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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)

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Waiting For The Answer

How do you cope with waiting?

Waiting patiently for the answer/cure/solution can be frustrating at least. In the case of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) the waiting is long, frustrating and painful.

Over the past few years much progress has been made in research into the condition with much debate over possible causes and treatments. But “research” is not an answer in itself, and isolated studies are but a step on the way to a bigger picture of the situation. The difficult aspect of this current research is that it has become very public and heated debate has ensued.

The good thing about the current research is that it has brought the subject into the mainstream media and into the agenda of larger research organisations. It has also brought about problems including unrealistic expectations of a cure/fix and  misplaced hope in incomplete research.

(For the interested  please study the research into XMRV from The Whittemore Peterson Institute.)

The research and the increased awareness is great but it does not replace the desperate need to manage the person with the illness here and now. Realistically any answer may be years away so what can help now?

If you have the chronic illness

White Island, Dunedin

  • Hold on to hope
  • Hope in itself does not change the status quo – but it does change your attitude
  • Learn to pace yourself – remember you are sick
  • Balance in all things
  • Get involved or contact support groups – where you can and if you are able
  • Learn to rest body and mind
  • Do not have a single focus on or about the illness or problem
  • Do what you can not what you can’t
  • DO NOT blame yourself
  • Distract yourself from time to time
  • Keep in contact with those who provide care for you (professionals/family/partner)
  • Have a good moan from time to time – get it out, just don’t dwell there.
  • DO NOT feel guilty for what you cannot do
  • Keep in contact with you medical support
  • Don’t be proud – ask for help if you need it

In the business community there is an increasing understanding of the importance of “work – life” balance, why should managing a chronic illness be any different? Although there are physical limitations on what you can do, there are things that you can do. You need to work out what they are, small things and simple things should not be overlooked.

The word “patience” can be a swear word especially when you want and need solutions now, but it is what is needed.

Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one’s attitude in any given set of circumstances, to choose one’s own way.
Viktor E. Frankl

If you are not coping then you need to get help! If you are battling with your state of mind  seek help (professional help if required). If your circumstances have changed due to chronic illness then you need support. Do not think that you can do it alone.This applies to all affected people, including the person who is unwell and their partner/family.

Paul S Allen

St Kilda Beach

Don’t Blame The Sick

You’ve been battling long term illness, well meaning people have suggested all sorts of remedies (supplements, medication, spiritual intervention, prayer) but what happens when people don’t get better or even get worse?

This is a list of things not to do.

Blame

  • Blaming yourself/others/God does you no good at all it just makes you angry and wastes precious energy.

Give up

  • Giving up should never be an option, while there is breath there is hope.

Become bitter

  • This is like drinking a poison cup, no matter how sweet it tastes it will destroy you.

Shut yourself off from the world

  • When you shut yourself off from the world you shut out the people who can support, comfort and encourage you

Guilt

  • Never allow feelings of guilt for being unwell

Is there a reason why people become sick?
Yes, but it may not be obvious, understood or discovered yet.

Is there a purpose to being chronically unwell?
I don’t know.

Does it mean a lack of faith if someone isn’t cured or healed?
Absolutely not.

Sometimes people are sick and will remain unwell. Why? We may never know.

Never blame the chronically ill for being ill.

No one should ever blame someone who is sick saying it’s their fault. What people with long term illnesses need beyond treatment is people who are prepared to take the good with the bad; to stand by and help when needed; to celebrate even the smallest victories and to help pick up the pieces when they have worse patches.

Do you know someone who has a long term illness? why not contact them over the next few days to check how they are, visit if it is appropriate and they are able to handle it. Be there for them without blame, or criticism, be there as a true friend.

This is our story of living with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)

©Paul S Allen 2010

Living With M.E.

Living With M.E.

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a complex illness affecting multiple systems of the body and, in particular, the nervous and immune systems.

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?

Fade Away - ME/CFS

It is currently incurable, although there is great research being done around the world especially at the Whittemore Peterson Institute for Neuro Immune Disease in the USA.

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.

In many countries including New Zealand, Australia, Canada and others blood donation from people with ME/CFS has been banned due to the possibility of the presence of a retro-virus (XMRV).

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, the ability to have children (we can’t), community involvements stop.

There can be a feeling of isolation as the world evolves 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, 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, 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.

© Paul S Allen 2010

ME/CFS Support

ME/CFS Awareness 2009

ME/CFS Awareness 2009

I have seen first hand a very active person (my wife) who was committed to community life and to work become 11 years ago, at first, bed ridden and still all these years later still not able to even consider regular involvement in any activity.

As a supporter of someone with ME/CFS I have seen her have very bad days and not as bad days.

One thing we decided early that we needed to budget energy like money, that is you can only spend it once, and there is no saving scheme.

I have become aware of the issues that people with chronic illness face but because I have never experienced the debilitating effects myself I can only offer support and not direct sympathy as to what the condition is like.

What is strange is that I am part of a community that knows me as a man alone and not part of a couple, because she has not been by my side for the last 11 years at meetings, Church and other social events etc.

There is still a lack of awareness and understanding of people with ME/CFS and although people mean well very few actually commit to long term support of both the person with the illness or the support for the family of the affected person.

Although people see her with a smile on her face they don’t see the weary person behind the mask, they often say “your looking well” but she knows how she is really feeling.

As much as we try to explain what the condition is like people are generally to busy to take notice and sometimes the saying “out of sight out of mind” is so true.

I think it is time to raise the awareness of this condition, not for sympathy but for understanding and support physically, emotionally and spiritually for people with ME/CFS.

Paul S Allen

May 2009

Paul Allen

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