Today's post from satonmybutt.wordpress.com (see link below) is a much-needed look at chronic illness from the viewpoint of the carer. In this case, it's the patient who generously acknowledges the debt he has to his partner and fully realises that taking carers for granted is a big mistake. Of course, patients who are in chronic and unrelenting pain are entitled to feel sorry for themselves at times but they can forget the effect their illness is having on friends, family and carers. It doesn't do any harm to remind ourselves every now and then that we're not the only victims here.
April 24, 2015 By SatonmyButt
I asked my wife to write a post from her point of view and it was posted yesterday, it seems to have been well received because of its honesty because people who are unwell or disabled never fully understand how it feels to be the carer.
One of the parts that I enjoyed reading was how it feels for her to hear me saying I’m in pain, from my side I have sometimes wondered about the response or lack of response I get from saying it. I’m obviously in pain every hour of every day and I handle a level of about 5, but on days when the pain soars I do tend to vocalise that and its hard when there is no comforting response from my wife.
As she said in her blog, first she has heard it so many times that she has become numb to hearing it, secondly as my wife she finds it hard to know her husband is in constant pain and so as a defence mechanism she uses that numbness to protect herself from that thought.
The problem is that when we are in pain, we are also more sensitive and so its upsetting. I’m not sure what I actually need from my wife when I tell her that I’m in pain, I do know that I need to vocalise because it somehow helps?
It’s extremely hard to explain to your wife/husband what it’s like to live with chronic pain, its hard to explain to anyone! I could be laid on the settee with my wife beside me, my miniature dachshund asleep under the blanket and my two daughters in the room and yet I can still feel like I’m alone, I’m obviously not talking about physically alone but a loneliness that is felt because I’m in pain and its constant, I am going through a whole multitude of feelings and this is constant it’s not a momentary pain that I need help through its forever.
About eight years ago I was changing the water bowl in one of my scorpion enclosures, this one was a rescue and so we had a rough idea of what type it was but we couldn’t be 100% sure, so it was ID’d as an Arizona bark scorpion which is still fatal if you have an underdeveloped immune system. I had several scorpions and knew how to handle them, this one was so quiet and unlike the others doing enclosure maintenance wasn’t a problem as it just ignored me.
I guess I became a little too comfortable with its subdued ways and so one day whilst changing the water I was caught off-guard when it turned and stung me! Back then I could walk and I went to my wife who was hoovering and said “a scorpion stung me!” “Which one” she replied, “the desert one” and she calmly told me to go and sit down and she would be there in a minute. She was calm because she knew that if my heart was beating faster then any venom would be pumped around my body quicker, she was amazing and she drove me to the hospital.
The reason I have retold this story is because the pain was quite intense and it lasted a good few days and she fussed around me constantly, she was checking I was okay, how was my pain. Over a short period of time its possible to be that way towards a loved one in pain, its even possible over an extended period but its been about seven years that I have been in pain and no one can possibly be asking and fussing for that amount of time, thinking about it like that, I realise it would even drive me mad!
I know that it’s possibly harder for my wife as a carer than I could ever imagine, she looks after me making sure I’m showered, making sure I have drinks and my meds, then she has to cope knowing I’m in pain and putting up with me when the pain makes me grouchy and intolerable, also having to see me when I can’t take anymore and I just lay there crying.
I’m so glad I don’t have to be on the other side!
About SatonmyButt
Disabled husband, father, gramps. I have CRPS, CFS and arthritis. I have a dry sense of humour and I enjoy a good moan. I don't care about race, colour, sexual preference or religion, I do care if you are respectful to others.
https://satonmybutt.wordpress.com/2015/04/24/my-side/
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