"Learning Hope"
Hope is not a word in my vocabulary. It never has been. The way I see it, it’s difficult to have hope. When you have hope, and then things don’t go the way you thought, it makes you upset. But if you were expecting the worst all along, then you can’t possibly be caught off guard.
The dictionary defines hope as “the feeling that what is wanted can be had or that events will turn out for the best”. I don’t believe I was born without hope. My worldview was shaped differently. I’ve been living with a chronic illness since I was born. Rheumatoid Arthritis. So you see, hope was difficult for me to grasp. I see things in black and white, there are no shades of gray. I’m either having a flare-up, or waiting in the phase of remission, for another flare to strike. I’ve just recently realized the scope of how RA has directly shaped the person I am. RA has not only taken over my body, but ‘who I am’ is changed because of it. I am somewhat of a control-freak, because obviously I cannot control my RA, so I try to control other things, and the people around me. I’ve actually developed an eating disorder, that I now believe could have stemmed from my RA. I’ve always been told to keep my weight down. I’ve never felt perfect, or normal. I can’t control my RA, but I can control what goes in and out of my mouth, AKA anorexia. I regret that every day, because as bad as my RA is, anorexia is something quite worse. The two combined make me insane on a regular basis. To make matters worse, both illness feed off of each other. I’m wary to try and recover from my eating problems, because of the RA, I am on steroids, so I’m scared to eat, I know I’ll gain. But slowly, I’m learning to eat better. I’m also investigating the fact that a low-calorie diet may be good for people with RA. On the days where I stay between 700-1000 calories, my symptoms improve. When I have considerably more, my symptoms get worse.
Because of the constant, “I’m never going to be good enough” voice in my head, my confidence has taken quite a hit. I don’t have as many friends as someone my age should. Friends want to do things, and go out, and I don’t want to let anyone down. Its so hard, because people take this the wrong way, they think I’m lazy and boring. People don’t understand the effects of RA. I’m tired, my body is acting as if I have an infection 24/7. Think of how you feel when you have a sinus infection, tired right? That never goes away for me. My immune system is working overtime to destroy the cartilage in my joints, mistaking it as harmful. My joints ache, my body hurts, I have a constant low-grade fever. It’s like being sick and never getting better. The worst part is knowing that there is no cure. The problem lies within the very DNA that I was made from. There is no killing it, without killing you.
8 Tips for Coping with Lupus 
10 Ways Lupus Affects the Body 
Conditions That Mimic Rheumatoid Arthritis 
5 Tips for Exercising with Lupus 
I used to think that way, too - it's better not to get excited so you don't end up getting disappointed. Like you, I think it had a lot to do with having had RA since I was little - if you never know anything other than this thing ruining your plans and how you feel, it's hard to learn to look at the bright side of life. And your comment about being a control freak definitely rang a bell, as well. I'd recommend you pick up a book called Strong at the Broken Places - is a wonderful book and it's a place where I finally, at the advanced age of 47, learned that having a chronic illness often makes you control freak. If you can't control how you feel, you try to control everything else.
700-1000 calories a day sounds a little low (as far as I know, 1200 is considered a good average for women), but given that you're living with anorexia, I can imagine how hard it is for you to get there, so I'm so glad to hear that you are doing your best to be healthy. If you're interested, check out our post on the Mediterranean diet, which has been found to have anti-inflammatory properties, as well as being good for your heart and extremely healthy in general. Whole grains may also be helpful and there is some evidence that a vegan, gluten-free diet may also be helpful for RA.
I was where you describe when I was your age, as well. Didn't have a lot of friends and it was very lonely. I found that the Internet has been a terrific way of getting around that - if you're connecting to your friends over e-mail or in blogs, and you don't have to leave your house. And for me, it's often lead to lasting friendships that have translated into "real life".
What you're describing about methotrexate actually sounds as if you should talk to your doctor about treatment options. It's common to have to manage your energy with RA and we all decide what side effects we can live with and which we can't, but it sounds to me as if the methotrexate is potentially affecting your life almost as much as the RA is an on top of all that, it doesn't sound as if it's controlling your disease terribly well. If insurance/money is a concern, check out Lisa Emrich's post on what to do if you don't have insurance, as well as her exhaustive list of financial assistance programs for the various medications.
It took me a long time, but I finally learned that hope has a lot to do with how good I feel, both mentally and physically. It also took a long time to start to change my risk avoidance - I have now realized that to experience things, to really live, sometimes you have to risk. Calculated risks, sure - not bungee jumping off the Empire State building, but yes. Risks.and for the occasional reality check, when you feel you need it, I recently found 12 words that make me feel a lot better.
I love your description of how you feel a connection to the world - so much of what you wrote about it reminded me of me. Which is one of reasons I love the Internet -I am almost 30 years older than you are, but it sounds as if we're in the same place.
Thank you so much for sharing your story, who you are and who you're trying to become.
Thank you so much for posting your reply. I knew it was simply not possible for me to be the only one that has felt this way. Things are getting better each week, I'm was able to reduce my prednisone to only 5mg a day, and I've found that tart cherry juice has eased a bit of my pain, enough for me to get in a small workout 4 times a week.
I feel the same way about the internet, you can really form some amazing relationships with people online.
I'm also in the process of enjoying my life, it sounds simple, but until recently I discovered that I was not actually enjoying being alive. Today's task is learning how to knit and crochet, its something I've always wanted to do.
Thanks again, your message really made me feel better :) *hugs*
Good luck with the knitting and crocheting - I used to do both and miss it a great deal. Aside from creating beautiful things, I loved the meditative aspect of it. There's something so soothing about sitting quietly, the yarn gliding through your fingers, the click of the needles and now I'm making myself miss it all the more again.
Your post touched on so many important things about growing up and living with this disease that can be very useful to our younger users, so we'd like to feature it on our new JIA area. We hope you like that idea.
I love knitting too, it takes some practice, but I'm getting the hang of it.
It would be so amazing if my paper was featured, I've always loved to write, and I've also been looking for some way to spread awareness about RA. So this is just perfect news!
Thank you!
-Brittany Gilbreath