9. Living With M.E. & FM

1)** Coping With M.E. & F.M.  
This chapter discusses coping on a daily basis,
dealing with the problems that are a result of these
illnesses, and the frustrations of dealing with other
people.  Some sections deal with life issues.

2)** References 

     a)** #940806-35

     b)** Coping skills #93042- 2

3)** Diary for daily recording  of
activities.  The Daily Diary located at the back of
this manual can be photocopied and used for
whatever time frame you wish.  

     a)** In the columns at the top, beside
     "TIME", enter each symptom: brain
     function, mood, energy, sleepiness,
     headache, drugs taken, stress, edginess,
     nasal congestion, eye pain, muscle pain,
     joint pain, sore throat, tender glands, etc.

     b)** The rows below "TIME" can be
     entered in any unit that displays the
     information in the best possible way.  Each
     row could be equal to hours, days, weeks
     or months.  This is good for displaying to a
     specialist you see once a year, exactly how
     you have been doing.  Record each time
     frame when it occurs, don't try to put one
     year of recordings down in one day. 

     c)** The score of each symptom is kept
     under it's column across from the time it
     was recorded.  If a symptom is not
     bothering you at all, you would rate it as
     "Good" which is a "0"; if you are having
     an extremely difficult time with a
     symptom, it would get a "10".  This allows
     your doctor to see (by scanning the diary)
     that the higher the number, the worse you
     are doing.

     d)** The blank rows to the right are to
     record what you ate and any physical or
     mental activity you performed during this
     time.  This may help discover the reason
     for a flare up, like an allergy, that does not
     show up until the next day.

     e)** A personal medical record kit is free
     from the Pharmaceutical Association of
     Canada.  Phone 1-800-363-0203. 

4)**  Children and M.E. or F.M.  
Children of all ages have been diagnosed with
M.E. and F.M.  There are many articles in the
"M.E. & F.M. Library Materials" on this subject.
#940901-4  #94007-1; #950401.

     a)** The F.M. Network has a 60-page
     booklet on young people with F.M.
     available for $15.00 (95/06).

     b)**  Youth Campaign for CFIDS
     Awareness  (#940806-86 - CFIDS
     Chronicle) is a project organized by and for
     youth with M.E.  The goal is to empower
     youth through advocacy and education.

     c)** Diagnosis of F.M.  (#940502-3 - FM
     Forum Newsletter) has a good article for
     children and teenagers on dealing with a
     diagnosis of F.M.   The article also
     includes a section on how to deal with
     teachers, fellow students, and school.

     d)** Children with M.E. tend to have more
     abdominal and intestinal problems than
     adults, as well as higher bursts of energy
     levels corresponding with more severe tired
     spells.  (#93052 Video4 @ 2:59) (Dr.
     Charles Lapp).

     e)**  For information on children with
     M.E. call The CFIDS Association 
     (#1-900-896-2343).  This service is
     described on the last page of all CFIDS
     Chronicle issues.

     f)** Other than the above references, I
     have read very little about treating the
     illness differently in children than in adults.

5)** Support from the community .

     a)  Contact your local Chamber of
     Commerce for a listing of all the
     community groups in your area, eg
     Kiwanis, Kinsmen, etc.  These groups
     provide a variety of support  - electric
     wheel-chairs, lifts, and housing.

     b) Church or Club Gatherings.  If you
     belong to a church or a club, see whether
     they may have financial help available for
     you.  Sometimes they will support you and
     your family in other ways, such as mowing
     lawns or bringing meals.  You are a part of
     the group, ask for support.

6)** Computers save your energy . 
You can purchase older computers for under
$1,000 that are still very useful with the older
software to run them, and are quite easy to
understand (used computers can be found in the
Buy & Sell, or the classified section of the local
newspaper). This will help with regard to
composing letters and keeping yourself organized,
not to mention being of use to your children or
your spouse and friends.  You can ask your
healthy spouse or friends to do work on that
computer.  You might try to arrange to borrow
their services on their computer if you are not able
to get one for yourself.  Most libraries now let you
have access to computers and printers for your
word-processing use, as well as Internet access.

7)** Clinics  for Overall Dealing Of Your
Illness.  There are a number of clinics devoted to
helping you deal with all the aspects of M.E. &
F.M.   These clinics give you a realistic approach
to dealing with the illnesses, helping in such areas
as drugs, vitamins, family, coping skills,
psychological problems, etc.

     a)** Arthritis Centre on West 10th,
     Vancouver, B.C.;

     b)** Lion's Gate Hospital, Vancouver,
     B.C. (Fee of $185) (Phone #988- 3131)
     #94018-2;

     c)** Okanagan - Kelowna or Penticton;

     d)** White Rock Peace Arch Hospital 
     (#531-5512); Mr. Trottman runs the clinic,
     and deals with overall management of your
     condition;

     e)** Holy Family (Vancouver) #93038-2 

     f)** St. Paul's Hospital (Vancouver)

     g)** GF Strong (Vancouver)

8)** Credit Rating .  When people
suddenly have a serious illness, they can have
financial difficulties.  As a result, sometimes your
credit rating will be damaged.  The Credit Bureau
(1-800-565-5390) will mail you a copy of your
credit bureau report, the same information that is
given to any authorized business or bank.  You
have the right to have things added or deleted from
your credit file (eg good things may not have been
recorded - a well-paying job of yours or your
spouse should be inserted now to ensure the best
possible information). 

9)** Employment during your illness 
and recovery. (#92056 Video3 @ 4:10)

     a)** Illness in remission.  If you are feeling
     quite a bit better, do not say you are cured;
     rather say your illness is in remission
     (similar to cancer or M.S.) 

     b)** If you are starting to feel better,
     remember that you have cut way back on
     the activities you were normally doing
     before you became ill.  If you return to the
     same lifestyle as before, you may find you
     are unable to carry out your duties.  This is
     especially important for people who try to
     go back to work too soon.  {PO}{I feel that
     anyone with this illness, even when they
     feel partially "cured", should spend at least
     a year doing various physical and mental
     activities in preparation for returning to
     work.  You then avoid the common
     occurrence of "I tried to go back to work,
     but after 2 or 3 weeks, I just couldn't
     handle it."}

     c)** Going back to work.  Plan your
     strategy for deciding what job and what
     amount of work you can do per week.  You
     have drastically reduced your lifestyle, as
     well as the responsibilities of mental or
     physical activities while you were ill; you
     may be shocked to realize when you go
     back to your former job that you are unable
     to cope with the same responsibilities as
     before. 

     d)** Know your rights with regards to
     short and long-term disability benefits
     (when you first get sick, or when you go
     back to work), if you are unable to carry
     out your responsibilities any more.

     e)** It is better to go on short or long-term
     disability benefits, then to continue pushing
     yourself to go to work, ruin your health,
     and get fired  from your job because of
     poor performance, and then left to feel like
     a failure.

     f)** After a diagnosis of M.E. or F.M. has
     been made, inform your employer that you
     have an illness, and that you require special
     consideration in order to carry out your job
     duties ("just like cancer").  This makes it
     more difficult for an employer to terminate
     your employment by stating that you were
     a poor performer, rather than the illness
     being the cause.

     g)** Things that may be flexible are:

          (1)** working hours - maybe go
          part-time;

          (2)** extended deadlines;

          (3)** more frequent breaks;

          (4)** doing work at home, or
          having a connection with a
          computer at home.

     h)** Let your co-workers know what is
     going on - hand out pamphlets, so that they
     know this is a legitimate illness and they
     become aware of how disabled you are.

     i)** Don't quit your job because of your
     illness.  {PO}{From what I have
     encountered in the support groups, NEVER
     quit your job if you are too ill.  Instead, go
     on short or long-term disability, if you
     have the option.  Ask your employer to
     change the preceding options if you are not
     able to go on disability insurance.   Keep
     your pride and let them terminate you.  If it
     goes to a legal case, it looks much better
     that you "wanted" to work but the
     "uncaring" company fired you.}

     j)** Starting Your Own Business.  If you
     are semi-recovered but may not be able to
     go back to work fulltime, or you may have
     an employer who will not give you the
     flexibility you need, you do have options. 
     If you are on GAIN or UIC, they will
     extend your benefits for one year to assist
     you and get your own business (or home
     business) started. 

10) Family and Friends.   You may have
difficulty dealing with family and friends,
convincing them that you have a disability.
Information in the "M.E. & F.M. Library
Materials" will help you deal with this problem.

     a) Separate bed or bedrooms.  Remember it
     is hard on the spouse that doesn't have this
     illness.   It is even worse if they have to
     cope with very little sleep themselves.

     b) For those who do not believe in the
     magnitude of this illness, have them call
     M.E.B.C. and listen to the list of 37
     support groups in B.C.  They might then
     realize how many others there are with this
     illness.

     c)** Relationships - how to help.
     #941004-4  (Grade A).

     d)** Fence sitters.  You will notice three
     types of friends:

          (1)** The greatest friends to have,
          (but the smallest group) are those
          who believe you, support you, and
          offer help. 

          (2)** Those who don't believe you,
          and who verbally say they don't
          believe you. This is probably the
          2nd largest group.

          (3)** The largest group are the
          fence sitters.  These people will say
          "Yes, we believe you", but their
          actions tell you that they may not. 
          These friends gradually drift away. 
          {PO}{I believe this category to be
          the most dangerous.  They are the
          ones who you don't really know
          what they think or will do. For
          these types of people, I believe the
          direct approach is the best.  A direct
          question to their face - "Do you
          believe I have an illness, yes or
          no?"  If the answer is yes, then a
          statement could follow: "This is
          how I would expect to be treated by
          you."}

     e)**  A good video to watch is the David
     Suzuki video tape "The Nature of Things"
     (#92002 Video1 @ 0:0). This program was
     the most popular and requested show in the
     25 year history of David Suzuki and "The
     Nature of Things".

     f)** You will have great difficulty
     convincing some people with regard to the
     seriousness of your illness; and you should
     not make it your life's ambition. Do what
     you can, then drop it.  There is no point in
     staying with friends or family if they
     ridicule you - don't associate with them.
     {PO} {"Sticks and stones may break my
     bones but words can kill me".  It's called
     suicide.  The rate is high for M.E. & F.M.
     patients.}

     g)** Be convincing.  If you have a
     diagnosis of M.E. or F.M., and have been
     thoroughly tested for other illnesses, take
     the diagnosis seriously.  Be convincing
     when telling others what's wrong with you
     - don't sit on the fence - others will only
     magnify your disbelief.

     h)**  Family members can help.  Try to get
     your family members to help out in various
     ways - your children can wash the dishes or 
     cut the lawn.  {PO}{If your children were
     living on a farm, everyone would say it is
     great character building if they have chores
     to do; I think the same goes if you live on a
     farm or in the city}.

     i)** There are summer camps available at
     low fees provided by Community Services,
     church groups, and sports organizations (eg
     Soccer schools); these will allow your
     children to have a fun time and give you
     relief during the summer season.

11)** Meal preparation.   Many people
find they spend more time thinking about meal
preparations, than on the actual preparations.  

     a)** Make a list of all meals that you can
     think of, and divide them into categories -
     eg  hamburger, roasts, BBQ, quick, and
     long-time preparation.

     b)** Using this list, plan a 2-week menu,
     making it flexible for when your spouse or
     children can help out.

     c)** Organize a 2-week grocery list so that
     you can avoid wasting energy by having to
     go shopping so often.

     d)** Make large quantities of bigger meals
     and then freeze them  (uncooked, like
     lasagna) to be used at a later time.  A good
     example is  spaghetti sauce - it freezes well
     and you can use it for spaghetti/lasagna/
     pasta/chili.  

     e)Kids can help while you supervise, sitting
     in a chair.

     f)Make use of tinned, frozen, and ready-to-
     eat meals.  These can be nutritious, cheap
     and save you energy. 

12) Plan, pace and prioritize yourself


     a) Keep a three-ring binder for organizing
     what must be done,  with sections such as
     "Doctors - Questions, Information, Drugs
     Taken; U.I.C.; Insurance; Canada Pension"

     b)** Pharmacies have plastic dispensers
     that hold your daily pill requirement in
     separate compartments for a week's period
     of time.  You can put all your pills out for
     an entire week and see at a glance whether
     you have taken them correctly.

     c)**  When dealing with people (eg UIC,
     doctors, CPP) write in your three-ring
     binder the person's name, phone number,
     summarize what has happened, so that
     (because of your bad memory) you will not
     forget when you are asked about it later.  A
     special point is drugs - people tend to have
     taken various drugs but do not remember
     what effects these had, or the strengths of
     the drugs taken.  You can get a
     computerized list of all the drugs you have
     been prescribed over the previous two
     years from your pharmacist, which may
     help your doctor in treatment.

     d)** Invest in a Daily Planner
     (computerized would be great).

     e)** Organize what has to be done during
     the day, week, month, or year.  Try to
     avoid wasting energy.  If you have a
     computer, keep a running list of jobs that
     need to be done (around the house, etc). 
     Put a priority number beside them and then
     sort that list.  This way you don't have to
     keep rewriting it, you know what priorities
     should be next and you don't have to
     remember them.

     f)**  Pace yourself.  Divide up work time
     and rest time into intervals, e.g. do l0
     minutes of work and 50 minutes of laying
     down, or l0 minutes of work and 2 hours
     of laying down. Avoid doing too much all
     at once, since then you get exhausted and
     don't get anything accomplished.  Avoid
     rushing to do many things if you do get a
     spurt of energy, because you will only pay
     for it later.  Many M.E. & F.M. patients
     say they will take a rest, or stop what they
     are doing, at the first sign of tiredness. 
     However, they usually find that their limit
     was in reality much earlier than what they
     thought, and they suffer because they over-
     extended themselves.

          (1)** Plan ways to conserve your
          energy.  Scooters can be rented to
          go to the PNE; most malls now
          have them available for shopping
          convenience; a walking cane might
          also improve your balance.

          (2)** Cruise Control.  Most M.E.
          patients have difficulty driving. 
          One way to cut down the stress of
          driving is to have a cruise control
          installed ($145 installed at Canadian
          Tire or Sears).

     g)** Magic Cure.  Don't spend a life-time
     searching for the magic cure or cause. 
     Instead, try to find some help for your
     symptoms; get on with living your life, as
     it now has changed.

          (1)** Avoid going overboard by
          thinking the carpets, or milk, or
          yeast, or allergies is the entire cause
          of your problems, or that mega-
          doses of something will cure you. 
          Almost all of the cases I have seen
          of people trying this, they end up
          frustrating themselves or spending a
          lot of money to look for a cure that
          doesn't exist.

     h)** Invest in a reclining chair; you can try
     to claim it on your income tax return as a
     medical expense (necessity).  You can also
     try to deduct the fees for a fitness club. 
     "Fitness program, recommended by a
     doctor".  This has been done successfully.

     i)**  If you have problems with reading,
     you can get books on cassette tape
     (including the Bible) from the library,
     watch T.V. with a remote controller and a
     VCR - that way you can tape the evening
     shows that you like, and watch during the
     day when viewing selection might be
     poorer.

     j)** Reduce and plan your workload.  Look
     for items that you can be creative with (eg
     instead of doing the dishes after every
     meal, pile the dirty dishes in a basket
     below the sink, then when your kids get
     back from school, have them to do the
     day's dishes at that time).

     k)** Yellow pages. If you are purchasing a
     particular item, but don't know which store
     carries it, don't wear yourself out by
     walking around to the various stores.  Use
     your phone to find out prices, availability,
     and whether or not the items can be
     delivered to your home.  Your pharmacy
     can also prepare a refill to your
     prescription ahead of time with a phone
     call, so that you don't have to wait around
     for the 20 minutes for them to fill it. 

     l)** Consumer Reports Magazine reviews
     many major consumer purchases.  The
     magazine is usually available in the library. 
     They have an annual guidebook that
     summarizes the previous year's research,
     classifying what to look for and what each
     individual product's strengths and
     weaknesses are (eg air cleaners, water
     filters, air conditioners, cars, tires, etc.) 
     You might try to look through this before
     you walk around in various stores.  The
     magazine also has a full-page listing of
     1-800 numbers for brand-name companies.

13)** Phone Equipment.  You can buy a
good-quality speaker phone for under $50 at
London Drugs, or headsets and microphone so that
you don't have to hold onto a heavy handset when
you speak on the phone.

14)** Pregnancy.   #93006-12

     a)Before getting pregnant, wait till the
     symptoms subside to at least a tolerable
     level.  Dealing with a newborn is stressful
     enough for mother and baby. 

15)** The Resource Phone Line for
B.C. Handicapped  is #1-800-742-1820 - they
may give you further ideas.

16)** School.  Many grade schools,
colleges & universities have special programs for
students with disabilities.  UBC has a package of
specific programs for disabled people.  

     a)** There may be a discounted rate for
     tuition fees.

     b)** You can have special things done for
     you, such as tape recording of notes,
     changing times for an exam, recording of
     classes that you were not able to attend,
     etc.  Ask the school what they will do for
     you as a disabled person.  You are disabled
     - get the proper education as a disabled
     person.

     c)** You might be assigned a person for
     note taking during class.

     d)** Especially for grade school, you (or
     your child) can get a special time set aside
     to write exams by yourself (themselves),
     which might be less stressful.

     e)** They may allow you the use of a
     computer.

17)** Suicide .  No one dies from AIDS,
they die from complications from AIDS
(pneumonia, etc.)  When they die, we say they
passed away because of AIDS.  Some of the
symptoms of M.E. are confusion, physical and
mental depression, and extreme fatigue.  These
symptoms make living with the illness very
difficult.  A study that was done showed there is a
six-times higher rate of suicide for M.E. than the
general population.  {PO}{I feel the figures are
similar in "F.M. only" patients, although I have
not read any studies to show this}  There are many
people that have passed away from complications
of M.E. or F.M.   It was found that the majority
of patients who did commit suicide, did so because
of the heavy doses of anti-depressants and
tranquillizers taken at the same time.  Avoid this
combination.

     a)**Living Through Loss Society, through
     the United Way Agency, helps counselling
     for individuals and groups, has referral
     services and a reference library, will
     provide speakers and design workshops. 
     Phone #873-5013.

     b)** If you feel suicidal, please contact one
     of the Crisis Centres at:
     Delta - #273-8701
     Langley - #530-5385
     Lower Mainland - #437-3445
     Port Coquitlam - #931-5996
     Surrey - #588-0188
     Vancouver - #733-4111/ #879-9251
     North Shore Counselling #926-9495


18)** Things To Do.   

     a)** Bird Feeder.  Feed can be purchased
     at a bulk store;  different feed attracts
     different birds.

     b)**  Helping out your local support group
     or M.E.B.C.

     c)**  Light gardening.

     d)** Light reading.

     e)** Books on cassettes.

     f)** Check your local cablevision "Public
     Service Announcements", or the local
     newspaper "Public Service Announcement"
     section for ads on things to do, or attend,
     or for assistance (eg the Crisis Line, or a
     special speaker put on by another
     organization).

19)** Vacation Plans.  Trip cancellation
insurance and extra medical insurance is available
when travelling out of B.C. or Canada.  Take a
doctor's letter with you to the airport, to prove
that you have a disability and that you are eligible
for a disability discount.

     a)** Most airports provide extensive help
     for disabled people; instead of walking
     (literally) miles to or from your departure
     gate, most airports will, when given notice,
     pick you and your spouse up at the front
     gate, load your luggage, drive you in a cart
     to your gate, unload your luggage, give
     you premium first loading onto the plane,
     allow you to unload last, and provide you
     the same service out of the airport.  This
     makes a trip much more enjoyable, since
     you will not suffer because you walked too
     much, and lose 2-4 days of your holiday
     recuperating.

20)** Finances-how to get through
the tough times:  You can always ask, but
take a positive approach; people are generally kind
and compassionate.  Look through the "Disability
Benefits" chapter and apply for ones that you are
eligible for.

     a)** Delaying pay-back:

          (1)** Mortgage - ask the bank if
          you can postpone a payment, spread
          the missed one over several months,
          or add the missed onto the end of
          your mortgage;

          (2)** Payments - car, furniture - ask
          for a postponement;

          (3)** Rent - ask if it can be
          delayed;

          (4)** Take a cash advance or put
          purchases on your charge card,
          rather than use up your cash.  This
          allows you a month and a half to
          save up the money, before the
          payment is due.  The credit limit
          can be raised by $500 every 6
          months, with a call to the 1-800
          number for the card. Simply state
          you want a higher limit; if you go
          through the local branch they will
          ask you to fill out an application. 

          (5)** 2nd mortgage;

          (6)** Pawn shop;

          (7)** ICBC now allows payment of
          your car insurance through monthly
          installments, so you can eliminate a
          big payment.  They also have a
          payment plan (95/08).  You could
          cancel your prepaid insurance, get a
          refund, then go on payments.  A
          more cost-effective alternative is to
          take your yearly insurance cost,
          divide by twelve months, then have
          your bank automatically transfer
          this amount into an interest-bearing
          savings account each pay period. At
          the end of the year, you have your
          insurance cost paid without severe
          financial hardship. People have
          trouble saving - this method works
          without you remembering or feeling
          the loss of these funds.

     b)** Ways to get help that won't leave you
     in a financial bind later, and may not have
     to be paid back.

          (1)**Church or societies may help
          you out;

          (2)** Cut costs - eg cancel movie
          channel;

          (3)** Cancel insurance on your
          second car.  ICBC will send a
          refund in about one month.  

          (4)** Some agencies make a
          distinction between separation or
          divorce.  They group married and
          separated family incomes together
          as one, and divorced incomes
          separately.  I believe they think that
          as a separated couple, there is the
          possibility you may reconcile. 
          {PO}{Be cautious in the grey areas. 
          This may mean it would be
          financially beneficial to quickly get
          the divorce, then think about
          reconciliation.  This is just how
          screwy the government works
          sometimes.}

          (5)**  Income tax RRSP money
          back.  {PO}{On February 28, take a
          cash advance on your charge card,
          and buy your limit for an RRSP. 
          On June 2nd, cash the RRSP in, 
          withdraw the money in sections of
          $2,000 every week; the bank will
          withhold 10% for taxes.  You pay
          back the cash advance, fill in your
          previous year's income tax return
          claiming your RRSP contribution. 
          When you get your Income Tax
          cheque, you will receive (net) 20%
          - 40% of your RRSP limit in cash
          and you never pay that back. Next
          year, you do exactly the same thing. 
          Your new RRSP cancels the
          previous one.  It works -  and it is
          legal.  Starting  the 1995 taxation
          year you must leave the RRSP in
          for at least three months, and the
          banks have been asked if they see
          large withdrawals within the year,
          to withhold 20%, so make smaller
          ones. Before you use this option,
          check to see if there is a service
          charge for any RRSP withdrawals.} 

     c)** Tighten your Belt Now.  Don't rely
     on your disability insurance for continuing
     more that 2 - 3 years.  You insurance will
     probably only pay you 60% - 70% of your
     regular salary.  Most people (90%) lose
     their benefits after 3 years.  {PO}{Don't
     rely for CPP benefits to continue - I feel
     that the way the government is working,
     M.E. and F.M. patients will be one of the
     first to be "shuffled off" to save money.}

     d)** To Avoid the tough times.

          (1)** Start planning now.  Have
          your bank automatically transfer
          $25 per pay cheque into a savings
          account.  You will not notice that
          the money is gone, and you will not
          have to remember to transfer the
          money yourself.