I’m not very good at this blogging thingy, nor am I comfortable with the subject matter but I’m writing this in the hopes it makes at least one person more at ease if they are ever in the same situation.
I went to visit my Care Coordinator and Palliative Nurse with my wife yesterday and what I expected to be just a run of the mill update turned into an emotional roller coater ride from hell.
I grew up in an environment where emotions were seen as a weakness and talking to anyone about your feelings was something never done. So you can imagine my concern when my wife opens up with the line “my daughter and I are worried about his state of mind.”
What followed next was 30 minutes of torture, firstly as my wife ran through what seemed a never ending list of my faults and then the questions started.
- How did I feel?
- What are my current fears?
- What are my fears for the future?
My wife and I had made a pledge when this all started to be honest, I was regretting that now. As I tried to hold myself together I answered each question but each answer just seemed to open the way for more questions but a common thread seemed to be emerging. They wanted me to see psychiatrist, hell these guys were just the warm up act.
The doctors theory is that my current situation has led me to suffer from anxiety and stress which in turn is causing not just my sleep and appetite issues but also some of the pain and discomfort issues I’ve been having. So I left having agreed to see a psychiatrist.
Just having agreed to the next step seems to have lifted a weight of my shoulders. Before I would sleep 8 to 10 hours overnight and then another 4 to 5 hours during the day I now find if I nap more than an hour my overnight sleep is very disjointed.
I’m a 54 year old male who is quite old fashioned in some respects who doesn’t like talking about his feelings and what I’m trying to say is stress affects different people in different ways. Seeking treatment as you would for any other health issue should not come with any stigmas towards you by others but especially by yourself.
Not everyone needs councelling but for those that do it can be a powerful weapon in our health care arsenal.
One of my favourite bloggers pet hates is when someone is referred to as being a Diabetic. I know she isn’t alone in this and a lot of effort is put in to change the way people use words.
I’ve never had a problem being referred to as diabetic and to be honest never understood why others did but I’m not them and as a sign of respect I try not to use the word in reference to anyone bar myself though I’m sure I fail on occassions.
The other day I got to wondering about why it didn’t bother me and wether I should change my thinking so that it did.
From a young age I have been surrounded by such language, my mother had epilepsy, she was defined as epileptic by the doctors and others. It was so common I still think of her in that way, though that was only part of who she was and by no means the most important part to us though it was very much a defining part of our lives.
I spent a fair bit of my childhood in children’s homes and while the name calling from other children was expected and something that could be settled by fighting the constant verbal and periodical physical abuse by those in power was something that had to be endured. I guess after years of being told you are worthless being called diabetic is a step up.
I went from there to the Navy and while you cop a lot of verbal abuse in training it is tough love and after the homes was actually a bit of a holiday camp to be honest. The same sadly can’t be said about the abuse received from civilians and one lovely day spent in Geelong will be with me long after I no longer walk this earth. In 1982 I vowed never to step foot in that place ever again and I never will.
Whilst I don’t actively practice my faith these days it is still a part of me and the power of words has long been an integral part of that faith. So referring to myself as diabetic could be empowering the disease except the word needs two things. Firstly intent and I’m pretty certain most of the time that intent is none existent, secondly it needs ears that hear and I know my ears never hear the word.
I think that last point is important, whilst many people might use the term diabetic with no venom attached ultimately a lot of the power of a word resides in the ear that hears and whilst my life experiences will mean many words are about as potent as a fart in a hurricane, that is not the case with everyone and we should do all we can not to empower other people’s demons especially in a community people should rightly expect to be able to come to for support.
I seem to have rambled and I’m pretty sure it makes no sense what I actually wanted to know was now that diabetes has taken a back seat in my health care life how do I define myself?
Cancerian? Cancerous? I never seem to hear cancer patients referred to in this manner.
When I was diagnosed with diabetes I wanted to spring into action, attack the thing head on and take control of my life back.
It took over a month to be booked in for induction to the D Club and in that time I went from expecting the worst to actually being quite knowledgeable about ways I could implement different plans to control my own health. After 2 years of testing what worked for me I finally felt as if I had a handle on things and had achieved a lifestyle that was not only improving my quality of life but was also not a massive detour to how I liked to live.
Then ironically on April’s Fools Day All that got thrown out the window once again and I needed to reevaluate once again. For the last 6 weeks I have been undergoing test after test to nail down what they originally thought was gall bladder troubles but has finally been diagnosed as Bile Duct Cancer.
For 6 weeks I have pretty much known what it was, just not the specifics, not how to attack it. Not how to take back control.
Now I have a plan that enables me fight back and strangely enough the things I have control over like exercise and diet are basically just taking my diabetes lifestyle to another level although the drugs can play havoc with my bgl’s and fitness levels. Apparently it’s a pretty decent weight loss plan though 😉
New plan, new routines, new lifestyle.
Well today is the day it all kicks off.
I face this new segment of life with some trepidation.
Trepidation I will tire of it all, tire of the stress it will put on my family and tire of the anguish it will cause me.
I’m tired of feeling alone more than anything. Not the kind of alone where I have no one to talk to but alone from sharing the world with the one I love.
Alone from sharing love.
I wish my wife understood I don’t need another nurse, I need a partner in all her forms.
I’m tired of the pain and would like some pleasure
And in one 30 second phone call the glimmer of hope is extinguished
I had a visit to a specialist yesterday, on the way home the wife described the news as promising. I wasn’t so sure.
I decided to ponder why she would be upbeat but I would be apprehensive and could only think back to my childhood for an explanation.
In the homes you would see children go on holidays to farms to work and be a companion for their children. Most left at the end hoping to be invited back next school holidays. An invitation that never came.
A lot of the time you were taken just to fill the gap left by a family member who was on a school excursion or holidays with friends but of course this you were never told as it would have been counter productive to their needs.
For some of us hope is something dangled like bait on the end of a fishing line, used to get us to behave or act in accordance with their wishes only to be withdrawn at the last instance.
Any offer that is to good to be true usually is and hope is the same. Something to be viewed with suspicion, something to be scrutinised to try and see what the other person has to gain. What’s in it for them and what harm it poses to you.
Or is it as my wife sees it a possible light at the end of a very dark tunnel.
Carbs, our go to food when things could be better. Be it cupcakes, Nutella or my favourite chips we crave the brief feeling of pleasure they bestow upon us.
But what do we do when carbs aren’t enough, when things are so bad you need something that makes you feel alive?
I’ve heard that term used by adrenalin junkies, that they chase the rush so that they feel alive. This is different this isn’t the need to spice up your life that I’m referring to, it’s when you have reached a point for whatever reason where you feel no connection with those around you. Be they family, friends or even complete strangers. You are hollow inside. You hunger.
You no longer feel part of humanity. You need to feel alive.
How do you reconnect to humanity? How do you feel alive? How do you fill the void?
I seek out pain and I’m not to concerned what form it takes as long as the void is filled. It could take the form of pain and range from hitting a brick wall to picking a fight with 4 or 5 guys so that they could inflict as much damage upon me as possible. Or it could take the form of pleasure, long finger nails raked down your back, to whips or even a lovely lady walking down your back wearing stilettos.
All can fill the void by various amounts and periods of time depending on the type and intensity of the pain but what do you do when the pain is not enough?
I haven’t felt the need for real pain for many years though I’ve still longed for the pleasure but now the hunger is back.
I’ve been told what I feel and how I handle it isn’t normal.
What is normal? How do normal people fill the void? How do they feel alive when it all becomes to much?
One of my all time favourite bands and pretty much the only one that speaks to me. https://youtu.be/JAcQ5r5nG6o
Things change and life is never simple.
I know I don’t blog often and when I do its pretty bland. With the above line in mind I am giving advanced warning to the 3 or 4 people that follow this blog that in the future you might want to unfollow if you are of a sensitive nature.
I’m not sure where I am going with this I just know if i blog I wouldn’t want to read it.
I recently spent a couple of days in hospital.
My second day was spent on a ward and in the bed next to me was deposited a man in his 60’s with diabetes, which type I’m not sure. Anyone who has spent time in hospital will tell you it’s pretty boring and no matter what tv leads you to believe those flimsy curtains are not soundproof 😯
To cut a long story short a Diabetic Educator was called and proceeded to talk to him. Every question she asked was answered with diversion, when asked what meter he used she received a 15min history of every meter he had ever owned and the people who had given him the meters.
Let’s just say that was one of the better things I heard that day from a man who was assured he had his diabetes under perfect control even though he never saw a HCP more than once unless they told him what he wanted to hear.
Whilst we spend time telling stories of our bad experiences with HCP’S sometimes it’s good to see the other side of the coin.
I wonder what stories my HCP’s tell about me?