Why a can-do attitude is so important

Battling a chronic illness means that you are constantly faced with  things that you can't do, or join in with or just fear doing. When you are in pain, exhausted, emotionally drained and just generally not feeling well, it can become almost impossible to pick yourself up and go about life in the way you want to.

In some cases, patients are simply too poorly to carry out normal every day tasks, let alone embark on careers, holidays and social events. This is a whole other battle in itself. However, facing an illness where you do have your good days, and you can manage the pain and symptoms to some extent, mean you have these fleeting times of feeling like you can do it. Whatever it is, being traveling, a weekend away, going to work for a full week or just having a night out with friend, you feel able and ready to take it on.

Hypermobility syndrome is a limiting condition, and as I have written many times before, impacts life in a big way for those who have it. It's important when you have plans, no matter how big or small, to plan. You need to ensure you have treatments with you, be it painkillers or a hot water bottle and that you have plenty of support available should you need it. I am a big planner, and it has meant that I have been able to do so much that three years ago, I would have thought impossible.

When I booked a trip to Isle of Skye with my friends, I was in the first instance really excited, and then began to worry. We decided to drive, and believe me, it is FAR. We were in the car for 14 hours going up, with a few stops to eat and stretch. Needless to say, I needed a heat pad, lots of leg room, ibuprofen and some serious relaxation during and after the journey.

Skye is very much a walking and scenery holiday. It's different to anything I would normally do and I accepted from the off I would be limited and went there with a nagging worry that I would really hurt myself or end up laid up in bed with a dislocated hip. However what I also went with was a can-do attitude, good trainers, a list of exercises and knowledge of what I can do and what i can't. Yes, I have to refrain from doing as much as my friends, but I can still do plenty. I can still go on days out and walks and travel around, I just have to do it for me, within my limits. So that's what I did. ( I also looked up and located the nearest A&E, because you know, life and all that.)

I did have to hang around on the side of a giant hill while everyone else went all the way to the top, which wasn't ideal, but I still went, and I still gave it a go and I got to take amazing photos and sort of play in some snow (let's be honest, snow isn't for the hypermobile). I needed help getting down and I had to take painkillers in the evening, but to be honest, I need this most days, sometimes even on stairs, so it wasn't much different.

I went out everyday, walked really far, climbed a bit, tasted whiskey, saw some rainbows, saw an eagle, saw a seal, drank lots of coffee and ate loads and I am so glad I did. I kept check of my joints and pain, used heat when I needed it, luckily had a friend with an electric massager, took hot baths and took everything slowly and carefully.

I mean , there was a hairy moment when I couldn't cross a river (I didn't realise this was going to be necessary as it wasn't on the walk list or map) and I had to rely on the patience and good will of my friends to help me, but despite the ten minutes of joint pain that followed and the back ache that evening, I felt good. Everyone felt a bit like an intrepid explorer, but I felt like I had conquered something more than a 9k trek.

Having an can-do attitude means I think more about things in advance and I come up with ideas of trips I want to do, places I want to go and friends I want to visit. I think foremost about the experience, and then I do the planning and logistics of doing these things with a condition. If I can't do them, i can't do them, at least I have other things floating around my head to keep me going. it'll never stop being frustrating, but it will also never rule my head.

When I was first diagnosed and in constant pain that was managed badly, all I wanted to do was lay in bed or in the bath. I stopped exercising and the idea of going away and being on a plane or in a car was laughable. Now though, I just think 'I can', until I realise I can't, and that's okay. The positive thoughts alone make a big difference. Sometimes just lounging on a sofa in front of a fire is enough of an experience.

Travel Survival Kit- Hypermobility can't clip your wings

Who doesn’t love holidays? What should be an exciting little stint away in the sun (or snow, if you’re that way inclined) can turn out differently when you have some extra baggage. Carrying around an invisible disease like hypermobility syndrome is stressful, painful and often off-putting.

Most sufferers will have there home set up in a way that means they can get themselves comfortable, access things they need easily and not to have to worry about coming unstuck in an emergency. “I need to be picked up off the floor, my hips has come out and I can’t move.” Happy holidays everyone!

I’ve done a fair bit of travelling since I was diagnosed and can remember dreading the first plane journey I did PD (post-diagnosis, for fun). I had just about got used to sleeping without being woken up by extreme shoulder pain and started worrying about different beds and coaches and plane seats and train journeys. It’s not fun, but you realise you just can’t help it. Most savvy people will pack their painkillers and so on, but if you’re going somewhere a bit unconventional or backpacking, there’s plenty of objects for your survival kit you might never have imagined.

Three years and I am happy to say I flit away without barely a second thought now. My pain is well controlled, which is very fortunate and helps, but I now have a hit-list of important joint crime-busting items.

Cotton wool- This sounds weird, but if you are travelling with a rucksack and you know you’ll need to carry it a fair bit, buy yourself a few of these and put them under the straps. They’re the perfect cushion. I have a travel cushion, but it's awkward to carry and I don't find it that comfortable after five minutes, so don't bother with it.Also cotton wool is SO handy, for like nail varnish emergencies and such. You can pick them up for about 40p so it doesn’t matter if you chuck them.

Deep heat and freeze- Probably obvious to anyone who has hypermobility. Our muscles work much harder to pick up the slack from joints so when the aching it starts, it really starts. I find only the Boots brand really helps me, and others I have spoken to about muscle pain relief have always had a preferred brand. Take it with you. I forgot mine when I went to Thailand and couldn’t find anything nearly as good as what I would use at home.

A big thick jumper- The bigger the better. Hopefully you won’t need to wear said jumper on your lovely sunny holiday, but if you can fit it in the suitcase, I recommend. You can fold them up to add an extra pillow, lay on them to cushion your back, put them between you and a rucksack, rest them around your neck on planes or just sit on them when you need something soft. Jumper-pillow-cushions have been a lifesaver for me at festivals over the last five years. Hotels often only provide one crap pillow and if you’re in a hostel you might not be able to get another. Also, if you do get cold…

Massage balls- They look a bit like colourful sea creatures. You can get them on amazon for about £6 for three and they are definitely worth it. They’re also small so you can chuck them in your handbag. Hotel beds and particular hostel beds are not always forgiving on sore joints. All you have to do with these is stand against a wall or sit up straight on a chair with a back and roll the ball around. If you get particularly good at it you can even get knots out.

http://www.amazon.co.uk/PhysioRoom-Spiky-Massage-Stress-Reflexology/dp/B005LJVREI/ref=sr_1_4?ie=UTF8&qid=1411139373&sr=8-4&keywords=back+massager+ball

Don’t forget your trainers- Earlier this year I was in Paris with my friend and we walked miles and miles. I packed a nice pair of shoes for looking nice and wore dolly shoes to the airport. Two days later, there I am in a Parisian McDonald’s sitting crippled over some chips and a coffee. Never again will I not take trainers away with me. Even though I had been untroubled for weeks before this, I was troubled for weeks after just because my shoes didn’t support me properly. It was even warm enough for the nice shoes anyway. Le sigh.

I spent last week at a music festival in Croatia and spent the last three nights using a big hoodie as an extra pillow. When back ache calls, you gotta answer with something. Hypermobility is a pushy illness, but there is plenty out there to help shut it up. 

Oh and Croatia by the way, is BEAUTIFUL.