A day in the life of an RA Warrior
The strength of Rheumas
Lately I’ve been reflecting on how much life has changed since my rheumatoid arthritis diagnosis. Consequently, I’ve been thinking about the RA Warrior I am now.
This all started on Sunday night. I was standing at my kitchen counter doing what I now do every Sunday night: putting all my medication in my weekly pill boxes. I picked this particular box because it had 3 sections as I take meds 3 times a day. But most importantly, I got it because it was colorful. I thought it would make me feel better about having to fill my body with all these chemicals. Wishful thinking because it doesn’t make me feel good at all. Even just opening the lid of the flimsy plastic container is arduous. I start to get bitter before I even begin. I haven’t even reached the step where I have to wrestle all my pill boxes with their child-proof lids!
You’re probably wondering why I just don’t get the pharmacy to do it all for me. Pill packs would be a heck of a lot easier. Yes, yes it would. But that’s a service my grandmother used when she was living in a nursing home. I am 39 years old and less than a blink of an eye ago, was competing in martial arts competitions. I’m not going to resign to THAT just yet.
Stay with me
Before you think that this is going to be a bitter rant about my wretched disease, it is not. Just bear with me. It is in fact, an article about what it means to be an RA Warrior and what it’s like for those that are one. For those not in the know, that means a Rheumatoid Arthritis Warrior. In my humble opinion, anyone who suffers from rheumatoid disease is an R A Warrior. I think once you read this, you’ll agree too.
Fighting the same war
Although, my life is invariably different to a lot of others out there living with rheumatoid arthritis, our RA warrior stories will largely be the same. From those newly diagnosed to battle worn RAWarriors, from one fight warrior of RA to the the next warrior of RA, we fight the same war.
Anyways, back to the pill boxes. This article will go beyond the pill boxes. I promise. It’s just that the pill boxes represent so much. Pill boxes are a necessity for me. Without them, I would forget to take my meds. Or more specifically, so I can remember. I developed a habit of not remembering if I’d taken my medication or not. One day just blends into the next sometimes. Brain fog mixed with chronic pain mixed with fatigue will do that to you.
The pill boxes were also very helpful in the beginning of my journey. To go from not having to take any form of medication to now taking 16 different pills a day, which by the way, also changes from day to day. The whole thing was just overwhelming and mind boggling. This weekly Sunday ritual is the point in my week where I seem to say the most: ‘I can’t believe my life has come to THIS.’
No more pill box
After I’ve completed the pill box ritual (yes, I’m done with the pill boxes now), I put my children to bed. I can’t wait for the day to be over. I need to delete some hours. Sometimes sleep comes, sometimes it doesn’t. It’s really the luck of the draw. Some days, the fatigue is so bad, I delete a whole day if not days. This is not a good thing when you are a single mother of 3, work a full time job and run a rheumatoid arthritis blog.
My body is a temple… or is it?
As I lie in bed, I try to think of what I have accomplished that week. Sometimes it’s not very much because of the fatigue and/or pain. Other days, I have accomplished a fair bit. I know when I’ve accomplished a lot because my body is roaring at me. My hands are puffy, my knees refuse to bend, my back is aching and my right hip feels like it’s about to break. They say: ‘Your body is a temple.’ Yes, yes it is. It is an ancient and crumbling temple… of doom’. Some days, or even minutes (things can change in minutes), it’s not my hands, knees, back and hip. Some moments, it’s my eyes, my skin, my shoulder and ankle….. and then my other ankle. It’s a real circus.
The Tin Man
Mornings, regardless of whether or not I managed to sleep, is when my ‘temple’ is at it’s finest. Mornings is when I channel my inner Tin Man from The Wizard of Oz. Movement is hard and painful. If it’s a cold day, my Raynaud’s kicks in and makes things worse. By the time I’ve painstakingly used the toilet, brushed my teeth, gotten dressed (brushing my hair is tossed in the TOO HARD basket) and walked downstairs, I am beyond frustrated. Luckily, my children are old enough now to get themselves ready for school. As a mother, I still feel guilty and useless but I don’t dwell on it for too long. There is little I can do about it and I still have a full day’s work ahead of me. UGH!
By the time I start work, my joints have loosened up a little but I’ve used up so many spoons (in reference to the spoon theory), that I’m starting to fade. At 10am, I am ready for a nap but I fight through until noon. During my lunch break, I go to my car and have an essential sleep otherwise I will simply not make it through the day. Pre-RA, after work, I would go to my MMA gym and train for up to 3 hours. Not now though, now, I… you guessed it! Sleep! When I get home from work, I crash in the first comfortable place I can find until it’s time to get up and make dinner. If the kids have after school stuff on, I sleep in the car while I wait for them. Fatigue is the most annoying symptom of rheumatoid arthritis.
Survive to eat or eat to survive?
I used to look forward to dinner time. It wasn’t the cooking aspect I looked forward to but I LOVED the eating component. I was quite big on food before RA but now I’m big on RA food. I can only eat what doesn’t set my inflammation off, which I found out by doing an elimination diet. That means nothing with gluten and sugar predominately but I also avoid dairy and meat. It doesn’t sound like it leaves me with much does it? Having said that, RA hasn’t prevented me from eating delicious food. The food I eat is still good despite being packed with nutrition but I just don’t enjoy eating anymore. I eat so I can take my medication. My love for food evaporated with my diagnosis. This is probably more as a result of medication than anything else.
Take your meds people!
Medication to treat rheumatoid arthritis is a complicated business. There is quite a rigmarole to go through to find the right cocktail that will work. Not only do they have to work, they also have to not make you feel like you’re on death’s door. Along with medication, RA patients also have to take supplements to counteract some side effects, as well as giving back the vitamins that are depleted due to some medications. Regular blood tests are also necessary to check that your internal organs aren’t affected by medication, as well as eye tests with an opthalmologist. Just a word of advice for anyone going to the opthalmologist: bring someone with you to drive you home. My opthalmologist practically blinded me during the Plaquenil test. Jeez Louise! All this contributes to the stress that all RA warriors battle.
Looking after my mental health has been as important as looking after my body. Stress, anxiety and depression, once so foreign, is now part of my daily mindset. I won’t even mention what the global pandemic has done to my nerves!
Here comes the good part
Despite the jacked-up joints, the pain, the fatigue, the brain fog, the loneliness, the stress, the anxiety and the depression, I’m actually stronger than before. I’m not just talking physically but mentally as well. Anyone who battles this is strong. You have to be in order to endure and persist each and every day.
I never took my health for granted and being fit and strong were very important to me but for different reasons. The reason then seemed so trivial compared to the reasons now. Now, I appreciate my body for what it can do. Luckily, I’m still able to exercise but each squat, each push up and each step I take, means so much more. It’s not about looking good and ready to take down my opponent in the martial arts arena anymore. I now battle an invisible enemy called rheumatoid arthritis. Every day that I wake up, every step that I move, every spoon that I use, counts as a strike against this disease. For every article that I write in my ra warrior blog and for all the other rheumatoid arthritis blogs that I support, that’s another strike against our common opponent.
My R A blog along with other RA blogs all serve the same purpose. It’s us gathering all the other RA warriors out there, so together we can keep going. Knowing that we don’t fight alone, makes the fight easier. As each of us gathers together in our support groups, we’re strategizing and sharing our years of knowledge and experience towards one common goal: to keep living!
When warriors face a battle, some times things don’t always go to plan. Despite this, they don’t give up. They think of something else! As an RA warrior, I have adopted that same game plan. I’m still fighting but I now fight differently. I have replaced the things that I cannot do with the things I can do or I find a way to modify it. I am also doing things that I never thought I would ever do. From starting a blog and a small business, to writing e-books and articles. I have also made RA warrior fitness videos and educational RA animation. All these things, I never knew how to do but have since learnt how to. All these experiences, along with meeting new people from all over the world has really enriched my life.
A RAW army
My readerships extends to 42 countries and 5 continents including Egypt, Mauritius, USA, India, South Africa, UK and my home in Australia. We are a world-wide army of RA warriors. The daily battles we face unites us and we are stronger because we face it together. If you’re feeling alone in your fight then don’t. Put those compression gloves on, strap on that knee brace and keep fighting another day. You’ve got a pretty big army fighting alongside you and I think that’s pretty darn cool.
I’d love to round up the troops on this one. If you are an RA Warrior, leave your thoughts in the comment section below now!