RA my best friend I love to hate
Most people have a plan, if not an idea as to what they want to see and do in their future, but to try and achieve their goals and dreams with a chronic illness isn’t on the top of their mind.
I’m 28 years old and being diagnosed with Rheumatoid Arthritis (RA) didn’t make me stop and think about the future, instead I stopped and thought of all the things I wished I did while I was still capable to do.
I first got the pain in my shoulder and didn’t think anything of it but thought it was due to me playing my guitar for too long, a few months down the track I had pains in both my knees, thinking that it was just pulled tendons after playing on the trampoline with my nephew, I followed through on the R.I.C.E process, then slowly the pain crept up in my left shoulder and across my cervical spine and then into my elbows. I knew that there was something going on in my body. I’m not a fanatic about going to the doctor, I usually pop up in the Doc’s office when I know there is something definitely wrong with me, why my doctor tends to worry when he does see me. While I sat there and explained to him the problems he immediately followed through for me to get a number of tests, once all the test were done and he received the results he strongly urged for a review by a rheumatologist. After a full hour and a half of being examined head to toe and more tests the final results came in, “you have rheumatoid arthritis” I smiled when I heard this and said “that’s great so you know what the problem is, fix me up Doc!”
I didn’t even know what RA was or that it even existed, the more the specialist talked to me about it the more pale my face went and my stomach started to turn. I started to dig around and ask questions back tracking into the family history as much as I could but it was hard to find the answers I was looking for, in the end I settled with I didn’t cause it and I didn’t choose it.
I limp when I walk and struggle to walk long distances without having pains in my knees and when I am at work sitting behind my desk it’s difficult to pull myself up from the chair. I have pain dressing myself, brushing my hair and walking up and down the stairs. The simplest things are becoming difficult to manage on a daily basis.
I have always been someone who tries to look at things from a more positive and funny perspective but have to admit there are times when I feel like pulling my hair out and screaming like a five year old child having a tantrum because it’s just so annoying and frustrating.
My first trip to the hospital for RA was scary I was nervous and anxious. After waiting for almost 4 hours to see the emergency doctor on duty I started thinking that there where many more moments like this to come and started to stress a little more. I got lucky this time around though, as the doctor that I saw was young, knowledgeable and empathized with me she actually had an understanding of what I was going through. I haven’t had the RA life for long, but it felt great to have someone that understood what I was going through rather than me repeating the story over and over again about what the pain is like.
I find that one of the frustrating things of having RA is when you tell people about the condition they seem to only hear “Arthritis” and generally think it’s not a big deal or their response is “oh I have that” or someone they know, when they really don’t know what RA is and have no idea the hardship that is involved. I always want to respond with “Do you have difficulty getting up in the morning and walking to your toilet? Can you dress yourself? Do you limp when you walk? Do you cry at night from the pain and the lack of sleep?” I’m sorry that you may think you have rheumatoid arthritis but if your doctor hasn’t prescribed chemotherapy for you arthritis then I highly doubt we have the same thing.
At the beginning I wasn’t open with anyone about my condition, as it started to sink in more and more that this is real and it isn’t going away, I actually said to myself RA I don’t like you and you don’t like me but we now have to live our lives together, where I go you go, we’re going to have to learn to be best friends.
I then thought of my job. I have been with the company for 8 years, I love my job it is my passion but also my biggest fear that if things get to the stage of being too difficult that I would have to give it up. First thing was first, I rang and spoke to my boss gave him an update on everything going on and it was the best thing I have done. As we were discussing things I was telling him all of these adventures plans I had wanted to complete and achieve and felt that I had to give it all up, he was so understanding, supporting and inspiring and gave me the best advice, “You can’t withdraw if you haven’t deposited and that the mind is stronger than the body”. This saved me from falling into the black hole of depression; it made sense I have to put the effort in as a result to get out what I want. I can only make my goals achievable if I actually do something about it, if I decide to sit around and let RA take over then nothing will happen.
With the support of my brother, sister in-law, best friend and the rest of my family and friends, I have since hiked Mount Kosciuszko and Charlotte’s Pass, spent two days walking in the fields cherry picking and am flying with my best friend to do a USA tour with a ski trip planned for this winter. I don’t care how much pain my RA raises I’m knocking out these goals and any others that follow.
Slowly I’m learning how to cope and have fun with RA. My 90 year old grandmother and I have walking races, sometimes she actually wins. For some bizarre reason doing tiny funny moments like these hold things into place.
It’s a known fact that the bone erosion and deformity is underway and the pain and tiredness is now a constant way of life for me, not knowing what this chronic illness is to bring in the future scares me, but for now RA is the best friend I love to hate. So here we go on the new journey.