Intensive Training When You Have ME
Even with the intensive training and grit determination Angus never made it to his last day of primary school. He had two nosebleeds and yet another infection.
It would have been nice if the school had accommodated my suggestion that he came to the last 10 minutes of school, but schools have rules and I am too busy fighting every system that is supposed to support my son to argue. Life is not fair and people are busy ticking boxes with no real understanding of the true situation and if there is one lesson my son has truly learnt is that!
My son had been on intensive training for months and months for a big event in his life! Music on the Green in Stowupland! It is a simple village event that most would take for granted and think nothing of just ambling along to and having a pleasant walk around. Simply enjoying playing a few games, talking to friends and would just be part of the rich tapestry of life. For someone with a chronic condition, it takes planning and determination on an epic scale; that only Olympic athletes would understand. It sound grandiose put that way, but it is exactly how it is with ME.
It would have been nice if the school had accommodated my suggestion that he came to the last 10 minutes of school, but schools have rules and I am too busy fighting every system that is supposed to support my son to argue. Life is not fair and people are busy ticking boxes with no real understanding of the true situation and if there is one lesson my son has truly learnt is that!
My son had been on intensive training for months and months for a big event in his life! Music on the Green in Stowupland! It is a simple village event that most would take for granted and think nothing of just ambling along to and having a pleasant walk around. Simply enjoying playing a few games, talking to friends and would just be part of the rich tapestry of life. For someone with a chronic condition, it takes planning and determination on an epic scale; that only Olympic athletes would understand. It sound grandiose put that way, but it is exactly how it is with ME.
First he has to get his body in tiptop condition. He has to eat the
right diet for his gut flora and fauna to keep the bad toxins out of his system.
A lot of food he takes on is because he has to, not because he enjoys eating
them. Inevitably the foods he most enjoys are the ones his body becomes
sensitive to. Eating no longer becomes a simple pleasure, but a war zone.
Next comes muscle stretching, he can’t move in the normal sense because
of the lactic acid his body produces and his unstable and hypermobile joints.
But stretching those tight muscles will help ease the day to day pain; well we
hope, allow him some comfort when he moves - that’s the plan. Each day we gently
go through these small stretches and have to take account of the energy it
requires, even though I’m doing most of the work. It sounds absurd I know, but
it is fast becoming the world we have to live in as one by one the normal
becomes abnormal to his body. Someone with ME produces 20 x the normal lactic
acid, so where a normal person can walk for miles before their muscles become
tired and feel that familiar lactic burn, people with ME will feel it after a
short distance. When they sit to recoup that lactic burn can last for days if
not weeks. The acid does untold damage to their connective tissue. This
connective tissue damage then affects their internal organs and we are only now
beginning to piece it all together.
Car training, because his body has a hard time staying upright, he has
to travel in strange positions to elevate the travel sickness he feels; so far
he has not found a position that elevates his suffering. His heart does strange
palpitations and his rhythm is all over the place and it is the same for his
blood pressure. This work horse of the body is like an out of control stallion
and runs away with any normality.
With true grit and determination to cope with whatever his body throws
at him we made the very short journey to Music on the green. He took control of
his excitement as best he could which is not easy when you are 11 and not often
out and about.
The first part was held at one o’clock and was a track event of
charitable stalls and fairground rides. He won two hammers, a smiley bouncy
ball on a string and beanbag in bucket competition, Whoop Whoop! He then rested
for four hours on his bed to recover his energy, while his heart rate and blood
pressure went back to normal. Then with extreme effort he picked himself up for
the big event!
We got there and his friends came to say hello which cheered him on no
end bless ya all xxx the heavens opened and cold and wet
and bitterly disappointed we went home!!! You can't win everything in life!
We are back in training so that he can attend
the last day of primary school! The pain and training will be hard but he is
one brave fighter!!
After music on the green he came down with two
infections and suffered nose bleeds. Unperturbed we carried on training but a
visit to the doctors has put him back yet again. He has suffered nose bleeds
and being tested yet again for infections. His body is not recovering in any tangible
way at all.
It is one of the hottest days of this year and
instead of his normal resting pulse of around 96 he is back to a resting heartbeat
of 115. So tomorrow we are faced with a dilemma that we face on a day-to-day
basis-that is to say what does he need to do and what state will his body be
left in after.
Does he have to go to school? Well I think to
say goodbye to a class of children who he has no contact with for the last year
is one of those situations that it’s hard to give an answer to, it is the
conundrum that ME always puts you in.
25th July 2017
We have to accepted training does not work, nothing allows his body to sustain energy. A year on and even with our best efforts car travel is very difficult.
I have lost faith in NICE, they are just a front. They refuse to review the guidelines and would rather take the word of research that is both harmful and flawed with vested interests. Even though there are 9000 papers login the damage in the body, there are no random trials so they don't listen? Makes no sense. If it is hard to work out what is happening maybe it is too early for trials? You cannot fix a car if you don't know the problem?
The NHS is just a commercial concern, that turns its back on difficult issues and bullies others.
Angus would love to see his brother off to Australia, but the journey would hold him back so that the beginning of the next school year he will not be ready to have his weekly lesson.
He does not want to make plans for when his brother comes home; because this illness takes all life away from you, disappointment is hard to live with, when it is all you have. But he wants more! More than anything he want to travel to London and go to Harry Potter world with his family. It might as well be outer space to him.
I sit cutting out pictures of a life I once had, for a party we are throwing to wish my eldest son all the best in his placement in Melbourne. I think how to get the best out of the time we have before he leaves. Angus is preparing himself for the fun he has lined up for his brother involving Nurf guns and water bombs and I breath, you have to learn to float with what ever you have, to keep you from sinking.
I have to accept training does not work, and not until we know how the body fails, can we begin to piece back together the energy pack that is need to live.
Until then we are learning to float in a pool of hope and love
25th July 2017
We have to accepted training does not work, nothing allows his body to sustain energy. A year on and even with our best efforts car travel is very difficult.
I have lost faith in NICE, they are just a front. They refuse to review the guidelines and would rather take the word of research that is both harmful and flawed with vested interests. Even though there are 9000 papers login the damage in the body, there are no random trials so they don't listen? Makes no sense. If it is hard to work out what is happening maybe it is too early for trials? You cannot fix a car if you don't know the problem?
The NHS is just a commercial concern, that turns its back on difficult issues and bullies others.
Angus would love to see his brother off to Australia, but the journey would hold him back so that the beginning of the next school year he will not be ready to have his weekly lesson.
He does not want to make plans for when his brother comes home; because this illness takes all life away from you, disappointment is hard to live with, when it is all you have. But he wants more! More than anything he want to travel to London and go to Harry Potter world with his family. It might as well be outer space to him.
I sit cutting out pictures of a life I once had, for a party we are throwing to wish my eldest son all the best in his placement in Melbourne. I think how to get the best out of the time we have before he leaves. Angus is preparing himself for the fun he has lined up for his brother involving Nurf guns and water bombs and I breath, you have to learn to float with what ever you have, to keep you from sinking.
I have to accept training does not work, and not until we know how the body fails, can we begin to piece back together the energy pack that is need to live.
Until then we are learning to float in a pool of hope and love
