30 Things About My Invisible Illness You May Not Know

722629f4aa847cc715c213f8207bd724fight for my health

 

30 Things About My Invisible Illness (AKA: Ehlers Danlos) You May Not Know

1. The illness(s) I live with is: Ehlers Danlos – Classic and Hypermoblility types, Sjogren’s Syndrome, Fibromyalgia, and Lupus
2. I was diagnosed with it in the year: EDS in April 2015, SS in May 2015, Fibro 1994, and Lupus 2002
3. But I had symptoms since: varying symptoms since I can remember.  Usually blown off to being klutzy or clumsy or just awkward.
4. The biggest adjustment I’ve had to make is: having the people I care the most not understand what is going on.
5. Most people assume: I’m making excuses or that I am trying to get out of something when really I can’t do whatever it is that is being asked of me.
6. The hardest part about mornings are: Making sure my daughter is up on time and ready and fed and all that and I haven’t lost my mind in the process.
7. My favorite medical TV show is:  Chicago Fire
8. A gadget I couldn’t live without is:  Those handy squishy things to put over jar lids to help me open them.
9. The hardest part about nights are: SLEEP
10. Each day I take _11_ pills & vitamins. (No comments, please) RIGHT NOW IT’S 11 (TOMORROW I SEE THE DOC)
11. Regarding alternative treatments I:  I absolutely LOVE hot stone therapy.  I can’t afford it but once in a blue moon.  I think most alternative therapies do work for me.  You have to be rich to continue with them though.
12. If I had to choose between an invisible illness or visible I would choose: at this point, I don’t know which I would want…neither!
13. Regarding working and career: I miss working.  I have never really had a career since this hit me so early on in college.  I never got to experience a career.  That makes me terribly sad.
14. People would be surprised to know: There are still a lot of things I would love to do if given the chance.  If able to get pain under control and legs/hips = ability to stand or walk better
15. The hardest thing to accept about my new reality has been:  not knowing from one day to the next how my body will be responding to the weather, or the temperature or the light or sound, etc.
16. Something I never thought I could do with my illness that I did was: learn so much about it.
17. The commercials about my illness: I haven’t seen many here in Minnesota
18. Something I really miss doing since I was diagnosed is: running around, playing hard with my daughter, riding bike
19. It was really hard to have to give up: bike riding
20. A new hobby I have taken up since my diagnosis is: lots of walking
21. If I could have one day of feeling normal again I would: go camping and hiking, canoeing, boating, spend the day with my daughter out in the woods just having adventure after adventure
22. My illness has taught me: slowing down is ok
23. Want to know a secret? One thing people say that gets under my skin is:  at least you are still alive with your daughter.
24. But I love it when people: take time to laugh and joke and treat me like myself, like nothing is wrong.
25. My favorite motto, scripture, quote that gets me through tough times is: …I PRESS ON…..
26. When someone is diagnosed I’d like to tell them:  It takes a little while to adjust, but once you get your bearings, friends gather, new and old, and we stick together like glue and we gotta lotta living to do.
27. Something that has surprised me about living with an illness is:  there are so many supportive people that live far away that are just as supportive as the ones close by.  I love them just the same.
28. The nicest thing someone did for me when I wasn’t feeling well was:  She read to me.  She read me stories, all sorts of stories.
29. I’m involved with Invisible Illness Week because:  Invisible Illnesses need to be made aware of.  There are so many different kinds and so many different ones that don’t get the feedback that others do.  Take time to read about invisible illnesses.
30. The fact that you read this list makes me feel: blessed and honored.  Thank you. ❤

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just thinking

Just something that popped in my head…feel free to ignore

How does one measure “quality of life”?
Do they measure it by the minutes you’re alive?
The days you “walk”?
The days you can eat?
What?

Because as it stands….I don’t feel like this is quality of life at all, but more like QUANTITY of life. Struggling to get things done only to become exhausted by simple things or being constantly in pain is NOT what I would consider QUALITY.

To me, “quality” emphasizes one’s ability to enjoy life–even it’s ups and downs. It means you aren’t wondering if tonight will be the night you stop breathing and your heart stops beating longer than a few seconds and don’t wake up the next morning. It means you can get things done without being half way done because exhaustion or pain hits and floors you. It means you are able to be productive at something for longer than a couple hours (IF you’re lucky). It means not having to beg the Universe or God to PLEASE help. It means not being judged by others that you’re overreacting because your stupid body wasn’t made right. Or even judging because your body just doesn’t work like it used to (which everyone expects you to do or be).

My whole life I struggled to be “normal”; convincing myself that all “this” was in my head. Well, it turns out I *do* have something wrong with my head and because all the evaluations and the doctor appointments, these invisible illnesses are real. I have always been clumsy, always falling down or tripping.  That is how I earned the nickname Grace from my family.

It’s all so frustrating to learn you have lived a lie your whole life and doctors made you think you were “crazy” or a hypochondriac….when in reality—you weren’t/aren’t. And because of that lie, your body suffers the consequences. Everything I ever hoped for or dreamed of was killed in an instant when the multiple diagnoses came out of the woodwork as I have gotten older.  Diagnoses that began when I was 17…and still continue today.   It’s hard not to get depressed when you don’t know where to turn or what comes next. The only thing I do now is go to doctors or stay at home.  I try very hard to keep up with daily living with my 10 year old.  I want her to experience music, nature, art, well, anything  that will enhance her life and help her to learn about the world.  I want her to always know she is loved.  I am pretty sure she knows this.  But reminding her is becoming habit.  There is huge part of me that wants to giver her all the things that I didn’t have growing up.

Limited or fixed income is hard.  It puts a crimp in many activities.  That makes the QUALITY of life more difficult.  I pray and hope that this pain doesn’t slow me down so much that  I can’t enjoy K’s growing up and becoming a young lady.

happiness is

I just want the tears to stop

I just want to stop crying everyday.  I also want the anger to go away too.  One moment I am all tears, the next angry as a bull seeing red.  Why?  the only thing I can think that is triggering this (other than my daughters outbursts recently) is the old fricken tapes in my head.  They are back telling me how worthless and horrible a person I am.  How much of a failure I am.  blah blah blah.

It’s so hard when I have K freakin out because she wants something that she can’t have or do something that we can’t do because there is no money, etc.  She is angry at me because I get angry at her.  It’s like a never-ending circle.  I don’t know where or when it ends.  I get angry because she feels she is entitled to have all the things she asks for and then some.  I am supposed to go and do and whatever when she wants it.  But my wallet and bank account, my body and head just can’t do it.

I am in pain.  Not just this damn emotional pain but the physical pain.  I hate having this chronic pain disease or illness or whatever it is called.  I hate lupus.  I hate fibro.  I am sick of physical pain everyday when I get up.  I choose not to take the benzo’s because I hate how they make me feel.  So I choose to live with the pain.  My fault.

Emotionally I am drained.  On this roller coaster of anger and crying.  Throw in a huge handful of anxiety and I’m a hot mess.  I went to this new psychiatrist today.  Was a total waste of my time.  Basically she said that I should go back to my old doc because she doesn’t have time to treat “someone like me”.  Well, it’s that a lovely thing to say to a person who is on the verge of tears and anger???  So I walk out and call that damn clinic back and ask Susie to get me in with a psychiatrist with the soonist opening.  The soonist opening….3 1/2 weeks away.  But with a different doc than who I have been seeing.  It’s a lady.  I have never had a lady psychiatrist.  I hope she knows what she is doing.  I hope she doesn’t load me up on meds like the past doc.

Why am I so angry?  I don’t get it.  I mean I do, but I don’t.  They are just all so much little things that are stupid to be mad at.  Why get angry at the little things?  Am I just being petty?

  • pain
  • lack of money/no job
  • foot in boot still
  • can’t exercise yet
  • eating sucks
  • k talking back
  • laundry piling up
  • I’m alone
  • no support
  • physically can’t do things I need to get done…cleaning up the balcony flowers and stuff
  • cleaning the apartment, etc
  • getting groceries up the stairs
  • k’s insistence on clashing clothes to go to school
  • k’s constant yelling at me telling me that i am stupid and horrible mom
  • k throwing things at me when she is mad

I probably should be doing a gratitude list instead.  That would be the more Christian thing to do.  But I am tired of being or playing that everything is fine when I am outside….it’s a game out there.  I hate it.  I hate being home too.  I haven’t felt like hurting myself in years….and then yesterday and today…..BAM!!  I haven’t done any cutting or massive pill swallowing.  But my god, the thoughts are there. again.

Epiphany #6 – Emotions

Going more on the epiphanies….here’s number 6:

6. Emotions exist to make us biased.

This discovery was a complete 180 from my old understanding of emotions. I used to think my emotions were reliable indicators of the state of my life — of whether I’m on the right track or not. Your passing emotional states can’t be trusted for measuring your self-worth or your position in life, but they are great at teaching you what it is you can’t let go of. The trouble is that emotions make us both more biased and more forceful at the same time. Another survival mechanism with nasty side-effects.

—————————————————————-

True. True. True. True.  Or at least I thought it was too.  Until…..yeah…until just in the past few months.  I have learned the emotions are not facts.  Well, feelings are not facts.  They are NOT reliable.  The are NOT about what is real about what is going on.  As a matter of fact, they just are.  It is what it is.  I have notices this more so lately as I have been going to this pain specialist for my chronic pain syndrome and fibromyalgia stuff.  He is treating me with some hormone therapy.  Let me tell you…this SUCKS.  My emotions are way outta whack.  I find myself crying at the little things.  Angry at the little things.  Up and down….all over the place.  When I went back to see him last week, I realized that these new pills that he had prescribed to me were making my emotions crazy.  Yes hormones effect your emotions more than you will ever realize.  Doesn’t matter if it’s just your thyroid or period or male ego.  Whatever it is…yes…it all has a play in how you feel.  I didn’t really understand it or “get it” until last week.  Holy shit!  took me 40 years to finally see the light so to speak.  Duh!!

Anyway, you can’t trust your emotions to figure out where you are in life.  They are not true indicators of who you are or what you are doing.  You are more than your tears.  More than your fears.  More than your hurt.  More than your pain.  Even more than your happiness.  There is so much more to you than all of that.  God made you more than just what you feel.

What you value, what you believe in.  When you keep your word and when you follow that path that was meant for you to follow.  That is where you are to be.  Do what you love….Be happy because you can.  Be who you are because you can.  Don’t wait for your emotions to catch up…just do it….because you can…because you are worth every minute, every second of this life.

a morning brain fog: can’t sleep

It’s not just the physical pain that woke me up…well that is what triggered it…..my foot pain is much worse than it should be tonight/this early morning…..I know I over did everything Wednesday.  I had two appointments back to back.  Trying to get in and out of the car with this stupid boot on my foot….I am not supposed to put any weight on my foot….well I did and I am paying for it ….dearly.  And hugely.  My toes are soooo swollen.  They are huge and look like blue fat sausages.

sausage toes 9.18

 

you’d think after having 3 previous surgeries, I’d learn….I guess I just don’t remember it hurting this bad.  Of course the other docs didn’t take bone marrow out of my heel either to put into my other bones and also didn’t have to take out broke screws that were inside the bones to begin with either.  This surgery was messed up to begin with.  The previous docs were idiots…..idk.

so anyway, i took half a pain pill after getting home with K after her dance practice tonight around 6.  then again around 10 took the other half.  went to bed….about midnight woke with stabbing pain, took another half…..and now again…..stabbing pain…..I hate this.  It’s nearly 4am…I am sitting on my couch with the recliner up….my foot throbbing still.  Can’t take another pill for a bit yet.

So’s anyway, I am whining….complaining.  so let me write something worthwhile to read about if I can.  Let me pick my brain to see if it’s awake enough to come up with something  LOL

—————————————–

My mind is in a fog, when you are depressed it is almost a tangible thing, like a person. Something you expect to come up behind you and tap you on the shoulder. But when it does, you turn around and find yourself looking in the mirror, because that is all it is, you.

Some days the tears just feel like they want to come out on their own. I do not have anything to cry about, I am happy; life is good. Yet at the slightest inkling of something, I feel the tears coming. It does not matter what it is, just cue the waterworks. I call it my leaky eyes.

Sometimes little things bring it on, like lack of sleep or more importantly a change in routine. Routine is important for someone like me, so depression brings eating the same food over and over, watching the same movie on repeat. Which is how I feel most of the time, sort of like life is on repeat.  Even the change in the weather will do it to me.

Nevertheless, I carry on, move forward with life and try not to isolate myself from the rest of the world in the process. It is tough, like walking through a thick mud when you try to move. Still I’m left to carry on where I left off the day before.

I have a list a mile long of things to be done. Okay, maybe not a mile long, but for me a very long list. I am lucky if I get the top few things on that list done which are typically the easiest things, before I shut down. However, it is what I have do, day in day out. Trying to accomplish as much as I can before that magic moment when I hit my proverbial invisible wall and cannot find the will to continue.

With chronic pain, chronic fatigue, fibro, and a recovering with a broken foot, my list keeps getting longer and my proverbial wall keeps getting taller.  My frustration gets more and more insurmountable.

Most people have at least one person, a spouse, significant other, close friends, relatives, etc that live pretty close to them that are readily available to help and go to bat with and for them.  Well, I have my mom, 2 hours away, who came to be with me and K for my surgery and to stay for a couple days then left to go on her trip to Tennessee with her cousin.  I talk to her daily while on this trip…she checks in to make sure I am ok, but that doesn’t help me physically with this challenging time.  Where is everyone else?  No clue.

I do have relatives in the area.  Probably less than 20 miles away or so.  But I have not heard or seen anything from them.  Pretty sure they know I have had this surgery.  I know they know about my other stuff going on as well.  They do know I am a single mom.  Anyone help out?  Nope.  Have I reached out?  No.  Should I have to?  I don’t think I should have to either.  You would think that people would know from having other friends and family in their lives that sometimes folks just need others.  Maybe I am naive or have too high of expectations.  I don’t know.  Maybe I think they need to be mind readers.  Maybe I do need to call them.  But then that is a risk of me making them feel like I am putting them out.  Would that guilt them into coming all the way over here to help me?  Would that put a crimp in their busy day of doing their family stuff?  I don’t know.

Yes, I am afraid to ask.  I am afraid to ask for help.  Because I have been turned down so many times that I don’t want to bother anyone anymore.  I just do it all by myself.  The only way to get it done is to do it myself.

I don’t know.  I do have friends that would love to help me….but they live states away….Washington, Kansas, Arkansas, Texas, Iowa…etc.  But here I am in Minnesota.  I have friends across the Cities and haven’t heard from any.  Hmmmmmm…….I don’t know.  I just don’t know anymore.

 

 

 

 

Repost from another blog: Very Important

I am re-posting this  from another blog regarding lost friendships from having a chronic illness be it fibro, chronic pain, anything really.  I can really relate in so many ways.  She wrote this very well. Very well.  Thank you.

You can find it here:  http://chronicpainjournal.wordpress.com/open-letters/dear-friend-i-am-still-here/

 

Recently, I have been thinking about the friends that I have lost over the past 8 years. I am sure that my fellow Painies have the same experience. As a woman we hold our friendships almost sacred. We share innermost thoughts, secrets and demons. We can share a look over a dinner table and burst into laughter over an inside joke. We can sit in silence and knowing exactly what needs to be said or done – without doing  or saying it – and we know everything will be ok. I had a friend I never thought I would lose because I was sick. Recently, I saw over a social media network, she is socializing with another friend I lost to my illness. It made me sad. It made me lonely. It made me miss who I was. It made me mad. But mostly it made me want to scream. I am still here. I am still me under the pain. I am still here.

Painies have to sacrifice a lot to this condition. We’ve lost friends, family, spouses and children to this condition. Even those who have had bouts of pain and bounced back – seem to forget what it is like. Pain is invisible, not believed or understood. Those who surround us, don’t see what going to a movie can cost us. They don’t see us pacing around for hours – counting the minutes – waiting for it to stop. They don’t understand the deep sadness we experience because we can’t go to social events. They don’t comprehend the shame we feel for being weak, for being less than. That we stop reaching out, because we are afraid of getting our hands slapped. Yet, underneath all of this….we are still the people we were before the Pain. We are still valuable, vibrant and for some inspirational survivors. We are worth being friends with. We are worthy of kindness. We are just as worthy as those who don’t have invisible illness.

For those of you who have Painies in your life. A friend you haven’t talked to in a while, remember they are still there. No matter what the Pain has robbed of them, their very essence still exists and needs to be acknowledged. We as a  Painie Community understand  we are not always fun to be around and we may make you fearful. Please also understand that we don’t expect you to cater to or exclusively care for us. We just want you to remember –  we are still here.

Our very person is not completely defined by pain. It is part of us, it creates an environment that limits us and makes it more challenging than other friendships. I can’t speak for all of us, but I think I can speak for the majority;  all we want is a friend. Not a caretaker, a friend. Someone to laugh with, share secrets, watch a movie, gossip and just be. That can be done by phone calls, emails, quick lunch visits or coming over for a coffee. It isn’t much we ask for.

While I felt this letter important for me to write; I also want to mention that out of this illness I have been given the gift of true meaningful friendship too. I have found some very wonderful people, who treat me like me, not the crip. I also have nurtured and developed old friendships, which have been so rewarding. I have met some of the most amazing people through my Painie community, who provide me with hope, understanding, empathy and support.

So I thought I would write an open letter to a Friend. You can substitute your experiences with the ones written here. You can pass it along.  Lately I have been remembering my life before kids, being at home full time and disability… and because I need to feel like I am still here. That I am me, not my illness.

Dear Friend,

I sit here 8 years into a disability, I never thought it would be this long. I miss you. I miss me. I miss the person I used to be. Lately, as I slowly creep towards the light at the end of the tunnel, I am trying very hard to get her back out….because I know she is still here.

I know your life is different. You don’t have children. You have a big job. You travel to exotic places. You to meet lots of famous and interesting people. You live in a more urban setting than I. You have parties to go to, cottages to visit, people to dine with and people to talk to. You have a full and busy life.

I live and work in my home. Almost all of my daily energy is absorbed my making sure the kids get to school, eat, have clean clothes, sleep, go to activities. Then my small energy stores go to cooking, cleaning and working. The rest – God love him – goes to my husband. By the end of the day I am so tired, physically, that it is all I have to give. But that doesn’t mean that is all I want to give.

I can’t go to restaurants, bars, clubs, museums or anywhere I would have to sit, stand or wait for any length of time. Although money is an issue, it is not the only one.  I don’t want pity. I don’t want to be ashamed. I don’t want to hold you or anyone back. I don’t want people to see me looking like this. I also will pay the price for days after and there is only so much I can give. At the same time, that doesn’t mean I want to be alone. I am still here.

I have heard of you visiting other people’s’ children in the hospital. I heard you stay with a friend for a cosmetic procedure. I read all of the visits and time you have spent with those who have needed help. I don’t begrudge those people anything, at all. I just know I am still here too, and when did it become that I meant so much less.

I don’t really know what has happened. I am not sure where I have gone…but I do know ..I am still here.

I am still the girl

  • who snuck into the Boys’ school with you, while we laughed “They brushed their teeth!!!”.
  • who drove to Boston on a whim
  • who held your hair while you let out the night’s debauchery
  • who would spend a Saturday doing her own abdominal workout
  • who danced in your bedroom to vinyl
  • who was the first on the dance floor with you at school dances
  • who was there for your first heartbreak
  • who laughed at you, as you provided much comic relief during my mine
  • who remembers the day she met you,
  • who danced on tables in bars with you
  • who danced on bars with you
  • who danced anywhere with you
  • who spent a good down payment for a house in certain Toronto Drinking Establishments
  • who went to movies, watched movies, rented movies and discussed hundreds of  movies for over 2 decades
  • who stood with you while you got married
  • who had you stand next to me when I got married
  • who held your hand when your marriage ended
  • who understands you buy more sheets than anyone I know and probably have about 100 different party dresses
  • who knows you order your breakfast in a very particular way
  • who knows you cannot survive without coffee and a lot of it
  • who knows you tap your lip to find out if you have had enough
  • who gets the logic that if you smoke organic or special smokes that it is better for you
  • who knows what your last meal would be if you had to choose
  • who knows you
  • who chose you as family
  • who never thought her children wouldn’t know you

I am also the girl who:

  • still loves “Cherry Bomb” JCM and “You’ve Got a Friend” JT
  • still needs to laugh
  • has a sense of humour
  • has other things to talk about than my disability and my children
  • is holding on to the girl, who changed her hair cut when she changed boyfriends – which was a lot (me) and the girl who changed her hair colour with no rhyme or reason (you)
  • speaks her mind…although it is not always welcome.
  • misses who she used to be
  • wishes, more than anything sometimes, she could take a 48hr vacation from this pain and live her old life
  • is so very tired of feeling like a chore and not worth the smallest amount of time or effort
  • wants to grab some moments in time back – where she could be free for a moment – and sometimes that is just reminiscing with an old friend who knows you better than most.
  • is still more than a mother, wife and disabled crabby pants
  • is still the teenager, the twenty something, thirty something and now forty something – all wrapped into one
  • wants to scream, rant, rave and rage against the crappy hand I was dealt with my body
  • wants to smash things into little pieces because of all the things it has stolen from me – my family, my friends, my work…….and some parts of me
  • will fight this disability with everything I have got – which is a lot
  • wonders what made you stop trying
  • wonders what made you too busy to return a phone call
  • still needs an old friend
  • still needs a comfortable conversation, where things don’t have to be sourced and sentences are finished for me
  • still needs a shoulder
  • still needs someone to catch me….just once in a while

I guess I don’t understand what happened to me. The pain was and is sometimes consuming…..It has been eating into my body; to the point I was told in the Fall, if I didn’t get better….I wouldn’t see 50. I didn’t tell many people that – other than my obvious Painie group. My days have been filled with existing for almost a decade, to get through it the best I know how. This meant, I couldn’t do all the things that maybe you needed me to do. Maybe, you just became bored of me..pain is boring. I get that. I guess, you were the last one I thought wouldn’t ever have any time for me at all.

I know that at one of the worst times of your life, was the best time of mine. I was having a baby, got married, bought a house and had a great job which required a lot of travel. I felt uncomfortable discussing any of those things with you, because I didn’t want to hurt you. I wanted to include you in as much as possible without any wounds. Maybe I didn’t do a good job of that. Maybe you felt I had left you then. If so, I am truly sorry. That was not my intent. I just didn’t know how to balance your pain with my happiness.

After the second year of the pain; I know I stopped trying. I couldn’t hear anymore about other people getting time, when I did need you so very much. Selfish? Immature? Ridiculous? Maybe…..most probably. But as you know, I have limited family support, and I thought of you as my family. I had already lost 2 friends to this…..my heart really couldn’t take anymore loss. So. I stopped trying…that is on me.

I also couldn’t understand why phone calls stopped being returned. Every invitation was avoided, cancelled or just not responded to at all. Even recently, you saw a common friend and said “How are the girls? I have been so busy, I just don’t have the time to catch up.” When did that happen? When was there no time for our friendship? I lost my footing on that one.

There are some friends you don’t think you lose. Maybe you misplace them…..I am not sure. Every relationship has dips and arcs. Some of the friends I lost during this illness, did not surprise me.  I just didn’t think I would lose you. It makes me sad. Because I am still here and I know you are still there too.

I know my situation is long term. I don’t know when it will end or if it will. I don’t know if tomorrow I will be vomiting all day from pain. I don’t know if I will be able to drive the car. I know that it is difficult to empathize with my situation. Honestly I am glad it is. I wouldn’t wish this on anyone. I know I cannot offer nights of shooters and dancing. Or dining and walking. Or shopping all day. But I can still talk…I am still here.

I sometimes look at myself very hard in the mirror, dig deep and  try to capture a minute piece of what I looked like before. Who I was before.

I want my life to be more than Dr.s appts, medications, tests, hormone therapy, physiotherapy, etc. etc. I also know that my life is more than that. I am still here.

I want to be able to get an invitation and know for sure that I can go. That I won’t let my husband and kids down again. That I can volunteer at the school and really do the best job possible. That I can book a day to Grocery shop and it not be a window – where I feel ok – get as much done in this time as possible so I won’t fail everyone again. Then I do too much – suffer and yep – fail again. It is hard being a Painie. You are always falling down, you are always failing and almost all the time – you alone can get yourself up. Not only do people not know how to pick you up – but you stop letting them too. Just another person you have let down. Or if the person you thought would pick you up is not there – it hurts more than sometimes we can bear. It is a feeling of helplessness, loneliness, loss, shame, fear and self hatred that only us Painies could possibly understand. Why? Because we know, that if we didn’t hurt – inside or out – we wouldn’t need anyone to pick us up and we could do the picking up instead. We know that we are only strong in certain increments – not as a whole being. But we are still here.

I am not sure why I felt I had to write this letter now, maybe as I am pulling myself up from the wreckage and the kids get older and I get older, I am able to expand my focus. As I reduce my medication (eliminated 3 and have reduce pain meds 50% and migraine meds 75%), have a bit more mobility and now some of the flab is melting from my butt…….I can see that I really am still here.

Every once in a while we all have to stand up and scream, shout or yell. I am still here. Every once in a while – I speak something maybe I should keep to myself. I know from my other Painies that we share the same loss of friendships. I have been blessed with so much in my life. I don’t feel sorry for myself. I just thought I knew the friends that I surrounded myself. I knew the ones that needed me and would never give me back anything of substance. I knew the ones that were toxic. I knew the ones who have been good to me. I guess I thought I knew you and I never thought that 23 year old street youth (this is an inside joke to readers), would be 40 something strangers.

I do wish you well. I do love you, like I would love a sister. I hope you are happy. I hope your friends are good to you. I hope you have a lot of love in your life. I hope you have a lot of laughter in your life. I hope you see exciting, new things. I hope you find a true, true love. I hope your family is well and good.

I hope you are still there too.

Invisible Illnesses

I have Lupus and Fibromylgia and a few others that are hard to explain but they are all dubbed “invisible diseases”.

I had heard of the Spoon Theory in describing what it is like to have these invisible illnesses but didn’t totally understand.  So I googled it and found what I was looking for.  Thought I would share it with you all.

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino