Intensive Training When You Have ME

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.

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

Sloe Gin is Rather Good

Finally Margret and I got together to sample her Sloe Gin, unfortunately the parsnips and beetroot crisps took a tumble. I had frozen the beetroot out of Margret’s garden and the water content made it difficult to get them to crisp up. Well in my defence I could’ve made a better job of it if I hadn’t been doing the school uniform wash, preparing the evening meal and a few odd jobs in the office. I have decided multi tasking is not my forte!! Will give this up for the New Year! I sit here wondering with a big smile on my face how that will work and I expect as you read this you’re smiling because you know it won’t.

Kevin will say from time to time if you just concentrated on one thing at a time you would get the job done quicker and better! I wish I had that simple luxury, I will retort. We have special facial expressions for this particular interchange of words and known facts. My face holds the thought “State the obvious” his is “Silly woman”; he would deny this but I can read faces.

Though his view on this multi tasking lark changes when it is him needing something done while I’m in the midst of the fray of family life, trying to be a master of something while tackling a multitude of skills. He has this pitting and pleading look and a hesitant question lingering on his lips that I find amusing. I always think at this point he should give me credit for the situation that is motherhood and never state the obvious. I make him wait until he almost asks (Kevin never asks for anything) and does this goading dance that shimmies with my emotions. It’s painful to watch so I relent. I can almost read his mind he would also deny this!

So after the fluster, I finally make it to Margret’s. My redeeming gift of fresh Figs poached in port went well with the Sloe gin. We talked and laughed our way through the history of womanhood and life as it was in our lifetime and what it has become, laughing as we always do. There is nothing finer than spending time in good company.

Now I woke up the morning after, no not with a headache, we only sipped a glass OK maybe two and I sit here and think to myself my dad makes Sloe Gin. He talks to me about it and has offered me a glass on the odd occasion but I have always refused saying ‘I don’t like Gin dad’ he will always shrug his shoulders ‘fair enough’ he would say. But I must say I feel he has let me down in my education of village life! Education is sometime hard to impart but you should never give up on trying! I do think he could have tried a little harder to educate me on the finer points of Sloe Gin making.

I would like to take up the revival of Sloe Gin making after all it is part of my heritage and the taste is refined so worth the effort but as you have to painstakingly prick every Sloe Berry I’m not sure I could fit this in without multi tasking in triple duplicate. I am wondering though how many bottles dad has managed to make this year, perhaps I will give him a call!

While writing this I have unloaded and loaded the dishwasher and washing machine, folded the clothes and taken a load off the clothes airier and put them in the dryer while trying to fix the wii. I have come to the conclusion kev is right, perhaps I should just concentrate on one task and perhaps my writing would improve, what do you think?