Something a little more positive

Well, looking back at my last post, it seems I was in quite a dark place when I last wrote.
The last couple of weeks have been filled with busi-ness. The health visitor managed to get round here to see Son no. 2 and 3, and she's applying for some nursery funding for Son no. 3 to go to nursery for 10 hours a week, which will be great if we can get it, but we probably won't.
I've also started my pacing 'treatment' with the ME clinic. It essentially consists of keeping a diary of whether I'm active, resting or asleep, and to start to fit in four half hour 'rest' periods throughout the day. Really easy with a toddler, a baby, a child, a teenager, and a working stressed out husband in the house! I've managed it twice. Yes, that's two half hour sessions, not two days worth! Still, I shall keep plugging away at it.
The supplements seem to be helping me stay awake during the day, so I'm continuing with them.

What was frustrating though was seeing the Neurologist this week - he's giving me an MRI, and asking my GP to put me on some different drugs (yeay - I think!) but is pretty convinced there won't be anything on the MRI, and so in that case, wants to send me to Psychiatry.
I do feel like sending him a full copy of What is ME? What is CFS? highlighting the symptoms I have, (which is everything bar seizures,) and asking him to provide me with equally convincing evidence that 'Fibromyalgia' has a psychiatric cause, but I fear that would be seen as me being belligerent. So, I'm resigned to allowing the professional to do his stuff, and then, perhaps I might attempt to argue that maybe immunology might be the next step before we resort to Psychiatry. But we'll see - I may just try and take Psychiatry on single handedly, because I don't think they'll find what they need there!

The slippery slope.

I can't deny it, I do feel bitter sometimes. What sufferers of any chronic illness or disability go through, on a daily basis, can be hard for anyone. Especially when the services around you are really trying to help you, but can't. I'm lucky enough to have the most wonderful husband in the world, and four amazing children who fill my world with love and laughter. But even I sit and look out of the window and feel an intense bitterness at the situation. At the fact I can't take the children shopping for their new uniform, or to the park, or to the library, or to go on a day trip to London in the holidays, or to the zoo. All those experiences and shared times we've lost and keep on losing while we wait for the NHS to have a space to do more and more tests. While we creep up the waiting list for Social Services to do an assessment. Maybe it's the universe's fault I'm in such a bad mood today - after all, it did give me the tune below this morning.

Not knowing the lyrics, I looked them up. And cried.

"New Born"

Link it to the world
Link it to yourself
Stretch it like a birth squeeze
The love for what you hide
The bitterness inside
Is growing like the new born
When you've seen, seen
Too much, too young, young
Soulless is everywhere

Hopeless time to roam
The distance to your home
Fades away to nowhere
How much are you worth
You can't come down to earth
You're swelling up, you're unstoppable

'cause you've seen, seen
Too much, too young, young
Soulless is everywhere

Destroy the spineless
Show me it's real
Wasting our last chance
To come away
Just break the silence
'cause I'm drifting away
Away from you

Link it to the world
Link it to yourself
Stretch it like it's a birth squeeze
And the love for what you hide
And the bitterness inside
Is growing like the new born

When you've seen, seen
Too much, too young, young
Soulless is everywhere

Destroy the spineless
Show me it's real
Wasting their last chance
To come away
Just break the silence
'cause I'm drifting away
Away from you