Wednesday, October 19, 2011


Well tablets definitely having an affect as that which had been very light is now rather heavy. Oh good. Thankfully have realised today that the low mood, headaches, fatigue and irritability are related and that maybe it's not a good idea to take my calcium supplement at the same time as my iron one. So many little things to juggle at the same time.

Had a bit of a rubbish morning, went to our local children's centre and as usual was too busy supporting D that I didn't have time to talk to anyone else. Due to the lack of iron I had a huge headache and was feeling really dizzy and irritable anyway, plus M kept me up last night from 12 - 4 and 5 -6 so was quite tired. I don't often get the chance to talk to parent's at these sessions, but I feel they all know me as the mum with the disabled child... Very lonely feeling and very sad as I feel it is impacting on M as the focus is always on D.

M in super whingey mood for a specific snack, so I lost my eye on the ball, hence D getting hungry and having a huge, huge HUGE strop over a tricycle. Of course it had to be at story/singing time when it was nice and quiet. Trying to sort D out I then return to find M scooting around the room on a beanbag, fun but bumping into people potential so felt embarrassed. D is still kicking off so lots of people are staring at me and I felt totally conflicted as to stop M or at least take D some place she won't disturb story time. Thankfully D really wanted to do what I wanted her to do (which had caused the strop) and leaving her to it was the best thing. As it was so public it was all I could do not to cry.

You can guess what happened next - one of the workers asked me how I was and there were tears. As I said to her, when you get given a diagnosis, you become your child's therapist, advocate, social worker, carer, the whole lot. The mothering role get's lost. Of course it's still there, and D wouldn't be doing so well in general if I wasn't mothering but even so. Plus I have to keep M in social situations too. The problem is, people only ever want to know what's happening with D's school status, and I do tell them, and they say, "Oh you're doing magnificently Rachel, you do so well!" This is of course a wonderful thing to say, and appreciated, but quite honestly I'd rather move on from being a mother of a disabled kid who is after all a child like any other. This is going to sound ungrateful, but I also hardly ever get a drink when I go to this group as I'm simply too focussed - I kind of wish the appreciation would include the physical too. But then I'm expecting mind reading, which is unfair.

The kids absolutely love this group, and talk about it for much of the week, so I feel we do have to go regularly. Plus it's good for D to be put in supported but stressful situations and good for M to see the other kids. I'm worried he doesn't play with them much though.

Sick to the stomach with all the bloody school stuff.

Drinking very dark cocoa in an attempt to assimilate iron and cheer up. Writing this has been very therapeutic though, as today was a doddle in comparison to many, many days we have had. I don't mind how things are at all, just maybe I need to acknowledge them a little more.

Tuesday, October 11, 2011


Went to see the gynaecologist today. Quite an interesting experience, the scan showed all fine on the inside apart from chunky ovaries. Nothing happening to them, just they look quite big.

The gynaecologist listened to my 22 year history of hormone horribbleness, agree with me that I may not have had ME in my 30's, just that it was too much trying to have work and deal with my hormones. No reason for why my hormones are so bad, just either that I'm very sensitive to the ones I produce or that I produce masses. I queried conceiving so easily and he suggested that's because I'm lucky. I will agree with that. I agree with the rest too as well. I always tell people I'm too hormonal and maybe I'm actually spot on. It's only been since my periods have come back after Michael and after the coil them getting so much worse on a monthly basis, means I can observe the hormone effects. As these are basically from just before ovulation (day 12) and last until the last day of my period (day 10), I do literally only get 2 days off a month.

He's suggested I take the mini-pill and also that I can take 2 a day if the symptoms come back stronger after a few months as generally happens. He's put me on system so I will be phoned by the clinic in 6 months time to see how I'm getting on.

Happy with the treatment, but can't express how it feels that I could have had a career and been good at what I love. I've never really grieved for the ME years, I've always just got on with it, believing that's the best thing to do. There's never really been anything to grieve, and I guess in very many real ways there still isn't. After all there is no disputing that I took about 5 years out to get better and I did which was great. I've had children too which was never part of my plan, but of course life is much better with them. Got married too, never thought I'd find someone to accept me. Struck gold there.

In my late 20's/early 30's when I started to feel so bloody tired ALL the time I didn't realise the link between my hormones and the way I felt. That link has only become clear later on. It's always been confusing as other women always agree how awful PMS is and they say, but it's only for a couple of days isn't it? It's taken me years and years to realise they probably weren't in the main talking about 2 to 3 weeks of labour like cramps (had these in my 30's pre children too), and mood swings/fatigue a go go for the entire time too. Most women do a get a substantial break each month, it's me that's unusual here. So I can stop beating myself up for feeling so pathetic for not being able to cope with something other women seem to sail through.

So that's me. Quite sad about the loss of career thing, but who know's there's maybe still time to do something once the kids are in school. Really hoping the new treatment will work alongside the coil, after all I've not tried that option before. If not, at least now I'm in the system for the gynaecologist so I will be able to access that quicker. Finger's crossed.

All I need to do now, is work on my sensory issues and on getting D sorted. M is doing just fine, but the more I can get us out the house, the more he will see people which will be good. I may even have enough energy to start contacting my friends again, this has all gone for the last 6 months or so of hormone horribleness. But let's not be rash here ...

Currently indulging in chocolate and tv, but soon am going to turn off the telly and get the kids to the chemist. Life carrying on, one step at a time.

Friday, October 07, 2011

When we lost you,
you were there in perfect sight,
I was probably dressing you, or changing your nappy,
Making your tea, or brushing your hair,
Yet you were lost.

The hardest thing was that we didn't know,
didn't know that you were lost.
Because you were there in front of us
we allowed ourselves to be convinced that you were a difficult child
"They're all like that, with their funny little ways".

We thought all you had to do was change,
grow a thicker skin, learn to adapt.
We didn't know you couldn't,
didn't know that changing you meant losing you.
So we lost you.

Suddenly we realised
we knew we hard to find you.
We took off your uniform, but you were not there
We looked in your eyes, but you were not there,
We held you tight, but you were not there.

So we let you go,
let you go where you needed too,
put up with the scratches and the blood and the screaming,
We held you tight, looked in your eyes, hugged and kissed you lots,
and you were there,
you'd never gone.

Wednesday, October 05, 2011

Thrown and caught by the dancing wind
The leaf shadows flicker and splash on my garden fence,
A painting of a feeling, caught in one second
And blown away the next.

Month by month

Month by month and day by day,
Another label for your needs,
Another barrier for you to climb,
Another perspective.

So many labels in such a short time,
so many diagnostic criteria
but you still manage to laugh, be happy and love,
and loved, loved, LOVED very much too.

Defined but not cut-off
Part of this life, this great big world,
Part of the great going-on beyond
And here, right here, and loved.