Some notes on my health

It’s been a while since I did a personal health update, largely because I just don’t like thinking about it any more. I was reminded of this fact when I had an appointment with a social worker yesterday. She is an advocate who I employed to assist me with my NDIS application (though she has nothing to do with NDIS herself, nor does her agency in any way, and therefore has no say in their assessment of me).

It’s a brutal process, being sick. You see authority figure after authority figure and have to prove yourself to every one, again and again and again. Spill your story and retraumatise yourself in the process. You have to prove your life experiences.

The social worker understood the need to describe your worst day to NDIS (and every other agency who will determine whether you are worthy of services), and so do I. But it’s one thing to know this, and another to be questioned about every aspect of your daily life and reminded, that of course you can’t really do X by yourself.

Despite my best efforts, since June of last year, my walking capacity has deteriorated to about 10m, or the length of our front footpath. I have to take sitting breaks in between walking around the house. My showers and getting dressed need to be supervised, at least in some capacity. I cannot go out our back door, as the veranda has too many steps and thus our glorious backyard is inaccessible to me.

Further, my “usable hours” have diminished. If you are unfamiliar with this concept, when you are healthy/abled you generally can do whatever you like within the waking hours of your day (within reason). It’s not like, from 3-9pm you have to be resting in a dark room without stimulus.

When you are chronically ill, you only have a certain number of hours during the day to accomplish what you can. Note that this does not mean you can do whatever a healthy person can – it might be sitting up and eating, answering the door, talking on the phone or talking at all, typing on a computer or rolling over in bed.

My usable hours are about 11-3pm, and closing rapidly. I feel as though I’m losing my days, and what I can accomplish during that time is forever being reduced. I might be able to sew, some days, but usually it just means I can sit upright on the couch and have a cup of tea, maybe have a friend over, go on the computer or for a rare outing if I’m lucky. The rest of the time is taken up with rest* or the laborious process of getting ready for the day or bed.

It might seem from the projects I share that I spend most of my time knitting and sewing, but really sitting up at a sewing machine is a herculean task for me these days. I can get a garment out in short bursts but what I share here is likely what I have completed months ago, then took time to write up and photograph, then carefully portioned out in this space.

I don’t know where I’m going to end up, but having this decline and my obvious lack of capability pointed out to me in such clinical terms is, as you can imagine, not a particularly enjoyable activity. It’s going to be worse when I have to prove it to the NDIS themselves.

 

So, getting back to the NDIS. It’s been about 18 months since my initial application, and I still have no answer to my review (of their initial rejection). This social worker stated she would try to find out either way, and believes a tribunal hearing is the best way forward, which of course would be the worst way forward for my precarious mental health.

I’m so affected by having to do everything myself, and the lack of social support, that I have no choice but to pursue my application. But like most offers of support, I’ll believe it when I see it.

 

Oh, and it’s not like I’ve sat here twiddling my thumbs the whole time (which everyone LOVES to accuse chronically ill folk of). I’ve got a lot to report about various appointments, interventions and bizarre attempts to address my health problems. But this is too long already – I’ll report back another time!

 

*My version of rest, that is. What I consider activity is what you’d likely consider a rest break.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

19 thoughts on “Some notes on my health”

    1. Just a thought: If the NDIS is reading your blog and coming to the conclusion that you are more well (more capable) than you actually are, I think it might be a good idea to absolutely document every minute of your sewing and knitting time. For instance, when you write about a knit or sew pattern, docuument the hours it took you & how you felt during the process. This documentation might help us to appreciate (understand) your disability more as well. I certainly hope the NDIS helps you more in the future.

      Liked by 1 person

      1. It makes sense, but a lot about the NDIS doesn’t make sense, and if you don’t fit in their diagnostic/QOL checkboxes, they aren’t interested. I may be getting an OT assessment but whether they need it or not is another question.

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  1. Thank you for the reminders and glimpses of how life with a chronic illness is. I am sorry to hear how few usable hours you have at the moment. That hides a workd of struggle where getting up to go to the loo is a huge mission. All the best for both a speedy resolution to your struggle with the NDIS, and some remission or improvement in your health.

    Liked by 1 person

  2. Very eloquently expressed: “You have to prove your life experiences.” I’m wishing you energy, ease and mobility. I didn’t realize how challenging it is to respond to a post expressing the omnipresence of chronic illness, and I say this as another person who manages comorbid health concerns and a pain condition. While our experiences are different (and I would never try to compare them), I recognize the courage it takes to live in a non-standard way, managing (to put it nicely) walking up the mountain all the freakin’ time.

    Liked by 1 person

    1. It does take courage to “live in non-standard way”, as you put it. Society is made to be accessible to certain types of people and we with chronic health issues are not one of them. Wishing you the same energy, ease and mobility.

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  3. Damn. It’s no fun. I used to loathe doing the taxes, as I would have do document just how much I spent on therapists and supplements, and that was quíte depressing. They’ve now reformed the tax system, so you no longer get to deduct health expenses. Which is rather lousy, but I don’t mind not focusing on it.
    I really wish you could find what you need to improve your health, but that’s a pipe dream isn’t it? I went on to Wahls Paleo Plus last summer and while it has helped quite a bit, I still have a generous room for improvement. Still, I’m optimistic, and I hope you find something that gives you the same feeling. *hugs*

    Liked by 1 person

    1. It is really challenging to place a microscopic focus on the day-to-day living with chronic illness. I’m glad you have found at least a little improvement. Sometimes we just have to chip away, bit by bit.

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  4. Chronic illness is unrelenting, and having to go through it all for an application like this, to detail it and relive the worst aspects to ‘prove’ your illness, is hard to say the list, a bitter reminder of the struggles and the things you can’t do. I’m so sorry you’re having to go through it all and still, 18 months on, not have an outcome. I really do hope the social worker can get some answers and a way forward soon. Sending lots of hugs, have a restful weekend and I hope you can distract yourself a little from thinking about this part of things for a while xxxx

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  5. I’m so sorry things aren’t going better. This process with the NDIS is maddening. It feels like you’ve been at this far longer than is reasonable, as though the strategy is to just take the most weary people and draw their process out until they just give up. I’ve thought that about disability service in the US, too. I hope this next phase of it gets some results!

    Liked by 1 person

  6. Yikes, that sounds terrible 😦 sorry you have to go through this, and for so long, and so repetitively. It is so generous of you to, despite your limited good hours, expose all of us to diversity and inclusion in sewing/craft spaces, as well as your own sewing projects. Many thanks and here’s hoping your efforts will pay off sooner rather than later with with the NDIS.

    Liked by 1 person

  7. Well my fingers, and toes, are crossed for you! Hoping that things turn out as best as possible. Here and there I see people being approved, so I know it does happen.

    I have a random POTS question for you 🙂 Do your compression stockings ever hurt you legs? I have a new pair and they cause my legs to hurt above the fold of my knee on the back of my leg. They aren’t too tight. So odd. Thinking it’s just the pressure on my skin but thought I’d check in with you.

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