Author: Jonesy, just a human.

I am so fed up of the attitudes of folk right now. When I got ill and had to retire I lost so many friends, they couldn’t understand how being ill effects folk.
They were oblivious to the all too often need due to pain, exhaustion and medication for me to cancel long standing arrangements or at times my not arriving after having set off.
These were people that had claimed for years, decades in some cases to be the best of friends, even calling themselves family.
I spent such a long time myself in coming to terms with the effects of crohns disease, insulin controlled diabetes, fibromyalgia,  COPD, heart issues including angina, SVT and chronic heart disease, neuropathy, PTSD, and the depression and anxiety that goes with all of this.
People expect because of my size and personality,  for me to be strong. And on the days they see me I try to be, often taking on their problems as my own.
During this journey there were points I would get very low, or even angry, mainly at myself. After trying to cope with the loss of my brother Robert,  and truly struggling with that, he was 18yrs younger than me and like my son, me having had a huge role n his childhood, I lost all contact with my adult children, they only saw the grumpy side of me, believing I should just get over it. Their mum even ringing me and telling me I was  a useless cripple, and to just die. Sadly some of my family chose to reinforce this view. I still have no contact, no idea about their lives in any way.
This year though things have been even more difficult. In January my dad got very ill. We took him to A&E at Chesterfield Royal Hospital with back pain,  whilst in A&E a doctor told him he had cancer (no scans had been done), he was then moved to a ward, where they initially failed to recognise what was wrong, this caused his kidneys to fail,
He then was discharged with sepsis and within hours because we had recognised just how ill he was, we took him back in.  Then they actually did some tests and whilst we were all with him a registrar told him, and us that he had cancer in his kidneys, that his kidneys had died and he had 2 months to live.
Thankfully she was completely wrong and had no cause to say any of this. There was no evidence of cancer, but there was a blocked tube from his kidney to his bladder which again they failed to operate upon. After being told he had 2 months to live my dad lost all hope. He lost three stone and refused to eat.
Eventually in April they realised about the pipe and after further investigation, with us meeting with consultant after consultant they decided to do a nephrostomy, basically a tube inserted directly  into his kidney and bypassing the bladder completely.  The urine from one kidney now draining into a bag.
It was almost a miracle cure for him. His kidneys that were supposedly “dead” returned to full function. Biopsies had not found any evidence of cancer. There was once again hope for us. Not so much for my dad himself though. From being a very fit 80yr old, happy to be walking round a car boot or driving to France, he now was a shadow. He was around 7 stone and almost 6ft. He became frail to the point of him wanting to give up. He once discharged would only sit in his arm chair staring at the walls. His passion for cooking had even gone. He seemed just to be waiting for God. The registrar had stolen all hope from him, and even when disproved the physical effect upon him was extreme. 
Prior to him getting ill my life had been difficult, particularly in winter, and from being as active as possible in the local bike world and my club, suddenly I wasn’t seen anywhere. I lost contact with those who insisted on calling me brother (something after Robert actually took on a new meaning) and spent the majority of my time at hospital or with my folks.
In May I went away for a weekend to recharge,  and to spend time with some long standing friends and my absolute soulmate. During this weekend I planned to return early to meet up with some others for a planned event, but my bike died on me. The gearbox went and I had to crawl home.  The bike has ever since been in a mechanics garage being rebuilt at a cost I will not dare to share, needless to say I am glad I don’t smoke or really drink.
Then it was back into either being at my folks or with my dad at hospital. I had to cancel my own medical appointments including procedures that may long term prolong my life. 
It was July before things started to settle a little for my dad, but even then I was around with him every moment I could be. The problem with  a nephrostomy is that it can easily pull out if you catch it, it can cause infections inside your organs. It is pretty unpleasant. So still hospital or home for my dad.
Then the next level, he got a temperature,  and became very sick. We took him to Chesterfield Royal Hospital yet again after his GP’s failed to act, he was admitted for critically low sodium, but even though I had assurances from the medical director that he would not be discharged until his sodium levels improved, his infection treated and he had stopped being sick. They kept him for two days on adult frailty then discharged him after insisting his sodium was fine and he had stopped being sick. This was sadly a lie. Within a few hours of discharge my sister took him to Northern General in Sheffield and they immediately transferred him to Urology at Sheffield Hallamshire Hospital.
He then was transferred to ITU and remained there for a few days with critically low sodium of 108 which caused severe delirium. He was dangerously ill and also had a severe kidney infection.  Eventually after 6 weeks we have my dad home thankfully. It’s been horrible for him and my mum. He is slowly returning to being him, and now I can change his dressing so not relying upon district nurses. We have a temporary care package in place, but there is no long term plan as yet.
I am with them every day, despite my own health making it beyond difficult.  I am however not complaining. I have during this time found my true friends, those I can rely on, and one above all others, and sadly lost too many yet again because they failed to understand.
Being there for others can be difficult, it can put stress on you, physically,  mentally and emotionally,  of that I truly am certain, however I am so lucky to still have my parents, they have been part of my life from day one, through the trials and the joy.
Non of us are perfect, but we can show our true selves when those we say we care about truly need us, whether as a friend or more.
That’s my meaning of life.