Rheumas of a pandemic
RHEUMATOID ARTHRITIS AND COVID
2020 has been a year to remember and forget. There’s been some major disruptions but also many gains. There have been a heck of a lot of negative things associated with 2020 but by the same token, there have been lots of positives that have come from the negative. 2020 was just one hell of a year and unfortunately it’s carrying over to 2021 but hopefully, there are better times ahead and we can only hope that some resemblance of normality will return! This article is going to go into rheumatoid arthritis and Covid. More so about how to live through it.
SUPPORT VS INFORMATION
As I’ve discovered in the support groups that I am a part of, views regarding rheumatoid arthritis and Covid is a contentious one. There are many of us that are worried and anxious about the virus as well as the vaccine. We are all worried about how severe Covid will be for us if we get it and what impacts the vaccine will have on those with rheumatic diseases and those taking modifying antirheumatic drugs for treatment. It is completely understandable and I get it! However, any concerns about the Coronavirus and how it will affect you, as well as the vaccine, should be directed to your rheumatologist. Advice from rheumatologists, as I’ve seen and heard, are also varied so seek advice from your own specialist because they know about YOU and YOUR medical conditions.
Some support groups will have members that are nurses and those that work in the medical field. Even then, it’s important to discern the difference between what is information and what is their opinion. As grateful as I am to nurses and those that work in health care, they are still not experts in epidemiology, medicine or rheumatology and I would consider carefully the medical advice they provide.
THOUGHTS ON THE VACCINE
Will I be getting the vaccine? I really don’t know. It’s a tough choice and I really don’t want to unless I have to. If it was required of me for employment or travel, then I probably would. It also depends on how Coronavirus disease control is being handled and the disease activity where you live. In Melbourne, where I am, we are faring better than most cities with only small outbreaks as opposed to say New York or London. If I was in a higher risk area living with inflammatory arthritis and had a compromised immune system, I would opt to get the vaccine.
The choice to get the Covid vaccine is personal and should be done in discussion with your rheumatologist. Don’t let people bully you into getting or not getting the vaccine unless you want to!The Rheuma Mill
The arthritis foundation as well as Creakyjoints have written very informative articles for chronic illness patients about the topic which I frequently post on The Rheuma Mill socials.
In my state of Victoria, citizens were locked down on 2 separate occasions for several weeks. This meant that we were not to leave our homes unless we were shopping for essential items or to work if we were deemed essential workers and an hour of exercise. If you could work or study from home, you had to do so. At one point, we were not to venture further than 5kms from home in order to prevent Covid infections to spread too widely. We were not allowed to have visitors or to even see family. When leaving our homes, we were also required to wear masks.
Face to face appointments with my rheumy were also replaced with telehealth appointments. This was really difficult and frustrating. My meds needed to be tweaked and it was really hard for my rheumy to SEE my condition. My bloodwork just wasn’t reflecting the slow downward spiral that I was feeling. I also had to pay normal fees for these shorter and somewhat useless appointments which, annoyed the heck out of me!
LIFE IN LOCKDOWN
For me as a special needs teacher, single mother of 3 and someone living with rheumatoid arthritis, I was riddled with anxiety and stress. Not being able to freely move and knowing that my compromised immune system put me at increased risk of severe Covid, my mental health really took a beating. When I ventured outdoors to buy food, the need for social distancing put me on the verge of panic attacks.
As the weeks went by however and I got myself into a rhythm, things started getting easier. Lockdown also provided some wonderful quality time with my children that I am really grateful for. I have always spent lots of time with my children but it wasn’t until lockdown that we actually did lots of stuff together for an extended period of time. Endless games of Monopoly, jigsaw puzzles and lots and lots and lots and lots of baking. Heck, we also rescued a dog! His name is Kylo and he is absolutely gorgeous but is still yet to win over the QUEEN – our cat, Mittens.
Professionally, I became a better teacher. I was forced to be creative and to really work collaboratively with my colleagues to offer support and learning opportunities to our school community.
Personally, I got to spend a lot of time taking care of me and tending to things that are important to me. I was also able to spend a lot of time working on The Rheuma Mill and take it to heights I never imagined.
My home state experienced one of the hardest Covid lockdowns in the world but we essentially eliminated Covid for a whole 2 months as a result. Consequently, restrictions slowly lifted and life went back to semi-normal. I returned to work, kids went back to school and businesses (those that survived) re-opened. It was also great to be able to take my kids to restaurants, we went to see movies and we even travelled domestically. I was ecstatic!
My body, however, was NOT. Living through rheumatoid arthritis AND covid was a bit too much.
Going from being a homebody for 6 months and then thrust back into work and play caused a major flare. URGH! The fatigue returned with a vengeance, as well as the inflammation. I struggled to walk and was slowly returning to being the Tin man. Luckily, my rheumy appointment wasn’t too far away. He put me back on a course of Prednisone and I am now back on Methotrexate. Until then, I had not needed it for several months **SIGH**.
During this time though, I still had to work. As a result, I just keep pushing and pushing and slowly crawling to the finish line (summer break). The flare got so unmanageable some days that I forced myself to take a few days off work to rest. Not that that did much. Actually, I rephrase. The rest was necessary but the effects of the rest did not last as long as I hoped it would.
By summer break, my flare had subsided and by Christmas-New Year, I was feeling a lot better. During my flare though, every aspect of my life was put on indefinitely hold. I used up all my spoons for work and to take care of my kids. I had no spoons to spare and I learnt to be okay with all that.
- to not exercise for long stretches of time if your body isn’t up to it.
- that cleaning just means vacuuming the spots you can visibly see as dirty.
- for your kids to have toast for dinner.
- to not brush your hair or wash it for a week.
- that the laundry can wait until you’ve nearly run out of clean clothes.
It’s okay to put yourself first.
It’s okay to just do the bare minimum, it won’t last forever.
Patience is not the ability to wait, but the ability to keep going while waiting.Bruce Lee
Patience is not passive. On the contrary, it is concentrated strength.
I don’t think I have ever switched off for this long before. 8 weeks is a long time for a break but I don’t regret a single moment. I needed it and I am now all the better for it.
Bring on 2021! I’m ready.
Share your 2020 rheumatoid arthritis and Covid experience with us now in the section below!