(Taken from my book blog jilllovestoread.blogspot.co.uk)
Hi all
This has been purely a book blog since I started in Feb and my intention is to keep it so. However, I hope you will indulge me in going off topic for once whilst I talk about my illness as I feel the need to offload and reflect.
Anyone who knew me a year ago would not recognise the person I am today, me included. I don't know what happened to the old me. The person who worked 40+ hours a week, volunteered in my spare time for a bereavement charity, went to watch football, went out eating and to the cinema at least once a week, and was generally always on the go. I miss that person.
This illness has taken so much away from me. I am ashamed of the person I have become. I have become a recluse, lost contact with my friends, become unable to work, lost my independence, put on weight and lost my pride and love of life. I have forgotten what it feels like to be 'normal', to feel happy, and to truly laugh.
In August last year I got a cold that just wouldn't clear up. I felt exhausted all the time and started doing something I never did, come home from work, take my dinner upstairs and went to bed. By the start of Sept, whilst still working I had stopped going to football and didn't even have the energy to go out with my Father in Law for his birthday dinner. I went back to the GP and they sent me for blood tests. I struggled through my daughters birthday and had a week off at the end of September.
By October I simply couldn't carry on. I took antibiotics (just in case the Doc told me) and that was it. Slowly between then an Christmas I simply shut down. I remember going into the office and the noises hurt my ears, I couldn't see properly, I felt so exhausted I thought I was going to pass out, and every part of me hurt with indescribable pain. Work have been great and I started working from home. This was ok for a bit, but even that proved impossible. I was sick every morning, constantly dizzy and feeling like even sitting up I was going to pass out. I ended up a recluse in my bed. Ironically with all my tiredness i was only able to sleep for 2 - 4 hours a night. On Christmas Day I spent 4 hours out of bed, and that killed me for days to come.
My typical day by the new year was to
Wake up and feel totally spaced out. I couldn't focus, my body hurt and I had no energy.
Struggle for up to half an hour to get to the toilet
Lie in bed all day watching tv
By 4pm I couldn't bear the light and noise so would often just lie in silence and dark for a while
Eat dinner with a struggle as I didn't have the energy to lift a fork
Spend the evening in bed with no light on, using sunglasses to help me face the light to get to the bathroom
Unable to have a phone conversation as the noise was unbearable
Double / triple vision
Constant unbearable ringing in my ears
I am ashamed to admit it but I often went well over a week without being able to have a wash or wash my hair. I just didn't have the energy, and if I did, that would wipe me out for a couple of days after.
This continued up until the start of April. Not even able to sit in a room and spend time with my daughter. My poor boyfriend spending his time here lying often in a dark room with a tv for company, and me being totally dependent on my mum for everything. I couldn't even get downstairs to get a drink myself.
By March I was beyond despair. I had heard of the lightning process and so contacted a practitioner and signed up. From 1 - 3 April I did something I didn't believe was possible, I attended the sessions. That meant 3 days out of the house, concentrating and learning. It was tough but I did it. Even leaving the session each day and going over to the coffee shop for a short stop.
April became a small turning point. That same week my boyfriends father became seriously ill and was in hospital. I hadn't seen him for 6 months but on the Saturday I went to the hospital and stayed with him for 45 minutes. Ok, so I got a cab there and back, but to be able to to do it felt like a massive achievement and to me, caring about him as much as I do, he was worth the effort. Sadly he passed away that night but where that would have knocked me for six, I was able to go to the family home and spend the day there.
I realised that:
My double vision had gone
The ringing in my ears had gotten better
I had the energy to be out of bed
I went for a couple of walks
I was able to start bathing more
I managed to get to the funeral
May wasn't as positive. Whilst the double vision and ringing in the ears were still gone, I was on strong medication and spent most of May in bed dirty and smelly. However, I have only realised that I no longer needed to switch lights off in the evening.
We are now into June and almost a year has passed. This time last year I was in Ireland at my cousins wedding, then out all the time in the UK. I miss that person and I want her back. I am willing to fight and do everything I can to get her back.
Since the start of June I have done the following:
Had a bath every day
Washed my hair every other day
I have been able to go downstairs every day
For the last 11 days I have been able to sit out in the garden for a few hours at a time
Last week I went to the supermarket and shopped. I felt so weak but I did it
I have been able to start cleaning my hell hole of a room a bit a day
I have cooked for myself 4 times in the last week
I went for walks (not far admittedly) 3 times last week
I am able to sit in my living room without the noises and colours being too much. I even managed to have the tv on in there
I am sleeping sometimes up to 6 hours a night
I can make a cup of tea for myself
I can sit with the light on in the evening
I don't have double vision or ears ringing
I can go up and downstairs regularly
These things may seem simple and stupid to you all, but to me they are glimpses of hope. I don't expect people to understand as they are things that we do everyday and take for granted, but to me they are massive. Perhaps I am being deluded and that they aren't really improvements. But yesterday I even started putting together a bookcase, there is noway I could have even contemplated it a week ago.
I am hoping and praying that these are signs that I am healing and recovery will happen. I don't want to be dependent on my Mum and to be a burden to everyone. I understand their anger and frustration but it is nothing to how I feel, believe me. I just wear my mask well. I don't want to be ashamed of how I look with no hair coloured, overweight and lifeless. I want to be happy and a nice person to be around.
I am truly sorry to those I love who had to witness my demise and I promise I am doing everything I can to get better and make it up to you. I want to make you proud of me.
Thank goodness for books and twitter is all I can say ;-)
I am sorry for the outburst. I just needed to get it off my chest....normal book service shall now be resumed ;-)
