Sticky Blood-Hughes Syndrome Support
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Question for Mary

Hello Mary,

May I ask you a question?

I notice that a few times you have mentioned that you exercise, and wondered if I may ask what tpypes of exercise you do.

Prof D, Cruz has recommended that I walk in the park

This is something I do for leisure activities with the grandchildren or my bf,but do not do regularly enough for it to be classed as exercise, and I do not live near a park ,so it is not something that I can build in to my normal routine

I used to do an aqua class but gave it up a year ago as it was causing too much exhaustion and the whole of Thursdays were written off and a takeaway ordred for dinner because i had been to aqua

Also, after enjoying it for 4 years, I found I was starting to dread it as the changing rooms had become dirty and smelly and the water very cold

I get post exertion fatigue so cannot do anything too rigorous, but I am fed up with being so sluggish and would like to try something new

17 Replies

Oh hi there, I used to do aqua aerobics as well, but live too far away from the public pool, plus I kept getting dangerously bad double cellulitis in my ears... so. I have awful fatigue due to the profile of the five things I have, however I try daily to do something. Even in the winter especially with the sun out or not. I make sure I am outside some of the time, even if too flared to walk anywhere I wrap up and go outside. Regarding the exercise I do ten minute slots of things to get my heart rate up. Gone are the days when I can work out for an hour and a half. I have one of those air walker machines which is left permanently up in front of our televisions, so I watch something and go on that, on a good day twenty minutes, then again later in the day. On a bad day this changes to three sets of ten minutes. I find this machine keeps me supple and in trim. I also progress to light dancing for a change, anything that gets me moving. We also have an exercise bike stuck out in the garden, so I do go on that for ten minute slots. My best results are with three sets of aerobic ten minutes. At times if I have very bad flares going on or infection I have to stop, but during these phases I walk more, even if it is at snail pace. I am likely to get my husband to set off in the car twenty minutes after me, and then pick me up. I never give up. I also have an exercise disc which you stand in the centre of and swivel on, that I use as a warm up device on really bad days. Hope this helps. MaryF


Hallo Mary. I like your stile! Kerstin


thank you Mary

I used to have an airwalker,we used to hang coats on it lol, I gave it to my daughter

Am toying with the idea of borrowing my sons bike (an actual bike, not an exercise bike)

would only be going round the block as am not road confident

I do walk a fair bit but quite slow,I thought you had to walk briskly for it to be of any purpose

What do the rest of you do?


Hi donnabrain,

I hope you do not mind me answering also your question. I think your doctors suggestion was a good one.

I am 70 next month and I always (so often I is not impossible) take my around 50 min walk here outside Stockholm where I can see all the flowers coming up now here in the gardens where I can hear the birds singing. I do not know what I would do without my walk. I often climb the stairs instead of taking the "Rolling stairs" (in Swedish). I walk with some tempo also and move my arms and see to it that I have nothing to carry. I have noticed there are no bad weather just bad clothes.

I am lucky because I do not work any more so I can rest several times also but not sleep. A doctor once told me (before APS) that there is nothing that is so dangerous as sitting. I then worked as a secretary.

It is good for the body and the memory and for the heart and bloodpressure also. I have also been given a program for my hands and back and so I lay down on a special carpet on the floor and make this practises

every evening. It takes only 5 minutes. Try this if you have the possibility and you will see it is like a drug. Yes it is a drug to me!

Best wishes from Kerstin in Stockholm


I would add: If you are like me on warfarin you have to see to it that you do not hurt yourself.

That is why this is the best. I also always feel if I have been dringing alcohol because of dizziness. So I bump into people if I go with them for a walk. Better go alone and look where you go. It does not cost anything. It is free. Kerstin


Love your out look ---Buddy :-)


Hi Donna

I used to be a racing cyclist and I still like to do long rides for pleasure, especially if there is a pub for a lunch stop somewhere handy on the ride :-)



I dont mind at all Lure2, the more the merrier!

I too love to see the flowers and hear the birds,but am obviously not as dedicated as I do see rain as an excuse to stay in

Both yours and manofmendips replies confirm what I already suspected, in that I must find something that I enjoy again (I did enjoy the aqua for 4 years but once the feeling of doom set in on a thursday it was definately time to stop


Most of us have been forced to stop things at least for a while. Many have so much pain that it must be hard to . move the body. I do not know how much pain you have. I have come to an age when some of my friends are not so well any more. The problem with this illness is that people around us have difficulties to understand us when we look so well. I hope you have a good doctor that understands APS.

I have a friend who likes to play golf. Could that be something?

Best wishes that you find something that makes you feel good: Kerstin


I don,t liver near to a golf course either

am working on persuading the teenage son to lend me his bike


Donna I walk with my dog Casey - he is my service dog so he can go anywhere with me {accept any type of radiation }- We walk in town here or in the wooded trails and up and down the mountain's so it's good exercise---- where do you live D ???? jet & Casey


I live in Croydon

That,s on the outskirts of London


This is a great topic. I am new to APS (dx post stroke in March) and find that prior to stroke I went to dance classes, exercised at home and lifted light weights. (I'm 67.) Now I can thankfully walk a mile to 1-2 miles a day. I also live in a 5th floor walkup and that in itself is exercise. I'm finding that if I do any aerobics aside from walking, I often feel "loopy" or a little sick afterwards (?worn out) I did my stationery bike for 20 minutes this week and didn't feel well afterwards. I think I'll try 5-10 minutes. I can no longer do even light yoga which seems not to agree with me either. I've also frozen my gym membership and may have to give it up. I have to see what I can tolerate little by little but I won't give up moving and gratefully my body can tolerate the stairs and walking. Today it's raining in New York City but lightly so I'll still try to get at least a mile in. If I don't do some sort of exercise for a whole day, I feel worse.


Hi Loretta,

Amazing how well you have been after a stroke in March. Or perhaps you were diagnosed in March and had your stroke earlier. It took at least 2 months for me before warfarin helped completely.

I Think you are doing just fine climbing up to 5th floor (I live at the 7: floor but it is too high to walk mostly so I take the elevator). I usually avoid to go down stairs.

Keep going. Kerstin


hello and welcome,

you sound as though you were incredibly fit before your stroke

I hope you are recovering well

I think the message I am getting over all is that a little is better than none!


I had my hip replaced this past November, and though NOW my opposite knee is complaining loudly, I am trying to get back to my previous "normal." Except I'm now 3 years older and have spent much of the past 3 years sitting in my recliner.

I love to hike and I enjoy cycling. I live in a good neighborhood for biking as I have a fairly safe 7 miles which offers a choice of flat, little hills, moderate hills and big hills.

As I am trying to get my life back now that I can walk again I have set as a goal to do 20 minutes of some aerobic exercise a day. Yesterday my dog and I drove to a park and walked 6 miles with a total elvation change of @ 200'. This hike was more challenging then I remember from 5 years ago. (Of course it was 90 degrees F.) Will I ever get back to my former hiking ability? Probably not. But I'll do what I can, and see how much I can recover.

I'd like to add swimming, but I live in the area that had that famous water poisoning issue and I don't want to swim in poisoned water. Authorities say the water is safe, but when I had a cup of tap water coffee a couple of months ago I broke out in hives. I can now drink tap water coffee without hives, but until I'm sure the pool has been drained of the contaminated stuff, I'm not going for a swim!

Good luck. And--advice I hope I follow myself-- be persistent, but realistic. ( I know! A fine line.)


Hi Gina and thank your for your "Welcome"-

Yes we know eachother after Reading eachothers comments on this site for a long time.

Now I feel very sad for the first time today: You say that you have problem with your OTHER knee. But it was your hip that was replaced. Do you not Think it can have been because your prior difficulties and operation etc? What does the doctor say?

Hope to hear from you. Kerstin


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