Looking In The Mirror

RA Guy Adventures of RA Guy 9 Comments

Those who have chronic diseases did not choose to become heroes, life chose them. -Chuck Gallozzi, motivational writer

MirrorRheumatoid Arthritis Guy once again find himself in a downswing. The funny thing is, I actually feel sort of good – much better than I did during previous downswings.

I don’t necessarily want to say the dealing with the ups and downs of living with rheumatoid arthritis becomes any easier…the pain is so intense, that not even my memories can accurately record how bad it can get. Each time my pain returns, I still continue to be surprised at how much it can hurt. Is is only during these worst moments that I can totally relate to similar episodes that I have passed through before.

Throughout the day, is feels like two huge boulders are grinding down on each wrist. The tendons (?) on the outer side of my hands get so tight, that my little fingers start pointing out in the weirdest directions. My wrist joints get so inflamed, that the swelling is visible and the joints stick out.

The only aspect of this episode that worries me somewhat is that I am still on a Prednisone taper. I hadn’t expected this level of symptoms to return until I finished my current corticosteroid treatment, but hey – what can I say? If there is one thing that I have learned about living with rheumatoid arthritis it is that it always keeps me on my feet. (That would be literal, of course…because when it affects my ankles and feet as much as it is currently affecting my wrists and hands, the last thing I do is stay on my feet.)

I find myself at an interesting stage. Even though I still do get occasional waves of intense fear, overall I feel okay. I’m trying to do my best when it comes to taking care of myself, and I am constantly looking for ways in which I can take care of myself even more. Instead of concentrating on my symptoms – as limiting and painful as the can be at times – I find myself focusing in on the positive aspects of my life. Previously I wrote that my list of things that I can do will always be long than my list of things that I cannot do. Recently, I have been reminding myself of this on a daily basis.

In the past, period like the one in which I currently find myself were marked by one frame of thought: “Get through this!”. Of course, I still am motivated by moving forward and getting past the worst periods…but I also find myself okay with where I am at the moment. This is my life. I can adapt accordingly in order to make sure I get enough rest and do not bring additional harm to myself…but in the end, life goes on.

I don’t want to sit on the sidelines and be a spectator. I would much rather be a part of the game.

Living with an illness that is both chronic and crippling raises many challenges. One of the more obvious ones is the sense of self-image. I look at myself in the mirror, at my thinning hair, at my slight limp in my left ankle, and at my crutches. Five years ago I would have never imagined that any one of these aspects would have been a component of my self-identity…but now they are ALL a part of who I am. Just like this is my life, this is also the person who I have grown to become.

I used to react strongly against aspects of my illness which I thought were not a part of who I was. Just as I continue to learn that life – and living with rheumatoid arthritis – is a process, I also continue to learn that my illness is an integral part of a the person who I am. The odd thing is that by accepting this, my disability actually becomes a less identifying factor of my self-image. It’s funny the way things work sometimes, no?

Some days I choose to highlight one aspect of my self over another aspect – this is constantly changing, and it one of the beautiful things about life. I’ve grown to accept the impact that rheumatoid arthritis has had on my body up until the moment, and I hope to remain as open and accepting when it comes to the impact that rheumatoid arthritis will have on my body in the future.

Whatever happens to my hands, to my wrists, to my knees, to my ankles, to my toes, and to any other joint, one thing will be certain – I will still be me.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 9

  1. Julie Woodard

    I read your words and can so definatley relate to them. This is just a part of who I am, not the whole of me. I too look in the mirror and see all the changes. I wish I still had the positive outlook that you have. Right now I don’t, right now I am fighting to just be solvent for another few months. It seems that my fight with this disease has taken me to places that I just didn’t want to go, and now I am on yet another path I don’t want to be on. I am in the process of giving up and giving in. It shames me to stop fighting, but I don’t know what else to do at this point in my life. Giving in is my way of trying to take some control back. Perhaps, if I can just put down the sword for a while I can pick up another weapon and move forward.

  2. Millicent

    After Christopher Reeve’s terrible accident, he never gave up hope of walking again, & he pushed on each day. He also wrote a book called STILL ME, & that is what your post reminded me of today. The same is true of people in their 80’s & older…they are still themselves as they were when they were younger. It’s just that their container has changed.

  3. MissDazey

    My dear young friend, much of what you are thinking and going through is a natural “who am I” experience that everyone goes through. Usually several times as we get older and wiser, have changes in our lives.

    Take care and smile…someone is sending you positive, silly thoughts.

  4. Helen

    Sometimes the frustration is more than I can stand. Slight flare, possibly because of lowering dose of prednisone. I can deal with the aches and pains, but the fatigue just frustrates me no end. There were at least three things on my calendar that I wanted to do and I spent the major part of a beautiful day napping!! Just too tired to even shower and get dressed.
    Today I go for another IV Remicade and I usually perk up after that.
    Your posts as always, lift my spirits and let me know that there are people who are in the same boat and do understand.
    Never underestimate the importance of what you write!! Thank you.

  5. korrysmum

    Thanks everyone for letting me too know I am not alone. My IV orencia is due next week and I can feel the old fatigue returning, but it is wonderful to have these drugs!

  6. Remicade Dream

    I really sympathize right now – I am also on a nice high prednisone taper, and for the first time ever, my RA does not seem to be responding to it. This is scaring me. Yet I am trying to learn to accept this in the way you describe, and focus on the things I can do instead of the things I can’t. I admit, though, my fear is getting bigger as this goes on.

  7. Post
    RA Guy

    Julie – stay strong! Just realizing that you are currently going down a path that you do not want to be on is the first step towards moving back in the right direction. Living with RA can be overwhelming as we all know, give yourself some time to rest and to create some motivating thoughts to continue moving forward!

    Millicent – I’m going to look into this book, thank you for sharing!

    Miss Dazey, I’m smiling 🙂

    Helen, I hope your Remicade treatment went well. Up until I started this blog I was very isolated myself, in terms of feeling alone. One of the best rewards of this blog has been being able to hear the stories of others, and know that I too am not alone. Thank you for your kind words.

    korrysmum, hope the fatigue is manageable, and I wish you the best for your Orencia treatment next week!

    Remicade Dream, seems like we’re in the same situation right now. I was really surprised that the symptoms returned to this severity so quickly in the midst of my current Prednisone taper, but there are so many factors that influence my RA that I just have to continue moving forward with all of them…can’t quit now, no? Hehe…

  8. Lynn Rivers

    “I don’t necessarily want to say the dealing with the ups and downs of living with rheumatoid arthritis becomes any easier…the pain is so intense, that not even my memories can accurately record how bad it can get. Each time my pain returns, I still continue to be surprised at how much it can hurt.”

    Oh so true, so true!!! We forget don’t we. You have a couple of good weeks (or months) and your body starts to forget. I guess its a good thing in a way. I try to remind myself that it could be much worse so that if it happens again I’ll be more prepared.

    I’ve been feeling okay since February and when I think that something could happen and I could end up back where I was before… I just shudder at the thought.

  9. Sunita

    “Throughout the day, is feels like two huge boulders are grinding down on each wrist”…I know this feeling. Without Diclofenac (every 12 hours) I wouldn’t be able to move.
    I feel hopeful that the rheumatology team want me to start on one of the aTNF drugs. They are expensive (on the NHS) and its been a long haul. In the last year, I’ve watched my hands becoming more and more crooked and witch-like. I need to strengthen all my my muscles, so my joints will allow me to do normal every day tasks. I’ve become so thin with psoriatic arthritis…and I need to build up some muscle mass. I feel more optimistic that I can try some drugs that are specific immunosuppresants, as opposed to the old fashioned therapies that were so general… that all contagion was welcome. I was allowed to choose, and I hope to go on enbrel next week. Results can show in as little as 2 weeks! Tell me thats your experience…I need to go back to a meaningful career!!

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