Category Archives: ME/CFS

M.E. Awareness Day 12 May 2012

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?

April 1998

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.

Poor memory.

Clinical depression.

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.

Paul S Allen 12 May 2012

(updated from a post on this site in May 2010)

Petition regarding ME/CFS Presented to NZ Government

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.

Here are other articles regarding ME/CFS including our story.

Paul S Allen

Technology versus the personal touch

Paul S AllenThere’s an assumption – be it in government or enterprise – that people have the understanding and the skills required to use technology.

For example, filing company returns has to be done online, and accessing assistance in some cases can only be done via a website. So many services require people to have an internet capable device/smart phone to get the best value or benefit. But what about those who for one reason or another do not or cannot get access to the internet? Should they be penalised or disadvantaged?

This is a reminder to all:

* Not everyone has access to the internet! Of those who do, not everyone has access to quality broadband infrastructure. New Zealand has one of the poorest broadband infrastructures in the developed world.

* Not everyone has a mobile phone! Not all mobile phones are smartphones.

* Not everyone has a Facebook account or is connected to the world via social media.

Now don’t get me wrong: I love technology. It can be a fantastic tool for social interaction and productivity. I love my gadgets and hardware, I love broadband connectivity. I have met (virtually) many people both here in New Zealand and all over the world because of social media. But these virtual networks will never replace real, personal and physical interactions that are important for normal human life experience.

The more I use technology, the more I start to value walking into a shop and interacting with the staff or picking up a telephone and talking to someone, rather than sending emails or status updates to each other.

The online experience should enhance offline personal interactions – not replace them.

I have been shopping around for a walking stick for my wife who has a long-term debilitating illness (Myalgic Encephalopathy / Chronic Fatigue Syndrome). I did not just want any walking stick; I wanted one that was practical and most importantly looked good.

We had seen a few around and found a great selection on the Disability Resource Centre website, but the small thumbnail gave no impression as to how it felt or how true the colours were. It was only when I called into the showroom in Auckland on a recent trip and spoke with the staff that I chose the right size and colour. The staff were incredibly knowledgeable, helpful and friendly, especially important for the type of purchase that I was making.

Now I have seen how this organisation works and who the staff are, I would have no problem using their website for other orders, but if I lived closer I would still prefer to call in person.

Technology can be a great benefit for many and even provide a way to communicate with the outside world, but to assume that everyone has access or adequate services is a mistake.

No matter how good your website is or how accurate the information, people often need someone to talk to, to bounce ideas around with and who can give an immediate response to questions.

Making the assumption that everyone will use your app, visit your website, read the information, or even know where to start looking, could alienate the people you need to connect with.

Social interaction doesn’t just mean setting up a social media account – it means a real person connecting with a real person.

Paul S Allen 

Also published on Idealog Magazine 

idealog

Hope, Attitude and Reality: Finding Strength in Difficult Circumstances

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.

Three thoughts

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.

Paul S Allen

Please also read “Which is best? Positive Thinking or Positive Action?” by Claire Boyles on her site Life Matters 

Autumn Leaves by Paul S Allen

Life With Myalgic Encephalomyelitis Chronic Fatigue Syndrome

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.

Paul S Allen

Beauty in a Broken Shell

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