Living With M.E.
I am currently the vice president of the Association of New Zealand Myalgic Encephalopathy Society (ANZMES) the national organisation that has been serving New Zealanders with Myalgic Encephalopathy/Chronic Fatigue Syndrome since 1980.
Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) is a serious and complex illness characterised by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) it affects multiple systems of the body, in particular, the nervous and immune systems and causes neurological problems and other symptoms.
This is the story of how this chronic illness has affected both my wife who has the illness and us as a couple.
This is a condition that my wife has for many years now. We live with it every day having to manage time, energy and at times the sheer frustration that comes from not being able to enjoy the things that others take for granted.
The following is an interview with her so that people will get an understanding of what she (and us together) deal with daily.
When did you get sick?
What was life-like before you got sick?
I was a very busy person, a very active member of a church, studying full-time while working at a church; I was involved in a band playing keyboards, a singer, involved in theatre. At work on the tenth floor I used to take the stairs two or three times a day. I used to enjoy long walks, aerobics, and music, getting involved in community projects including working with the disabled.
What can you do now?
Not much, virtually all of that has gone, I do a bit of craft work occasionally, read, and light housework, but even this has to be managed very carefully. Even taking a shower can be one of the most tiring activities. I do bits and pieces but require to rest for long periods often
Describe how you feel physically?
I’m sensitive to light, smell and noise. In regard to light the “eco” bulbs and fluorescent lighting is the worst due to the flicker.
There is a constant body ache always there at some level.
Sleep is broken and irregular.
Constant fatigue, I would describe it like a heavy dragging feeling like walking through a pool of water with lead weights on your hands and feet.
I can’t walk too far and can tire very quickly.
Find it hard to concentrate and when I do I can’t keep it up for long.
Developed food allergies/intolerances.
Doing too much (more than usual) makes things worse and requires a long recovery time to get back to “normal”.
Even the weather can affect me whether there is not enough sun, too hot/cold, high pressure systems can produce “heavy air days”.
What do you want others to know about ME/CFS?
It is currently incurable, although there is great research being done around the world; research is also being currently undertaken in Dunedin, NZ.
It is invisible; people with ME/CFS may look well but they hide what is going on inside.
It is not laziness.
It is not just in the mind.
It is not an excuse.
It is real not imagined.
It is a physical illness.
ME/CFS can often affect very productive and active people, stopping them in their tracks.
How can others help or assist people with ME/CFS?
We don’t want pity – just understanding.
Don’t forget about us.
Plan contacts in advance.
Don’t be offended if we need to change/cancel plans especially at the last minute.
Remember that we are sick not “uncommitted”.
Take us as you find us, some days are better than others.
When you come to visit know that short visits are better.
It is not just about the person with ME/CFS but it also has a major effect on their families.
Wider effects of ME/CFS
All aspects of life are changed when you or someone in your family gets ME/CFS, including finance, food, social activities, friendships can change, community involvements stop, even the thought of or ability to have children becomes difficult.
There can be a feeling of isolation as the world revolves around you, while you feel that nothing ever changes. Those who get sick may feel guilty because they can’t “contribute”; those who are close who look on see a person who is but a shadow of what they were.
We have our moments of frustration. We occasionally allow ourselves to have a good moan, but this achieves nothing apart from getting it off our chests. We have had to put systems in place to manage the energy levels. Just as you can spend money only once we can use energy only once so we have to budget how it is spent. If we do something today, even as simple as having a friend over for coffee, then we can do nothing for the next few days.
It has not been an easy few years, and unfortunately there is no sign of improvement and of recent times the illness has become worse again, but we hold on to hope that one day someone will come across a treatment or a cure. Until then we will hold onto hope.
If you know of people with this chronic illness, or if you have the illness yourself contact a local support group. A list of New Zealand support groups can be found on the ANZMES website www.anzmes.org.nz.
Please watch the video “Sweet Lullabies”. I wrote this song for my wife and for those who suffer from chronic illnesses like ME/CFS and for this who have other hidden illnesses. If you would like a copy of the song in mp3 you can purchase it from Amplifier a music site dedicated to New Zealand music.
(updated from a post on this site in May 2010)
A petition regarding myalgic encephalomyelitis/Chronic Fatigue Syndrome presented to Government in New Zealand
If you would like to know more about this chronic illness please contact ANZMES.
Paul S Allen
Positive thinking or a positive attitude may not bring about a cure, recovery or solution, but neither will negative thinking or a negative attitude. It will however improve your current state of being.
1: Always hope, never lose hope, while there is breath in you there is hope.
2: Choose your own attitude.
“The last of human freedoms – the ability to choose one’s attitude in a given set of circumstances.” Viktor E. Frankl
3: Accept the reality of your situation, act appropriately and always hold on to faith, even in difficult circumstances. Remember the Stockdale Paradox
“This is a very important lesson. You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.” Vice Admiral James Bond Stockdale
Positive thinking based in reality is positive action.
Please also read “Which is best? Positive Thinking or Positive Action?” by Claire Boyles on her site Life Matters
MECFS The life of those who have it and the families of those with MECFS
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term chronic illness that effects 20,000 people in New Zealand alone, millions would wide. These are the people who have the condition, there are many more than that who are directly impacted due to a family member with the condition.
The family may not suffer the debilitating fatigue and the other symptoms of the illness, but they live with the consequences of it everyday. It is good to remember that the whole family unit is effected when one of its members is unwell.
My wife has this illness, she had it since 1997 she suffers from extreme fatigue that restricts her ability to function even on simple and routine tasks. She can’t sleep through the night, fatigue causes physical pain in her body, she is sensitive to noise and light, the illness is not in the mind it is very real and a physical disability. It is not obvious to anyone who sees her and she often puts on her brave face. Over stimulation and physical activity has a serious effect and can cause relapses into a “worse” level of the illness.
Things we used to do together become things in the past, no more do we go for long walks together, or have late nights out with friends, church or other meetings are avoided as even in small gatherings there can often be sensory overload.
Other effects are…
- Reduced income, an increased mortgage and medical bills.
- Limited social connections
- Rarely venture too far without long-term planning and pre-rest with long-planned recovery time.
- Have to plan spontaneity.
I say this not to moan, but to raise awareness of the condition. Governments should invest in research to find a solution/treatment for this illness.
If you are in New Zealand please find out more about ME/CFS from the ANZMES website.
Having a negative thought is not wrong!
Being critical is essential.
Disagreement is necessary.
Ask yourself this the next time someone says you are being negative, “who has the problem?”.
A person who appears to be happy and cheerful, with a smile on their face and a song in their mouth may actually be deluded and blind to the current circumstances that exist around them.
I give you permission (not that I need to) to be negative. Acknowledgement of your current situation and a realistic reflection of your circumstances might just be the catalyst for change that you need or it may not. Not all situations are under your control and sometimes the situations are genuinely dire. No amount of smiling of false hope will ever change that.
“This is a very important lesson. You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.”
Stockdale did not deny his circumstances, (prisoner of war, Vietnam, 1965 – 1973), he acknowledged them, he did not lose faith although I am sure it was tested. Where others did not last he did, not by being optimistic but by being a realist. (listen to Jim Collins, author of Good to Great talk about Stockdale here)
Being told to “not be so negative” and putting on a fake smile or positive outward demeanour is just like the emperor in the tale of “the emperors new clothes”. He was convinced by people that he was fully clothed but was in fact naked.
Denying your circumstances and failing to confront them is exactly the same, you may be wearing a smile but that is all you are wearing. Negativity could be highlighting an underlying issue that needs to be addressed, suppressing it could deny the opportunity to bring about a solution.
If you are going through a difficult time or there are situations that are hard and need changing, acknowledge it, speak up, speak out, be critical, be negative.
No change ever happened to improve a situation without someone first being critical, negative or rebellious.
Will people be offended?… Yes
Will leaders like it?… No
There are times where the best course of action is to remain silent, if you are able, these are the same situations that you need to walk away from. When your personal values need to be compromised just so you can fit it to a particular group you need to question whether that group is worth being part of.
Do not ever remain in a circumstance that is causing you harm.
Do not let peer pressure and social expectations force you to wear a mask that does not reflect who you are or what you are going through.
Some circumstances are not able to be, or are not easily, fixed, for example long-term chronic illness but you can do the following… Do hold on to hope, do have faith, do acknowledge your circumstances and act accordingly.
Do not live in denial, especially to please others.
If you are struggling and need help to deal with difficult circumstances seek immediate assistance. Talk to your health provider, doctor, counsellor, or one of the many services like Youthline or Depression help-lines or mental heath workers. Look in your local phone book or contact your local citizens advice bureau for details.
New Zealand contacts
Suicide Crisis Line on
0508 82 88 65,
Lifeline on 0800 543 345 or
Youthline on 0800 376633.