Keeping Positive

This Invisible Illness Awareness Week, I’m choosing to keep positive. I don’t want to let rheumatoid arthritis, Ehlers-Danlos Syndrome, osteoporosis, bronchiectasis etc define me. They are part of who I am but my identity is much more than that. And I’ve said it before, jars need labels, not people. It’s easier said than done to remain positive, and there have already been lots of ‘lows’, but that means the ‘highs’ will be even sweeter. I wouldn’t be surprised if a lot of people with invisible illness have depression secondary to their condition – as it is pretty awful at first when you can’t do the things that you used to. Particularly when it’s a chronic condition and someone told me recently ‘it’s for life’, almost sounding like a prison sentence. That’s not how I want to live. I want to find a ‘new normal’ and have daily goals – starting out small. For me, walking and physio are making a difference to my joints – while I wait to start anti-TNF treatment. I’m actually excited and optimistic about what the future holds when I start Humira. Knowing that it has worked wonders for other people helps keep me positive – while remembering that improvements won’t happen overnight but that it’s about  ‘comparing myself to myself’. By this, I mean seeing what progress I’m making on a daily and weekly basis, compared to how I was before starting this (fourth) drug in October. I plan to take it slowly – to see if over time the joint stiffness and muscle pain lessens, the overwhelming fatigue and brain fog start to lift, and I start to have the energy to do more every day. Of course, this is all theoretical right now, as I haven’t started the new drug yet, but rather than seeing it as an evil treatment I have to take, I want to see it as a positive thing that should (hopefully) improve my quality of life.

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2 thoughts on “Keeping Positive

  1. I wrote about being positive too. 🙂 It took me a long time to get there because I needed the time to “grieve” after my diagnose but today it’s much easier even during a bad day. I found it easier too when I finally got a medicine that worked better for me and allowed me to do more. I think that “it’s for life” is the hardest part to get over. You kinda expect that “okay I’ll take a little medicine for this and then I’m good again”. Takes a while to get over that it isn’t so. 😦 I think you’re definitely on the right track and it’s always nice to hear a little positive thoughts in your own head instead of just negative ones. I’ll try to cheer you on over the net. 🙂

    • Hi Cecilia, I’ve just seen your post about positivity too! Yes, I agree with you it’s really hard at first when you start mourning the loss of what you thought your future would be. I was in denial for the first 2 years when my RA was mild and then it suddenly got very aggressive, leading to bone erosions, which is when it finally hit me that this was a major thing to deal with! Now I’m in year 3 & about to start drug no. 4 next month – fingers crossed 🙂 I’m happy to hear that you’ve found a medicine that works well for you and means you can do more – that’s fantastic. Thanks for commenting & cheering me on! 🙂

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