Please rate the truth of each statement as it applies to you.

I left CBT for Pain last week with two pieces of homework. One was the familiar HAD depression/anxiety sheet (Do you feel this always, often, sometimes, or never?) and the other was something I’d not seen before called CPAQ, which was (According to its own footnote) from – I can’t find it on there though.

It’s twenty statements, which you rate with a number from 0-6, where 0 is “Never true” and 6 is “Always true”, and there begins the problem – There’s not very much that I’d describe as being always applicable with EDS, other than perhaps “I have to keep explaining what it is”.

The first statement sets the tone of how misjudged the whole sheet is, for someone in my position;

“I am getting on with the business of living, no matter what my level of pain is”.

Hmm. That could be a 5; I almost never factor pain into my calculations about whether or not I want to do something. Or it could be a 0; I’m really not getting on with the business of living very well, I barely go to work and I’m too exhausted to maintain more than the most minimalist of social relationships. I could call it a 3, to represent that it’s more complicated than that, but that would suggest that I vacillated about whether to get on with life or not, and thus that maybe all I needed was to be pushed towards embracing life a bit more. The second statement; “My life is going well, even though I have chronic pain” falls into the same trap. My life is pretty terrible, actually, but the pain is only a small part of that problem.

Like most talking therapy worksheets, a lot of the points are repeated and re-worded several times; 1 and 2 are effectively asking the same thing, and also share a central theme with 5, 6, 9, 10, 12, 15 and 19. They all roughly ask “Do you stil have a normal life, even though you’re in pain?”

3, 4, 7, 8, 11, 13, 14, 16, 17 and 20 all ask variants on “Do you put off doing things until you’re not in pain, or do you believe that if you could control your pain better you’d do more with your life?”

Leaving only 18 – “My worries and fears about what pain will do to me are true” as a unique question.

So, let’s answer all three, before going to see the therapist tomorrow;

“Do you stil have a normal life, even though you’re in pain?”

No. Christ, nowhere near. That’s not the fault of the pain, though. I have to be cautious with my exertions since I have joint hypermobility syndrome, a condition in which “But it’ll hurt!” is basically always the least of my worries. I curtail my activities sooner than I’d like to, and plan to do less than I’d like to, at the advice of the consultant at the hypermobility clinic, and at the reiterated advice of a specialist physiotherapist. Working up to the point that pain makes me want to stop usually means that I’ll have done long-term damage to my joints, and that I’ll have negated the beneficial effects of the exercise; If I swim for twenty minutes, I’ll feel like I’ve done nothing, but will have given my muscles an appropriate amount of exercise. If I swim for two hours, like I want to, I’ll feel tired out and good, but I’ll be so tired that my muscles will be unable to hold my joints together properly, and I’ll be at greater risk of injury until I recover – Or I’ll have injured myself whilst swimming anyway.

In a similar vein, when I go out for my own entertainment, I have to plan carefully in advance; I have limited mobility, not because of pain, but because of weakness and instability in my joints, and also because of the fatigue which comes as-standard with EDS. As such, I have to be very careful. If I don’t know how to get home from an event, I can end up stuck at the venue – I can’t run for a bus, or even get a bus much of the time, and being trapped somewhere, getting cold and fatigued and immobile and usually hungry, is a recipe for damage. If the problem was pain, I’d not end up stuck in coffee shops at the end of the day. The problem, in this case, is fatigue and muscle weakness.

“Do you put off doing things until you’re not in pain, or do you believe that if you could control your pain better you’d do more with your life?”

Yes, and no – I’ve been taught, by physiotherapists, rheumatologists, specialists, and just plain experience, that pain is often a fairly simple signal that I should be doing things more slowly. As such, I’ve been mostly persuaded that when I’m in a certain kind of pain, I should just lie down and wait for it to pass, perhaps whilst doing something to pass the time – Watching a film, writing a story, reading a book, maybe doing a little sculpting if I feel well enough. This is also fairly closely related to the mantra of “Take the morphine and count to three hundred”; Three hundred seconds is about how long it takes for the first effects of oral morphine to take effect, and reduce a pain from mind-numbing to bearable.

When I ignore this kind of pain, I usually end up being limited instead by the muscle weakness or joint destabilisation that it proxies for. This, of course, means that if I ignore this sort of pain, I’m often left dealing with the consequences in a less-than-optimal situation; Instead of paying attention to the first twinges and taking my painkillers when safe and warm in bed, I can end up having to try to go through the five minutes of horror as the morphine takes effect in a public place, resulting in either needing a lot of help from members of the public, or ending up needing several days of rest afterwards after brute-forcing my way to safety.

I believe that, in order to do more with my life, I would have to have more control over the problems which cause the pain. Ignoring pain, as I feel it, is irresponsible and not helpful.

“My worries and fears about what pain will do to me are true” – True or False?

True, generally. I usually don’t fear pain for its own sake, however I feel intense frustration with the loss of function which has come with it.

I fear that nociceptive pain left unchecked will result in muscle spasms – which it does – which can damage nerves and connective tissue, restrict blood flow, tear muscles, and in the absolute worst cases snap bones. I fear that untreated nociceptive pain will result in neuropathic pain or allodynia, which it can.

I have a terrible suspicion that I’ve done this wrong. That the whole point of the exercise was supposed to be to make the patient say “Oh, silly me, pain is all in my head!” but since that would be an undoing of everything that a team of a dozen professionals have worked towards for the past seven years (trying to get me to see that, often, pain is a reasonable response to something that is doing damage, and should be heeded as a warning) I’m not going to do it.

Onwards, to tomorrow!

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