We now know how harmful Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) is in 2019. Yet the reluctance to take it down is in my view criminal and against Every Child Matters.
Living with a child with ME/CFS
For the last couple of years Angus has been struggling through constant viral infections, they keep going around in constant circles. Sore throat > painful glands throughout his body > cold sweats > low body temperature >headaches > stomach cramps > willy infection > ear infection > sickness and diarrhoea > repeat. Slowly the fatigue set in, and not in the way I understood fatigue; as fatigue to me was a warm uneasy inability to stay awake or move, for Angus its pain. Predominately it’s his head that hurts, with his tummy going in and out of spasms. When these abate he realises his whole body aches. The symptoms he describes are those you have when you first have flu. We can all remember how awful flu can be, but my little boy at 9 years old has these symptoms all day and most days.
Living with a child with ME/CFS
For the last couple of years Angus has been struggling through constant viral infections, they keep going around in constant circles. Sore throat > painful glands throughout his body > cold sweats > low body temperature >headaches > stomach cramps > willy infection > ear infection > sickness and diarrhoea > repeat. Slowly the fatigue set in, and not in the way I understood fatigue; as fatigue to me was a warm uneasy inability to stay awake or move, for Angus its pain. Predominately it’s his head that hurts, with his tummy going in and out of spasms. When these abate he realises his whole body aches. The symptoms he describes are those you have when you first have flu. We can all remember how awful flu can be, but my little boy at 9 years old has these symptoms all day and most days.
Last year we got him back to 70%
of his former self by August 2014 which took us a year. In early September he
had a slight relapse, I was told to push through. When I questioned this they turned on me, by end of October we had lost 50% of that recovery and
now we are down to where we started from. Since the end of term of winter term
2014, he has been on the loop described above constantly.
Graded exercise and keeping him mentally
strong are the only things we are given to combat the symptoms and the condition
seems to be rampaging through his body none stop now. Trembling as he grips onto
me, he asks for my help to stop the pain, and when it will ever end. I hold and
kiss him, but can give no answers as there are no answers they tell me and no real clinical
trials, or research to give us a way forward.
So it has to be said I’m a
floundering fish. I need to relax and stimulate Angus but never over stimulate.
He must rest, but not for too long! One of the symptoms is insomnia (he can’t
relax to sleep as he is in so much pain) but he needs to sleep to recover. He
needs to eat regularly and keep his day normal, but if he does asleep late does
this mean - I wake him and force feed him, or let him sleep and rest? Fluffy
ducks I can’t tell. But I know this much – I have to stay positive (while I have
very little to be positive about) and determined.
This morning (12 January 2014
7.30am) I went into his room at the normal time and kissed and held him while
he tried his hardest to wake. But I left my angle to slumber and now at 9am I will
again try to wake him by reading for a while, hoping to try and wake him up slowly,
and cross my fingers that I’m doing the right thing. As I wrote the previous sentence
he came in the kitchen to find me, bent double in pain, grey in complexion,
active in mind, foggy of thought, deflated in spirit. My resolve sank deep as my
heart fell, but it’s my job to inflate him with life, and hold him tight and
say it will be all alright?
Now our daily struggle begins. We
are not alone; all around us and the world there are people making the best of
their day, in pain and in anxiety. How will we cope? Thinking of them, knowing
they are there and coping with grit determination, that’s how I intend to cope,
knowing I am not alone and I will grab a smile and send it to you.
Wish us luck, have the best day
you can, and smile at least once for us x
It is now November 2016 and now with the the right advice from a world renowned paediatric Doctor Speight I have learnt how to support my son into a better place and lets hope recovery. Reading back over this post it is tinged with sadness.
The sadness has less to do with the disability that my son lives with constantly now and more to do with the people that perpetuate the cycle of harm.
It is now so apparent that Autoimmunity is at the heart of this disease
Update on Angus 17th October 2019
Well he is not doing very well at all and in the same place I left him in 2016. I am shocked that still autoimmunity is not looked at especially with young children who are newly diagnosed neither is Lymes and still mothers are targeted as the perpetrators of the their child's illness.
There is much nonsense about anxiety and that appals me and I have learnt my lesson about not waking him when he is in recovery from activity. When you feel your body fail you have anxiety that is only human and a safeguard when you look at the damage done by any activity to the patient with ME then it is not hard to understand.
Those that find it hard to understand the human process of coping with a failing body should not be in healthcare.
It is now November 2016 and now with the the right advice from a world renowned paediatric Doctor Speight I have learnt how to support my son into a better place and lets hope recovery. Reading back over this post it is tinged with sadness.
The sadness has less to do with the disability that my son lives with constantly now and more to do with the people that perpetuate the cycle of harm.
It is now so apparent that Autoimmunity is at the heart of this disease
Update on Angus 17th October 2019
Well he is not doing very well at all and in the same place I left him in 2016. I am shocked that still autoimmunity is not looked at especially with young children who are newly diagnosed neither is Lymes and still mothers are targeted as the perpetrators of the their child's illness.
There is much nonsense about anxiety and that appals me and I have learnt my lesson about not waking him when he is in recovery from activity. When you feel your body fail you have anxiety that is only human and a safeguard when you look at the damage done by any activity to the patient with ME then it is not hard to understand.
Those that find it hard to understand the human process of coping with a failing body should not be in healthcare.
