A life within limits

One of my friends who also has CFS came round the other week to help me out. While she was here she told me that you can't be proud when you have ME. She's totally right, and unfortunately its a lesson I haven't totally learned yet. I am getting a crash course now though, as for the couple of weeks my Chronic Fatigue has been flaring up.

My ME hasn't been this bad since I fell pregnant with Isaac. In fact, I've seen a marked improvement since I fell pregnant, so these past few weeks have been a real shock to the system. Apart from the physical aspect of feeling dizzy, exhausted, shaky weak and sore, its the emotional side of it that really hurts. Sometimes it feels like your not a "proper" person. Like your defective; only able to do half of what healthy people can. Those thoughts weigh especially heavily on a Mum's shoulders. Knowing that I am solely responsible for Isaac's welfare 5 days a week, that he relies on me for everything from food to nappy changes to stimulation so he can grow and learn.

I'm worried that the constant care Isaac needs combined with the lack of decent sleep is preventing me from getting better. I'm worried that I'm going to fall over when I'm carrying him, or just simply that he won't get the care and attention he needs from me. I'm worried.

I've been trying to write this post for a few weeks now and I'm really struggling to put into words how I've been feeling. I don't remember ever feeling like this before. As I think about everything I've been through the last 7 and a half years its sinking in for the first time just how awful its been. Its like the world keeps on turning without you. All but a few of the most loyal friends fade away and you quickly find yourself alone with your suffering - everyday a battle, everyday in pain, everyday consumed by exhaustion, isolation, frustration and depression.

Its hard to describe to someone who's never been through it what its like to need help to walk from the sitting room to the toilet, or to be out of breath, exhausted and need to sit down after a few steps. To struggle to the top of the stairs, your whole body aching for bed, before realising you forgot the water and snack you'll need if you want to get up the next morning. Even without leaving the house, each day takes an incredible amount of planning, negotiating, experience and intuition so that you can walk the fine line between getting everything you need to keep what little health you have without over doing it and risking all the progress you've made so far.

Having said all of that, meant every word and being heartbroken about the life my ME has stolen from me, I also mean it when I say I love my life. I have the most wonderful husband, the best baby boy that has ever existed (I might be biased but its still the truth!) and while I have sacrificed a lot I also have learned and grown a huge amount. Energy is so precious to me and so I know what I want to spend it on, what I want to fight for. I have a wonderful supportive family and I am determined to make the absolute most of what I have.
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