I have herpes zoster. Don’t be fooled by that “herpes” that is just the family of virus that it springs from and in fact it is better known as chicken pox. We have nearly all had chicken pox, it’s a children’s rite of passage, but not many people realise that it is dangerous if you catch it in later life. My son was 25 when he caught chicken pox from my grand daughter. We were all surprised at this because even his mother swears he had already had it when he was about 4. At first we thought it was a bit of a laugh but he quickly became very ill and when he said he couldn’t breathe we had him taken to hospital where he ended up in Intensive Care in a protective coma. Overnight it became very unfunny.
Long story cut short, he recovered and after a long convalescence he went back to work and we all breathed sighs of relief. Grandaughter had of course sailed through without anything more than an attack of spots. This was in 2010. In 2011 I started to feel a bit off colour, as if I was going down with a cold. At the time I was a busy person, serving on various committees, volunteering and generally keeping occupied with assorted hobbies. Gradually this all got too much and I dropped out of many things, I just didn’t have the energy any more. I assumed that I had picked up a bug of some kind and waited for it to go. After some weeks of this I didn’t feel any better and in fact I was feeling sleepy during the day and wide awake at night, my body clock was way out of adjustment.
I began having periods when I felt too tired to do anything but also there were times when I seemed to have normal energy and I was running around catching up with all the things I didn’t do before. I went on like this for quite a while, not really feeling ill enough to go to the doctor but not really well enough to go back to my usual active life. I was also having a lot of back pain, at the time I thought it was just wear and tear but now I know different.
All through 2012 I struggled with this, I would have weeks of feeling fine and then suddenly an attack of lethargy and depression would pop up out of nowhere. I was also having bad cramps in my shoulders, I seemed to keep trapping nerves in my back and making it very sore. I have a friend who has since been diagnosed with ME and for a while I thought that is what I had. My symptoms were identical. Gradually I dropped out of everything. I was spending a lot of time online in any case but now I was indoors all the time, at least it was something I could do even when not feeling well. I was becoming a hermit.
2013 was a difficult year. I started off well with a big burst of energy and I was really thinking that I was over “It” whatever it was. I was booked to attend a huge parade in Plymouth as part of the AOHL team manning a stall. I was looking forward to it but on the day I staggered out of bed feeling like death warmed up. I can best describe it as being like a hangover. I was not drinking at the time, not a drop. All the consequences but none of the fun. I had to cancel my AOHL engagement with big apologies and try to recover from whatever it was. I spent my birthday in November feeling pretty grim, I remember trying to gather up a bit of energy and smile for my kids’ sake (they always give me a nice do) but I felt quite ill, like the beginnings of a bad cold.
A couple of weeks later I had an interview with my local councillor about local matters and she remarked that I didn’t look well. I was going hot and cold and feeling nauseous and after she had gone I went to sleep. A few days later after feeling ill all week I suddenly came out in a rash down the side of my head. It was lots of little pimples, like fly bites. I thought I might have been bitten by midges but the spots turned into blisters and my face started to look a mess. It was very itchy. I decided to go along to the local hospital and get them to have a look at it. I walked in the door and the nurse looked up and said “Good morning, that looks like shingles to me!”.
You could have knocked me down with a steam roller. I had barely even heard of shingles and now I have got it! So I had a chat with the nurse and all the sudden attacks of the vapours and sleepless nights were explained! It was all down to the shingles, herpes zoster. The nurse examined my eyes and said that she could see lesions in my eyes and on my eyelids. There is a possibility of blindness when this happens and urgent attention is needed. Within hours I was seen by a GP and given a large dose of antibiotics. Normally antibiotics don’t work on a virus but in the case of zoster they have discovered that if they blitz it with strong antibiotics within 36 hours of the rash appearing then there is usually a good result. Naturally I Googled like mad when I got home.
I went off to the Eye Infirmary in Plymouth, a grim Victorian building recently closed. Again I was quickly seen by an eye specialist who also decided to call in his boss for a second opinion. Without anyone actually saying so it was clear that they were all aware of the implications of a profoundly deaf person losing sight. So I got a detailed briefing on how to treat myself, a box of horse-size antibiotic pills and some powerful eye drops. My drug regime was written down and I was advised to follow it to the letter. So off I toddled, reassured by the fact that everything that could be done was being done. Good old NHS, just for once.
But wait…. that wasn’t the end of it. Oh no!
As the rash began to clear up, the pains started. Every nerve down the left side of my face (my implant side) felt as if it was on fire. I could feel them glowing under the skin like red hot wires. All my teeth on that side started to hurt. I had toothache in every tooth on the left of my mouth. The pain was intense and paralysing, it just went on and on. I took so many paracetamols I almost made myself ill. There are no effective painkillers for this type of pain, paracetamol is as effective as any other. Not very. After about ten very uncomfortable days the pain subsided. I was exhausted, I slept for days.
The next thing was that in early 2014 I started to feel tired all the time. I would get up and carry on as normal and then suddenly about lunchtime I would be unable to keep my eyes open. I was almost passing out with tiredness. This was quite dangerous if it happened when I was out as I would have to drive home and get a quick nap, so I hardly went out. I spent a lot of time sitting in the lovely sunshine, which seemed to help but my sleep system went crazy and I would be awake all night and asleep for part of the day. I tried desperately to get past this but nothing made any difference. I was still able to spend time on the computer at any time of the day so I decided to just roll with it and let my days and nights sort themselves out. But for a lot of last summer I was awake at 3 am and asleep all afternoon!
Gradually through that lovely summer I recuperated. I was able to adjust my sleeping hours to mostly take place at night and my physical energy returned over a period of time. Christmas 2014 was a big improvement but I found that I still get tired easily. My sleep cycle is still not quite right but at least I am sleeping for most of the night and I am generally able to get through the day without a nap. I still have a lot of itching in my eyes and my scalp, it’s almost like having fleas. I had a lot of discomfort from my liver last year making eating and drinking a bit uncomfortable at times and although that improved, my innards did not appreciate all the rich Christmas food so I have had to be careful not to overdo it.
So there we are, my battle with Herpes Zoster. It’s been very uncomfortable, sometimes painful and it has practically shut down my life for a couple of years. It will never totally go away but in time I should get back to my usual self. At least I didn’t go blind, I am not further disabled and so that’s something to be thankful for. In this case the NHS worked precisely as planned.
Whether I can pick up again with all the charity work I don’t know but in fact I am wondering whether to move on to something else for a change. My objectives for 2015 are to get more exercise, reduce my waistline by about 6 inches and most of all stop sitting day and night with my face in a computer!