Lucky me!

Lucky me!

I’m one of the lucky ones with this disease. I wasn’t diagnosed till I was 42 which means I had 42 years of health. I was extremely healthy. I had never been in hospital, never had an operation, could count on one hand my colds and flu’s which I shook of easily. I didn’t suffer from headaches and considering my lifestyle wasn’t exactly text book health living, I considered myself fortunate. My GP didn’t even know who I was! RA hit me like a hammer. I got up one morning to go to a wedding that day, and I couldn’t weight bare on my feet. Literally could not put my feet on the ground without excruciating pain. I braved up and went to the wedding, full of pain killers and a husband who actually piggy backed me to the church and I spent the rest of the day sitting down. I suffered it for about a week then relented and went to see my GP. He immediately took blood test and a few days later called me to say that perhaps I should come in for a ”chat”. The words Rheumatoid Arthritis didn’t mean anything to me, apart from the word Arthritis and the association I immediately made with the old people I had nursed in nursing homes. But my GP looked concerned and a little upset at giving me this news, which made me sit up and listen. He gave me a quick lesson on this chronic disease, and as I sat there listening to him explain what I should expect and how there was no cure I felt he was talking about someone else. It will affect all my organs? I will need to be on strong medications daily for the rest of my life like perhaps cortisone and steroids and worst of all a low dose of chemo everyday. My immune system was in effect attacking my own body and would result in me suffering a lot of pain everyday, lose of function in everyday tasks, I may suffer from heart disease, lung disease, nerve loss, hair loss, chronic fatigue, brain fog…. and the list went on and on and on. Nine years later I feel I could have perhaps done without the initial warning as it took almost 2 years for my disease to really kick in. I had 2 years of relative normality. I was told I was in ”remission’ and I was lucky. I had occasional flares where the pain was unbearable but would only last 3-4 days and the injections for pain knocked me out so the memory of the flares is hazy. I was then started on the chemo meds he talked about and the steroids and cortisone were stopped. Once a week, either my mouth of slow infusion, you’re given a small dose of a drug that won’t cure you or help with pain, but will slow the deterioration process in your organs, bones and joints. That’s the theory! Whether that is true or not remains to be seen. Now, nine years after the day I couldn’t walk at my friends wedding, days like that are normal. Almost all of my GP’s predictions have occurred. I won’t list them, so boring. I never know what to expect when I get up. Some days I feel like my old self, other days I can’t face the walk to the bathroom and some days just disappear in a cloud of pain killers and pain. Chronic fatigue is the main concern I have, and not being able to sleep. Feeling like I have a bad flu all the time is so tiring and I have no energy or desire to do anything but lie down and wait to get better, but, it’s not like a flu, you don’t get better. I don’t look sick. A blessing some would say and I’m grateful (I suppose) but then again how can you expect your family and friends to help you when they only see me as I was, bubbly, healthy, vivacious and full of life! The old me! I’m tired of pretending but I don’t want to be that person who’s always complaining so I don’t. Some days I just cry inside and get on with the pretence, I’d rather be seen as my old self – it benefits no one telling them how I feel.

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