I’ve had Rheumatoid Arthritis since I was twenty four years old. I had just given birth to my first child when I knew that something wasn’t right. The pain was just there, a dull ache that never seemed to leave. First it started in my lower back, then it spread to other places. The doctors were kind of useless at the time, so there wasn’t a lot I could do about it.
When Shaun was five months old my husband caught the chicken pox (John had never had the chicken pox before, because he had been brought up in South Africa, where it seemed children didn’t catch these things,) and so Shaun caught the chicken pox as well. I remember feeling pretty well defeated in life at that point. The three of us were sick in bed. John lost his job at the time, and taking care of a baby as well as everything else was not the easiest of things to do.
Luckily, or not so lucky some would say, I woke up one morning to find that my right ankle had swollen to double its usual size. I say lucky, because now I had some physical evidence that something wasn’t right. At last the doctors listened to what I was trying to tell them, so they took a hefty three tubes of my blood to find out what was wrong. I just couldn’t work out why they hadn’t done this months ago. The results came back with the news that I had Rheumatoid Arthritis. The doctors were full of apologies to me, since I had been right all along. I wasn’t just imagining pain, and I hadn’t made anything up. Previously the Doctors believed that I had fallen over on my ankle causing it to swell up like a balloon. They looked at me accusingly, as if I could just forget doing that to myself. I think they felt so bad for not taking the tests in the first place that they came around to our flat to make sure I was ok. They told me I was to go to see a specialist in the Rheumatology department in a hospital that doesn’t even exist any more. If my memory serves me right, I was nearly on the verge of staying overnight, but luckily they knew I didn’t want to be apart from my baby or John, so I was treated as an out-patient instead. On the whole, doctor’s and hospitals are never my favourite things in the world. My mind immediately thinks of the worse case scenario and I’m put into a state of panic just thinking about it. I’ve still got this issue today, rightly or wrongly so.
This was all a long time ago, a life-time really, and it was the start of a never-ending road to taking prescription drugs that would only get stronger and stronger as time moved on.
I’ve been on Indometacin since I was first diagnosed with Arthritis and nowadays I can add methotrexate to the mix as well. When I first started using the indometacin it used to knock me completely out. Now, it doesn’t seem to do anything, although it might be, I just can’t tell any more. But for sure, I’m completely used to it now, and I only take it once a day, which is good. At certain points in my life I have taken fifty milligrams up to three times a day. This was when the arthritis gets out of control and usually my joints have been inflamed also. The indometacin is from the NSAID family of drugs, which means something I’m sure. If you read all the contra-indications attached to taking this drug, most people would be put off using it at all, let alone a person who is cynical and nervous about chemicals going into her body like I am. Mind you I was in a lot of pain, so I chose not to read all the information about all the bad stuff attached to the medicines. The pain overtook all of my ideals about drugs, and it still does to this day. The conclusion is, I take them, they control the pain, and I just try my best to ignore the rest. My niggling doubt is always in the back of my mind though, it never goes away.
Along with the drugs I also had to get cortisone injections into the various swollen areas where they had to first of all extract the fluids with a large syringe. This happened a few times to me, once to each of my knees, and my heels also. My two wrists have been done as well and each of my shoulders. This was a few years ago now, and I haven’t been in an unstable condition for a while, which is good. I am not going to say the injections weren’t sore, because they were. But the thing is, the pain was acute in the first place. And to be honest, it did work for me, so at least that was another good thing.
I wasn’t able to be the same person I was before the disease. The prognosis took me a long time to get over. I knew I couldn’t do the things that I had been able to do before and that sounds like a simple thing, but of course it isn’t. Along with knowledge of the disease comes a depression that has come and gone throughout my life. Is the depression all linked to my arthritis? Or is the depression part of who I am? I don’t know the exact answer to that question, maybe it’s a bit of both. This is all just a part of who I am now.
The thing is, I have seen children who have this disease and that’s when my own illness is put into a better perspective. I feel humbled by these kids, and rather ashamed of my own aches and pains.
I think I cope better living from day to day by ignoring the disease to the best of my abilities. Of course its always there and every winter is another reminder. Time doesn’t go away and every year the disease seems to get worse the older I get. But for me, I try and cope by taking my medicine and I don’t dwell on the negative stuff. I think I’m very lucky anyway, I can stay in bed for longer every morning if I have to. I can take my time to get ready and my illness can be accommodated around my business and life. This wouldn’t be possible if it wasn’t for George my business partner, and of course my husband John. In many ways, they have lived through the ups and downs of this disease as well.
A week ago, George saw a Sky news report for a cure for arthritis that had been carried out in Holland. He was very excited telling me about this cure because the people who had been on the trial had been completely cured and were not taking any medicine any more. I looked into the news article but unfortunately found out that the top Rheumatologist who founded the cure in Holland was now working for Glaxo-Kline furthering his research. So, the news was still good, but perhaps not for just now.
I know that I’m luckier than most, I’ve been very fortunate in life. But still… this damn disease hasn’t half changed my life. The best way to describe living with arthritis is that you wake up every morning and go to bed every evening feeling like you have the flu. Sometimes the flu feeling feels bearable and at other times its not bearable at all. So, getting out of bed every day can be a challenge in itself. These simple things that we take for granted can be harder for people like myself.
Staying strong and mentally positive is another challenge because the depression of having this disease and all its limitations lurks around the corner at all times. But lets face it, its not the worst thing that can happen in life… not by a long shot.