Question about the summer and exercise. - LUPUS UK

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Question about the summer and exercise.

Willow7733 profile image

I plan on starting an exercise program this summer by going for walks and hopefully get enough stamina at o start jogging. I wonder if anyone here is exercises outside and how do they manage it when it is sunny? I work until 3pm Monday to Friday, so my plan is to start going out regularly at around 4pm. (I have a lot of blood clots due to secondary APS from lupus, and I really am determined to eat better and exercise more to hopefully never go through what I have been through these past few months ever again). Thank you for any thoughts you can give me on this. So new, and really don’t know much about everything. I am on Plaquenil ( and read I should stay out of the sun for that too - not just for my photo sensitivity.)

15 Replies

I’ve ditched the 🚘, walk and bus (correctly socially distant from the next passenger) everywhere, use my sholley, mask 😷 up, wear 👒 plus sunblock (factor 50)and wear 😎.

Neighbour says I’ve gone “loopy”! No, I say I’ve got lupus!😜🤨😡.

Very sun sensitive so out shopping 🛒 only in the evenings. Never use a gym, too much BO💨 and hot sweaty bodies with hardly any social distancing.

Come home and have a long disinfecting shower! 🚿

Keeps covid off my body but if it’s tooooo hot it’s rashes all over...🙁😩...

But I love shaded forest walks and sheltered parks. Beaches can be a problem and a no go area...too much sun. 🌞

I walk to work at 6am and return late afternoon. I wear a hat if sunny and in warm weather sun screens but the sun is not to much of an issue for me. I also take a daily walk after dinner. I love this time because it is quiet and cooler in the summer. This might work for you with your sun sensitivity.

After my stroke my neurologist told me to walk everyday like my life depends on it for he thinks it really does depend on it. Keeping our hearts pumping with movement is the best clot prevention there is! I remember this advice anytime I feel like skipping my daily walk and it always makes me go rain, snow hot or cold. I have not missed a walk on 2 1/2 years. Good luck and just remember how bad clots are it is a great motivator to keep moving.

whitefishbay profile image
whitefishbay in reply to Roarah

How long/far do you walk daily?

Roarah profile image
Roarah in reply to whitefishbay

I walk fifteen minutes to work and again later home and my evening walk is always at least half an hour usually 45 minutes. I walk just 45 minutes on days off but do yard and house work to fill in the missing walk to work. Studies show just thirty minutes five days a week is enough to decrease cancers, heart attacks, strokes and dementia. I really enjoy my daily walks too.

whitefishbay profile image
whitefishbay in reply to Roarah

Me too. I try to do at least 10K steps and enjoy any walking even the mundane. Trying to get my husband out of the shed/office to walk....nagging does not work. I will tell him 30x5 will help to stay health...not great at taking advice from me. Thank you. Spring on the way.

I'm out every day regardless of weather with the dogsHydroxchloroquine causes photosensitivty so cover up head to toe,factor 50 all year ,hat and sunglasses. The rest of the time try to stay out of the sun as much as possible

Xx

Hi Willow. In mid-summer UV can often be really high in late afternoon - up to 5 or 6 on the met office scale. I find a hat is essential at all times, winter and summer (my hair is now quite thin and my scalp suffers badly). I have a Tilley hat which keeps the sun off nicely, and is washable and indestructible. Sunscreen is obvious. I use a Neutrogena broad spectrum SPF 100, but I know this is a very personal thing . You go to work - so this may not be possible - but very early in the morning is the best time for low UV. Exercise is the best possible thing you can do for your lupus - massive good luck with it. There are ways round everything in terms of sunshine!

Well done for starting, I do find my symptoms are better when I eat cleaner and exercise I do a mixture or cardio and weights. Hat, sunglasses and sunscreen is a must. Good luck

Willow7733 profile image
Willow7733 in reply to Kell12

I really want to whatever I can to stop another bad flare from happening and I figure most problems do better when you watch what you eat and exercise. Right now, I have a hard time to make it from the staff door to my car in the parking lot at work. Halfway there I am gasping for air (still have several large clots in my lungs). But I am determined to start moving more and being more healthy. I am not that overweight, but I would like to get back into shape. I see my pulmonologist Monday morning (after I go through a lung function test) so I think I will ask him what he thinks I can do. I also have a few beach body programs (like T25 and P90X) that I would LOVE to start! Best thing is,,if I become really winded, I can pause it and catch my breath. I will see what the specialist says.

Kell12 profile image
Kell12 in reply to Willow7733

Start slowly and don’t over do it, or will end up doing more harm than good and work up from there, also if you over do it straight away then you won’t enjoy it which then puts you off doing it again. I am sure you will smash it x x

Roarah profile image
Roarah in reply to Willow7733

After my stroke i had minimal use of my right leg so I started by just walking down my drive and back multiple times a day then I went a bit further the next day until I built up to longer walks. It is shown that short burst of exercise many times through the day is as important as longer durations. Start during commercials doing a few jumping jacks or run up the stairs a few times resume your show and do it again during the next adverts. This helps build endurance and it pumps the blood regularly during a usual idle activity.

Factor 50 lip balm too x

Good for you! Sounds like a great plan- good for mental health too. I always wear a hat, sunglasses, thin long sleeve tops and lotion on sunny days. I used to do this on v cloudy days too, but over the years I’ve relaxed a bit more & don’t seem to react. I’m not on HCL though. I always walk on the shady side of the street in strong sun. 🧢🕶🧴😷You should be fine. Enjoy the fresh air😀

I suffer from photosensitivity and have noticed as WinterSummer says that UV readings can be at their highest at 4.00 pm. I got a malar rash last night after being out for a walk in the morning with F50 on and F50 hat, UV is already reaching 5 at times. I have bought a pair of leggings and T shirt with F50 in them from Solbari - it might be a consideration for you. Great to exercise, just something to work around your photosensitivity. x

Willow7733 profile image
Willow7733 in reply to RosieA

My face is a mess after being outside and washing my car yesterday at 3pm. I didn’t think of putting on sunscreen. I bought some pants that is dark to block out the sun today for my walks. There was a sale at the sports store near my home. Was $89 and I got them for $25. Adidas. So, I am working my way to getting fit!

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