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On Uncertainty

July 21st, 2019 | 2 comments

On Uncertainty

In the back half of 2018, I withdrew.


My focus became internal, my specific stress response (crankiness with a side of ignoring the obvious) was on show, and I was feeling incredibly uncomfortable in my body. Deep down, I knew something was wrong, that my life had to change. Luckily (? maybe) I have had experience with this progression, and I did what needed to be done, and investigated this change in my body.

 

So, what it was this big change? After experiencing increasingly more regular symptoms over the space of a couple of years, late last year I was diagnosed with generalised hypermobility. Combined with having my bleeding disorder this means that my joints are unstable, and when they move beyond a healthy range of movement, it can cause bleeding into soft tissues that’s around my joints. In simple terms, this is meant that many of my major joints as well as the smaller ones in my hands have become unstable, weak and sites of pain and ongoing disability. My whole world has shifted around this development – in order to ensure that I can regain healthy use of these joints I have stop doing a lot of things that I was (and I’m sure many people) take for granted. Cooking, exercise, work, doing up buttons on my pants, holding my book or phone and even scrubbing my hair and scalp in the shower have become tasks that need modifying for them to be healthy for me. Some are things I am no longer able to complete myself. Even this blog post and many of the posts you may have seen on social media have been completed without the use of my hands. I’m very grateful for assistive technology which allows me to dictate my words for you. I’m sharing more about the day to day realities of my situation on Instagram Stories, I hope you’ll join me there.

A white woman, writing in a journal. The focus is of the journal page, mostly filled with handwritten notes. On the left, you can see her torso in a brown jacket.

I haven’t been able to do this for a while, which as a writer, is a real shame

 

Of course with any change in our physical bodies we experience it on other levels too. Along with bleeds, unstable joints and pain, I have also been experiencing increased symptoms of anxiety and depression. My sleep routine has disappeared on its own adventure. Over the past eight months I have acquired a range of new medical professionals, health and medical terms, assistive devices and I’ve had to step into the vulnerable space of asking for help.

I’ve been finding myself learning and relearning lessons that crop up over my life, especially in relation to other experiences with illness and disability. I believe the most significant one has been learning the power of going slow and even stopping. When reality around you keeps going through a change in health circumstances, it has been my experience that many of those external things have to fall away to give health the focus it needs. For me, my health has to come first. Over the past eight months, and for the immediate future, that has meant stopping so many things that used to be just a normal part of my day.

There are absolutely been days or even weeks where I have struggled to come to terms with during this change and how my life is looking right now. It’s incredibly understandable when going through something this significant to question your own self worth, question the value you have for yourself and for the people around you. However, I believe that in truly stepping back and giving myself the space to focus on my health, including the mental health, it is allowing me to still hold on to my value as a being independent from what I am able to physically do. 

Physical therapy tools: 2 hand weights on the left, the 3kg one is standing on its end. In the middle, is a blue therapy band, a collection of Rad Roller trigger point release balls in a block and a green theraband at the bottom. On the right is a Rad Rod with a Helix over the top (the Helix is a foam roller with a groove in the middle to support the spine).

Trigger point release & physical therapy tools I’ve been using.

 

I don’t know what the future holds

I don’t know what my prognosis is. One of the things about rare diseases is that often there’s more we don’t know than what we do know. How my body is going to react to the therapies and treatments that I’m using isn’t something that any doctor or therapist can predict. While I’m hoping that in the not-too-distant future I’ll be able to get back to my exercise routine, my work, to using my hands in all the normal ways that people expect to be able to use them – how that will happen and when that will happen is not something that can be predicted. 

 

Choosing to stop doing things, even basic tasks, is often thought of as failure. Right now, I’m not a productive citizen. I’m not earning any money, I’m having it spent on me. Stepping back from goals or things you’ve previously agreed to do is really framed as a bad thing. As a person with multiple chronic illnesses and lived experience of disability, I’m also very aware of internalised ableism that I have in my mind. This is seen me think of myself, both recently and in years gone by, as having less value when I’m unable to physically do things or be financially responsible for myself. This particular round of illness and disability, however, has really seeing me look more deeply at this pattern. In examining their false equivalence between productivity and value I’ve been relearning how to be myself, to view others, and the very human experience I’ve not been what is expected.

Items on a green & grey checked pillow - a black sleep mask with a small tin of "Night Jasmine" lip balm on top, a bottle of doTerra's Lavender Peace oil sitting below the mask and an additional sleep blend next to it.

Companions to my constant activity – rest & naps

 

Right now, my days consist of many things, even if they’re not things I would choose if I could ‘Infinity Gauntlet’ my reality. I am hard at work managing chronic pain, researching my conditions, attending medical appointments, completing physiotherapy, chasing up referrals and doctors offices, learning to and actually managing my mental health, napping, and working my way through Netflix. If this seems like a long list of things to be doing on a daily basis, then you’d be right. This is not an easy job. It’s also not a well paid job, or a widely respected one. What it’s teaching me is that it requires more focus than my health is affording me, resilience I don’t think you can get in any other job, and increasing compassion for myself and for others. Oh, and that pain & fatigue are a real bitch to manage. 

In the future, I will be changing how I make decisions, yet again. My health requirements have changed once more, and so will my choices & direction. How I work, for example, will shift to include much less hand-intense work (hello dictation, recording and speaking). I’d love to be reading more, just for fun (and professional development, though they intersect when you work for yourself!). I hope to be utilising tools to assist me in blogging more regularly, too, though this will be dependent on my pain & fatigue levels. I also wish to step more into sharing my journey & experiences with women’s health and healing in further posts and emails.

 

What happens further to those things is uncertain. I hope you’ll join me, anyway.

P.S – I’m loving hearing from people at the moment, given my outside-the-house interactions are minimal and medical, so leave a comment, send me an email, drop into my social media DMs. The internet is a great tool for contact when you can’t get out.

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