Welcome to London
So I had been living in London less than four months and I had been given the biggest slap in the face I have had in many years. Pleased to be out of hospital and now at home. Confused and feeling alone. Shaken up by recent events and not sure where my head was. So much information to take in.
How would my life be different now? One thing I knew was that my life was now going in a different direction to where I thought it was going just a few months or even a few weeks before.
No more us
As well as the HIV slap in the face, Mark gave me another life changing diagnosis that he wanted a divorce. A few days before being admitted, he told me how he was feeling about us. He wanted out of our relationship and our Civil Partnership. He didn’t want to be married anymore. It was over.
When he told me I was not one hundred percent surprised, if I’m completely honest. I am grateful that he did and that he had the courage to say those words. At the time I could not deal with it. He was upset. I was ill. It was too much. There was no reaction in me. I said I could not deal with that whilst being ill. It was too much and I dismissed it, saying that I needed to get better before I could get my head around what he was saying. I’m not going to dwell on this too much as it has now gone. Though, I feel it is important to mention (You know for the book I’ll make much more of a meal out of it).
I will say that Mark has been there throughout this entire journey with me. I’m not sure I would be in quite such a good a place as I am now if it was not for him. It is easy to forget that he was strong for me when I could not be. He was strong when all I wanted to do was to curl up and to say ‘fuck it’ to everything. Though for Mark, too, this was a lot for him to take in and if I was diagnosed with HIV what was his status? Luckily his result came back as negative (One thing about being married is the sex goes out the window!).
A bitter pill to swallow
I said to Mark that London so far had not been my favourite place to live. I felt like London had it in for me. I wished I had not moved here from the security, or what I thought was the security of Dorset. If I could change it back I would. However, living in the real world it is never that easy.
I was still feeling weak but stronger than I had been. I was no longer as short of breath and that I finally had an answer as to why I had been unwell for such a long time. The hindsight card had dealt a hand to me here too. So easy to look back and see that, yes, I was ill and I had been for far longer than I had realised.
Coming out of hospital I had a huge amount of medication to take. A pill for this and a pill for that. I hadn’t even started on the antiretroviral treatment for the HIV yet. That was still to come. Yet more information for me to get my head around and to deal with.
My new routine consisted of 21 pills a day or thereabouts. I forget the exact number now. It was a lot. Antibiotics for this and that and other pills for other things. Who knows what they were all for? Information overload. I just had to take them to get fully better.
I was also ordered to rest and to put my feet up and do nothing. Sit and watch the world go by. I had had pneumonia and my lungs needed to rest. The HIV was attacking my immune system big time and my body was no longer having it.
Looking back through my diary I note that my CD4 count on 21/11/2014 was 41 (CD4 is a test to check your immune system. A normal CD4 count in an HIV- negative man is between 400 and 1600 per cubic millilitre of blood) and I had a Viral Load of 593,499 (this measures the amount of HIV in a sample of blood, for somebody not on HIV treatment, a viral load above 100,000 is considered high and one below 10,000 is considered low). These figures at the time had absolutely no meaning to me. Also, I was very thin. I had lost huge amounts of weight and I was looking tired and old. I weighed just over 11 stone (about 70kg). Being 6’ 3” tall this is not a good look!
Even though I had only been in hospital a week I quickly got in to the routine of being up and awake very early. Having my breakfast just after the sun came up and being in bed as soon as the sun went down with a few naps in between. I was recovering and enjoying the rest. Though walking any sort of distance was too much and still played havoc with my chest. To be able to walk from one end of my street to the other would have been too much. Some days just doing simple things like loading the washing machine and hanging the washing out took its toll. It was overload for me and I was paying the price for it for the rest of the day. Some days I was trying to do too much too soon.
Even though I was getting better I was not getting better quickly enough in my head. It was going to be a slow recovery which resulted in three months off work.
After coming out of hospital I was back there every few days for check-ups and blood tests. I was now visiting the HIV clinic at the Caldecot Centre, Kings College Hospital, London on a regular basis. These journeys by bus, even though a short distance from home were hard work.
December on the whole is a little bit of a blur. I had decided to start keeping a diary of my hospital visits just for myself initially. I never had any plan to write them into a blog or to let anyone else see them. I am glad I started keeping that record now; it has been an excellent experience writing things down as a way to deal with things. Especially now writing this in the summer of 2015 I don’t think I would have been able to remember as much without my diary.
The three weeks I was out of hospital had been a little bit of an ordeal overall. I was using up so much of my energy to drag myself back every few days to get checked out or to have more tests done. Maybe it would have been better to have stayed until I was a little more recovered, however, you can’t beat the feeling of sleeping in your own bed.
These few weeks were an opportunity for me to recover well enough before I started the HIV antiretroviral drugs.
1992 is not a year in which Queen Elizabeth II looked back on with undiluted pleasure. My ‘Annus Horribulus’ however, is 2014. (See how I managed to get another Queen into the blog!) It was a turning point from which lessons were gained and truths told. New beginnings have emerged. The future lies ahead on a different path to what I thought it was going to be.
In some respects, after these few months, it felt like I was learning everything from scratch. There is now another way forward for me. A new direction lies ahead. Will I be strong enough?
This article first appeared on Leigh’s own blog here.
About the author: Hello. My name is Leigh. I'm originally from South Wales though currently living and working in London. I moved here in the summer of 2014 from the south coast of Dorset, UK. I lived there for nearly 6 years before deciding it was time for a new adventure. Little did I know that on my travels over the years and the adventure that lay ahead, I was a carrier of something inside of me. I was diagnosed HIV+ positive in November 2014. This blog is my journey from diagnosis to now.
You can follow Leigh on twitter @Reimagined_Me here.