This is a story I almost didn’t tell because frankly at first glance it is embarrassing! However it is a genuine example of how the easiest of tasks becomes a comical farce when you introduce EDS (and surgery). I figure as soon as I can laugh at a situation I can talk about it, after all this is a blog about living with EDS and there are certain challenges to it! So this post will mark the creation of a series of posts along the theme of lessons in humility (or humiliation!).
Due to the nature of EDS it is actually pretty hard to embarrass someone with the condition; one of the reasons is the strip and poke which becomes pretty much a weekly event. One thing you can be certain of is that most weeks a doctor/nurse/physio/surgeon etc etc will ask you to strip down to your underwear so they can poke, prod and explore the extreme limits of your body. Incidentally there is a point in your relationship with your doctor/surgeon/physio when you realise you have an appointment and don’t shave your legs, it’s just like any other long term relationship in that sense and it’s fairly safe to say that by this point you have built a substantial level of trust.
There are also some friendly conditions that go along side EDS that present their own challenges and little humiliations. For instance POTS causes a major drop in blood pressure with an increased heart rate when you stand up frequently leaving you leaning against a wall/shop counter or falling back onto a bed or seat (or the floor) waiting for the room to stop being black and spinny. But the most significant in terms of embarrassment are the IBS’s. Most people only realise that IBS affects the bowel (and can be excruciating, debilitating and humiliating) but there is another form of IBS which affects your bladder in the exact same way. Now the thing with IBS (either variety) is that you can go from fine to critical in seconds, not a good thing when you are mobility impaired!
So this brings me to this morning’s lesson in humility... having worked very hard yesterday I was able to proudly announce that I had got up, dressed and downstairs on my own, got back upstairs with minimal help (the second crutch got passed up about halfway up the stairs instead of employing the irritating and painful crutch/stair technique), got changed and back into bed alone and even managed an almost lying down position after discovering and dressing the blisters (which could easily turn into sores) and re-bandaging and splinting my leg alone. In fact my leg is making good progress, the swelling is rapidly going down, allowing me to tighten the brace and also causing this morning’s problem!
The thing about swelling is that it is fluid that your body places around an injury to reduce movement and protect the injury from further damage. So as it starts to go down you end up with vast quantities of liquid finding its way to your bladder... Now up until the surgery date this would have been less of a problem as I had an anti-spasmodic that specifically targeted the bladder stopping it from having a panic attack any time liquid appears. However the drug has the side effect of lowering blood pressure which is a bad thing when your blood pressure tends to hover around 89/56 (the hospital don’t allow a patient to sit up unless their top number exceeds 90)so a few days before surgery I was told I had to stop taking it...
This all brings me to a 6am blog post about humility (can you see where we’re going yet?). So here I am with an ankle to hip brace, yes hip is in bold because if it reaches my hip on the outside what does that mean for the inside of my leg? At 5:30, with a distinctly lose splint I dragged myself out of bed and across the room to the porta potty (which is currently living in my room as the bathroom is downstairs). Now the camping toilet has been a lifesaver (it is roughly the same age as me, a relic from camping trips past and the kind of thing my amazing parents having lying around on the grounds that its best to be prepared-a motto that had got me and several friends through some rather interesting moments)
Anyway, dragging my leg out of bed and the few steps to the porta potty it was all going well until I forgot to fold the brace down... So there I was at the age of 27 desperately trying to hold the foam brace away from me while holding my leg up with the other hand and balancing precariously on a porta potty! The bright side of it being 5:30am is that the only person to laugh at me was myself! On this occasion the only casualty was my pants (which were caught half inside the foam and in a generally bad position) so with all the grace of a humiliated 7year old I slunk round the bed to the other side of the room to change my underwear before struggling back into bed and tightening the brace up. Much to my dismay the process of tightening was interrupted by a case of the giggles for the latest instalment of lessons in humility!
Due to the nature of EDS it is actually pretty hard to embarrass someone with the condition; one of the reasons is the strip and poke which becomes pretty much a weekly event. One thing you can be certain of is that most weeks a doctor/nurse/physio/surgeon etc etc will ask you to strip down to your underwear so they can poke, prod and explore the extreme limits of your body. Incidentally there is a point in your relationship with your doctor/surgeon/physio when you realise you have an appointment and don’t shave your legs, it’s just like any other long term relationship in that sense and it’s fairly safe to say that by this point you have built a substantial level of trust.
There are also some friendly conditions that go along side EDS that present their own challenges and little humiliations. For instance POTS causes a major drop in blood pressure with an increased heart rate when you stand up frequently leaving you leaning against a wall/shop counter or falling back onto a bed or seat (or the floor) waiting for the room to stop being black and spinny. But the most significant in terms of embarrassment are the IBS’s. Most people only realise that IBS affects the bowel (and can be excruciating, debilitating and humiliating) but there is another form of IBS which affects your bladder in the exact same way. Now the thing with IBS (either variety) is that you can go from fine to critical in seconds, not a good thing when you are mobility impaired!
So this brings me to this morning’s lesson in humility... having worked very hard yesterday I was able to proudly announce that I had got up, dressed and downstairs on my own, got back upstairs with minimal help (the second crutch got passed up about halfway up the stairs instead of employing the irritating and painful crutch/stair technique), got changed and back into bed alone and even managed an almost lying down position after discovering and dressing the blisters (which could easily turn into sores) and re-bandaging and splinting my leg alone. In fact my leg is making good progress, the swelling is rapidly going down, allowing me to tighten the brace and also causing this morning’s problem!
The thing about swelling is that it is fluid that your body places around an injury to reduce movement and protect the injury from further damage. So as it starts to go down you end up with vast quantities of liquid finding its way to your bladder... Now up until the surgery date this would have been less of a problem as I had an anti-spasmodic that specifically targeted the bladder stopping it from having a panic attack any time liquid appears. However the drug has the side effect of lowering blood pressure which is a bad thing when your blood pressure tends to hover around 89/56 (the hospital don’t allow a patient to sit up unless their top number exceeds 90)so a few days before surgery I was told I had to stop taking it...
This all brings me to a 6am blog post about humility (can you see where we’re going yet?). So here I am with an ankle to hip brace, yes hip is in bold because if it reaches my hip on the outside what does that mean for the inside of my leg? At 5:30, with a distinctly lose splint I dragged myself out of bed and across the room to the porta potty (which is currently living in my room as the bathroom is downstairs). Now the camping toilet has been a lifesaver (it is roughly the same age as me, a relic from camping trips past and the kind of thing my amazing parents having lying around on the grounds that its best to be prepared-a motto that had got me and several friends through some rather interesting moments)
Anyway, dragging my leg out of bed and the few steps to the porta potty it was all going well until I forgot to fold the brace down... So there I was at the age of 27 desperately trying to hold the foam brace away from me while holding my leg up with the other hand and balancing precariously on a porta potty! The bright side of it being 5:30am is that the only person to laugh at me was myself! On this occasion the only casualty was my pants (which were caught half inside the foam and in a generally bad position) so with all the grace of a humiliated 7year old I slunk round the bed to the other side of the room to change my underwear before struggling back into bed and tightening the brace up. Much to my dismay the process of tightening was interrupted by a case of the giggles for the latest instalment of lessons in humility!
No comments:
Post a Comment