asparagusmama (asparagusmama) wrote,

  • Location:
  • Mood:
  • Music:

You won't believe all this part 1...

ME/CFS and health stiff and me generally

I'm exhausted, physically, mentally and emotionally. I'm still at sea over BK's diet and my mind is a fog. I should eat little and often, but I can't in front of BK so my sugar levels and blood pressure keep dropping and I come close to passing out. Change in eating habits and stress of looking after a sick child in pain and afraid has set off my IBS and I'm so much in pain with it that I come close to passing out on the loo - worse than childbirth, seriously (although BK was 4lb 8oz, almost 2k, so waht do I really know about that pain?!). I can't focus a lot of the time, my limbs,shoulders and back burn with muscle and nerve pains. reading for long gives me a headache. So does the TV and PC. In bad phases all EM fields can cause pain, confusion and blurred vision (and considering our estate is right next to two power station with massive electricity pylons coming through the estate about 500 metres away - not good!) and certain forms of wifi in cafes and some peoples homes make me feel as if Ive been poured with lead and have a heavy weight pressing on my head.

Now, I have to get up at 6, help and support a sick child in a lot of pain who has anxiety/coping issues about school anyway due to HFA/AS, to school - she has to be washed, dressed, kept calm, reassured, encouraged over hygiene, etc, meds and food inside her, hair presentable and uniform neat and school bag ready for 8.15 and the taxi. Now she is heavier than me, big boned, solid muscle, almost as tall as me, and my muscles are wasted and frail. but still, I must remain calm even if she punches and hits me. Even though I can see she is in a lot of pain and frightened and confused and it breaks my heart to see her suffer, to know I'm sending her somewhere to suffer more, where she won't feel safe to even express the pain she's in.

Then I must leave at 11.45 to pick her up at 12.30 (remember I don't have a car, I'm 'walking' in a powered wheelchair, Henrietta) and take her swimming. she is stressed out and in pain and needs me to be the strong one but I am so exhausted. Then the swimming pool cafe has installed the type of Wifi that hurts and makes me confused and I must bear it for up to tow hours a day.

After all that we come home and I have to prevent an unhappy, stressed child helping herself to snacks and cook a gluten free, dairy free, fat free, sald free, sugar free meal from scratch when I am ready to collapse. Meanwhile my carer can't cope with all the tidying and sorting in 6-8 hours a week but in the 3 abd a half hours to myself I can't chase Bk's stuff up to the right places and she'll find a barbie pretend phone with her designing box or her pastels and start rocking and hitting her head but I can't do anymore than I am without actually collapsing and ending up bedbound and tehn where would we be...?

If I admit how hard let alone aske for help my neurological illness will not be understood, and we'll be back ot December 2010. And I can't cope with that.

How I wish I had the money to pay for proper help, we need someone organizing, understanding and patient like Monk's Natasha :)
Tags: autism, daughter, disability rights, help, me/cfs, meetings, motherhood, mysterious illness
  • Post a new comment


    Anonymous comments are disabled in this journal

    default userpic

    Your reply will be screened

    Your IP address will be recorded 

  • 1 comment