Learning to Catch ME/CFS Before They Fall
One of the most important things
I have learnt throughout Angus crash with ME, is learning how to catch him
before ME strikes yet another blow; it is difficult and very frustrating.
Knowing triggers is important,
but it’s like trying to hit a moving target. The symptoms it causes are complex
and immense, as it affects all the functional workings of the body:
flight/fright/stand survival mechanism, immune system, brain, spinal fluid,
respiratory function etc. in other words the whole of you, the way it reacts
and how you behave and think. Nothing
is left untouched, and can be misunderstood.
Listening to the body’s slight
shift and changes is the key I suspect, but again it is very difficult and time
consuming. Being prepared for the ever changing ways as you progress up or down
the functionality scale is a little tricky, and I am beginning to wish I had a
full troop of special ops, trained to kill and a couple of spies wouldn’t go a
miss either. Fluffy socks – I’m only a mother.
The worst thing of all with this
slowly squeezing the life out of you disease, is that as soon as the sufferer
looks, and moves better, they and the people around them think they are ready
to strive forward and recovery is on its way. In reality, hidden within their
cells is a silent assassin.
After a good day or even a week
or two in Angus’s case of being normal – comes the slow stealth of the
assassin, killing the ability to produce energy, then the pain of every muscle
shouting the assassin is coming, every movement a hidden struggle as the
assassin moves through your immune system, opening the doors wide for any
little bug to crawl in and cause havoc. A slight sore throat, a tender ear,
they rest but it’s too late, the assassin has done its work. The scary part is
that you never know what you are going to be left with, as each attach takes a
little more away from you with a longer period of recovery (that part is very
scary).
And what do most people see –
someone who nearly got better, but gave up.
On the outside is my Hyper 9 Year old son, who thinks, and we
believe is invincible, because he looks it. He is strong of will and determined
– life will not hold him back!!! Is he frustrated you bet!!!!
On the inside everything is eroded and corroded by the silent
assassin, wires of pain left bare.
Every assassin leaves a trail and
a signature, Angus’s ME telltale clues of this disease:
v
Slight change in his apatite and taste, even his
favourite treat taste funny
v
Sounds become irritating – unbearable – painful
v
Cold and painful muscles even when he is resting
v
Becomes confused – can’t answer basic questions
v
Temperature changes from high to low
v
Sore throat
v
Painful ears – congested – eardrum bursts
v
Because of the toxins in his body he starts to feel
sick
v
Eyes feel uncomfortable – painful – light sensitive
v
Clothes and cloth feels harsher than they did
That is just the beginning; the
signs can come gradually or are quick to set in. They never come in the same
order and they can go quick or take days to subside. The scary thing is that
some never leave.
Angus is soon going to be 10, he
has learnt to live with chronic pain for the last two, nearly three years, with his ability
to recover on a go slow. What you must ask yourselves HOW WOULD YOU COPE IF IT
WAS YOU???
We don’t want sympathy - there are
a lot of people out there coping with pain and have life shortening illnesses.
What I do need you to understand is that if we push people into recovery with
ME/CFS Fibromyalgia we can do great harm, prolonging their suffering and making it
life long.
Evidence shows that if you take your time, stopping at a sustainable level for a long period before you increase your level of activity (you have no idea how frustrating it is), you can regain some or most of what you have lost.
The question is how do you do that with a hyper nearly ten year old? How do you catch them before they crash to the ground? bouncy castle? Safety net? Or Loving arms?
2017 and my son has been housebound for all this time. Because I found out what this illness needs by myself his symptoms are only brought on when he over does things, a price he often pays to enjoy some life.
Research has moved on but still we fight the powers who want to silence us, why do they want to do that? We can only but guess.
Perhaps soon we will have a test and then some progress for treatment the proof is in the blood:
https://www.healthrising.org/blog/2017/03/08/davis-strategic-approach-chronic-fatigue-syndrome/
2017 and my son has been housebound for all this time. Because I found out what this illness needs by myself his symptoms are only brought on when he over does things, a price he often pays to enjoy some life.
Research has moved on but still we fight the powers who want to silence us, why do they want to do that? We can only but guess.
Perhaps soon we will have a test and then some progress for treatment the proof is in the blood:
https://www.healthrising.org/blog/2017/03/08/davis-strategic-approach-chronic-fatigue-syndrome/
No comments:
Post a Comment