Walking Slowly…

One comment I’ve heard a lot the last 6 months is:

You’re walking SO much better these days!”

4 years on one crutch, and this year I feel like I was starting to win. Correct me if I’m wrong, but I’m sure people have been noticing a difference? …my gait has straightened, I have more confidence, I know how to use my crutch well, and I’m starting to walk further and further.

And now this! I hate Bertha. She’s difficult and ugly. She’s lurked in the shadows for nearly 3 decades, but she’s never been a serious threat… till now.

I am overwhelmed by the fact that like Frank, she’ll never go away entirely, and they’ll both battle through life with me as long as I’m on this earth. But I’m just as determined to win some level of strength back!

Yesterday I was able to do about 20 minutes at a time. I don’t know what’s worse. How slow I am or how much I have to concentrate! Both are frustrating. If there’s an opposite to ambidextrous it’s me! I can’t use my left hand for anything decent and it took 6 months to learn to use a single crutch because the way to support Frank was counter-intuitive. Four years of timing my crutch and my feet and my hips a certain way and now suddenly it’s different … completely different.

So I have to concentrate and it’s sooooo annoying, and I often pop out of synch and then Bertha screams. Who would have thought it’d be so hard.

What’s hard is I’ve swapped sides, to protect Bertha I can’t weight bear on her at all, but one of the reasons she’s fallen apart is I dislocated my knee in June:

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That’s how easy it happens… It doesn’t need to be a major fall. A silly pull on my leg without any pressure and boom. Then a few weeks of compensating on the right leg to protect said knee and Bertha chucked a wobbly and now I’m stuck.

So… no weight on the right hip and minimal on the left means the bulk of my weight is needing to be carried by my shoulders so I have to be super careful not to damage them either. And the wheelchair is no good because I can’t sit upright plus it gives me no strength at all. So for now, it’s just this little walk up the block each day:

 

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Bertha & The Hip Significance..

The Hip Significance:

This is probably my biggest setback since Frank and my diagnosis 4 years ago, and my long journey back from being unable to walk at all.

I used to think that not being able to walk was the worst thing my body could throw at me, but not being able to sit upright scares me even more. I can’t sit at the dinner table, in a car, or sit and have a coffee with a special friend unless we can find something quite soft and “lounge-y” and keep the time super short.

It doesn’t just hurt like hell, …it’s exhausting and it makes Bertha mad, which in turn means she can’t heal… and likely all of me will get worse.

He’s worried I won’t be able to sit in the Kombi seat and go traveling… but I’m still back at worried I won’t be able to drink too many teas without straws!

Bertha:

You can call her Bertha. The whole stupid hip problem. It reminds me why we’ve renamed some of the long-term problems. It’s just so much easier to use their nicknames than the complicated names. It also takes the power out of them.

They name themselves really, and while Frank suits my Lisfranc injury not just because of his real name, but also because he’s a slow, deep, dull pain and a single injury, he also reminds me of a simple old man.

Bertha instead is a screaming big b*#ch and she’s huge and complicated. There’s nothing subtle about her and she burns like fire!

It helps that a third of the problem is in the hip bursa so Bertha makes sense there too…

Silver Lining:

It’s been a huge week or so since that trip to the ER, with many tears and sleepless nights, not just with Bertha but the new grandbaby as well.

And yet there is one tiny, special little up-side to being bean-bag-bound: Quality time in corners away from the hustle and bustle and busyness of the hospital. Me, my beanbag, my blanket and this wee little bundle…

 

Now we just need to get some control of Bertha back!!!

The Hip!

Thanks for so much love and prayers regarding my hip. Thanks too for all the questions too. Hopefully this short blog will answer them:

What:

Apart from the bones in a hip we also all have a wide, thick, strong tendon that connects our butt cheek muscle to the hip bone. We also each have a little pillow that sits outside the bone of our hip where the skin would otherwise get a bit rubbed. And we have a muscle and tendon that connect the ball of the thigh bone to the base of our spines – along the same route as the sciatic nerve.

All three, in my right hip right now, in the words of the ER specialist, are screaming. They’re all damaged, broken, inflamed, and basically suffering in deep, long-term trauma. They couldn’t believe how much pain I’m in and how on earth I didn’t “notice”.

How & When:

We aren’t sure which was damaged first, but looking back to the Christmas period when I over did things and he had to fly back to South Africa at the last minute for a work crisis, my hip has been a problem all year. But it’s also been a problem since my pregnancies in my twenties. When I overdo things or Frank is playing up, my hip is my weak spot and I need to rest …

But over the last few months with so many trips and packing up our whole lives yet again, my usual preventative rest days had to go out the window. Then with the upload of the container I was on my feet for a whole day, then a weekend of packing the bags, a few goodbyes, flying to Australia, serious jet lag, and picking up grandbabies when I shouldn’t, …. I SO knew the pain was there.

But the reality is that the level of my day to day pain and the variations of those pain levels have disguised the fact that my hip has actually been in trouble for quite a long time. It’s a bit like the Boy Who Called Wolf – My hip has been screaming at me, and yes, it hurts like hell …. but I’ve got so good at surviving with it that I’ve allowed myself to go way past the point of what one can cope with.

It took nearly passing out from the pain at the dinner table the other night for me to realize I’m losing this battle and I need to get to the hospital (I’ll do a seperate post on that as it was extremely upsetting but in other ways amazing!).

Outcome – Minor & Major:

The only solution for all of this is rest. Complete rest, a lot of it, and for weeks or even months to come. Which I think is almost impossible of course. Because it isn’t just about lying still, it’s about not twisting, not turning, and not sitting upright….

However, some elements of that rest are way more important than others. The sitting up thing for instance. It’s not only the worst for me but it is excruciating, so it’s hard to be naughty and ignore it.

486ec7bc-1a66-4e38-8a08-6bc3e8f62343But I can’t find any position that isn’t sore, so I sent him out try grab me a bean bag and at last, I’m sitting with full support, a hot water bottle, and I can do a little writing and crocheting. But not sitting upright means the bendy straw is back in action for the foreseeable future.

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Keeping the weight off my hip is harder. Going back to 2 crutches is not too bad, but using my arms to move myself in and out of the beanbag is taking its toll and my arms are starting to suffer. So for now, while we wait for the next Grandbaby due next Tuesday, we are both taking it easy in all ways possible!

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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@JPeaSmith

 

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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Where you can find and follow Jennifer:

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@JPeaSmith

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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Where you can find and follow Jennifer:

YouTube |Blog | The Mighty | Facebook | Twitter | Pinterest | Goodreads | Amazon

@JPeaSmith

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