Tilly Moments: Learning to Catch ME/CFS Before They Fall One of t...

Tilly Moments: Learning to Catch ME/CFS Before They Fall
One of t...: Learning to Catch ME/CFS Before They Fall One of the most important things I have learnt throughout Angus crash with ME, is learning ho...

A year on and Still learning to Catch ME/CFS Before They Fall No Data released from the PACE trial either

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/

Tilly Moments: Learning to Dance in the Rain

Tilly Moments: Learning to Dance in the Rain: Angus has slowly slipped down, yesterday (2 nd April 2015) was a difficult day (his friend was off to see a film and he was desperate to g...

Learning to Dance in the Rain

Angus has slowly slipped down, yesterday (2^nd April 2015) was a difficult day (his friend were off to see a film and he was desperate to go to; we talked through how we could do this; but he even needed help with getting dressed, so we kept busy with other things. This morning he seems brighter with none of the awful tummy cramps that he suffered most of yesterday. So I’m hopeful that by allowing him to find his own way of recovery, he has got himself back to his low baseline of activity. This baseline causes no extra symptoms and many rest periods of just talking to friends and watching YouTube. He wanders around trying to keep as active as ME/CFS will let him.

Listening to others who have to control activity etc. like people with diabetes and thyroid, they seem to understand their bodies, but can’t necessarily tell you how. This whole controlling, because we know thing is not working for us/Angus, it feels as if we are constantly putting a round peg in a square hole.

It is very hard to make or talk about plans for the future, and therefore almost impossible to stay upbeat and look forward. It is more crushing to make a plan for the future and not be able to set a date to do it.

For example: Just before his last setback we had planed to go and see “Home” a new film that looks a lot of fun and one we would both enjoy. I was all set to book tickets for its first showing. We planed to take a few of his friends and have a pizza afterwards; this was to be his birthday treat/party. In our eyes this was most defiantly achievable. He relapsed and we had to go to the hospital that journey has had a long recovery attached to it. At the moment there is very little chance of us being able to go at any point in the near future.

You learn to cope with the setbacks, but it is very difficult to plan and therefore very hard to look forward. I keep telling myself as long as the “here and now is as comfortable as it can be, that’s the best…. I never do get to the end of that sentence.

Learning to dance in the rain x

Tilly

This year November 2016 we went to see a film for the first time in a year. His tummy cramps are part of the normal over exertion we have learnt to accept and this is slowly being recognised by the research now coming out. Soon there will be more understanding, and perhaps doctors will give our children more support and we won't have to fight so hard for the basic human needs. But for now, I'm just so grateful that with Dr Speight's understanding. His knowledge of ME, gives confidence is us and allows Angus to take control. He is in less pain than he was a year ago. 

Doctor Speight's wisdom has enabled me to allow my son to tell me how to support him. This is a wonderful gift.

It is now summer 2017

Angus is learning to live within his confines of his bodies ability to produce enough energy; cognitively and physically. It is hard to watch and support when you know how much he loves to do. 

The cruellest things are said by the doctors who just cannot accept this is a physical disease/condition, and wont support you or your child. When you sit in a room and they talk about keeping up with the social side of life you want to; well I am not quite sure? Put them in a suit of lead and tell them to dance the night away? take their oxygen away and tell them to keep a conversation going? Do they not understand how cruel it is? A young boy cramped in a cocoon, wanting to burst free?

I look across at his crestfallen face, one in which he thought doctors would be able to have some answers to the paradox world he lives in.

What do I say to this now young man, ill for four yeas with no answers, when he turns and asks 'When will it be over mum? When can I do anything but this" his arms fling out to the four wall of the hospital room, the only outing he will probably be able to have all summer. 

He is in less pain now, but we miss the sea, we miss the cinema, the shopping, coffee out for me and a hot chocolate for him, getting to see friends and taking the dogs for a walk, sand on our toes, we miss people that we will never meet again, the talking and enjoying the freedom of movement, just popping out for fun, ice-cream, the lake, Bury in Bloom, the theatre, the atmosphere, LIFE!

So please the next time you have an ME patient in your room, take a leaf out of Dr Speights book and give a little empathy. 

It is now 2018 and nothing much has changed. We haven’t been to see a film this year and it’s now the 6^th July.

He was 13 this year and we took him for a weekend away so that he may have an experience of riding a quad bike. It took a lot of planning and what I term as training to get him in a fit state to travel, and then partake in the event.

I explain in this video https://youtu.be/DNNeE6rhTm0

After that weekend he stopped talking to his friends. I am not entirely sure why. He heard a conversation when his friends thought he wasn’t listening, where they explained that they only talked to him because their mum’s make them. That he was faking his illness due to being able to go out and riding a quad bike, so he was not ill.

I would like to say this is just children talking, but sadly it is how society is made to think. If you are sick you have to show it either with the treatment you are having or being in hospital.  Chronic long-term conditions never get the publicity, they are hidden and used as a pawn in the game of politics. The undeserving sick is the way my son is seen.

Most Social Workers, Attendance Officers and teachers are there to stop the bullying, but when it comes to hidden illnesses; where you don’t die, they are just as bad. They are now actively looking for Fabricating and Inducing Illness, though there is no evidence to support that every mother with a child who has a complex illness suffers from FII. No records of wrong accusations are kept by anyone and no support given, and records wiped of the falsehoods. Who cares as long as it is not you right? No smoke without fire. Reading some court reports the lack of understanding is sickening. Some senior judges have questioned the increase. However they can only act on information they are given by the research and the medical profession.

 So, when I was questioned about this birthday event that also celebrated our 25^th wedding anniversary, I was not surprised. The fact that my son works harder than anyone just to sit up and take part in a conversation, is dismissed out of hand. Neither is his condition understood due to politics and empire building.

Foster homes are littered with children like my son, as Fabricating and Inducing Illness becomes big business and another empire to belittle the battles having a child with any form of illness, chronic condition or disability, and no one knows, because the mothers like me and their families are not heard or believed. We are silenced by constraints put on us by Governments with no accountability of wrong doing, we are easy targets. Taking away from us is lightening the burden on society?

This is not a new problem, I have met mothers who have been under this pressure for decades and as they become older, they worry about their now adult children becoming victim of the political landscape. Those who strive to make Metal Illness untreatable and unresearched unless it is in their field, makes every illness a mental priority with no support, just blame and guilt changing people’s reality through differing disorders, that a logically approach would spell out the human condition and difference.

How is it that in the year 2018 we are going back to Tarot Card reading as a way to diagnose conditions. Mix this with science, to make it believable and sell it to the public as a treatment and then only offer that treatment if you pay privately. These types of trials and treatments have been ripped apart for decades. Why then are they still around, I can think of 101 reasons none of which are ethical.

We read books and watch films in the comfort that they are nonfiction, but very often those books are based on observations and I for one feel very much like the Handmaids Tale

One day at a time - So how was Angus yesterday (31/03/15) one day after the hospital appointment?

So how was Angus yesterday (31/03/15) one day after the hospital appointment?

He was slower and wanted to be left alone. His apatite was not good and his sense of taste and smell effected; he asked me if I used a different butter to cook his pancake with, I even had to show him the pack to reassure him it was the same. He could only manage a quarter and that was visibly forced down and not enjoyed with his normal gusto.

When he went outside (part of his baseline), the wind “hurt”, not surprising as it was gusty and colder than he had expected. So I told him to wrap up warm to get his body temp back, and not to worry about going out and brush the dogs instead. His brother surfaced and he played on his game instead. Tink and Amber were devastated and were not impressed with my best efforts at appeasement.

Periodically he wanted to throw the American football around to practice his throwing and catching skills, and I must say we are both improving – though my skills as a thrower need to be perfected; I hit him in the mouth and on his bad and very naughty baby tooth that is hanging in on in there, stubbornly and at a jaunty angle.

I had no choice but to leave my two boys to have fun, it would have been – over anxious, I thought to try to stop them when Angus looked and felt OK. After all he had gone to the hospital like I asked, payback was to let him have fun, and there can be no better reward, or way to recover.

Cramp set in at bath time – which was handy as one warm and soothing bath and wrapping his legs to keep them warm as he went to sleep helped. Sleep was hard to fall into and he said this is when he worries. After an hour or so he did fall asleep and even now he is still slumbering. The time is 9am and his normal waking time is 8.30am.

My anxiety is on a typical mother level, accomplishing the jobs before the children wake so that I may enjoy being with them. My sadness level high, I would love to get out of the house for a whole day.

Deepest joy, although Angus has the sniffles, his colour is in the “pink spectrum”, perhaps by this afternoon (his best time of day) he will be up for a Pizza Hut, fingers crossed everyone x

By the time I had hung out the washing, tidied Angus’s bedroom it is now 9.45 he is happily dressed (without being asked) and talking to his friend.

With much joy

Tilly x