Yesterday was World Arthritis Day. I only found out last night as I was scrolling through the whole of the internet before I went to sleep. (I know you do it too.) I think the very fact that this day doesn’t do the rounds on social media, like the other awareness days of late, is the reason I decided to write this post.
I do mention that I have Arthritis on the odd occasion, however, I have never really discussed it before. I’m very aware of people perceiving such posts as attention-seeking and I really don’t want to be labelled that way. The second reason is that I try to spend my life convincing myself and others that I am ‘normal’. I get embarrassed if anyone notices things that might make me different to everyone else. However, I am writing this post to help and inform others. To raise awareness of the different types of arthritis and to share my story for those that might be as confused and as scared as I was. Who knows, it might just shed a little light on an illness that causes a lot of anxiety to those experiencing it.
I Admit It. I Have Arthritis.
I have Inflammatory Arthritis. I said it. Most people are familiar with Osteoarthritis, which is inflammation and pain caused by wear and tear to the joints. Inflammatory Arthritis covers Rheumatoid Arthritis, Ankylosing Spondylitis, Psoriatic Arthritis and many others that are caused by your immune system. The body’s defences attack your own tissue, mainly joints, but also organs too, causing swelling pain and stiffness along with other symptoms.
Arthritis is a disease that I have always been familiar with. My Mum has chronic Rheumatoid Arthritis and was pretty much wheelchair bound from her early thirties. As a child, I was diagnosed with the juvenile version of the disease, and I was lucky that it went into complete remission by the time I hit my teens. So much so, that apart from some traumatic blood tests at the Crumlin Hospital in Dublin (I grew up in Ireland.), I don’t actually remember anything. It wasn’t until about 18 months ago that things started to change.
I thought the problem was too much gardening
We had not long moved house and I, as always, was being over enthusiastic about gardening, decorating and everything else in between. It’s who I am. I mean, It’s who I was. It started with stiffness in the mornings, a bit like when you’ve overdone it at the gym (Ha, Like I’ve ever been to the gym!), but all over. During the next few months, it got worse. Much worse. I had to go up and down the stairs like a toddler in slow motion, holding on for dear life. Mr SV changed my name in his phone to C3P0. (He thinks he’s hilarious.) I truly thought that what I was experiencing was the result of non-stop days. My limbs just wouldn’t do what they were supposed to do. I was also having terrible pain in my hips. It was keeping me awake at night and no end of hot baths and pain killers seemed to be able to ease it. The last thing that I noticed was tiredness. A tiredness that wouldn’t go away. My crazy days were slowing to short, sluggish days with endless naps and I still felt like I’d been up all night. This went on for about four months before I bit the bullet and went to see my GP.
She was a lovely Doctor who listened to me and sent me for blood test and a hand x-ray. Rheumatoid Arthritis usually starts in the small joints of the hands and or feet, so that’s the first place they check. The X-Ray and blood test came back as normal. I felt deflated. Was I imagining it?
For the next few months, the stiffness was getting worse. I was now having to lift my own legs into the shower one-by one. It wouldn’t do it on its own. Everytime I struggled, I thought about the ‘normal’ test result and I continued on. I found it really hard to stand from a sitting position too. It was a November morning when I creaked my way, very slowly, into the bathroom and I couldn’t squeeze my own toothpaste. My fingers were stuck and they wouldn’t grip or tighten around the tube. I had a good cry as I looked at the dry bristles and had to humiliate myself by going to ask Mr SV to do it for me. That moment, as silly as it sounds, is such a painful one. It forced me back to the GP, this time with Mr SV at my side, whose role was to convince my Doctor that I was not crazy, attention-seeking or a painkiller addict.
Finally, Some Help.
My GP agreed to refer me to a Rheumatologist. She felt I may be suffering from Fibromyalgia and sent me home with a carrier bag of anti-inflammatories, pain killers and muscle relaxants. The medication helped a little bit, and I was so grateful for that relief. Yet, things were still worsening. My Rheumatologist spent about half an hour asking about symptoms and family history and she put together a plan of action. I was sent for a hip x-ray and given a steroid injection into my bottom (Is that too much information?) to see if that helped things. It did. I walked much more normally in the mornings. I was still a bit stiff, but no more C3PO or toothpaste support required. It was just in time for Christmas too, which meant I could cook and clean and do all the things that just had to be given up if I was to keep going to work. The injection lasted about 5 weeks before it all started to come back. Bummer!
When my hip X-Ray came back, it showed definite damage to my hip joints. I was so happy. (I know it sounds weird.) I was happy that there was now proof that the disease was there. I was diagnosed with Sero-Negative Inflammatory Arthritis. Proper treatment could actually start. I’d be cured. I could go back to sawing down trees and decorating rooms in one day. It doesn’t quite work like that though.
I was started on one medication that didn’t really help and then moved on to Methotrexate, which is chemotherapy. It’s in lower doses than when used for Cancer. It’s not pleasant when you start and you do get side effects. The idea is that the chemotherapy suppresses your immune system to stop it attacking your tissue. It takes a few months to kick in and slowly things got easier, even if my knees, hands and feet were starting to show symptoms.
During the last year, things are improved. But life needed to change. The treatment for Inflammatory Arthritis doesn’t make it go away. It’s a disease that you work with. Sometimes, I barely notice any symptoms, or I can have periods of time when symptoms are hugely increased. These times can be triggered by stress, tiredness, overdoing things, even the weather can play a part. Sometimes, it just likes to remind me who’s boss around here. As much as I loved being a Teacher, it was almost impossible for me to do with my illness. Even going part-time gave me little control over my workload and stress levels, although I tried to hold on, I knew I had to find a new career. That’s not easy when you’ve been working at your career for a decade and don’t feel qualified to do anything else. But, you know, realising that my life and priorities had to change has improved my life for the better. In order for me to do my job to an acceptable standard. There was no wellness left for anything else.
I Take Better Care of Myself.
I take naps, I take time to unwind, and I make sure I eat breakfast, so I can take my medication. These simple changes have improved my life. It has literally made me stop and take a little time each day to make sure I do what I need to keep me healthy. I’m learning to be much more aware of my body and to say no, if I need to. This is such a change for me!
I Did Something Scary
I resigned from my post as a Teacher. That was really hard to do. Everyone moans about their job, but deep down, our jobs define and fulfill us. In the end, I realised my shoddy health wasn’t helping my pupils or my career and I took a leap. It was so sad to say goodbye and I miss so many aspects of that life. Going freelance was the best plan for me as it gives me complete and utter control over my days and weeks. I balance shoots with chair (or bed) based work, I can start a little later in the morning as I can schedule my appointments. I can work hospital visits around my clients and it really has been the best decision. I feel so much better and most of those that I work with would have no idea I have Arthritis. I miss my old life sometimes, but then, I’m writing this with a cat on my lap and that makes everything OK. Change is good, it creates chapters and Arthritis forced me to start a new chapter.
It Put a Camera Back In My Hand.
I trained in Photography during my degree. Up until this point I’d been passionate about snapping pictures and I felt certain that I’d love it. But, I didn’t. It bored me. Well, I loved creating the images with composition and being able to translate my technical understanding into achieving that. Problem was, that was less than thirty percent of the task. All that fiddling about in dark rooms and waiting about did not fulfill me in any way. I’m impatient. Digital SLRs had not yet found their way into Plymouth University. After training, I rarely picked up a camera. When my illness was particularly bad, I was off work and stuck in my bed or on the sofa. Stairs were a no-go and Mr SV had to make me my dinner. (You have no idea how traumatic that was for me. He enjoys pizza sandwiches.) I was feeling very frustrated and filled with self pity. (Not just about pizza sandwiches.) That’s when my brother came around with his spare camera and forced it into my hands. Being creative is like oxygen to me. It makes me happy. He knew it and urged me to pursue blogging and photography. I resisted, I moaned. He persisted and ran me through the newfangled technology and my life was changed forever. There was no dark room, the results were instant and I fell back in love with composition, light, colour and all things photography.
It Makes Me Appreciate What I Have.
I can squeeze my own toothpaste. I can go up and down stairs at a normal pace. Inflammatory Arthritis is generally considered a degenerative disease. It often gets worse. But you know what? It may not. None of us know what the future holds and everyday I am so appreciative of life’s simple joys and how lucky I am to have it so good. I have to limit what I do sometimes. I have to balance doing with resting. Yet, I have that choice and I’m so grateful for it.
It’s Made Me Closer To My Mum
My Mum has suffered so much and she is so unwell. Yet, with every step of her Arthritis journey she has been brave, strong and always smiled. You really can’t understand what someone else is going through until you’ve been there and although I always felt so sad for my Mum when her illness was flaring. I didn’t really understand. I couldn’t grasp why she was so tired. I mean how much do you need to sleep? Yet, now I’ve experienced just a fraction of what she has, we are closer than ever. I can’t think of a greater gift.
Yes, Arthritis comes at a cost and I can be thankful because in the grand Arthritis scheme, I’m lucky. Yet, today I am not focusing on the cancelled plans, the sleepless nights, the feelings of failure. Instead I am focusing on what I have gained. Because, I have gained so much. So, on this belated World Arthritis Day, I’d like to thank Arthritis for the parts of my life that have become so much richer.