fatigue | Sleep is for the Weak

Fatigue Wars Episode IV – A New Hope

Posted by Josie on Nov 13, 2009 in Me | 24 comments

First of all, can I just say… how lovely are all you lot??! The answer is VERY lovely. Very lovely indeed. Thank you so much for all the comments on my last blog post and the many emails and twitterings you have sent my way.

I’m back from the doctors minus two great big vial’s full of blood with that wonderful Tony Hancock sketch running through my head. And since all nine of my pints have been seriously compromised this morning by at least a foot’s worth I am having a sit and a bacon sandwich to make up for it.

I’m feeling much more positive. The doctor rightly pointed out that, given my history, if my Fibromyalgia was relapsing she would expect my pain levels to have increased along with the fatigue and for me to have crawled into her office begging for drugs. And this is a good point as, actually, my pain levels are ok. I did a lot of walking around yesterday and although nearly fell over a couple of times and had to prop my eyelids open so as not to fall asleep in my over-priced under-heated microwave burger at the Blue Planet Aquarium, I did make to the evening without much pain. More importantly I didn’t wake up with ANY which if it had been the Fibro would have been very far from the case, given it’s tendency to make a 20 minute leisurely stroll one day feel like you’ve been run over by an 18 wheeler truck the next.

So we’re testing for low iron and thyroid function and liver function and WI Christmas Tombola and Beatle Drive function all the other usual functions they need to test for in these cases. Results will be back on Tuesday so I’ll keep you posted.

And I am stopping panicking. Chances are this is fixable, just a blip on the radar of my unstoppable plan to write a best seller by the time I’m 30, or, at least, be the first person to achieve world domination through the power of Twitter.

In other news, I made a big decision this week. It is probably not beyond the realms of possibility that my low energy levels are not being helped by the fact that a certain little 16 month old has still been breastfeeding up to 7 or 8 times a day, day and night. Lets face it, he does NOT need this much milk any more, whatever his opinions are on the matter. He eats well and is a big grown up boy now who could probably make pigeon chasing into a successful athletic career, can do all the actions to ’round and round the garden’ AND ‘wind the bobbin up’, and could show you the difference between a train, a tractor, a digger and a car without even blinking. His separation anxiety is significantly better; time away from me now being more treat than trauma. His independence and self-confidence is growing more and more by the day.

It is time. I am ready. Weaning Kai off the good stuff has begun.

I’m not expecting him to stop feeding completely but I am expecting him to substantially cut down the amount he feeds to just 2-3 times in 24 hours And guess what… he’s done it. Nearly every day this week he’s gone from early morning to bedtime with lots of snacks, good meals, distraction and lots of cuddles, and NO distress. Which proves to me that he’s ready too, in a way I hadn’t expected. Kai now has a good breastfeed before bed, one in the night, and then one in the early hours (after which he’ll sometimes go back to sleep). My plan is that eventually we’ll drop the night-time one (when I’m feeling VERY brave and not so tired!) leaving two feeds a day, which is plenty for a boy his age and will still be giving him all the lovely nutrients and immunity boosting benefits that longer-term breastfeeding still offers.

That gives me ALL DAY for my body to do something other than make milk and get to work doing more important things like digesting large quantities of cake and stopping me from falling asleep at random and inappropriate moments.

And the best thing? I look forward to sitting and feeding Kai now. Rather than it be a draining chore that I resent (which is what it had become) with my mind wandering to what I would rather be doing, I sit and I am present and I enjoy the feel of him close to me and breathe in his baby smell and relish every second, re-connecting after a long day of adventures and growing up in which he seems to need me less and less.

I am so proud of him. And so proud of me too. This is a big step for us but the right one.

So there we go. Now, I’m off for a sleep. My bed right now is more alluring than blogging, than twitter, than eating biscuits, and that’s saying something – I must be really tired. I am tired, I’m exhausted in fact. But hopefully only temporarily. And thanks to all of your wonderful supportive words and positive encouragement I am NOT going to let it get me down, whatever this is.

Onwards and upwards. Or sideways and downwards as is more the case for me right now.

Whatever. BA-DOING!! (that was me bouncing back)

Fear

Posted by Josie on Nov 11, 2009 in Me | 32 comments

I am blogging this morning in a desperate attempt to stay awake.

Kai is busy doing things that Kai bear’s do: hiding things in various places to be retrieved later, pushing things round in his beloved new fire engine. He has a small plastic duck in his mouth and my cardigan wrapped around his neck. So normal day for him.

I, however, am not feeling quite so breezy. I keep falling asleep, my limbs feel like lead, I am dizzy and wobbly on my feet. And I am scared, very, very scared.

I don’t think this is low iron, or lack of sleep, or over-exertion. I think this is my FUCKING Fibromyalgia (and yes people with sensitive ears I WILL swear), and the thought of that taking a hold again makes my stomach lurch and my skin go cold in a way I can’t possibly make you understand. The doctor won’t see me till Friday but I know that’s what she’ll say. The pain levels are ok, but this overwhelming fatigue is how it starts. I have been here many, many times. Hopefully this will be a bad couple of weeks, maybe a month and then it will lift. But last time it was years. I thought I had beaten it, I really had.

I cannot go back to being ill again. I can’t. I am grabbing you by the virtual lapels right now and shaking you because you have to listen here. I cannot be that person again.

For six years I was a pale, floppy can’t-do shadow, managing to walk to the end of the road and back on a good day. I won’t tell you about the bad days. My life revolved around wheelchairs, and overwhelming pain that makes labour look like a walk in the park, pacing, and positive thinking and TAKING IT FUCKING EASY.

I don’t want to take it easy. I want to be alive and not a ghost person. I want to DO and get to be the person that I AM – full of energy and enthusiasm, and not some miserable, pathetic not-Josie.

And the real bitch is that everything was going so well. I was feeling happy and settled, I was FINALLY getting going with life and doing things that felt right and that were taking off. I wasn’t depressed or anxious or all the other things that no doubt my doctor and everyone else will assume is respsonsible for the relapse. I was doing great, I really, really was.

It.is.not.fair.

I don’t care if I sound petulant and whiney. I know it could be a lot worse. This illness won’t kill me but my god it kills my life. It kills my plans, my ambition, my potential. And it has done this over and over again my whole life.

I will not let it do it to me again.

I will not put my life on hold again.

You hear me?