I would like to hear from you as to how you manage to keep fit.
As all Lupies know, some days you can walk half mile, other days you are lucky to be able to get to the toilet.
I am putting on weight due to steroids, age and being so unfit. My kids take the mick out of my batwings and my wobbly bottom and thighs. Enough is enough.
You hear all the time that we all need to exercise to be fit and healthy (well hopefully a bit healthier in our case). However I asked my rheumy nurse what I could do to keep fit and her answer "Don't you even think about exercise, you have a chronic illness, exercise is thae last thing you want to do" Not really the answer I was expecting!
I don't want to walk up Ben Nevis or swim the channel, but I do want to do something.
All suggestions welcome
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tiredmum
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Hi tiredmum ..... great question! That nurse needs to update her thinking and her attitude! How negative!!!!!
Exercising or rather movement - no matter how much (or little ) - has a positive effect on the body, mind and soul. Gets the systems stimulated and releases feel good chemicals in the body... now that can't be bad!
Water is a great medium for exercise. It supports tired limbs and sore joints while you gain movement. You don't even need to swim if you don't want to ... just walking in a pool offers support and resistance and you move through the water. It is a great start and bonus is it gives you some you time <3
I am also a great supporter of yoga and practice twice a week within a class environment. Again you work within your limits and don't be too hard on yourself! A great time to look after yourself - leave the days hassle outside the room for the time you are in ....
I was diagnosed with Lupus a life time ago and respect the limitations that it can impose.
I am now a Zumba Fitness Instructor ( I still look at myself and cannot believe it ) and am teaching my own class. I have lost 30+lbs over the last year.
Just find something you enjoy and the positive results will sneak up on you!
We are all different in which exercise we choose to do but there is one thing that is certain - exercise is very important. I won't repeat what Fruitloop has just said but add that if we have painful joints and muscles our muscles tend to loose their strength and this is very bad for us.
Any exercise is good including being active inside and out and not sitting down for long. I must admit that I continually have to fight to make myself exercise because my inclination if I don't feel too well, is to rest. I don't attend any gyms or classes but do physio exercises for my knees and back which are very helpful and reduce my pain.
I hope that you find the right answer for you, Tiredmum
This is the toughest question of all. And whatever answer works for you is correct. Problem what works one day perhaps wont next week, Also, the fatigue generated by exercise can be delayed for a day or two, which is confusing and if not accounted for can seriously trip you up. Imagine having a long and vigorous walk one day and budgeting the next for rest, but come the next day you feel fine and decide to do something active. All too easy to overdo it and pay high price.
I walk my dog for a hour twice a day, on weekends i walk longer and in new places. I stretch and do T'ai Chi foundation exercises, If I am in good shape, I do 10 press ups ( many years ago I would do 100 morning and night) And best of all I air punch. I use a combination of shadow boxing, karate kata and Kung Fu techniques. This means that I get a well balanced muscular workout without too much jarring or damage to joins and little risk of tearing.
For me it is whitewater kayaking, walking, Tai Chi, Yoga and a bit of cycling as the weather gets better. I haven't done any indoor climbing now for nearly a year and no ski-ing this year as the conditions have been poor in Scotland.
However........it is all about what you can sensibly manage and taking appropriate rest time.
After my big flare 12 years ago washing the car was a massive (and near impossible) challenge.
Stay positive and do what you are comfortable with.
If you can afford it get a Nintendo WII KEEP FIT you can do as little or as much as you feel like when ever you want. I really struggle with exercise but love to dance so bought the dance one and occasionally I get to do some. A good feeling. Take care x
Make the best of a good day, the worst thing to do is to sit about. Know your limitations. I bought a vibro machine that I stand on and a treadmill. You don't have to walk fast and it supports you. hope you find the answer that suits you personally, Good luck
Wow im put to shame i struggle to walk the dog to the post box and back.
One thing i used to do but havent done for ages is when your farovite song comes on the radio or tv programme starts you have to dance you could get the kids to show you some moves and i found when i sat down again i feel warmer and happier you could make it in to a race so soon as you hear a song have a boogie i do it in the car and sing your heart out. I think this is a great start and see what you fancy i have xbox 360 with kinect but i find it to much a the moment. Good luck
To help rebuild my stamina - I have an exercise bike and go on this each night - this can range from a minute to 5 or more depending how i am feeling that day. I also have a video/DVd with light exercise, stretching and toning with I do. i also have a very small dog and weather permitting we go for lovely walks. Exercise is not all about getting hot and sweaty or full on cardio work outs. I could not do this anyway due to having a mild heart problem caused by my lupus. I put on 2 stone with the steroids and it has taken 14 months to lose just over a stone - with gentle exercise and watching what I eat. I still have a further 10lbs to lose before I am back down to my weight - but having started the above regime in Jan this yr, with my Consultants advice, I have notices that my energy levels are starting to increase. I also have notices that i have not needed a sleep as much in the afternoon. I also noticed that i am starting to think a little more positive! As much as i hate to admitt it gentle exercise does have its benefits!
I was an exercise addict (did 20 mins on exercise bike, 3 hrs dog walking & 1-2 hrs cardiac per day for years),from being a young teenager, had a few years off (when homeless), was a gardener for 2 years & then got back into re-bounding, belly & bollywood dancing, walking etc etc last year, but now I sometimes struggle to walk 1 mile! especially with shopping...I keep having to take mini breaks! just so's I can get home!
I'm only 40 & the fatigue etc has really had an impact on my fitness levels :(, feel so weak & lame but don't know how to change things... I did make myself do a half hour dance the other week & at the weekend I danced for 10 mins whilst my fella was baking :0).
I too suggest that you do as much as you can, whilst you can & are able!
I know I need to push myself more to do ANY exercise, 'cause some, is better than none! time to get my 10 min sessions exercise DVDs out asap me thinks!
Hi tiredmum, I find it difficult to exercise as I have pulmonary fibrosis (damaged lungs) caused by the lupus. I go to the toning suite three times a week when possible and the tables and chairs more or less do the exercise for me. This really helps to tone your body especially if you loose weight.
My weight is always up and down because of the steroids so when I am not having a flare up I use diet chef to keep my weight down as it gives me my meals for the day.
My Rheumy nurse told me to lose weight cos my joints were telling me enough is enough.... & heres me thinking Lupus was an auto immune disease...
She also said I need to excercise more & I CAN excercise up to aerobic level so maybe some Jogging ??? Now that would be great if simply getting out of bed left me drained and a walk to the shop left me fatigued for 2 days... Also being 11 stone overweight I think Jogging might actually cause more damage to my joints than anything Lupus can throw at them...
You already know the answer to jogging! There are other forms of aerobic movement that you can do, nothing with high impact. Simply walking is good.
Water is also a great medium for exercise. It supports tired limbs and sore joints while you gain movement. You don't even need to swim if you don't want to ... just walking in a pool offers support and resistance and you move through the water. It is a great start and bonus is it gives you some you time <3
I visited my GP and was refered for excercise on prescription,best thing I ever did!! I now go to the gym twice a week,feel fitter lost weight and made new friends. All activities are supervised and set to your own personal capabilities,give it a go!!!
Another one who has put on weight over the years - steroids not helping!
I did the Expert Patient course last year and one of the things I found really useful was that they emphasised how important exercise was but then told you to break it down. If you feel you can manage a walk, fine. If all you can manage is five minutes, do five minutes. Then later, try another five. If you can't manage to get out of bed, try a few stretches. It's surprising how satisfying it is to manage even a bit. And if it one of those days when all you can manage is opening your eyes, don't knock yourself out over it.
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