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One of the factors of living with chronic pain is the need to constantly review where you are in relation to Goals, Drugs and Exercises. This week I have been working with my support team to confirm that I am getting the most out of the regimes that I use.
I keep a written record of my pain management which I use on a daily basis to pace myself and then on an ad hoc basis to inform the team. This covers which exercises and stretches I do, my pain levels at start and end of the day, the drugs taken, hours slept and activities undertaken.
This type of record is very useful as it provides hard data against which comparisons can be made, preventing emotion and feelings from getting in the way of what is really happening.
The multidisciplinary team discussed how things had been going. We agreed that there was a need to change both the medication and exercise regimes. We also discussed how attitude toward recovery, specifically my determination to minimise drug use and maximise the amount of exercise and activity I was doing, could affect recovery.
During an excellent, month long, pain management course I attended in the UK I was taught the importance of coming off drugs and making every effort to improve my personal fitness. Under normal circumstances this is widely accepted as being the best practice approach toward pain management.
However it would appear that the principles are intended as a guide rather than a set of rules. They are designed for the average man or woman in the street, and not someone with the drive and determination that has served me so well in the past.
Whilst the logic of what was being said was unquestionable, it was very difficult for me to accept. The turmoil it created in my mind drove me to write the following poem, perhaps other pain sufferers might find it interesting.
The Review
Today we talked meds again;
the doctors are giving me more.
They think a higher dose,
will make me happier than before
They haven’t factored in failure
the feeling that I bear;
when my body is so doped up
I feel like I’m not there.
They tell me how impressed they are
with the way that I’ve got on
pushing through the barriers;
but they say that way is wrong.
I learnt the hard way,
success requires hard work.
without pain there is no gain,
for glory you can’t shirk.
I strive to be a person
who will not accept defeat.
Who through sheer determination
This chronic pain I’d beat.
I was taught; to keep my body clean;
To avoid drugs where I can;
that morphine can not cure my pain
so exclude it from my plan.
The doctors say that normal folk
would find these rules so true.
but it’s my determination -
that’s made my plans fall through.
Now they’re going to dope me up
so I will not feel the pain,
but I sense the weight of failure
will drag me down again.
So if I make my next review
it’s likely I’ll be told;
to increase the dose of happy pills;
and they’ll see my world implode.
John Carré Buchanan
07 September 2012
I'm so sorry, John. I really feel for you.
ReplyDeleteMy son has an illness that I can't mention here. He was diagnosed with it 3 years ago and up to now we're still tweaking with his meds. At one point he was taking 5 different meds. They all make him drowsy and empty of emotions. This last 2 months, I've taken upon myself to tweak his meds to what I think is working best for him. I called his doctor prior to doing it because I needed direction on what to do with all the bad side effects of the meds on him. He didn't respond so I went ahead and did the tweaking on my own. My son is sleeping better, have more energy to interact with others, has more motivation, and seems to be more present with us than being out somewhere in lala land. It will be interesting to find out what his doctor will tell us. I'm sure I'll get scolded. But I'll take it because now my son is not having nightmares, cold sweats, rapid heart rates, and he said his mind is much clearer. And, he doesn't sleep 18 hours straigh.
My family in the Philippines has introduced this Vital C (made in the Philippines)to me that I'd like to try, but hadn't gotten to yet. I'll give you the link to see if it's something that you'd be interested in trying. The testimonials are very impressive and convincing. So I'd like to try it for my own aches and pains to see if it works. No, my pains are nothing like yours. Mine are just the result of getting old. Hehe.
Here's the link: http://www.vital-c.com/main/?p=3168
Your positive attitude is greatly helpful in your recovery. So don't ever lose your hope and positivity, John.
May God bless you,
Tashabud
Tashabud,
DeleteThank you so much for your supportive comment. I find it a real boost to know that there are other people out ther who have an understanding of what it is like to live with chronic pain. Having run a Pain support group for almost 3 years I know that there are many others who feel the same way.
I am very sorry to hear of your son's illness and I pray that he continues to improve. Reviewing medication is always best done with a doctor's guidance, but like you there have been times when I have known that changes need to be made and I have benefited from making them. changing them formally with the doctor at my next meeting.
Thank you for the link, I will take a look when my mind is better able to process the information it contains, meanwhile I will do everything possible to maintain a positive attitude, which as you correctly state is essential to recovery / getting the most out of what I have been given.
Once again many thanks for your support,
God bless you.
John
Good morning. Definitely yes to always consult the advice and direction of the physician involved in the patient's treatment when changing doses or discontining medications. Only as a last resort does one make the changes without a physician's advice. As in my son's case, the doctor never returned the phone call. He complained of night sweats, rapid heart rate, nightmares, mind not clear, sleeping 18 to 20 hours straight. I had to do something. His next appointment is on the 26, so I'm really nervous about being scolded. Hope he won't discard us away. Wish us luck.
ReplyDeleteHappy Sunday,
Tasha
I hope you don't mind me saying that this is a beautiful but sad well written poem. Beautiful because it explains what is factual and real for you in a poetic form but also the sadness of the turmoil for pain relief.
ReplyDeleteRum-Punch Drunk,
DeleteThanks once again for your kind comment. I am really glad you like the poem, and that you caught the themes within it.
I am particularly grateful for the consideration and detail with which you write all your comments, they mean a great deal to me, once again many thanks.
All the Best
John
A heartbreaking poem. I really hope the situation gets better for you.
ReplyDelete