Hi to you all,
It's a rainy Monday morning, the boys are playing in their new matching batman onesies I bought them, we have politics on the television and me and Mr H are sitting on the sofa together listening to the politicians whilst occasionally referring the boys play.
Over the past month I seem to have been in and out of hospital like a yo-yo. The infection I kept getting in my kidneys finally made it's presence really known. I got sepsis. Not nice. Getting Rigors is not much fun, your whole body goes into spasm as your temperature rises and your immune system goes into overdrive as your body tries to fight the infections march through your body. I had to have oxygen every time I had an 'event' of which there were four and each I felt certain that that this was it this was how it ends.
I narrowly avoided the children seeing an 'event' as they were visiting and I felt it coming on. I hate the idea that children might see me being really ill though I also understand that as time goes on it is going to be more likely.
This infection needed to be stopped. The problem was that I have fistula in my pelvis somewhere, a hole in my bowel which is mixing with my urine and causing infection. The Drs feel the way forward here is to keep my pelvis 'dry' and the best way of doing this is by performing a Nephrostomy. A 'knee-frost-toe-me is where they put two small tubes into the kidneys, one each side, which comes out your back and into a bag where the urine is collected. Not ideal but if it keeps me alive then hey sign me up. So I am waiting for this to happen and in the meantime I have a standard catheter with a bag which is strapped to my leg, not nice to look at but it is performing a function. There is something quite satisfying about emptying a bag instead of having to go to the loo.
This should hopefully keep me out of hospital for enough time for me to finally make it to London for some treatment. I have unfortunately missed my treatment three times now as each time I have either have a bleed or an infection problem which has forced me into a stay in hospital.
In the meantime, Mr H has had to hold the fort with the children while I am ferried off to hospital at increasingly varying intervals. The children are beginning to see me as a visitor who offers no permanence so they go to Daddy for everything. This breaks my heart. But I understand why and realistically for me to insist that they change everything for the times that I am at home it would confuse the children something awful. So I accept the role of visiting family member.
I now feel no longer physical attractive to my partner of over 20 years whom I love dearly and previously not to give too much info but we enjoyed the aspects of a 'full and satisfying' marriage. So now our relationship relies on the love and feeling we built up for each other over this time but I suspect this has a finite limit. Anyone who may have a weaker relationship would really struggle going through this, I am certain. This all feeds into a sense of being a burden which lately I find growing despite my trying to ignore it. Obviously this is as a result of physical effects from the disease and its progress, not everyone loses the intimacy but some of us do unfortunately.
The latest medical problem, a blood clot in my leg, is not helping matters as my mobility has dramatically reduced. I cannot stand for long periods and walking is agony. I tried to have a shower this morning which was tricky. Again I see a point where all the equipment I was told I should have which I vehemently opposed is coming closer.
I haven't driven my lovely little car in months and I barely leave the house or hospital depending upon where I am at any given time.
But this doesn't just apply to me it applies to all of family H. They also have less freedom. The children haven't been on days out as we haven't been able to due to either the threat of me bleeding or feeling ill or an inability to walk. Andy can't take them all out on his own as he feels this would really stretch his ability to cope with his anxiety. So I feel even more guilty as I impose this upon us all.
The family holiday which was going to be a tour of the west coast of Scotland will not happen due to its distance from a decent hospital. However I am going to have to get thinking of some ways we can enjoy the summer a bit closer to home.
We also lost my step father suddenly, his health was poor but we were not expecting him to pass away so suddenly. This has had a sharp effect on me as I see how my mother copes with losing her dearest partner. Obviously this is kind of like a practice run for me. I shall miss him he was one of a kind and someone unique who cared for others unstintingly.
I feel like I am living in the shadowlands, that period of time where you accept that you will die in the near future but don't know precisely when.
One little ray of light in the darkness is around a friend who has been busy fighting her own demons. She has been inspired by me to chuck herself around a particularly harsh obstacle course all in the pursuit of money for the charity I love, Team Verrico. What an amazing thing to do? After losing over 4 stone in weight and still going she chose to do this for them. And the most amazing thing of all? I've never actually met her in real life. Never underestimate the power of the internet to make things better.
So currently I lose myself in politics, I keep up to date with the news daily and read and digest all the changes and events over the campaigning period. I'm determined to cast my vote that is my current goal. The other ghastly events in London and Manchester that have been happening have affected me too, more so than I expected. I think it is because death just keeps hanging around and try as I might I cannot escape it. The poor families, my empathy is with them and I understand as I have never before the loss of a loved one.
My mind just never gets a break from this shit. It is constant. I have not been thrown any crumb of hope or possibility for weeks and the effect this has upon a person cannot be underestimated. It builds up and up and up. I'd just dearly love to have a second wind now, a period of time where I feel good and able to participate in daily family life and to be able to go out and about without worrying.
It's unlikely.
I'm very sad and wish selfishly that my life were different right now.
Going to sign off now, speak soon xxx
