Monday, 11 June 2012

The challenges and blessings of motherhood with Chronic Fatigue Syndrome/ME

There is no getting away from the fact that living with Chronic Fatigue Syndrome/ME and mothering a small baby is HARD. I don’t want to be self-pitying (this is a struggle of mine!) but it is definitely the toughest challenge I’ve ever faced. I always saw myself having children and it’s difficult to get over the disappointment sometimes that this is my experience of it at the moment. I love being a mum. Maybe some other mums are longing to get back to work at this point (I don’t know – they don’t really mention this at baby groups!), but I am more than happy being at home and focussing on parenting and household tasks for this season of my life. I just wish I could focus on it fully! My spirit is willing but my body is weak it seems! I daily see all the things I want to do but can’t do them – it’s like being trapped in your body sometimes. Not just the ‘exciting’ things like going for a long hike or an all-day shopping trip but simple things like cooking my husband a meal, looking after my baby on my own all day or cleaning the house. It is such a challenge to lower my expectations of what I can accomplish in a day so that I am not constantly disappointed or pushing myself far too hard.

It is humbling to have friends, family, strangers or even your husband constantly doing your laundry, cleaning your house or preparing your food. The hardest thing though, is letting other people look after your baby. All of me wants to be with him continually and provide all his care but I just can’t at the moment, it is too much for me. It is awful on my bad days to feel too weak to carry my baby upstairs or to wish that someone would take him from me as he’s getting so heavy! Sometimes I cry out to God and ask him why! “Isn’t mothering hard enough as it is,” I say, “without having to cope with this on top of it.”

Hopefully things will be different in the future but this is how things are at the moment. One thing I am learning is to accept my circumstances. It doesn’t help to be constantly wishing things were different, instead I work at rejoicing in all circumstances and keeping my eyes fixed on God. This attitude really helps me in my fight against depression and anxiety. Maybe I’m naturally a ‘glass half empty’ person but it can be a challenge to see all the blessings in life. Though once I start looking I can see so many things that I have been given that are really positive. One such positive is the fact that Matt has been able to spend more time with his son in these early days than most dads. Also, it has been great for Levi, who is such a sociable baby, to have other people around coming to help mummy. I know that he will never be a clingy baby! I have been given so many new relationships and that is brilliant for someone who finds it a little difficult to get to know people sometimes. I never get lonely during the day when Matt’s at work and I’ve seen a real loving and generous spirit in people that have given their time and energy to come and help us. My support network is amazing and a real gift from God.

I have also learnt how important it is to be real with people and tell them how I’m really doing or feeling. Without this they don’t fully know me and aren’t able to help me in a way that’s appropriate. I’m realising that in the past I’ve so often put up a façade, pretending that everything’s fine, even with those closest to me. I’ve been ashamed to show my faults, weaknesses and insecurities to people in case they reject me or laugh at me. I can’t do this any more though. People have now seen me at my worst, when I’ve not been able to stop crying or to get out of bed. This, scary as it is, has brought a new honesty and depth to my relationships. I am grateful for this. Many people may find this hard to relate to but I’m hoping that my openness in what I’m struggling with will help at least one person who has similar struggles.

There’s so much more I could write about all that I’ve learnt (and am learning!) to do with pacing myself, pushing my limits, and relying on God, but I think I’ll save that for another time! I’ll leave you with a verse that is constantly in my head: ‘Do not be anxious about anything but in everything through prayer and petition, with thanksgiving, present your requests to God and the peace of God which transcends all understanding will guard your heart and your mind in Christ Jesus.’ (Philippians 4:6-7).

3 comments:

Kt said...

Oh, Liz, you poor thing, I've been diagnosed with fibromyalgia which has similar symptoms and I can't begin to imagine how much harder it must be for you looking after Levi than just coping with work and life.
Praying that God gives you patience with your body, and true rest to restore your health, energy and strength.
Lots of love
Kt
Xx

Unknown said...

Wow Liz! This will help me pray for you better. It's been a while since I last prayed for you and today I thought about you a lot and prayed for you and Matt. Just after I finished praying for you, I saw this blog post. Thank you for being open. I'm so happy to hear that people are helping you. God certainly shows His strength through our weakness.

Anonymous said...

Really interesting reading and some thought provoking elements. I have another friend experiencing similar on the ME having reached her 1yr anniversary and lamenting on what she could do a year ago but doesn't even have the energy to dream of now, and I do observe both of you quietly from a distance thinking crikey I'm really lucky right now and it could drastically change but you can't predict it. How can I make the most of it?

That making the most of it but not getting overly used to it is quite a hard balance. Easier demonstrated by a practical mundain example... We have recently moved house and the back garden is about 4m big if that, but backs onto a huge field(that doesn't belong to us) with barely a house in sight. That field has the potential of becoming a building site and new housing development at any point in time completely out of our control, or it may never. Do I try to block out the field and its openness and not pretend its an extention of my garden because I could loose that at some point. You only miss what you have lost not what you've never had? Or do I make the most of it and thoroughly enjoy being able to do the washing up naked with no-one to see through the kitchen window (not that I do that but...). And then be highly lightly to be caught later. If I knew that field would be there for exactly the next 6 months and then houses on that specific date; I'd make a plan of action to make the most of every minute out in the garden before I couldn't. But in that making the most of it, if not done carefully, would I miss it more when its gone? When it is an unknown of tomorrow, next year or next decade (or never) that the change will happen it is much much harder to work out how best to appreciate without becoming dependant.

It is a very trickey balance and how do we get it right. There is always something we will wish for, and something we would happily reverse back to.