8 signs you are living the chronic life

Being chronically ill, as I have written so many times on this blog, is a way of life. What it isn't though, is your whole life. I think most people who suffer with such conditions know that there is a lot of importance in making sure you don't let health problems consume you. I try to make sure mine don't but taking a light hearted approach where possible.

Don't get me wrong though, there are still days I want to scream. But anyway, here's something a bit light hearted to go with the chronic life hashtag I've been enjoying keeping tabs on lately.

1) You often find yourself wondering if you are on fire because yet again, you've slapped on too much Deep Heat and certain parts of your body feel like naked flames.

2) You can often be found blankly staring at people mid-conversation and struggling to remember where/who you are due to chronic fatigue. Great if you want certain people to not speak to you again, not so ideal if you're in a board meeting have 12 people staring at you.

3) You have four meals a day. Breakfast, lunch, dinner and meds.

4) You are tired. Tired is you. You are one.

5) You have been in the shower and started wondering if you could live a full life if you never got out. Getting in was effort enough, Getting out doesn't seem plausible.

6) You really enjoy small victories like taking off your bra with one swift movement because you can bend in unnatural ways. YAY HYPERMOBILE JOINTS.

7) You haven't had a good nights sleep since the 90s.

8) You have a super power where you can always be more tired than everyone else.

5 awkward hypermobile situations- Part 3

So part 3 of this series focuses a bit on things that other people do that cause stress. And stress in general. I've had number 5 and 4 happen to me recently, so here is my rant for the week:

1) Trouble eating? Jaw dislocation and pain in hypermobility is not uncommon. Sitting at work or having lunch with friends or even eating dinner at home on the sofa- there is no ideal situation to have something violently click in your mouth and the food to fall out. Sadly yes, this does come from experience. Who doesn't love half-eaten digestive biscuit in their lap in a busy office?

2) Bags. Now, a lot can be said for deciding to use a small, lightweight, sensible bag. Good for your back, easier to carry, less chance of injury. However it isn't always possible and girls in paticular LOVE their large bags. I'm thinking a lot about suitcases here. I have had some true nightmares with them. Dragging for more than 1 minute causes bad shoulder pain, picking them up causes bad shoulder pain, forcing them shut causes, (yep you guessed it) bad shoulder pain. Relying on the kindness of strangers or your friends to lug your bag down the stairs at a train station becomes a key part of travelling. That or just taking no clothes away with you and hoping for the best.

3) Lifts. The hypermobile community and stairs are not the greatest of friends. Having ankle, knee and hip issues means stairs are a big problem in some cases, particularly massive flights of them. So you opting to use the lift makes sense, and you might when planning ahead think this will be fine. However, where is the lift? Why is a ten minute walk away? Why is it out service? I have to really let the people with buggies go before me don't I? It's surprising how hostile people with 'life entitlement' can get.

4) 'Would you like a photo madam?'  Limping, using crutches, being in a wheelchair, having to receive help. Anyone who has ever used an aid in public without a cast to explain things, or needed to use a wheelchair will probably have dealt with their share of staring strangers. It becomes it increasingly difficult when you're already frustrated to not vent your anger at people who gawk at you. Maybe we should carry around Polaroid cameras for people to have pictures?

5) Show us a trick then? Explaining your condition to someone and taking time to educate them to be asked 'ohh! Can I see a party trick?' is enough to set even the most patient person off. Not taking a frankly aggressive tone when you explain that NO you won't start bending your joints and causing yourself pain and possible dislocations just to show off, can be quite the feat.

This blog now has it;'s own Twitter feed! I wanted to make a profile for it where I can concentrate more on sharing relevant stuff. You can connect with me @ChronicHealth1 for the blog and for further hypermobile musings and lots of talk about food @laurenrellis

5 awkward hypermobile situations- Part 2

A bad week and a half with my joints has to led to even more awkwardness in and around London town:

1) Public transport.
 In rush hour it is not fun, everyone knows that. However when you have hypermobile joints to contend with, it's never fun. The worst part has to be getting on a crowded tube and reaching up to the bar to hold on, only to hear and feel your shoulder go POP. You then have to make the choice between being in bad pain and still holding on, or just going solo and falling into everyone and wobbling all over strangers. It's also nice to see people's confused faces as you stand hunched over, leaning against a door because your ankle has gone and you can't make it over to the seats unaided. If there are any seats that is.

2) Cooking.
 You go into the kitchen feeling alright, ready to make a lovely, fresh, healthy meal, or even something simple like toast.What you need to remember is that there are dangers everywhere. Chopping vegetables for the Sunday roast? Not so easy when your shoulder comes out and your wrists seize up. Even buttering bread can cause some intense pain and as for mixing up ingredients for baking, forget it. Always fun when you are hosting a dinner party and you have to explain to guests that dinner is microwaved soup because your joints are having a night out. Literally.

3) Pet owning.
So you're in the local park, taking your little furry bundle of joy for a stroll when they see a fox, another dog, or just a plastic bag blowing in the wind. This has happened to me countless times. The dog runs, the lead tugs, the shoulder comes out, your knee twists. The next few minutes are a blur of retrieving the dog, trying to walk, trying to keep the dog near you and half crawling/half rolling home, much to the amusement of other dog walkers. I also once really hurt the top of my back lifting a cat. No animal is safe.

4) Bras.
I am not at the point in life where I sometimes can't wear a bra at all, and have to settle for a crop top or something similar. The straps hurt, the back hurts, they leave marks and you feel like you've been lifting weights just from having the damn thing on for four hours. Not really ideal when you have a nice dress to wear and a birthday celebration to attend to.

5) Dates.
First date, nice glass of wine, lovely dinner. All going well until you get up out of your chair or slide off your bar stool and your hip comes out and you practically fall in your suitors lap. You then have to explain this whole illness and all the symptoms and you then spend the evening worrying that they a) think you are mad or b) think you might be exaggerating or making it up. Always good to remember that if someone doesn't get it, and you can't make a date because of your condition and they don't understand, they probably aren't worth it!

I'm working on making this a 5 part series, so if anyone has awkward situations to share give me a shout on Twitter! @laurenrellis 

My hypermobility care mission: an update

This is a short post, but I think it goes quite well as a follow from my first of 2015. A big part of handling illness is education. Teaching yourself and taking advice from doctors helps you to control and look after yourself better. I constantly learn new things, and I did promise myself I would put my condition top of my priorities this year. This has made for a fairly busy January, but a very productive one. It's been busy in other ways too, I haven't just been hanging around hospitals and clinics thank goodness. I have had an anniversary, holiday planning, lots on at work and have tentatively gone back to running. I will write a post on this soon.

I went to see a dermatologist about some bleeding under my skin on my foot, and we came to conclusion it was done at a wedding by some very uncomfortable shoes about a year ago. Typical, the shoe saga strikes again! It's becoming a constant problem for me, but that's for another time. This is apparently now a stain rather than continuous bleeding and she wasn't too concerned by it.She wrote to my GP who then suggested I have some bloods done.

I had my full blood count and an ESR test done for the first time to my knowledge. The ESR test picks up on inflammation in the body and can therefore detect infection. It can also be used to test for autoimmune disorders and connective tissues diseases. My GP predicted this would be higher than average and flag up something, but it was totally normal. The mystery continues. All my bloods were normal actually, and my clinical colleagues assured me I am a very well person on paper. It's a shame this doesn't filter through to my general feelings!

One particularly exciting thing has happened. I did some research into clinics around London that see hypermobility and EDS patients. I emailed a doctor who sadly only specialises in children now, but she works at UCL and pointed me in the direction of a clinic I could potentially self refer to. She was extremely helpful and proved that initiative pays off. I also pushed for a medical genetics referral, which my dermatologist backed me up on and it actually got done. Success! So I was referred to Northwick Park Hospital in London to the genetics team and am now waiting an appointment.

I will report back on what this appointment is like, as a few people on Twitter have mentioned they are keen to be referred too.

That's it for now!
Happy weekend everyone.