February 13, 2014 § Leave a comment
This is my first post on this blog, which I have started to share with people what it’s like to live with rheumatoid arthritis as well as provide support and advice to others with it and other autoimmune conditions.
I’m 22 years old and live in the UK. I’ve recently finished uni and am living at home with my parents again while starting work part-time. The amount I can work is limited with my condition, but I’m glad I’m able to work at all.
Check out my about page for the story of how this all started just under two years ago. It already feels like a long time since I was diagnosed, and yet I am still on a long journey of acceptance and adapting my life to suit the disease.
Rheumatoid arthritis is different to ‘wear and tear’ arthritis (osteoarthritis). It can occur at any age and for no particular reason. I started getting symptoms at 20 years old, but juvenile arthritis can start much earlier. It’s an autoimmune condition, which means that the immune system of a person’s body, which usually fights bacteria and infections, launches an attack on its own cells and primarily the joints. Symptoms include joint pain, swelling and limited movement and fatigue.
Treatment aims to manage symptoms and also restrict the activity of the disease with immune suppressing drugs. The inflammation and immune cells damage the cartilage and bone of joints, which can lead to permanent disability and the need for joint replacements. The inflammation can also affect any tissue in the body, including organs and the eyes. A terrifying reality I faced when a routine check recently picked up blood in my urine, indicating kidney inflammation. A more aggressive treatment for a few weeks helped, but it brought home how serious this disease is. It’s not just ‘aches and pains’. Patients tend to go through lots of treatment regimes in order to find an effective one, aiming for a period of ‘remission’. So far I haven’t reached this stage and I’m slowly working through the groups of DMARDs (disease modifying anti-rheumatic drugs, the immune suppressors)
Emotionally this is a very difficult process to go through. When I was first experiencing symptoms it was very scary, the worst things tend to go through your mind in situations like that. Then when you’re told you have rheumatoid arthritis, a lifelong disease which could potentially leave you physically disabled or take your life, it’s a lot to process. In one thought, I was glad to have a diagnosis and reason behind all my pain. In another thought, I know I’d much rather have something temporary!
I’ve been making efforts to speed up my acceptance of having this condition. Recently I’ve begun counselling because I’m not very good at opening up to people about my condition. I always feel it will push them away or sound like a call for sympathy. This is something I’m hoping to work on through this blog. I have also identified a cycle I tend to go through. I start by feeling as if I’m coping well, then realising I’m just suppressing my feelings, then start to feel overwhelmed as I process them so I head back to my coping mechanism of suppressing! I’m sure it will just take time to break the cycle or work my way into a productive one
My main symptoms are pain and swelling in the ankles, wrists and elbows. I also have a lot of pain throughout my spine and sacroiliac joints, which is undiagnosed but undergoing testing. The fatigue I get is quite severe and I find I have to monitor my activities a lot. I work 3 days a week and on my days off I spend most of my time resting. I can be quite unreliable with socialising because I may wake up on the day with severe fatigue and pain and can’t make it. Planning ahead is impossible and that’s something that frustrates me a lot!
I’ve tried various medications so far, the DMARDs have been hydroxychloroquine, methotrexate tablets and methotrexate injections. The side effects were too serious for these so I’ve moved onto leflunomide. It’s been 7 weeks now so I should start to see some response from it now, if I’m going to. The other medications I’m on is:
- Naproxen (anti-inflammatories)
- Omeprazole to protect my stomach from the naproxen
- Cocodamol and tramadol as needed for pain relief
- Amitriptyline to try and help me sleep through the back pain
Rheumatoid arthritis isn’t just a chronic illness, it’s also an invisible illness. Sometimes a blessing, sometimes a curse, the only way people can tell I have a condition is if I wear joint braces or they spot the bags under my eyes, the frequent yawns, the occasional wince of pain or the careful and often slow movements.
I hope that my blog will be helpful for people who don’t experience a chronic or invisible illness to learn what it’s like. I also hope that I can provide support and information for people in a similar situation to myself. I welcome feedback or messages through the comments below or feel free to email me at firstname.lastname@example.org
Keep well, Z x