Exercising with Ehlers Danlos Syndrome, Hypermobililty and PoTS

So, this being Ehlers Danlos Awareness Month it seems like a good opportunity to blog about exercising with Ehlers Danlos Syndrome - I have the Hypermobility type - and also the associated problem of PoTS (that's postural orthostatic tachycardia syndrome don't you know, now breathe!)

(A hypermobile big toe, yesterday)

Here's the lay person's 'in a nutshell' guide to what these two conditions mean for me: widespread pain in almost every joint or muscle at some point during every week; chronic fatigue and flare-ups of acute fatigue; and fainting fits. All caused (it is theorised) by weak or over-stretchy collagen throughout my body and being genetic, that's never going to change. The stretchy collagen means that the ligaments which keep 'normal 'joints within 'normal' range are overstretched. My joints pop out of their proper position all the time - or as the witty cartoonist Hannah Ensor puts it 'my joints go out more than I do'!

In terms of running the main challenges are my knee and ankle joints, which are really unstable. Thankfully, since being diagnosed I've had excellent support (PUN!) from my local NHS podiatry and physiotherapy teams. I usually walk with the custom made orthotics pictured below in a neutral trainer - the above purple Saucony's being my current running trainer of choice. 

As an experiment though I was recently fitted for new trainers at Run4It in Glasgow and have opted for a more supportive trainer which I'm going to try without the orthotics and see how that feels. Also they are blue and well-snazz.

There are much more detailed explanations of both types of EDS here and PoTS here so I'm not going to repeat any of that but it should be clear from the above description just why exercising might be a challenge for someone with EDS.

It took over ten years for me to be correctly diagnosed and at that point I was housebound for much of the time. Once I had my diagnosis I began reading as much as I could about my conditions (there's lots more about my life with EDS and PoTS on my old blog for anyone who is particularly interested in that story).

I decided that for me (I would never tell anyone else what they should do with their body) getting stronger and fitter was something I could do to improve my overall life. It made sense to me that if joints are unstable and ligaments are stretched then the one thing I can have some control over is my muscle. Ten years of semi-regular bed rest had left me with very little muscle indeed and having never been at all sporty or strong, building it up is taking time. But the improvements are amazing. I can carry small shopping bags home again from the supermarket, for example, something that had become impossible for me in my early thirties.

I am absolutely convinced that I will be able to lift that bottom 10kg weight by the end of this year. I started with 0.5k weights last year and I'm now up to 8kg. Grrrrr!

Since entering the Tri-Together triathlon last year I've been really inspired by some of the stories I've read online from other people with multiple conditions and EDS. Two of my favourites are Donna's Beating Limitations Blog and Lara Bloom's story of doing the London Marathon which has been made into a documentary that will be screened at several cinemas this month. 

(three quarters of Team4Ply at Pollock Park Run last weekend)

And last but not least, exercising has also helped me make some tremendous new friends.

Every member of Team4Ply has had their own challenges in getting this far but we are absolutely determined to do the best we can on May 25th and we thank you all for your support so far. If you haven't donated already (or even if you have!) please do so today by visiting our Just Giving Page .

Don't forget that you can win PRIZES! by donating to our Just Giving Page. You can also donate by text: Just text TPLY49 £5 (or whatever amount you want to give) to 70070 


**The fancy new term for this is self management and if you go here you can see me looking uncharacteristically glamorous as I received the award for 'Self Management Champion of the Year' in the Scottish Parliament last year. Ooh la la!

Running in Berlin...

I'm not quite sure what kind of crazy transformation has taken place for me to have even contemplated keeping up my running training while on holiday but something has definitely shifted mentally because when packing for a five day trip to Berlin the other week I found myself thinking 'I should pack my trainers, I might go for a run'...

And indeed I went for two runs while in Berlin. We were staying near a park called 'Vollspark Friedrichshain' and for my first run I managed about 7.5k:

Of course, being me, in a new place, I got lost on my way to the park and ended up in a cemetery by mistake. I was worried that I might be flouting some bylaw or cultural norm by jogging round that in brightly coloured clothing so I big a hasty retreat but not before taking a pic of some very impressive headstones:

Everyone else jogging round the park (and there were LOTS of them compared to Glasgow/Paisley parks at 7am) was jogging anticlockwise. Once again I was worried that I might be transgressing but nobody arrested me so I think it was OK:

On my second run I did just over 5k but managed to go a bit faster than usual. Berlin is wonderfully flat. There are cyclists everywhere and it is really lovely to run (and walk) around. If you get the chance to go there I heartily recommend it. 

You don't have to run though. You could just go for a beer!

What a difference a day makes...

Twenty four little hours after a very dispiriting run it was time for Purlpower to strap on the trainers for the second time in a weekend and head into Glasgow to accompany Lilith on the Glasgow Frontrunners Rainbow Run celebrating LGBT History Month.

This time the omens were a little better. The BBC weather report was encouraging:

And the sky above me as my train pulled into Glasgow Central was as blue as my fingernails:

Each runner in the Rainbow Run is allocated a colour according to their month of birth so being a September baby I was true blue all the way. The 'start' sign was reassuringly non-flecked with mud, it was time to run!

Seventy rainbow runners headed off along the Glasgow Canal towpath. A fantastic place to run, close to the city centre but it felt like a world away - I'm embarrassed to have lived here so long and not realised this great footpath existed. We had a choice of running 5k, 7.5k or 10k. Now that I'm running 5k on a regular basis it seemed a good time to challenge myself and try the 7.5. And with Lilith to encourage me it really wasn't too bad at all. The route was traffic free and mostly flat (apart from a hill up to the canal path right at the beginning) and it felt great to push myself to go that little bit further.

Those all important Map My Run stats at the end told us that I had managed to run my 'fastest ever 5k' and had an average pace of 6mins 22 per kilometer. *SNORE* Sorry, getting a bit stat-obsessed of late...

Of course the best thing about running is the guilt free binging at the end and we were not disappointed with the selection on offer. Lilith was introduced to the kiddie party staple of 'Top Hats' while I tucked into a rainbow cupcake...or two. Celebrating every last crumb of diversity.

And if you want to see what a running rainbow looks like I recommend you take a peek at the Glasgow Frontrunner's Facebook Page because we do look rather snazzy if I do say so myself.

Park(run) Life

Sometimes it can seem like the universe is telling you that running is a really bad idea. When Paula and I were driving to Parkrun in Victoria Park yesterday every atom in the world seemed to be united in one message: Do not run today.

Parkrun is an amazing phenomenon. Many parks across the world - and three right here in Glasgow - offer the chance to run a free, timed 5k every Saturday. It's a not-for-profit organisation and all the runs are staffed by volunteers. Big up to the volunteers.

Since the beginning of 2014 Team 4ply has been sporadically attending the Parkrun in Pollock Park but we'd heard tell of another Parkrun, in Glasgow, with LESS HILLS and so we'd decided to set our sights on the mythical flatlands of Victoria Park this week.

Unfortunately this coincided with one of the wettest weeks in British history and we both felt a bit rubbish. Paula was adjusting to some new meds causing her to be proper glaikit. I'd spent the past week transcribing for about eight hours a day, was knackered and starting to hear things.... At one point I was curled up in the front seat of Paula's car pretending to go to sleep. When I opened my peepers, this was the view:

If a motorway could talk, this one would say 'go back to bed you pair of numpties, this running lark isn't for you'. In fact I could almost swear that's what it DID say...

But if Team4ply is anything, it is stubborn to a fault. So we went to our first Parkrun at Glasgow's usually delightful Victoria Park. I've been to Victoria Park on lovely spring mornings, had fossil fun in the Fossil Grove and taken a gentle stroll round its dignified swan pond.

But it looked rather different yesterday:

Rain had fallen, rain on mud, rain on rain. Most of the track seemed to be submerged under water. I was testing out my new 'seal skins' socks (they're not made of real seal skin, stand down vegans!) which are supposedly waterproof. I can report back that they do indeed keep your feet dry, however a small pond of water was collecting inside my trainers and was then trapped between trainer and my impermeable sock. Giving me the sensation of running round with two carrier bags full of water wrapped round my feet. Like a human stumbling 1970s waterbed. Not pleasant.

Just waiting for the fella to shout 'go' was torture; we just wanted to get this over with and get home to normality. But sensibly every Parkrun begins with a brief safety chat and an explanation of the route ahead. A few shivery minutes later, we were off....

This was our view for most of the run, i.e. from the very back, through the grey. This week Paula and I were trying an interval method of running for two and a half minutes and walking for one minute. And it just seemed like a real slog. Our legs simply did not want to run or walk. They wanted to go home to bed with an electric blanket and be positioned in front of a telly watching Labyrinth or maybe The Muppets.

But we battled on: three laps of the soggy, puddle-ridden park and then finally the finish line:

Paula achieved her Parkrun PB* and I found out that while I like having dry toes the sensation of running/walking on water ain't all it's cracked up to be.

We had survived another run together. We had a newfound understanding of the benefits of hills (namely, that water cannot gather at the top of them). It was time to go home, have a cup of tea and watch some Muppets....

*That's 'personal best' - we're runners now dontchaknow!

Introducing Purlpower!

Greetings, I am Purlpower, aka Ricey, aka Helen and I make up the third strand of Team4ply.

Until last year I had not competed in a sporting event, willingly, since primary school. This is me, coming second in Portway Junior's egg and spoon race circa 1983:

Somewhere around puberty I stopped enjoying pretty much any physical activity apart from walking. I contrived to avoid every PE lesson by fair means or foul. In my twenties I started having trouble with even the walking and 'normal' everyday life. I had joint pains and muscle aches and increasingly I found myself unable to stand on the commute to work due to chronic fatigue and pain. I was fainting more frequently too and breaking out in heat rashes. It took nearly ten years for me to get the diagnosis that made all these things make sense: I have the genetic condition Ehlers Danlos Syndrome and the associated problem of PoTS.

But during those ten years, before getting diagnosed, my world became smaller and smaller. I spent five years unable to work and doing less and less and less. Knitting was really important to me; it gave me something constructive to do with my hands and it was something I could do while stuck at home instead of being sucked into the dangerous realm of daytime TV.

In April 2011 I was admitted for intensive rehabilitation at Inverclyde Hospital and at that point I needed to rest after everything; even making a cup of tea was an almighty task. But whilst there I learned some important lessons from the physiotherapists and occupational therapists and faced some hard truths. The most crucial thing, for me, was to accept that I was not going to just wake up one day and feel better, the way you do after a bad dose of the flu or a dose of food poisoning. Chronic illness isn't like that: the less you do, the less you become able to do, without intervention - for most of us - it's a downward spiral. Once you realise this the question has to be 'how can I reverse this spiral?' and the answer, for me, was 'do more physical activity'.

After the crisis point of hospital I had the great help of a community physiotherapist and I set about restoring the muscle strength that had withered away. The exercises were simple, repetitive and boring. Really boring. But they worked. And after about six months of doing exercises at home and combined with controlled walking I was ready to take it to the next level. For me that was swimming - one of the best exercises if you have sore joints as it is low impact and your weight is supported by the water.

On my first swim I managed to do just one length. The following swim I did two. I kept going swimming for a few times a week, very gradually building things up until the day when I did 30 lengths without really thinking about it. That's when I knew it was time for a new challenge and coincidentally I saw a poster for an 'all abilities triathlon' and, on a whim, decided to enter.

So the summer of 2013 saw me choosing to cycle, jog and swim on a regular basis. And to my astonishment I found that I actually enjoyed the running! I also met the lovely Paula (Team 4ply's fourth strand) and found that running with a pal suited me very well indeed. The triathlon day was truly one of the best days of my life and made me think 'hm, I wonder what I can do next....'

Doing a marathon though...even a bit of one...well, that's still quite a daunting prospect. One of the things that will keep me going is knowing that the MS Society is doing hugely important work. Scotland has one of the highest incidences of MS in the world but the reasons for that are still unclear. You can read more about MS Society Scotland and how to get involved here .

And please do visit our sponsorship page today - it's February, yesterday it was sleeting and hailing and we really do need all the encouragement we can get!