Hints and tips are in two sections:

Practical Hints and

Hints for Coping with M.E. Emotionally (on this page.)

Ingeborg, on her website 'Borg of Space' recommends:

Most importantly: try to enjoy the small things in life and ask for help if you need it and of course pay attention to your body and don't overdo it.

THOUGHT: I am still better off, in many ways anyway than 2/3rds or people who have no reliable access to food, water and shelter and a war and violence-free life.

THOUGHT: I think just to be lucky enough to be born in Australia you (almost!) don’t get to complain about anything else, no matter what horrible things happen to you after that. No matter what happens to us here we are still better off than most people in this world. (Insert your own country here) We are so lucky; so many people will never have and couldn’t even dream of having lots of the things we take for granted every day.

THOUGHT: To not compare my life with my peers but instead with people around the world and of all types. The comparisons tend to come out more favourable that way! Yes I may have the crappest life of all my 'well' friends and family and every other person I know that doesn’t have M.E., but on a wider/world scale, I'm not doing so bad!!! You just have to pick the right people to compare yourself to so you come out on top is the trick - it makes you feel so much less unlucky!

THOUGHT: I just have to get through today and by tomorrow it wont matter so much how horrible it was as I will have forgotten it almost completely (oh the joys of memory loss!)

THOUGHT: I cling to the fact I will get better, I tell myself that this is not forever, all the time (even though it very well may be, and its much more likely I'll never recover than that I will). But I tell myself that anyway, even though the facts don’t back it up, just because I need to believe it and without the hope of getting better life isn’t worth living. It’s a necessary delusion that lets me keep going every day. (I believe it because I have to, not because I really believe it.)

THOUGHT: I feel so grateful I got to be healthy for 16 whole years before I got sick, many people never have that and are ill from birth. At least I have been healthy and know what that’s like to a certain extent – even if I don’t remember it much! At least I got to have my basic education before I got sick too, I couldn’t imagine having to struggle through primary school or high school with this thing.

THOUGHT: I feel lucky I was born healthy/average or whatever. I have the right number of fingers and arms etc and a 'normal' appearance and intelligence, so many people don’t have these things ever. Yes I feel mad I can’t use these things because I am ill but at least I was lucky enough to have them in the first place to lose! If I ever get better I can DO things with my life. I also feel lucky I have had the opportunity for a good education. Many people don’t get even half as much education as I have had.

If people choose to believe I am not ill it is their ignorance and hang-ups that are the issue, it really is nothing to do with me. I try to do all I can to convince others close to me (by giving them copies of my essays and research and things) but if they choose to still stay ignorant after that then I will know at least that I have done all I can and that I can do no more but accept their decision however hard that is.

I try to resist the urge to plead with 'disbelivers' about my illness being legitimate and severe as it makes them even more sceptical as they seem to see it as me being really interested in trying to get sympathy. I refuse to put myself in a position of having to justify my illness to someone else. It’s b***shit and makes you feel like dirt and I refuse to do it any more. I’ve done it for such a long time already and it’s got me nowhere It is so obviously a legitimate illness and if they just opened their eyes they’d see that. They really are much more likely to come around if you just try to get on with dealing with your symptoms as best you can without saying anything and if they don’t then they obviously have their heads up their..... and can just get stuffed anyway!! Harsh but fair *grin*

THOUGHT: I look forward to the fact that if I ever get well and get back into the world, I will deal with it so much better than I ever would have had I not got ill. There’s no way I will worry about small things going wrong when I know what its like to live in hell for years. If I get even a bit more well I will lead a great life, I’ll make it great. (Not that I wouldn’t swap all this personal growth for recovery of any kind in a SECOND – I would! But you have to do the best with what you’ve got)

THOUGHT: I look forward to visiting all the friends I've met online if I ever get well too. I've made some great friends I'd never have known existed otherwise.

I also live almost totally in the moment. Partly because I have the attention span of a fly, partly because life is so monotonous, but mostly because it’s the least stressful way to be - and life is so difficult sometimes with the M.E. symptoms you can only get through it one second at a time too.

It’s a good idea to try to have some nice event planned and on the calendar so I can focus on that when I feel down, I always like to have something to look forward to. It’s usually only small things like a visit from a friend or something. Or Christmas or a Birthday, or someone else’s Birthday. If I have no fun things I choose a minor one like something on TV and try to focus on that.

If I am going through a real rough patch I like to always leave myself with something good for the next day. Anything. Right before I go to bed I'll paint my toenails purple, or move my flowers and things around a bit so the room looks less samey. Or I'll have some TV show I like on tape all ready to play. Something, anything! No matter how small, just one positive thing to cling to for the next day because I know I’ll need it. I save any new clothes I’m given on my Birthday or whatever for really bad days when I need the cheering up the most.

THOUGHT: I tell myself that I'm dealing with a worse life than all but 2% or less of people will ever have to deal with and so I should give myself a break, as anything short of suicide is showing brilliant coping skills! I think you have to let yourself fall apart occasionally too. We are only human after all and perfection isn't actually a good thing, or anything you really want to be aiming for.

A note on avoiding and minimising stress (taken from Treating M.E. – The Basics)

Stress unequivocally does not cause M.E. but as with most illnesses, stress can exacerbate the symptoms of M.E. Unfortunately, stressful situations also become harder to handle when you have M.E. and so it is important to avoid as many stressful situations, tasks and people as possible. The stress you can’t avoid you’ll need to learn to minimise as best you can. If you are able to meditate (some sufferers lose this ability) this also may help considerably with stress reduction. Talking about what is bothering you to friends, family or to other M.E. sufferers in your support group may also help. Some sufferers also pour out (or vent) their feelings into private journals; whatever works best for you.

The most intense source of ‘stress’ in a M.E. sufferers life is the M.E. itself (of course) and it is completely normal to feel sad, mad, angry, irritable and frustrated sometimes because of your illness. (Indeed it would be abnormal if you did not feel these things sometimes). It is also normal and necessary for you to spend time grieving for what you have lost through the illness sometimes too; to feel sorry for yourself somewhat, and to cry as much as you need to. At other times however, you will need to try to find ways to take your mind off thinking about yourself, to try to distract yourself from such thoughts.

As with comparable neurological illness such as multiple sclerosis or Parkinson’s, along with the primary symptoms of the illness some sufferers of M.E. will also experience a smaller number of organic emotional or psychological symptoms. Possible symptoms include; emotional lability (mood swings), irritability, anxiety or panic attacks, emotional flattening or a degree of lack of inhibition. The damage to the parts of the brain which control emotion are of an identical nature to those that affect physical function; these emotional symptoms are an organic part of the illness caused by the same anatomical and physiological damage to the brain as sleep disorders, seizures or any other neurological problems or symptoms are. Exacerbations of emotional symptoms in M.E. also tend to be linked to exacerbations in physical symptoms, there are most often not environmental triggers. The degree of severity of these symptoms varies considerably from patient to patient; some will have significant problems, others will have mild or only occasional problems and some will be unaffected. Like any other part of the illness, it is up to you (and your doctor) to try to minimise the effects of these symptoms as best you can.

If any of these emotional symptoms becomes a real problem for you however, or appears to be worsening (particularly feelings of depression, grief or sadness) and you feel you might benefit from outside help; it is important to find someone who is knowledgeable about M.E. to advise and treat you for these problems for this to be helpful. Psychologists or counsellors who see your emotional symptoms as your primary illness (rather than as a reaction to – or symptoms of – an organic and systemic neurological illness) and as the chief cause of your physical disabilities will be of little help and indeed (as you can imagine) could make things even worse for you emotionally. It will also pay to shop around until you find someone who you think is a good match for you; don’t expect to necessarily like the first person you see and don’t let a few bad experiences put you off if this is something you truly need. Hopefully your perseverance will pay off in the longer term.

• See Verillo and Gellman's Treatment Guide for further information (details of this book are given below) and Coping with M.E. Emotionally and also Sadness, Frustration, and Depression and Stress and Chronic Illness by Mary Schweitzer. For a list of online support groups see: Support Groups. You might also like to buy (or borrow free from the library), different books on stress reduction and meditation; some are better than others so keep looking until you find one you like. See The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List for more about the symptoms of M.E., and stress quotes for more about stress and M.E. (and why stress can never cause anyone to have M.E.)

Consider becoming involved in M.E. activism and advocacy (taken from Treating M.E. – The Basics)

Unfortunately, while many M.E. advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in many (or even most) cases and so the need is great for individual M.E. sufferers to participate in M.E. activism and advocacy. Aside from the gains to the M.E. community in the longer term however, this sort of activity can also greatly benefit the participant individually. It can provide a real sense of purpose, achievement and of pride. It is also a healthy and positive way to channel your anger and frustration at how poorly M.E. sufferers are treated (or how badly you have been treated).

Start small by just educating yourself and then those around you about the facts about M.E.; friends, family and fellow sufferers. That might be enough for you (and everyone doing just that would really help), or you might then like to look at writing letters of complaint to politicians, or to the media or to your local M.E. group; tell them what needs to change, what the real facts are and how important this is. Where you go from there is limited only by your imagination …well that and of course, your illness level (unfortunately!).

• See M.E. Activism and Advocacy for more information on this topic (and for information on why many or even most M.E. groups are now some of the worst sources of information on M.E. available and how and why many are unbelievably now working directly against the best interests of M.E. sufferers). See also: Activism Articles, What is M.E.? Why the disease category of ‘CFS’ must be abandoned, Smoke and Mirrors and Research and Articles in Context.
• See also Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups which is available in text form and also as an animated video.

Sadness, Frustration, and Depression by Mary Schweitzer, 1997

We who are [ill] struggle with three emotions: sadness, frustration, and depression -- they are not the same, and the answer to them is not the same. But when we talk about them, doctors and friends seem to think they are the same.

(Click the link in the title to read the whole article)

Stress and Chronic Illness © 1999 by Mary Schweitzer

What happens to a patient who is severely ill and remains undiagnosed - and therefore untreated - for years and years? First, you lose your job. When you lose your job, you lose your health insurance as well as any chance at private long-term disability payments. Without disability insurance, unless you have a spouse or parents who are willing to support you, one by one all of your assets disappear. Without health insurance, you can no longer see the doctors who specialize in the disease, and are forced to go to emergency rooms or clinics when the situation gets so bad you can't stand it any more. It seems that there is no one in emergency rooms or public clinics who has the slightest idea of what chronic fatigue syndrome is.

What could be more stressful than this?

(Click the link in the title to read the whole article)

An excellent article to give to friends and family to help them understand the limits imposed by illness is 'The Spoon Theory' by Christine Miserandino www.Butyoudontlooksick.com © 2003. Christine has Lupus, but the article translates fairly well to some M.E. sufferers too. (although it is less appropriate for severely affected sufferers, who have no 'spoons').

"As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick".

(Click the link in the title to read the whole article)

ME sufferer Pat Mathewson has written a short account of how ME has affected her life for the past 25 years. How restricting it is and how few people have any real understanding of the severity of the illness. Pat is wheelchairbound due to M.E.

Click here to read Pat's piece 'This is what M.E. means'

Hi _________,

I wanted to respond to your question about when does one ever come to terms with this illness?

My experience after 20 years of it is that you sort of come to terms with what you are able to do and not do, the symptoms are probably the easiest thing to accept and just put up with, and you invent ways to make your day interesting and worthwhile, which to some might be trivial but it means that you can go to bed knowing that you have done something with the day.

Then suddenly out of the blue all of this acceptance stuff gets turned upside down, this can happen quite regularly, and at times like this you experience the full force of your loss.

At times I still grieve my inability to participate in life like normal people, and such participating covers a lot of levels: social, financial, physical, and emotional.

Then there's sex, beer, parties, shopping malls, decorating and repairing the house, feeling awful that my dogs don't get walked regularly, the isolation both physical and internal that comes from being unable to "share" what you are really going through, having to think about what you can eat, having to do the "must-do" things in a day which might be all you can achieve for that day, dealing with people close to you who put down your illness rather than acknowledge it.........bumping into things all day, having to drive home when you know you can neither focus your thoughts or your eyes, and yet you have to get home!!!!!!!

And then things change again, and one seems to be able to wear it all more easily, you notice the birds in the trees, the sunshine, the flowers, and can acknowledge that you cooked a great meal, cleaned up, or even supported someone else whilst overlooking your own pain.

It is I fear a roller coaster, that seems to get easier the more often you ride it, but not because anything about the ride changes, it will always have those plummeting falls that take your breath away, but because something within you acknowledges that you have been here before, and that somehow makes recovery quicker.

____ said in a recent post that anger is a very necessary and natural thing, and in many ways so is grieving.

To lose so much and not grieve would be un-natural, and I belong to that school which believes in acknowledging those feelings rather than denying them, or chasing distractions to avoid confronting them.

When feelings of loss arise they have a reason and purpose and need to be acknowledged, even perhaps allowed to sit centre stage for a while, for in the same way that an incomplete grieving procedure at the loss of a loved one leads to relapses of emotion at a later stage, much can be said about incomplete grieving for what might have been in our lives if only.........................

It is my experience that people with M.E. are amongst the bravest people I know, committed to survival, and have amazing skills in finding ways of coping. They are willing and able to push themselves to extremes if somebody else is depending on them, even though there will be a "cost" to themselves at a later date.

Most of all they have this wonderful quality of "hope", generating a whole new way of living, and even managing to create light in a world that on some days seems to be very dark!

I guess what I am getting at is that I don't believe there really is an end stage of acceptance, as someone or something will always come along and remind you of your awful reality from time to time.

Therefore accepting the inevitable nature of the "roller-coaster" with its highs and lows is probably a more useful goal than expecting yourself to be able to learn to "accept" this illness.

IMHO

The distinction between true organic depression, and natural grief and sadness which comes with having your life torn apart by something like Myalgic Encephalomyelitis is an important one as normal emotional responses do not require medical and diagnostic labels! We have enough bogus psychiatric labels applied to us already surely?

Again, coping with M.E. emotionally is very much linked to coping the best way you can with the illness physically, so see the Practical Hints for Living with M.E. section also, as well as the new section; Treating M.E. – The Basics which is a must-read and highly recommended for anyone with M.E., but particularly the newly diagnosed.

For more information about all aspects of M.E. see ‘What is M.E.?’

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I hope you have found a few things here that will help you in some way with coping with M.E. emotionally. Best wishes to you all in your battle with M.E.