Summary of Post
I love exercising but can get sick if I push too hard. What kind of sick? My kidneys signal their protest by going on strike, leading to relapse of a chronic autoimmune disease that afflicts me (Henoch Schonlein Purpura). Yet, exercise is good for me, so I continue to do it. I need it! For now, I have to do it in moderation. This post outlines my exercise routine.
Just what is my problem? Can I exercise?
Good question. I google 'Henoch Schonlein Purpura and Exercise’ and come up with just about zilch. Not surprising since only 5 people per million are diagnosed every year. HSP is quite rare. Last I heard I am one of less than 10 people in Malaysia who have this. So, can I exercise? I guess I will have to figure this out myself.
There’s information on exercise for a more common autoimmune disease Systemic Lupus Erythematosus (SLE) or Lupus. Lupus sufferers can have joint pains (like me), skin rash (like me), fatigue (like me), sometimes kidney problems (like me), and sometimes their immune system attacks their own blood and brain (thank god, not me!). Some have debilitating joint pains that really limit their mobility and ability to live a normal life. And some die from complications involving the kidneys, blood and brain. There is no cure.... yet.
One difference between my friends with lupus and myself, is that I get hit with everything, plus gastrointestinal problems - my insides bleed. I know, I know, I’m just
gross. Actually, among HSP sufferers, I am again a rarity because it mostly affects kids, rarely involves kidneys, and usually goes away. None of which apply to me. Oh well, I’m just going to have to suck it up and deal. I have lived with this for over 12 years now, and statistically speaking should already have lost my kidneys, so I am just going to be grateful.
gross. Actually, among HSP sufferers, I am again a rarity because it mostly affects kids, rarely involves kidneys, and usually goes away. None of which apply to me. Oh well, I’m just going to have to suck it up and deal. I have lived with this for over 12 years now, and statistically speaking should already have lost my kidneys, so I am just going to be grateful.
Googling ‘Lupus and Exercise’, there’s a bunch of info that basically says light, non-weight bearing exercise. Swimming is ok, and I see a few women with lupus who can still run but many just cannot. I know I can. I just need to go easy on myself. What is ‘easy’? I’m still learning.
My exercise routine
When I’m in remission and feeling good, I seem to handle prolonged exercise well. I didn’t get sick after the PD Tri Clinic recently, where I swam 800 m, cycled 20 km and ran 4 km in over 2 hours (I am a slowpoke, I just makan angin haha). In these joyous times of being well, I try to go for a run, bike or swim of about at least 30 minutes every day. I don't exercise intensely. If I can chat while doing that exercise, that's what I consider light exercise. I am so glad to be able to run! I even have running dreams. Actually, if I can stay in remission while exercising like this, I have my heart set on racing for a cure for lupus. Only a handful of lupus sufferers who are able to run I want to run on behalf of those who cannot. Because right now, I can.
When I’m not feeling too good, I don’t recover well from any sort of exercise. This is because the loss of protein through my kidneys leads to low albumin levels in my blood. Albumin is the good stuff that carries other good stuff to your cells. Low albumin levels = bad times for Gracie. In these times, I still do light exercise. Wimpy stuff like 10 minutes on Orbi (my elliptical machine). This forces my blood to move and I always feel a wee bit better.
Did I push too hard? L
I had been feeling chilled for a few days now, and yesterday I felt exhausted, which can be a warning sign that I might be relapsing. But I ignored that, and went for a 13 km bike ride and 2 km run yesterday. That night, my kidneys started to boycott, and today it has been scary iffy. I feel ... not so good. Bad timing, because tomorrow is my bloodwork at HUKM and I was looking forward to bragging to my doc that I am doing a triathlon in PD soon. I wonder if this episode has anything to do with The Haze. HSP is a hypersensitivity syndrome – sensitivity to chemicals and pollutants (I’m also quite a sensitive and caring gal ahem). Who knows?
Thanks for listening to my ramblings. Please feel free to leave a comment!
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xo Gracie
A click on any ad below will put a few cents in my pocket, from the advertisers. Thanks for supporting my blog!
xo Gracie
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| Slow shuffle-jog at the Harrison Hills Park |
I am just reading your blogs and can sense what truly a courageous person you are. I have my full respect for you.
ReplyDeleteI am also a keen athlete and am thinking of taking part in the triathlon this July at PD. However, what set me back this couple of days is my low blood pressure that causes me to have a little giddiness and nausea. Doctor said I was consuming those protein shake too much too soon. I have been resting at home for a few days now.
After reading your blog, my desire for triathlon is firing again. I think you are such an inspiring athlete and I wish all the best to you!
May God bless you and your family too!
Yours truly,
Joseph
Joe, thanks for stopping by and thanks for your kind words! You certainly are a rare breed - Male Monty Teach! Most definitely sign up for the PD triathlon this July - you can get some practise in with the monthly TriEAThlons we have been holding in PD. Find me on FB and I'll add you to the event invite list. Take care and keep tri-ing! Blessings.
DeleteWow, I just googled Swim with HSP and found your blog. I just was diagnosed with this yesterday. They said it would clear up in a month. I had started a couch to 5K program but I was told not to run or do Barre for at least a week. None of the doctors had ever seen a case in an adult and I a whole bunch of them come in to see it. I was wondering if I could at least swim since I just lost some weight and would very much so not like to regain it.
ReplyDeleteI can't imagine living with this condition as long as you have. I have been unable to walk with out pain for the past two days and it has been quite a humbling experience.
I applaud your efforts and its comforting to know that I am not alone even though the symptoms of this disease are really scary.
Hey Lala, thanks for your comment and thanks for sharing. So sorry to hear about your diagnosis of HSP and I have my fingers crossed that it resolves in a month like the doctors predict. I'm sure you are okay to swim. Keep in touch and let me know how it goes, and if you have any questions don't hesitate to ask ya.
DeleteHi Grace! First, you're completely adorable.
ReplyDeleteThanks so much for posting about exercise. There's so little about it and HSP. I'm going through my second year of having it. Last time it lasted 3 months and this time the rash is thinning out and I am having more and more good days and I'm 2 months into it. I did see a specialist and he's doing a conclusive test to be 100% sure it is HSP, but he says it looks and acts just like it. Anyway, he said that I will likely be dealing with this for the rest of my life.
I'm feeling so restless and really want to get back to exercising. I've definitely put on some weight both times with the HSP. Mentally I am finally at a place where I want to start losing it and I'm starting slow by wearing a pedometer and am trying to gauge how I feel as I add steps to each day.
I would love to stay in touch with you, as I don't know anyone else with HSP and you seem to be quite wise about it. I'm so glad I found your blog!
Hi Pickle! Thanks for your comments! Me, adorable? Aw shucks hehe. Love your blog!
DeleteOmigosh it would be awesome if we could keep in touch - only a handful of folks with HSP ever find or message me so it's always really great to connect. I'm on Facebook as Grace Tabitha Lim-Clark, and also email. Hope to hear from you there!
My doctor conclusively diagnosed the HSP with a kidney biopsy. Hopefully you won't need that, but if it happens, it's not bad at all.
Hey, if you're feeling restless and want to exercise, i'd say have at it! It always makes me feel better. And you seem to have a sensible attitude to it, i.e., not looking to break any personal speed records or push too hard. :)
Sending lotsa good vibes your way!
Hi Gracie! :) Thank you for sharing this with us. I myself got diagnosed with HSP about 4 months ago and to be quite honest I'm not willing to let it put limitations on my life, having in mind that it could last for quite some time. Ever since I got diagnosed the doctors have been treating it with corticosteroids which make your appetite go to the roof, so I've gained quite some kilos over the last few months. Every time I tried to stop taking the corticosterois though, the HSP relapses. How do you treat yours and does it relapse often? As you posted this quite some time ago, I'll try adding you on Facebook as well, since you do seem to know quite a lot about it and I don't know anyone who has it either. Once again, thank you for sharing this with us! Greetings :)
ReplyDeleteHi Flowah, thanks for sharing about your HSP. I'm sorry to hear of your struggle with the corticosteroids and multiple relapses, however you seem to be keeping your spirits up and staying positive about what I'm sure has turned your life upside down. HSP doesn't have to ruin your life - I continue to manage the condition with careful watch on my stress levels and diet - so far so good! I blog about managing HSP and successful weaning off corticosteroids in another blog - wealthhealthwise.blogspot.com check it out! I haven't updated my blogs much because I have my hands full taking care of my baby who just turned one. See you on Facebook!
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