Parenting is one of the hardest 'jobs' you can ever do. Parents up and down the country post blogs everyday to bemoan about how tough they have it, how tired they are, how they struggle with daily life.
Now imagine having a chronic illness as well. An illness which is unpredictable and changes day after day. That's what I have to deal with.
Some might say that becoming a parent when you have a chronic illness is pure selfishness on the parents part. And some days I wonder if that is true. But in reality, if I hadn't made the decision to become a parent, part of me would always be missing. My daughter has been an absolute blessing and helps me to get through every day.
It's been 10 years since I was diagnosed with ME (Myalgic Encephalomyelitis), sometimes known as Chronic Fatigue Syndrome. I had just turned 30 and recently come out of a long term relationship. I had been reconnecting with my parents and had gone on a family holiday with them. It occurred to me one day during a walk that I was unable to keep up with them. Upon returning home I realised that there were other things that I was struggling with and the least amount of effort left me feeling really unwell. A few months after that I had what is known in the ME/CFS world as a crash. I couldn't get out of bed, I couldn't walk, I couldn't look after myself. It was the scariest experience of my life. Luckily my amazing parents looked after me. I moved in with them and they cared for me. My mum even had to wash my hair as I couldn't lift my arms to do it myself. I was in a severe phase and felt helpless. Imagine having flu with aches, pains, lack of energy, brain fog, temperature changes, etc, etc.... now times that by 10. That's what severe ME/CFS feels like.
Luckily for me I had some help with learning how to pace my activity and rest and found a way to cope with living on my own again. I was able to work part time, although it was very hard. Over the space of a few years I went from having severe ME/CFS to being in a mild to moderate phase (flu x2). Although I still have setbacks, if I'm careful not to overdo things I can function pretty well on a day to day basis.
I had reached a fairly good place in my life and was now ready to move on. I knew I wanted to become a mum, it had always been a life goal, but unfortunately it had never happened in my 20's because I had never met the right man. Luckily for me I met my wonderful husband at just the right time in my life and after a few years together we became parents for the first time.
My daughter is now 2 and has made me smile every day since she was born. Some days are amazing and I feel like a normal parent, but other days are tough. My husband is great, he supports me as much as he can whilst working full time. My parents are also great, they look after my daughter on the days when I am able to work and on the days when I feel too ill to manage on my own. I do feel guilty every time I'm too ill to do things with my daughter, but I try to make up for it when I can. I take her out regularly to parent and toddler groups so that she can play with other children. We also have a lovely group of friends that we have met at these groups and we try to meet up with them as much as possible.
I've turned our lounge into a wonderful play area for my daughter and our patio doors lead onto a gated decking area with lots of toys, so my daughter is able to have free play inside or outside whenever she wants to. She is a very happy girl and can play independently. However I do try to play with her as much as I can, although often this involves me sitting on the sofa during the game. We draw and read lots as she loves this. She also really enjoys her dolls and dolls house, so we often play that together. But on the days when I am feeling ill, we often just snuggle on the sofa watching a film or reading a book.
My daughter knows I love her because I tell her every day and give her cuddles and pay her attention all the time. So, maybe I can't run around like some parents or stand for hours baking or some other fun activity, but I give my child all the love she needs, whilst making sure that I don't overdo it, because parenting is a 24/7 job and I want to be there whenever I'm needed.
Of course I'm scared that I may have a relapse and return to a severe phase. But I can't dwell on that, I need to enjoy my life and make my daughter's life happy. Knowing my limitations is key to managing and sometimes that means saying 'no, I can't do that'; but I've come to learn that is OK. Having a chronic illness has made me into a better person, I've come to appreciate the little things in life much more than I used to. And perhaps this in turn will help me be a better parent.
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