....but you don't look sick.

I am giving a speech tomorrow at Toastmasters.  It is my 10th speech in the Competent Communicators manual.  It is supposed to be inspirational.  I considered many subjects and decided to do it on my autoimmune diseases.  I'm not sure it is inspirational.  I hope some value will be found in it.

Remember this was written as a speech, not a blog, or a story.  

Last time I was at my Dr. as I was leaving the office he said, “Leslie, “  “Yes?”  “As far as your Lupus goes, you’re doing great.  Most people have died by the time they are 69!” 

Friends and Toastmaster,

I am ill.  I am very ill.  I know I don’t look very ill.  That’s a good thing. I work very hard to NOT look ill and to not act ill.  But the truth is, my body tries very hard to keep me from functioning. 

How can I look this AWESOME when I am not?  Sheer determination at times.  

How many know what an autoimmune disease is?

Do any of you know someone with an autoimmune disease?

What are some of the autoimmune diseases you are familiar with?

Are there other disabilities that you know of that are chronic and invisible?

I have more than one autoimmune disease.  That is not unusual.  Because it deals with the immune system breaking or wearing down it is possible that having one disease can trigger others. 

I have Lupus, Fibromyalgia, and Chronic Fatigue Syndrome.  

Even though I don’t feel normal pain my body does deal with it, so I will tell you that my biggest problem is the CFS.  I hit a wall suddenly without realizing how much pain I’m in.  When I hit a wall, it’s over.  I’m done.  My sister has MS and I recently saw her hitting the wall.  She was visiting and was enjoying her family totally when all the sudden I could see that she could hardly function.  Her only answer was to go directly to bed.  You could have offered her the greatest treasure at that point and it wouldn’t matter.  I’ve felt that debilitating monster but it was sad to see her suffer so. 

What issues do you think we deal with that are not directly related to pain and lethargy ?

1:  feeling judged

2:  Not being dependable

3:  Having to be proactive by always measuring my “Spoons”. 

4:  Easy tasks become undoable

5:  Missing out on important life moments

6:  Explaining which makes me feel broken

7:  Remaining positive

8:  Not becoming the disease

Some days I’m okay.  The smile is legitimate.  Most days I’m not.  The smile is to protect everyone I love.  Sometimes it becomes prideful because it is so dishonest.   People say “Hi, how are you?”  But they don’t really want to know.  Or maybe they do, but how do you know which ones do?  Then when you do find someone to share with and you regurgitate it all…..you immediately wish you hadn’t because now they will see you as the disease.  They may protect you, avoid you, feel sorry for you, or think of you only as your disease.  So why we hate hearing “but you don’t look sick”, we strive so hard to not look sick.  It is such a double edged sword. 

I wear the hairstyle I do because of my illness.  Some days I can’t lift my arms above my head to shampoo my hair, so it is greasy.  Some days I can wash it but nothing more, so it is straight, and has no style whatsoever.  Sometimes it gets so bad that it is easier to go to Fantastic Sams and have them wash it, than to do it myself.  But sometimes it is too painful to do that. 

Who ever thought taking a shower would become my to do list for the day:  I used to not even think about it.  Now, because I am a believer in doing anything difficult in small bites, it is an 11 step process.  Then I go to bed and spend the entire day getting over a shower. 

But these are the negatives.  And this speech is supposed to be inspirational so let me tell you about how I am learning to face my illness, and maybe how YOU can help those you love.  

I had a funeral one day. (Oh Leslie that sounds positive--but it really was) I eulogized the amazing, outgoing, capable, dependable, socially active Leslie.  The one anyone could count on.  The person who would do anything for anyone.  The leader, the mother who could be room mother for 3 sons, team mother for 3 teams, PTA President, Relief Society President, and caregiver all while cooking up the best Banquet dinners ever.  I had to let her go.  It was hard because I didn’t think she was that awesome until she was long gone.  Then I realized how amazing she was.  Isn’t that the way it is at funerals?

Does that sound awful?  It wasn’t.  It allowed me to accept me with flaws and I’m FLAWESOME!  I want each of you to go away from here knowing that your friends who can’t be what they want to be anymore are FLAWESOME too.  Cheer for them, praise them for their efforts, tell them that you love them because they are who they are, not for what they do or can’t do. 

After I accepted the me with limitations I was ready to kick the world in it’s butt my way.  First of all I needed to become a spokeswoman among my friends and family for the unseen people with invisible illnesses.  

Why do you think I believed I should do this?  Because people see me as “Little Sally Sunshine” scattering smiles and hugs.  So the truth might come easier from me than it might from someone who sees the world with a little darker eye.  I might not just be complaining, it might actually be true. (Is it working?)

Also, I am a person who doesn’t accept the darkness of reality I have to find a solution to brighten up the black truth.  I don’t have a research grant, and I can’t cure the incurable disease, but I can figure out ways to live with it, and help those who are living with these invisible diseases.   I can also educate people to be tolerant of those of us who are sick but don’t look sick. 

Last year I had one of my worst flares.  It knocked me upside the head, and down on the floor.  I was visiting my friends and family in CA.  I spent the entire 6 weeks in bed.  Well, I did get up for the really important things and then I got even worse.  I realized that I needed to learn how to survive if I couldn’t get out of bed anymore.  So this last year it has been my goal to find ways of living and contributing from my bed. 

Within reach of my pillow I have tons of books to lift my intelligence and sensibility if I can’t get up.  I have tablets, both paper and device, so I can research, listen to music, write speeches, blogs and keep in touch on Facebook.  Facebook.  Some people deride social media as a waste of time that is pulling us away from each other.  To me it is my connection.  I can keep in touch with my grand kids; Yesterday, two of my granddaughters shared successes in their lives.  I can face time if I can’t be there in person.  I can share positive memes and personal thoughts.  I can continue to scatter sunshine, smiles, and at least virtual hugs. Someone who has really affected my life in a similar way,  is a woman named Christine Miserandino.  She has lupus and administrates and writes for a web site called "butyoudontlooksick.com".  She developed the "Spoon Theory" which gives many of us a way to explain chronic and/or invisible illnesses. I hope you write this down so you can help others.  

When I’m not in bed, when I’m not bad, I have to be proactive always considering that what I do today will affect my tomorrows.  I have to count spoons.  My exercise program at Curves and my walks keep my body moving. I’m always considering eating plans and medications that might alleviate pain or symptoms.    There is never a moment, a time, that I’m not living in Lupus.  But I am not Lupus, Fibromyalgia, or CFS.   I REFUSE to be.

Getting a grip on Lupus is like tying Jello up with a string.  
Imagine that.  
How do you tie jello up with a string?  
You don't.  Just tie a bow with the string, and eat the jello.  

If you know someone who needs a friend, tell them I am available.  Who am I?  I am the new and improved the FLAWESOME Leslie.