Traveling with a wheelchair Plans A and B:

We’re off to the USA this evening. It’s a work event in Orlando but the flight goes through New York so we’re spending 2 nights there for our honeymoon (30 years late).

We enjoy these trips and the conferences are amazing but they mean that I have to take my wheelchair because of all the standing around and long distances between events and meals and so on.

But every time we’ve flown with my own, the poor wheelchair has been badly damaged. So plan A was to send it wrapped in our old sleeping bags:

Then I made some signs so that it’s very clear it’s fragile:

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But it grew from there, adding carpet underlay from when we renovated:

And some old blue table clothes (which needed candle wax ironed out of them!). Then clips, handles, …and this is what we are flying out with tonight!…

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Let’s see how it survives the trip!

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All or Nothing 01…

Written a couple of weeks ago….

We are still guilty of erring on the side of independence. We don’t like to bother people and I am able to walk a bit. Within my home, totally independently and short distances with crutch or help. Having #MrS with me constantly for the last 10 days (in Malta) and nothing being far means I’ve thoroughly enjoyed the independence of periods on his arm instead of my beloved crutch.

We still avoid crowds, and I never stand (I sit if I need to) but  it’s been really lovely to walk a different way again. So now we’re in Munich airport & when we checked in we had the same wheelchair discussion we always do. Yes it was booked, yes they’re expecting me etc. But now and then they ask me if I’m able to board on my own (from the door of the plane walk to my seat) and the answer is always yes as long as no one is around to bump me. So she then asked if I can climb the stairs and the answer, again as always, is absolutely not.

Ok, she said, so you’re kind of in between. Sure, we said, after the confidence we had of a few afternoon strolls on his arm without my crutch. We don’t want them bringing in special gear to wheel me down the plane. I’m always happy on a plane with just my crutch and Mr.S with me, and even on my own, I can easily get to my seat using the seat backs if some one has my bags.

So they sat me down to wait for the wheelchair.

About half an hour later, a golf cart rather than a wheelchair came for us. Which we saw no reason to have issue with, and at least we’d be faster we guessed.

It was great at first, but unlike wheelchairs, golf carts can’t go through security. So she dropped us off and said she’d meet us at the other side!

When you go through security they take everything, including crutches. Security was busy, but even when it’s no busy it’s a fast sausage machine of travellers bustling to be first in line, arms going everywhere as people strip off coats, shoes, belts and empty pockets. The conveyor belt moving without stopping for anyone also brings a sense of urgency as owners want to get through fast to meet their belongings on the other side.

It’s also serious business. It’s not a time to faff of complain or move against any flow.

Stripped of my wheelchair, crutch and Mr S (he had to do all the bags by himself which is fine, but while he did that and stripped himself of belts and shoes and wallet and rushed in search of our things before someone else snapped them up, I was left stranded. And without anything visible to show I need assistance, there was nothing to support me, to sit on, lean on, and I was pushed and shoved into line with everyone else.

One of the female security officers noticed and asked if I was ok, and did I need water and commented that I was looking pale, but when I explained I just need assistance, it’s not part of their job. She said “you should have got a wheelchair”, to which I replied that I had.

There is no room or time for conversion and I was hurried on. We were eventually collected again by the golf cart and its driver who then drove us to the internal train station. Wheelchairs often feel like overkill to me, till I’m on a bustling train, a grumpy long queue of humans, or a crowd to navigate and I can tuck in my elbows, fingers, and toes, and curl up for protection and hang on till we get there.

But unlike wheelchairs, golf carts can’t go in lifts or on trains, so we were sent on our ay on foot, spewed out into the busy crowds where we made our way gingerly to another terminal squashed in a throng of people.

The whole thing took over an hour, and by the time we reached our gate I was spent and very very sore.

Airports are hard on me but with wheelchair access it’s a very viable if exhausting experience. We don’t know what airports or staff or policies are going to be at each step of the way. And airports that we use monthly or more can change at the drop of a hat, or staff can be more or less thoughtful that others.

But for the umpteenth time, it’s all in or all out. No one understands the in between. I need to accept the wheelchair and sit in it til the very end!

.. so we need to suck it up and be all in. Or I’m left all out and it can be a disaster like today!

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Your Questions 102: Rest part A

Here’s the next question I get a lot of:

Q: Why do you say you need so much rest, yet now & then I see out and about, travelling, doing stuff?

This (or a version of this) is another of the biggest questions I get asked most. It’s a difficult one to explain or to understand, but here’s the answer:

I’m going to start by talking about energy. You may have even heard me refer to energy as “spoons”. Here is the original Spoon Theory, a very clever analogy which has taken the chronic illness community by storm and provided a language to help explain what those with low energy experience. I’d highly recommend reading it if you really want to understand it. But at risk of doing a shocking job of reducing it to a nutshell, when she was sharing experiences with her friend, she was sitting in a cafe and grabbed all the spoons around her to explain. Imagine each day we all wake up with a finite amount of energy. Through the day, we use it up, and then we sleep, rest and wake up with a new supply.

Imagine each day we all wake up with a finite amount of energy. Through the day, we use it up, and then we sleep, rest and wake up with a new supply.

Yes, we are all different, our bodies use more and less than the next person, we each have a unique metabolism and so on, but in essence, let’s say the average person wakes up with about 100 spoons a day and spends most of them by the time they fall into bed that night.

Then we can relatively easily allocate a spoon for a shower, a spoon for breakfast, and so the day goes on. Most people have ample spoons to spend for these vital day-to-day tasks. But what if you use up way more spoons on basic tasks than the next person? Or what if you wake up each morning with only 70, or 60, or even only 10. If you had only 10 spoons to spend, and a shower takes 1, eating breakfast takes another, how would you choose to spend them? Keeping in mind that the vast majority of spoons we don’t even register we use and also remember that when people wake up with limited spoons, the same happens tomorrow, the next day and the day after.

Two things happen to people with chronic illness and spoons. They either wake up with only a few to start with, or their illness uses up a whole chunk of them without permission. (or both!)

Using Up Too Many Spoons:

One way to lose a lot of spoons is when our bodies are fighting for us. When we are unwell, our (healthy, “normal”) bodies send out the army to beat whatever is ailing us. If not, we will die. Our army is our immune system and while most people assume they don’t see it, we do! Each time you get a cold, the cold itself has few systems, but fevers, shakes and aches are all not from the cold at all, but from our immune systems fighting. And if you don’t believe me how many spoons it takes to fight a cold, think of how exhausting it is to have the flu! Those are your bodies fighting hard, and they leave few spoons left to do anything during the day. Our Immune systems use a LOT of spoons. If you have the flu, you lose 70 – 90 spoons, which leaves precious little to do anything else, even eating or reading a book, never mind having a shower … and we all know what that feels like right?

So imagine if your body is constantly fighting a virus it can never win, a disease that constantly fights back. For anyone with a chronic disease, their body fighting to keep them alive uses up a chunk of those spoons.

Another way to lose spoons is to lose them to pain. Pain is absolutely mind-numbingly exhausting. How? When we are in pain we tense up our bodies to try and protect ourselves, we wriggle, we move, we rub, we toss and turn and we burn up a huge number of spoons every day. Obviously, low-level pain uses way fewer spoons than high-level pain, but long-term pain uses way more than short-term pain. It makes sense pretty quickly that any kind of long-term pain steals valuable spoons.

Waking Up with Not Enough Spoons:

For many chronically ill people, never mind how many spoons get used up on other things, many of them wake up with only a few to begin with. ME/CFS is one such condition, and without going into exact specifics, those who have been handed this particular burden to bear simply wake up each and every morning in the same condition as someone else who’s just had a full on day …before they’ve even started. So to wake up totally spent, feeling like you’ve been hit by a train, and with only 10, or 20 or at best 30 spoons to spend, for the entire day, it is horrific. But it becomes their new normal.

So what does all this have to do with me?

First of all, if you remember from my last question/answer post, I shared that because my tendons and ligaments are so loose my body uses up a LOT more energy than most people to keep it stable, I lose a bunch of spoons each day simply to that. It’s not quite like burning energy faster, but more that it goes to other things… let’s say I lose 10 spoons a day from this alone.

Secondly, I am in a huge amount of pain, all the time. It’s very easy to forget that I am never free of pain and that even painkillers don’t do anything. So my pain alone steals a lot of my spoons. I’ll give it another 10.

Thirdly, no one is quite sure why (though there are some theories, I’ll explain them another day), but there is a much higher proportion of ME/CFS sufferers in the EDS community than there is in the general population. So I also have a secondary diagnosis of mild ME/CFS which means each morning I wake up with about 3/4 of a “normal” dose of spoons. That means I start with only about 75 spoons each day instead of 100.

Starting at 75 and losing 10 to pain and 10 to floppiness, before I’ve done a thing means I only get about 55 spoons a day for your 100. It’s a blessing compared to those who wake up with half of that or less, but we all use up a whole chunk of spoons on the basics of life and on a good day it leaves me with little for outdoor life, and on a bad pain day it leaves me with nothing at all.

So I do a number of things:

  1. Two days a week I only spend about 20 spoons (regardless of how many I wake up with). I don’t leave my bed other than for the basics. This doubles by giving my joints a rest too, which in turn gives my body a rest from the pain, which in turn means my pain steals less of my spoons on an ongoing basis. It is still very painful to do nothing, but I am not putting pressure on my joints like “doing life” does.
  2. The rest of my days are only half days. I don’t get up before 8am and I’m usually in bed by 3pm. I never extend that on more than 2 days a week, so I often get to spend up to 2 evenings out (though not late).
  3. I then usually have enough spoons left to spend 2 short days a week trying to do “normal” things which is vital for not just my body but for my soul too! Because I have such a limited world these days, you only see the pictures of the smiling face, you don’t see that I left early or went to bed straight afterwards. You see the travel pics but you probably don’t stop to think (not that you should) that most of the pics are from my bed, the plane, the hotel or the transport. Tomorrow we go home from 2 weeks away in Cape Town. I’ve spent 90% of that time in bed. I’ve had 2 short evenings out in the last week and apart from breakfast each day in the restaurant which is less than 100 feet away, every lunch and every other dinner has been in bed. Then why go? The change of scenery from my own bedroom is a huge part of my sanity. It is WAY better for my heart and soul to go along on the trips than it is to stay at home with no help (and I get to eat in bed without having to cook it myself!)

So remember (and I know it’s hard to), if you see me out and about, it is likely one of only 2 outings a week and I’m probably crashed out in bed by the time you get home. And if you see pics of me here and there, remember, that it’s likely from the car, the plane or the hotel room. I do my art from my bed mostly, and the rest of the time it’s a very precious and much needed outing with people who come to support me.

Thanks for all your questions! It’s great, and I hope this has answered some more of them. If not, just ask!

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Your Questions 101: My Crutches part A

I’ve decided to start a series (even though I’m behind in others, sorry about that, but I’ll catch up eventually) on the most questions people ask me. This way, as more and more people ask the same ones, I can send them this way to give them the most comprehensive answers possible… with pictures!! So feel free to take this opportunity to ask as many as you like and I’ll answer them the best I can 🙂

Q: Why do you say you can’t walk without your crutches, yet now & then I see you without them?

This (or a version of this) is one of the questions I get asked most. In fact, often, it isn’t a question, it’s more a You don’t have your crutch!! I’m so glad you’re better!!! And when I try to explain that I’m not, most people don’t listen to the answer, they just tell me I must be better. So here is the answer….

With EDS, every single collagen cell in my body (over 70% of the tissue in all our bodies) is faulty. Each and every one of those cells has a tiny piece missing. It’s genetic, it’s like missing a leg, an arm, or anything else. Therefore there is no cure.

Tendons (the usually strong fibrous “strings” at either end of every single muscle in our bodies, that connect each on one end to the bones and the other end to the muscle) and ligaments (made from the same stuff but are much shorter and wider, less stretchy but much tighter and connect each and every bone to the next bone in every single joint of our bodies) are made out of collagen. Therefore, mine are not as strong as yours.

This means that:

  • My body uses up a LOT more energy than most people to keep it stable.
  • I still wobble a lot, even if I may not look like I do.
  • I fall over and bump into things a lot.
  • And when I do, my body receives an injury that another person would need a much greater trauma to produce.

Here are just a few of the many injuries that you may have known about in a time that you have known me (all pre-diagnosis):

  • I slipped and fell on my right wrist in Fiji. No bones were broken, yet I spent 11 months in a cast, had surgery on both sides of my wrist, wore a brace for 5 years, and still suffer from deep pain. The ligaments and tendons were damaged in a way that is not consistent with a simple fall, and have never healed fully, even though that was 17 years ago.
  • My right hip never recovered from three pregnancies and over time and without knowing what was happening, it is my most severe tendon/ligament injury. It has been excruciatingly painful for 29 years, and I did not realize that I was compensating for it by carrying the vast majority of my weight on my left hip/leg.
  • I tripped on a suitcase I’d left on the floor, on my way to the bathroom just over 3 years ago now. I landed on my left foot which twisted it. I couldn’t weight bear at all for months, and it took 5 months and an amazing specialist to eventually diagnose the Lisfranc Injury. The dislocation is extremely subtle, not unlike the Xray photo below, but it is none-the-less out of alignment because the Lisfranc ligaments have been damaged so badly and cannot repair themselves due to the weakness of my tissues. Lisfranc injuries are rare, with only about a 50% full recovery rate for healthy people. Those which don’t recover, require surgery to fuse the bones together, and even then, many of those patients are left with lifelong pain. Because of the fragility of EDS tissues, this surgery is categorically not an option for me. Therefore, my Lisfranc Injury (Frank as we call him) is permanent and will never heal.

The pain of tendon or ligament damage is excruciating. What makes any damaged tendons or ligaments in the leg/foot even worse is that weight bearing of any kind compounds them. For hips, even lying down, rolling over etc, contribute as well.

Basically, I can’t fully weight bear with either leg (hip on one, Frank on the other). Standing is VERY bad for me, walking less of an issue because I’m moving and not putting weight in any one spot constantly. But I HAVE to walk a little every day to keep my muscles strong and compensating. When Frank happened, and I was in a cast for 3 months, I couldn’t walk at all, the muscles wasted and my knees, feet, everything else, would dislocate just rolling over in bed. Don’t get me wrong, this still happens, but at least when I am strong they happen way less.

Our hands are not designed to take the weight of our bodies, and neither are our shoulders. So when they put me on crutches, the first things that went (and by “went” I mean excruciating pain as the tendons and ligaments stretched and broke) were my hands and wrists. So I cannot use “normal” crutches which are SOOO bad for everyone anyway.

Therefore I walk with a SmartCrutch. Invented, designed, and made here in South Africa about 7 years ago, which are my lifeline. They use my elbows to carry my weight. They provide a handful of lifesaving jobs for me:

  • They transfer my weight meaning that when I walk, Frank, my hip, and the crutch, each carry about a third of the load. That’s enough to make a HUGE difference, and that difference is the gap between being able to walk and not!
  • They keep me stable. I wobble less with them which protects ALL my joints, and I have gone from falling multiple times a week to having not fallen at all with my crutch. So they constantly save me from major injury.
  • They are a visible sign that I’m struggling. We don’t notice how much we jostle in life and bump and knock other people. It’s fine for most people, but for those of us who are a little more fragile, it is those bumps and knocks that hurt me. When I have my crutch people give me a little bit of extra space, possibly without even noticing. When I need to sit, it makes sense to strangers if I have a crutch in my hand. If I don’t have it, people think (and tell me) I’m lazy.

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But can I walk without the crutch? Sure.  But only on absolutely flat ground in the safety of my own home, the homes of my children and friends, … all places where I know, am not at risk of being bumped or pushed, and only for 20 minutes or so, and in fact, these bursts of walking are what keep me strong. They are what keep me moving. They are a necessity. But if I walk for too long, with or without my crutch, then I suffer for it terribly later.

And, walking is not the same as standing. I do stand, in fact, I often stand, and I ALWAYS pay for it later. I am also very bad, and when people tell me to sit, I often brush it off, which I shouldn’t do.

Where is the damage?

THIS is the best article on Lisfranc Injuries that I have been able to find, and it includes an Xray very similar to mine. You can barely tell the difference in the gaps on the left and right foot, but when our bones aren’t aligned correctly they pull hard on all the ligaments and tendons and cause other injuries.

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I’ve no idea of who Julio Jones is but THIS article has a good picture of the same Ligament that is damaged in my foot (though this is a right foot, mine is my left):

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Where does it hurt?

In THIS article on Lisfranc Sprains (another word for a mild Lisfranc Injury, but the position of the pain is the same) has a good diagram of where the pain is and is a good article on some of the issues:

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For the first time since I got my Smart Crutches, I am without them. In the rush to get out the door they were left behind. And suddenly I am extremely vulnerable. A walk 3 blocks up the road to the restaurant last night (leaning heavily on my husband’s arm for support) was not the same and I was in agony by the time we got there. Other outings are now not even an option. I often push myself too hard and too far, and I pay for it, but now I can’t do some of the very basic things I am able to.

Thankfully my crutch is on its way thanks to a number of people, but it has been a MASSIVE reminder to me of how much I rely on it every day for what other people see as very basic needs. It has also sparked a whole lot of questions which is great, and I hope this has answered all of them. If not, just ask!

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Dentist Update:

Life sucks.

I love my dentist, he has really taken on the idea of my health issues, and he always explains what’s going on. Today was the second of about six visits in six weeks and it’s so taxing. Today, I was supposed to have two out of about a dozen new fillings, on the bottom left side. The second tooth from the back wasn’t included in the idea, so it was going to be one new hole and one replacement of an old metal filling.

Screen Shot 2018-02-05 at 20.35.54So we started well, though I always have to remind them that I have to have the special green anaesthetic and not the “normal people” blue and feel like a bother that they have to change it all in the machine. (The green one is the only one that doesn’t contain Epinephrine).

It’s one of those machines that sloooowly delivers the dose through a very fine needle on the end of a long tube. The idea, in theory, is that the pain in the delivery of an anaesthetic is from the liquid going in. So it goes in very slowly, which I am told means there should be no pain. But as much as I try not to, I instinctively flinch when the pain shoots up the side of my face like lightening-bolts past my ear up to my temple.

When that was done he asked me what on earth that flinching was all about, and I sheepishly explained it to him. He started saying “what on earth?…” but as I ran my finger along the line of the pain, he changed tack to “Aha” and explained that about 15% of the population have an extra nerve branch called a Retroauricular Branch that runs up there, and sadly I have one. It is neither a good thing or a bad thing… till you need your teeth numbed at the dentist and right at the place where the needle goes in you have this extra nerve and the needle pokes it! I can’t tell you how much it hurts and because it is a slow process, it isn’t fast either 😦

On to the fillings and he quickly realized that the tooth in the middle of the two he was working on was in trouble, so instead of two fillings I had three, and the middle one was MASSIVE. And it hurt. Which it shouldn’t. But it only hurt (a LOT) when he drilled on the one side. And as it was the biggest job of the day there was an awful lot of drilling.

Afterwards, he told me that on rare occassions some people have an extra nerve running up the outer side of that middle tooth. It’s not part of the same nerve that’s numbed so it isn’t protected. Really? Two extra nerves, neither of them part of the numbed nerves? And an extra filling? And of course my jaw dislocated through the process but we knew that was coming and there’s nothing around that.

So I’m feeling a little sorry for myself today, and while I feel like I’m a little on the raw end of this particular deal in life, I’m thankful that for the first time it makes sense! I have been told all my life that I’m being a baby and it can’t hurt, but suddenly I can explain why. I even got a wee moment of empathy from MrS (or was that him just cringing at the thought of it himself?).

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A Despicable Excuse to Touch!

I didn’t get very much sleep last night, and what I did get was wracked with nightmares. You see, the last thing I did before turning off the light was skim this article on the EDS Society Facebook page. I didn’t do that intentionally, it’s just what happened to pop up on my News Feed as I was closing down.

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In an instant, it brought back one of my own nightmares, and that was the end of any illusion I had that I could get some rest. Nights are difficult for me anyway. Every night is filled with deep, excruciating pain and discomfort so I have to manage my fragile environment in all kinds of minuscule ways; are there no cracks in the curtains? Are the right meds within reach? Do I have the pile of pillows on hand ready to prop joints in the dark when they strain or pop? Are the extra blankets within reach if the temperature drops more than a couple of degrees? is there water by the bed? And I need to decide which level of pain and sleep medications will I take before turning off the light.

Despite taking the strong meds I tossed and turned, flung pillows, and moved them constantly. I overheated and shivered in turn, and did something I never do, I took a second set of medications in the wee hours of the morning, knowing that that could well have consequences to the day ahead. But I desperately needed an escape that didn’t come, from my nightmares, ….and even more desperately I needed sleep.

Over twenty years ago, as an extremely naive and fragile young wife and mother with a family history of skin cancer, we had just moved to a new city and I needed to find a new doctor for a skin test. I’d been having them every second year for about a decade, and while in theory I was supposed to have them annually, I already had so many as yet undiagnosed health issues that finding new doctors filled me with dread and fear. So I was behind schedule already, and I had the extremely rare opportunity of having my mother-in-law in town, so I convinced her to look after the babies while I headed to the local GP for the first time.

I was used to skin tests, and with a variety of doctors and specialist. I was used to stripping to my underwear and lying on the examining table with a sheet to cover the bits he or she wasn’t currently checking. I had never been asked to remove ALL my clothes, as most underwear allows movements to the left, right, up or down, to cover every inch of skin. I’d I’d never been left without any kind of covering.

So I was left a little disorientated and uncomfortable when the young doctor insisted I remove EVERYTHING. There was nothing to hide behind, nothing to protect my dignity in any way shape or form, and I felt extremely uncomfortable and unable to protest without feeling like an idiot. I felt humiliated and vulnerable and exposed. I didn’t know what to do with my hands and I desperately wanted to cover as many bits as possible.

But there was nothing I could do so I gave myself over to him and closed my eyes, trying in vain to disappear to somewhere else in my head. I wasn’t all that good at doing that back then, and it wasn’t working, but I concentrated with all the strength I could muster. So when he suddenly spread my legs and proceeded to do an “internal examination” I got the fright of my life. I didn’t even stop to think, I instantly pulled away and protested, but he was insistent and told me he needs to check for suspicious moles on ALL skin, internal as well as external.

I could barely breathe, the level of violation became extreme and I felt totally powerless. I don’t remember getting dressed, paying for the privilege, and getting myself out of there, but I arrived home a mess.

My mother-in-law (a prominent Psychologist) saw immediately something was wrong, but I first needed to phone my husband and ask him to come home, then phone the local sexual abuse hotline. I spoke immediately to a social worker who assured me that on so many levels what the doctor had done was wrong, even if some internal skin needed checking (though in the two decades since I have never experienced it again). She gave me instructions on going to the police station to make a formal complaint on the day it had happened and talked me through the process.

I then told my mother-in-law what had happened, whereby she proceeded to scold me severely. She told me that bringing this onto my husband would bring him so much unwanted stress and added responsibility. That I needed to spare him the journey ahead and that if it led to court charges and court case, it would be an awful journey for my husband. She made it very clear that she would not be supporting me if I proceeded and that she would not encourage my husband to either.

I decided anyway that I would like to speak to a policewoman and so my husband drove me to the police station. I told her my story and she responded by telling me not to waste police resources, and that they only dealt with “real rape cases”.

I went home feeling more humiliated than ever.

And so it was decided by the authorities and those that I trusted and looked up to, that I would say nothing, do nothing, and that I would spend the rest of my life in silence… until last night!

I was 24 years ago in another city and another country, a lifetime ago… But it has simmered deep in the background of my soul till today. The violation, the humiliation, the control, the betrayal, … My heart breaks for those women in the article and their bravery at standing up to tell their stories for all the world to hear and see brings me to tears of thankfulness! Could I have been that brave 24 years ago? And if I had been, would anyone have listened??

PS: I’m so proud of myself, looking back, after the trauma of the incident as well as the compounded trauma of being forced to squash it, that nonetheless, I phoned and made a complaint to the AMA (Australian Medical Association) which I followed up with a written letter. In a small way, I spoke up.

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Dressing For the Dentist: Part One

The last week I’ve had 2 dental appointments, and for anyone who has to deal with the medical profession on an ongoing basis, there is often much trauma, anticipation, fear, and “Vulnerability Exhaustion” involved. So I decided to garner a little bit more control and security than usual for this first appointment of the new year, and I dressed for the occasion!

img_4272I took the time to prepare well and I’m so glad I did. Dressing up for doctors or specialists was the last thing on my mind, but dressing for my comfort and safety is a different thing altogether. I made the following list the night before so that I didn’t have to plan it all as I was rushing out the door (I was reminded of what a good idea this was as I found myself with only one sock on). It’s easy to underestimate how frazzled we are in the moment.

1: Dressing for personal space & dignity:

(clothes with windows)

I tend to wear “stretchy” when it comes to anything to do with doctors and tests and so on. But believe it or not, stretchy sleeves don’t always pull up high enough for blood tests and BP readings. I’ve therefore sometimes had to remove my whole shirt for these simple procedures which are often done in places where there are a lot of people around. I felt very exposed and embarrassed, which added to my already rising anxiety and lack of safety.

The same applies to the legs. Jeans rarely ride higher than a few inches, whereas stretchy pants can often pull way up past the knee. Stretchy as well as skinny, however, does not. Exposing my underwear and all the bits that try to jump out of them are not helpful to knee specialists and physios, and leave me with a level of discomfort that I don’t need on top of everything else. I’d really rather not take my whole pants off!

Check Points:

  • I check the stretchiness in advance if I’ll be relying on it for windows.
  • Cardigans are the ultimate in clothes with windows, they can be left wide open to cool down, taken off in a flash, and wrapped around for warmth.
  • Socks with footless tights become windows instead of full tights which need to be removed in full (along with whatever is over them!).
  • While buttons provide great windows, they can also be complicated and slow when changing. They also require a bit of thinking as you can do the wrong ones up without noticing! Press studs and zippers or wraparounds are great alternatives.
  • A button-up shirt can mean exposing only a small part of me, but the same shirt, however, under different tests and circumstances can also pop open and reveal bits I’d rather not show. I want to pick my windows!
  • For the same reason, I don’t want shirts that pop open or ride up (or down), therefore, I’m usually a little more generous with the amount of fabric in my clothing than I might otherwise be.

2: Watch the head!

This is probably the worst area for me and the space in which I have struggled the most! Whether it’s in a cubicle before a test, sitting in my GP’s office, or waiting in a long and public hall in a hospital, there is nothing that makes me feel more bedraggled and out of control than a shirt that needed to come off over my head! My glasses have got stuck, flung off, and bent… my hair has become static and flyaway, ponytails have come out, earrings have become hooked, lipstick can smudge, phones fall out of pockets, I have become disorientated and dizzy, and I have even hurt myself bumping into the wall or a chair I didn’t know was there. The list of things that can go wrong is endless, and while they are usually not earth-shattering, they can go a long way to feeling dreadful when you are already feeling very fragile or weepy.

They don’t help us to feel like we are being taken seriously either. It makes a difference to me when I can look a doctor in the eye as I’m talking and removing my clothing at the same time. Try feeling like you are being taken seriously when talking through an upside-down shirt covering your face! It can be thoroughly dishevelling, and difficult to walk out with the same dignity with which I walked in! … I FEEL more vulnerable and exposed when and after removing clothes over my head than anything else.

Check Points:

  • It sounds crazy, but if the best option for me is something that needs to be taken on and off over my head, then a practice run is always the way to go. Making sure I know the shirt, pick something with a neck that stretches far, and knowing that I can whip it on and off easily and quickly is a game changer.
  • Again, if it has to come over the head, then I always avoid necks with buttons and zips.
  • We will discuss jewellery separately, but if going with the over-the-head option then necklaces and earrings become a massive catch point and need to be left at home.

Next up… dressing for the cold, which underwear to choose, clothes and hospital and anxiety, packing your bags and much more!

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