Why I ride my bike: Part 2

I have an autoimmune disease, it struck me 6 years ago when I was 50, it’s called Linear IgA bullous dermatosis, which means blistering skin disease caused by IgA antibodies deposited in a linear fashion in the skin. I take immune suppressing drugs for it: at the moment, methotrexate and prednisone. I also take a large dose of phenergan every night so I can sleep without itching. I also have fortnighty infusions of IVIG in the hope that they will allow me to stop taking those drugs, which of course are not good to take.

The most disabling part of it for me, now that the blisters are controlled by the drugs, is the tiredness I get, especially after the infusions. For someone who used to be VERY active, this has been very hard to adapt to.

Why do I take those drugs if they are so bad? Because my skin would be covered in blisters and scabs, my clothes would stick to me, I would get recurrent infections in the widespread lesions I would have, I could not sleep due to the itching (the blisters are intensely itchy), I may have to have a feeding tube due to blisters in my throat and mouth, I could go blind if the blisters attacked my eyes … it would be an awful life.

Anyway, moving on to the cycling part of this post, having this illness has allowed me to cycle a lot more, in some ways. While I can’t do the intense workouts I used to do, I can actually use my bike for a lot more everyday transport and, as my life has become a lot more simple as I no longer work or study or travel at all as I used to, it is easier to use the bike a lot more. Also, my children have grown up so I no longer have the “mum’s taxi” demands on me. Most of my rides are fairly short, the longest I would do is about 40km and I don’t go very fast, but all of the riding I do helps me to maintain a healthier life than if I were inactive. It also fits better with how I would like to live, I have always longed for a sustainable life, and now in many ways my life is like that.

I have noticed that other bicycle bloggers have autoimmune diseases, so this phenomenon of illness linked to bike love must be a reasonably widespread thing. The other thing that has become larger in my life since getting this illness has been my love of gardening, I get great pleasure from creating something beautiful and natural.

So when I don’t post for a few days, it is usually due to my not feeling so good. When I can’t get out and ride, I don’t feel much like blogging about it, and I also don’t think very clearly, even if I do have a backlog of stories I want to post about.

The good news about this type of autoimmune disease is that it hits hard, then usually burns itself out over time. I am certainly much better now than I was when I first got it, and hope that one day it will go away completely.

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7 Responses to Why I ride my bike: Part 2

  1. petermc says:

    If any activities will help, Vicki, it should be cycling and gardening. Thanks for sharing your insights.

  2. Vicki says:

    I was not sure whether to write this post, Peter, I don’t want to sound like I am complaining, just for people to understand, and to see that some good things can come out of bad things too. Cycling and gardening are like food for the soul, and many cyclists seem to be gardeners as well.

  3. Darryl Wood says:

    I was a keen cyclist, mainly mountain biking but have also had to deal with a genetic skin condition called Haley – Haley Disease. It’s incurable and limits my days to measured activity. Because I cant cycle anymore I’ve taken to restoring vintage cycles. Well I have a few under way. I became inspired from a recent visit to Amsterdam. The locals mainly use fixed speed ‘coasters’. Amsterdam relegates the automobile to second place. I saw many elderly people cycling through the old canal quarter.

    • Vicki says:

      Darryl, that is awful that you have this condition and no way of treating it, I am grateful I have treatments available to me. Do you have a blog showing the restorations projects you are doing, it sounds inspiring!

  4. Jess says:

    Yes, thanks, you are an inspiration mum. When I remember how active you were it was almost unbelievable that you could juggle a family, job, triathlon training, study, fitness career etc and dedicate time to all these things alm

    • Jess says:

      Sorry, almost everyday! And yet now it is even more inspiring seeing the journey your health has taken you on and your optimistic and positive outlook and dedication to pursuing a healthy and sustainable lifestyle. I hope my kids can find similar qualities in their mother as they grow.

      • Vicki says:

        Thanks Jess, only those close to me know what it’s been like for me, but great that my kids will learn from what I have had and be thankful for good health.

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