You’re just double jointed so get over it

Why did I choose this title you might be asking? Well I am not ‘just double jointed’. One thing I need to say, you have no idea of the daily struggles of living with an invisible illness. People often stare at one another, on the train, on the bus, in a queue but no one actually knows if that person is okay just because they’re able-bodied. Welcome to judgemental life.

Will you tell us what is wrong?

Of course, I suffer with Joint Hypermobility Syndrome which is a connective tissue disorder as well as Fibromyalgia. It affects people differently, in my case I am fairly lucky to not have a severe form but I still have to adapt to certain things. For me, being tired is the worst pain of all because I’m not tired, I am physically and mentally exhausted and a nap doesn’t fix the problem. Sleeping for hours and hours helps but then I wake up and within three hours I feel I need to sleep again. It is like a reoccurring nightmare.

1) Career

Oh it is easy to get a job, there are so many jobs out there – I hear this ALL of the time. Yes I know there are jobs out there but I can’t just waltz into a job like a completely healthy person, I need to choose carefully. It might seem daft but even working in retail and hospitality causes me grief. Working on my feet all day is a disaster, the pain is awful and the swollen ankles tops it off. ‘Oh just take some painkillers.’ – No because that is not the answer. The answer is to have a job you believe in, you want to do and one that does not cause you physical damage. The doctors told me I needed to consider changing my career path (when I was 18) as I will cause myself lasting damage. Self-employment has always been advised to me by doctors but it isn’t guaranteed income which is something I need to figure out and plan.

When I was working in hospitality I spent a lot of the time hiding my pain behind a fake smile. Home time was my favourite part of the night, I would get to go home in agony, crawl into bed and cry. It felt fantastic. It also made me feel extremely low about myself because I was incapable of doing my job. I often cried at work, my colleagues would find me washing up or trying to pour a pint whilst crying. Shame and embarrassment was a common feeling for me and I had to quit my job for something more suitable. From then on, I have stuck to office work.

2) Outings

The worse topic for me. Planning an outing is difficult whether it is with friends or my boyfriend, I always have to be considered. When people tell you they would love to go ice skating, roller blading or for a night out, my mood instantly drops. Ice skating is my worst fear because it feels like my ankles are on fire and I feel guilty for having to sit down or hide the fact I want to burst into tears. The guilt that goes through your head at each outings you go to makes you fear the next one. I have ruined many nights out with friends because my ankle has collapsed and I have needed to go to A&E and they’ve had to come with me. Then there’s the ‘Guys I’m really suffering *sniff* I need to sit down or go home.’ – Oh I dread that phrase and I’m sure my friends do as well. SORRY GUYS, I LOVE YOU!!

3) Day to-day

Each day is different for me, sometimes I am suffering and other days I can be as happy as a lamb jumping through a field. Today is a bad day, my back is sore and my ankles are because I have over done it with housework – I know, call the excitement police. Most days I just want to sleep and be left alone because my moods are all over the place. I probably should have a WARNING sign attached to my head when I’m having a bad day. I appreciate it when people ask if I’m okay or if I need time on my own as I don’t need to explain myself nor snap at anyone. Thank you!

4) When winter is coming

Ah, every joint, Arthritic and Raynaud sufferers worst nightmare. The cold really aggravates sore joints and makes you want to hibernate for the entire winter. However, I do love winter, I love the scenery, the fact I can sleep at night and use a hot water bottle if needs be and it is my favourite season. I love the fact I can choose my temperature and keep myself warm.

As much as I would like to, I can’t speak for everyone who has been diagnosed with Hypermobility Syndrome but we are not the same people. I want to raise more awareness about this condition and this is one of the reasons I wrote this post. It is important to show that other things exist and to help educate.

This little keyring is something that I adore because I do not have to explain anything to anyone if I have an accident. It is there, it does not say what it means but at least if I am unconscious people can ‘Google’ if they need to and find out what the condition is. Thank you to Memories Enclosed who made this.

me-etsy

Medical Alert Keyring

So I am not ‘just double jointed’ it is something a bit more serious than doing fancy party tricks and putting on a show. Yes I am able-bodied but you have no right to judge anyone and take a minute to think about others. If you see someone who is screwing up their face or gripping onto anything they can whilst on public transport maybe ask yourself one question ‘Should I see if they would like my seat?’.

One thought on “You’re just double jointed so get over it

  1. Grainne watts says:

    Top notich both my children have EDS-HT my daughter 16 uses a powered wheelchair my son 19 uses smart crutches and a wheelchair when he is having a bad day .so totally understand where your coming from .also the looks from others when they see a young person in a powered wheelchair and the look of amazement when my daughter gets out her chair to stand or stretch .some people are just so ignorant and narrow minded which really does annoy me .
    Good luck with your blog and keep writing 😉

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