October 2008

                                                                                                                         Vol. V, Issue #55

_qaatwrh[1]          Bergen ME/CFS-FM Support Group Newsletter

 

Meeting Report

The meeting was an open discussion of coping techniques.   It was enriched by some handouts created by two of our members.  It is included here for those who have not had the opportunity to see it in person.  Those present had an opportunity to discuss how each section pertained [or not] to him/her.

Coping with the Tough Issues

Personal Perceptions: (explain)

I.         Loss

1.                  Loss of Identity – Who am I now?

A.           I used to do more

B.           Loss of income

C.          No longer the breadwinner

D.          Loss of dreams – I planned to do…I planned to be…vacation dream was to go to…

E.           Who I was before – new people do not know who I was before

COPING STRATEGY:   Reinvent yourself – when you are ready to accept this is a chronic illness.  Work within your limitations, dream new dreams.  I know this is easier said than done, but in time you may be able to …

 

2.    Physical/Cognitive Loss

A.  Physical

1. Feel older than our years – feel like 65 instead of 45 (Invasion of the body snatchers)  I want my old body back.

2. No endurance – physically

B.  Cognitive

1. Brain fog

2.  Auditory process - conversation

3.  Challenged with reading/writing

4.  Loss of memory

3.  We are fragile physically, mentally, emotionally (self doubt)

C.  Illness changes from day to day (level of well being)

 

COPING STRATEGY:  Give your brain a rest as would your body. Must pace yourself both physically and mentally.  If you are having a bad day, wait for a good day.  Not every day is as bad as you are experiencing.

II.       Denial

1.    Hiding how you feel

2.    Pretend to others and self I am okay (I can do that!)

3.    Hoping to be smiling in the right spots during conversation, when not able to

4.    process information

5.    “How are you?”  Telling people you feel okay when you don’t

6.      I’ll be over it soon

7.     The doctors must have made a mistake“

8.     I must keep working… disability is for others…not for me

9.  If the doctors will just give me a pill, I’ll be better (wanting that magic silver bullet)

 

            COPING STRATEGY:  It is imperative to let other know your limitations.  This will help to validate your illness. It is important for you to set your own limits. Pace yourself.  Let others know you are not able, and need assistance.  As hard as this is for someone who has had an active life, it is very important to let others know that even though you don’t have outward signs of illness/disability, this illness is very limiting. When others ask “How are you feeling?” you may want to reply “Hanging in there.”

III.      Victim

A. Victim once, victim twice, etc. – As with many illnesses you feel a victim of the physical limitations, but in the case of ME/CFS/FM there are additional factors that repeatedly make you feel victimized.

1.   Victimized by the name – CFS – People hear the word fatigue and believe that they understand the illness to be “you’re tired”. Often they will say that they are tired too.  Just get over it or push on. 

2.  Victimized by doctors mistreating and also other medical staff

3.  Victim of mysterious illness: Not sure how you got this illness, better for others to believe that you must be responsible.  Too much stress, weak immune system, all in your head – you just can’t cope.  If the doctors’ can’t explain than people afraid they may also be vulnerable to this illness.

4.      We are the new lepers – doctors don’t want to treat us –

5.      Victim of an illness that has no home in the medical community: If you call a hospital and ask for a referral for CFS, don’t know which discipline to suggest.  Sometime rheumatology is suggested, but often these doctors don’t treat this.  Infectious disease doctors not inclined to support CFS because there is no blood test. 

6.      Victim of a multi-system illness: Your immune system, central nervous system, endocrine is affected.  Usually you work on the system that is giving you the most trouble – “symptom triage”. As a result you need to go to several doctors to treat you variety of symptoms. 

7.      Victim of an illness with no cure

8        Victim of an illness that no specific test to determine

9.      Victim of not being able to work, but at the same time you don’t look sick.

10. Victim of an illness with no outward signs of the illness.  You look fine.  Others may feel that since you look fine there must not be anything wrong with you.  As a result your physical complaints may go

 

COPING STRATEGY:  Be encourage to use ME not CFS for the name.  May also want to describe illness use fatigue as one symptom of the illness.   Do not waste your time on doctors that do not make an attempt this illness.  Do not waste your limited energy trying to defend this illness to a non-believing doctor. Try to get references for doctors who are sympathetic to ME/CFS.  Thursday doctors that have taken interest and helpful may want to read about them.

 

B.          Victim of Family and Friends who don’t understand or refuse to understand

      1.  “But you look fine to me!”  The illness is invisible.

2.   The “know-it ‘alls” who says, “If you just would get more exercise…. Change your

      diet….take herbs…or just push through it”. 

3.  You can’t be sick I need you to…..

 

COPING STRATEGY:  Do not take valuable energy to defend or convince others that this is a valid illness.  No one would believe this illness unless they had it. 

  

C.    Victim of “What do you do for a living?”  In this society, if you are not working, you are nothing…..you are dismissed.

 

Coping strategy:  When others ask what you do for a living may want to say “Medical condition prevents me from working at this time.”.  If you had an illness such as MS people have a level of understanding and acknowledge it is disabling and therefore have compassion and understanding.  Unfortunately, this is not the case with ME/CFS.

 

Those present felt it was an excellent tool.

 

In the News – ME/CFS

The Pediatric Case Definition

A Case Definition for Children with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Authors: Leonard A. Jason, Nicole Porter, Elizabeth Shelleby, David S. Bell, Charles W. Lapp, Kathy Rowe and Kenny De Meirleir

Publication Date: 11 Nov 2008

Clinical Medicine: Pediatrics 2008:1 53-57

This definition will hopefully help in the diagnostic process for ME/CFS in the child or adolescent.  It clarifies some of the differences between pediatric and adult onset ME/CFS.  It was first released in 2007 and has now been published in Clinical Medicine: Pediatrics 2008:1 53-57 Publication Date: 11 Nov 2008.  If you wish to view the document , it is available as a PDF download at http://www.la-press.com/article.php?article_id=1147It can also be found and in html format at http://74.125.45.104/search?q=cache:vb6bWDn0Sz0J:www.cfids-cab.org/MESA/Jason-1a.pdf+pediatric+cfs+case+defintion&hl=en&ct=clnk&cd=1&gl=us .

 

While the diagnostic process for adults can be long and very frustrating, it is even more so in the child. 

 

In the News 

If you like to laugh and to sing, go to this site to

http://www.geocities.com/HotSprings/1496/cfs38.htm

 

Surviving the Holidays

 

Birthdays & Christmases [or other Holidays. We recognize that our readers celebrate for many different reasons.] Excerpts from http://www.survivingsevereme.com/bdays.html by Claire Wade 2008

What makes a birthday or Christmas special is individual – it’s up to you to find something memorable. Here are a few ideas to start you off.

 Build up to the event slowly. Enjoy the preparations and don’t leave things to the last minute.

  • Order presents well in advance. Write Christmas cards in stages over the months leading up to December. You could even make your own cards or send e-cards.
  • Spread your Christmas and birthday over days or even weeks – make the event last as long as possible, spread out the enjoyment.
  • Don’t use a month’s energy in just one day; you’ll regret it later and any good memories will be replaced with bad ones.
  • Get other people to help open presents – brothers and sisters love this. Possibly get people to leave them unwrapped. Instead put them in pretty bags or use crepe/tissue paper and ribbons instead of sellotape [European for clear adhesive tape.]
  • Spread out opening presents. Don’t try and open them all at once, possibly opening them as they arrive and just leave presents from close family and friends for the actual day. You could have non-wrapped presents in a pretty box or bag and do a lucky dip whenever you feel up to it or are alone and bored.
  • Decorate the bedroom/living room with balloons, banners, streamers or anything that sparkles. Helium balloons from florists are good value because they last for a long time. For Christmas get a mini-tree available from garden centres and supermarkets. For a few weeks before you could help make the decorations e.g. paper chains
  • Include your friends by having a long distance party. Make up party bags to send out with a candle, a piece of cake or some chocolate, a balloon or some streamers. Alternatively have a spa day, send out face mask packs with a candle and possibly a herbal tea bag.
  • You could choose a theme for the day bringing it into your bedroom and party e.g. Caribbean, pirates, fairies, 60’s or 70’s. Enjoy the preparations!
  • Wear special/new pajamas/clothes, even if you have to change into them a few days before.

  • Get someone to paint your nails and maybe even wear a necklace or ring on the day.

  • Put your cards up around the room.
  • Get friends and family to record messages onto a tape if you are too ill for visits.

Food on the Day

·         Buy some pretty paper cups, plates and straws for using on the day.

·         Choose food you enjoy to eat, even if it is only your favourite chocolate bars or ice cream.   

  • A fun and easily swallowed cake is a Baked Alaska – ice cream covered with meringue baked in a sponge flan case. Candles can be put in this.

Some severely affected people may not want any celebration at all. This is up to the individual and they should not be pushed into doing something they don’t want to. This can be very hard for the family, especially if it is Christmas; but try to make the time special for everyone else, away from the severely affected person. Set aside periods to just sit with the severely affected person even if they aren’t taking part in the festivities.

With time they/you will begin to enjoy life again and take part in things the way they used to.

 

The contributors to this booklet are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.

No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author. Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.

 

Editors Note:  Please be cautious with things that have a fragrance.   For those with Multiple Chemical Sensitivity, fragrances and even the aroma of some things cooking can be an issue.

 

Next Meeting

The next meeting will be Sunday November 16th at the Ridgewood YMCA form 2-4 PM.  Our guest speaker will be Christine Clifton, a Personal and Life Coach.  Christine is a professional woman who left the corporate world when she acquired Fibromyalgia and Chronic Fatigue Syndrome.  She now coaches individuals and offers support group advice about issues relating to chronic illness.  Her presentation will focus on communicating with others, finding new sources of energy and happiness within yourself for a new direction in life, and coping with the challenges of isolation and rejection by friends and family.

 

 This newsletter is intended for CFS & FM patients in the area of this support group.  The purpose is to share information and support.  If you have questions about meetings please contact: Pat LaRosa at pat.njcfsa@larosas.net, Nancy Visocki at ngv.njcfsa@verizon.net, Judy Machacek at judymachacek@msn.com or leave a voice message at the NJCFSA Help Line 888-835-3677 during business hours.

 


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