Tuesday, November 15, 2005

A Message to Well People

There are people, even family members, that don't understand because I laugh and have fun, that there is something seriously wrong with my body that no cure is available. It's one reason, I am fighting soooo hard to get Shasta trained and certified as my Service/Therapy Dog.
Well for those healthy people that have family or friends that are in the same position as me, I have a message for you.

A letter to a well person

To whom it may concern,

Having and living with various chronic health conditions, as with any invisible chronic illness means that your life as you once knew it is changed. Just because you can't see those changes doesn't mean they are not there and felt by us.

Most people don't understand these diseases and cannot imagine what living with chronic illness’ means. With the hope that there are some who wish to understand, these are some of the things I'd like you to know about us.

Please understand that being sick doesn't mean we are not still human with all the same emotions that healthy people experience. Some of us must spend our time carefully so that we conserve what little energy we possess. If you visit we may not be much fun, but we still love and appreciate company. Some of us worry about our jobs, schooling and families. Most of the time we'd like to hear what is going on in your life as well as sharing our lives.

Please understand that one can be happy but not healthy. When you have the flu you feel fairly miserable, but we've been ill for years. We can't be miserable all the time; in fact most of us work hard at not being miserable. So when you speak with us and we sound happy, it means we are happy. That's all. It doesn't mean we are not sick, in pain and extremely fatigued, or that a miracle cure has been found and we are all healthy once again. Please don't say, "Oh you're sounding better!" We are not sounding better, we are sounding happy. Feel free to remark about our happiness. Just don't assume that it means we are better.

Please understand that being able to stand up and participate in an activity for 15 or 20 minutes doesn't necessarily mean that we can participate for 30 minutes or an hour. It's quite likely that doing those 15 minutes has exhausted our resources and we may need time to recover. Remember the last time you played a swift game of tennis or softball. You couldn't repeat that feat over and over again. This applies to every thing we do.

Please understand that chronic illness is unpredictable. It's quite possible that one day we are able to walk to the park, or shop in the mall, while the next day we may have no energy at all or that we are in extreme pain. Please don't say, "But you did it yesterday." If you want us to do something, just ask and we will tell you if we are able. If it is necessary to cancel an appointment with you at the last moment, please don't take it personally. There are days when we feel great and all of a sudden that changes and the pain or fatigue is overwhelming.

Please don't ask us how we got our diseases. There are many variables to consider. Some of us may have been born with a predisposition of the disease or condition that certain factors, such as severe trauma, for example could bring to the surface, or inherited. Sometimes, one condition leads to another and eventually they multiply. Our immune systems tend to lower, which brings forth even more conditions. If we wish to share our medical history with you, we will, but don’t play doctor with us and tell us we do not need all the medication our doctors have prescribed to us. Nor don’t tell us what we should do to make it better, such as run around the block each day. We know our bodies and pacing plays a big factor in our lives. Please don't be afraid to hug us, kiss us or hold us. Not all diseases are contagious and you will not contract our condition by supporting us or loving us. We need that as well as a normal, healthy person and sometimes, even more.

Please understand if we tell you that we have to sit down, lie down or take our medications that we have to do it now. Chronic illness doesn't wait for a convenient time. It does not feel good to have to stop what we are doing to tend to our health. Remember that we didn't ask for this. At times you may think we feel sorry for ourselves, but at times we mourn for our lives before our illness, when we were free to pursue all our dreams and hopes. Think about the way you would feel if your life was drastically altered and you needed to give up your way of life and learn a whole new way to live. Be patient with us and try to understand. Don’t pity us, for we do not want your pity. We are ‘normal’ in our own way and only ask that you accept us as we are.

There is a wonderful saying, “Friends are people that know all about you…and love you just the same!”


IndyPindy said...

I sympathize - my mommy has terrible sinus allergies and asthma. They are so bad that she had surgery to fix a deviated septum and a few ot her problems two years ago. She takes a lot of medications for her allergies and sinus problems, but they don't always keep it under control and she gets tired a lot. If she gets a cold, it always becomes a sinus infection - no matter how much vitamin C she takes, no matter what other home remedies she tries. She gets sick of people saying things like "Have you tried a humidifier?" as if they are the only geniuses who have ever thought of it. And no - humidifiers do not help allergies. If you are allergic to mold, humidifiers can make your allergies worse. For the past few months her sinuses have been acting up and she has been getting migraines. Once she had a migraine every evening for two weeks. Her doctor gave her some new medications to try, and if they don't help she will have to go to a specialist.
My mom said she understands and she hopes your friends and family will understand too. This past weekend she went to a birthday party for a family member and someone complained that everyone was boring. My mom said that she had been sick and was not exactly 100% yet, so she really couldn't party too hard and drink a lot. The person said "Well, if you're sick, stay home!" Mom said that was very rude, and that just because she wasn't 100% over being sick, she wasn't contagious and she still wanted to wish her family member a happy birthday. People can be so insensitive. Mom sends you a hug and I send you a big wet Husky kiss!

Conners said...

Oh Indy, one of the allergies I have of many is guess what? Animal dander! But could I live without my Shasta, BrandyCat or Petu??? NOOO WAYYY!!! Plus like my allergist said, unless you build yourself a brand new home from scratch, cat dander stays in that house for the rest of it's days, while dog dander has a life span of about 25 years no matter how thoroughly you clean. So to give away your loved ones is not going to help you one bit. Not that I would of course!
I have a list of conditions, diseases and disabilities as large as all the talents you have, and every year, the doctor seems to tack on one more. *sheesh* I just laugh and say, 'Add it to my list!'
When I first got sick and couldn't do ANYTHING that I used to do, I wondered why I just wasn't taken away during the surgery. But, after years of frustration it hit me. I might not be about to do what I used to do or how I used to do it, so I would have to learn other things to do and do them differently than before. The more I tried (becuz I'm VERY stubborn which is my strength)I can do MANY things now and even though I get mixed up and stumble into a post and say, 'I'm sorry!', I can laugh at the funniness of my disabilities. Shasta helps me a LOT with that!!!
And when my body takes control of me and I cry and can't do anything, Shasta is there for me too, licking up my tears and wimpering like she's going to cry, so while I comfort her and she comforts me, it turns into a laughing time and laughter is your best medicine...well...next to Shasta, you and Stormy of course.
I was given a second chance at life and I'm going to try my darndest to enjoy it...even if I hurt or can barely move a muscle.
That person that was rude to your Mommy was very insensitive. I've met a LOT of those kind of people, but you know what, they don't understand unless they get it themselves and that I don't wish on anybody. Well...*giggle*...I confess, with some people I wish they could live in my shoes for just one month and see how they would behave. LOL
The reason I put this post up was because my daughter was telling a friend of mine, that she is worried about her grandma because she never gets sick. Mom has been sick since I was young. That hurt my feelings badly. Living with pain and fatigue everyday of your life is not normal and just because we laugh and enjoy ourselves, doesn't mean we won't pay for it later.
One Levy day (that's new years day day) a bunch of us went dancing and I danced the whole day away. What fun I had. After that I was in bed for 7 months, but it was worth it becuz I had sooo much fun that day.
You give Mommy a big soft hug from my and I give you a nice kiss right on your wet nose. MMMMWA!

Amstaffie said...

Sometimes us daughters don't realize what we say... I'm sure she didn't mean to hurt your feelings.

Girl, between you & my mom, I don't think there is anyone out there stronger & I don't mean in a muscular way either.

I know that there's not too much I can do way down here & you way up there, but I can pray that you'll start feeling better & your body will start healing!

Conners said...

I still don't have a whole lot of energy, but I'm not coughing and hurting as badly. That's better than it was, so in a few days...like tomorrow, I plan on getting OUT OF THIS HOUSE and have an adventure with Shasta!!! She deserves it from the patience she has of watching over me and not caring if I can walk her or not.
SOOOOO tomorrow, we are going to go to the store, but we are going shopping differently. I need both a big bag of dogfood and a big bag of catfood. Well, we aren't going to do it all at once. Instead I bought Shasta a proper pulling harness and Michael gave me a nice big wagon he made.
I don't want her to pull too heavy of a weight at first. It's not like with the sled where it just skims across the snow...if we had any. LOL
So tomorrow we go and buy the big bag of catfood and she can pull it home. She LOVES her new harness. The next day we will go for the dogfood.
I found out a very important thing this week. Do you remember those pics I sent to you of the floor tiles barely on any of my floor? Well there are less now and even though I got the doctors note back in 2002 or 2003 to give them, they never repaired them or anything else. A couple of minor things when they saw me on the news, tv and radio, but then it all quit again.
My daughter constantly tells me she feels ill in my apartment and can't stay long. I can see the dark circles around her eyes when she comes.
My g/f Cindy (the one with the cancer) came and stayed 9 days here and we were both sick together, but it was nice to be sick together than alone.
Well, she got sicker from staying here and now I KNOW it's my apartment and that's why I feel better when I get out of it.
If I wasn't fighting for so many rights, I would be able to fight them on it, but the Pit bull ban has been a priority...same with trying to get her trained and certified. Then I could move out of this apartment that should be litterally CONDEMED!
I need to gther a little more strength and then I think I will surprise my landlord. I'm going to call the tv station or Fifth Estate and invite them over along with showing them my doctors note I photocopied and all the photocopied work orders I have put in in the past 3 years.
In January there may be a new doctor coming to London and I don't care if I have to camp on his doorstep to be there first, but I'm going to be there no matter what! I might make the news with that...Woman sleeps in sleeping bag to get doctor! ROL
I can see my anger of getting things done is coming up and that means I'm getting stronger again and regaining control of my body. BAD BODY!!! I take that Dragon and put a sword into his head and say NO MORE! ENOUGH!
Thru all this, Shasta has been my blessing along with my friends, near and far.
You're right about Danielle forgetting about how I was in the past and how I am not. She knows I push myself for her and bike in the freezing cold to babysit when I have broncial pnomia because I love her so much. Tht's why what she said to Cindy really hurt me.
I think I will senf her the letter I posted on here with a touching little personal message on it and hope it touches her heart and makes her understand more.
OH! I bought Shasta the wire muzzle with the leather with felt along the snout to protect her and she likes it. I've made it very positive on her and she doesn't seem to mind it one bit, where she hated her confort muzzle. Go figure! LOL
It's been a hard 3 weeks or so of illness, but I can feel my old self coming out and that means RECOVERY!!!! Thanks to both of you for caring and being there for me. Your prayers once again really helped my dear sister in Christ!!!
I love you.