Monday, 28 January 2013

It's all in the pacing.

Today I have over done it. Its easily done and it's frustrating when you realise how simple it would have been to avoid it.

To begin with I finally went and joined my new gym and did a work out. At my old gym I used to manage 20 minutes top of working out, and today I managed 45 minutes. Good perhaps, but it should have also my first reminder to slow down.

Then I cleaned the bathroom, had the sense to rest for a bit, and then went shopping for 3 hours with only one rest break. Definitely not enough for the amount of walking!

To top it all off I then had to do the monthly food shop with my other half. The problem with a monthly one means it takes a lot longer and you have to walk a lot more with no opportunity to rest.

Not one of those events sounds like too much, but combine it all in one day and you have one very achey and tired zebra.
The moral of the story? Know your limits and fit in your rest breaks!

Sometimes all you need in life is a bit of colour to pick you up.

Wednesday, 23 January 2013

Gym Bunny

I have spent my day off doing physio and then gym hunting, and I have to say, who would have thought that finding a gym to join would be so difficult!

There are numerous things to think about when you are contemplating which gym to join at the best of the times, and that just gets added to when you suffer with something like hypermobility syndrome. Below I've written a shortlist of things that most people have to take into consideration before picking a gym, and then I've added what extras some one with HMS has to think about.

  • Location - Is it within walking distance? If not, how will you get there? Is it close enough that it doesn't become a big deal to get there?
  • Price - What are your budgetary constraints? Are you planning on doing a pay as you go, or signing up for a monthly membership with a contract? How much can you justify spending on yourself? What's included in the price?
  • Facilities - What equipment are you mainly looking to use? Is having a pool something that is important to you? Do you want to be able to use a sauna/spa pool/steam room? 
So, that on it's own is enough to take on board. Add into that knowing that you are not "normal" adds the fun and games of the questions "Will they understand?" and "Do they have facilities that I can use even on my bad days?"

After an attempted visit to one, numerous phone calls, and a successful visit, I think I've finally managed to settle on a gym local to me. It's more than I was planning on spending per month, but it was then that I realised that I could only get what I wanted if I paid a little bit more.

An important thing to me is access to a good swimming pool and preferably a spa pool too. This is predominantly because, regardless of how much of a bay day I'm having, if I can get myself dressed and out of the house, then swimming will be something I can do. It's low impact and by having the spa pool there, the warmth of it and the water jets all help to sooth my muscles.

I'm so excited to go and join on Monday!

Friday, 18 January 2013

Snow Fun

Today the village I live in, along with much of the United Kingdom, was enveloped in snow. Fantastic fun surely? To a degree, but not always for a hypermobility sufferer.
Straight away the concerned boyfriend, who also has a very poor understanding of my condition, was telling me to go steady and not do anything unnecessary  My first thought was just that I wanted to play but I couldn't because everything was aching. That's my problem you see, when it's this cold, it makes my joints hurt, it makes my muscles hurt, it makes every millimetre of my body hurt.

Mum came to the rescue though, to save me from the insanity of being stuck in the house on my own all day. She walked all the way to my house, helped me get into a multitude of warm layers, collected my medication and walked me back to her house where I was fed bacon sandwiches, given hot coffee to drink and handed my medication. Once the drugs has kicked in, and I was thoroughly warmed through, the mother walked me home and put me safely back in my house. Sanity saved, I was left to chill out. In every sense of the word.

I'm gonna go ahead and admit, I googled for that picture, because I was lame and didn't take any of my own.

Anyway, digressing from the point somewhat. What's the deal with snow and ehlers danlos? Having an invisible illness means that at times, people forget that you may struggle more with situations. The coldness and danger of snow is one of these situations that a zebra may have to struggle with silently. The news programmes and the papers always remind you to check on the elderly and vulnerable in conditions like this; but they, along with everyone else, forget that there is a whole range of people who may be struggling without anyone knowing.

A small slip can cause a few bruises and a bit of discomfort for a healthy person, but for someone with hypermobility, that can be it. A dislocated joint, a broken bone, even just the shake of the fall can throw us out for days, if not weeks.

So please, with conditions like this, spare a thought for your zebra. Look out for everyone, and just be thoughtful.

Saturday, 12 January 2013

Read The Notes

Yesterday was not a fun day. My foot has been flared badly all week and yesterday it finally reached a point where I couldn't walk on it, and the pain was beyond anything I've felt before in a flare. My foot was swollen and I was in agony. I had to leave work.
So I made the arrangements and was told I could leave but that I should book in for an appointment at the drs before I left so they knew I was getting it checked out. I did just that and within half hour, I got a call back telling me that they wouldn't help me, that I had to go to A&E.
Off I went home, and then mum got me and took me to the hospital; where after a lot of poking, prodding and pain I was told that I've got to deal with it, that I've just hyperflexed at some point and I need to rest it. All of this could have been done at my drs if they had just read my notes before telling me to go straight to hospital. Instead, I wasted the time of multiple A&E staff, potentially stopping them from treating some one who needed it more than me. For that I feel terrible. Hats off to the doctor that saw me, I said I suffer with Hypermobility and he said "do you mean as in Ehlers Danlos", and he was very knowledgeable about it. Always helps to get lucky enough to get a Dr who understands what they're dealing with.
Anyway, here I am curled up in my zebra onesie feeling sorry for myself and drugged up on diclofenac. This is my weekend I guess.

Thursday, 10 January 2013

Zebra wears Zebra

Today I received my zebra onesie in the post. I think I'm a little bit in love with it.

It's absolutely perfect for chilling out in, and I think all HMS sufferers need at least one uber comfortable outfit that they can chill in or curl up in and feel terrible in. It should be something that is easy to get into, comfortable and it's a bonus if it's something that makes you smile.

Sunday, 6 January 2013

Support Places

Where does some one go for support when they have Ehlers Danlos Syndrome? It's an uncommon condition and that makes finding other sufferers much harder.

So where do I go for my support? Well one of my key places is Tumblr; if you search the tag of "Ehlers Danlos Syndrome" you will come across many blogs with the same issue. One of the main ones I follow is here. On this tumblr page there are multiple memes to remind you that you are not alone and there is also Q&As where you can hear from fellow EDS sufferers.

If you're based in the UK, then there's The Hypermobility Syndrome Association. There's also a reasonable amount of information on the NHS website (link here & here).

There is a lot of places you can go to for support, and different counties have various support groups. It is something that is always worth looking into if you feel you can benefit from talking to other people in similar situations to yourself.

Why Zebras?

One of the key questions that float around to do with the illness other than "what the hell is that, I've never heard of that" is "why zebras?".

There are 2 main reasons for this; one being illustrated by the picture below. In this picture, the red lines symbolise the key areas that pain holds our bodies. As you can probably notice, it almost is a zebra print in itself, hence part of the symbolism.

The second reason is a quote that I just learnt today comes from an old saying in medical teaching to encourage students to think logically; "when you hear hoof beats, think of horses, not zebras". Now this is generally a good rule for the most part. However not for EDS, with all the varying symptoms, it is an incredible hard disease to get a proper diagnosis for as it is frequently mistaken for other problems.

So, when you hear hoof beats, don't just think of horses, think of the zebras too.

Saturday, 5 January 2013

Lead Us Not Into Temptation

I have been led astray whilst at work into consuming a bacon roll. I blame my manager.

However, I am being good and using the stairs rather than lift; holding in my stomach to help with my abs and generally doing everything I can to be healthier.

Cup 3 of water too.

Maybe it won't be that hard to maintain this and to get healthy.

The Legs

I also use this video as I want nice legs, and am working on the theory that stronger leg muscles will do me good all round...
This is also partly down to me having had weak leg muscles in the past, causing my right knee to be far more prone to dislocation which is never fun!

The Abs

This is one of the key videos I have begun to use as the Blogilates channel was recommended to me by my physiotherapist.

I've gone straight to the 10 minute sessions as I am time poor and also have some experience of pilates.

There are beginners videos available on the channel too, which are much better if you are just starting out.

Friday, 4 January 2013

The Beginning

This is me of about 30 minutes ago.

This is me at the beginning of my journey. This is the year I have vowed to gain control of my EDS/HMS (whichever you prefer)

I know I am not fat. I am, however, at the heaviest I have ever been. Some doctors would call it a healthy weight according to their BMI charts. However, my joints are telling; hell, screaming; at me that this is too much for them.

I have vowed to lose a minimum of half a stone (just over 3kg), and no more than 5kg by the end of 2013.

I am also going to get my body into the fittest condition it has ever been, and sadly probably ever will be. Unfortunately this, realistically, is a degenerative disease.

To do this I am doing a routine of physical therapy that has been put together by the NHS for me; doing regular pilate either in classes or using POP Pilates on Youtube; and aiming to go to the gym as often as possible to swim, row and cycle.

Here's to what will hopefully be a happier, healthier 2013.