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.
Quiz: What % of our community members are living with irritable bowel syndrome?