As a child I was always pretty outgoing, adventurous and had lots of friends. I wasn’t overly bothered about how I looked or what other people thought of me – I was happy despite pretty major medical issues that saw me in and out of hospital through childhood, culminating in a kidney transplant when I was just 12.
Throughout secondary school I worked hard and did well enough to be able to study at university, something I’d always wanted to do. There were only few things I really wanted out of life; I wanted to get a good job, get married, buy a house and have kids. Nothing too out of the ordinary. Things were on track, I graduated with a 2:1 honours degree in English language and linguistics and went on to return to my home area and the following year got married to my wonderful hubby. I had tried a few jobs but nothing really caught my fancy until I started working part time with children – wow I LOVED it. It was so rewarding and I felt like this was what I was meant to do. I knew I wanted to teach so applied and got on a local course to be a primary teacher, things were still on track. I’d dream of all the things we’d be able to do once I was a teacher. I’d work hard, we’d save hard, get a house, go on holidays – not too over the top but more than we’d been able to do on just hubby’s wage and my part time work. Then just before starting the course, out of the blue, after a regular blood test I got the phone call any transplant patient prays they will never get – “your kidney’s failing” after nearly 12 years of getting me through the kidney was losing function and I was rushed to the hospital for them to try and save it. They couldn’t.
The next day they started the treatment that would keep me alive – dialysis. I would have to be treated a number of times a week for 4 hrs a time until I could get another kidney transplant. It would do the job of my kidney, removing fluid from my body as well as cleaning my blood. It’s harsh on your body, dialysis, and comes with pretty major lifestyle changes; fluid restricted to just 1 litre a day and massive dietary restrictions. Not to mention the side effects; I started losing weight – to many that must sound like a plus but believe me at the rate I was losing it, it was awful. My hair started falling out, not huge clumps but masses and masses of strands of blonde hair everywhere! I got eczema and my skin went dry and thin. I was really tired, anaemic and ended up having to have a couple of blood transfusions in the first weeks as my body went into some kind of meltdown. But I kept going. I thought to myself ‘I won’t let this stop me getting where I want to go’. I thought about my dream to be a teacher and decided that being on dialysis wasn’t going to stop me! I fought through and started the course.
It was great! I love learning and there was so much to learn. College helped me work around dialysis and despite being at the hospital until 10pm some nights then back home and back to college for 8.30am the next day I did it! Until I had to start my placements. The first one I made it through fairly well. It was tough and I could feel the pressure to get work planned and prepared ready for the lessons then mark and grade work but I still kept going. Unfortunately second placement didn’t go as well. The school was and still is one of the best near where I studied, they use and implement strategies that allow children to develop so many sides to their personalities and embrace different styles of teaching and learning – but for me it was too much. I couldn’t do it. I tried so hard but I couldn’t plan lessons in the detail they wanted or give as much time to after school preparation or extracurricular activities (I was still going to the hospital 3 evenings a week) – I really found it was all too much, I was permanently tired without the ‘get up and go’ that a primary teacher really needs. It came to a head when I was called to one side by one of the mentors who basically said that if I stayed to finish the placement they were going to fail me. She also went on to say that not everyone was suited to teaching and maybe I was one of those people.
I was gutted, no, I was DEVASTATED! I’ve never taken failure well I’ve always thought I could do anything I put my mind to, and to top it off this was my dream on the line, my opportunity to be a teacher, to work with children. Being the stubborn fool that I am I decided that no one was going to stop me and this was still what I wanted. Despite feeling as small as I could be, my confidence in myself shattered, my belief that I could still somehow achieve this was like a little spark inside; I clung on to my dream.
I redid the second placement at a different school. But I didn’t feel like me anymore. I felt that maybe I wasn’t as good with children as I thought, that my ideas weren’t creative enough. That the children weren’t learning what I should have been teaching them. That they’d find it boring and not only would I fail but these kids education would be ruined because of me. It started to get me down and by the end of the placement I’d regained a bit of my confidence. I passed the course and graduated 6 months after the rest of my class. I was buoyed by the thought that I could soon teach. That I’d be able to have my own classroom and children to teach, all I needed was a job.
A job, yes, that’s all, a job. You can probably guess a bit of what comes next if I just say the words ‘budget cut’ … the schools where I lived (which was on an island not mainland uk) were told that they wouldn’t be able to employ any new teachers for the foreseeable future. Jobs were being cut and existing staff redeployed. In the 18 months after I graduated I think I saw 2 or 3 advertised jobs and by then another lot of fully trained primary teachers were also looking for jobs.
I had a couple of days supply work, here and there but so few and far between I began to lose hope. My health began to deteriorate and I began to suffer chronic side effects of dialysis. Blinding headaches that could only be cured with IV painkillers, unable to keep food down, not sleeping. My mood hit rock bottom, I spent every session at the hospital crying constantly for hrs on end. The nurses could see I needed help buts it’s also something I’m not very good at – asking for help. Eventually it all became too much and I agreed to see a counsellor. I was diagnosed with clinical depression and started tablets and therapy with a psychiatrist. Not long after I was diagnosed with endometritis which made my ‘time of the month’ last for 3 weeks out of 4 with excruciating pain that literally meant I couldn’t be without a water bottle or heat pad and masses of painkillers. They decided to do some investigating (as I’d previously queried about having children) and then dropped probably the worst news I can imagine – ‘you will never be able to have children’ – wow – I was stunned – why? Along with several other quirky internal plumbing arrangements I also had 2 wombs! Neither fully formed, neither safe enough to ever have children. The best and probably only solution? Hysterectomy. I was 25. They took it all out on Valentine’s Day that year. A date I shall ever be able to forget.
It didn’t bother me so much at the time. Few of my friends had children and so despite knowing it was one of the things I wanted I didn’t really think about it. Then my stepdaughter got pregnant ( my hubby is a `few` years older than me) – she was only 16 and it was a shock to us all – again it didn’t bother me too much – we didn’t see them that regularly – and don’t get me wrong I ADORE my hubby’s 2 girls – but there was a little niggle, an, it’s not fair, in the back of my mind – I pushed it aside and she had her son, again little niggles but I was happy for her.
As the years have gone on more and more friends and family have had children. At one point I couldn’t cope. I was still fighting the depression and each time I saw a little picture on fb or comment or yet another scan photo it would plunge me into a dark hole of misery, jealousy and then anger at myself for being jealous – I knew it wasn’t any of my friends/family’s fault – the world didn’t revolve around me and just because I couldn’t have something didn’t means others couldn’t. I also began to realise that by hiding away I was cutting myself off from the very people who keep me going – my friends and family who had been there for me through all my problems – I didn’t tell anyone how I was feeling but those closest knew what was wrong.
If I did share with some people the responses stopped me sharing with others – ‘oh you can just adopt’ (no sorry my health means I’m discounted already – hardly makes for a stable home for a child to be put into with me in and out of hospital constantly) Until I came to the realisation that I couldn’t even look after myself properly (I wasn’t eating much, not sleeping, spending days in bed or at the hospital and crying at the drop of a hat) let alone a child! The realisation that it wouldn’t be fair for me to have a child (on the child) took a new spin – I knew I had to start sorting myself out – it wasn’t easy though – I started coming out of the darkness. I began to teach myself to go on fb for a little bit at a time and if I saw baby/children photo to comment just saying something nice about the photo or wishing them all well. I began to enjoy seeing children’s development and antics and hearing the stories of what they had been up to. It’s taken a long, long time and it’s still hard and just one aspect of the things I’m struggling with but I’m beginning to accept it.
So I’d managed to slowly begin to bring myself out of the dark hole created by myself after the hysterectomy, but there was still my dream of teaching – throughout the months I was struggling with severe depression I hadn’t done any supply work. To be honest nothing had come my way. People knew I was ill and so didn’t want to make me feel like I ‘had’ to work so stopped asking me. I started thinking more about myself and what I could do and not do – and what I was mentally able to cope with. And I came to a very hard decision. One of the hardest I’ve ever made. I decided to walk away from my dream of being a teacher. I knew that at that point in my life I was not very good at being around children despite starting to accept how things would be for me. And I found the thought of seeing parents meeting their children with love and hugs at the end of the day excruciating. I also realised that if I was ‘normal’ and had kids of my own I wouldn’t want a teacher like me teaching them! I wasn’t fit to teach. I had lost a lot of my creativity and fun. I’d started to question every decision I made in case it was wrong. I had no confidence in myself or my abilities. I was at a very low point.
With the decision not to teach came a whole lot of other questions; what would I do? How could I move forward? What was my purpose in life? It took a long time and a lot of thinking and discussing the future with my hubby, going through the options. I would never commit to anything as I was never sure we would be doing the right thing. I dithered about everything until a decision was pretty much made for us. Hubby was made redundant. With him out of work and me still a mess mentally and physically from the dialysis we both hit rock bottom. No money, no health, depression and a desperate knowledge that we had to do SOMETHING finally allowed me to make the first major (and it was pretty major) decision in years. We had to go, move from the Island we had both grown up on and start anew. Somewhere with jobs for hubby and healthcare that was more suited to me (I wanted to do my dialysis at home to save the constant trips to the hospital). I knew if I could regain some sort of normality, a routine maybe even get well enough to get a little part time job it would help me both get hold of my mind and my illness.
We moved, hubby got a job straight away as a bus driver and we started our new lives. It wasn’t easy and I wouldn’t recommend it to all but for us it was what we needed. I began treatment at another hospital in preparation for having dialysis at home. The difference way instantaneous! I came off treatment and felt wonderful! The best I had in years. I didn’t have a headache I wasn’t sick between sessions. I could do things again. I had energy and began to come back to life. It took a few months to get treatment at home and it was hard for the few weeks of being at the hospital in terms of travelling over and hour each way just to get there and back, but I did it and I felt some of my old determination come back.
But in terms of dreams I was still in pieces. I knew I couldn’t teach but as that had been what I wanted to do for so long id never considered what else I could do. And I had to think of what I was physically capable of. I wasn’t allowed to lift anything heavy and I hated working in confined offices. I also knew I needed to get a job quickly as financially we were struggling to make ends meet. My hubby was on a good wage but it wasn’t enough with all the bills that kept coming in from water to council tax they seemed never ending and we were starting to get into financial trouble. I applied for many jobs but the country was still in recession and jobs hard to come by. Eventually after about 6 months of applying for anything and everything I got a little part time job in a supermarket – just 16 hrs a week but better than nothing. By this point I was having my dialysis at home which was working much better for me. I looked healthier, had more energy and was beginning, slowly to return to a more positive state of mind. But things were and are still are a struggle. I had given up on my dreams of teaching, I’d come to realise and accept that I would never have children and after doing some research also discovered that no one would give me a mortgage probably ever due to my health issues and unknown life expectancy so I would never have my own house.
When everything you’ve ever worked towards is suddenly whipped out from under you it’s hard to get back on an even keel. I was floundering in a sea of uncertainty. What was I going to do with my life? What was my purpose? Where did I fit in? What was the point of it all? – I never felt like ending things – mainly because I couldn’t do that to the people I love. The people who worked so hard to keep me alive despite my parents being told if I lived to see my 10th birthday I would be doing well! I kept going in a haze of routine – work dialyse work dialyse… but my mind was constantly racing, thinking, questioning over and over. Trying to find answers? I’m not sure. Trying to place the blame somewhere, with someone, anyone, even myself, my parents anyone – but there is no one to blame for anything and I soon realised that anger was not a solution.
I also realised that there was no solution to the way I was feeling except by accepting my life and the way it was now. I realised that I have technically got a terminal condition. It’s not cancer, or heart failure but it is terminal. Without my dialysis I wouldn’t last a week. Seriously that’s it. It’s the only thing keeping me alive. I knew that to sort my mind out I had to accept and move on. Easier said than done. I have struggled to this day to accept and move on but recently decided that I had to try and make more of an effort to rediscover the simple things I love. I started to read again – something I hadn’t really done much of in years. I started taking better care of myself – trying to make and effort is hard when you don’t like your own body – I’ve lost so much weight that I’m in age 10-11 clothes and I’m nearly 30!! I have scars all over and my arm looks like a drug addicts with needle track marks everywhere from the 5 sessions of dialysis I do every week. But I’m seeing them more now as battle scars and an opportunity to raise awareness of kidney issues – if people ask I tell them what caused it now instead of trying to hide it.
I have a new job in a hospital that I love! I love helping other people and although my job in not front line I know what I do helps people who are ill and need medical advice or intervention which is a massive boost for me. I’ve stopped always trying to please other people and questioning my own decisions. I still get scared that I might be doing the wrong thing or that I might offend or upset someone and a little voice inside is always questioning but I’ve learnt not to always listen to the little voice! I’ve started putting myself first again. And I’ve started celebrating small achievements and positive things. Like getting my new job, being asked to be a witness at my brother’s wedding or just getting the house cleaned or the washing done!
It will be a long journey but I know I’m starting on it now and I know that things can and will get better because I’m determined to make sure that they will be. I’ve made a new list. Not of dreams, as I still find imagining things that I’d like to happen hard (I always think ‘oh it won’t happen to me’ or ‘oh it’s not going to be possible because of my health’) but I’ve made a list of things I’d like to do or places I’d like to visit. It’s not very complicated or ambitious but I’ve learnt to start small and eventually I’ll work up to bigger things, basically they’re realistic targets that I hope to achieve in the next 5 years – just things like; I’d like to go and see a show on the West End in London. I’d like to go to an F1 race. I’d like to visit Paris with my husband. Just little things that I really would like to do. I’m not going to let my medical issues get in the way of me doing things that I really do want to do I’ve just had to learn to adapt my expectations.
I started writing this after reading some of the articles on WMW which really inspired me to put onto paper some of the things I’ve been through and share them with others in the hope that they can find some comfort or benefit from my words. I don’t pretend to have the answers. I still have black days where I don’t even want to get out of bed, but I think I’m coming out the other side, slowly but surely, day by day. Writing this has been a huge help for me personally and has ignited my love of language again.
I started off intending to write an article about trying to rediscover myself and my confidence but throughout I’ve found it is all so closely linked in my case to my medical condition, depression, anxiety and self-esteem that they had to be included making it much more of a blog than I originally intended. I know many people who know me really don’t know any of this and I’ve never intentionally hidden it but I feel a sense of relief at finally committing to paper how I’ve been feeling. I’m still worried about if people will like it and if I’m doing the right thing by putting it out there but having read some really inspiring storied I feel that I have plucked up the courage to be able to do this for myself.
Thank you for reading. L x