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ME/CFS

Discussion in 'Health and wellbeing' started by robyn147, May 30, 2011.

  1. My ex had ME for about 6 years after a bout of glandular fever. She worked too hard and it took a long time to recover. She has recovered - interestingly after she became pregnant! Not sure if that's recommended. She was told so much - cognitive behaviour, graded exercise, it's all in your head. She did pace herself and made herself do things - but also got payback later.
    Another friend of mine had severe ME for 10 years. She was almost bedbound. She did some therapy and is a different person. She runs her own business and leads a full and active social life. It's amazing to see how she has changed.

     
  2. That is reassuring! I certainly won't be going down your ex's route of getting pregnant to recover, but it is good to know that there is light at the end of the tunnel.
    Even though I have known something was wrong for almost two years, the struggle with diagnosis took most of that time. I am only at the beginning of the journey in comparison to many, and just so unsure of what the future holds While this illness is indescriminate in how and who it affects, I think that the pressures of teaching, and the ridiculous sense of guilt many of us feel about putting ourselves and, more specifically, our health, first, can make things worse. It has taken me such a long time to step back and gain some perspective.
    I am determined to beat this thing which means putting me first! This is not going to be easy, I know, but it must be done. I have read many accounts of people changing their lives completely after recovery and continuing to live a life where maintaining good health remains the top priority. I hope that I can learn from this illness to slow things down and re-prioritise properly for the long term.
     
  3. It's been a long time since I had the energy to update this thread. I have now been off work for 5 months and am showing no improvement. I've now been confirmed as having Fibromyalgia in addition to ME/CFS and am awaiting a referral to the pain clinic.
    I am now worrying about how I will cope with school life when and if I get well enough to return to work. At the moment I can not even walk down the street without major pain and suffering for weeks afterwards. I had to ring OH to inform them that I am too ill to make the journey for my recent appointment. As they don't do home visits, they simply cancelled the appointment with the advice that I am to arrange an appointment before I go back to work. Just how long will I be signed off for before ill health capability proceedings are started? Any idea?
    I feel totally cut off from everything - it's sad how quickly people you once considered friends stop calling. It's probably just as well as I have nothing to talk about now that I am practically house-bound.
     
  4. polly.glot

    polly.glot New commenter

    You poor dear - I'm so sorry to hear about your problems. It's a terrible thing, most especially because people just do not understand what is wrong and how awful you are feeling. My daughter was struck down with is at age 13 and spent her teenage years stuck in bed and home-schooled. However, now in her 20s, she swims every day, cycles across London to work and is running the Bath half marathon. She put herself through Uni working 2 jobs and still graduated with honours. The wan, exhausted and depressed girl has long gone. There is an end to it, but I'm afraid that it requires time, patience and understanding. I really never thought I would ever see my girl healthy again, and I thank God every day for her recovery.
     
  5. Torey

    Torey Occasional commenter

    Get a copy of absence proceedings from HR. They are likely to start when there is no likely date for your return. Get union advice if this happens.
     
  6. Hello Hoodedbrowser, I have just seen your November post today and you have my heartfelt sympathy for your situation. I was also a teacher for many years, and left my job because the stress and overload of work had lead to cfs. At the time I didn't know what was wrong with me, and the plan was to leave, recuperate for a term then get a new post nearer home and possibly part-time. In this way I gave up my rights to any sick pay etc, as I just got worse and worse and was diagnosed with cfs a few months later. That was 5 years ago, and I am just beginning to pick up again, although not sufficiently to return to teaching which demands 120% off everybody.
    So I urge you NOT to resign, even though there will be all sorts of pressure put on you once they realise you have a long term condition. Your pension rights will be frozen, and you may never be able to return to work. You need to get your pension years enhanced if posible, your union rep should be able to advise you, and also be your advocate in any negotiating. You will need a sympathetic GP who will help you collect the evidence you need to apply for early retirement or whatever is on offer if you are younger.
    You will probably be sent by your GP to whatever CFS clinic you have in your area; they offer graded exercise therapy (GET) and cognitive behaviour therapy (CBT). Try and have the CBT first, it does help with trying to come to terms with the guilt, depression and isolation that you are now feeling. The GET is useless, trying to make someone with cfs do exercise is such bs, then they treat you as if you don't want to help yourself. But save your energy for the things you have to do at home. I remember having to crawl up the stairs to get to the loo; at the same time as a physio was trying to make me do graded exercise.
    Your former colleagues will disappear from your life quickly, and you find out who your friends really are. This is harsh, but don't waste emotional energy on them, you have survival to consider. Most people don't know how to be with sick people. I found that the friends I did keep, couldn't bear to acknowledge how sick I was and were resolutely jovial and insistent that I looked 'better'. Just try to forgive everybody, it's the only thing to do. You do not have the energy to waste on annoyance or anger, and probably not the memory to hold onto resentment about anything. In time you may see that this will make you a better person and not one of the driven souls that teachers have had to become.
    Try and work out what you can do, and when is the best time to do it. You will forget last week's thoughts so get a fat notebook and put everything in it. When the fear and panic get too much, do something that requires concentration up to a point. I used sudoku puzzles, which made me feel more calm and ordered. At first I couldn't order numbers 1-6, and got the easiest puzzles wrong; now I am able to complete the Sunday Times's 'very hard' one which is a right stinker. The small amount of improvement that I could easily track, day by day, I found very reassuring. Don't bother with crosswords, they need knowledge and therefore memory. But there are lots of things you could try for staying calm, another teacher I know with cfs plays music. She is fortunate to have musical talent and play several instruments, this part of the brain seems to be less affected and the rhythym helps everything else. The rest of us just have to listen to the music, maybe tap something to the beat... then a different area of your brain takes over and the fear is held at bay.
    It doesn't seem possible at the moment that your life will get back on track. You may not yet even have hit rock bottom (sorry). My brief recommendations for survival are:
    • Eat as good a diet as you can afford. Cut out chemicals and junk as far as you can. Cooking is a labour, but chucking unpeeled potatoes & carrots in the oven to roast isn't. Lots of salads ready-washed, and fruit...
    • Enlist help. If you have a partner, they are your best resource if they are the understanding type. Maybe parents, friends... Decide what you need them to do, then be gently specific. They can't read your mind.
    • Sort your finances. Don't give up your sick pay and future pension like I did! Get help to deal with any guff/meetings (union rep or willing friend). Work out where you can cut corners, you'd be surprised how much less you can spend if you have to. Use the notebook!
    • Get your GP onside. You need to visit them from time to time; make a list of things to mention.
    • Careful with drugs. The GP is likely to offer SSRI anti-depressants, amitriptyline for sleep and pain, NSAID painkillers if you have muscle/joint pain; this is protocol but doesn't mean it will help you. You are likely to be extrasensitive to drugs and chemicals. I can post more about drugs if you are interested.
    • Sod the exercise. Just save what little energy you have for functional use. You will know when it is right to start exercising again.
    • Deal with the fear and guilt. Get CBT if you can in your area. Find stuff to read online.
    • Accept that your friends and contacts will change. Keep in contact by email which saves having to talk. Accept the new friendships you may be offered, eg online.
    • Find a fear-quelling activity (music, sudoku, drawing...) Doesn't matter if it is a bit donut to begin with, that's where you are now.
    • Get over being a do-er. You used to be one, you used to have responsibility, a heavy workload etc. Now you don't. It's heartbreaking. But the sooner you can come to terms with the 'new you' and what you can do, the sooner you will get a form of life where you survive. Fighting is useless. CFS gets worse if you fight it.
    • Deal with whatever your problem with sleep might be. If you don't have a problem that's great, but unusual. I needed a softer mattress (memory foam topper) for the joint pains, and a quarter of a tablet of amitriptyline to start with although it made me very groggy. Other things that might help: herbal sleep remedies, melatonin, alcohol (small amounts if you can tolerate it. Many people with cfs can't)
    Phew, I seem to have written a lot here. I do hope you can let me know how you survived Christmas. Best wishes and hang in there.
     
  7. Thank you elephanthawkmoth
    I have now been absent from work for 7 months and still not looking likely to return any time soon - work haven't made any moves to dismiss or encourage resignation as yet, so I am still in receipt of sick pay. I managed Christmas Day but have been paying heavily for it since [​IMG]
    On the plus side I am getting quite a lot of support from the various health services, and my GP is always happy to refer if needed. I have missed the next pain clinic round of therapy and have to wait until May for the next one (I will have some 1-1 sessions with the pain management nurse in the meantime). I am also seeing a physiotherapist to help with mobility, and have been referred to a neurologist for further investigations.
    Getting through the various appointments can be difficult, but I am getting better at resting more when I can.
    I find the whole thing terrifying, having been so healthy, fit and active before this struck. It's about time more effort and money was spent in research for cfs/me. I wouldn't wish this on anyone!
     
  8. Hello Hoodedbrowser. Have a look at the website of Dr Sarah Myhill, if you haven't already. She has been campaigning for years for CFS, and has masses of useful stuff on her site, including a decent explanation of mitochondrial malfunction. <u>www.drmyhill.co.uk</u>
    If you are able to afford them, she details all the supplements you need to take and other useful survival tactics, as well as offering all sorts of professional help. D-ribose is very useful, but you need to take it several times a day and it is expensive.
    Dr Myhill is adamant that graded exercise is damaging for someone with CFS. Don't let them try to make you do it, just do what you can by pottering about. Lifting normal things and walking in your life as best you can, is all you can do for exercise at the moment. Physios will tell you otherwise! But if you do their exercises, you will use up the tiny amount of energy you might have for the day and not be able to do anything else. There is a good explanation of this and how the energy cycle works on the above website.
    You will need to mentally cope with having to probably spent several years in the CFS/FM parallel universe. It is a terrifying place, and often leads to depression. You could get that fat notebook I recommended and write down all the wretched symptoms, and effects, you have. It gives you a benchmark for your future improvement. I had massive sensory overload, seeing the world flat not 3D, and in vivid primary colours; noises were excruciating, smells were intense and overwhelming, I could hardly bear to be touched, my skin was so sensitive...how weird was that? Although I still have glimmers 5 years later, it has mostly got back to normal. But interesting to read how full-on it was at the time.
    Depression is caused by non-acceptance of how things are (and why should we accept it, we are/were the doers and achievers!) and lack of any control over anything. Once you can work out how to control your day, you will feel less terrified and depressed; you are just aiming for an even keel without major crashes. It takes self-control to NOT overdo stuff when you get a little energy. The pacing is all, a little activity, a little rest....if your body says, more rest, do it. Don't let the 'old' you override your survival. When you get better, and you will improve, you will not be the same person.
    You are in that real danger zone right now, where you are still attached to work, they still expect you to come back sometime and you want to, but in your heart you know that's it for teaching. But you don't accept it yet. Maybe you will be a lucky one who does return; but when I asked my CFS consultant what percentage of teachers get to go back to teaching (they get a lot of teachers!) he said, none. Some manage to hang on with part-time hours, if they don't actually leave, but they must be mild cases. My son's 6th-form teacher works P/t with cfs, and last summer most of her group were distraught because she had messed up the coursework workload and marking, and the students were several pieces of coursework down with about 2 days to the last deadline! Thing is with teaching, it's not about you, but about them, the students. Which makes it awful if you make dire mistakes. Mess-ups might matter less in a different kind of work. Your mind cannot cope with all that stuff now. I'm so sorry.
     
  9. Hi
    All your symptoms are similar to the ones I have been battling with for nearly two years, I eventually had a thyroid function blood test and was found to be slightly hypothyroid, I have read that fibromyglia and CFS could have their basis in an underactive thyroid but the medical profession will not prescribe until you hit a certain level - which is frustrating. I went from being a really competent AST to being unable to concentrate and keep a single sentence in my head, I am alot better now but still not where I want to be :(. I am also at 'that age' whilst I havent started the menopause according to my endochronologist as I have the oestrogen levels of a 30 yr old - I believe that is the problem I only feel well when on progesterone which helps balance oestrogen and allows thyroxine to do its job - only then do I feel I can take on the world [​IMG]
    I will be leaving teaching soon as I can not cope with the day to day stuff - I can not keep up with the rushing from one thing to the next yet I know I am not ready for the scrap heap, just a slower pace of life. A lack of support has left me disillusioned, whilst I have not been signed off long term I was referred to OH due to 18 days off over a period of a year although all my time outs including AST time in other schools was listed so it looked really bad. My support - a full timetable and an AST action plan that I will not be able to fulfil!
    Do press your doctor to test your TSH, T4, T3 , and sex hormones and dont be fobbed off with they are in the normal range, ask for the numbers, write them down and research stuff yourself. If you are borderline you could have all the symptoms you have mentioned! Good luck
     
  10. hello Dawson, pleased to meet you, I check in from time to time to try and support other teachers with CFS/FM if I can. Sounds like you are having a **** time. Don't resign like I did, to 'help' my school which had financial problems! It won't be easy, but stay with the system so you can get whatever you are entitled to, you have earned it.
    I was 5 years struggling with this CFS, and was improving before Xmas with quite a decent amount of energy ( not enough to go back to teaching!) but got a cold virus, a bog-standard ****** cold! And now am low again. Apparently remissions can disappear, it's not like a normal illness where you get gradually better.
    Get some CBT if you can. There's usually a waiting list, so sign up now before you think you need it. It will help you deal with the guilt and fear, which means you may be able to avoid the antidepressants. Welcome to the parallel universe.
    It helps to find your comfort activity, I'm not kidding. If you start feeling anxious and panicky, doing something that heads you off really helps. Mine was sudoku. Now I do kenken and kakuro as well. It sounds like being an old-folk, but actually the needs are the same; reassurance, calmness, keep brain going, blot out the panic. Music activity is good. It has to be something where you only think about that, so lots of activities don't work.
    3 months, you are only just beginning your cfs journey, I am sorry. You must consolidate your sick pay/pension arrangements. Believe me, people with Cfs are being kicked off incapacity benefit right now, and expected to apply for jobs or lose benefit. You need to prepare for the long haul.
    Ok, if you need to talk personally email me: elephant.hawkmoth@yahoo.com Good luck
     
  11. Hello, ex advanced skills person! Of course you have been busting it in your professional life, and now it might be best to leave teaching and try to adapt to being a different person. I agree totally about the thyroid thing. I have been taking thyroxine for years, since a year after I had my first baby. The hypothyroidism was definitely set off by the hormone changes of pregnancy, then misdiagnosed for some time.The exhaustion was awful, I could barely get out of bed . I was apparently down to less than half of whatever the measurement of thyroid is.
    I picked up well on the thyroxine, if that is your difficulty then you will too, it takes about 6 weeks to kick in properly. I taught for 17 years after the thyroid diagnosis and medication, it really is one of those conditions that are solvable if not curable. So maybe if that is your 'only' problem, you might not need to leave? Thyroid is one of the things that they test for before a diagnosis of cfs. You will buck up quickly on the thyroid hormone unless there is something else as well.
    I was menopausal when I was wiped out, I know the link is hormonal somehow. I am now through he whole menopause thing and gradually feeling better, but got a cold virus, see my previous post. Very typical of cfs. I really hope you just have hypothyroidism (my version was Hashimoto's) and not CFS because you will be well soon!
    You can email me if you need a chat personally, elephant.hawkmoth@yahoo.com, best wishes
     
  12. thank you 'elephanthawkmoth' for your comments, sorry to hear you are still suffering the efffects of CFS & hypothyroidism I hope you recover from the virus soon. I have a conditional offer to join the LA as an improvement advisor but hanging on for a firm offer subject to acceptable references, medical checks etc. Am getting quite impatient with the 'speed' of the recruitment department. Although I am leaving teaching I will be working closely with a number of schools in my locality including the school I work at ! I am also hoping that the pac of work will be slightly slower and not determined by the never ending bells.
     
  13. Hello again, I'm glad to hear that you are to be an adviser, that's great. Your thyroid problem is only a problem before it is sorted and you'll likely have to take the thyroxine for life. But then you will have a life! Don't allow any HR department to mark you down as unwell once you are taking the medication, because you will be fine once the dose is sorted. It's like taking any other sort of substance that you are short of, once the shortage is addressed it's all fine again.
    I was undiagnosed for a year, and really feeling dire, but back on top within a couple of months on the thyroxine. Not to be confused with CFS, although hypothyroid means horrendous fatigue at first. Good luck with the new job and I hope you get back on top form asap.
     
  14. Hi Thanks for the reply - elephanthawkmoth
    I have had all the blood test and all have come back normal - not my thyroid
    I am seeing the doctor again next Friday and intend to ask to be put on the waiting list for CBT - Anything is worth a try! - the last thing i want / need is to be depressed!
    It is great to read this thread and see what other people are going through.
    Thanks
     
  15. 30 years with cfs in all its forms is pretty horrendous, and you have done amazingly well to hold down any kind of work!
    Just a thought; the sleeplessness, weight gain and depression are symptoms of menopausal stuff, I don't know your age but I'm guessing from your history that it could be. Menopause symptoms on top of cfs aren't great and get all muddled up, but do pass eventually; mine took 4-5 years and then the depression lifted. I've still got the weight to shift though, worse luck. Apparently the average weight gain with cfs is 2 stone, then you get some more at menopause. I wish I had a solution to that one!
    Thanks for your input, you have kept going whenever you could and that's all we can do.

     
  16. Glad the OH wallah was supportive, but they have no axes to grind and can just do their job. Your HT has more of a problem with you off work, I so hope she/he is also supportive. Heads don't have a lot of spare time, so s/he may not have boned up on CFS; you may be able to help your chances by emailing over some info on CFS; here is the most gut wrenching description I have seen from a reputable source, go to the Description on page 4.
    http://www.meactionuk.org.uk/What_is_ME_What_is_CFS.pdf
    If your head reads this s/he just has to be supportive of you.
    The head of my ex-school had a great way of ensuring we never took time off: never paying insurance to cover supply costs. Staff absences were covered by splitting the class amongst all the other classes (large primary, 4 classes per year group) so you knew that if you were off then your colleagues were suffering! So staff always staggered in, even when they most obviously shouldn't have. I know that this can do, can do more, can do even more culture contributed to my CFS. No-one wanted to be the wuss who said no to more and more workload. I see it now, but when you are up to your neck in it all, it's impossible to see.
    For your meeting with the head, you need to agree a phased return if your doctor thinks you are fit enough to try, with an open-ended get-out clause for if you can't cope. the one good thing about returning to work is that your sick-leave starts over again afterwards. If you can't return part-time, you may eventually end up discussing a compromise agreement where you leave for an agreed payoff. It's best to have your union rep or a capable friend with you to help negotiate.
    Good luck!
     
  17. Thanks! At least it gives you a break every now and then - even if it is just to dump you forther down again [​IMG]
    I am seeing GP next week about menopause possibility. I am on depo provera so wouldn't necessarily notice any other symptons (I am mid 40s so it is more than likely).
    I am trying an odd diet at the moment - alternate day diet - to see if it reduces the stress and strains calorie restriction adds to my CFS and general lethargy! I'll let you know (4 days in and I feel good).
    Basically I have made myself a little promise: I shall be lighter and fitter by fifty! My personal <F>F@F challenge (<FAT>FIT@FIFTY)! I have, erm, 3.5 years, to lose 4 stone and walk a 10K or half marathon! A pound a month.... got to be possible!!
    Small goals and no recriminations for any missed. I think that's how I cope!

     
  18. Well that's a 'long-term' goal! Trouble is with a pound a month, is that it's not measurable over a week, or even a month. A pound is not a definite loss because you could be a pound more or less every day, due to water loss or fish-&-chips or almost anything!
    My 'theoretical' goal is 2lb a week, I got all the Christmas excess off quite quickly, presumably it didn't have time to get a grip...but now left with 3 stone+ of longer-term excess which has to go this year. But the cold snap in the East of the Uk has left me, and others, wanting food/hibernation/no dieting. As soon as the temperature lifts a little and the snow melts, I'm back on the eat-sensibly plan which involves:
    Dinner: No olive oil or fats involved in cooking, except 1-cal spray. No pre-prepared food (pies, quiche etc). On the plate: one quarter cooked green veg/one quarter salad veg/one quarter carbs without fat (rice, potatoes etc) and one quarter protein, fish usually. This makes a decent filling plateful.
    Breakfast: porridge ( 2 tablespoons oats, microwaved with 1 tablespoon dried fruit and skimmed milk, then add a spoon of 0%fat natural yogurt)
    Lunch: 4 or 5 rice cakes or similar non-wheat, with low fat cream cheese, tuna etc plus cucumber.
    Snacks: my downfall, usually; pilfering kit-kat chunkies and bags of crisps from stashes meant for the teenage son's lunchboxes. (Yes I have tried eliminating them from the lunchbox! By not buying them... teenage son says that he is the only lifeguard in the universe who eats wholemeal bread /watercress/rocket/fruit in his lunchbox and he will lose all cred if he doesn't even have a choc bar! And it's not even him on the diet etc...)
    So, snacks are: pears, apples, diet lemonade, lemon juice in water,doh. Max 1400-1500 calories per day. I do lose 2lb a week if I do this. The main problem is cutting out the alcohol; unlike most cfs-ers I've tolerated this most of the time (only white wine) and am probably getting dependent on its temporary restorative effects.
    I'm suggesting you aim for a pound a week, a pound a month is too ephemeral. Just cutting out fat in cooking will do a pound a week.
    I'd like to say you will be able to do the 10km one day, but I don't believe it is a realistic goal for a cfs-er. I'd love it if I was wrong. Keeping going all day without a sleep is a goal; a daily walk is a goal; a pound a week off is a goal. Remember setting goals for students? gotta be achievable. Good luck

     
  19. I read my post back and can see exactly how you could think I had made a decision to lose a pound a month.
    Actually I am losing a pound a week - it's just that my long term goal is to have all of my goals completed by the time I am fifty.
    I am hoping to achieve the weight loss bit by June next year! I've found a diet that suits me and have researched it to within an inch of its life. That's one of the perks of being a lecturer, you have access to all sorts of journals. In 2 weeks I have lost 5lbs and have not noticed I am dieting - though I may have just jinxed that [​IMG]
    I'm lucky though, I lost the snacky habit years ago. My downfall is large portions of not quite healthy food choices, I enjoy bread, pasta etc!
    I am currently tolerating alcohol well - but it is beginning to wear off. I should be able to start exercise in a week or two. Mile a day to start with - walking!
    And I refuse to give up on the 10K. I taught 12 - 15 exercise classes a week, ate well and drank no alcohol at all for about 6 years until the anaemia floored me. I even kept up 3 classes a week when I started teaching full time. I am determined to get fit again, cfs, anaemia, age etc will only make it harder, I know, but I am determined!

    In about 3 years I'll let you know. I may even write it in a more legible manner [​IMG]

     
  20. It has worked out quite easily, tbh.
    I followed the advice and bought slimfast drinks for the 'down' days, so that I could see exactly how few kcals I was consuming. I did that for the first 2 weeks and all went well.
    I did some research on low kcal foods, the Good Food webiste has some nice recipes, and made a list of 3 meals I could make/freeze easily so that I could replace the slimfast drinks.
    However, I still buy slimfast as they are just so easy at work... bought in bulk they are cheap too at about a pound a meal!
    I was most surprised that I stick to the down day at home, during the evenings. A handful of different veg and an egg all dry fried together seems to have become a favourite evening meal!
    Basically there are no real details, you just eat about 500kcals one day and eat normally the next. You can add kcals to the down day of you can't stick to 500kcals. I do Mon, Weds and Fridays and eat normally over the weekend, when OH is home. That is my personal modification so that I don't feel guilty for eating when he is home!
    The only real rule is that you MUST stay well hydrated.
    I have lost another pound this week so I know that my modifications are working well for me... and that really is it!
    I bought the book and have read it all and tbh, it isn't worth buying, unless like me you want to read his research and opinions. He even says as much! He recommends alternate days at 500kcals as a base and that each person makes modifications that suit their own lifestyle.
    It sounds odd, too good to be true etc etc. But it is working for me. I don't feel pressured, deprived or hassled by having to count anything.
    I don't think I would recommend it to every one, just because it sounds so a little off the wall, faddy and odd. But if you are healthy and hate 'dieting' and have a lot of weight to lose I'd say go for it! You'll know within a fortnight if it is for you or not!
    I hope that doesn't sound evangelical [​IMG] Or deluded !!
     

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