There is no such thing as “waiting for the week-end” when you have a chronic illness

In talking with a friend who was planning some week-end activities, it suddenly occurred to me that I never planned something for the week-ends anymore. Nor for that matter did I plan anything, except for doctors’ appointments.

The more I thought about it, the more I realized that I plan my day only when it has arrived so I know what I have to work with that day. My days are either good days, that means I have a bit of time to do something before I must lie down, or bad days where I try to conserve what energy I can to just cope with the day. On that day you do not plan anything, but try to cope as best you can.

It is not only that you cannot plan because of the unpredictable nature of ME/CFS but it is stressful. If for some unforeseen reason you must commit to a certain date, which is especially true for celebrations, that becomes a double whammy of stress. Now you have to think about not only that day but how long it will be. Is there a place to rest or is the company such that it would be awkward to ask to lie down.

We are all aware of this of course but we do not normally dwell on why. We just adapt to our new way of life. I hadn’t realized that I do not plan to do something special on the week-end. I used to do that when I worked and was home for the week-end. At that time I could be relatively sure that I would be ready and able to do whatever it is I wanted to do. How I took that for granted. How lucky people are who still fall in that category and think nothing of making schedules for their week-ends, holidays and vacations. They do not even take their health into consideration at all!

Vacations cause an entirely different stress level. If you have a family and you don’t go along on the vacation, it might mean that you mess it up for the whole family. If they go without you, they will feel guilty. If you go with your family they will be pleased but now you are stressed. You try to participate so as not to spoil their fun and do more than your energy and health allows. You have the worry of wondering whether you are able to last the event. Even if you do, your chances of not having a crash afterwards are slim.

I thought I would write about it as I know I am not the only one who feels like that. I am finally at the stage myself where it does not stress me out as much for most events with my family. However, if it is an event that involves other people I am not so familiar with, by the time the day comes, I have imagined a million scenarios about what could go wrong. As I do not tell others outside our immediate circle of having ME/CFS, it means I have to find excuses to cover any short-comings I might face on that day. For instance, this week I had to do a TV interview which I had known about for about a week. It was set for 10:30 am. That meant that was all I did that day. Before the interview, to preserve my strength and after the interview to recoup. I managed not to crash for that one.

I am one of those people who, when a thought occurs in my head, it will go around and around until I write it down and see it in black and white.It helps to get rid of items that I merely have to acknowledge. Writing it down takes the place of having to tell somebody. That is why I also wrote my story, Between You and M.E. That one was a tough one as to relate it, it was necessary to go back in the past and relive it. It took time and the courage to deal with the history but it was a relief once I had written it down.

By looking over what I have written, I realized how much strength and determination we have developed to make up for what we have in short supply, our health.

Lydia
8/8/17

RELYING ON YOUR INITIAL DIAGNOSIS CAN BE DANGEROUS.

RELYING ON YOUR INITIAL DIAGNOSIS CAN BE DANGEROUS.

In the past few months, I was reminded again how important it is that when you experience a new symptom, all avenues are explored before concluding your illness has added a new symptom.

I just lost a friend who for the past year was going to doctors for an ever-present headache. As she had been diagnosed previously, not much was made of her new symptoms and no tests were done. Finally, her heaches were so severe she was rushed to the hospital where tests were finally made. It was a dire diagnosis and her family was told she had only weeks to live. Tests indicated brain and stomach cancer but it was so advanced, there was nothing that could be done. Four days later she passed away.

Another friend of mine has had Lupus since she was a teenager. She is used to the flare ups and saw her rheumatologist on a regular basis. She then started having problems with her energy levels to such a degree that she was spending more time sleeping than staying awake. Her rheumatologist advised her that her Lupus was acting up and she would get over it.
Fortunately for her, the Rheumatologist retired and she got to see a replacement. When she related what had been happening to her, he immediately sent her for tests for her kidneys as well as her heart. Her heart turned out to be the culprit and without intervention she would have been dead in a few months.

Although these were extreme cases, there is also the possibility that a new symptom may be treatable and relying upon it being related to your present illness or condition may obscure any chance of getting relief.

It is important to remember that no matter what illness you have, it does not make you immune from getting anything else. To be safe, first get the new symptom checked out. Neither you or your doctor should feel confident that it is related to your present condition or illness.

Lydia
November 16, 2015

The Forgotten’s Story

Dear Friends:

We have our first story written by a husband whose wife is ill. We get to listen to what it must be like to have someone who is chronically ill. I hope this opens up the door to others also participating as it is only through communication that wounds can be healed.

Lydia

NATUROPATHY

Dear Friends:
In Edith’s Story she relates how both medical doctors and naturopaths helped her to get better. I would like to hear from others who have had experiences with both and what has helped.
Email me at Lydia@mefmaction.com</stro Continue reading

ARE YOU COPING?

Dear Friends:

Do you have a loved one in your life who is ill with ME/CFS and/or FM? Do you feel sometimes so overwhelmed that you want to run away and hide? When you care for a loved one who is ill, it sometimes seems that everyone is living their life around the sick person and their own lives are put on hold.

This is your chance to tell your story. As no one lets the ill person know how they are feeling, resentment can fester and eventually turn everyone’s life upside down. Take this opportunity to share your story so that we may know what it must be like to live with someone whose life has been put on hold and also has changed the lives of those around them.

The more we understand the feelings of others, the better we can cope and don’t let resentment stand in the way of a quality of life.

Please let me hear from you.

Email me at: lydia@mefmaction.com

Lydia

CHILDREN & YOUNG ADULTS

Hi There:

Have you got ME/CFS and/or FM? Have you ever thought about writing down how your are feeling and what you are thinking? Here is a chance to tell your story. You may think there is no one else who feels like you do or is not overwhelmed by the different emotions you are struggling with.

You are having difficulty coping in school or you are not able to attend school at all. This can be a very lonely and isolating time and it feels like others are moving on while you are stuck in a time warp.

I want to hear from you so let me know how you are doing and feeling. There are others who know what you are going through so please share your story so that they too will get the courage to speak and take comfort in knowing they are not alone. .

Email me at lydia@mefmaction.com

Lydia

Unheard Voices: The Forgotten

>UNHEARD VOICES: THE FORGOTTEN

FIRST OF ALL: WRITE ME AT lydia@mefmaction.com

In addition to Unheard Voices: My Story for those who are ill with ME/CFS and/or FM, I am also accepting stories from those who are living and/or acquainted with the person who is ill. They too deserve to be heard. Please pass on this message to those who would like to tell their story and remind them that their name and intimate information identifying them is not used or displayed on the website.

This is their chance to be heard and by seeing their stories, it will help those ill and those who know them. By understanding both sides, there is a chance to do more healing and get a better relationship which will benefit all.

Email me at lydia@mefmaction.com

Lydia

Tell your story

Dear Friends:

Some of you have written asking what your story should consist of and what length the articles can be. I have written down some answers some of you have asked:

  • Your Story can be any length;
  • You can write about a specific incident that occurred that has affected you;
  • You can write about when you first became ill and how you coped;
  • You can also write a poem instead;
  • There is no deadline for your Story;
  • Although you have to identify yourself to me for authenticity, we only publish as much of your identity as you are comfortable with;
  • You can use a pseudonym;
  • No one will be identified by name;
  • If you do not have a computer, writing by hand is fine and I will type it for you;
  • You can email me at lydia@mefmaction.com;
  • You can send your story by landmail at
  • #512 – 33 Banner Road, Nepean, Ontario K2H 8V7 CANADA;
  • You can fax it to me at 613-829-8518

What is important is that you have a chance to tell your story.

Take care

Lydia

Your story is unique

YOUR STORY IS UNIQUE

Dear Friends:
I have been hearing from some of you who feel that their story is not different from others. You therefore feel that it isn’t worth sending it in. Quite the contrary. Your story is unique as it is yours. True, there may be similarities but that doesn’t make it any less worthwhile to let it be heard.

Remember if energy or writing stops you from spending much time on your writing, do not worry about what the content looks like. I will make sure it does you justice.
You do not need to write your whole story. If you wish you could relate a particular incident that has been bothering you for a long time. Chances are that it has also bothered someone else.

Take care,

Lydia