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

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About Paul S Allen

Musician (Guitar, Bass, Mandolin); Singer Song Writer; Photographer; Poet; Thinker. I have food allergies so ask when you invite me for dinner. Lumen accipe et imperti. (receive the light and pass it on) Leadership; Strategy; Vision;

Posted on 01/05/2010, in General, ME/CFS and tagged , , , , , . Bookmark the permalink. 25 Comments.

  1. Thanks for telling how it is – best wishes to you from another long-termer.

  2. Holding onto hope is my approach too. Thanks for the post and for sharing your story.

  3. Louise Stevens

    Summed up perfectly. I particularly latched onto the money analogy. After 12 years I finally started to listen to what my body was asking me to do, not what I felt I had a responsibility to do. I got an easier job, less hours (no more panic attacks about how I was going to get through the day) and for a while experienced the luxury of effortless days, something I once never thought was a possibility. It’s like winning the lottery after being poor. I have been frivolous and have enjoyed spending – I have spent my money on ironing the boys school shirts, pegging out the washing, filing my nails when I want, changing the bed linen, helping others, cleaning the house each weekend, going to watch my son play football, putting extra hours into my work simply because I could and wanted to do. I enjoyed it whilst it lasted, so much so that I ignored the warning signs and continued until I had the wake up call from the baliffs. It is now going to take a while to pay back the money. Money only lasts if invested wisely (just like M.E energy), it doesn’t pay to be frivolous for too long. Positive thought: I am richer in life experience and grow more with each thing learnt. Wishing us ‘greed free’ happiness.

    • Louise Stevens

      In my last reply it could be perceived that it is as simple as reducing workload that enables people with ME to feel better, we know it isn’t. So my apologies if I implied this.

      Yes at the start of the illness I continued to work one day a week in a fog, not sure how I was able to stand, make any sense, do simple filing,etc. It was all a blur, but I did it, paid for it all week and then went back for more punishment the next week. I was one of the luckier ones to be able to at least work.

      As I have seen small improvements over the years, I have increased my work hours trying to provide as much as I can for my family and have stubbornly continued on somehow but at my own daily minute by minute cost. I then decided to work a bit more to pay for supplements whilst on a strict food plan. I have now benefited from this and have stopped the supplements which is how I justify working less. My husband did point out that my enthusiasm brought on by my new found freedom is costing me health wise again – why work similar hours and get paid less, especially when he is frustrated that we don’t have the money to buy a car. So will I be able to learn from this recent relapse and get the balance right? As much as my family would love to have more money, I know they don’t want to see me struggle either. They have to learn to adapt too to the issues linked with the illness. I know my husband is feeling low about all this at the moment, he wishes he could get a better paid job, but I have learnt what brings true happiness and I wish he would appreciate what we have more rather than what we haven’t. I tell him that I hate being forgotten about, I don’t need to be left to rest always, it’s isolating, lonely. I need the family to keep popping their head round the door to say hello and include me. Its such a mammoth task to go to them. It’s difficult because I don’t want sympathy and to be looked at as if I’m in a sick bed. I want my husband to tell me how he feels and to stop being so private. Each year gets easier. My words and typing getting too mumbled, so time to stop.

      Keep your blog going, it is thought provoking and gives comfort.

      • Thanks Louise, there are so many issues related to ME/CFS of which the illness itself is only a part. The wider effects on the life of the family is just as important. As a husband to someone with ME I do have low points and it is important for “supporters” to have a support structure as well as the person with the illness.

        Balance is so important and it is not a standard measure it does change daily. What my wife can do today she may not be able to do tomorrow or next week. Balance for the person is more about listening to what your body and mind is saying and, as frustrating as it is, saying “no” to things that you know you can’t cope with. “Pushing it” does no favours and can lead to relapse.

        Thanks for your candid responce, and I pray that one day we can look back at these times only as a memory of the illness while living a normal healthy life.

        Paul S Allen

  4. Rachel Gamperle

    Thanks for this article you guys. It really helps me to understand better how this illness is affecting you both in your day to day lives.

  5. GOD BLESS U BOTH! YALL ARE IN MY PRAYERS! ANYTHING I CAN DO 2 HELP PLS PLS PLS JUS HOLLA AT ME! ILL DO MY BEST! I PROMISE! tell wifey i said “HELLO.. BE STRONG.. APART OF BEING ONE OF GODS GAVORITES IS BEIN THE DEVILA FAV 2!! NEVA LET HIM (DEVIL) BREAK U http://www.youtube.com/watch?v=DB2KfiHUBCs <<NEVA 2 LATE "3 DAYS GRACE" MY DEDICATION 2 U BOTH! make sure she hears that pls

  6. Thanks for that. I find it so hard to put into words what living with this illness is like. I’ve had it for 20 years as has another friend who also lives in NZ and there is never an end in sight. We just plod on from one day to the next, never making plans, taking each day as it comes as we have no other option. I find the clinical depression hardest to deal with and stress makes it and my overall condition so much worse.

    I’ve finally got a sleeping pill that actually works and does not give me a raging hangover. The sleep is not perfect but improved. At least now I sleep for more than 90 minutes!

    The only thing in the UK that is a constant source of irritation is the generation of GP’s who do not believe in ME/CFS and keep telling me to exercise more when it is the worst thing for me. Then these same GP’s go back to the benefits system and tell them I am fit for work when everyone else agrees I am not. It is an ongoing nightmare for me and many others in this country.

    Rosanne

  7. Kerry Dustin

    You just described life at our house. Wonderful article. I’ll be sending it to my husband and sharing the link. All the best to you both.

  8. Gillian Bingham

    Hi. What a great site. So good to hear that I’m not the only one!! I know it, but it’s good to feel empathy with others. This is the third time I’ve had chronic fatigue. The previous two times God has miraculously healed me. I’ve been able – after the healing, to do more than I could do before, and energy that has surpassed my expectations! This last time began with a very bad virus I picked up from the hospital whilst visiting a friend. It’s been over 9 mths now, and it’s not easy as I have a 10, 8, and 4 year old. My task every day is to drive them to school, then I get home and rest!!My husband is amazing, not only doing everything at home, but also taking the children out at the weekends in order to let me rest. The noise probably exhausts me more than anything. Anyway, what I really wanted to share is that God is my rock. My time with God has become the most important part of my day. I feel a closeness and a hope, and am trying to use my time to grow in Him. More recently I have been blessed with the gift of song writing. I can’t tell you how this has happened, but only that it is a gift from God. I can’t share these songs at the moment – I make church about once every couple of months, but I believe there will be a time. I see my time as if God is preparing me for what is to come. I really like what you said about focusing on what you can do. I don’t know how my muffled brain can produce songs, but I thank God for this gift, and look forward to a time when others will be blessed because of them. The time will come!!

  9. Lauren Rose

    cfs/me – I have suffered from this for many years and will soon be doing the Lightning Process, which has had astonishin g results for many people, including some I know personally. Please look at the websites of Phil Parker, who developed the process, and Heather Thomas, a practitioner I’ve spoken to in depth. I don’t know whether it’s available in NZ yet but it would be worth enquiring.
    Some people have had not-so-good experiences with it – so please look at the potential benefits, and positive testimonials, rather than being put off by those.
    A friend sent me a link to this post. I am glad you are doing this – cfs/me is so widely misunderstood – I am one of the people who has always looked fine while really struggling with depression and exhaustion….warmest wishes to you both, Lauren Rose (Ireland/UK0

    • Thanks Lauren

      I wish you all the best.

      I agree ME/CFS is very widely misunderstood around the world, we can all make a difference by educating those around us.

      Paul S Allen

    • Lauren Rose, please keep us informed how the Lighting Process worked for you. It is now in NZ and would like to try and get my son to Auckland for this.

  10. Janice Roseingrave

    Thanks for taking the time to share this story of CFS on the web. I have had it sine 1996 and are slowly getting worse with mixed connective tissue disease, lupus and other side effects of this illness. Perhaps if we all speak out, our lives may get a little easier and we become better understood, Thanks again and take care. janice

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