or why we are welcome to third day, a day early. I have just spent two days going through some, umm, less than pleasant symptoms, that left me unable to stand for pain, so severe I was physically sick, constant nausea, aching joints, unable to sleep, dizziness, and sundry other delightful things of similar nature.
The damn patch wasn’t working. So, not only no pain relief, but the start of drug withdrawal. I have learnt two very important things:
1) the patch (when working) is necessary because the pain is now so bad underneath the mask it provides, aka perspective
2) the prospect of coming off the patches is mercifully unlikely, as only a wonder drug or miracle cure could allow that to occur. Merciful, because now I have an understanding of what that process would be like, aka dread – or fear.
So, I have perspective and fear now to counter my gripes about side effects. I am once more sleepless, as new, working patch settles in for its 72 hour sojourn. Oh, did I notice the difference within an hour, two hours. I was even able to attend, albeit gingerly, hydrotherapy a few more hours subsequently.
So, while I know it will cause much teeth gnashing, and sackcloth & ashes to be contemplated as the fashion de jour, nonetheless I feel third night grumbling must cease.
Perspective and fear now balance pain and side effects. Now I know how bad it is underneath the boon, the gift of access to pain relief, (not entire, no, not perfect, and sometimes, not even as effective as I need on the worst days, when some unknown small movement sets EB, evil back, off again).
However, there is only so much it can be expected to do, after all, hence my daily small exercises, the effort to drag this uncooperative body into the bitter cold night to the blissful relief of immersion on water, to strengthen the supporting muscles around the damage, to lessen the strain, to protect what is left. For general health and well being, and oh, that feeling when I enter the water, and gravity stops bothering EB so much…
Acupuncture and a further short physio course upcoming will also help. The strange magic of a simple wheat bag. I am even trying RPG & action based games as additional pain relief, more on that later…
My wheelchair takes so much of the load, though as I get stronger with hydro, perhaps…a little less…but if I could lessen the patch dose vs less wheelchair time, despite fear, I would choose wheelchair every time. Drugs are bad, mm’kay? Except when they aren’t – so no wonder it is so confusing for teens…
So, I am not helpless, not entirely hopeless. In an odd way, this has helped me realise that, and I need to know that. The years ahead, they stretch darkly long at times, when pain, tiredness, and nausea pervade, and despair lurks at the edges of your thinking. Odd, using perspective and fear to help battle despair. I guess the world of the disabled, of chronic pain sufferers, is a very different place. I am most definitely NOT in Kansas anymore, Toto…
So I shall return to the first book in Simon Schama‘s most excellent A History Of Britain, try to muster some traces of rest for small lad’s 7th party at Macca’s tomorrow(real fear!;) ), and bid you all safe journey through your realities:)
Here endeth the rant (well, this one)
Total empathy on the suffering of withdrawal but also the bliss of hydrotherapy.
It was a relief to learn that withdrawal will not kill me, but I found out that one would rather be dead when going through it. So I wouldn’t wish it upon anyone and it distresses me to know you have suffered so much.
The world of chronic pain and chronic illness is a different world and, as much as it is nice to have friends try to understand it, it is not nice for my friends to understand it by experiencing the horrors of it. I am very sad that you are going through all of this. Many consoling hugs to you.
I would like it if you could elaborate on your perspective next time we have a chat because I am not sure I understand the fear side of things (per your point 2) above) and how that balances out side effects. Are you meaning that the fear of all the withdrawal stuff helps you to cope with the side effects?
I am glad you are finding other resources to complement the patches; e.g. wheat bag, balancing activities and choice of mobility aids if required. When do you see the physio? I am interested to know what they advise. I envision exercises of some description as they always seem to prescribe.
Yay for you for getting to the pool. It has so many benefits – I am sure it will help a lot. How often do you go? I am supposed to go twice a week but I can only afford (in time and money) to go once a week. The benefits may not be noticeable from week to week, but after 6-12 months, if you look back to how you were when you began, you are bound to recognise some improvements.
What is important is to do it. You don’t have to push your limits, just gently do it and as long as you do it frequently and regularly, it will do you good. The relaxation aspect also helps with one’s ability to navigate the emotional minefield of living with a chronic condition.
It’s hard work staying fit and functional but nothing worthwhile comes easily.
Keep up the good work. Thank you for sharing your progress with your friends here.
Hugs,