What sort of activities &exercises do you do with yourHM

[TheNeoMod]

Hullo!

I'm looking for a bit of advice re getting this funny body fit! I know that as a bendy person health and fitness should be a major priority - but I hate the gym! I do love to walk and do it every chance I get but it is scotland and it rains all the time - which does scunner my plans. Also I cant swim - I had a massive mole on my leg that took 4 opperations to get rid of and only got rid of it fully last year - so was far to embarrased to go and now feel a bit to old to learn.

But I am thinking about martial arts. I know it can be strenious but things like Tai Chi just bore me, and my physio and rheumatologist told me not to even consider piliates or yoga. So I really just want to know if any one does martial arts and thinks its a good idea for me to start?

I'm really keen and so is a friend of mine who wont let me go on my own (just in case) and just looking for some advice from the smartest people I know on the subject of bendyness!

Cheers muchly!!

Shaunty

[Spireite]

I don't know about martial arts (but I do run and that is strenuous). But pilates (which I find a tad boring) is good for us bendies and challenges the key core stability muscles, which have to compensate for our lax ligaments as the next best thing. Don't be embarrassed and give swimming a go. I'm blind as a bat in the pool without my lenses and I bet a lot of other people are too, as well as being engrossed in their own lives.

[Purplesheep]

Pilates is definitely recommended as far as I've heard, it can be a bit boring and not very challenging (depending on how fit you already are), but as Spireite said, it helps build up the core stability muscles. Cycling is also meant to be good, I think, but it might not be compatible with the Scottish rain

Martial arts are usually not recommended because they involve a lot of high impact and often have a very high risk of injuries. I did Ju Jitsu until about a month ago, I did it for 1 1/2 years in total and my HMS problems got much worse in the last 6 months of that. I think it was because I started training at a different club, where they never did any stretching before the training - one warm-up consisted of doing 200 (!) sit-ups and 50 press-ups. I soon returned to my old club but I still kept on getting several sprains and pulled tendons, which have never healed properly. At the time, it never struck me as unusual that I got injured so much because injuries happened to everyone all the time. Jitsu involves a lot of armlocks and lots of people commented on my "weird" arms, but as my elbow bends much further than normal, I could never tell when the lock was working until my arm was bent much too far. Eventually, I decided to quit because the pain was too much and I probably couldn't have got my next belt anyway.

That's just my experience, it depends very much on how badly your HMS affects you and also which martial art you're doing. Did you have a particular one in mind? I'm considering going to an Aikido session, which as far as I know is a less violent version of Jitsu. It still involves a lot of locks and throwing, and has a high risk of injury, so I can't bring myself to go to it. You could always try it and stop if it doesn't work, but generally there is a great danger of getting injured or symptoms worse.

[jojackson]

This is such a helpful thread!

I'd personally be terrified to try martial arts, given that I dislocate things in my sleep, which I have always assumed to be fairly low-impact.

I'd like to swim and used to quite enjoy going to the gym, but now find that I have so little energy even getting through the day feels like an achievement most of the time! I find it quite frustrating that I don't always notice the 'right' time to stop - I might stop whatever I'm doing at the first sign of pain, but then still not be able to walk for two days afterwards, which is really difficult. I am beginning to learn what I can and can't do, and feel quite encouraged by the things that have been suggested in this thread. I may not be able to walk far, but I can make better use of my sitting time!

It sounds as though lots of you have done pain management programmes (I'm waiting for mine at Stanmore), and I'm sure that pacing will be a key skill for me to learn so that I can try to get back into exercise. I'm sure it will make things better in the long run, or at least prevent further deterioration, but it's so hard to feel as though I'm at such a low starting point!

[dragondee]

Hi Jojackson,
Its taken me about 3 years to get to about the lowest level in pilates and about the same to swim from absolutely nothing to now.
I swim in a 12m pool and do about 30-32 lenghts twice a week.
It takes us a long time but we get there in the end.

I went on the 'expert patients' program and they helped me to set realistic goals.
The first I remeber is 'walking with better posture'
it took a while and i do have relapses.
So try and think what walking shall i do today - maybe up the garden and back (if you've got one) then carry on for at least a week then progress slowly, say today I can go one and a half times.

It might seem very slow, but you'll be surprised, you can progress.

Good luck with everything
Dragondee

[jojackson]

Thanks, Dragondee!

It's so easy to get into the mindset of 'I can't do it and therefore I'll never be able to do it'! It's great to hear that you've achieved so much with such a lot of hard work. I think walking is a great suggestion (I don't have a garden, but I do have a 30 ft balcony), and I'll definitely try to remember good walking. It's easy to get carried away and focus on quantity rather than quality, but I'll try my best.

In fact, I'm going to get up from my seat in a coffee shop right now, and walk WELL to my interview!

Thanks, Jo

[TheNeoMod]

Hello again!

I knew all the cleverest people in the world would have some advice for me! Your always so helpfull! And I just found out that a lodge a few of my friends are going to has a hot tub so need to get rid of the jelly belly asap - or face wearing a rather unflattering dress over the swimming costume.

Now all I really need to do is pull my finger out and get something done - again thanks to all!

Shaunty x

[Slapshot]

I try to do as much non-impact activity as I can, this ranges from archery which I am starting again in October to indoor cycling to ice skating and non-checking ice hockey.

Ice skating is great as you can burn up to 1000calories per hour but as it's a gliding motion, I find that as long as I wear my knee support (and warm bottoms!) that my knees are generally fine The only issue I found was that it's very important to get the right pair of skates, as due to our bendy legs we cannot adapt as easily as other non-bendies.

[wildfire198]

I've just been bowling this evening and have discovered I don't think I can do it any more, as it effects my (subluxing) shoulder and my wrists . Pretty sad about that one.

I find going to the gym quite fun - never thought I'd say that! But if you've got some tunes on, and you just sort of get into it, it can be pretty good. And it's nice to go with someone, if you have a friend or partner or whatever. Swimming is good, as a lot of people have mentioned, I'd just say to take it easy, as if you have bad shoulders, it can affect them (it does me, unfortunately).

Same with martial arts - I used to do kickboxing at uni a few years ago, and loved it, then started up again at home, and did my hip in with one of the exercises! It can be incredibly beneficial, though, as long as you're careful. I saw a video on youtube about a family who lived with Ehlers-Danlos syndrome and the father was a martial arts instructor, and he helped his son to keep fit through the sport, whilst looking after their joints.

My physio liked the fact that I was doing Wii Fit as well, so that's a good one to do .

[Flora]

Am currently enjoying aquaerobics once a week with a friend. Some of the exercises are too much, but the instructer is really good at adapting them for me. It's also fun, though the balance work with the woggles does mean i fall off a lot!

[Tibisca]

Hi, I do aquarobics as well, the rest of the class have got used to hearing a splash and me emerging like a drowned rat when I lose my balance!
I dont fall over/off the woggle so often so that is improvement, but I dont think I will ever finish a session with dry hair and makeup intact as the others do

[clicker]

When I saw Prof G I told him that as a child I was a competitive ice skater, he said that Ice skating was a very good exercise for the core stability - but only if you are able to skate without falling over. So I started again, whilst I am on the ice, I rarely get any joint pains but when I get off and walk it is incredibly painful because the joints seem to moan over having to contend with the impact of stepping and friction. I do get some strange looks when I skate so smoothly and as soon as I get off I have to grab my stick because I cannot walk properly. My only dilemma is, how do you explain to DLA that you can't walk but you can ice skate because they so seriously do not grasp what happens to our joints!
I like to swim but it is difficult to find a pool where I live that has water that is the right temperature as nearly always it is far too cold and within a few minutes I feel really painful.

Sue

[Es*]

I do get some strange looks when I skate so smoothly and as soon as I get off I have to grab my stick because I cannot walk properly. My only dilemma is, how do you explain to DLA that you can't walk but you can ice skate because they so seriously do not grasp what happens to our joints!
I like to swim but it is difficult to find a pool where I live that has water that is the right temperature as nearly always it is far too cold and within a few minutes I feel really painful.

Sue

Somewhat off topic, but bear with me. What you said reminded me of it. A few years ago I got turned down for a wheelchair because my phyio report said I could swim several hundred metres pretty well (backstroke). In a stroppier moment (while crying, as without a new chair I wouldn't have been able to start uni) I wrote a rather sarcastic response confirming that yes, I'm pretty good at swimming, and I'm better at walking in water than I am on land. I thanked them for their alternative suggestion and asked for confirmation of when they would be flooding my university with warm water, as that would then be entirely relevent to my ability to travel anywhere. The following week I got confirmation that I would, afterall, be able to get the new chair I needed.

[eilaroc]

Es, I love it.

As for me - I swim twice a week, 20 lengths a time. As a non-driver I walk quite a lot. And I go to Pilates, where I regularly appal the rest of the class by finding higher levels of exercises much easier than the lower levels - probably due to my hypermobile hips.

[nemonie]

RE: finding out about pool temps. I have been attending hydrotherapy at my local hospital and have finished my allotted sessions, but they recommended I continue in my own time and gave me a sheet of info with a list of the local pools which are accessible, how accessible, if they have warm water days and how warm the water is and when those sessions are. You could maybe ring up or visit your local physio/hydro department or the council (bit in charge of leisure centres and stuff) and ask if they have a similar list. Or just ring round your local pools and ask if they do warm water sessions