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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Jan
    4 years ago

    I missed this on the blog but just read it on Facebook. I can so relate to your thoughts and feelings. I was diagnosed at age 30 after 2 years of symptoms. Even though I’m an RN I didn’t “get it”. And even now, I realize no one who hasn’t walked the walk gets it. But I too am sick and tired of pretending. But neither do I want to be viewed as a complainer. It’s difficult to walk that fine line when you have an “invisible illness”. When I’m at my worst I isolate myself so no one sees. And if I have to go out or be around others I put on my happy face and pretend. I’m sick of it and now think I’ve set myself up for misunderstandings by always “looking good”, even when I’m at my worst. I don’t have answers, I just want to say I understand. That overall flu-like feeling is the worst! I don’t think rheumatologists “get it”, they only look for joint swelling. The only thing that helps the flu-like symptoms for me is Enbrel. I hate it but can’t function without it. I’ve tried elimination diets as well as vegan diets and every natural treatment there is. Doesn’t work for me.
    I’m glad we have the Internet and we can be connected to communities of people with RA – truly the only people who “get it”.
    Many blessings….I hope you can find a med combination that works for you.

  • Lily
    4 years ago

    I realized not long ago that RA is why I’m always tired, without energy. I also have a hard time falling asleep at night, if I get to sleep at all. And, of course, I can’t get up in the morning so I usually sleep until noon. That causes me to be late for everything, not to do the daily chores, and quit going to the gym. Now I am taking Neurontin because I was diagnosed with Neuropathy and this medicine makes me feel sleepy which is good
    somehow because it helps me to rest easily.

  • judy york
    4 years ago

    I feel very blessed to of found a all natural product line, that worked for me, and I was able to stop all pharmaceutical medications that robbed me of my quality of life. I have felt wonderful for 19 months now, and I have been able to do things, that were not even in my dreams, because of my pain free status. I found blessings beyond measure, with new friendships, new products, and a new life, offering me results, blessings, and happiness! Never give up on learning and keeping an open mind to find answers that will change your life. This has been the biggest accomplishment in my RA journey. If you are interested in my journey in more detail, find me on Facebook. Look for the picture of me in my kayak!

  • clint fisher
    4 years ago

    I really admire your outlook on this. I too hate all the meds they want you to be on. I have been on the natural treatment for almost a year and I love being able to control my own pain level and enjoy doing things that I couldn’t on their medications. Yes, I do have pain, almost unbearable at times, but I can have a nice cup of cinnamon, honey, and lemon and be relived in no time.Thank you for your encouragement.

  • Juliet (DJ) Johnson
    4 years ago

    I am like your story but I was sick a long time. My whole life I was sick and not one of the 19 different docs I have seen in my life figured it out. 3 tumors. A ruptured ovary 11 total surgeries including a hysterectomy due to constant infections, diverticulitis, ulcers, stomach pain, bleeding in my stomach, now non alcoholic liver disease from the attacks, etc. How on earth did they miss this? I am 43 now and was diagnosed a few months ago. The chemo meds are hard (hair loss), and yeah like you I have days I feel great and think hey! I am going to be ok only to wake up two days later feeling like someone kicked me around in my sleep. Its the unpredictability that gets me. It’s good to get on here and see what people are dealing with. I am NOT alone. YOU are not alone. And its ok to cry foul, its ok to feel shortchanged, and its ok to be frustrated with people who don’t understand what it’s like to be in this much pain from day to day. Usually you can say o it will be over soon but with Rheumatoid Arthritis you can’t. Its I hope today is bearable.

  • Shirley author
    4 years ago

    Sorry for all the typos, written very quickly on my phone. :/

  • irmie
    4 years ago

    OMG, Shirley. Thank you for writing each and every one of these words. I learned last month that I have RA and I am having a terrible time accepting it. I am in my 60s but have always been healthy, athletic and lots of energy. I have never slept so much in my entire life and I feel guilty. I am retired so I don’t have to worry about getting up early to go to a job, but I was always an early riser and would walk 2 miles every day. Now I am lucky if I can walk from the bedroom to the sofa where I stay most of the day. I am exhausted beyond anything I have ever felt and I cannot even describe it to my loving and caring husband. You have said everything I have wanted to say but just did not know how to say it.

  • Kelly Mack moderator
    4 years ago

    Totally With you Shirley–wish I could rest all day but usually not an option! 🙂 Stay strong and keep fighting! Best, Kelly

  • Kelly Mack moderator
    4 years ago

    Thanks for sharing Shirley. The fatigue (along with all the other RA symptoms) can be very challenging. Sometimes I find I just have to take a break and I do enjoy extra sleep on the weekends. But I also think its important to stay as active as possible because doing the things I enjoy gives me more energy. Hope you find continuing support in our RA community. Best wishes, Kelly

  • Shirley author
    4 years ago

    Staying active isn’t a problem Kelly, as I’m a photographer who’s normal day is 12 hours of running around. 🙂 I FEEL like lying down all day, but I’m afraid that’s not an option. 🙂

  • Karen
    4 years ago

    Thanks for sharing your story Shirley. I hope you have a nice Christmas.

  • Shirley author
    4 years ago

    Thanks Karen, you too. x

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