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Trust Me, I’m A Patient

April 30, 2018

I have recently attempted to switch from my prescription painkillers to using CBD oil for my chronic pain, which is caused by a combination of three of my chronic conditions, being osteoarthritis, sciatica and CLL.  I have no idea which causes the most pain at any one time, because they combine and cannot be separated.

No More SpoonsThe experiment was a failure; I only managed 10 full days without painkillers using CBD oil, and by the tenth morning was in such pain I attempted to knock myself out on a wall and my beloved Sooterkin™ insisted on dosing me with conventional painkillers simply so I could lie down and rest (and stop him and our cat Millie worrying about me.  What? She does worry, she’s a very clever cat!).

Now, a couple of weeks ago I’d decided never to put any status messages or public posts about my health on Facebook again, because all that happened was that lovely, well-meaning people would give unsolicited advice and question decisions I’d made which I appreciated for the sentiment and care behind them, but which meant my health decisions were not being trusted.

I have lived with one of my chronic conditions for 35 years.  I have developed others over the years as detailed in my CLL blog post and I have written about how I have learned over the years to balance my lifestyle so that I can work and have a tiny social life whilst living with the pain.  It’s not easy, it takes constant practice and working at all the time.  There is no-one that knows my body and its limits like I do, not even the medical professionals I see on a regular basis.  It’s difficult, because at the moment I have almost no social life; I have to prioritise work and at the moment that means the weekend is for recovery and weeknights are almost always out too (I can manage a Monday or Tuesday, occasionally a Wednesday, but that’s it).  I’ve had to give up learning British Sign Language, because the class was on Wednesday, give up my Tai Chi, because the class was on a Thursday and 1 ½ hours long and stopped helping and started hurting due to my conditions degenerating further, I’ve stopped ever going out on a Friday, which appears to be the night when most social engagements are arranged as people find it easy to go from work to wherever … well, you get the point.

I never make a decision about my health without fully thinking through every aspect because that is what I have learned to do.  Anyone with chronic conditions will do the same thing.

My life is shaped by my chronic conditions.  Everything exists through the prism of the seven I have.  Yet I cannot post status updates without having my decisions questioned, or advice proffered, or people stating their worry or their fears or even questioning my perceived ‘negativity’ simply by mentioning my pain.

Think about that.  Basically, what is being said is that my life is a negative.  That by posting about my life I am being inherently negative.

That is the privilege of living without chronic conditions, without disability.  My pain is neither negative nor positive, it is a very big part of me and my life.  If I should comment about it, I am simply making a statement about an aspect of my life, in the same way as I may comment about my family or my cat, a picture of whom I am putting here because she’s cute and it will lift this post.

Millie up close

Seriously, that snoofly lickle face would cheer up anyone!

I would love to post about my life fully, in the knowledge that people would not feel obliged or inspired or the need to give advice.  Sympathy and empathy is fine, and I love those who have both and hope I can give as much as I receive.  However, unless advice is specifically asked for I, for one, do not wish to receive it.  It may be that others do, although the conversations I have had with other people who have chronic pain conditions would indicate that they get as frustrated as I do with unsolicited advice (although that is definitely better than receiving unsolicited dick pics, but I digress).

The basic rule should be that unless advice is asked for, don’t give it.  I guarantee you that anyone living with a chronic condition knows more about their own body and their condition(s) that you could possibly know, and that they will have discussed, considered and questioned whatever it is you are about to suggest with many people, most of whom will be medical professionals.  Quite often they will know more than the medical professional if not a specialist in that particular field.  Please do consider what it is you are about to say, before you say it.

This post is aimed at myself too; I have offered advice and sought reasons for triggerings of chronic pain in others as well.  It is ingrained in us to do so, but is unhelpful for chronic conditions.  There usually is no specific trigger, chronic conditions just are.

Oh, and if you intend to post something to me from David Wolfe, or any other ‘alternative’ health site which criticises ‘big pharma’ or the ‘medical industrial complex’ using discredited information (misinformed anti-vaxxers, I’m looking at you) and/or evidence which simply cannot be proven or backed-up, just don’t.  I am perfectly aware of such sites.  If it is not scientifically, empirically valid, I’m not interested.


From → Autobiography

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