Discovering What's Missing

While lost in that darkness you lose yourself and your life, which includes everything you normally enjoy. You stop caring about those things, doing them feels empty or like it takes too much effort. Along with losing my desire to stitch I also lost my desire to read.

Now reading has been a constant companion for me, a long with writing. I read books constantly since I first learned how to read. I remember as a child sitting in the back of my closet, yes behind the clothes, with a flashlight and reading. I did this in the middle of the night and hiding in the closet (sometimes) was to keep the light from showing so I wouldn't get caught because I just *HAD* to know how the story ended. Everywhere I went, I brought a book. They were my friends for many years when I didn't have friends.

Yesterday Ron and I went out for dinner, something we haven't done in over a year. After the meal (which was great btw!) we went to the book store. The last time we went I remember just rambling around not finding anything of interest, but last night I was interested. With a bit of help from an employee I found some books I wanted. Stephen King's son (one of them) is a published author as well. He goes by the name Joe Hill and he had 2 books out that I had not seen before, so I bought them. (I already had his other 2) When we got home I peeked at them and chose one to start reading, NOS4A2. It grabbed me within the first couple of pages and I LOVE when a book does that. It grabs you and takes you someplace magical and wonderful.

Feeling that again made me realize how long it had been since I actually read a book. I re-read books and enjoy them every time. At least, I used to. I thought back and it took a while, but I think it has been well over a year since I read a whole book, either a new one or an old and much loved one. This just blew my mind.

Me? Not reading?

Reading had always been my escape, my comfort, and my savior before. Stories helped me deal with so many stressors and depressive episodes before. Why was this time so different? I don't know but it certainly was different.

I read for HOURS last night! I devoured the words as the images filled my head and just enjoyed every bit of it. I finally dozed off over the book and when I woke up after just a few minutes I did what I promised I would ad put the book aside and tried to sleep.

I wasn't kidding when I said I spent most of my time over the past couple of years doing nothing except staring at stuff on the internet (sometimes good stuff, sometimes stupid stuff).

It feels good to be doing the things I enjoy, and enjoying it, again. But I am worried. Will this period of being awake just last a couple weeks, then go away quietly like the last couple I had in the past 3 years? I hope not, I really do.

(BTW there is good news about my chronic pain. Turns out hypothyroidism can cause pain. My thyroid is better balanced thanks to medication and in doing so lots of symptoms cleared up, and the intensity of my pain had dialed down a bit. I am back to being able to stand for 10 or so minutes. Eventually better things will be written about but right now I'm writing out what my brain is focusing on and it seems to be focusing on noticing how badly this depression affected me.)

New Poems

I'm not sure how good this is, but I got bit by the need to write about 10 minutes ago (it is 9:01 AM, 1/22/13). So I opened a word document and started. After a bit of tweaking this is what came out. I am very pleased because this is how I used to write. Get that feeling of "needing" to write, right now..no waiting. Grab paper and a pen/pencil/whatever and just let the words come. When I had written enough for that feeling to go away I would then look over what I wrote and edit things. Sometimes it was an essay that came out, other times a poem (or multiple poems)..they just tended to pop into my head all ready to go, all I had to do was write them down. I doubt I follow any "rules" of poetry, but that doesn't seem to be the point. The point seems to be to try and put my emotions into prose as accurately as I can. 

I've been struggling for the last 12 years to be able to write the way I used to. It is finally starting to come back. That status I posted the other day about pain taking bites out of those who suffer from it, was written because the need popped up. I've had the need pop up more in the last couple weeks than it had in the last 12 years. Anyway, this isn't perfect but I do like it, so I thought I'd share it. This came about because I have been asked how/why I would willingly allow apathy and depression to take over, why I would give up and just dissociate. This seems to be how my mind wants to answer those questions for right now. Another thought that keeps popping up is that, in part, it is a rest period. A time for me to just stop fighting and allow my batteries to recharge, so to speak. It takes a great deal of energy and effort, conscious effort (both mental and emotional), to push through the pain and try to live some semblance of a life. It takes a lot more effort than many people realize, want to believe, or even consider. Sadly only those who also live with constant pain/illness seem to truly understand it fully. So I'm guessing that this poem/prose/whatever you want to call it, is an attempt to help people understand, or to at least help them try to understand. 

Darkness Brings Relief

Author: M. Hull (Jan. 22, 2013)

Into the darkness my heart has fallen

                Feelings forgotten

                                body ignored

Nothing penetrates the blackness surrounding

                floating lost in the void

Neither emotional nor physical pain can reach

                deep into the darkness

                Inky depths that protect so sweet

Apathy wraps gentle wings about me

     pulling me in with whispers of peaceful serenity

                promises of relief

Snuggling in deeply

                an escape desperately sought

                a coldness quickly wrought

                yet the heart and soul care not

For the darkness  

brings relief to a desperate soul

Immune to the cold which surrounds me

Chilling self and those around me

Creating an icy boundary

few dare to cross

Leaving me to comfortably wallow

                free floating

                at peace

Deep within the darkness

 the darkness which brings relief

Ignorant of the blackness about me

Unaware of life’s buzz without me

Floating in quiet solitude

Dissociated from the world

mind and soul freed from the hell

the hell of my own flesh

With silken cords does the darkness bind me

                a willing captive

                a slave to darkness’s relief

END

Not too bad I don't think. I'm just glad to start having that need to write that has been apart of my life since I was a kid finally coming back. 

P.S.: To remmy and Sterling This one is for you two for helping me find a way to get my writing back. Thank you both so very much for your ideas, they really did make a major difference! and, as always For Ron, my soul mate and biggest supporter. Thank you for everything you've given to and done for me!

Below are a couple other poems/prose that came to me. This one is definitely not done, but when I got that far my mind jumped to a different direction/wording and I moved to that. It seems to have worked much better because that poem is pretty much complete, just needs a final edit, but I'm going to post it anyway.

Through trial and error

And life altering mistakes

I hoped, dreamed and prayed

That some day

Some day

I would find the one whom I sought

The one  completes me

Making me whole

As his love filled my soul

END

The second one, which popped up so fast and urgently that it overrode the

first one completely LOL It's not done, but I'm so sleepy I can't figure out

where it needs changed LOL

With each day I lived through

continuing to breathe

I tempted the fates

To deny what I need

Mistakes in my past

errors in judgment

Love which didn't last

as I wept silent tears

the holes in my heart and soul

ached and cried out

loneliness vast

Through bruises, tears, hurt and pain

through trials, errors, and things full of shame knocking me to my knees

again and again I fought on, seeking that one

Yet something within me refused to quit

I couldn't give ground, give up or give in

From the ashes I rose again

I fought on

Stronger than before

Determined to win

seeking that one

that could fulfill me from within

Then the day came that I opened my door

You stood on the stoop with a smile

Our eyes locked and our nerve endings

all at once ..cried out that w be together at once

As my heart filled with desire

My soul rose ever higher

        

A quick second or two

That lasted forever

As our hearts grew together

and our souls entwined

And I  knew at once, my dream

                was realized

Just a fleeting second in time

Every fiber of my being screamed together

letting me know you must..always...

             be mine

Despite obstacles barring our way

We held on until that fateful day

when at last, the two became one

As we lay together, limbs intertwined

Our souls touched each other

filling the holes in our hearts

With a love for all time

END

More Reading and Thoughts

I am continuing to read the book The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. It looks like there is going to be a lot of record taking. Tracking pain levels through the day, as well as graphs for activities and pain level on the same graph (to show correlation between the two), tracking flare ups daily, and weekly, as well as individual write-up for each flare. The idea behind all of this tracking is a good one and I am sure it will help because I agree with the statement that the more I know about my pain and how it affects me, the easier I will recognize areas that I can change to gain better control and less pain. But wow does it look rather overwhelming to just keep all those charts every day, almost a job in and of itself LOL 

I've gotten to the part about setting goals, I am thinking I will set 2 to start with. The first is to help me feel like I'm actually achieving something every day, so I will try to do at least 1 to 2 loads of laundry per day. The second will be to fill out all these charts LOL 

Because my depression and apathy are so deep, and my ability to move around is so low, I am taking the advice from one of the other books regarding pacing from a place a being bedridden. It basically said that I may have to start out with something very small, that someone else may not see as a big deal, but since I've been doing almost nothing for 18 months or so now, it is a big thing. It is important to help re-build the desire to fight again, to get better, especially for those like me who are coming at this from a place of having given up and letting the pain run my mind and my life for so long. This will take a while, one small thing at a time because if I try to change lots of things at once I will set myself up to fail.

Interesting statement I just read. I did some of the exercises that are on the book, on the website for the book. I did one about activities and avoidance of those activities due to pain. There were a couple that have not changed due to my pain. The comment was that even though I am thinking I do nothing, those couple things prove that this is not true, that I am still doing something. When I read that it kind of gave me a little jolt, one of those "duh! Missy!" jolts. I've been so focused on what I haven't done every day, that I ignore what I have done.  

Gosh I feel like I'm having to learn how to live all over again. hmmmm...I guess in some ways that is exactly what I am doing. 

My pain wasn't too good today. We have bad weather this week and stronger weather moving in today, which is what woke me at 4AM. All the muscles in my back and pelvis were tight so I took muscle relaxers and applied the heating pad, which has helped. I also took my meds, which has helped as well. I did some mild stretching that the physical therapists taught me to help release the tension in my back and pelvis muscles, this also helped. I did some breathing and am refusing to let myself think the catastrophic thoughts I usually have running in my head. I'm sitting at a 7, but it is not rising like it normally would be. Instead of just letting it run rampant, I tried doing things to help control it and it is helping. Usually when I wake up this way, by this point (2 hours later) the pain has gone up. But so far, I am controlling it and who knows, if I continue to do that I might actually make it go down and not hit a 10 (pain crisis) when the thunderstorms go through today. Does this mean that I am doing it? I think so!

Today will have to be a rest day with the exception of filling those forms.

My brain is still working over the fear. I will probably do some stream of consciousness writing in my written journal to see what comes out, then hopefully I will be able to post something here in a couple days that talks about more reasonably than stream of consciousness writing allows.

Edited to add at 6:47AM: I just took the test about how my husband's response to my pain issues affects me and possibly our relationship. Finally, a really GOOD score! It asked me to rate by frequency on 0-10 how often he does or says things like "Your pain interferes with my life", "you can't be in as much pain as you say" and similar negative things. It then asked me to rank whether I liked or disliked when he says those things. For the entire list I got to say 0, because he doesn't say those things to me. This doesn't mean that he never talks about being frustrated or concerned, but he never throws it in my face, tries to make me feel guilty, or anything like that. He has been so immensely supportive, understanding, and helpful. We've talked about this many times, and he does express that he occasionally feels a twinge or frustration or similar emotional reactions, but it doesn't go beyond that twinge because he knows this is not my fault and he loves me the way I am.

It felt good to get a good score on something! LOL

Taking Stock In Attempt To Change

For the last 18 months, and probably longer, my pain has been in control of my life not the other way around. When my pain got worse a few years ago I adapted and still managed to function. When it got worse in April 2011, I could not figure out ways to adapt as nothing seemed to work. As time went on, depression increased, mobility decreased and pain took control. My old methods for dealing with and living despite my pain are no longer effective with this new level of pain and symptoms (no standing/walking more than 5 minutes). So I decided to try and get some help. I can't locate a behavioral therapist who deals with chronic pain in my area, so I ordered some books.

I am currently working through "The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. I already knew that my coping mechanisms are not good and in the case that I've been using dissociation to deal with my pain, they have degenerated into very unhealthy mechanisms. I bought the books back in early February I believe. Since then I've read a few pages in each one (I bought 4), then did what has always worked for me. I allowed my mind to analyze and think about the ideas these books represented.

It is very hard for me to admit that my actions and thoughts are contributing to my pain. It is difficult to admit that I lost some of my ability to manage my pain effectively a while ago, and lost the rest of it in the last 18 months or so. It is hard to admit that I gave up. I wanted so much to believe that I was doing everything I could. That I was trying to function with the pain, but the truth is I gave up. The pain got so much worse, with new symptoms and the inability to stand for more than 5 minutes, no real help from my doctor, and I gave up. Now I am sitting here crying because this is the first time that I have faced head on and admitted clearly that I gave up. Instead of saying something like "yeah I've given in BUT <insert any but here>", the truth is I was kidding myself, there has been no actual "but" for a long time. I do occasionally fight back and try to do things like some laundry or housework or cooking, which increase my pain and when that happens, I give up again for a while before trying again. But those attempts are few and far between.

Why am I sharing something that to me is emotionally painful, humiliating, terrifying, and so intensely personal? I'm not really sure what all my reasons are, but the one that comes to mind immediately upon asking myself that question is that I want others who may be in my position to see they are not alone. In addition I am hoping that by sharing the truth about my own mental, emotional, and physical ability to fight/live with my pain, that those who are in the same boat as me, can see that there is still hope. I have reached a point where I am sick of this. I want my life back. The only way to achieve that is to work at it and learn new ways of coping, since obviously my old ways aren't working. Sitting around waiting for something outside of myself to give me back my life obviously doesn't work. So I guess it's time to get off my ass again.

In the book I mentioned above there are lots of exercises. These are designed to help you see where you are now in dealing with your pain. What is working well, what is not working at all, and what could use some improvement to work better. The beginning of the book, like any other self-help book or even therapy with a therapist, starts out with taking stock of where you are right now. Identifying what works, what doesn't etc. Also identifying your readiness to change, your motivations. I understand all of this having gone through it before with and without a therapist when I was dealing with healing after abuse. I've done these things in conjunction with a therapist in order to help my daughter heal from abuse. Many of these first steps are the same.

What surprised me was the fear reaction. Having the fear of facing old abuses in your past, acknowledging the damage it has done and the negative effects it has on your present all made sense to me. Who wants to face such painful memories, accept them, work through them and all that. The fear made sense.

But now, accepting this fear of dealing with my own pain means accepting that I have failed. For some reason I am finding it much harder to accept that I am afraid of trying anything. My biggest fear is increased pain and decreased mobility, followed by fear of failure. For some reason this isn't making sense to me. I keep asking myself "Why am I afraid of my own pain?, heck I've lived with it for 30 years (varying over that time from mild, to bad to worse to now [horrible]). I know I will live with pain the rest of my life. Why am I afraid? Is it really that simple as fear of change?". It isn't making sense to me why I am so scared.

And with so very little for me to look at as things I can do well (in the sense of a job or productive activities), the idea of having failed in dealing with my chronic pain in my daily life is terrifying and painful. I am feeling very vulnerable and very sacred to look at all these things, to see exactly where I have failed. What if admitting all this makes people around me decide I'm no good? What if it makes me decide I'm no good (seeing myself as no good is worse to me than others having that opinion)? What if I fail at trying to change? Heck since I've already failed, what are the chances I can succeed now? I've tried to fight over the past 18 months, but failed time and time again.

But I don't have a choice, I have to try. So I will take my anger and fear and try to harness it as a motivation to get the changes I want. To get my life back.

One of the exercises was to draw a pie chart that represents how I view the way my pain problems affect my life. Included are the pain issues themselves, then social issues and psychological issues. Here is a picture of the pie chart I drew. It clearly shows that the pain issues have overtaken everything else in my own mind; I have allowed the pain issues to overshadow everything, to take over. This ticked me off and scared me and I want to change it. So here's hoping I can do that. I will try simply because I want a life, my life, back.

The book then goes over the Stages Of Change and I am in the "Open to thinking about change, but...". I know Doc's can't fix me. I know that I will have pain for the rest of my life. I know that what I've been doing isn't working. I know my fear of trying to change and failing, isn't going to help. I want to change this pie chart, I want my life back. So now comes working through the fear and getting rid of it so I can take the steps necessary to manage my pain better.

Knowing how I tend to work, when it comes to having to fix things mentally/emotionally/behaviorally, I will probably revisit these topics a few times. Hopefully on this blog so my journey can help others, but it is possible that not all of it will show up here, depending on how personal it is or if the thoughts etc affect someone else, not just me. So most likely I will have to revisit this topic of my fears until I understand them well enough that I can counteract them with more reality based thinking.

Here's hoping that I can get my life back.

Poetry

I wrote a couple of poems back in 1997 about what it felt like then to be living with constant chronic pain. I thought back then they were a bit over the top, but after 10 more years of living like this, they aren't. They are very honest and very real and very accurate.

These two poems have not been edited. They are exactly they way they came out of my mind when I felt this overwhelming need to write them. Maybe someday I will edit them, though I do not want to as their errors show the confusion and difficulty with mental tasks that are also inherent with living in pain all the time. Anyway, here they are:

Aug 13, 1997
by Missy H. ©

Every day is the same

each day filled with pain

can't do what I want to
can't do what I need to

I am forced to sit

sit and watch

my life fade away
my children grow apart
it tears at my heart

I wonder why
why does it have to be this way
I try to stay upbeat
to smile through the tears

inside I am dying
my heart cries for release
my mind aches to live again

to be able to walk, to run
everything on hold
as I watch my life go by

sitting, stranded

wrapped within this cloud of pain..



LIVING WITH PAIN I
May 1997
by: Missy H. ©

People say God never gives you more than you can bear
I have to wonder, as I sit here
wrapped in pain, my body throbbing
all day and all night
no end in sight

My mind struggles to ignore
Fighting constantly
My body wracked with agony
My heart cries for release
Cursing my weakness, the tears hot on my cheeks
How much more must I take?
What sin have I comitted, to earn such a fate?
The pain never ending
The fear having to yield to my body's shortcomings
The guilt of not meeting my role
I have to wonder, is this too much for one soul?

Another Week Gone

Well here it is Friday the 28th of May. I can't believe May is almost over already! It seems like yesterday was May 1st. Damn I am getting old. LOL

I've done pretty good this week about doing chores around the house. I've done laundry, washed a couple floors, vacuumed, emptied trash, cleaned the bathroom and a few other chores. I am proud of myself for doing them. They did, of course, increase my pain level but I didn't care. Everything increases my pain level and doing nothing in the hopes of not increasing my pain is not a good thing. It just isn't healthy and leads to me thinking badly about myself. My back and pelvis are what they are and there isn't anything I can do about it. It is time to start getting on with my life and the things I enjoy. Keeping my house fairly organized, clean, and bills all paid is something I prefer to do. I can't say I really enjoy doing it because housework isn't all that fun, but I do feel proud and satisfied when it is done. I can relax easier in a house where I don't see a hundred things that need to be done every time I look around.

Today was a focus on laundry day and I have gotten a bunch of loads done. Then I made DS bring his dirty clothes to the laundry room, which of course makes it look like I did no laundry at all LOL

DH took the day off so he would have a 4 day weekend. It was nice to have him home today. We did some cuddling and talking. Last night we had a great conversation and lots of laughs about Terry Pratchett books. He has wanted me to read them for years. I had tried a few years back but just didn't enjoy them. However, I tried again this past week. I read Reaper Man first and found myself laughing out loud at parts of it. Reading parts out loud to DH (like he does to me) so we could laugh together. I really enjoyed the book. I finished it in 2 days and started another. I am enjoying this one as well. This made me wonder if it was the depression that kept me from enjoying the books? It probably was since I mostly stuck to re-reading old books (usually Stephen King) most of the time. Books that are old friends, instead of being open to new authors. I have always loved reading and was always willing to try a new author. But I realize that for the last few years that just wasn't true anymore. Amazing how much of a person's life depression eats.

I am so grateful for the return of my enjoyment in writing, thinking, and reading the way I used to. I feel more like myself than I have in a long time.

But You Don't Look Sick

Here is one of the 4 essays I mentioned in my last post. I did the rewrite tonight.

But You Don’t Look Sick
M. Hull © May 19, 2010

Chronic Pain (CP) patients hear a lot of things from other people. These statements run the gamut from slightly annoying to downright hurtful to dismissive to humiliating to derogatory and everything in between. There are two such statements that seem to be pet peeves for most CP patients. They are “Anyone who takes pain medication regularly is really a drug addict” (there are many variations on this theme) and “But you don’t look sick/in pain” is the second one. Is there an official face, costume, clothing or body language for people who are sick or in pain? No there is not, yet people insist on judging our condition and pain levels by the way we look. Just because you can’t see it does not mean it is not there. Though there are not any universal appearances for CP patients, there are signals people can see if they’d bother to actually look for them. CP patients often try to hide their pain for self-protection, but there are clues.

“The eyes are the windows to the soul” is a saying we have all heard. In a CP patient, the eyes are often a window to seeing how bad the pain is at any time. Sadness, frustration, anger, weariness, wariness, and other emotions can be recognized in the eyes. If it is someone you have known for some time, reading their eyes will be a bit easier for you. But for those who don’t know, some cp patients will widen their eyes when they get a sudden sharp pain or a sharp increase in pain level. The pupils will dilate in some people. Also a cp patient will often close their eyes for a couple moments as they mentally prepare to deal with an increase in their pain (often accompanied by slower deliberate breathing). Many of us have signs of being tired such as bags or shadows under our eyes all the time. Those bags or shadows can appear larger or darker during tough times or flares. This is caused by a lack of restful sleep due to pain. Sometimes our eyes will be red and or swollen from crying because the pain was just too much and caused us to cry (pain crisis). Some try to cover these signs with makeup, causing the amount of makeup itself to become a sign of how they are feeling. For example, if a friend suffers from CP, but doesn’t usually wear a lot of makeup, shows up with concealer or foundation under their eyes, it is most likely to cover up the physical results of pain induced insomnia or crying and thus a clue to their pain level. Our medications or unshed tears can often make our eyes appear glassy or dull, which also serves as a clue.

A CP patient's breathing can also be a very obvious signal of their pain level. Many of us try different breathing techniques to try and control our pain. Long slow breaths in through the nose then blown out through the mouth are just one technique. Many CP patients will automatically start doing these breathing exercises when their pain reaches a certain level, or we are hit with a sudden unexpected burst of pain or increase in pain level. Another is when the patient starts paying attention to their breathing and deliberately takes deep breaths, releasing them slowly (sometimes with eyes closed).

A person’s face shows multitudes of emotions with both obvious and subtle changes. A big happy smile is an obvious indicator that a person is happy or in a good mood. For CP patients our faces also give clues to how much we hurt. In response to pain some will press their lips together (the tighter the pressing, the higher the pain), draw their eyebrows together causing wrinkles to appear between them, close their eyes and focus on breathing, frown, or other signs. For some the more pronounced those wrinkles are, the more they hurt. Some will clench their jaw tightly and possibly grind their teeth, again how tightly they clench or intensely they grind their teeth serves as a signal of how much they hurt.

How a CP pt moves also belies their pain levels. The higher our pain levels, the more carefully we move. Depending on what injury or disease causes the pain you can notice limping, taking stairs one at a time (with both feet on same step, like a toddler), using the non-dominant hand, trembling, twitching or jerking of the affected limb or torso. The person may start flexing their fingers or stretching/shaking an arm or leg to relieve pressure, numbness, or pins & needles sensations that come with nerve damage. People with back issues will often try hard to not slouch or bend over, sitting or carrying themselves as straight as possible and doing their best to not bend their backs at all. People with knee injuries will sometimes walk without bending their knees, lean against a wall rather than sit down or other things that will keep them from bending the painful joint. A CP patient may start holding or rubbing a painful spot, sometimes without being aware of it. A CP patient who is in a high level of pain will find a comfortable (or as comfortable as possible) place to sit and stay there; only getting up if they absolutely must. Many, when sitting, will shift positions frequently trying to ease some of the pain. How a CP pt greets you or says good-bye will change depending on their level of pain. Someone who usually hugs you in greetings or farewell, won’t hug the same way, if at all, when their pain is real high. They may not stand up for an introduction or to say hello when you arrive. Movement often increases pain so when their pain levels are high, the CP patient moves around less often. There are many other clues through body language if one bothers to look for them, they can be found.

The tones in a CP patient’s voice often change with their pain level. Some may talk louder, others talk softer. Their voice may become more tense or hesitant. Some may even snap at you without realizing it. They often get an undertone when they speak that can reveal their pain level or anxiety.

Even the clothing a CP patient wears can give clues to their pain level. CP patients tend to wear clothing that will be the least restrictive, apply the least pressure to their body, and have the least impact upon their pain levels. Most often they are items that are easy to put on and to get off and do not apply pressure to the parts of our bodies that hurt. We often wear low heeled or flat comfortable shoes that will properly support our feet. When at home we may stay in our pajamas because they are usually the most non-restrictive and comfortable clothing we own.

Most of us try our hardest to hide our pain levels from others, but our bodies give us away. If you have a friend or relative who suffers from CP you can learn to interpret their signals and thus realize how much they are hurting. The signs I mention within this essay are only a few and meant to give a general idea of things to look for, thus disproving the “you don’t look sick” statement. Each person is different, so each person’s signals will be different. I tried to include fairly common signs. If you pay attention and take the time to learn the tel- tale signs of the pain your loved one is feeling, you will be in a better position to help or support this person. It means a lot to a cp patient to have someone say something like “your pain is really bad right now, what can I do to help?”. By taking the time to learn the signals you are showing your friend or family member how much you care.

CP patients may not look as badly as we feel sometimes, but to dismiss us with such a statement as “But you don’t look sick” is unnecessarily cruel; especially since the signs that show how much we hurt are actually there. Just because our conditions are not as obvious as a cast, wound, crutches or wheelchair, does not mean that our pain is not there. Diabetes, cancer, Alzheimers, chronic pain and more are all conditions which do not always have obvious appearance related symptoms, but that in no way changes the fact that the person is suffering.

We have all heard “Don’t judge a book by its cover” at some point in our lives. It certainly applies to CP patients; do not assume that just because we do not overtly show our pain that we are not hurting. Having a friend or loved one dismiss our pain hurts more than the pain ever could. Sadly many people who respond with the “you don’t look sick” statement either have not paid attention to the signs, or just don’t care enough to see it. I find it sad that any person can so easily dismiss the suffering of another human being this way.