As many of you are Carers for your teenage daughters or sons, I thought it might be of interest to copy you on my recent correspondence with a doting mother as it may cover some useful pointers re ME in the young.
18/5/14 – Mum (F)
I have been directed to your site by Dr. John at the XXX Hospital, London and we’ve purchased our first Vegepa tabs which my daughter has just started taking and we have all fingers and toes crossed for the success of them!
Clearly you are an incredible woman who has been through a lot to help her kid and Dr John thought it might be helpful if I could talk to you as my daughter is 15 and a half years old, an A star student and she, as indeed we all, are struggling to come to terms with this confusing and life affecting condition.
She was diagnosed about 3 months ago, so we are at the beginning of this worrying journey and very much hope it won’t be a long one.
If you have the time it would be great to hear what advice you might have to share, as we feel very isolated at the moment.
Thanks very very much.
All the best
19/5/14 – My reply
You’re lucky in that the school holidays are soon upon us and, though you don’t say whether your daughter is still attending school or not, this will give her a chance to rest, rest and rest (boring and frustrating as it is!).
There’s no point whatsoever, stressing about school, missed exams, coursework, peer advancement, etc etc., etc and making the ME worse. If she’s only just hanging on by her fingernails and suffering in the meantime with worrying and trying to keep up, then the best advice I can give you is to put school aside for the time being. I know that’s REALLY horrible to hear, absolutely dreadful to accept but it’s the only way to beat ME.
Throw dates, school term times and days of the week, out of the window – they are meaningless with ME. Fight the illness not by forcing your daughter to try and keep up with others around her and the norm and in so doing therefore letting ME win. Fight it by taking control of your health, by promoting rest and as stress-free an existence as possible, and in this way you’ll see results.
I don’t know if you’ve read all of my website, the FAQs included, but the ME Association has a lot of interesting and helpful advice too. www.meassociation.org.uk/
I could bombard you now with masses of information about ME but the chances are you’ll find out what you need to know by experience.
There is one other piece of advice I can give you which is to get an appointment with Dr. William Weir in Harley Street. He’s not free but he does talk a great deal of sense, he’ll see your daughter as a whole person, he will listen, he will be very helpful with writing letters to school, benefits, etc., etc.
10 Harley Street, London, W1G 9PF. 020 7467 8478
I wish you all the very best, you’re all affected by this and the wider family too.
It’s a painful, distressing, frustrating journey with advances and relapses along the way. What I’ve outlined above will help you keep the journey as level and calm as is possible instead of full of hills to climb up and potholes to climb out of.
20/5/14 – Mum
Thanks so much for your answer, I shall re read and digest as there seems to be soo much info to take on board. . My daughter is now watching tv having not slept for 34 hours…the sleep deprecation is so vile.
Thank you again
20/5/14 – My reply
Ok, that I can help you with!
Get your GP to prescribe Amitriptyline. My daughter who was 16 when she got ME, was average build and took 10 mg per night. You have to play around with the dose and the hour you take it. She took it at 6pm and was asleep (a miracle!!!) by 10 and woke at 10 the next day.
Far more acceptable than living opposite hours to the rest of the family and than that horrendous incapability of sleeping at all!!
Horrible memories of those hours spent soothing her to sleep without success whilst battling to stay awake myself.
The ME body’s time clock is topsy turvy (as well as overly light sensitive, deafened by too many different noises at once eg rowdy places, supermarkets, etc etc. (too much overload of information for the ME brain to compute).
Amitriptyline is an anti-depressant BUT FOR THE CONDITION OF ME, IT IS NOT USED FOR THAT PURPOSE!!! It’s given in a far, far smaller dose than usual and just relaxes the mind sufficiently to enable sleep.
DON’T THINK FOR ONE MOMENT THAT ME IS “ALL IN THE MIND” !!!
When your daughter is able to fall sleep (hopefully in a few weeks of the Amitriptyline, the Vegepa will encourage her sleep to be less fitful, with fewer hallucinations and therefore far, far more refreshing and nourishing.
Ask any questions you want. It’s better than my giving you information up to the eyeballs which you won’t be able to take in.
I had no one at the time and an evil GP and it was back in 1997 when very little info was around.
I kept a daily diary for the first few years, which is in my loft, but I’ll never be able to look at it again for as long as I live. Too horrific!
But you’re getting help and advice early on, you’ve had a diagnosis already, you’ve discovered Vegepa early on and you’ve got me so it most certainly won’t be anywhere near such an awful journey.
Once you can address the sleep pattern and soothe the brain into relaxing enough to allow blissful sleep, the days will improve for all of you.
Let me know PLEASE how you get on with this fairly straightforward aspect of ME.
PS My daughter still takes her 10 mg per night even though she’s fully recovered – that makes 17 years so far, so don’t be afraid of the “drug” aspect. It’s the only one she’ll be taking hopefully as we want her body to be as natural as possible. With the exception of painkillers for her periods if that’s relevant.
Another thing is for you to cut back on her sugar intake (despite the cravings she may have and the obvious comfort which unrefined, sugary foods bring us all!). Sugar often upsets the ME gut and can produce Thrush and/or Candida – added complications which we certainly want to avoid!
Enough for now!
20/5/19 – Mum
Aren’t you a joy! Thank you so much, you’ve made my eyes well up!!! My daughter is really rather lovely, and so uncomplaining.
I just can’t imagine going through this when half the world thought it was fake, as you say, it must have been terrible. Almost enough to tip you over, but thankfully you are here.
How lovely we are in touch.
25/5/14 – Mum
Just to let you know that our daughter made it into school 3 times this week (reduced days of course as we are learning to ‘keep some in reserve’) and though she didn’t have a good night on Friday, she rallied and we went for early supper on Saturday night and she has rested this morning but now is helping her dad put together an Ikea ‘horror’ and is her sunny, lovely self.
Trying to keep in mind the one step forward two back, but can’t help but be thrilled today and wonder, wonder if the Vegepa is already kicking in.
Wouldn’t it be great.
Wonderful to hear your joy!
Don’t be too exuberant though or you might be disappointed!
Remember that ME strikes 2 days after an activity, not on the following day.
Stop while she’s feeling good not when she’s running on empty like you or I would most likely do.
Save up some cash reserves in the bank so that there’s just a bit to play with!
I don’t mean to rain on your parade but I do want to shield you from those horrible downs.
Keep letting me know and way to go G!!
23/6/14 – Mum
Hi thanks for getting in touch. The sleeping pattern does seem to be better overall, with some bad patches. She did some block exams last week and saw a friend over the weekend.
Thank you for the reminder of not over doing it as I am afraid that she did over do it on Sunday … which has the effect of winding up her system so that no matter how tired she feels she can’t go to sleep. We need to get better at this …. Its a hard one as she was laughing and having a go at badminton in the garden of friends on Sunday and just for ten mins you can pretend all is well, but we really need to keep it to 10 mins .
Our daughter seems to rally when there is something nice to do and is great at ‘pulling it out of the bag’ – she hates the embarrassment of it all, (so school friends don’t understand) but pays for it later….
Still on the good old Vegepa and seeing a new CFS specialist who was recommended by AYME early July, and hopeful of getting some therapy as G is unable to talk about her condition or the knock-on effect with school, friends life without getting very upset and angry.
Thanks for your help and concern.
Best of everything to you
23/6/14 – My reply
All of this sad story is so typical, which doesn’t make you feel any better about it, I know.
It was exactly the same with my daughter. In fact, I’d say the very worst part of ME is that you lose school friends, and family too, who don’t understand and this is so very hurtful and bad for ME in that it fills you with negativity which causes even more stress.
To ease the embarrassment and unwillingness to actually verbalise my daughter’s fatigue, we invented a set of 3 cards, one green, one yellow, and one red. They acted as her traffic lights, a polite reminder or signal that she was getting tired and would have to wind up the conversation, or whatever, very soon, without the need of feeling rude.
It IS trial and error and the hard part is learning that, it’s much better to stop BEFORE you get tired, thus avoiding a relapse, than to continue, getting the most pleasure you can from whatever you’re doing, only to find you pay for it very heavily in a couple of days’ time. Rarely is it the following day – one very telling symptom of ME is “48 hour post-exertional fatigue”.
You must work together on this as you need the help and input from each other to be able to successfully manage a few days at a time.
You didn’t mention if you’d asked your GP to prescribe a very low dose of, eg. Amitriptyline to help regulate G’s sleep patterns? Most people find this a godsend.
Seems you’re getting into the management quite quickly though and, of course, a visit to Dr. Weir, who I mentioned once before, would set you well on your way.
All the support you can get is invaluable, so long as it’s from people who really understand the condition and not just from well-wishers who will come up with well-intentioned but VERY hurtful suggestions like, pull yourself together, get a boyfriend, have a day out with your friends, etc., etc!
Wishing you all the best and I’m here if you ever need me.
25/6/14 – Mum
Thanks Lynne, we are finding our way through this, although we stagger sometimes. I am having coffee with a woman who had ME at the same time as her son….how tough is that. She is a radiologist at the local hospital and involved with an ME charity, so it will be good to talk to her and one of G’s friends looks like she may have it too, so G has someone to talk to now who understands.
Could I ask your experience of the GCSE’s? I know that your daughter achieved incredible results and did them from her bed…..with the benefit of hindsight would she/you have gone down this route or would you have delayed/ dropped GCSE’s.
I realise each case is different but our daughter is determined to do her 10 GCSE’s and I am trying to balance a realistic approach with not letting her feel a failure (she thinks her prospects/life is over if she doesn’t get into a good Uni…nothing we say can deter her).
Her Heath has to come first but I am also aware of her mental health too and don’t want her to sink into depression….
Sorry Lynne, you don’t need our troubles, and I am sure they will lighten and we have such positive medical help who reassure G that she will get better, but the timing of the exams is quite pressing ie she takes them next school year.
I have discovered what an amazing daughter I have in that she can have a crap morning and be just lovely and interesting/ interested by the afternoon with no complaining or misery about her condition in general or just a few hours earlier. so, I am thankful and pretty awestruck by that.
Have a lovely day, the weather may be changing so enjoy it if you can
All the very best of everything
25/6/14 – My reply
I could have written (and probably did!) every single word you’ve said, except way back in 1998 there was noone to talk to nor did we know about Vegepa and were simply finding the answers in the dark by trial and error (lots of errors!)
I also was very against my daughter pushing herself to do the exams but all the wise arguments of this older person fell on deaf ears. She also saw sitting her exams at the same time as her peers as being “normal” and of not letting all her past hard work go to waste.
In hindsight, it made her far worse physically for a very long time afterwards but then, after a couple of years, she was determined to teach herself A Levels so that she could compete and be “normal” again and several years later it was the same when it came to going to Uni.
All of this determination just couldn’t be diverted to “Rest is Best”, however hard I tried!
The onus was on me to make the hundreds of phone calls and arrangements so that she could physically sit them: work being sent from school, a tutor when she was up to it, Special Considerations using a precious diagnosis letter from her GP, Special Arrangements with the Exam Board, an Amanuensis and an Invigilator from the school sitting in her bedroom as she ploughed through the exams in bed, extended exam lengths so she could rest every 20 mins, exams at her optimum time of day, etc, etc etc. I can tell you the details when the time comes.
That’s why it’s so important that you have this letter which you will use again and again for all sorts of things, from exams to air travel to benefits and why I suggest you go to Dr. Weir to get one.
I can’t tell you whether she should do her exams or not at this stage and really, it’s no use what I think as I reckon G will do what she decides and her staunch efforts will make you even prouder of her.
You and I know that it makes not a jot of difference to a career whether our daughters take GCSEs now or at a later date but my daughter has not only caught up but is now doing her PhD at the ripe old age of 32!
But good luck telling that to G!! By all means show her this email if you think it might help.
As for the not complaining bit, it’s no doubt obvious to you but I’ll point it out anyway, there have to be occasions when she can let off steam, cry, rant, scream etc at her situation and the frustration and unfairness of it all. I dropped everything when such occasions occurred and it took all my strength to help her through them, even though they only happened every few months or so.
These “outbursts” will be harrowing for you to watch and may put her health back a few weeks but, without them, she’ll be bottling them up inside and seeing herself as a victim which, in the long term, is not a good thing at all.
My heart goes out to you both, and all the family, as this is not an easy ride but it will, when it’s over, shape G into a strong, patient, philosophical, caring, empathetic and forceful person – all qualities that her peers have not an inkling about!
To be continued……