Wednesday, 31 July 2013

Insomnia, Isn't it just a bitch.

I led in bed tonight unable to sleep, tossing and turning a million and one thoughts running through my head until finally, I fell asleep. Only to wake less than an hour later screaming from a horrible nightmare. Now the whole process starts again.

The one thing I did realise, somewhere between waking up and giving up, is that its been a while, a very long while sine I led here with my mind racing unable to sleep and I haven't missed it, not even one bit. Very recently my life has consisted of doing not much at all. Barely functioning during the day. Doing the bare minimum just to get through till bed time, grateful for the hot weather as its been too hot to need to get the girls dressed, one job off my list of things I need to accomplish during the day. Leaving the house just twice a week, once to see my therapist and once more to take big girl to dance class. Every day praying the girls nap together, just for an hour or 2's respite, just so I can fall asleep too. Crashing out every chance I get, early nights and late mornings, napping when the girls do and dozing in between. Its not been fun for me or the girls.

Walking up a normal flight of stairs had become a 10 minute task, out of breath, dizzy and close to fainting by the time I reached the top and needing to sit down. Surely this isn't normal. I'm 25 years old, I used to be fit and healthy, I used to be able to run 10k with out batting an eyelid. This time last year I was going to the gym 3+ times a week. OK I wasn't running 10k, I was lucky if I made 2! But I could walk up a flight of stairs without feeling like an 90 year old.

In desperation I went to the doctor and pleaded for a full blood count. I must be desperate if I was begging for them to stick a needle in my arm! Hoping against all hope that there was something that wasn't right. Hoping there was something that was treatable, I was spiralling into an abyss of Chronic Fatigue and I just didn't know how to get out of it.

I phoned to get the results and was crushed when the receptionist informed me they had all come back normal. As she went to check with a colleague (it was a new system and she was unsure of how to use it) silent tears fell down my face. I prayed with everything I had, I just cant go on like this. Its not fair on my girls. Please just let there be something. For them if not for me, they deserve so much more than this.

She came back with a glimmer of hope, 3 of the results hadn't come back yet, it wasn't much but it was all I had to cling on to. The following day I spoke with a doctor, who informed me my Thiamine levels were low. Dangerously low. So low in fact he was unsure how I was even functioning. For a moment I was in shock, I'd been hoping for this news but as it came I was completely unprepared for it. Luckily my brain kicked in and I was able to ask questions, what does this mean? what can I do about it?

He started to tell me about Folic Acid Deficiency Anaemia, he said the symptoms can mimic those of CFS/ME and sometimes patients get misdiagnosed. Stop. Wait. Did he just say what I thought he said? I've had blood tests before though, surely I've had this one... haven't I? 

Completely in shock from what I was hearing, I managed to stammer out What were my Thiamine levels last time? He checked the system, he left the room to check my paper notes that weren't yet on the system. He came back and told me he couldn't find a record of a previous Thiamine result. He said it was odd, it was a basic test, but it looked like it had been overlooked. He couldn't be sure though, my records have moved surgeries many times and sometimes things can get lost.

So here I am a week later unable to sleep, over analysing every single little thing I have done this week, I've managed more in 2 days than I've managed in a whole week! I went for a walk yesterday, it might be small to some, it was only 10 minutes. But it was 10 minutes after I got home from a therapy appointment. It was 10 minutes of walking without stopping to sit down and without falling asleep when we got home. It was great to watch the girls running, chasing each other playing together. I've never managed that by myself before. When we got home we made pizzas together from scratch! I watched my girls sprinkling toppings on their pizzas and for the first time ever I felt normal. I felt like I wasn't pushing myself just to make sure they wouldn't remember their childhood with me led on the sofa. For the first time ever I felt like the mum I want to be.

As I try and sleep tonight, a million and one questions are racing through my head. Is it coincidence? Is it the drugs? Can it work this quickly? Is this just a placebo? Am I going to pay for this moment of normality? I cant help but to hope and to pray, this is the result I've been waiting for. 

Its no quick fix, its going to take at least 4 months for my levels to get anywhere near normal, and at least 6 months to get rid of any muscle fatigue from not doing anything. I feel this is going to be a very very long 6 months full of waiting, wondering, hoping and praying. 

Could this be what I've been waiting for?

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