Flash Says…

Posts Tagged ‘pain

I awoke from pain last night. The cause? I was lying on a small wrinkle in the sheet. That probably sounds ridiculous to you, but it’s only in recent years that I have realised that not everyone feels this way.

As with other physical issues as I grew up, I assumed that everyone experienced the same as me and that if nobody complained it was because they were quietly putting up with their pain, and I should do likewise. Even now I don’t know whether this increased sensitivity is an artifact of the Ehlers-Danlos Syndrome that I was born with, or another peculiarity.

Memories of finding touch painful go back into childhood. I clearly recall my mother touching me, fairly lightly, on the arm. I instinctively yelped “ow!” Her voice was a mixture of laughter, sarcasm and disbelief as she said “don’t be silly, that didn’t hurt you!” But when we visited relatives, she would still remind them “Flash doesn’t like to be touched” as they approached to say goodbye. Perhaps people thought I was emotionally cold, but being touched can be physically unpleasant.

Besides pulling the sheet straight in an attempt to banish wrinkles, I’ve always had a rule about not eating toast or biscuits in bed – the sensation of trapping a crumb between sheet and skin can be quite a discomfort. I also react to a loose hair against me in bed or inside my clothes. Fortunately, I am quite bendy so it’s easy to sweep out the offender!

This reactiveness makes itself known in other ways. My husband will lovingly joke about “my OCD”. He is referring to something I call “needing to be balanced”. For example, if I touch between my first and second finger, I need to touch between all fingers in a similar manner. I feel a need to be equalised symmetrically. But this isn’t a mental hang-up. After the touch, a sensation remains – sometimes a memory of the pressure, or perhaps a tingling. This sensation difference drives me to distraction, but if I am “balanced” by touching every finger (or whatever it may be) in the same way, everything feels the same and I can forget about it.

Some feelings don’t need to be “balanced” – holding a pen, or shaking hands, can remain one-sided. I’m not sure why this is – but sensations that I don’t feel very often may need to be matched.

There are other ways that my sensitivity irritates me, in particular to taps and bumps. I am talking about something relatively slight; if my husband slaps his hand down on the arm of the sofa, I feel the jolt through the sofa at the other end. Today, he flopped down on the bed next to me and the bouncing motion hurt. If someone bumps against my wheelchair, or sometimes just leans on its handle, I feel this, certainly as discomfort but often as pain.

Rarely, I have days when I cannot bear to be touched at all, when wearing even loose clothes is an irritant, when I don’t want my husband to hold me. Fortunately, days of such intensity don’t happen very often.

So, why am I telling you about my “touch sensitivity”? Firstly, in the hope of hearing from people who can relate to this. Do you feel the same? Please share your coping strategies in the comments below. I can’t be the only one with this condition! Are any fellow “bendies” affected? Is this what is known as hypersensitivity?

Secondly, this article is written by way of explanation and apology to anyone who I’ve glared at or flinched from. Perhaps you stretched out your legs and your shoe touched my wheelchair? Or maybe you patted me on the shoulder in a friendly greeting? This is the reason why I pulled away, or gave you an irritated look. It’s about pain, and not that I am being pernickety about personal space… although perhaps what I really need is a cocoon.

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Are you wondering why my blog posts are no longer every week? It’s still my intention, but life has taken over. Let me give you an insight into living with, and managing, pain. It’s a daily juggling act.

I take two different painkillers. One, dihydrocodeine (DHC), is what I’ve taken for years. It doesn’t really have any side effects for me, but on the other hand it does very little for me nowadays. It maybe shaves a little of the edge off the pain but not enough that I can sleep, for example. It also takes about an hour to work. The other, oxycodone (oxy), works nicely on the pain. It never removes the pain completely but it reduces it to a background level so I can function and so I can sleep. It also begins to work quite soon after taking it. The trouble with oxy is that I experience two side effects. The first is constipation, which I manage with another medicine. Usually this works ok but sometimes not enough (so I don’t go to the loo for 3 days, and feel ill) and sometimes too much (so I go to the loo 20 times a day and spend that day in bed recovering). I spend about one day a week in bed because of digestive troubles one way or another, or just exhaustion.

The side effect I really hate, however, is lack of appetite. For a gourmand like me, that’s a terrible thing. I’ve gone from loving my food and eating out being a real treat, to having to force myself to eat when every mouthful is horrid.

A few years ago, I saw a programme about anorexic girls who were forced to eat – they did everything to avoid it, and to try and make their plate look clean – hiding food under the table or even in their hair. At the time that was incomprehensible to me but now, faced with even a teaplate of food, it’s how I feel. Each mouthful feels impossible and I just want the food to disappear, but I know I have to carry on until another bite would actually make me throw up. On a good day I can enjoy the flavour of some of it, but my relationship with food has utterly changed. I don’t even fancy alcohol very much and often make one drink last all evening.

So, that’s oxy for you. Sometimes it makes me feel nauseous as well but I can manage that, it’s unpleasant but bearable and compared to the other two side effects is insignificant.

Now imagine you are in bed at night. You wake up. Damn, the curtains are still dark. You reach for the clock – it’s 3.30am. Although you were in bed early, you know you were still awake with pain at 1.30am so the most you have had is 2 hours sleep. Back at midnight you’d taken the DHC but it doesn’t seem to have done much. Now everything really hurts; your knees have a burning pain. Your hips have a more stinging ache, and your ribs ache on the side where you’ve been lying.

You try turning over – grabbing hold of the headboard to haul yourself up, so you’ll put as little weight as possible on your hips and pelvis. Wincing as you turn, you rotate, and this relieves the ache in your ribs for a few minutes. You gently tuck some duvet between your two burning knees.

Turning over hasn’t helped. Light glints on the blister pack of oxy by the bed. You know it will block you up and also make you struggle to eat. But you’ve only had 2 hours of sleep and are desperate for more. What choice do you have?

Nobody ever feels like they have enough – but even when you spend half the day in bed, it still isn’t enough for me.

I’ve always needed a good ten hours of sleep, but that’s grown lately as pain interrupts my slumber and stops me getting a good run of deep, good quality, sleep. Now, I spend 12-14 hours with my eyes closed, either dreaming or hoping to be.

It’s not 14 hours of blissful sleep – the last 3 or 4 hours are spent dozing in pain, even dreaming about it. From the moment I lie down, my lower back is conspiring against me. When I wake in the small hours, the pain is bearable, but by the time my husband and dog wake at 6.45am it hurts to move, so much that I have to hold the bed frame and lift myself between positions, rather than daring to roll from one side to another.

Other people just don’t get it. When I hand my phone number to people I ask them to note “afternoons only” next to it. The response is usually envy “Lucky you, I’d love to be in bed for that long!” – missing the point that only I’m in bed because I need the extra sleep. I can’t function without it. I certainly struggle to get out of bed any sooner.

My friend Anne lives with a sleep disorder, so she knows how I feel. “Basically I am sick of people saying they wish they could sleep anytime (er, no they don’t). I think people don’t understand because it’s a more extreme form of something that affects us all – just as people don’t get that depression isn’t just feeling a bit sad, they don’t get that sleep disorders aren’t just being a bit tired, and I can’t just try a bit harder to get up.”

Needing so much shut-eye is a real inconvenience. Because I’m only up for 10 hours, I have limited ability to work. I certainly couldn’t fit in an 8 hour day. Like everyone else I need time to eat, and to relax – and what about commuting time? Even being self-employed and working from home, the shift in working hours is unhelpful. By the time I start work, I only have three hours before the clients I’m chasing will clock off.

Anne’s situation is more difficult: “I spend mornings in a fog. I don’t want my workmates to know because I don’t want them to question my capability, or think I’m lying when I say the train was late. People do think it’s funny, and it’s hard to explain that it’s not. I sleep a lot at weekends to catch up…”

I can sleep through all sorts. Doctors’ appointments, meetings with friends…. alarms, the dog barking, the doorbell… I have to arrange that I will only meet up with people if I’ve already sent them a message to say that I’m awake. Otherwise, I’m dead to the world while they are patiently waiting in a cafe. Sounds amusing, but it’s frustrating to have to plan.

Of course I use alarms! I do want to get up, and I try to. This morning the first alarm went off at 10.15 – I have a vague memory of fumbling with my phone until it stopped sounding. The second alarm followed at 10.35, and I turned my bedside light and radio on in the hope of staying awake. No joy, because when the final reminder sounded at 10.55 it was all I could do to wake enough to turn it off. From there I dozed for two hours, through hazy memories of Queen, Elbow, an interview with the Pet Shop Boys, and news about bombing Libya. Frequently, the pain grew, and I hauled myself over to lie on my other side for a while, my body needing to get up but my brain refusing to wake.

Eventually, the thoughts became less hazy and more realistic – when I realise I’ve started planning some gardening in a coherent manner, it’s time to get up. I sit up, and discover that I’ve missed a call from my father which I really wanted to take, and it’s already 1pm. Yet again, I’m starting the day on the back foot.

I love the few hours a day when I really feel alive – but I can’t help thinking that this is how I used to feel all day, every day… I really need to function fully for more than a couple of hours, because I’m having to choose between activities – grocery shopping? Exercise? Or work?

So next time the alarm sounds and you groan at the thought of starting another day, think of me, and all the other people who would like nothing more than to be able to join you in it.