Sleep deprived ramblings -Why I use a wheelchair & Life with a variable disability

It’s not often I write about how much disability can suck. I do my very best to stay positive. I write useful posts with coping strategies. I think I do a pretty good job when it comes to living a fun and meaningful life but there are some times when I genuinely feel like my body hates me and right now I hate it too.

Perhaps I should elaborate, I have a number of chronic conditions but I don’t usually consider myself to be ‘ill’. I do consider myself to be disabled (in varying degrees) but ‘ill’ to me, is a temporary state that is usually caused by germs. For the last few weeks I’ve felt ‘ill’ and it sucks. My fatigue, which is usually manageable through careful pacing, has been unmanageable despite pacing. I have had to lower my baselines, rest more than I’d like and take my mum to uni (even then I only managed half a day). All of this has made me feel a little miserable.

On top of this I have spent the last few nights in ‘Owl Mode’. Owl Mode is the term my partner and I assign to my random bouts of sleep-fail, Pain-somnia, awake-all-night-asleep-all-day. ‘Human Mode’ is the reverse, when I get to sleep before midnight and I’m awake before lunch. Since I’m currently blogging at 4am it’s safe to say I’m an owl, not a human at the moment.

(Incase my OT or Physio read this.. I did try relaxation, gentle stretching, reading, getting out of bed, getting back in bed, and all of my pain management methods before giving up and getting my laptop out)

The main reason I’m an owl at the moment is (as I mentioned earlier) my body hates me. I actually went to bed at a perfectly sensible time, after a bubble bath and some relaxation but the longer I laid in bed the less comfortable I became. The dull ache in my back became an intense ache in my back and all the way down my right leg, the muscles in my leg cramped like the ‘growing pains’ I experienced as a child. I developed a headache, possibly because I was in pain and it was 2 am, who knows. Anyway, I went through all of my pain management strategies, then all of my meds, then went downstairs in search of a TENS machine.. I found it but the cable had a loose connection so after 20 minutes of frustrated sobbing, intermittent electric shocks and constant beeping I went in search of a new cable. 3 cables later I was back in bed. Not really feeling very relaxed.

By this point my chances of getting any quality shut-eye were pretty slim so I decided to do something productive and answer one of the questions I get asked most frequently. Why do I use a wheelchair when I can walk. This also gives me a chance to explain a bit more about life with a chronic illness or variable disability.

On the surface ‘why I use a wheelchair’ seems like a fairly simple question to answer but it actually takes a fair bit of explaining.

(I’ve had to ask around for this bit since my own experiences of ‘normal’ are pretty limited)

When tasked with getting out of bed and walking across a room a ‘normal’ person (apparently) just gets up and does it. That’s it, no further thought required. It looks a bit like this.

meta-chart (3)

This, to me, is mind-boggling. Even before I knew there was anything wonky about my DNA and long before I considered myself disabled, this simple task required much more thought.

The following is a rough example of my thought process when getting out of bed and walking across a room.

Awake. where are my arms and legs? can I wiggle my toes? does anything hurt more than normal? are all of my joints where they belong? tense a few muscles to get my blood flowing. take a deep breath. roll over. engage core muscles. sit up without injury. do I feel dizzy. put feet on ground. look at feet to check they are where they should be. tense leg muscles. double-check core muscles. deep breath. push up. once standing pause to check for dizziness. remember to breath. check core muscles. pull shoulders back. double-check leg muscles. look for trip hazards. look for possible things to lean on. breath. time for some walking, shift weight to one leg. check leg holds. step forward. test weight before moving onto other leg. rinse and repeat until destination is reached. check on feet regularly. keep checking for dizziness. remember to breath. remember to engage core muscles. remember posture. look where your going. take a break.

It might look a bit like this.

meta-chart (2)

Not such a simple task after all.

Now sometimes I can do some of these things without conscious though, sometimes if I pay a little less attention I will still reach my destination relatively intact. In my own home I know where the leaning places are and I know how far it is to the kitchen so I can skip a few steps in my thought process. Usually, if I stop paying attention all together, I’ll end up bouncing off door frames and furniture for a while before ending up in a heap on the floor.

So why do I use a wheelchair? to avoid injury? conserve energy? reduce pain? because I’d never get anything done if I didn’t? because when every simple action takes up all of your energy there’s nothing left for actual quality of life?

All of the above.

This also (hopefully) explains why something as simple as a cold can really make my life difficult. To function as a normal human being I am already pushing my body and mind pretty darn hard. Add in something extra like germs and I am fighting a losing battle with my own body. This sucks and it can make life pretty difficult (short-term) but using a wheelchair helps me keep some of my energy for battling germs, it also shows people that I probably suck at walking.

People with invisible disabilities probably feel pretty similar to me but they are often expected to survive a cold in the same way as a ‘normal’ person when really they should be given a medal for getting out of bed.

Maybe not a medal, perhaps something more useful like a nap or free paracetamol. Anyway, as always questions and comments are welcome and I hope you all slept better than I did!

JBOT

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12 thoughts on “Sleep deprived ramblings -Why I use a wheelchair & Life with a variable disability

  1. What a great post! I think it’s awesome you are so open and willing to walk through the process of getting up each day. I’m just recovering from a four day flare and now my 83 year old mother is down with the flu. I have to run over to care for her a bit today and I’m just praying I don’t get it too. Sick on top of chronic illness is overwhelmingly miserable!

    1. Oh bless ya. Thanks for your lovely comments and I’m glad your recovering. Fingers crossed you avoid the germs and I hope your Mother recovers quickly!

  2. Another great post Jo! I really needed to read this at the moment. I’m not battling any kind of ‘normal person’ illness, but all my conditions seem to be flared, which of cause make each other worse too. Sleep is becoming a big frustration at them moment as it’s so far removed from my norm & I just don’t feel rested at all on waking. I love your pie chart’s I’d never thought about how much more I need to think about simple tasks compared with a ‘normal’ person. This post has really helped me to understand that although some days I really don’t feel I’m achieving a lot, I actually am just by getting out of bed. Also, very interesting that you & Jen both find standing much more difficult than walking. I find exactly the same & thought it was just me being ‘odd’! Xx

    Tania | When Tania Talks

    1. So happy I could help 🙂 I think you and me are very much alike, we tend to be hard on ourselves during flares and end up dissatisfied with activity levels. As for the standing thing it’s actually really common! I though it was just me until I started meeting other bendie people who all hates queueing for things becasue it meant standing still!
      Really hope your flares easy soon and you can get some decent sleep! x

  3. This encapsulates my whole life exactly. Add one ‘extra’ aspect to life with EDS – an overnight dislocation or a cold & life is so much more exhausting & can become an existence rather than a life.
    Thank you for explaining the some of the problems EDS (& other conditions) present so well. The pie-chart is a strong visual guide I shall adopt and use to explain to others how life is more complicated and tiring for me.
    I’ve been up for an hour and guess what – I’m going back to bed as I’m currently in ‘Owl mode’!

  4. Oh I hear you. I have had a shocking night sleep and actually mainly due to adrenaline running through my system which means I just can’t switch off and I am in pain from it too. And YES, I have done my relaxation/meditation etc etc before getting up and working at 12-2am.

    And now I am up at an early time to try to get to sleep at a sensible one tonight. Of course that sounds reasonable so I am sure that it won’t work out that way.

    Love your pie chart. One thing for me at the moment is figuring out what is the best thing for me to do – what will take the least energy/be the best thing. I’ve tried to simplify this right now – am I just walking – e.g. walking the dog for friendship and exercise – yes, walk. Am I out of the car/house for more than 15 minutes? Take the wheelchair…..

    Yes I can still walk, but it takes a lot of focus and concentration right now which means I can’t really do much else. Oh and causes me pain and fatigue. Oh and if you want me to stand at all, well forget it!

    1. Seems like everyone had a bad nights sleep! I’m also trying the ‘get up now so I sleep tonight approach’ since it usually works so well .. NOT. I know what you mean about standing! If I’m walking I can keep going but once I stand still my energy drains away and is replaces with pain!

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