The ups and downs of living with a teen

Is school the place for M.E

I am hosting a guest post from a friend and a parent of a child with ME,ย  quite a powerful post but one that will give an insight into how much our children and those suffering with ME struggle.

Let’s take a proper look at the run up to and preparation for school, school itself and the return

I’m simply going to list activities which can tire out a young person with ME and you can then decide yourself if school is a place where a young person with ME should be.

An activity for an ME sufferer is anything that uses up energy, people with ME have little energy to begin with so many things can be a struggle.

After 4-5 hours sleep, possibly less, possibly broken, the young person starts his/her day on an already minus, and each activity makes them more tired, which in turn causes a worsening of their symptoms, which leads to being more tired and so on…..

Activity:

Getting out of bed

Getting dressed

Getting washed

Chatting to family

Eating breakfast

Getting school stuff ready

Going up and down stairs

(That’s before even leaving the house).

Activity:

Traveling to school

Carrying a bag

Greeting staff

Chatting to friends

Adapting to lighting-can cause headache and sensitivity to eyes

Adapting to noise-can cause headache and disorientation

Adapting to smells-can cause nausea

Getting to class

(That’s all before a lesson).

Activity:

Listening

Concentrating

Writing

Reading

Partaking in class discussions

Focusing

Sitting

Moving from class to class

Break time

Standing around

Queuing

Leaving school

Traveling home

Recalling your day to parents

CRASH

As well as the above the young persons body is probably fighting some common ME symptoms, which both add to and cause fatigue, all of which are invisible and all of which staff will be unaware they are suffering from. The high achiever ME child will push on through causing their body to CRASH later on…..

Symptoms:

Sore throat

Swollen lymph nodes

Cough

Muscle pain

Muscle weakness

Headache

Brain fog

Swollen joints

Allergies

Difficulties focusing-visually

Loss of Temperature control

Nausea

Vertigo

Aphthous ulcers

Rashes

There is also a substantial list of cognitive problems associated with ME which may all come into play whilst learning, needing the young person to concentrate even more, which in turn leads to using more energy and again leads to fatigue, causing a worsening of symptoms leading to a CRASH

These include:

Difficulty with simple calculations.

Word-finding difficulty.

Saying the wrong word.

Difficulty expressing ideas in words.

Stuttering; stammering.

Difficulty following a conversation with background noise present.

Losing your train of thought in the middle of a sentence.

Difficulty sequencing

Difficulty with short and long term memory.

Difficulty understanding what you read.

Transposition (reversal) of numbers, words and/or letters when you speak.

Transposition (reversal) of numbers, words and/or letters when you write.

Difficulty remembering names of objects.

Difficulty remembering people’s names.

Poor judgment.

Difficulty with decision making.

Difficulty following simple written instructions.

Difficulty following simple spoken instructions.

On top of that there are the side effects of any medications they may be taking:

Painkillers.

Thyroid medication.

Steroids.

Cognitive dysfunction medication.

Immune modulators.

Antidepressants.

Antihistamines.

So I put it to you again…

Should a child/young person with ME be made to attend school?

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42 Comments

  1. A difficult subject that Sam covers well. Stressedmum.co.uk is a recommended blog for informative, well researched blogs about topics of interest. Sam uses an excellent range of language, with well spaced paragraphs that make each blog an enjoyable read. Good work stressed mum! Next blog pls! ๐Ÿ™‚

    1. Thank you, it is a difficult subject but one I and many other parents have to struggle with each day with our children x

  2. Thank you for writing this. I feel your pain. My daughter (aged 12) and has just been diagnosed with CFS just beginning the struggle and so is no where near returning to school yet! Are the any forums or places where you could recommended for advice and support as I do far feel we have had v little from our doctors.

    1. Hi Rachel this post was written by a friend and fellow Mum of a child with ME, it is so hard especially at the beginning where you just dont know anything and are left to get on with it basically. I am a member of a great group on Facebook Parents of children with ME,it is a very friendly group and there is so much support and information on there. I hope you come to join us x

    1. It is hard, it is heartbreaking on a daily basis, but we just have to carry on and sadly this has become the normal way of living x

  3. Its a tough one as its balancing all the effects of ME with getting an education and socialising. I remember a girl at secondary school developed ME and she missed out on alot of school especially since there was a lot of stairs and not wheelchair friendly.

    1. It is tough, my Daughter has not been in proper school for over 2 years now ๐Ÿ™ and has lost all her friends very isolating illness x

    1. Everyone who has ME suffers differently, and it really does depend on how much activity your body can stand, it is such a horrible illness and heartbreaking that children have to suffer and lose their childhood and teenage years x

  4. I think people with chronic illnesses should not be made to go to school. Of course, if they so wish, they should be allowed and extra support should be put in place for both the pupil and the teacher. If a family decides to take their child out of school, local councils should be there with extra support ie through homeschooling, paid tuition, online learning. Attending school isn’t the only way to learn and indeed not even the best way.

    1. I have been very lucky with my Daughters school, since she first became ill, even before we knew what was wrong with her and then diagnosis, they have worked really well with us. C has not been in school properly since they broke up for Christmas holidays in 2015 but even now if I have not had contact with school they phone me just to say she has not been forgotten which means a lot. We do have a tutor who comes to our home twice a week to give her tuition, and also if C is well enough we can do the tuition in school. Sadly this is not the case across the country and I have heard so many sad stories of parents having such difficulties and the authorities not understanding.

    1. That must have been so hard for you, I am extremely lucky that our education dept fully support ME, but there are so many other parents that have ongoing battles, so many people do not understand the impact on just getting up and dressed has on someone who suffers with ME

  5. I think it’s important to put your health first above all things. It’s better if we have choices for people who struggle with a chronic illness, like an online program or a flexible schedule where they don’t have to give up their education.

    1. This is very true health comes before anything else, we have been lucky that we have had amazing support from school and now one to one tutor, there are other resources out there but not readily available in all areas which is so wrong x

  6. It must be so hard to even try to live a normal life when you suffer from ME. I didn’t imagine that going to school, which for most of children is a normal day to day activity, can be so hard for someone suffering with ME.

    1. It is very hard, I have lost count of the times my Daughter has broken her heart to me as all she wants is to be normal and go to school and mix with her friends. It is very isolating and heartbreaking to watch x

  7. Thank you for sharing about ME, its not something that I am familiar with but now know more off. Its definitely not an easy condition to live with as as parents, it must be so difficult. I hope more awareness is created on this.

    1. Thank you, I didn’t really know anything about ME before C became ill, and in honesty neither do a lot of professionals, you are left to try to figure a lot of it out on your own, but there are amazing groups out there with people full of knowledge and understanding that make it a little easier x

  8. this is something I have never thought about before, but is such a good point – knowing our limits or our children’s limits is so important, and something like going to school might just be that for some people. thanks for sharing x

    1. Thank you, I think this is where a lot of us parents have failed when our children have become ill, we have done what we thought was the right thing and pushed them into school, when in reality we should have let them rest and let their bodies heal x

    1. Thank you, unfortunately what is something thousands take for granted everyday in going to school, college, work etc, for those suffering it is a huge unachievable thing to do, which a lot of people think is just laziness ๐Ÿ™

  9. This sounds like a tough battle every day! Homeschooling seems like a great alternative where the student can take breaks when needed and not have to deal with so many tiring activities.

    1. Even getting up and dressed is tiring and can send them back to their beds, if they can get out of them at all, it is such a horrible illness and authrorities need to unite and agree that being in school is not always the solution.

  10. Although education is important, having a happy child is more important and there should definitely be better government procedures in place to help parents and children in this situation. It is definitely a subject that needs more awareness because I for one had no idea what ME even was until I googled it.

    1. Education is important but not as important as health, and education can be gained later on in life if needed. There is more awareness needed as unfortunately it is one of the many illnesses that a lot of professionals know nothing about x

  11. I think it should be up to the family to decide and what type of school the child should attend because regular school doesn’t seem like the right place

    1. Regular school is not the right place unless you have very mild symptoms and can manage most of the time, but a lot of departments and schools do not understand this.

    1. C has a tutor two afternoons a week for as long as she can cope with, which is much less stress on her, but she also suffers from isolation, it is very tough but health has to always come first x

  12. I donโ€™t think school is a place for M.E, but then again I think it depends on the severity. C has it severely so itโ€™s perfect that she has a tutor.

    1. School is not the place for those sufering with ME on a normal full time basis, but the children all desperately want to go to school and just be normal, and it is trying to find the balance on what is best health wise. Saying that C can not even cope with her tuition this week as too ill. There should be provision put in across the board for children who are ill that school is not the best place for them and to offer other support.

  13. That is a very thought-provoking question. I agree education is very important but not at the cost of one’s well-being, especially when doing just the daily activities can cause you to drain and crash so easily. In such a scenario, I think online learning should come into more and more practise.

    1. Online learning when they are not set to times and can do it when they are feeling ok, is a much better scenario, even if they can get into school the light and noise sensitivity can cause huge problems x

  14. I haven’t heard of ME yet but after reading this post, I’ll definitely check more information about this. It’s really important to have a great support system. Yes, Health is definitely the first priority.

    1. I did not really know much about it before C became ill, it is a horrible illness and the slightest thing causes a crash x

    1. I did not know what ME was until my Daughter became ill with it, and just how many sufferers there are and many of those are children x

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