The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Tips for coping emotionally with M.E.

Copyright © Jodi Bassett 2005. This version updated July 2010. From www.hfme.org                         

Four of the most important ways to cope with M.E. are to:

1. Once you are sure of having a M.E. diagnosis educate yourself as much as you possibly can about the illness so that you can explain it to those around you and give yourself a much greater chance of getting some of the support you need (not to mention the best treatments and chance for recovery). Knowledge is POWER! (The paper A Million Stories Untold might be useful in explaining M.E. to your friends and family.) See also the new paper: M.E. vs MS: Similarities and differences. To read a list of all the articles on this site suitable for M.E. patients, carers, friends and family or severe M.E. patients and so on, see the Information Guides page.

2. Join a support group either online or one which meets in person. It really just helps so much (more than almost anything) to know that there are so many people who are going through the same thing as you are and that you aren’t alone. You might have to hunt around a bit to find a group that you really like and that really suits you but when you do it will likely be well worth it. (Finding groups which match your own severity level is really important; if you are sicker than everyone in a group it can make you feel like nobody really understands what YOU are going through; if everyone is much, much sicker than you, you may find the group depressing.) Hopefully you will make yourself some new friends who will really help you cope with every stage of your illness, and who you will support you in turn.

3. Stop accepting the blame for getting ill in the first place (or for remaining ill) if ignorant friends, family or Doctors have been telling you that this is the case (and even though you know it isn’t true have in some ways started to believe it a tiny bit). It is just nonsense! Nobody causes themselves to get M.E. through anything that they did such as; overwork, ‘stress,’ perfectionism, not ‘eating right’ or childhood abuse or trauma or anything else. M.E. is not a form of burnout and with the most positive attitude in the world you CANNOT will yourself well from M.E. It just doesn’t work like that unfortunately. Management strategies do have an important role to play in M.E.: making sure you avoid overexertion as is appropriate, avoiding all the foods and chemicals you may now be intolerant or allergic to etc. but so long as you are trying your best with all of these things – NOBODY can ask more of you than that. Don’t let stupid and ignorant comments get to you, you have more than enough to deal with just dealing with the REALITIES of M.E. let alone having to deal with things people have just made up about the illness!

4. Remember to cut yourself some slack when you need to, and to always be kind to yourself. Accept that sometimes you will overdo it and cause yourself relapses/blow up at someone out of frustration at being ill/make silly mistakes about things because of your M.E. affected brain, and a million other things – nobody is perfect and doing these things and constantly making mistakes are all just part of being HUMAN.

Coping with M.E. emotionally is very much linked to coping the best way you can with the illness physically, so see the Practical tips for living with M.E. section also, as well as the new Health, Healing & Hummingbirds website 

You might also like to read: What it feels like to have Myalgic Encephalomyelitis: A personal M.E. symptom list and description of M.E. Again, knowledge about your illness and your symptoms is POWER!

Jodi Bassett, 2012


 

What do you say when people tell you ‘you look well’ when you are really ill? How do you deal with getting abusive or nasty comments related to M.E.?

N writes: I know everyone out there will have had to deal with this at some point. You know the one - you are sitting there feeling like utter crap, and  someone says to you in and extra chirpy way, usually with a touch on the  leg "You're looking well!", What is your response?

I've had my inlaws do this to me a few times lately, and I'm always at  a loss for words. I don't want to be an ungracious grump and say  "Well I'm not!!" because I really know that they do mean well. But I really really hate it.

It's like the implication is there that you got better, and somehow didn't notice it, so they had to tell you. Or that you're not as sick as you think you are.

I need a nice answer, that very politely tells them that the way I look has nothing to do with the way I feel.

Any ideas?

N, Australian M.E. patient

---

Depends upon the source how I react. There are "some people" who just want to believe that I could be "cured" if I "would just make the effort". They believe this because it relieves them, in their mind, from any moral obligation to care, offer assistance, offer kindness, or focus on anything in life beyond their own needs.

I try to not have anything to do with them, and don't really engage on any meaningful level with them if I can help it. Just tune out until they stop making noise LOL

Sometimes I am just too worn down by it all and will snap at them,though, and then I am angry with myself because it was a waste of energy.

But other people really do mean well, and they can't deal with the immensity or scariness or injustice or futility or having challenged all of their illusions about Life, Fairness, and the Medical and Social Systems.

Maybe they also want to help and don't know how. With those people, the ones whose hearts and intentions I know are good, I just skip their words and address their feelings.

I just say something like "I know you really care and would like to help and that means a lot to me. Thank you."

Sometimes that is all that is needed. Then I can go back to fantasising about throttling the others :)) (especially the "if you only would really TRY ..." ones !!!!) Jo

---

When I hear this (and I hate it, too!), I find myself responding with "I wish I felt CLOSE to as good as you say I look" ... Or something similar like "WOW  looks can be deceiving, can't they?" Roseanne

---

All these are such great responses! Then there's always the classic: 'Oh good, I'm glad I don't look as ill as I feel!' or 'Oh good, I'd hate to look as ill as I feel!'

Maybe with variations: '...I'd hate to look as bad as I feel - that would be really scary!' or '... if I looked as bad as I feel, I'd be really hideous!'

Best wishes, Lesely (oh no!  We all know about ME-wonky-spelling-disease, but I don't want to catch 'Wessely'-spelling disease.) I mean, (typing very carefully) Lesley

To see the other replies made to this question, see the Group Comments page.

 

If family members are pressuring you to participate in scams such as the Lightning process, Reverse therapy, Mickel therapy, EFT and so on, see the new The Lightning Process scam page.

 

Email to fellow group member about coping with M.E., from Aylwin (long-time M.E. patient) November 2009

 

Coping with M.E. is a very fine balancing act. I think one trick is not to project into the endless future, it is totally overwhelming. As none of us really knows what will happen, you may well get real improvement over time. One day at a time is best. (When I'm feeling blue I remind myself that it's just a feeling I'm having right now.) Also, I take immense pleasure now in the tiniest things, seeing a bird through the window, a streak of sun on the trees, a funny joke. I'm lucky that I can watch some movies & more or less follow along, though I have no access to TV.

 

And it may be that you are not up to contributing, but I find a lot of relief & enjoyment hanging out & interacting here where we all understand. If you were able, it really would help you feel less isolated. In fact, I do most of my socialising online now & find it much less impactful than in-person or phone. It's just a different way.

 

As to meaning, well each of us works on that one (human being not human doing), but I suppose my spiritual beliefs have helped me there. We many not understand fully now, but some happy day we will (no not a Christian but do believe in meaning, afterlife etc.). I have my ideas about it.

 

Anyway the majority of people in the world live in terrible circumstances, hungry, homeless, horrible violence, & I think us "first-world"-ers have been led to expect safety & happiness through some obscure virtue, when most do not have those silly expectations that life will go just as they want it to. Life is hard however you slice it, & I do not know one person who has not had major grief, illness, or other disasters to deal with. How is just the luck of the draw is all.

 

Cancer is also terrible, yet they get the red carpet of the latest treatments, counselling, & lotsa public recognition, parades even, while we languish in the backwaters of medicine, virtually ignored <sigh>. I think that makes a big difference as well. Again, here is a remedy, & I am so glad that at least you did get to see Dr. H & have that validation.

 

I think of the Kubler-Ross stages of grief & I must say that I feel I've mostly, finally reached the stage of acceptance. It is what it is. Although I am also not a Buddhist I find some of the philosophies very helpful. A good author (if you could handle books on tape, I think hers are all available) an excellent writer is Pema Chodron, she has brought me so much comfort, especially *When Things Fall Apart* (Heart Advice for Difficult Times), though she also has one called *The Wisdom of No Escape* I'd love to read. She writes in short, simple essays which helps. BTW someone recently told me that she suffers from poor health that is very limiting too.

 

I have been through that discouragement & sense of hopelessness so often in these 23 long years. My heart does go out to you & though there are no big answers I hope these wee tips can help just a tad.

 

 

 

Email to the same fellow group member about coping with M.E., from Lesley (M.E. patient) November 2009

 

Welcome to the group. Sorry you're suffering with the terrible deprivation caused by this illness.

 

As for meaning in life, you're asking a profound question about finding meaning in the limited life that illness imposes. 

 

In a way, I think ill people are forced to confront this question of meaning which confronts all human beings, but well people can distract themselves with work achievements, meeting people and falling in love, travelling, etc.  We can't do all that. 

 

We can't find meaning in `doing,' and it can be a challenge to find meaning in just `being.'  As Aylwin said, we're human beings not human doings.  I think the Buddhist orientation toward ways of being, rather than achievements in the world, has a lot of wisdom.

 

On a practical level though, we all need things that help up get through the day.  It can be hard to think of meaningful or enjoyable things to do or experience with our limited health.

 

You mentioned that you can't read.  Can you listen to recorded books?  I don't know where you are, but in the UK the public libraries lend books on tape or CDs.  Also, libraries have large print books, which can be visually easier to read (doesn't help with cognitive difficulties, though).

 

If you can read and type enough for the Internet, online groups like this one can help so much.  I get such comfort and inspiration from this group.   Although you can't tolerate live conversation (as many of us can't, and I often can't), online communication can feel very supportive and meaningful.  Isolation is terrible - but if you have a computer, you can be in a community like this group. 

 

It may not seem like much, but by your honesty in posting here you may have helped others - we all struggle with the issues you are dealing with.  Reading your post is helpful to others who struggle to find meaning, but feel they're alone with this.

 

One last thing - terrible as it is, it may be that your suffering has given you the empathy and insight to understand the suffering of others.  I'm often amazed at the wisdom and warmth shown by MEites.

 

Big hugs and best wishes,

 

Lesley     

 

 

Meditation and breathing and relaxation exercises can be such an important part of coping with M.E. Nutrition can also have a massive impact on mental health and wellbeing. For more information on these two topics please see the following two papers:

 

Sara Douglass's comments on chronic illness, death and dying made on her blog are so spot on and are recommended reading. Sara Douglass is a brilliant fantasy writer (I'm a huge fan) and has cancer. I hope Sara wont mind if I quote parts of her ' The Silence of the Dying' article a little bit here:

Modern society cannot deal with death. We just have no idea. We are terrified of it. We ignore it and we ignore the dying. Recently I've had it hammered home on a couple of occasions how much the dying are supposed to keep silent, that 'dying well' in today's society means keeping your mouth firmly closed and, preferably, behind closed doors.

Never shall a complaint pass your lips. How many times have we all heard that praise sung of the dying and recently departed, "They never complained"?

Death in pre-industrial society was a raucous and social event. There was much hair-tearing, shrieking and breast beating, and that was just among the onlookers. Who can forget the peripatetic late-medieval Margery Kempe who shrieked and wailed so exuberantly she was in demand at all the death beds she happened across? Suffering, if not quite celebrated, was at least something to which everyone could relate, and with which everyone was at ease. People were comfortable with death and with the dying. Death was not shunted away out of sight. Grief was not subdued. Emotions were not repressed. If someone was in pain or feeling a bit grim or was frightened, they were allowed to express those feelings.

Now we ignore death. We shunt it away. Children are protected from it (and adults wish they could be protected from it). The dying are often not allowed to express what they are really feeling, but are expected (by many pressures) to be positive, bright and cheerful as 'this will make them feel better' (actually, it doesn't make the dying feel better at all, it just makes them feel worse, but it does make their dying more bearable for those who have to be with them). When it comes to death and dying, we impose a dreadful silence on the dying lest they discomfort the living too greatly.

By the mid-nineteenth century, if not earlier, the lesson was clearly implanted in our society's collective subconscious. Death should be silent. Confined. Stoic. All this silence and stoicism scares the hell out of me.

Now, with death lurking somewhere in the house, I have begun to notice death all about me. I resent every celebrity who 'has lost their long battle with cancer'. Oh God, what a cliché. Can no one think of anything better? It isn't anything so noble as a 'battle' gallantly lost, I am afraid. It is just a brutal, frustrating, grinding, painful, demoralizing, terrifying deterioration that is generally accomplished amid great isolation.

Let me discuss chronic illness for a moment. As a society we don't tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks. After that they're on their own. From my own experience and talking to others with bad cancer or chronic illness, I've noticed a terrible trend. After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. People drop you off their Facebook news feed. Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?

This is an all too often common experience. I described once it to a psychologist, thinking myself very witty, as having all the lights in the house turned off one by one until you were in one dark room all alone; she said everyone described it like that. People withdraw, emotionally and physically. You suddenly find a great and cold space about you where once there was support. For me there has been a single person who has made the effort to keep in daily contact with me, to see how I am, how I am feeling, and listen uncomplainingly to my whining. She has been my lifeline. She also suffers from terrible cancer and its aftermath, and has endured the same distancing of her friends.

The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they've got the message loud and clear.

People also don't know how to help the sick and dying. I remember a year or so ago, on a popular Australian forum, there was a huge thread generated on how to help a member who was undergoing massive and life-changing surgery that would incapacitate her for months. People asked what they could do. I suggested that if one among them, or many taking it in turns, could promise this woman two hours of their time every week or fortnight for the next few months then that would help tremendously. In this two hours they could clean, run errands, hang out the washing, whatever. And they had to do all this while not once complaining about how busy their own lives were, or how bad their back was, or how many problems they had to cope with in life. Just two hours a fortnight, with no emotional-guilt strings attached. Whatever she wanted or needed. Freely given.

Bliss for the incapacitated or chronically ill.

But that was too difficult. Instead the poor woman was buried under a mountain of soft toys, dressing gowns, bath salts and bombs, daintily embroidered hankies, a forest's worth of Hallmark cards, chocolates and flowers and exhortations that everyone was 'thinking of her'.

None of which helped her in any way, of course, but all of which assuaged the guilt of the gift-givers who mostly promptly forgot her and her daily horrific struggle through life.

Modern attention spans for the chronically ill are horribly short, probably because chronic or terminal illness in today's society is horribly tedious. Tedious, because we are all so uncomfortable with it.

Instead, too often, it is up to the sick and the dying to comfort the well and the un-dying.

Just take a moment to think about this, take a moment to see if you have ever experienced it yourself. The dying - sweet, stoic, silent - comforting those who are to be left behind. I know I experienced it when first I was diagnosed with cancer. I found myself in the completely unreal situation of having, over and over, to comfort people when I told them I had cancer. In the end I just stopped telling people, because almost invariably I was placed into the bizarre situation of comforting the well by saying everything would be all right (which, of course, it won't, but that's what people needed to hear to make them comfortable about me again).

The dying have been indoctrinated from a very young age into this sweet, stoic and silent state. They earn praise for always being 'positive' and 'bright' and 'never complaining'. Perhaps they are bright and positive and uncomplaining, but I am certain they lay in their beds with their fear and anger and grief and pain and frustration completely repressed while modern expectation forces them, the dying, to comfort the living.

I am sick of this tawdry game. I am sick to death of comforting people when all I want is to be comforted. I am sick of being abandoned by people for months on end only to be told eventually that 'I knew they were thinking of me, right?' I am sick of being exhorted to be silent and sweet and stoic. I know I face a long and lonely death and no, I don't think I should just accept that. I don't think I should keep silent about it.

Click here to view the Sunday Times article on Sara Douglass.

 

An excerpt from 'It's not personal' by Clytie, an Australian severe M.E. patient. This amazing piece speaks for so many of us with severe M.E. It gives our extreme isolation and suffering a voice. This is true very severe M.E., and nothing to do with mere 'fatigue' or tiredness.

….(Warning: temporarily disabling 'Brave and Cheerful™' mode)…

…. My family is perfectly willing to travel across the country to see me. They care, and they want to help. So they don't visit me.

Anyone who has had or dealt with a virulent chronic disease is probably getting the point by now: contact makes me sicker ... permanently. Early on, I would trade days or weeks of being much sicker, just to spend some time with friends or family, until I learnt that I never quite got back to my previous level of capability. As the disease "progresses", each time you lose more and more of your rapidly-vanishing capability. It's rather like borrowing money at very high interest, then not being able to repay it. However, this disease is even more extortionate than our banks: it doubles and triples the interest rate whenever you overdraw. You end up with nothing, which probably wouldn't be so bad if the process weren't so drawn-out and agonizing.

So, how do you feel if your much-loved relative asks you not to come and visit her? By the sound of my daughter's voice on the phone today, you feel disappointed, rejected and unappreciated. She tried very hard not to show it, but I know her. In the same way, she probably sees through my determined cheerfulness in other calls. The fact is, we're separated by this disease, and we both hate it. Do I feel abandoned by my family because they don't visit me? No, but I feel resentful and miserable that my condition prevents them from doing so. Who do I blame? I really wish I had something I could hammer or lambast. My grandchildren are toddlers, and I've never seen them, apart from photos. I couldn't be with my daughter when she gave birth, or help her afterwards. I'm really angry about that. Unfortunately, I have nowhere to direct my anger. I'm no longer able even to punch pillows or scream. I end up being a quiet victim, and in many ways that is the greatest humiliation.

My daughter had made a great effort. Even though she and her partner are very short of money, they planned to spend it on bringing the kids to see me, over thousands of kilometres, with all the difficulties of travelling with children on a strained budget. After that, they were going to move even further away, to improve their work opportunities and the environment for their children. But first they wanted me to have this chance.

God, I appreciate it so much. I am crying as I write this. It hurts so much to say "No". I wish, desperately, that there were some way we could do this. Actually to hug my daughter again, to meet her partner, to be in the same room with their beautiful kids ... why isn't there a way?

I want this article to stand as a public declaration to my daughter, that I love her so much and appreciate what she tried to do. I don't want her to doubt her self-worth, or feel unwanted in any way. I value her, and her efforts, more than I can possibly say….

 

Art therapy

If you are an artist, you may find that your preferred ways of working are no longer possible. These may have to be modified or you may have to think about becoming involved in different types of art. The types of materials you use might have to change to those that are less toxic or less time-consuming or less requiring of physical strength. If you can, try and find something that you can still do, even if it isn't what you would most like to do and you can't do it very often or have the same quality levels as you used to.

Art has so many different benefits. It can make you feel as if you haven't lost absolutely everything and help you feel reconnected to your pre-illness self. It can also help you vent negative emotions and work through various issues.

You might like to share your finished works with friends online via email or Facebook, so that you can continue to get feedback from fellow artists and friends. Artwork can also be sold online fairly easily (although getting sales is anything but easy!).

If you have some good friends and family around you and supporting you, exhibitions may be able to be organized from home with no need for you to attend if you are housebound.

 

Craft projects as therapy

If you don't see yourself as an artist and whether or not you feel you have some talent or not much at all, craft projects can be a really great way to spend some of your time when you are ill with M.E. If you want to do a craft project, then you can, enthusiasm is all that is necessary. You can build you skill level as you go.

Decorating a room or a table or putting together clothes and accessories involves artistsic skill, you may be more artistsic and have more of an eye for colour and textures etc. than you think.

Always having a 'project' on the go is so great for keeping positive and taking your mind off your daily struggle. There is also the sense of accomplishment when you finish something and the joy of giving some of the things you have made to friends and family.

If you make you own cards and letter writing paper you could even save yourself a bit of money.

Craft ideas:

  • Buy some lightweight card and fold it down the middle to make a greeting card. Then decorate the front of it using water-colour paints, pastels, pencils, or acrylic paints or even oil paints. (When using oil paints, avoid traditional turps and buy odourless turps instead.) You might choose to just use colours that you'd like to see together to form abstract designs.
  • Buy some (cheap) canvasses or water-colour paper and do a painting. You might choose to just use colours that you'd like to see together to form abstract designs. If you don't know where to start, there are books on abstract painting available.
  • Cross-stitch projects are enjoyed by some M.E. patients, along with beadwork and jewellery making, mosaicing, knitting and so on. If you still don't know where to start, perhaps find a food online craft shop and just browse until something takes your interest. There are also how-to books on most craft topics available.

You might also choose to be creative through writing poetry or composing music, or anything else that you have an interest in.

 

Pet therapy

If possible, having a pet cat (or fish or dog other animal) to keep you company can help with stress and the loneliness caused by the isolation that is so often an inescapable part of M.E.

Cats are generally less work than dogs, although they can still be too much for some people. Fish, birds and mice are probably less work than cats.

If fish, birds or mice etc. don't appeal, you may consider taking on a quieter people-loving older cat that needs a new home.

You may be surprised how different it feels to be home alone (or in bed alone) with a pet, as compared to truly alone.

That little animal presence can make such a big difference and pets can make you laugh a lot too. They can also provide a constant topic of conversation that is non-illness related and positive, and that everyone in your household can join in with.

 

 

On reality, distraction and resting in M.E. (from the Yahoo discussion group)

 

We all struggle to make a life with what we can, and look for meaning and pleasure where they can be found.

 

I would guess that for all of us, there are also times when cheerfulness fails.  Then we feel faced with a reality that is stark and brutal and possibly frightening.

 

Jodi recently told us of her spell of sadness, feeling painfully keenly the loss of being out and about.  Others here have shared bleak times when the reality of the illness seems overwhelming.

 

While it's good to stay positive where possible so that life can go on, I think it's brave to confront the harsh reality of having ME.  I also think it's necessary - MEites have to be ruthlessly realistic in order to protect themselves from the overexertion that comes from making mistakes about the possibilities in our lives.  We have to know when we can't go out, can't socialise, or can't go dancing or travelling.  We can't afford dreams that are really delusions.

 

At the moment, I feel very aware of the emotional difficulty of facing reality - and well as the need to do so, in order to deal with it.

 

I think we're all admirable as we find ways to go on living and laughing.  But I also think we're showing a courage which is necessary for survival when, at times, we face the stark reality of having ME.

 

Best wishes, Lesley

 

Note 1:  It's wonderful, the creativity and imaginativeness that we MEites show in finding meaning or purpose or pleasure or humour or distraction.  In my first `Reality' post, I didn't mean that we should sit around in doom & gloom all the time. 

 

Yes, as ______ said, it's a natural human response not to want pain all the time, and to take a break from the `whole ME thing.'  Absolutely!  We're human beings, as well as ME patients. 

 

What I meant was that there are some times (not all the time!) when we're very aware of the reality of our condition.  This can feel so bad, like a long dark night of the soul / being in the belly of the beast / being forced up against the sharp jagged edges of a painful reality.

 

It can take bravery to live through those difficult times when we confront our reality, and not try to run away from it.  Awareness of the reality of our illness makes us stronger and wiser.  In practical terms, it makes us better able to manage our illness, which is so important.

 

I completely agree with _____ that `a balance is needed but hard to acquire.' As Bea also said 'it is not easy to really face our reality. and it is important to do; maybe then we can put it in the back of our mind and do the days but we need to be honest.'

 

Note 2: This confronting reality business is easier said than done! I have to admit that this is the main difficulty I have with periods of `aggressive resting,' and with going to bed long before I can sleep.  As Jodi described, when I'm alone in the silence and dark with no distraction, I'm vulnerable to painful or fearful thoughts and feelings.

 

This is one of the big challenges of deliberate rest periods, I think - not just the boredom or physical pain, but being alone with one's thoughts and feelings. 

 

I think Jodi identified something important.  In practical terms, when planning a programme of deliberate rest periods, it's useful to be aware of the possibility that some of the motivation for keeping busy may be to keep these bad feelings at bay, so it might be harder than expected to stop `being busy.'

 

It's also good to anticipate the possibility of these bad feelings during rest periods, and to recognise them if/when they come.  Perhaps if these feelings are a challenge foreseen, they won't seem so overwhelming.

 

Note from Jodi Bassett (typing errors intact!): What I really hate, and get a lot..is where you are resting in dark quite room, and the thoughts start to come in, fear and legitimate worry about life with ME and your future....so you have that to deal with, but also, lots of pain AND a heart rate that is way too fast, or is beating painfully or erriatically or feels as if struggling to beat. It is dealing with BOTH at saem time that makes it so horrible...

 

It's silly, and illogical...thouihh it makes sense when you consider these  things...that i find it fcar far easier to rest extremely, when I am not so  ill! When u are really ill is whej u need it most...but mostly I cannot cope with it, and its when I feel better tgan usal that I am most likely to rest.

 

It was actually feeling better than 8sal the last few months that prompted my desire to rest extremely in januray 2010...NOT a deterioration of my health as many have very kindly comiderated with me on. (Thanks though!)

 

It seems illogical, but isn't! So much easier to rest and cope with scary real feeling...cope with reality of situation really, really realise it.....when your body isnt screaming at you that you are v ill and SHOULD be  worried! Musings:)

 

From the Irish ME Tips Collection:

Being ill is very hard and it is important to do what you can to look after yourself emotionally. Maintaining your morale will always be a juggling act, and you should expect to feel down some of the time, especially if you have insufficient support or are severely ill. Here are some ideas which might help in the battle for a reasonable quality of life:

You will probably have lost many of the things you used to enjoy, but over time people do find they develop new interests and hobbies which fit in with the limitations imposed by their illness. Creative pursuits can be particularly satisfying such as making greetings cards, sketching, painting, embroidery, tapestry, or photography. Pastels, pencils and crayons need no water so they can be used in bed.

Hug a teddy, a pet, or a person. Learn a foreign language by tape, or find out more about science, stamp collecting, birds, religion, or anything else that interests you. All sorts of writing are popular with people with M.E. (letters, poetry, articles, diaries). You might fancy compiling a book of family history, photograph album or story of your life. Genealogy (family history) can be conducted by post, at least back to 1837. Make use of your sense of humour, with cartoon books and comedy on radio or TV. Listen to talking books or music. Having a wash and changing into clean clothes can boost morale, as can bathing with aromatherapy oils or bubble bath.

Cultivate your senses - take time to quietly observe: notice the feel of a cup in your hands, its texture, its temperature, how the light hits it. Hold a smooth pebble. Spend time looking at something beautiful: a flower, reproduction of a work of art, landscape photograph, the clouds or the stars. It might be possible to change rooms to get the best window view in the house.

Think about improving your living space. If your only journeys are to and from the bathroom, these will be more pleasant if there is a nice plant on display rather than shampoo bottles.

If you have a willing assistant and not too many allergies, food can play an important part in quality of life, especially if you spend a lot of your abilities eating. Try out new foods and recipes, use an attractive bowl or cup, have sandwiches cut into interesting shapes. Have a virtual holiday or celebrate a special day.

Here are some ideas for very severe illness levels: watch someone else blow bubble mixture; wear a temporary tattoo; use an aromatherapy burner; practice meditation or relaxation techniques; have a helium balloon to watch; close your eyes and imagine a nice place.

Different people have different ways of coping. It is up to each individual to find out which strategies suit them best at that time. Be patient with yourself, you are living with a very difficult illness; it is natural to feel frustrated and angry sometimes. It is common to feel guilty for being or staying ill, but try not to blame yourself; it's just bad luck. Sometimes it will be appropriate for you to grieve your losses and feel sorry for yourself. Have a good cry when you feel the need to. At other times it will be appropriate to try and pick yourself up emotionally, and distract yourself from your problems. It can help to remember that there are other people suffering too; people who are going through similar problems and people who are suffering due to other reasons such as hunger or war. Take one day at a time, and look after your emotional well-being.

Remember that you are no more or less valuable than anyone else.

Identify small pleasures and take time to do things that you enjoy. Where possible avoid situations which make you feel stressed or unhappy. Things which are difficult but necessary can sometimes be less stressful if you break them down into more manageable chunks and tackle them before they become urgent. Try to balance demoralising tasks with activities you will find enjoyable or relaxing. Although you can't have a day off being ill, you might still be able to have regular breaks from 'jobs'. It is difficult to express emotion with severe illness. Here are some possibilities: Express it by talking to someone, in poetry, art or writing, or in prayer. Listen to music appropriate for your mood. Squish a whoopee cushion; pop bubble wrap; throw a soft toy on the floor; or play with Playdough. Tear up scrap paper; scribble all over scrap paper or write down angry words and then rip them up. Watch a candle, use relaxation or meditation.

 

 

MEite Barbara writes: Something I have done that keeps me visualizing; I make scrapbooks (not the new fad scrapbooking) from magazine articles/pictures...I put quotes and ideas in this book. When I am so lost and hurting that my dreams won't ever come true..I pull out my book and even if it inspires me for one more nano-second of hope for tomorrow it is worth it. Even if it is delusional....sometimes it can lift my spirit.   

 

 

Some strategies and thoughts on coping from a ME sufferer (to give you some ideas maybe):

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 significantly 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.

 

 

Avoiding stress 

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.

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.

 

 

Consider becoming involved in M.E. activism and advocacy

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!).

 

 

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 http://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'

 

 

A brilliant post written by M.E. sufferer Johnno, in response to a question from another group member about grief and sadness and coping with M.E.  

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

Johnno (Melbourne)

 

 

An important question to ask when you are dealing with M.E. and having trouble coping is, is it depression or grief?

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?

 

 

If you’d like to share some of your own ways of coping please submit them by email

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

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.

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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

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