Archive for July 2012
I roughed out this article from bed over a week ago. It’s taken this long for me to have both the physical energy and mental stamina to type it up. Ironic, then, that I was writing about how hard it can be to manage a fluctuating condition…
When I was a teen, my best mate had chronic fatigue syndrome. We would often make plans to meet up, but often I would receive a phonecall just as I was putting my shoes on or getting ready to go out, saying “I’m really sorry, but I can’t”. I stuck with it – I trusted and believed my friend – but I didn’t really get it.
Now I’m in that position. I get it, alright. So let me explain how it is, why I can be unreliable and prefer to say that I will let you know how I am on the day. Or perhaps we made plans, had fun on one of my “good” days, and now you’re wondering if I’m really ill at all?
Weeks 1-2: I was ill, with exhaustion and a nausea that stopped me from eating. I thought “Ok, I’ll cancel plans, and when I’m over this bug I will reschedule everything”. No problem, after all everyone gets ill now and again.
Weeks 3-4: Shit, I’m still ill. I’m spending more time in bed than out of it. What’s going on?
Month 2: Think “I’m clearly still ill… I’ll see the doctor.” Of course, I can only get to see the doctor when I’m relatively well, so I can think coherently enough to make the appointment, and drive myself over there. My GP says we will “watch and wait”. So I agree, thinking “this is inconvenient, I won’t reschedule things yet, I don’t want to let anyone down.”
Then I had a good week. “Hooray! I am cured! Reschedule everything!”
A few days later the fatigue hit me again. Oh, shit.
Eventually you look back over your diary. In my case I had the horrible realisation that not only was I still ill, but that I was still getting worse. But I couldn’t just cancel life. So I arranged to see a few good friends again, with the caveat that if I was ill, I could take a raincheck on the day. However, some places – medical departments, hairdressers etc. – require advance booking. So I made plans, in the hope that they would work out. However, it was time to write to my GP, to let him know why I cancelled an appointment two weeks in a row – I couldn’t get out of bed. He needed to know how bad things really are for me, even if he couldn’t do anything about it other than repeat that we “watch and wait”, a phrase I have grown to hate.
You come to realise that you have no control over your life. And aside from the depression of not being in control of your health or your capacity to do things, you think “how can I take the power back?” Nobody seems able to help. It is now month 9 for me and there is no sign of my illness easing.
As someone who (also) has a long term disability (a painful joint condition affecting my mobility) I already knew about pacing: the principle of working within your limits, knowing that if you overdo it – whatever that may mean to you – that the next day will inevitably be a day of pain, exhaustion and enforced rest. Infuriatingly, I can’t get this theory to work in reverse…
So if I have a medical appointment, or even if I want to go out with friends, I know that I must keep the following day clear for recovery. But even if I rest for the day before an appointment, it is no guarantee that I will be alert and ready to go on the day itself! I don’t know whether I will be well enough to get myself across town to the hospital department, despite all good intentions. And last minute taxis are expensive!
That’s why I’m unreliable, a flake, or whatever you’d like to call me. I’m at the mercy of my health, but if I’m unwell it’s not because I’ve been irresponsible, overdoing it or pushing myself too far – it’s just bad luck. When I say “I’ll come if I can” or “I’ll confirm on the day” then you know that I want to see you and I’ll do everything I can to be there, but sometimes my will is not enough.
It’s not all doom and gloom. As long as you don’t want to meet me before 3 in the afternoon, or to travel far from home, then chances are good that I will make it. This week I’ve hosted a friend (who had a 90 minute commute to see me, bless her), visited a local art exhibition cum party, and been out for dinner with family. I’ve also spent a lot of time in bed, in pain, or both, but at least that’s not been the whole story and I’ve made some happy memories along the way.
Chronic fatigue is one of those conditions that people don’t seem to believe in, until it happens to them… I see friends and acquaintances thinking this, not liking to say it until I do, whereupon they look relieved and agree. But whatever the cause of my symptoms, the illness has certainly struck me down, and all I can do is work with it. Fighting will just wear me out, and achieve nothing.
Whatever their diagnosis, if you have a friend with a fluctuating condition, please give them patience and understanding in the knowledge that it is probably frustrating them far more than you can imagine. And your continued friendship and support is probably one of the things which is keeping their hope going.
A few weeks ago, I wrote up some tips for cyclists on the Dunwich Dynamo. My husband completed the ride on Sunday morning, so I have invited him to guest post. Here are his thoughts and experiences of the trip.
Last weekend, I did the Dun Run. For those who don’t know, it’s a bike ride from London to Dunwich, leaving Hackney at 8pm and arriving 116 miles away at the beach the next morning.
You don’t get to see glorious countryside (well, not until the sun rises) but it’s fantastic fun. These are some of my impressions from the night.
One of the most memorable things from the ride is the “river of red”. As you cycle along, you’re following a bike in front, with a red LED blinking, and they’re following a bike with a red LED blinking… and so on, until the next bend in the road. But sometimes, as you crest a hill, you see a bigger part of the river – the twinkle of red swooping down a hill and working up the other side of the valley until it reaches the horizon.
And you know that even though you can now see miles of bikes, this is a small portion of the red river. If someone stood there and watched, they’d’ve already seen the river flow past for hours, and they will still see it for hours to come.
Every time I saw the river reach the horizon, I grinned. I grinned a lot.
I’d set off with a friend and FOAF, but by the time we reached Woodfood, I realized I’d be frustrated with the pace. So I said something like “I think I’ll head off at a faster pace – see you at the end. Of course, this means you’ll pass me in 20 minutes when I’m fixing a puncture!”. They chuckled good-naturedly at my unfunny quip, and off I went.
Do Not Taunt The Puncture Fairy.
I’m not saying she’s a bitch, but she does have teeth sharp enough for my “puncture proof” tyres – I guess they’re around 4000 miles old, so they’re not exactly fresh, but hardly worn down to the canvas.
Of course, it was the rear tyre of my hub-geared bike, so it took me a while to fix. Luckily it happened outside a village hall, so I could use the light of the kitchen window to sort it out by, and I could overhear the locals chatting – and have a chat myself.
The locals were a mix of baffled, bemused, (“you’re cycling where? for fun?”) and genuinely entertained by the sight. I got a fair few “good luck” wishes as I set off again. Only to stop, swear, and realign my back wheel.
In my one previous longish run, I’d navigated by poring over google maps before I set out, checking the route out in the google map app on my phone, and then pausing at junctions to check out where I was going now and for the next two or so turns.
This worked really well, and I was prepared to do the same thing.
But on the Dun Run I just followed the river, too lazy to check out the route in the way I had planned.
This was a mistake that added – I guess – 7 or 8 miles to my journey (and around 100 odd others who made the same detour that I did).
As a tactic, it also failed because during the day you see so much more – it sounds obvious, but it’s surprising how limiting the darkness is.
The patch illuminated by your light is where you are going, and generally this is not towards the pole holding up the road sign, so they’re hard to read – something that I did on my test run quite a lot.
The ride starts in an urban area, and for me the shift into proper countryside happens when you turn right at Epping. As I approached that junction, the lights went red, and every cyclist stopped. There was no real traffic to drown out the noise, so as the lights went green, all you could hear was the sound of a hundred cleats clipping into the pedal.
I don’t think I saw a single cyclist jump a red light on the whole ride.
The coaches put on by Southwark Cyclists were fantastically well done – dealing with a mob of flagging, sleepy, cyclists can’t be much fun, but it was expertly and efficiently done. If you’re doing it, I’d recommend getting the coach ticket. If nothing else, it helps prevent you from throwing in the towel before you get to the start…
Next year? I’ll do it again, but I can’t see my diary for next year yet, so maybe I’ll be busy – it may be 2014 before I pedal to the beach again.
When I do it again, I’ll:
- have a better pump. I didn’t get much air in the tyre, and while I’m sure there were track pumps about at the various pop-up roadside stalls, I didn’t spot them. My hand pump is good enough for getting enough air in the tyre to get home from work (especially given that I go past at least 3 bike shops that have a track pump chained up outside), but doing 80-odd miles on a under-inflated tyre wasn’t fun.
- strap a torch to my head to be able to see things off my path (e.g. road signs).
- be less lazy with navigation – following other people the wrong way is no excuse for getting lost.
- Get a coach ticket earlier! The Dun Run next year is the 20th-21st July 2013; coach tickets back will be sold via http://southwarkcyclists.org.uk from, I guess, around late April onwards.
I expect I’ll be asking the Mrs for an all-night pass next year – hope to see you on the beach!
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.