Letter To Family, Friends and Anyone Wishing to Know Me

[Guest guest]

Letter To Family, Friends and Anyone Wishing to Know Me

My illness is a difficult one to understand, even for me. Many of

the problems it causes are

invisible and difficult to anticipate. I need you to understand that

my life always is subject to change because of the unpredictable

nature of the

illness with which I must live. First, let me explain the depth of

this illness- - My joints and muscles are under constant attack and

can be very

sore and painful. - My skin is very sensitive- sometimes to touch, to

heat or cold, sometimes even just to sunlight. - My vision, hearing,

sense of

smell, and sense of taste all can be affected. I may get a very dry

mouth, have mouth ulcers, have very dry eyes, or just have a bad

taste in my

mouth. - My body or breath may develop an odour. - The fatigue I get

can be overwhelming- walking two feet can be a marathon some days. -

My kidneys,

lung, heart and liver can all be damaged by this illness and it's

treatment. - There are emotional side effects that come and go- like

depression,

memory loss, and difficulty concentrating. - The medication I take

has physical side effects- it may make me gain or lose weight, my

face and

appearance may change, there may be other effects, too. - I may need

to use walking aids, other aids like a helping hand, or sometimes

even use a

scooter or wheelchair. Other times I may need no help at all. - I

might not be able to drink alcohol or eat certain foods because of my

medication

and illness. - The illness is here for the rest of my life-

sometimes I will seem very well and " back to the old me " and

sometimes I may become very

ill and need to be in hospital. It's unpredictable. - This is not

contagious, and there is no evidence that it is something I have

inherited or will

pass down to children. This is all because my immune system doesn't

work properly anymore- it's lost its sense of purpose and has turned

against my

own cells and tissues instead of just protecting me from infection.

Sometimes, I will go into remission meaning that I will do pretty

well for a while-

and sometimes, I will have flares, meaning that things will get very

bad. I can't tell when a remission or a flare will happen, and I

don't know how

long either might last. There are some things you can do which would

make it much easier for all of us and I would be grateful if you

would take the

time to read this and try to understand. - My body is in a constant

battle against itself. This means that I will have good days, bad

days, and many

days in between. I can't always tell from one day to the next, or

even sometimes from one hour to the next, how well I will be, so

please be forgiving

when I must change plans at the last moment. I don't mean to let you

down. - Some days I will have all the energy in the world- and the

next day I will

be half dead. It's just the way things are- please don't say " You

were okay to do this yesterday " I can't help it. - Please don't judge

me as a complainer,

whiner, or as a person making more of their illness than seems

necessary. Many of the problems I have are invisible to other people

so please be patient,

understanding and compassionate. - I don't want to spend my days in

misery, so even if I have pain, am very tired, or even if I am just

worried, I will still

try to be happy and enjoy myself. This doesn't mean I am physically

better, it just means that I am coping. My health will never be back

to normal. '

Healthy' and 'better' will always be a relative terms for me now. - I

get lonesome and miss being part of the active life I once lead.

Remember me- call

me- visit me- don't give up on me. Please don't forget me or stop

asking me to do things because I so often say no. It's not because I

don't want to, it's

because I can't. With a little help from you, I might be able to get

more involved. I want to be part of your life. - It's okay to talk

about what is happen

ing. I would rather you just ask than pretend you haven't noticed how

different I am or just avoid me. It's okay for us to talk about how

my illness affects

you, too. I won't see it as a betrayal if you talk to me about your

frustrations with my illness as long as you don't blame me. - It's

okay to say I know you

don't feel well, but I don't want to hear about it today. Don't feel

that you are obliged to listen to me but if you ask how I am, I am

going to tell you so

if you don't really want to know, don't ask! I will try to remember

that although my illness is a huge part of my life, you may not want

it to be a part of yours. If you find me overwhelming, tell me!

Challenge me, but please do it with love and compassion. - Don't try

to tell me that all I need is a little exercise, or just to get out,

or try a certain pain tablet, or some new treatment, etc, because it

works for you or someone you know. Please don't feel rejected if you

try to offer me a solution for my problems and I don't take you up on

it. I am under close medical care and am doing everything I can. -

You may think I just need to push myself a bit harder or that I am

giving in to things too easily. One of the problems with this illness

is that if I try too hard, it can set me back considerably. I have to

be more patient with myself and accept my limits- I don't like it

this way either but I have come to realise that one day of trying too

hard and doing too much could make me much more ill for weeks. I need

to be slow but steady. - Sometimes, I need to sit down and rest, or

take a tablet right away. When it gets like that, I can't wait. I

really am at the

mercy of my body and even though it may seem selfish I know that if I

don't take care of my self, my body will get even with a vengeance

because that is

the nature of this disease. - Some of my medication may suppress my

immune system and make me more prone to catching some illnesses.

Please let me know

if you have a contagious illness like a cold or flu. A simple illness

it can be quite devastating for me and I have to be careful. - Please

don't belittle

my pain or fatigue. It makes me crazy when I hear " Yeah, you may

think your back aches, but you just sit all day- I spent the day in

the garden " !? I wish

I could have pain because I did something I enjoy- not just because

my body is hurting itself. It is okay though to tell me how you are

feeling- you may

find that I am more compassionate than most when you tell me how you

feel because I really do understand pain and fatigue and you will

find I may have

some advice that can help you! - Please don't tell me I need to lose

weight. I know. The tablets I take (steroids) make me gain weight,

increase my

appetite, and change the way my body stores fat. I am doing the best

I can. Don't criticise my eating, please. It won't help either of

us. - I don't

choose to be down and miserable but depression is part of this

illness. I need you to remember that I didn't choose any of what this

illness has done

to me- I am struggling to learn how to manage, to cope with what it

does to me, to grieve the loss of my health and to do the best I can

to live the best

life I can. Although I am grieving the loss of who I was before this

illness struck and sometimes I get so frustrated I just can't help

feeling sorry for

myself, it's not just in my head- its an effect of the illness, too,

that I become depressed and anxious. - Sometimes I will have brain-

fog. It's common

in this illness to have moments when your memory is poor, or to find

it difficult to think clearly. It will pass. It's not permanent- so

if something is

important to you please don't forget to remind me! I will be

grateful. It's also ok to remind me to write something down, or to

check back with me later.

Please don't think I am ignoring you, being difficult, or just don't

care. I feel terrible when I forget. - I need to know if and how I

can ask you for

help. Sometimes, I will need more help and support than other times.

Please let me know if you can help. If you can give me a lift, take

me to an

appointment, help me with an errand or a task- maybe make a hot dish

for me some night when I can't manage to make a meal- please let me

know. When

I am stuck in the house because things are bad, please come sit with

me, even if there is nothing you can do. Little things like calling

me every couple

of days just to check in- sending me a note, card, or email can make

a huge difference. If you can, please reach out to me. Even if you

can't do anything

specific, just be my friend. Your friendship is the most important

therapy I have. - I can still do things for you. Please don't stop

asking me to babysit,

to run an errand for you, to do something I have always done before

when I was well. I'll be honest if I can't- please, if it's something

I did before, it's

okay to ask me again. - Please respect handicap parking and

encourage others to do the same. Sometimes, people with illnesses

like mine can't get out if

they have to walk far- if everyone respected handicap parking, life

would be easier for me and people like me who need those special

spots. Defend handicap

parking and it makes a real difference. All in all, I need you to

realise that I am the same person I have always been- my heart, soul,

hobbies, interests,

sense of humour and mind are all still there- it's my body that is

turning against itself. Please accept me the way I am, please forgive

me for the things

that have changed, please forgive me and try to understand if I

disappoint you, try to accept that I am not in control of what this

is doing to me. Please

forgive me if I let you down. I know that these changes are hard on

everyone around me, too. I wish it could be different, for all of us.

With time,

compassion and love, things will eventually settle and we will all

adapt. These are the things I will try to offer you: - I will be

honest with you about

my limitations, and if I need to change plans I will try to be as

considerate as I can and tell you as soon as possible. - I will ask

you for help if I

need it, but I will accept if you can't help. I will not have any

hard feelings if you say No- I will respect your limits. Please don't

ever feel guilty

for being honest with me. I will try not to take advantage of your

kindness and support. - I will accept if you ask me to stop talking

about my problems

and what is wrong with me. I don't always realise that I may getting

a bit wrapped up in myself and my illness sometimes, and I don't want

to overwhelm

you- just be honest with me. - I will do the best I can to be

cheerful and happy, and try to be good company if you visit or call. -

I will try to explain

honestly if you ask me about my illness, symptoms or medication. - If

I am feeling sorry for myself I will try not to take it out on you. -

I understand

that you also need to take care of yourself- if you need time, space

or to get away for a bit, just be honest with me and I will do the

best I can to

understand. I really do understand the need to take care of yourself

more than most people. - I will do the best I can to keep myself

well, by taking

the medications as I should, by doing what my healthcare workers

advise me to do, and through a good diet and good rest. I won't make

myself any sicker

or fail to take care of myself. Thank you for reading this and trying

to understand. --- Although this letter was inspired by the spirit of

one written

by JJ. Waller (at fibrohugs.com) for fibromyalgia sufferers,

this is completely the work of Cynner68 *

http://www.butyoudontlooksick.com and

substantially different than Mr. Waller's original. Please use this

letter if it will help you to explain your feelings to those around

you. You may

use it and post it as long as it remains complete and unchanged, and

as long as you give credit to Mr. R. Waller at fibrohugs and B.

Siviter at

http://studentnursehandbook.com/