Tag Archives: quality of life

First Person Accounts About What It’s Like To Live With M.E.

Well-known law prof battles stigma of chronic fatigue syndrome by going public

For many who suffer from chronic fatigue syndrome, stigma is the worst aspect of the illness.

People suffering from the syndrome, also known as myalgic encephalomyelitis [M.E.], have been treated as malingerers and met with disbelief, according to Northwestern University law professor Steven Lubet. Many have been referred to psychiatrists.

“I am often essentially immobile, with other debilitating symptoms as well,” Lubet writes. “On days when no one sees or hears from me, it is most likely because I am housebound or bedbound. Sometimes it is impossible to manage the keyboard.”

All my fellow bloggers who follow this blog, are aware that I advocate for M.E. (Myalgic Encephalomyelitis).  When I come across, in my internet wanderings, some information that I believe will help others to understand what life is like when suffering with this chronic illness, I am forced to share it.

blue ribbon for me

I was struck by the “true-to-life” commentary by an M.E. patient, known as “Carol.”  She tells what her life is like since she came down with Myalgic Encephalomyelitis (M.E.).  After reading her comment at the bottom of the article, I decided to post it here.  It shows what the quality of life (QOL) is like when a patient lives with M.E. and includes family and friend relationships:

It is appreciated when anyone with a higher profile [Prof. Lubet] speaks out in regard to their experience with me/cfs. I so relate to the point about not being seen for a day or so because of being bedridden or homebound. It’s a delicate balance of coping, energy reserving, and prioritizing. I too acquired this illness in 2006, diagnosed by Dr. Bruce Carruthers in 2007. Up until now I have reserved most of my energy to work a week on week off jobshare but it is becoming more and more difficult. I see my house becoming more and more cluttered as I no longer have any energy to do even the important ( to me) tasks around the house. We eat out more often and I am less and less motivated to find something different to wear to work or make sure my nails are “done”. To the general public or unenlightened physicians this may seem like symptoms of depression, however I know that it really is just a lack of energy. Does anyone else have mental desires to do things but just cannot physically do them ? Support is always lacking, some friends and family have been pretty good, others that think you should be cured by now.. but there are some family that think I just don’t look after myself and that I suffer from depression. Very frustrating when I try to explain the difference as they claim to have read up about me/cfs and declare that I am just making excuses for not seeking a psychologist/medication to treat my “depression”. One of my children has chosen to “detach” from me because they just find me too negative ( because there are things I cannot do ) and an excuse maker. That my sometimes garbled words or poor memory just make me unlovable “until” I choose to seek help for my “problem”.

 

[Image from bingdotcom]

 

45 Life Lessons

What a wonderful list of life lessons. Just had to pass it along!

Kindness Blog

45 Life Lessons

by Regina Brett

life-lessons

1. Life isn’t fair, but it’s still good.
2. When in doubt, just take the next small step.
3. Life is too short not to enjoy it.
4. Your job won’t take care of you when you are sick. Your friends and family will.
5. Don’t buy stuff you don’t need.
6. You don’t have to win every argument. Stay true to yourself.
7. Cry with someone. It’s more healing than crying alone.
8. It’s OK to get angry with God. He can take it.
9. Save for things that matter.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won’t screw up the present.
12. It’s OK to let your children see you cry.
13. Don’t compare your life to others. You have no idea what their journey is all about.
14. If a relationship…

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My 6th Letter to President Barak Obama

Today, I mailed my sixth letter to President Obama, regarding advocacy for M.E. (myalgic encephalomyelitis).  In this letter, I quoted an excerpt from an M.E. sufferer who lives in the UK.  Her name is: Hayley-Eszti and by clicking on her name, you will be taken to her blog.

Here is the latest letter to the President:

Dear Mr. President;
Yesterday, I celebrated another birthday, and gratefully, have enjoyed a healthy life: however, there are too many people in this United States of America and in the world who, through no fault of their own, suffer pain and weakness.

My focus and advocacy is M.E. (myalgic encephalomyelitis). My daughter is one who suffers from the “invisible” disease that shows no outward signs of illness in sufferers; however, their lives are so affected as to have them cut short. Yes, some die, but the majority of the more than 1 million patients in the US and between 17 and 20 million globally, are relegated to house or bed, or have their quality of life diminished so that, in order to perform a daily task that would be “normal” and taken for granted by most people, performing simple tasks will force them to bed to “recover” from increased bodily pain and great abnormal fatigue.

Below are quotes from a blog, written in honor of International M.E. Week (May 12th), by a lovely 22-year-old UK patient who describes herself as a “bargain hunter/professional sleeper/lover of patterned trousers”:

“M.E. dominates every part of my life and I blog about my journey towards (hopeful) recovery and how I am trying to live a normal(ish) life whilst being a full time ill person. M.E is an illness that leaves a lot of people needing wheelchairs, but they aren’t permanently disabled which can leave a lot of sufferers being accused of faking their disability. Not all disabled people are permanent wheelchair users, and not all disabled people necessarily even use wheelchairs. The sooner that misconception is demolished the better.

Sufferers can (as long as they are well enough to get out of bed) hide those black eyes, put foundation on their pale grey skin, put clothes on, and smile as if nothing is wrong. Weeks prior to a trip out, are normally spent at home resting and preparing just for a few hours of normality, and weeks are spent in pain recovering from that one afternoon too. I think that is why a lot of people underestimate the severity of the illness – the real extent of it is almost never seen. M.E is alive inside of me, but the real me inside is just about surviving; she is definitely not living.”

Mr. Obama, please communicate with the HHS and Ms. Sebelius, letting her know that research to find a cure is important for these sufferers. First, the Canadian Consensus Criteria should be the US accepted diagnosis criteria. The illegal IOM contract to decide a diagnosis criteria is a waste of taxpayers’ money, when there is accepted criteria already. How can members of the panel, who are not experts on M.E., be chosen to decide such an important issue?

Did you know that there are the approximately same number of AIDS victims as there are M.E. patients in the US?  M.E. leaves the patients too weak, and they cannot advocate for themselves; hence, we, who are fortunately healthy and who care for our beautiful children, must do our best to raise our voices.

With Sincerest Wishes,