On first glance the subject heading I've chosen reads like 'me and parenting', but it's not. It's 'EM-EE and parenting.' M.E stands for the worst and sometimes the best thing that has happened to me and the abbreviation means Myalgic Encephalopathy. It's a big name, one I have to look up a lot and so when people ask me; "What's M.E?" I normally just mutter something about Chronic Fatigue Syndrome (the much loved GP term) and how I'm constantly worn down. But that description is deceptive. We're all 'worn down' from time to time, or feel as though we are constantly tired...whereas for me no matter how much sleep I get, or how much I don't do I still feel exhausted. I can never 'catch up' on sleep, energy and replenishing my energy stores feels constantly futile.
I can't exercise like an average person. I get blood drawn and my legs are jelly, I need to sleep for hours to make up for the tiny test tube size of blood they've taken from me. I'm religious but I can't attend church and often, through no fault of anyone at church, I feel very left out of the picture. All the friends I grew up with or accumulated in my teens/early twenties? I don't see them at all. I want to travel, even if it's just around the UK, but I need to think about where I'd borrow the energy from and think again. Anything I want to do has to be planned with a methodical precision. And on top of this there are articles written about this illness, and the people who suffer from it, every single day that have a negative edge; a suggestion that all 'we' need to do is get on our feet, get moving and do things. Surely a brisk walk in the woods or by the sea would cure us? Our government abandons us and those like myself, who are just about able to hold together a family, marriage and job don't receive a bit of help from anyone outside our immediate friends and family.
I'm fortunate that I'm in the position to work from home, to be self-employed, but there was a time when quite frankly this was out of my grasp. I appealed to my government to give me a hand up in a difficult time and they told me they wouldn't help. There were other words, harsh and awful, said but I don't want to get into that. It was an awful time; to feel like a leech, to feel like a poor person going cap in hand to the state but to know there were few options and this would be a temporary fix while I figured out how I could possibly make a living without feeling like a sick beggar. Meanwhile I'm honestly not sure how we survived; emotionally, as well as financially. Whenever things felt too much I would reach a point where I couldn't feel any more broken but it also felt like I couldn't take much more, that I couldn't go on. Did I think about ending my own life? When I was completely in the clutches of despair then yes, yes I did. I was a burden to everyone around me and on top of everything Bryan had to stay home to look after Roman and me. I wasn't going to church and I felt unworthy of everything - and everyone. I'm going to be honest here in my account and say I didn't even feel like someone's mother. I was angry all the time; so angry I couldn't sleep, couldn't think about anything else but my circumstances, about the things people said and did around my illness. I was consumed in misery, but I disguised it well.
I broke down a lot; there were tears, silences, screaming, confusion, arguments and frustration. I was jealous of my other friends who were mothers; their complaints about motherhood irritated me - how dare they be tired, how dare their children be annoying them, they were the lucky ones. The untouched, the healthy, the average, the fortunate. And yet I was annoyed, irritated and tired myself. I screamed a lot at my baby, I couldn't cope with his sheer strength and it made me feel small. I was scared to be on my own because I forgot things; I left the hob on for hours, I'd leave taps running, I'd forget to put things in the bin. This wasn't motherhood tiredness, I knew that. I also knew I wasn't depressed, despite the negative impulses to wave goodbye to my life I wanted to be alive. When things got a little bit better, I felt happy but not overwhelming happiness; a level happiness that I knew wasn't associated with depression. I'd had depression before and this wasn't it.
When I think back to my pregnancy it also left me in despair from time to time but only because I was terrified of what lay ahead for me; labour, the after pain, coping with the physical effects that every single mother who gives birth has to deal with. My mom had had four Caesarean sections and I didn't want to end up going down that road. My gran had also had long labours and I believed it was genetic, that there was nothing I could do and they'd section me. My body would be in tatters for a long time. And in a way, it was. But it also wasn't as bad as I thought it would be. And then I would spend months in a life cycle of being in bed, not wearing anything other than PJs, getting up every few days to wash or have Bryan change the bed. I'd eat all my meals in bed, I did everything in my bed. Then there were times when the sun appeared through the rain clouds, where my body would decide to award me with a day or two of energy. I remember one time I spent several weeks in bed and I woke one afternoon, after a horrible night of sleeping on and off, and I felt refreshed. I went through to my living room and didn't recognize it; everything was in the same place but it looked different. Bigger in some areas and smaller in others. My bedroom was Scotland and my living room was Australia.
Through this time I was able to breastfeed very successfully. That was another fear of mine; not having enough energy to eat so I would produce enough milk. I don't know if I ever thought about the energy expended to breastfeeding but I did notice that when Roman fed less, I gained more energy. It wasn't worth giving up breastfeeding just so I could have a tiny amount of energy, so we continued. Slowly over 21 months breastfeeding concluded one morning; in our king size bed, in the house we currently live in. I'd wanted to keep it going until 24 months but Bryan had also suggested we may as well cut the feeds out completely; by this time Roman was only feeding on side and in the morning. "Let him decide," I said to Bryan gently. "He'll stop when he's ready." And true enough, he did. Did I suddenly have more energy? Not really. For months he hadn't been taking full feeds anyway so the energy boost wasn't noticeable - which reminded me of weight gain or pregnancy. You didn't notice it until you saw your reflection or someone made a comment. "You seem better here," Bryan said to me on evening. "A year ago you couldn't even leave the house once a month, if we were lucky." I knew it was true, at this point I was leaving the house every 1-2 weeks, but mostly every week. I was also able to get myself out of bed a few mornings a week, getting up with Roman and spending time with him. I still hadn't made it to church, but I knew that wasn't too far off.
I've been to church a few times this year, which is a huge improvement for me. In the past I'd attend church no matter how I was feeling because emotionally I needed to be there, but the downside was that my physical body always took a knock. These days I've grown to be more sensible about things. If I'm to be useful to my family, who come first, then I need to think about what I'm doing to my body. If I'm to be a useful person in terms of church I need to think about my health and put that above attending meetings. Sounds harsh, but it's true. It doesn't mean I don't believe, that I'm lazy or that I can't be bothered. I'm very bothered and involved as much as I can be.
As for Roman our set up is enviable and my ideal scenario. Bryan has become self employed and he's also at college. A few weeks ago he told me; "When I think about it, you getting up with Roman every morning and looking after him is harder than me going to college." I appreciate that he recognises that and to be honest if you'd told either of us two years ago that this is how things would be now I'm not sure we'd believe you. Bryan has a full schedule and I don't always handle things with grace when it comes to mothering - and I do let the TV babysit my son - but I'm honestly doing my best and better than that...I'm doing better than I ever thought I'd be doing. I'm up every morning, sometimes grouchy, then I give me and Ro breakfast. I do the majority of the housework but make no mistake when Bryan has free time he completely takes over a majority share, too. I enjoy nap times not because I go to sleep (it interferes with my sleep at night) but because I can work, play or rest. I don't know how I'm doing this, given where I've come from physically, but I know I'm doing the best I can, with whatever energy I have.