Been Too Daunted To Post (part 1)

Well, it’s been about 2 years since I last posted to my blog, and it is simply because every time I decide to write something, I realise just how much has happened in the interim period…and I get cold feet. I know that I probably should have just started writing and seen where it ended, but I just couldn’t get past the “big picture” of what I wanted to cover…

When I last posted on here, I was still in the first trimester of my pregnancy, and not feeling too well. I’m pleased to say that things improved dramatically once I hit my second trimester – which my ME/CFS Specialist had predicted, but which I’d slightly doubted happening. Actually, I’d seriously doubted it, in truth. I’d been bed-bound for such a large proportion of the time during the early days of the pregnancy (and before)- that I just couldn’t imagine a time when I’d be anything less than totally exhausted all the time…

The energy increase and mental “clearing” came so quickly that it was difficult not to anticipate the “crash” that I expected to follow. But it didn’t! It’s hard to explain, except to offer a description of what I could suddenly do: within the space of 3 weeks, I had met with my manager at work, negotiated “medical re-deployment” (changed my role to one that is less physically demanding) and reduced my hours to something more sustainable, and had started in my new job! I spent 3 months gradually increasing my hours from a starting point of 6 hours per week, up to 20 hours per week. And in the 4 months until my maternity leave started, I had only ONE DAY off sick!! Completely unheard of since my ME/CFS started over 4 and a half years ago now…

My pregnancy went by more smoothly than I’d anticipated (is this anticipation of complications in all areas of life, a result of how deeply my illness has pervaded my psyche? I would have to say, probably…). I was regularly seen by a consultant at our local hospital, and he was a truly amazing doctor. He realised that he had limited experience of obstetrics where ME/CFS is a factor, so he sought repeated advice from my GP, my ME/CFS specialist and the head of the anaesthetics department. I saw him every 4 weeks from my second trimester onwards, and he approached all my birthing concerns with such open-minded candour that I could have kissed him at every appointment (I didn’t however, as I didn’t think the “pregnancy hormones” excuse would suffice).

I originally agreed to try for a vaginal birth, with an epidural as soon as I was in established labour. I was extremely worried about whether my energy levels would hold out after the birth, or whether I’d crash completely, never to recover again (my husband accuses me of “catastrophic thinking” at times, and on this occasion he was probably justified). But I was set on having my baby through a normal vaginal delivery. As fate would have it, in the month before I was due to give birth, the TV programme “One Born Every Minute” aired on UK television. It’s a reality show that is filmed in a busy maternity unit, and shows 2-3 births every week. After watching an episode where a woman was in “early labour” (only 2cm dilated with irregular, though painful contractions) for 3 days, my husband turned to me and asked whether I would consider having our son by elective c-section. I had never considered that early labour could last as long as that, and that it would be as draining as it clearly was for the woman we saw on the show. Our contingency plan with the obstetrician had been for an epidural once I was in established labour…but what if I was so exhausted from early labour that I’d be too tired to push, and need a c-section anyway?! So, at our appointment the following week, we highlighted our concerns and asked about the possibility of an elective c-section.

The consultant agreed to the c-section as there was no way to tell which option would be the “right” choice for me, so he was willing to be guided by my wishes. My elective c-section was a wonderful, relaxed experience and went as smoothly as expected. My energy levels never even dipped for a moment, and I was walking around the ward 24 hours later with my beautiful son, Ethan, in my arms.

I enjoyed my maternity leave, going out and about with Ethan 2 or 3 times a week. I coped well with him on my own, and as my energy levels remained so well, I even allowed myself to hope that I might not crash again – that my pregnancy had “cured” me. Despite everything that I know about my condition, I dared to dream. And then that dream was shattered, as so many of my dreams have been shattered by the ME/CFS monster.

I had decided to take only 6 months of maternity leave, so at 5 months old, we started Ethan on some “settling in” sessions at the local nursery. Leaving him there, even for 2 hours, initially, was far tougher on me than on him. He settled beautifully, and was always so content when I arrived to pick him up. But, as any parent knows, when starting at nursery/school for the first time, our child’s immune system comes under attack from every virus known to man. Ethan was no different. And being the sweet child that he is, he willingly shared them all with me. I was constantly sick. Just as I was recovering from one virus, the next one struck me down. I even missed my official start day at work as I was so unwell. The constant barrage of viruses finally resulted in a major relapse of my symptoms, and 12 months later, I’ve still not recovered.

I managed to start back at work, but wasn’t able to do very much when there. My fatigue was unpredictable, and my brain fog was constant. I could probably count the number of days I worked in the first 6 weeks after my maternity leave ended on one hand. And, in early March 2011, I finally listened to my body, and went off on long-term sick leave. I felt so defeated (even cheated) that I’d been so well for so long, only to be jolted back to reality with a bump. No, an earth-shattering, soul-destroying thwack! Oh, reality, how merciless you can be.

Advertisements

2 Responses to “Been Too Daunted To Post (part 1)”

  1. Ah Sam, it breaks my heart to read your blogs. I’ve got such amazing memories of us – that critical time when we were entering the scary and exciting world of teenager! We were cool together! Me, falling asleep, while you were still chatting away and I still have those amazing letter books we exchanged. Yours are so amazing, I’m sure I could have them published… mine …. well, lets not go there! But through everything you’ve written, I see such a strength in you. You’ve not lost your sense of humour and you’ve still got the ‘wow’ factor! You are inspirational…. I’m sure there are some really GROSS days….. but it sounds like you have an amazing hubby and a gorgeous little man in your life! Thinking of you …. with much love ….. Es

    • Esther, it’s amazing to see the different paths our lives have taken – different to what we had hoped and planned for perhaps. But it’s good to know that our paths intersect along the way as well. You are running down your path, I’m being pushed along mine in my wheelchair. Yet we are both moving forever forwards. Isn’t life grand?!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: