Tuesday, 21 July 2015

Are You Sure You Weren't Drunk?

Yesterday I went into work with my ankle in a support and generally looking a bit sorry for myself. I was, and still am, in a lot of pain. In the morning every joint bar my left shoulder and elbow hurt. Now everything hurts. It was that kind of day.

Needless to say though, my colleagues were intrigued. This was the first time at this job that I've come into work in such an obvious state - not bad considering I've been there 2 months and was in a pretty bad way last week. They kept asking what had I done to my ankle - "nothing" I said, as I genuinely haven't done anything to it beyond exist. I explained "it's just my body hating me, it's normal".

This explanation wasn't good enough for some people though. Being the youngest member of my team by quite a bit, it prompted the inevitable question from the elders; "were you drunk?"

"No, I wasn't drunk," I was having to explain - to be honest if I was drunk and had injured myself I would just be honest. Yet again I had to explain the effects of this disease and what it does to my body. Yet again I had to feel like I had to justify my responses.

It's nothing against my work colleagues - they don't understand. Not many people do unless they know some one who has EDS. But it is difficult to feel like you constantly have to explain that you have no idea what you did to be in this much pain, you just are. And I don't know about other zebra's, but I'd be so honest if it was a drunken incident or such like, simply because I'd be chuffed to actually know what had been the cause of the pain on this occasion.

Anyway, fingers crossed my early(ish) night has sorted me out and today might not be so bad. I'm going prepared - ankle support on, medication at the ready. I'm just hoping it might be a little easier today.

Monday, 20 July 2015


I can't remember if I said anything, but I was back in physiotherapy this year, trying to work on my hips and manage my pain levels better as they had been getting worse.

Anyway, I was doing that, and the physiotherapist felt that whilst I was getting stronger, it still wasn't helping with a lot of issues I was getting that even I shouldn't have been getting with my health issues. We're talking pins and needles in the groin, randomly numb feet, loss of sensation in my limbs, etc. So, we had a talk and decided I'd finish with physiotherapy, but get referred to hydrotherapy to see if that helped some more, and from there I could go back to physiotherapy, and maybe get referred to a specialist again if required.

That was back in March we had this conversation. In the middle of June, just as I was heading on holiday for 2 weeks, I got a phone call from the hospital to book me in. I missed the call and couldn't call them back until my return from sun, sea and sand. We're talking this sort of sun, sea and sand:

Stunning right? Although I digress...

So I called the hydrotherapy team back when I returned from holiday and booked my first appointment and arranged the time off from work. Unfortunately the morning of my appointment they called me to cancel as the chlorine levels weren't right. We're trying again this Wednesday. I can't lie, I'm really looking forward to it, and I'm desperately hoping it's going to help push me in the right direction, or if there is something more wrong with me than we thought, that they'll be able to figure it out quicker than they've taken to get to previous diagnoses.

Watch this space I guess.

Sunday, 19 July 2015

Today has not been a good day.

This week has been pretty average, but the last 24 hours haven't been great. My ankle went a few days ago - again - so went straight in support. It made driving difficult and just general walking a lot more tiring as I was dealing even more constant pain. I soldiered on though, as that's just what you have to do when you have Ehlers Danlos Syndrome.

Last night though I went out for a meal with some friends; we ate, we drank. It was lovely. There was a ridiculous amount of laughter (as there always is with this particular group of friends), but whilst laughter is all well and good - it does hurt my ribs and my jaw an awful lot when done in excessive levels.

Needless to say by the time I got home and to bed, I was feeling pretty sorry for myself, so I took a couple of my amitriptyline tablets that I use before bed time on bad pain days. Normally with this, I wake up a bit groggy and a bit tired. Today however had to be different.

I had booked to get my nails done today, as I knew I'd be feeling a bit sorry for myself by now with my ankle in the state that it is, so after eventually waking up (apparently I can sleep for 10+ hours no problems what-so-ever on these tablets), and dragging myself through the shower, I got dressed and headed off to town for my nail appointment.

All well and good, but about 5 minutes into my appointment, I start to feel funny. I can feel my head spinning, the walls appear to be shaking, I'm overheating... I realised I'm on the edge of passing out. At this moment I'm convinced that I can hold it together - a few deep breaths and I'll be fine. But I'm not fine. I don't want to make a fuss. But then I realise I don't have a choice. I have to stop the beautician part way through, ask for a glass of water and to borrow one of their massage tables so I can lie down.

I'm completely on my own and have never been so embarrassed. At least when I am with my mum or a friend, they can take care of me and distract me from how humiliating it is, but there was no one there this. I just wanted the ground to swallow me up, because of course after this, everyone is fussing over me, making sure I am okay, that I don't need to go home, etc. I managed to finish getting my nails done, gave a generous tip because I was so embarrassed (and I don't tend to tip as it's not necessary in the UK) and I ran back to my car and got home as fast as I could.

I still don't feel quite right, and I'm sure it's something to do with the amitriptyline as I don't often get like this, it's just infuriating as I never have any problems on these tablets. But I do seem to be finding this more and more lately, my body seems to go onto little rampages against itself.

I'm not really sure what is causing it, but hopefully it'll sort itself soon.

For the time being though, I'll stick to water and plain basic food, and hope I feel better soon.