RISING UP!
Living with A Chronic Illness
~Author: Monica "Eva" Waldman~
© 2002
No portion of this booklet may be used without the
EXPRESS WRITTEN PERMISSION of the author.
Sections:
1. - "Why ME?" and "Where do I go from here?" Your support system is vital now!
2. - Quality of Life Index and various factors which come into play
3. - Giving yourself permission to be angry & learning how to deal with and heal
your feelings!
4. - Blessings - We all have them.. You NEED to look deep inside to find them!
5. - Doctor/Patient Relationship
6. - Do NOT allow your illness to define who you are!
7. - Vital information for the caregiver
Please note that these writings are from my own personal experiences.
I have written this in the hope that some of my ideas and thoughts regarding
the above sections, will help you through some of your own experiences and day
to day living. I also realize that there are some chronic illnesses which are
more severe than others and there may not be items discussed here which would
be beneficial to you. I do hope though you'll be able to find something on
these pages which will be helpful in some way.
Introduction
Hello, my name is Eva,
I have been through my share of illnesses...
And so has my husband of over the passed 20 years.
Some of you have met me through my website and others have met me through
friends of friends.
I began my website two years into my illness. My husband won this computer in
1997 and I immediately got hooked up to the internet. I didn't know at that
time that the 'net would then open a whole new and wonderful world to me.
I surfed the 'net primarily searching for additional medical information
regarding my health. During this time I then learned of ICQ and met a few
people who were simply incredible! We got to know each other and we shared good
experiences and of course, the bad experiences as well. They learned of my
medical condition and because they were SO sweet and concerned about keeping my
spirits up they would forward me incredible url's filled with inspiration, love
and care!
By the time January, 1998 rolled around I was entering into year three of my
illness. I realized at this point that I NEEDED to find a place for myself
somewhere - A place where I could use my brain, my creativity, my humour and my
heart. I knew that I was not alone when it came to being ill, that there are a
lot of people out there who are also not well.
By late April '98 I had viewed many pages on the 'net which helped me get
through some very tough days. Days when I thought I could not smile.. Days when
I felt so much pain physically and emotionally, these pages brought me hope,
smiles and made me think about how very lucky I was in other aspects in my life.
These pages reminded me of how very blessed I was to have such a wonderful
family and the best friends in the world.
It was at that moment in late April when I decided to learn how to create a web
page. Up until we won the pc I had never used a computer in my life! I had a
number of pieces of writing which I could use and then on May 9, 1998 I created
"Eva's Place".
I had met a wonderful woman by the name of Nikki back in 1997 and I told her
about my page - I remember telling her .."If I can touch just one person... If I
can make just one person smile, think or see how blessed they are then I will
know that I have done something positive." The rest is history... That one page
turned into 100 pages and two more sites!
I took all of my negative energy and every ounce of strength I had and created
web pages, which then reversed the negativity into an amazing source of positive
and productive energy. I knew I had found a "place" for myself, a place where I
could help others find a little hope and peace for themselves. The feedback
astonished me! I cried when I read the comments people wrote in my guestbook.
I REALLY did make a difference... And because of their comments I felt that
there was a "reason" why I was meant to be at home, learn about web creation and
then put what I had learned to constructive use. Now this new found "place"...
"Eva's Place" became my second home and I never looked back again!
As of April 2000, I began to write "Rising Up". Usually when I write I really
never know why I am writing or what will end up on my pc screen. Anything and
everything I have ever written comes directly from my heart to try to help
others. That is the intention of "Rising Up"... I do hope after you have read
this it will shed some positive light into your life as a person with a chronic
illness or if you are a friend or a family member of someone who has a chronic
illness.
I would like to give a very special thank you to Christine Stich... an
incredibly strong and wonderful woman, for contributing some of her thoughts to
this booklet.
Eva :)
Section 1
"Why Me?"
"Where Do I go From Here?"
"Your support system is vital now!"
*During my times of suffering with a chronic illness I labeled my days. Not
just for myself, but also for the people around me to get a better understanding
of how I was feeling on "that" particular day. Not all of my days were filled
with physical/emotional pain, some days were better than others and some were so
bad that getting out of bed was not an option. Therefore I came up with the
words to best describe my day without having to go into the sometimes gruesome
details. (Please note: my so-called "good days" meant I could take a shower, go
for a short walk and then return to a sitting or laying down position.) I had
my "good days", "my bad days" and "my ugly days".
Two of the most common questions in the life a person living with a chronic
illness is first, "Why me?". There is no answer to that question and we know
that there is no answer, but we will ask it over and over again, especially on
our really "ugly days" because we feel so desperate for the reason why this is
happening to us.
We know that we are good people, that we have tried to do right in our
daily lives, we have tried to be the best we could be as human beings, but still
— Why?... Always that "why"...The people around us ask the same question and
still there is no concrete answer. Then of course there is the standard
statement...
"Why do bad things happen to good people?" Bad things do happen to bad people
too. I think it just so happens that we surround ourselves with good and decent
individuals who are much like we are, so we don't really see what happens in the
lives of the "bad" people of the world.
Perhaps somewhere down the road we will all learn the answer to the why.
The next question is "Where do I go from here?". There is often a period
of time between becoming ill and asking this particular question because there
are so many emotions one needs to deal with. One never really knows what path
destiny will take them when they first become sick.
One of the most intense of emotions which comes in to play is the
statement, "I feel worthless.." Often we feel we have been hit dead-on by a two
ton truck and we can no longer carry on the way we used to. Whether it be
holding down a job, parenting children, food shopping or going on vacation;
this list goes on. Our "normal" activities have been stripped from our life,
and we, who were quite independent, now have to rely on other's for help in our
daily or weekly routines.
What seemed so easy to do at one time, now has become a hardship and it's often
difficult, especially if you were a very independent person. If you led people
to think that you are strong, you can do it all yourself and rarely asked for
help, then everyone assumes that you have things "under control". In our time
of great need, in our time of turmoil, people are there to give a helping
hand... But we are the ones who have a very difficult time asking for assistance
because in some way, in the back of our minds, we feel as though we will appear
weak and needy.
Believe me, your partner, your real friends and family members who truly
love you for you, want you to ask for assistance. They too are feeling many of
the confused emotions you are feeling, and it saddens them. The support system
that you have in your life is very important; especially now when you need all
the unconditional love they have to offer.
One of the major problems which face people in our support system is the
feeling of helplessness. Often they are unsure of what is right to say or wrong
to say. They don't want to upset us because they know we are dealing with so
much already and they don't want to add any more stress or tension to our topsy
turvy world.
In the beginning, due to our confused emotions, we will take it out on the
people we feel most comfortable with.. Like the old saying "We always hurt the
ones we love". We let out an outpouring of our emotions in front of our loved
ones and completely button our lips in front of acquaintances. Why? Because we
know that our loved ones will understand what we are facing and let it roll off
their shoulders. They forgive us for lashing out at them because they know not
to take it personally and they will never ask for an apology. All of this is
because they truly love us and will stand by us always.
I must add this... Sometimes there are people who are not receiving support in
the most effective way. Some may not have family or friends. Others may have
them, but they may not understand what the person needs from them and offer
advice which isn't very helpful. If this is the case, finding a support group
for your specific condition is a good way to learn how other's are coping.
(i.e. exchanging ideas regarding medications (prescribed, over the counter,
alternative therapies etc.) -- As well, the chance to meet new people is often
very uplifting. You can find these groups by doing a search on the internet if
you wish to chat, or you can call hospitals or clinics regarding support groups
in your area.
Finding some good support books can be very helpful!
Suggested reading:
"Simple Abundance" by Sarah Ban Breathnach
"You Can Heal Your Body" and "You Can Heal Your Life" by Louis Hay.
This last book is a beautiful book visually, filled with a lot of pastel
colours, hearts, flowers, clouds etc....The writings inside are positive
affirmations and explanations about how some chronic illnesses can possibly be
brought on by our emotional state and how to change our negative thinking
patterns into positive ones. I am not saying that this is absolutely correct
that all illness comes from emotions, but, for some people, the words in this
particular book can help change depressing, sad thoughts into positive thoughts.
It won't take away the illness, but helps one deal with the illness.
Section 2
Quality of Life Index
And Factors Which Come into Play
When someone develops a chronic disease there are certain losses for the
sufferer. Depending on the severity of the disease the losses can be
significant or minimal.
- If you have a spouse, it can be difficult on them and sometimes the spouse
finds that they are unable to cope with your illness.
- Sufferers who do not have a partner find it more difficult to establish long
lasting relationships. Sometimes the disease may cause embarrassment due to the
type of illness, the inability to participate in certain activities, the
restrictions in diet or the energy levels are so low that certain activities may
be out of the question.
- Loss of independence. The necessity for other's to look after you. The loss
of control over your own life.
Quality of Life factors categorized:
PHYSICAL FACTORS:
fatigue
overall feeling of unwellness
feeling completely worn out
tiring easily
interrupted sleep patterns
weakness
EMOTIONAL FACTORS:
frustration
depression
discouragement
up coming doctor appointments, tests and their results, possible surgery
irritability
anger
anxiety
impatience
SOCIAL FACTORS:
unable to attend social functions
unable to play sports
unable to plan outings in advance
FUNCTIONAL FACTORS:
unable to attend work/school regularly
the necessity to stop work/school
difficulty in parenting
difficulty in doing housework/cooking/gardening/shopping etc.
FINANCIAL FACTORS:
hospital costs
testing costs
prescription costs
Your quality of life changes moderately or dramatically depending on the
severity of your illness.
Factors such as social, functional and financial tend to escalate the
emotional and physical factors.
You, your family and friends can all work together in a creative and
accommodating fashion to decrease this escalation.
When you feel tired, worn out, fatigued.. Take a few naps throughout your
day. Let people know that this is a necessary thing for you to do and inform
them that your need to have uninterrupted nap times is crucial, therefore you
will be turning off the phone. If you cannot bring yourself to turn off the
phone ask people to not call during specified times.
TAKE CARE OF YOU - WITHOUT ANY FEELINGS OF GUILT!
Even if you do not actually sleep, the rest itself is good for the body.
The sleep, or resting period(s) also give the mind time to relax as well,
thereby revitalizing and renewing your emotional state.
If you are unable to attend social events such as holidays, birthdays,
anniversaries..
Perhaps some of these functions could be held in your home. As far as
preparation is concerned, everyone could be a participant in bringing the
necessary foods, beverages etc.
Of course not all functions can be carried out this way, but as not to be left
out of everything, I am sure people would be more than pleased to make these
arrangements especially when it involves immediate family members or close
friends.
If you are unable to make plans in advance...
Make plans anyway. Explain to other's that you would love to do this or that,
go here or there. Accept their invitations and extend your own invitations with
the explanation that there is a possibility of canceling depending on how you
may be feeling on that particular day.
Some people may not be very receptive to this idea, but for the most part,
other's will take notice that you are trying to keep a positive and hopeful
attitude. More importantly, you are also trying to maintain some sense of
normalcy in your day-to-day life.
If the day comes around and you are simply too ill - Canceling will
undoubtedly be a disappointment, but you must remember that there will be a next
time. Simply reschedule and look forward to the next visit and not dwell on
what you just had to cancel.
Section 3
Giving yourself permission to be angry..
Learning how to deal with and heal your feelings!
When you are living with a chronic illness day in and day out you may be at
home alone. People will visit occasionally .. and then there's the phone.
During that alone time we think or daydream. Thinking is a good thing,
however, often our thoughts can take a detour to the time when we worked, we
traveled etc. When we come out of that daydream and we are facing our reality
once again, you may encounter many negative emotions.
If you feel angry or sad, or any negative type of emotion -
Know that it is OK to feel this way!
Anyone in your position would have these feelings because it is a normal
reaction during a time of such confusion and change in your life.
Occasionally you will feel consumed by your illness and to feel mad about
it is your RIGHT!
Never feel guilty or hold the feelings in. Guilt is an emotion that one
should ONLY experience when they have done something wrong! You have done
nothing wrong.
There are ways of dealing with and healing these feelings.
Here are a few
suggestions:
- Talk to someone who REALLY understands and empathizes with what you are
feeling.
- If at that moment there is no one around, a wonderful way of expressing your
feelings is to write in a journal. Often writing out your emotions can be a
wonderful outlet for releasing negative energy.
- Crying - A good cry is a great stress reliever. It's as if each tear shed is
an expulsion of every angry cell in your body.
- Take a long hot bath. Aromatherapy foam baths are amazing. Lavender,
especially soothes the body and the mind. Also during your bath.. Lighting a
few aromatherapy candles soothes the mind, as does listening to your favourite
music.
- Since many of us cannot "walk off" our stress or exercise, I have found that
doing deep breathing exercises while sitting in a low-lit room with the door
closed (to eliminate distractions and noises) is an excellent way to calm the
nerves and relieve the stress levels.
- Lay down on the couch or the bed and plug in to your favourite music - empty
your mind of all thoughts and only allow the music to fill your mind.
*my favourites are Kenny G. and Enya
-Listening to relaxation tapes, sometimes better known as bio-feedback tapes are
often very helpful. If you are seeing a psychologist or a hypnotherapist they
may be able to suggest a place to purchase them or enquiring at your bookstore
or music store.
If you are short on funds check with your local library.
MOST IMPORTANTLY, if you have many days filled with tears, sadness and unhappiness; where
you can't seem to find much to be thankful for or any sign of happiness from
within, it may be in your best interest to discuss these feelings with your
physician. It is important to update your physician on not only your physical
health but your emotional well being too!
If you are feeling extremely despondent do not look at this
as a failure or a weakness on your part. Do not compare your situation with
anyone else's condition. We are all different.. We are all unique.. No two
people facing similar situations will cope with it in the exact same fashion.
Many people living with a chronic illness may become depressed due to the
circumstances and challenges they must face -Once again, it is a normal reaction
to a confusing and stressful time.
Section 4
Blessings...
Since many of the activities which seemed so ordinary and common place are
no longer a part of our daily routines, we MUST now replace them.
Many of us need to feel productive and useful in our daily lives. There is
great satisfaction in doing well in the world - on an emotional level, a
financial level and on a personal level.
In the early stages of our illness we are focused on our illness. There
does come a point when we don't feel very useful, productive or accomplishing
much of anything. Confusion sets in because we really can't see the light at
the end of the tunnel. We have difficulty in stepping outside of our situation
and looking for the positives.
Those negative feelings which I mentioned earlier regarding sadness, anger
and confusion are all normal and natural under these conditions.
I honestly believe that every human being has much to be thankful for, and
that we all have many blessings! Sometimes we forget, or don't appreciate our
blessings. Unfortunately it takes something like a chronic illness, to make
all of us aware of our blessings.
Before searching for the wonderful things we do have in our lives, remember
that YOU are and always will be a very special and unique individual, regardless
of your illness!
Blessings which we are thankful for come to us in many different ways.
Everyone has their own definition or description of what a blessing is to them.
Therefore, whatever blessings you discover in your life - Embrace them...Nurture them..Always hold them close to your heart!
One of my greatest blessings is the love and support I receive from my
husband... :)
Section 5
Doctor/Patient Relationship
Even if you do not have a serious illness, it is very important that
everyone has a doctor who is a good listener, is understanding and empathetic. A
good bedside manner and an open mind are also qualities to look for in a doctor.
As difficult as your illness is and the toll it may be taking on you
physically and emotionally, one has to remember that this is YOUR BODY!
Therefore, YOU are YOUR own consumer. If you feel that the doctor is not
providing you with enough time when you have an appointment, or is not listening
to you, you must speak up. Quite literally our lives are in the hands of our
doctors and that alone gives the doctor all of the power. As a patient we too
have the power regarding our illness and our options.
If you are not comfortable with your doctor; he/she doesn't seem to really
be listening to your concerns or isn't quite "getting it" or seems to be rushing
you out before you've had a chance to speak, then perhaps it's time to seek out
another doctor. Often we are feeling so tired, weak and at our wits end with
our illness, one of the last things we need now is a doctor who is not on the
same "wave length" as we are. As in anything else in life we shop around for
the best item before we buy it. The same rule applies when it comes to who will
be our health care provider. If you are seeing someone who you are not
satisfied with, ask your G.P. for a referral to see someone else.
Many of us feel that if we leave the doctor who is treating us, the doctor
will be insulted or hurt. As decent human beings we don't want people -
including our doctors, not to like us or to think badly of us. We can't or
shouldn't even be thinking in those terms, because at this point we need to know
that whom ever we are seeking professional help from is going to be there for us
in everyway possible. We are entitled to have the best care possible and if we
are not satisfied then we have to move on.
If you feel uneasy about asking for a referral, take a close friend with
you for support. Perhaps someone who knows what your thoughts have been
regarding your relationship with your doctor could help ease the stress.
Section 6
Do NOT allow your illness to define who you are!
After you have been diagnosed the first topic of conversation will be your
health. People want to know how you are feeling, when your next appointment is,
results of various tests and so on. They are asking because they are concerned
about you and want to be kept up to date.
Sometimes though it can be frustrating because each and every person you
talk to has the same questions and you find yourself repeating things over and
over again. As I said, they are concerned about you, but it's YOU that is
living with this illness. Sometimes, you are pre-occupied with your condition,
being bombarded with constant reminders in the form of pain, medications and
tests.
I found that I needed a break from repeating the same things just to keep
my sanity. I came up with a plan which was very simple. I would talk to my
mother-in-law and after answering all of her questions I would ask her to call
my sister-in-law and my aunt (people I knew who would want updates) and pass on
the information. My husband would also take care of a few calls to friends. It
was a huge burden lifted from my shoulders. I found that after each call I
would be so emotionally exhausted, yet I didn't want these people who cared
about me left out in the cold.
One day when I was alone the phone rang.. I just stared at it trying to
decide whether or not to answer. I was having an "ugly day" and THE very last
thing I wanted to talk about was how badly I was feeling and then of course hear
the caller's voice become low and sounding sad. I wanted to hear good things,
happy things.. I decided to pick up the ringing phone and I told the caller
that I was having an exceptionally horrible day - BUT please tell me about YOUR
day to take my mind off of me! It was a brilliant idea! From that phone call
on, that is what I would do with every phone call and with every visitor...
They would ask how I was, I gave them a very short and concise answer and then I
would ask.."So, what's new with you..?"
It was one of the best things I did for my emotional well being. I didn't
want my illness to be the focal part of every situation in my life. For me, on
a personal level, I was living in this body of pain and I needed to have a
break. It allowed me to hear about other people's lives, their happy moments
and their sad moments. Some didn't want to share their "down" times with me
because they felt I had enough to deal with and they would often say that their
"down" moments were trivial compared to what I was going through. I explained
that everyone's situation is different and that it is all relative to what is
happening in their own lives. I was then able to lend an ear to all the people
who had listened to me, allowing me to feel helpful in their time of need.
During this process, I was removing my health issues from the topic of
conversation and people would then remember they were talking to Eva.. NOT to
"the illness" that Eva has. I still had my creative abilities, my humour, my
hobbies, my love of cooking. I wanted to maintain "Eva the person" and remind
people that I had many positive things to offer. I wanted people to know that
I was still the exact same person inside, even though on the outside I looked
tired and not well.
This was a major stepping stone for me with my illnesses. Getting people
to "SEE" me for me.. And not my illness. It made for happier times during phone
conversations and when people came to visit. It not only helped me emotionally,
it made people feel more at ease around me and lifted their spirits as well.
I do admit that there were still many times when it was difficult to even
crack a smile or engage in any conversation - But by not allowing my illness to
define who I was made my everyday living situation a much more comfortable one
for me and everyone around me.
Section 7
Vital Information for the caregiver!
Written by my husband,
Stephen Waldman
The person responsible for the physical and emotional well-being of a
chronically ill person is known as the caregiver. This person does whatever is
necessary to make sure the person suffering from an illness is kept comfortable
as possible, as well as providing emotional support.
I had to perform this task for over four years for my lovely wife who was
afflicted with various chronic illnesses which caused her tremendous pain and
suffering. It was a great challenge and tested my character and patience.
However, I never forgot how this illness tested my wife's courage, faith and
resolve.
She depended on my dedication which just comes with love and commitment. I
was as determined as she to see her through this period no matter how desperate
and hopeless the situation seemed.
First, you and the person suffering must have an optimistic attitude, no
matter how hopeless things seem. This can be done together or independently
through religion, research, family and friends. Support for the caregiver by
others is as important as support for the sufferer. If the caregiver doesn't
maintain his strength, he will lose his effectiveness and the ill person will
detect his weakness in his voice and actions. This is very counter-productive
for both of you.
Keep things in perspective. Stay optimistic but not unrealistic. The person
who is suffering does not want to hear about, or be compared to, other sick
people. This is an individual problem and everybody is different.
Communication is very important. There are times when you feel like not talking
and this is alright, but tell the person who is suffering that it is just your
preference and not because of her. Tell her how much you care. Emotional
support is as important as physical. Never complain or show your stress. This
is not going to help the situation and that is what friends, family and
religious leaders are for.
Try taking the ill person's mind off of their situation. Create diversions
such as renting video tapes, playing board games or listening to music together.
Invite friends and family over when the ill person is up to it. You may find
that some people require an invitation because they don't want to intrude, so
take the initiative.
Most of all do not neglect yourself. If you aren't up to the challenge
physically and emotionally you will be ineffective as a caregiver. Eat well,
exercise and try to continue your daily routine as much as possible. This
person is depending on you so don't let her down.
Never lose hope. Only God knows what the future holds and I can tell you
from personal experience that miracles do happen. But we have to make them
happen. They don't happen on their own. Research the illness, ask questions and
listen to the person you are caring for. Keep your faith strong and never give
up. There is a Jewish word for this act called a "Mitzvot", or a commandment
from God, and the person performing it is called a "mench".
Be a mench!
In closing...
I wish to leave you with this piece of writing.. (which is also on my site)
"This Too Shall Pass"
Sometimes it feels as though lightning is striking all around...
But we learn to cope while planting our feet on solid ground.
Throughout our lives we are faced with trials and tribulations,
which at the time feel unbearable to handle.
Look deep inside for the guiding light and glow of your flickering candle.
We are all much stronger than we really know...
And the realization of our inner strength will one day surface and begin to
show.
Each and everyone of us - Young and old ...
Have much to contend with in our lives.
Some situations are more difficult and harder to bear...
But with time, acceptance and healing we will survive!
When life's burdens become too much -
Always remember that there are people who truly love us and never sway.
They will be there to encourage us and guide us along the way!
With faith, hope and love in our grasp..
We must believe that - THIS TOO SHALL PASS ...
Go in with the expectation that what can be...
WILL BE!
And if it doesn't arrive today...
Then there's ALWAYS TOMORROW!
~~Author: Monica Waldman~~
To everyone who has read this, I wish you all the strength, love, compassion and
prayers to help you get through your illness and pain.
Eva
If you have a personal story which you would like to submit for consideration, please feel free to write to me at:
Eva_Rising_Up@hotmail.com
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