Introduction

Hi Everyone,

Im heather,Im 14 years old and was diagnosed with Chronic Fatigue Syndrome in early march in 2014.

I have recently had to come out of school and receive home schooling as day to day life is always a struggle.Before the diagnosis I was a happy and energetic teenager who enjoyed going out with friends and on day trips out with my family.Since the diagnosis I struggle to keep up with the things I once loved to do. Growing up I was bullied regarding my weight this left me with severe anxiety and I struggled with depression for 6 months in 2012.Following this I then started to get regular panic attacks and as you can imagine this was a difficult thing to cope with at a young age. When I received the diagnosis the first thing I had to do was attempt at explaining to my friends how Chronic Fatigue Syndrome affects me, I first thought of it as energy bars and mine go down faster than everyone else's, a year on and they still don't understand. To help cope with this I have tried to learn to pace myself in day to day life, Im now going back to school and moving up to year 10 this is a daunting experience as I still haven't 'mastered' pacing myself.If anyone has any tips or advice on how to cope with this it would be extremely appreciated!

9 Replies

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  • Hi Heather, my daughter did 50% of school from 12 onwards and has just finished her degree. We struggled for years to get the pacing right for her. Things that helped:-

    Realising that you use up energy in different ways brain (thinking), body (physical stuff) and emotional (anxiety, stress, fear).

    Follow this mantra shamelessly - Don't stand if you can sit; don't sit if you can lie down.

    Getting the school to provide somewhere to lie down during the day. A quick rest during lunch is a life saver. My daughter eventually dropped certain subjects and rested during these.

    Understanding the role of adrenaline, hfme.org/adrenalinesurgetip...

    Understanding what you are entitled to during exams. My daughter took rest breaks (again lying down) and extra time. ayme.org.uk/your-education

    We made a pacing bracelet! A piece of elastic with paper shapes threaded on to it. 10 green and 10 red. When you have been up for your time period tear off a green, when you have rested tear off a red. An unpleasant experience there goes a green because it used emotional energy. It is a good visual reminder for you and can be used to demonstrate to others - my very tired and fed up daughter did hold it up to the teacher and say well I have 2 green left, thats 40 minutes, I can do your lesson or the homework but not both which shall I do - not a recommended approach. As you try to find your level you can add more reds or more greens and vary the amount of activity or rest they represent.

    Hope you find your way

  • Hi Calliepet

    Thanks for the reply.It helps to know your daughter has now got a degree as I always doubt Ill be able to do that once Im older.Thanks for the links I will read through them and Im sure they will be a great help.

  • Sixth form college and uni were much easier for pacing. My daughter spread her A levels over 3 years, 1 a year. Once at uni she made sure she lived 5 minutes from the lecture halls and picked her subjects carefully to make sure she only had one lecture each day. There is a lot we can do (I have ME/CFS too) we just do it slowly!

  • I love Calliepet's post!

    I can add a few bits but they probably aren't as cool. I have met a lot of young people with ME who have finished their degrees even one who got into Oxford despite her illness. I don't know how they did it but Calliepet's approach sure sounds good.

    Also, young people are much more likely to recover from ME than adults - despite the pressures that are on them. It is very difficult to do, but putting yourself first and not over doing it seems to be the most important aspect to recovery no matter how old you are.

    Good luck!

  • Hi Heather, I mentored a teenager in a local high school who had missed alot of school due to C.F.S .School lacked understanding of the condition and felt he was a school refuser due to anxiety. He found having weekly mentoring support useful to share his thoughts and feelings. If school offers this and you can find someone who is willing to try and understand the condition, this might benefit you. Unknowing to school and my student I was diagnosed with C.F.S a few years back so I really 'got it'.

    Have a good look at your new timetable as well and raise any concerns. The student I supported was given 2 hours ITC and 2 hours Business studies back to back, which was 4 hours straight on a computer. This exhausted him. We managed to negociate some breaks away from the computer/screen so he wasn't absolutely spent early on in those

    lessons.

    From personal experience I've found benefits from being very deliberate about my nutrition. I eat good food and regularly throughout the day, and staying well hydrated.

    Hopefully school are fully on board to support you. my student also found being able to come out of the classroom enviroment sometimes and work in inclusion was helpful. He wanted to be in the thick of lessons, but that can be a much more tiring environment with so much more demands on energy. It could be worth seeing if you can mix it up, work in a quieter setting when your more tired, say in the afternoon.

    Above all, don't be afraid to speak up if your finding things too much. When we push too hard with this condition, the set backs can be nasty. Slow and steady.

    Calliepet has made some excellent suggestions.

    I wish you success for year 10 heather and hope you return to good health. Initially I was very ill for around 2 years but I'm able to work full time these days. Life is not without its challenges, pain, fatigue, dizzinness, but I'm able to enjoy life. I still have to pace myself, and found I have to say no to somethings. My sister is an occupational therapist and she teachers 'energy banking. Only so much to go around so pick what you want to use it on. I know when symptoms are really strong it can feel like things are never going to get better, but keep believing it will, look after yourself and hang in there. Jo

  • Hi Heather. I have only realize this CFS prob when i was in my thirties which was diagnose by a homeopathy DR. He inform that they have better cure for this matter but never tried it as it was a bit hassle to juggle the timing between work, meals & medications.

    Didn't know why have to take long noon nap always after school & always lack of energy. This symptom fully erupts when i was some where early thirties; which i was not able to work, full fledged pain & sleepless night for 3 years (nightmare).

    Did tried healing massage, find it good as after the massage feel more relax++. Other than that now, life still moves on, just need to juggle along with the emotion & energy fluctuations when happens especially during rush/ stress period.

    Meals (wholesome food) is very important as without food, emotion goes roller scatted without knowing where goes wrong.

    Don't try to do last minute matters cause it drains CFS person like us. Plan with priority in advance for things which needs longer time to do. Inform those close to you if you need assistance don't keep to yourself as I have realize that we CFS are quite emo sometimes when the symptom is triggered. :)

    Learn to relax (breeze walk, hobbies which don't drain you) or short rest if needed so that we can better pace our daily needs. Never to stretch to the limits as this will accelerate the matter worst.

    You are still young & have better recoveries to have this problem in control.

  • Hi Heather

    It looks to me like you have some very good advice there from Calliepet and jo9007. Personally I didn't develope my ME/CFS until a bit later in life and I don't have any experience with students struggling with the condition but as I say you have been given some good advice here.

    One other thing to think about with regards to the energy banking jo9007 was talking about (also known as pacing or the energy envelope) is that there are many things that sap your energy including negative thoughts. Here is a link to one American website called Phoenix Rising that often has useful information on it. There are quite a few out there but be careful to look for sensible ones that give some sort of professional medical insight.

    phoenixrising.me/living-i-t...

    The above article talks about pacing but has a paragraph towards the bottom about the impact of negative or positive thoughts. It's a very important thing to think about as your attitude makes a huge difference to how you feel. Even as an adult who is supposed to know better I can testify to that. Recently I started getting involved in all sorts of online campaigning thinking that was a positive thing to do and would give me something else to think about. The truth is some of the comments from people on these websites are very negative and even aggressive. Couple that with the fact that the stories themselves are usually sad and distressing as they are from people who need help, and all it has done is upset me and been a huge drain on my energy levels.

    Whilst I can't give you any specific advice with regards to school I can confirm that looking after your energy store and keeping a positive frame of mind are very very important to help you manage this condition, whatever your age.

    Good luck with your studies and make sure you look after yourself first and foremost.

    Margaret :)

  • Hi Heather. Good to hear from you : )

    I also got CFS at a later age so I can only imagine how CFS would have effected my years at school. However, I did return to education as a result of not managing to continue with my job. I know that uni is v different from school but here are some tips. I hope they are somewhat helpful (sorry it's so long!)...

    The first few weeks of a new term can be tough. It can be tempting to try to keep going, past the point of no energy return. A phased return (e.g. mornings only) might be better if you feel that the first couple of weeks is overwhelming. After getting through the first few months of uni (with a couple of false starts), I found that my strength and durability has improved, so don't be disheartened if things wobble a bit at the start.

    Have breakfast in bed (if mum/dad/brother obliges)! I found that this helped pace the mornings, rather than waiting till the last minute to get up and then feeling tired from the morning routine before leaving the house. Have some (healthy) snacks ready in your bag too!

    Get a lift/taxi to school if you can. I get a student allowance for taxis. I know lots of young people get a taxi to school. I hope your council support this.

    Get a mentor/counsellor. I really improved after seeing an excellent counsellor. I had lost a lot of confidence and got easily panicked about things. She boosted my courage to be myself and made me think about the strategies that helped me to work smarter not harder. If you don't like your mentor/counsellor don't be afraid to say. Some just don't understand chronic fatigue. This can be dangerous. Ask to try someone else if you're not happy.

    Have a cut-off point for homework in the evenings so you can relax and get to sleep. I also have a full day off on Sunday's so that I have a whole day when I can relax, not think about studies and do something nice.

    Don't stress if you can't meet a deadline or your work isn't perfect. You are at school. Nobody is going to die. If you're too tired, just leave it. It can be easy to catastrophise - worrying about what will happen if you don't do this or that. Generally things turn out just fine!

    Make sure all your teachers know what's going on and don't make a fuss if you want to leave at an instant and call a taxi home, close your eyes in their lessons so you can concentrate, or don't have your homework ready for a lesson.

    Regarding your friends it can be difficult for others to understand. Some of my friends are in healthcare and they don't get it. People are generally too busy in their own lives to think much about other people's experiences. You have to be your own person (I know this can be hard though.) I liked your analogy of the phone battery! (I do have two close friends and my boyfriend that really get it.)

    Also try to make time for little, low energy things you enjoy! You've gotta keep yourself happy : )

    Best wishes for the start of term. I do hope your energy bars start to go up once you get into the swing of things.

    Lizzie

    PS I met my boyfriend since getting CFS - he is a distance runner! We compare our experiences of fatigue!! I know this would've bothered me massively when I was in year 10 (as it did when I got CFS in my 20s), but you can find someone who is extra loving and caring!

  • St John's wort take it every day does really help with anxiety use a walking stick that helps pace your walking try at breaks and dinner to go somewhere quite were you can rest  dinner have you lunch see if you can get your head down for as hr have a power nap use your phone set alarm so you wake up in time let teachers know so if you get a gap you can rest start to feel tired need a rest tell your tutor tell them you want to rest at school not sent home all time can they arrange a quite area for you to use good luck 

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