my liver and kidneys and then I also have to go for an x-ray on both hips. Lord help me. We will be changing the chemo. Oh Lord. Adjusting to new chemo is brutal.
The blood tests were fasting ones, like having to eat nothing because you are going for an op. I get there, and the lab tech asks when I last had a meal. I tell her. She counts the hours. 17 hours! Nope, they cannot do the test because I fasted too long. So, come back today. I get there today and again I’ve fasted for too long. It was 12 hours. I have to figure out a way to get there when I’ve fasted between 8 – 10 hours. Epic fail. I’m an epic dunce. Going to the lab freaks me out because obviously people are coming for THEEE test there too. So, let’s hope I get it together tomorrow! I then also have to go to the hospital to have the x-ray on my hips done. He changed some of my meds and added others. I’ve also developed a terrible ulcer that is keeping me from having coffee! Coffee is my elixir! I’m a complete coffee addict. So now that’s been taken away as well as anything spicy. Thanks, I need more restrictions … not!
Tests will be done; rheumatologist will get the results and then we will take it from there. Fun times, fun times. Adjusting to new meds can be brutal but hey I have a lot of time on my hands to deal with the side effects. I just want to feel normal. I’m not asking to feel great; I’m just asking to feel okay. I don’t think I even remember what it feels like to just feel okay. Is that asking for too much?
I have decided to go for Craniosacral therapy. Here is a quick explanation. I have so much pain and pressure in my neck it’s unreal.
A dear friend has gone for this and I thought “Let me give this a try”. So, I have an appointment on Friday which I will write a review of how it works and if I got any relief. I am also having an “Energy Healing” session on Friday with an Energy Healer who comes highly recommended. Can you see my desperation? I will do annnnything, okay almost anything, to get relief. The pain clinic doubled my oxycodone and added a really high dose of this medication I hate. It helps but it makes you pick up weight, even when you’re not eating. How unfair is that! I call BS. Unfortunately, all the procedures the Professor had planned for me is on hold because we can’t do any procedures in theatre yet.
Everyday feels like Groundhog Day. I’m so excited to get out on Friday and get to see things. Things other than what is in my house! Even though I’m just going to her practice rooms it’s a different setting. Things for me to look at and take in. Sensory stimulation. It’s really needed right now. I feel like a total weirdo. Like a shut in. When you let me out, I’m staring at everything, smelling and touching everything, just taking it in because I am damn tired of just looking at the same crap for 2 months.
Chronic Illnesses are hard you guys. It’s a literal battle every day. I have severe vasovagal synoscopes. Here is a quick explanation.
This is another issue that needs to be sorted out. I even get triggered by heat so, I was cooking on our gas stove and fell down and blacked out. That really scared me. This is another issue we need to get under control. I cannot be blacking out all the time. It’s dangerous.
I’m sorry for the long rant, but you know, I don’t get out much 😊 Thank you for taking the time to read this blog. I really appreciate it. It’s like a little support group for me. It really helps. I will get better again. I’ve done it before but am I up for the battle? It takes so much out of you. The alternative is not doing anything and ending up really ill in hospital or dead. Winter has brought about excruciating pain. I wouldn’t wish it on my worst enemy…. Or maybe I would 😉 😊
Thanks again for reading about my woes. I promise there are some interesting blogs coming and an announcement coming soon!