Lazy [insert sweary word here] disease

I was talking to someone yesterday who's Mum has CFS and it struck me how people with Chronic Fatigue Syndorme often have to fight just to have their condition recognised, acknowledged and understood. Even GPs lack understanding, often misdiagnose or underestimate the illness. I have sat in doctor's offices before and been asked if I really needed the wheelchair, or why I wasn't getting better. Friend's have asked if I wanted to get well, if I was trying. I wonder how many people answer "Actually, you're right, I'm just damn lazy - if I just tried a bit harder, I'm sure I'd be pain free, healthy and active in no time at all! "

I don't know anyone that would. I can also confidently say that I don't know a single person with ME who  is lazy. Not one. And here's why:

Yesterday I did a three hour shift at work. That might not sound a lot, and to most it isn't and would only make up a small part of their activity for the day. But for me, I was exhausted before I even got there. I woke up feeling sick and shaking, unsure if I was even going to be able to get there. All the adrenaline, stress and worry from starting a new job and wondering if my health was going to cope flared up my symptoms before I even left the house. But I went. And I managed over an hour doing the busiest job in the shop, on one of the busiest days of the year while I was still trying to get my head around what was actually going on. And then I felt awful. Really awful. Shaky, legs felt like they were going to collapse and I knew that if I kept going I could really do myself some damage. I also knew that I had a baby boy at home that was going to need me all this week while Daddy is at work and I coudln't afford to be reckless with my health.

But I still didn't give up. I still didn't go home. I went and spoke to my manager (who was one of the best I have experienced in dealing with health issues at work) and said I was struggling and we agreed a plan of action. I was to do a quieter job for the rest of the shift and next week I will be trained on the tills where I can sit down and don't have to run around.

I finished my shift. I came home exhausted and sore but happy. And I still managed to bath my Son with Ben, I still managed to feed him and settle him to sleep (Ben took a turn too!) and do the night feeds (which are getting less frequent and quicker! SO grateful for that!). And today I will battle with my desire to clean the kitchen, tackle the pile of washing and hoover and tidy the house. I won't do those things, I need to fight not to do those things, because for the whole day Isaac relies solely on me. I am exhausted, my legs are achy and dragging on the floor, I've had a wicked headache this morning, throat is sore and glands up a bit. I feel like I could crawl up in a ball and sleep. But I won't, I'll rest when I can and I'll do what needs to be done to get through the day.

I will suffer more, fight harder and use up more energy than any healthy person does in any given day. And at the end of it, I'll have less to show for it but it'll be worth more. And I'll keep on doing that, I'll keep on stepping out of my comfort zone, resting when I don't want to, giving up the things I want for the things I need. I'm going to keep fighting to make the best life I can with what I have because the alternative is completely unacceptable.



PS I just want to make it clear that it has taken over seven years of doing this, of fighting and learning and struggling to get to this point. At times, my daily limits of activity would have been to get up and dressed. There are times when I needed help to do even that.

Our Breastfeeding Journey

"When you go to breastfeeding classes they tell you it should be comfortable and pleasant. Not painful. They don't tell you its exhausting. They don't tell you that for the first few weeks its bloody sore. They don't tell you how hard it is.

Maybe that's some attempt at getting women to breastfeed. But I think it must just decrease the percentage that stick at it. It was such a shock to the system.

Every time Isaac gets weighed (and he has a fabulous weight gain curve) people say that I must be so proud thinking that I've done that all on my own. That's not how it feels. I'm happy he's healthy, and I think how well he's done. If he wasn't gaining weight properly, I'd feel it was my fault. I'd beat myself up. If I put him on formula, I'd feel incredibly guilty. But I never feel like I've done well.

Maybe that's one of the reasons I struggle with breastfeeding, one of the reasons I don't enjoy it as much as I want to. Maybe that's why I mostly just feel negatively about it: exhausted, frustrated, exhausted. Did I mention exhausted? Emotionally too, I feel it grinding me down. I never let myself feel good about it. To tell myself well done would feel like saying to women who haven't managed that their not good enough. That they didn't do well enough.

Maybe the 2 aren't connected. Maybe they are. Why can't I enjoy this? There are things I like about it. Things I love about feeding Isaac. And I'm the only one who will ever get to do it. Its pretty special, and a precious time, and maybe if I stopped stressing about it, stopped worrying if I'll have to put him on formula, stopped thinking about what I should be doing, maybe I'd let myself actually enjoy it.

Or maybe I just don't like it.

If that's the case, is it ok?"

This is a diary entry I wrote a few months ago. Maybe some of you have heard me say I don't feel like I enjoy feeding my baby as much as other Mum's do, and this was true for the first 5 months of Isaac's life. Perhaps those less stubborn would have given up long before. I certainly thought and talked about giving up a lot! I didn't nurse Isaac because I wanted to or because I enjoyed it but because it was best for him. On autopilot I dutifully whipped my boobs out every 3 hours, morning and night (or more frequently!) Because I love my baby and want what's best for him. Other Mum's would say how much they enjoy feeding their babies and I would just want to cry. I had a few moments where he would feed without fussing or being rough, moments where he would suck contented at my breast and my heart would swell with love and affection. Really precious moments, but they were far and few between.

Notice I'm saying were. This last month I have been really starting to enjoy feeding Isaac. Those moments are coming more frequently, daily, almost! He looks into my eyes when he's feeding now and I can't describe the love I feel for him and the bond we're cementing. He sometimes reaches up and plays with my hair or my face, (at times not very gently!) And its almost like him telling me he loves me. He's still rough or fussy occasionally, but not as often, and the rough times are being replaced gradually with the wonderful times and finally, finally I can say I'm proud of myself. At last I enjoy feeding my baby, at last I can say well done me, at last I'm so glad I kept going.

I don't know why we struggled so much but it almost doesn't matter anymore. I feel we have arrived, even if it took 6 months of grit and determination, we are finally here. And I love it.
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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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