I just don't have it in me right now.
I'm either too tired, in too much pain or simply lacking the creativity or brain power I need to string words together that make sense.
The following things I found about chronic pain. Not my words and apparently the author is unknown.
But it about sums up my life right now.
I can't do the things I once did- I can't garden, I can't walk in the park, I can't dance or jump around with my kids. I am lucky if I can make it up and down the stairs. Some days I don't even bother trying.
Letter to People without Chronic Pain
AUTHOR UNKNOWN
Having chronic pain means many
things change, and a lot of them are invisible. Unlike having cancer or being
hurt in an accident, most people do not understand even a little about chronic
pain and its effects, and of those that think they know, many are actually
misinformed.
In the spirit of informing those
who wish to understand ...
... These are the things that I would
like you to understand about me before you judge me...
Please understand that being sick
doesn't mean I'm not still a human being. I have to spend most of my day in
considerable pain and exhaustion, and if you visit, sometimes I probably don't
seem like much fun to be with, but I'm still me-- stuck inside this body. I
still worry about school, my family, my friends, and most of the time - I'd
still like to hear you talk about yours, too.
Please understand the difference
between “happy” and “healthy”.
When you've got the flu, you
probably feel miserable with it, but I've been sick for years. I can't be
miserable all the time. In fact, I work hard at not being miserable. So, if
you're talking to me and I sound happy, it means I'm happy. That's all. It
doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm
getting better, or any of those things. Please don't say, “Oh, you're sounding
better!” or “But you look so healthy!” I am merely coping. I am sounding happy
and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able
to stand up for ten minutes doesn't necessarily mean that I can stand up for
twenty minutes, or an hour. Just because I managed to stand up for thirty
minutes yesterday doesn't mean that I can do the same today. With a lot of
diseases you're either paralyzed, or you can move. With this one, it gets more
confusing every day. It can be like a yo-yo. I never know from day to day, how
I am going to feel when I wake up. In most cases, I never know from minute to
minute. That is one of the hardest and most frustrating components of chronic
pain.
Please repeat the above paragraph
substituting, “Sitting” “walking” “thinking” “concentrating” being sociable” and
so on ... it applies to everything. That's what chronic pain does to you.
Please understand that chronic
pain is variable. It's quite possible (for many, it's common) that one day I am
able to walk to the park and back, while the next day I'll have trouble getting
to the next room. Please don't attack me when I'm ill by saying, “But you did
it before” or “Oh, come on, I know you can do this”.
If you want me to do something,
then ask if I can. In a similar vein, I may need to cancel a previous
commitment at the last minute. If this happens, please do not take it
personally. If you are able, please try to always remember how very lucky you
are--to be physically able to do all of the things that you can do.
Please understand that “getting
out and doing things” does not make me feel better, and can often make me
seriously worse. You don't know what I go through or how I suffer in my own
private time. Telling me that I need to exercise, or do some things to get my
mind off of it may frustrate me to tears, and is not correct if I was capable
of doing some things any or all of the time, don't you know that I would? I am
working with my doctor and I am doing what I am supposed to do. Another
statement that hurts is, “You just need to push yourself more, try harder.”
Obviously, chronic pain can deal
with the whole body, or be localized to specific areas. Sometimes participating
in a single activity for a short or a long period of time can cause more damage
and physical pain than you could ever imagine. Not to mention the recovery
time, which can be intense. You can't always read it on my face or in my body
language. Also, chronic pain may cause secondary depression (wouldn't you get
depressed and down if you were hurting constantly for months or years?), but it
is not created by depression.
Please understand that if I say I
have to sit down/lie down/stay in bed/or take these pills now, that probably
means that I do have to do it right now - it can't be put off or forgotten just
because I'm somewhere, or am right in the middle of doing something. Chronic
pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to
me, please don't. It's not because I don't appreciate the thought, and it's not
because I don't want to get well. Lord knows that isn't true. In all
likelihood, if you've heard of it or tried it, so have I. In some cases, I have
been made sicker, not better. This can involve side effects or allergic
reactions. It also includes failure, which in and of itself can make me feel
even lower. If there were something that cured, or even helped people with my
form of chronic pain, then we'd know about it. There is worldwide networking
(both on and off the Internet) between people with chronic pain. If something
worked, we would KNOW. It's definitely not for lack of trying. If, after
reading this, you still feel the need to suggest a cure, then so be it. I may
take what you said and discuss it with my doctor.
If I seem touchy, it's probably
because I am. It's not how I try to be. As a matter of fact, I try very hard to
be normal. I hope you will try to understand. I have been, and am still, going
through a lot. Chronic pain is hard for you to understand unless you have had
it. It wreaks havoc on the body and the mind. It is exhausting and
exasperating. Almost all the time, I know that I am doing my best to cope with
this, and live my life to the best of my ability. I ask you to bear with me,
and accept me as I am. I know that you cannot literally understand my situation
unless you have been in my shoes, but as much as is possible, I am asking you
to try to be understanding in general.
In many ways I depend on you -
people who are not sick. I need you to visit me when I am too sick to go out...
Sometimes I need you to help me with the shopping, cooking or cleaning. I may
need you to take me to the doctor, or to the store. You are my link to the
normalcy of life. You can help me to keep in touch with the parts of life that
I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot
from you, and I do thank you for listening. It really does mean a lot.
TIPS
FOR DEALING WITH PEOPLE IN PAIN
AUTHOR
UNKNOWN
1. People with chronic pain seem
unreliable (we can't count on ourselves). When feeling better we promise things
(and mean it); when in serious pain, we may not even show up.
2. An action or situation may
result in pain several hours later, or even the next day. Delayed pain is
confusing to people who have never experienced it.
3. Pain can inhibit listening and
other communication skills. It's like having someone shouting at you, or trying
to talk with a fire alarm going off in the room. The effect of pain on the mind
can seem like attention deficit disorder. So you may have to repeat a request,
or write things down for a person with chronic pain. Don't take it personally,
or think that they are stupid.
4. The senses can overload while
in pain. For example, noises that wouldn't normally bother you seem too much.
5. Patience may seem short. We
can't wait in a long line; can't wait for a long drawn out conversation.
6. Don't always ask “how are you”
unless you are genuinely prepared to
listen it just points attention inward.
7. Pain can sometimes trigger
psychological disabilities (usually very temporary). When in pain, a small
task, like hanging out the laundry, can seem like a huge wall, too high to
climb over. An hour later the same job may be quite OK. It is sane to be
depressed occasionally when you hurt.
8. Pain can come on fairly
quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain
people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is,
such as a couch, a bed, or comfortable chair, is as important as knowing where
a bathroom is. A visit is much more enjoyable if the chronic pain person knows
there is a refuge if needed. A person with chronic pain may not want to go
anywhere that has no refuge (no place to sit or lie down).
10. Small acts of kindness can
seem like huge acts of mercy to a person in pain. Your offer of a pillow or a
cup of tea can be a really big thing to a person who is feeling temporarily
helpless in the face of encroaching pain.
11. Not all pain is easy to
locate or describe. Sometimes there is a body-wide feeling of discomfort, with
hard to describe pains in the entire back, or in both legs, but not in one
particular spot you can point to. Our vocabulary for pain is very limited,
compared to the body's ability to feel varieties of discomfort.
12. We may not have a good “reason”
for the pain. Medical science is still limited in its understanding of pain.
Many people have pain that is not yet classified by doctors as an officially
recognized “disease” That does not reduce the pain, - it only reduces our
ability to give it a label, and to have you believe us.
1 comments:
I'm sorry you are suffering from the evils of fibro. You are not alone.
I am still recovering from taking a long soak in a warm bath yesterday. I got out of it exhausted, today I'm weak and hurting.
Soft hugs
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