In April 2017 I was diagnosed with Rheumatoid Arthritis. It happened only days after my mother in law passed away, and at the same time my sister had a stroke. I was also still recovering from an eye operation, so as you can understand it wasn’t a great time for me.
I had a choice though, would I sit down and be a victim or would I just get up and fight? I chose for the second option even though I knew it was a fight I wasn’t really going to win, at least not in the short term.
But before I continue let me first give a brief explanation what Rheumatoid Arthritis is.
Rheumatoid arthritis is a condition that causes pain and swelling in the joints. Hands, feet and wrists are commonly affected, but it can also damage other parts of the body. Rheumatoid arthritis can make your joints feel stiff and can leave you feeling generally unwell and tired. It is most common between the ages of 40 and 70, but it can affect people of any age, and occurs more frequently in women than men.
What causes it?
The exact cause of rheumatoid arthritis is unknown. It is not clear what triggers the initial attack. Some theories suggest that an infection or a virus may trigger rheumatoid arthritis, but none of these theories has been proven. In my case I believe it was caused by trauma, because prior to the aforementioned traumatic events I also had to deal with the death of my brother in law which happened only 6 months, prior to that. The death of my father in 2015 and the fact that I had already lost one eye in 2011, and was facing a potential loss of the other eye(luckily that didn’t happen) so I think the accumulation of all these things triggered the unset of my Rheumatoid Arthritis, but that is only based on my presumptions not on science.
Rheumatoid Arthritis is an autoimmune disease. This is when your immune system, which usually fights infection, attacks the cells that line your joints, making them swollen, stiff and painful. Over time, this can damage the joint itself, the cartilage and nearby bone. Basically an autoimmune disease is when the body’s natural defense system can’t tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells.
So what does this all mean to me?
To me it means that I am in pain every day of my life. Does this mean my life isn’t worth living? Of course it doesn’t because despite the pain I still consider myself lucky. I am still alive and the pain reminds me of that. Furthermore I still live a reasonable normal life. Luckily I was diagnosed in the early stages of the disease, and the Rheumatologist was able to come up with a treatment which would halt or significantly slow down the progression of the disease. Prior to his consultation the Medical Assessment Unit on St. John’s hospital had put me on a high dose of prednisolone steroids tablets to ease the pain. I was in severe pain, I couldn’t move my arms and my left knee felt like it was shot and someone was constantly poking it with a knife(this is no exaggeration). When the Rheumatologist assessed me he told me that I needed to get of the steroids, because they were masking the symptoms. In order for him to set a correct diagnosis I had to suffer a bit more. When he eventually confirmed it was Rheumatoid Arthritis he put me on a cocktail of medicines.
- Methotrexate (MTX), formerly known as amethopterin, which is a chemotherapy agent and immune-system suppressant. They are small yellow pills. Which I take once a week
- Humira: Humira belongs to a class of biologic medicines known as TNF( tumor necrosis factor) blockers. It specifically binds to TNF and blocks it from acting within the body. It is an injection which I take every fortnight.
In order to reduce the need for additional pain killers , I decided to follow a course called Living Well with Arthritis and Related Conditions, which was designed by Stanford University ,California USA. The course was brought to my attention by course leader/tutor who also happened to be a cousin of my wife.
The course ran over 6 weeks and focuses on self managing the condition by a variety of tools like, physical activity, making action plans, distraction.
Although I was already doing a lot of the things covered by the course. I still found it very beneficial. One of the main benefits for me was that the fact I was there with people who were in the same situation as I was.
There was no need explaining how I felt, they just knew. One of the frustrating things for anyone living with a chronic diseases is that their family and friends don’t understand what that means, they just couldn’t understand, I look externally like a fit and healthy man.
The course benefitted me so much that I now have become a course leader/tutor myself and not only for Arthritis but also for other chronic diseases.
There is no cure for Rheumatoid Arthritis as of yet, and we don’t even know if there ever will be one. But that shouldn’t scare us, we just have to deal with the illness as good as we can , working together with healthcare providers and organisations who deal with Arthritis. For me that is Arthritis Ireland.
As I stated in the title that is a war, it truly is. Sometimes you fight battles on a battlefield other times it is like conducting guerilla warfare, My weapons are the medicines, the living will tools and constantly educating myself. Not listening to those who sometimes have bizarre conspiracies about the treatment and try to convince people about unproven alternative treatments. They are akin to the collaborators of the enemy, in my case Rheumatoid Arthritis.
Sometimes people think that it is unfair they contracted Rheumatoid Arthritis, and maybe that is true, but life isn’t always fair not isn’t it always meant to be easy. It was meant to be challenging and that is what makes it interesting. There is nothing more boring then traveling over a smooth surface all the time, you need the off obstacle.
The Covid 19 pandemic has not made things easier but it has created a few opportunities which weren’t there before. The aforementioned living well courses are now available on line, so you can do them from the comfort of your own home.
My latest battle is the Covid 19 vaccination, which I will get in the next few days, but this means I have to stop taking my medication 2 weeks prior and 2 weeks after the vaccination, which does cause me a little bit more discomfort. However in the greater scheme of things it is a sacrifice I gladly make.
Living with Rheumatoid Arthritis is a war but at the moment I am winning.
From April 12 to April 18 it is the National Arthritis week in Ireland. Please support the organisations who deal with Arthritis wherever you are. The research is not cheap. The science has come a far way, until recently Rheumatoid Arthritis was a severely crippling disease.
I am not asking you for donations here . I just want to raise awareness. Having that said, donations are always welcome.