What has been the hardest part of this disease for you?

What has been the hardest part of this disease for you?

So, I am approaching my 10 year anniversary (ha, some anniversary) with being diagnosed with Rheumatoid Disease. I was asked by a friend to write a few paragraphs pertaining to my struggles since being diagnosed. Since being diagnosed, I have dealt with both physical and emotional pain.
I could write about how my whole life started to change in 2007, how little things were happening here & there, swollen joints, stiffness throughout my body, fevers, aches & pains, or how I woke up one morning and I couldn’t move any part my body at all and had to lay in bed until I was able to somewhat move my joints slide out of bed and crawl to the bathroom but we (the people with this disease) all know how that felt or how that still feels. It’s not an easy life. Or how people always compare it to their pain or say “you’re too young to have that” NO I am not too young, there’s no age requirement for this disease.
There are so many things I could write about, like in the beginning having to ask my 14 year old son or my mother to give me injections because I didn’t have the strength in my hands to do it myself, that was hard.
There were times when I was driving and my hands would lock up, and i would have to ask my son to help me drive, that was hard. Being at work and not being able to fully do the task at hand and having to ask my boss to help me. Thank God he understood, but again that was hard.
I could go on and on about all of the things I’ve endured throughout the years and how hard things have been. I’ve never wanted pity and still don’t, I guess that’s why I usually just say “I’m fine” when people ask how I am feeling. It’s just easier.
Okay so I’m going to end this now with what I feel has been the hardest part of this disease. The one thing that really stands out as the hardest part was seeing the pain and sadness in my mother’s eyes. I would see it when she watched me struggle to walk, to get up from a chair, well to do just about anything that we have all taken for granted. I could see the sadness in her eyes when she had to give me an injection. I could see the sadness & heartache in her eyes when she took me for my first infusion and every single one thereafter.
Her words before I’d go in for my infusion were,” I wish it were me and not you,” and although we now live in different states she makes sure she calls before I go to wish me luck and to say those words, those words that I hate that she has to say!  My response to her is “No, I don’t wish that at all I’d rather it be me than you.” I don’t wish this disease on anyone, this is a lifetime disease with no cure, it’s not easy but we all find a way to manage it.
I still see the sadness in her eyes, even though it’s 10 years later. I get it, as a mother you want your children in the best of health and to never struggle. So no matter how much time passes she’ll always have that sadness and THAT will always be the hardest part for me.

 

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Comments

View Comments (9)
  • aussiesusan
    1 year ago

    The mind numbing change in ones mental state is perhaps more an impact than the physical changes associated with RA – one day working in a job I loved – years of tertiary education which I believe Americans call college education and/or university – rising to the top – well respected and in demand – and great pay to boot – busy with 5 ( yep 5) teenage boys – marvellous hubby – travelling – rarely even a common cold – running,swimming,aerobics & tennis – life is a dream —— within six months after my 50th birthday my aggressive RA onset took out both knees – hips – hands – shoulders- wrists – jaw – and small joints in my fingers and toes – BANG – it arrived with force and I spend the next twelve months with docs and specialists trying to get it under control – eventually yes but it’s damage done – happy cheerful to disbelievingly dispondent – self blame – guilt – stress- watching my body self destruct – the feeling of letting down my husband and family – never ever has anyone ever said this is on me – my fault – but still the guilt encompasses my thoughts more than it should – light anti depressants to add to the handful of daily drugs – keep your mind busy – out local library is amazing – I’m learning to speak languages – doing my crosswords n puzzles and scrapbooking than ever – telling my mind to behave n perk up – not always easy but worth the effort for long term good mental health

  • mcadwell
    1 year ago

    I had unrelenting fatigue for years before the pain became so bad. In my case i would say the the fatigue, mixed with the pain, is the worst. I can handle one or the other but why, oh why, does it have to be both???

  • Sneed
    1 year ago

    What has been the hardest part? That’s easy: the unrelenting fatigue. No doubt some comes from aging but how does one separate what comes from what?

  • MMacc author
    1 year ago

    “Unrelenting fatigue”, absolutely!
    I always say it’s an unexplainable “tired” that can be debilitating and it is definitely one of the hardest things to deal with!
    I’m so tired of constantly feeling tired & drained!

  • Lauren Tucker moderator
    1 year ago

    Such an touching story MMacc. I am glad you were able to share this with us and all of those living with RA. I am sure others can relate to this. As a mom myself, I know I certainly can. I am glad you are part of our community. Reach out to us anytime. Gentl Hugs, Lauren (RheumatoidArthritis.net Team)

  • MMacc author
    1 year ago

    Thank you Lauren

  • Eebtool
    1 year ago

    MMacc, is there anything a mother would not do for her children?

  • PatHirsch
    1 year ago

    My mother killed herself when I was 13, in January it will be 51 years ago. I never had kids, countless miscarriages but no kids. I am 64 years old. I can’t identify with motherly love but I am glad you do.

  • MMacc author
    1 year ago

    Nope

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