Are you still here?

I keep meaning to pick this blog back up but then do nothing about it. This is a combination of my chronic procrastination and also the fact that now I don’t have any problems with my ileostomy I lead a pretty full and borderline normal life. This will be the second time I attempt to make a serious effort to pick this back up regularly. I enjoy writing and if I could it would be what I would do for a career, alas this is unlikely and it will remain my cathartic megaphone to the masses or at least the 12 people that might read this by accident.

So there have been may a development in my life since the last time I wrote a proper bit on this. This is basically an elongated Facebook status. Since my last surgery life has been pretty cushty. So I am now working for a local homecare company managing their complex needs desk initially. This involved the day to day running of this desk which provides care to people with serious physical disabilities, mental health issues and long term care such as people that need live in care. However, my job role has recently changed to solely focusing on the marketing of the business for my desk and the standard elderly short calls. It’s a rewarding job and I enjoy it a lot, not to blow my own trumpet but I’m not bad at it either. The people I work with are fantastic and have found a bunch of great new mates.

It’s rewarding to see your making a difference to people’s lives young and old. It does make you question things about our society such as how we care for our elderly who, at the end of the day, are people’s mothers, fathers, brothers and sisters and in some cases a sad look at how little a family want to be involved in their care. I’m well aware there is always family history but as a society elderly care has become a very clinical thing. When you get old you go into a care home and at some point you will die there, in a hospital or a hospice. Up until the 80’s up to 80% of people died in the comfort of their home with their family looking after them. At what point did we become so above caring for our loved ones who raised us and wiped our arses and nursed us when we were sick as children. We too easily palm our loved ones off onto the care of others. Out of sight, out of mind.

So my health has been pretty good. I had surgery nearly 3 years to the day after my first to deal with a very large angry abscess in my abdomen that refused to respond to antibiotics. As a result of this they removed all of my large intestine and gave me an ileostomy which has been so much more convenient that a colostomy. I really have been able to lead a practically normally life with this without having to worry about changing bags having leaks. Yes, you have the odd problem now and then but generally it’s pretty well behaved. However, at the end of my last hospital stay the NHS finally decided they wanted to investigate my high resting heart rate, to the point they weren’t going to discharge me after my surgeon said I could go home. I promptly told them to do one and I would be discharging myself if they didn’t let me do the test as an outpatient. My surgeon convinced them that this would be ok as I had it for years and it hadn’t been a problem. So eventually I have an ECG and an echo on my heart which showed that my left ventricle had a slight impaired function so nothing major to worry about but we will refer you to a cardiologist just to make sure everything is ok.

Last week I went to see said cardiologist at the Royal Free Hospital. The consultant was very pleasant and took my full history and organised an ECG and an echo on the spot as he didn’t have access to my full previous results. So the long and short of it is that my left and right ventricles are only working at 55-65% and that I will need to take beta blockers for the rest of my life to prevent any further damage. He also informed me that should they not work I will be looking at a significant impact on life expectancy. Cheerful thing to be told and another problem unrelated to Crohn’s I now have. Fuck it. Got to keep your head down and soldier on. However, it does mean I can’t go near a gym as I was specifically told no exercise until they get it more sorted than it is now. There is a chance of the beta blockers actually fixing some of the damage but the way I was told the consultant didn’t sound too optimistic. It’s another thing that I will hit head on and overcome. I have good people round me and that counts for everything.

 

Until the next instalment of pure hate. Stay safe.

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4 thoughts on “Are you still here?

  1. Keep your pecker up young man. I have been on Beta Blockers for 18 years so hopefully they will work for you. I admire your resilience. You probably don’t realise it but you are a superb example to others.

  2. So, you’re not dead then? I picked up on your blog some time ago and read your archive stuff, admiring your resilience with a debilitating condition…but all things change, glad to see you get your life back, in a much better state. Keep writing, you do it very well. And best of luck with the beta-blockers. 🙂

  3. You know I love you Hastie and you will get through this ….beta blocks,healthy lifestyle and so much love coming your way from friends and family.
    At least the problem has been found !I
    Please keep writing I think your gifted ….enjoy your blogs….please write more.
    Love loony Aunty Laura xxx

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