Living with JHS; My Chronic Illness Story

Happy Monday everyone… if there is such a thing?! I hope you all had a good weekend. After a busy bank holiday last weekend, I’ve enjoyed a much needed chilled weekend to rest and recover. Speaking of which, today I’m introducing Simply AJ to it’s new health side. I’ve already written a few mental health posts, but now I’m moving my chronic illness posts across to Simply AJ. I’ve been toying with the idea of merging Living with JHS with Simply AJ for some time and now’s the time to do it. I believe it’s the best option for both audiences moving forward – in my new YouTube video, I explain this further, so go check it out. So, that being said, today I’m introducing this topic by talking about living with JHS; my chronic illness story.

My JHS, Osgood Schlatters and arthritis are part of me but they do not define me. Introducing Simply AJ to it's new health side, today I'm telling my story.
What is JHS?

JHS stands for Joint Hypermobility Syndrome, which is what it was known as when I was first diagnosed. However, you may know this as Hypermobility Spectrum Disorder or Ehlers Danlos Syndrome hypermobility type. It is a type of hereditary disorder of the connective tissues (HDCT). Hypermobility itself is quite common and is caused by faulty collagen which causes hyperextension of the joints. Its likely you know someone who is hypermobile if you yourself aren’t. However, it’s even more likely that this person doesn’t suffer with JHS… the additional symptoms someone experiences alongside the hyperextended joints.

Symptoms…

There are many different symptoms that accompany JHS, which is what makes it so hard to diagnose. Symptoms which are very similar to the likes of ME, CFS and Fibromyalgia… conditions which you’re more likely to have heard of. It makes it even harder when each person may suffer different symptoms. While one person may suffer all of the associated symptoms, another may only experience one or two.

My JHS, Osgood Schlatters and arthritis are part of me but they do not define me. Introducing Simply AJ to it's new health side, today I'm telling my story.

If you want to know any more information, go ahead and check out some of my posts on Living with JHS.

My Story…

For the most part, I had a pretty normal childhood… school, sports, friends, you name it. Besides a blocked tear duct before I was one and speech problems at age five, my health was something I rely on. I was barely ever ill, making it very easy to spot on the rare occasion I was. Until one day… my health was something that would never be on my side again. Having been hypermobile since birth (thanks mam!), it wasn’t something I ever expected would affect me the way it has.

In 2008, age 12, I was back and forth to the doctors. First there was neck pain then there was the knee pain. After some examinations, and what felt like several interrogations, it was listed as growing pains and normal wear & tear for someone of my age. In June of 2009, I had a trampolining accident. I came out of a move wrong and jolted my back quite badly. When it didn’t get any better after several weeks, I went to the doctors about it. An abnormal x-ray and MRI result later, I was told that I’d manage to compress two of my spine discs leaving little to mo fluid between them. From there, the doctors visits continued; the joint pain continued; and the constant brushing off continued.

Then 2011 happened. I finally got a doctor who looked into my history, the number of visits and the fact that I was clearly having more issues than my diagnosis’ explained. Finally, someone believed me when I told them I was getting progressively worse. The x-rays, MRIs and hospital visits ensued. My knee pain was given a diagnosis of something called Osgood Schlatter disease. I promise I’m not swearing at you in another language. It is a condition common in young people who play a lot of sport, causing pain and swelling just below the knee. Great! I finally had the information I needed… or so I thought.

During term time, I would come in from school and fall asleep for hours. In the school holidays, I would spend most of the day sleeping. I would wake up, eat and fall back asleep again. Sleep that would not disrupt my night’s sleep. I would have days where I would wake up and struggle to get out of bed. On days where I was able to get up, I would be walking like a hunched over old lady. There were days where the pain would be so excruciating it would leave me in tears. This would happen for weeks at a time, leaving me missing a lot of school.

Then, on the morning of November 14th 2011 I woke up, walked downstairs and fainted before I was even able to get through the kitchen door. It was that bad that my parents weren’t going to let me go to school… until I reminded them it was my maths GCSE and there was no chance I would miss it. I was NOT resitting in January, unless I had to. After they realised I wasn’t going to back down (there’s that Taurus streak again), they relented. But not without my agreeing to drop me right at the front door of my exam hall (having already rang ahead to the school), booking me an emergency doctors appointment and picking me back up as soon as the exam was over.

However, from there, the ball was finally rolling. Doctors, GPs, consultants; appointments, x-rays, MRIs; blood tests, physios and theories; I had it all. No-one knew. They exhausted every possible avenue. Until my referral to a specialist physio. She took one look at me and FINALLY there was an answer. One that the consultant agreed with. The relief washed over me. It might have been a chronic, progressive condition. It may have been one which would lead me to be in a wheelchair two years on, or so I was told. But, it was an answer to my problems.

Life with JHS…

Things got worse before they got better. Having JHS mostly involves pain management as treatment, because there is no cure. It means a lot of self control; a lot of holding yourself back; a lot of trying not to overdo it. Overdoing it means more pain, more days spent in bed and, usually, a whole lot of sleeping. Sleeping? It might sound like bliss, but it’s not. Imagine sleeping for hours on end and still waking up tired. It’s a whole new way of life to get used to, having to know your own boundaries, especially at such a young age. A time in your life where you should be out discovering the world; out enjoying life with your friends; and a time where there should be little to no worries (besides exams, of course). Instead, my reality was quite the opposite.

As much as it was hard in the beginning, I eventually learned my limits, as did my friends. The understanding they had is something that massively helped me come to terms with this reality and made me feel like I never missed out. Surprisingly, I’m not sorry it happened.

It’s something I’ve said before, but I’m a massive believer that everything happens for a reason. This is just one of those things. I am who I am because of the things I’ve been through, because of my JHS and, honestly, I’m pretty goddamn proud of who that is. My JHS, my Osgood Schlatters, and my arthritis are part of me, but they do NOT define me.

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That’s all for today AJ’ers. Have a great week,

Abbie @ simplyaj.co.uk

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My JHS, Osgood Schlatters and arthritis are part of me but they do not define me. Introducing Simply AJ to it's new health side, today I'm telling my story.
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1 Comment

  1. September 3, 2019 / 7:56 pm

    Thank you so much for opening up and sharing your story with us. It sounds like you’ve had it tough. I’m so sorry you had to go through this. I have to say though, you’re handling it well. You’ve got a great blog going here, and you’re using your experience to bring awareness and help others. That’s always a great thing!

    Sending you lots of love!

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