The EDS Chronicles: Taking my autonomy back

Hello Blooms,

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As I’m sat with my notebook and pen considering a possible subject to write about, my eyes fall to the bus timetable that’s opened on my laptop – and I cannot help but smile. This may be something which a lot of you out there are mildly concerned at, that I would think of the English bus services and smile; but I am seriously thankful for finally lighting a fire under my own arse, and venture outside of my comfort zone. However, the term comfort zone doesn’t fully apply to my reasoning for being apprehensive to venture outside of it. To wheel into the realm of autonomy so to speak. But I cannot simply be independent, because I live with a disability known as Hypermobile Spectrum Disorder, or HEDS (hypermobile Ehlers Danlos syndrome), along with mild scoliosis, hip dysplasia and PoTS. Thus meaning I require the aid of my carer with personal care tasks, to help me access the inaccessible area in our village, and to prepare food and drink. Basic tasks I cannot complete without support, and there are some things I cannot do – like reach anything from a shelf as my legs function less than adequately.

It’s arguable that I gained any sense of comfort from the need to limit my sense of autonomy and slow my emotional growth due to vulnerability, lack of resources, and a lack of self-confidence. By staying within the restrictions I had built due to physical disorder and weakened mental wellbeing, I felt entrapped within the bounds of unwanted dependence. However, once I was officially diagnosed it really spurred myself and my family to reach out for help and support from the community occupational health team to request for extra pieces of mobility equipment which can make my life easier – as my recovery was going to take many years of continual support; and is going to be a journey filled with unknowns and obstacles just like any other. However one thing I am dead ass certain about is that it’s a necessity that I, as a 19-year-old woman, have a sense of autonomy; otherwise, I’m left feeling like an adult stuck inside a child’s body.

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Therefore on writing this blog post, I am reflecting upon both how far I have come and areas in life I am yet to fully get to grips with, in the hope that someone out there will see this content and be able to relate to it and understand that they are not alone in how they feel; and maybe even feel compelled to begin making small changes to greater their sense of independence. Otherwise, we’re left feeling like half of a person, and that’s fucking annoying especially with a condition that you’re typically aware of everything on your body at any given time and NOT in a good way (we can only wish).

However, I intended to go to university despite my condition worsening; simply with pure hope, I would somehow manage. Although it became increasingly clear in recent months that I am not in the right place to begin my university education as I have an ample opportunity to start receiving the treatment I have needed for so long; which I was inadvertently denied because of my dismissal and ignorance from many medical professionals over the years. For many years I had recognised my academic achievements as more important than my physical wellbeing because for a significant portion of my life I relied upon academic validation to feel worthy and I used studying as a control mechanism to gain a sense of independence in a time that my life was consumed with a mental disorder; and I was in a damned state. Although something I didn’t realise at the time, was that my coping mechanism (like every coping mechanism) feeds into disorder. So even though I was no longer in college, I still felt the need to study because it was habitual, but thanks to my therapist I was able to undergo effective CBT and the compulsion to revise was no longer a driving factor. So by combining this with my realisation that my physical health could be supported due to my recent diagnosis, I knew that I would deeply regret turning down the opportunity to defer my place and focus on me.

 

How did this affect me though? Honestly, I freed myself of something which was becoming a concern and whilst allowing even more time to get myself back on my feet (literally). With this newfound drive, I began to feel that gaining as much independence as possible was going to be achievable, and by doing so I could improve my present AND my future. I mean I had absolutely no clue where to start and life, being the Lil bitch that it is, continued to pull the rug out from under me – so there was quite a delay between my decision and actually making conscious steps to achieve my goal. But everything all became a tad overwhelming and one night, after I had laid in my bed and wept – a calmness and rationale came over me and I finally felt compelled to get my finger out and begin making a start, and with this, I made a list consisting of the elements of my independence I wanted to gain.

 

Out and about

Travelling was always something I had reservations about for the longest time, as I had been plagued with anxiety up until the beginning of this year, really. However the type of anxieties I had once I began experiencing very debilitating symptoms centred around my disability, and how difficult I found travelling with assistance from someone else nevermind by my damned self! Slowly but surely I felt like I was able to recognise how organising my own time was independent when we make it a conscious goal. I grew to see how to gain a sense of independence from many tasks; whilst trying not to focus on it too much (then going and writing a flippin’ blog post dedicated to it. Genius(!)). Learning when to relinquish control, and sustain it. I started to build my confidence, with trips out starting off simplistically – in a place I was familiar with, so once I started gaining the confidence doing this, I felt able to tackle the beaut that is public transportation; as it used to strike the fear of God into me and I’m atheist! Although once I was comfortable doing it with someone else, I knew what to do and how to access the support for wheelchair users – I was grounded and prepared. Turns out my fears weren’t rational (SHOCKER!).

  •  Recently I have tried travelling on trains, which can be pretty stressful for the average person, with cancellations, delays, the trains themselves, getting to the right platform in an unfamiliar station etc etc. Yet once I had travelled with a companion on a direct train to another city, I realised that once I had my anxiety under control I could definitely give this a wack on my own. Again, once I knew how to access the right support, I planned when to travel, where to, what I was gonna do when I got there and how I would ensure plenty of time for myself. Now I feel like by taking this step, I am gaining a much greater sense of independence
    • But as I’m unable to go on trips longer than a few days at the moment, I cannot be without the care I require at home (which I also rely upon at my residence but it’s not the same is it?). So what I want to learn, and encourage you guys to do the same, is to practice daily affirmations to promote your self-worth, and remind yourself of what you’ve achieved in your journey towards independence.

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Food

Like many with EDS/HSD, I have a combination of conditions – in my case PoTS (a condition which greatly limits your heart’s ability to properly adjust your heart rate and blood pressure with movement causing dizziness, fainting and nausea), CFS (chronic fatigue causing constant fatigue and lethargy similar to the flu) and pelvic instability (caused by scoliosis and hip dysplasia). This combination of factors really affects being able to do basic things like to prepare food or carry out certain elements of personal care [see below]. So really I haven’t come far in actually practising what I intend to once my PoTS (and joints) are better supported. Although the positive from that is that I know in theory what I will do once suitable treatment is attained. With a combination of things such as food prep, my height-adjustable stool, rollator, and the inevitable necessary support from my wonderful carer, I will be getting my own meals in due course!

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Personal care

This is a tricky one peeps as I haven’t got much of any help to say here but I do know what I would like to do in theory. Sadly I live in a small home, albeit a home I still love and cherish, which is older and thus unable to be adapted inside to the degree I require it. So, it’s improbable that in my current state of health I will be able to do anything physical to gain independence.

BUT I think that the important thing to stress here is that with a disability there’ll be things you need help from no matter what you can afford to buy to help you; this is something important to come to terms with by learning to focus on what you can do and try shifting the focus away from what you can’t.

 

Thankfully at the moment, I am spreading my crooked wings and at least moving forward (flight is a bit of a stretch). It’s something that those in my position will all embark upon and it’s safe to say that whenever we lose the ability to carry out basic tasks it hits us where it hurts. As human beings innately strive for independence, but that doesn’t mean we can tweak our perception of what it means to be independent and that our sense of independence cannot be achieved in ways differing from the norm. This blog post pays testament to that belief, and it’s something I hope to blog about future as my journey with HSD/EDS develops as treatment ensues.

If you want to keep up-to-date regarding my recovery journey, follow me on Instagram 

With this, I shall sign off, and with doing so send my love and positive energy to every single one of you lovely people out there. Thank you for taking the time out of your schedule to read this blog post, it means the world, and with that why not give it a share?

Lots of love,

Lori x

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4 thoughts on “The EDS Chronicles: Taking my autonomy back

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