Sept. 30th, My Visibility Day

As a person with an invisible illness/invisible disability, I often get funny looks when being visibly disabled in public.  We have all heard stories of the notes left on cars parked in handicapped spots claiming “where is your wheelchair.”  I have often wondered if I needed to start wearing a sign in pubic to get any respect.  I already developed some print-at-home cards to hand out to the particularly uneducated, but most people are not bold (read: RUDE) enough to question me openly.

On the days that I can function–at least to the average viewer–as a normal person I often wonder how many people around me are doing the exact same thing.  I look no different than any other person on the street, but only because they cannot see the hundreds of things going on in my body and behind the scenes to make me appear that way.  How many people do I pass on the street that are fighting a battle like mine, putting on a facade like me, to get though the day.  According to the statistics, one in five in the US has a disability– so I probably pass by several everyday, none the wiser

So September 30th, 2016–the Friday of Invisible Illness Week–is going to be my Visibility Day.  The day when I walk around with a sign on, or at least what most of use as our own personal billboard–a T-shirt.

As a person with an invisible illness, Invisible Illness Week has always had a spot in my heart.  Whether it is an invisible physical illness/disability, invisible mental illness/disability, or invisible learning disability, many of us struggle for the recognition and validation of what we go through.  It is one thing we have even common, even if how it affects our lives is completely different.  A week where we can come together and share our struggle together, even if it is the only struggle we share.  It is entirely possible I am the only person in my small town that struggles with dysautonomia, but I seriously doubt I am the only one that struggles with an invisible illness/disability.

So I want a day where I wear the struggles of my life on my sleeve–literally.    I plan on making a shirt with my conditions listed on the front (Dysautonomia & Endometriosis), probably using a hashtag, (cuz we live in a twitter world) and in the color of Dysautonomia since I feel it has the most affect on my life.  On the back, I plan to put “Dont judge a disability by its visibility”.

And I encourage anyone else who wants to have their own visibility day to join me.  Make your own shirt, or wear an awareness shirt you already have.  Make you own on a site like cafepress or zazzle.  Buy iron on letters or the print and iron t-shirt kits.  Heck, take a sharpie to a goodwill shirt.

Whether you have Dysautonomia, Depression, or Dyslexia.  Whether you have Autism, Anxiety, or Angina.  I hope to see you repping your colors and your conditions on September 30th.

*Note-While not all invisible illness are an invisible disability, and vice versa, there is a lot of overlap. So for the purpose of my visibility day, I am including both of them.

 

My Mobile POTS/Dysautonomia Bag

To say that chronic illness requires you to make some adjustments in life is a bit of an understatement.  Each individual must learn how to adapt to their new situation, something often easier said then done.  As it turned out, My type A ‘must plan everything’ personality is not particularly compatible with having a condition like Postural Orthostatic Tachycardia Syndrome.  The last several years have been a lesson on learning to live in the moment and realizing plans are made to be broken.

    

That said, some vestiges of my ‘plan down to the minutest detail’ personality still survive.  As such, I have a “POTS Kit” I try to keep with me at all times–because, as we all know, stuff happens.  This is somewhat easy for me as I have always been a “big purse” girl.  As such, I have a lot of space to work with.  So, here is what I keep in my POTS kit, which fits into my purse, backpack, messenger bag, or whatever I am using to keep my stuff on me at any particular moment.

 

Contents:

• Wrist Blood Pressure Cuff
• Pulse Oximeter
• Powerade Zero Drops
• Pedialyte Sticks
• Elete Electrolyte Drops
• Thermotabs (blue pill box)
• 3 Day Supply of all my medications (My Pills box)
• Back-up Medical ID
• Medical Journal Summaries of my Conditions (not pictured, kept separate in purse pocket)
• 8 oz bottle of Powerade Zero
• Mini bottle of tums (for those bad tummy times)
• Wisps mini disposable toothbrushes (for when bad tummy times come up for a visit)

Do you have a portable “kit” you keep in case of emergencies when out and about?  What do you keep in yours?

Invisible Illness & Invisible Disability Signs

For those who follow my blog, Pinterest, or Facebook page, you have probably already seen these.  When I first had the idea to create some home-printable business cards for awareness, I wanted something that got the point across that even though I look fine, I have a disability.  The wheelchair, of course, is pretty much the universal sign of disability.  The problem is, I do not often have to use a wheelchair.

On my worst days, yes, I may need a wheelchair.  Other days, I may use my rolling cart with a seat.  Still others, I may be perfectly fine just walking by myself.  Dysautonomia is like a box of chocolates, you just never know what you are going to get–it can vary from day to day, hour to hour.

However, that reality does not fit well in to  society’s perception of disability.  You either are or are not disabled; no one believes it can be a transient state.  Yet for millions of those with chronic illnesses, it CAN be a transient state, or at least a varying one.  People don’t understand why one day you can be at Nordstroms shopping like a normal person, and the next day at Walgreens in a wheelchair.  And without one of the universal signals that conveys a reason for needing assistance (e.g. grey hair or an appendage in bandages) one is likely to get strange stares at best, and nasty comments at worst.

At one point, I was actually considering buying a walking cast to wear when I felt I needed to use a wheelchair or mobility cart at the store.  If I was wearing one of those (despite the fact I did not actually NEED it) I was unlikely to be bothered or questioned.  I never did buy the walking cast, mostly due to the expense, but also because I felt I should be strong enough to defend myself and my invisible disability.  Yet I found myself just avoiding leaving the house all together; the thought of possibly having to deal with mean, ignorant people while also feeling like crud was just too much.

Thus, began my search for an image that conveyed that though I look “normal,” I have “unseen” issues that affect my abilities.  I did not want something sarcastic or confrontational, even though I could definitely identify with those sentiments.  And I did not want to go into too much detail about my particular condition.  I wanted something professional, quickly identifiable, and universal.  Because, sometimes, I just don’t feel like explaining my entire medical history since no one has ever heard of what I have.

Best I can tell, there does not seem to be any universal symbol of invisible illness or invisible disability.  There are some for individual situations–such as hearing impaired or blind–but nothing for a general “my body just does not work right.”  I really like this one:

But A) the image was intricate enough it did not work well as a small image on a business card and B) it still used the wheelchair, something that not everyone with invisible illness and disability uses.  Thus, I made my own.  Working with symbols that already had widely known meanings, I decided to put the Rod of Asclepius (not to be confused with the Caduceus) into the widely used signs for Man and Woman.  I probably could have just used the Man symbol, as it seems to be the default, but as a woman with an illness that most often affects women, I just kind of liked the idea of a gender specific one.

I spent a lot of time trying to decided whether to use the Rod of Asclepius or something else.  I even focus grouped it on a couple of my chat groups.  While not all invisible disabilities are thought of as “medical” in the same sense that most invisible illnesses are, it seemed to me that a lot of them were at least biological in nature.  Thus, I felt that Rod of Asclepius was the most representative symbol that was widely recognizable.

So, a little paint action later, I had my symbol.  I made one for both Invisible Illness and Invisible Disability, as I know some with chronic illnesses have issues with the “D” word (I know it took me a long time to embrace it).  I made generic ones, both man and woman.

And later made versions that also include mentions of specific conditions so I could continue to raise awareness for both my condition and invisible disabilities/illnesses in general.

I keep the ones I have made on my Pinterest page, and have posted a few of them here.  While I don’t ever expect them to receive wide-ranging recognition, anyone who wants to is free to use them in hopes of conveying their situation to others.  They are available free of charge for personal, non-commercial use.  Any other uses, please contact me first.

Also, if you are interested in a sign with a disease or condition not already available on my Pinterest page, please feel free to message me or comment below, I would be happy to make it for you.

STUFF Post–Medical ID Bracelets

I frequently see individuals with Dysautonomia, and chronic illnesses in general, asking if they should be wearing a medical id bracelet.  While it is an individual choice–between you and your doctor–I personally chose to wear one.  In case it hits the fan, I want the medical team working on me to A) know some basic information about what I have and B)  know how to contact my regular Doctors since it seems pretty much nobody knows about Dysautonomia.

So, here is the first in what I am calling my STUFF postings.  Listings and links to stuff I have seen mentioned, recommended, etc. in relation to dysautonomia.  Just because I link it, does not mean that I have tried it or endorse it–I only review things I own or have tried (see the reviews section).  This is mainly to serve as a collection of possibilities and nothing more.  If you know of something you think should be on this list, please feel free to add it in the comments.

Special note about medical id bracelets:  recently I had the chance to speak with a couple local EMT’s and firefighters.  I asked about regular medical Id’s vs. more interactive ones (web-linked, phone-in, etc.).  While this is opinion of just a few, they mentioned the traditional ones are more useful for them in the field (unlikely to scan or call in from the ‘bus’) but that the medical team once you get to the hospital may find the interactive ones most useful since they contain much more information.  They also mention that as medical alert jewelry looks more jewelry like, they are also more likely to mistake it for jewelry and not notice it.  Their advice–we know they are ugly, but the more obvious that it is a medical id bracelet, the better. 

 

Traditional Medical Id Bracelets/Jewelry

• Vital ID  (see review)

Uses small folding paper insert instead of engraving for medical information

https://www.vitalid.com/product-category/medical-id/

• Sticky Jewelry

Large selection of pre-printed and engravable medical jewelry including bracelets, necklaces, and charms

https://www.stickyj.com/medical-alert-jewelry

• Lauren’s Hope

Possibly one of the largest selections of medical jewelry on the internet.  Mostly engraveable.

http://www.laurenshope.com/

• American Medical ID

Engravable bracelets and necklaces

http://www.americanmedical-id.com/

• Road id

“sporty” engravable bracelets and shoe id’s

https://www.roadid.com/Common/Catalog.aspx?C=RoadID

• Creative Medical Id

Engravable bracelets, dog tags, charms and watches

http://creativemedicalid.com/

• SOS Id via Keep Safe Jewelry

Insert that folds into compartment on stainless steel bracelet

http://www.keepsafejewelry.com/sosid.htm

• ID on Me

Insert that fits into compartment on bracelets, key rings, or tags

http://www.idonme.com/index.php

•  N-Sytle ID

Engravable bracelets, necklaces, dog tags & charms.  Has a free template for a printable wallet card

http://www.n-styleid.com/

• Mediband

Specializes in silicone medical ids. Many pre-printed, but also have the ability to make a customized one.  Has multiple language and engravable jewelry as well.  Can add a separate MedibandPlus membership (see below)

 http://www.mediband.com/us/

•  Hope Paige

Mostly engravable medical id jewelry, including the ability to design your own.  Has a few silicone/write on bracelets as well as the 4id line that includes some unique write on medcial ids.  Has a few pretty neat accessories as well as a large selection gears towards kids

https://www.hopepaige.com/

 

 

 

 

Interactive Medical Id Bracelets/Jewelry

• My ID Square (see review)

Uses individual QR code and/or website with pin # to link to medical information website.  Includes lifetime membership with Squid purchase (no yearly fee).  Also carries traditional medical tags and “clip on” medical charms.

http://www.myidsquare.com/

• Medic Alert Foundation

Bracelets and necklaces have 1-800 number that connects to 24/7 operator center with your medical information.  Purchase includes one year of telephone service, renewable for a yearly fee after that.

http://www.medicalert.org/

• My ID by Endevr

Uses either a QR code, phone number, or website with pin # to access medical information.  Purchase includes one year of service, renewable for a yearly fee after that

http://www.endevr.com/id-bracelets/myid

•  MedibandPlus

Subscription gives you a code to access your medical conditions, allergies, medications, blood type and immunization records at MedibandPlus website. Also has contact info for physician(s) and emergency family and friends.  Yearly fee starting at $7 for personal or $35 for family.  Note: Australian company, so phone customer service is on Australian time.

http://www.medibandplus.com/

 

 

Note: I have not included any medical id jewelry that uses a USB to store medical information.  I have been informed by several sources that many medical facilities now refuse to insert foreign USBs into their computer systems over fear that they may contain viruses or identity theft malware. 

 

Did I miss one?  Please add it in the comments below.

 

 

Dysautonomia Educational Business Cards

Ok, so I have been super MIA for the past year.  Ended up trying to go back to work, but that did not go well.  I am now back to not working while trying to get my symptoms and my life back in order.  However, the extra recliner time has given me a chance to get back to my blog and back to some other projects I have wanted to start.

One of those projects I have been working on is a business card that I can hand out at times when people are curious (or, let’s face it, sometimes downright mean) about my limitations.  People have a hard time imagining that someone under 30 could have an illness that leaves them with significant limitations, but still look perfectly normal.  It is the bane of the Invisible Illness crowd—“but you don’t look sick”.  Chronic Illness Memes abound about how hurtful, dismissive, and downright rude that saying can be.

 

(Sorry for the blurry pics)

Yet, I hear a story at least once a week–via the news or in my chat/Facebook groups–about another person with invisible illness or invisible disabilities being accosted for parking in a handicap spot (with a legal placard), using wheelchair or mobility carts at stores, etc.  It is a tough spot many of us will find ourselves in a one point or another.  While I am lucky that all of my inquirers so far have been kind and curious, I have caught the judgmental stares on the faces of others.  I know it is likely a matter of time before someone confronts me in a not so friendly manner.

When I imagine this likely confrontation, I can envision two scenarios of how I would react.  In the first, I start crying on the spot, or hurriedly try to make it back to the car before crying.  In the second, I get really mad and starting yelling.  Neither of these reactions are likely to result in positive outcomes, either for the ignorant commenter or my heart rate and blood pressure.

Now, when the inevitable questions come, I hope to just reach into my purse and pull out one of my business cards to give them.  If they are mean, I can hand it to them and walk away—biting my tongue if I have to.  If they are friendly, I can stay and inform them about Dysautonomia/Invisible Illness, yet still leave them with something they can take home and follow up on.    A lot of my life now comprises being prepared for when things go wrong (I keep a Dysautonomia “kit” in my purse at all times) so this is just one more thing I want to be prepared for.

So, below are my homemade business cards.  They are in a pdf for anybody who wants to download them and print them for their own personal, non-commercial use.  I also have them in a Microsoft Word template if you want to customize them to your own particular situation—contact me if interested.

I also have a collection of both Invisible Illness and Invisible Disability signs posted on my Pinterest page.  Will probably end up printing up one of the Dysautonomia Signs as a sticker to put on my wheelchair (also and Avery print at home kit for that as well!) Once again, feel free to use for personal, non-commercial use.

med cards front 2

med cards back 2

 

How to Print at Home Instructions:

These cards are formatted for the Avery Business Card Template 8371.  The kit I used is the Avery White Business Cards 100 count for Ink Jet (28371), approximately $4 at my local Walmart.  I printed them using my personal inkjet printer (aka, these are not professionally printed)

The template comes in a front and back form.  Remove all other paper from your printer and run though once printing the front of the cards template, then flip over and print using the back of the cards template.

This allows me to print 10 business cards at a time.  I prefer this flexibility in case I want to change information on the card at a later date.  It also means I can print a small quantity without needing to engage the services of a professional printer.

Note: The back of the card has a QR code that is linked to the information page of the Dysautonomia International website.  Most smartphones already have or are able to download a QR scanner for free in their respective app stores.  However, those of us still working with “dumb” phones (raises hand) may not have access to it that way and would need to go home and get on the computer.

30 Things You May Not Know About My Invisible Illness

So, this week in Invisible Illness Awareness week, and there is a 30 things meme that has been going on for a couple years.  I find these interesting and like to read them when it comes around each year.  So, this year, I have decided to throw my hat in the ring and do one.  It is probably a bit different that many others, for reasons that will probably become obvious once you read on.  But I hope it helps me as well as helps others, since many people seem to get a real sense of peace and purpose from sharing their story.  Not sure if I will continue blogging after this, I guess I will just have to call it as I go.  Anyway, here we go

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is: Autonomic Dysfunction, also called Dysautonomia.  Specifically Neuro Cardiogenic Syncope (NCS), Inappropriate Sinus Tachycardia (IST), and suspected POTS (Postural Orthostatic Tachycardia Syndrome).  Basically, my heart rate and blood pressure are all over the place.  I can feel dizzy and lightheaded one second, like I am having a panic attack the next.  Many other symptoms too numerous to list, so you will just have to google it.  Also, Endometriosis—which causes mostly pain and crazy hormones.  More are potentially on the way-Docs still trying to figure it all out.

2. I was diagnosed in the year: Endometriosis was 2003, first accurate diagnosis for AD came in 2012, more coming in since then.

3. But I had symptoms since: Endometriosis since 1995, Autonomic Dysfunction since 2011

4. The biggest adjustment I’ve had to make is: Letting others do things for me, stuff I used to be able to do myself.  I have to have my husband carry anything heavy.  I have to let other people drive me.  I have to ask some else to go get things out of the basement because stairs and I are now mortal enemies.  So many things I used to do myself, but now have to ask for help with.

5. Most people assume: that there is nothing wrong with me and that I am just anti-social.  I have told very few people about my problems, and I instead I will just miss an event, or suddenly slip out early, etc.  I will probably be rather quiet and sitting in the back, where I can make a quick escape if necessary.  Almost no one realizes that the reason I am not chatting is that doing so can make me light-headed, or maybe I am trying to use controlled breathing and focus to bring down my heart-rate.  Or my endometriosis is flaring, and it feels like every muscle from my chest down is cramping.  Or if I have gone Hyper, that the smell of your food, or the bright lights, or the level of noise is high enough to send me into sensory overload.  And while not classically painfully, sensory overload is still very, very unpleasant.  Generally speaking, very few people know how to spot the signs this is going on–a particular chest arching when I get a run of tachycardia, a slowed movement from pain or muscle weakness/fatigue.  Generally, I just get  lumped into either I’m mad or antisocial.

6. The Hardest thing about mornings:  I hate mornings, with a passion.  Mornings are on my hit list, along with stairs and bending over.  It takes a couple hours of meds and hydrating to get me physically up to doing anything–and that is on a good day.  I would prefer that I never do anything until at least noon.  Trying to get ready and out the door against an early deadline (early church, school drop off, etc.) is one of the fastest ways I know to trigger an episode.  Go too hard too early, and you will at minimum ruin the rest of the day, and at worst spend next several weeks trying to get it back under control.  My problems with mornings are one of the reasons being able to work a job is such a problem.

7. My Favorite Medical Show:  I use to really like House, but I don’t watch it or any other medical show anymore.  House becomes a fair bit less fun to watch once you start recognizing the diseases they are testing for, because you have been tested for them too.

8. A gadget I could not live without: My laptop/ipad.  My laptop is on its last leg, poor thing, but we somehow keep putting it back together.  On bad days, my laptop/ipad is pretty much my only connection to the world, and my only thing to do for entertainment (we are cord-cutters).  And when bad episodes can mean you don’t leave the house for over 2 months, that connection to the world becomes pretty important.  Plus, it has allowed me to connect with other AD and endometriosis patients, which has been invaluable.  I have only once had a chance to meet others in person that have AD, and it was incredible.  But there are so few of us out here in the Midwest, using the internet to find each other is about all we have.

9. The hardest part about nights are: Probably the insomnia.  The insomnia SUCKS.  It can be a true insomnia (once did not sleep for 5 days) or it can be an inability to get into a deep, restful sleep so you end up feeling like you did not really get any sleep.  And when you are up, unable to sleep, you have lots of time to think about and contemplate how your life has changed and an uncertain future.  Sometimes the silence can be overwhelming.  But, at the same time, if I have gone hyper and the noise, smells, and lights are uncomfortable, night is usually the only respite.  So it can be a double edged sword.

10. Each Day I take 7-9 pills and vitamins.  I have prescriptions for many more, but I try not to use them unless it my condition has really hit the fan.

11. Regarding alternative treatments: I use compression hose, eat lots of salty stuff and have to drink 2-3 liters of day of PowerAde/salted water.  I need to find the special exercise program for AD that I have been hearing about.  I have not really tried any other alternative treatments, but would not necessarily be opposed.

12. If I had to choose between an invisible illness and visible illness:  Yeah, this is a hard one.  They both have their pros and cons.  When you have a visible illness, at least people believe you, and I imagine you get faster treatment, because they can figure out what is wrong with you.  But, because it is visible, everybody knows you have it, and I imagine a lot of people define you as an illness before a person.  With Invisible illness, it can be very hard to get people to believe you (including doctors) and, if it is a rare disease, you can spend forever just trying to find some relief from it.  But, sometimes you can also “appear” normal, and for a little while pretend that your live a “normal” life.  I am not sure I can answer this one.  Being on the invisible side, of course the visible side is greener.  But if I went over there, I don’t have a lot of faith I would not think the invisible side is greener.

13. Regarding working and career:  Yeah, I used to have one of those.  Currently do not, and not sure I ever am going to again. And I have doubts that if I got back to working, it would ever be more than part time.  On good days, yes, I could probably hold a job.  But you just never know when a bad day is coming or how many bad days you are going to have in between good ones.  Combine that with my affinity for mornings, and your result is unemployment.  How do you hold a job when uncertainty is your reality, especially in this competitive job market?  I need to learn some sort of trade—sewing, wood working, etc.—that I can do at home on my good day and try to sell it esty or something.

14. People would be surprised to know:  I carry a lot of guilt.  I did not cause my illnesses, but I feel guilty never the less.  I don’t feel heroic and brave for facing this.  I feel broken and defective and like I am a burden to those I care about most.  I feel guilty that I make my family miss good times.  I feel guilty I make them take off work to drive me to the doctor.  I feel guilty money we need for a new car or a house down payments goes to my doctor visits, medical procedures, and prescription drugs.  I feel guilty that on bad days I cannot even clean my own house or take care of my own kid.  And I know I should not feel guilty—I would not feel resentment if the situation was reversed and I was helping them—but I still feel guilty.  Then I feel guilty for feeling guilty.  It is a vicious cycle that does quite a number on one’s confidence.

15. The hardest thing to accept about my new reality has been: Letting go of the picture in my head of what my life is/was supposed to be and accepting the uncertainty.  I knew how many kids I wanted, the house I wanted, the career I wanted.  I had a plan for when I would have it and what I needed to do to get it.  My path was in front of me, and I knew what I had to do.  Yeah, pretty much all of that has gone out the window.  I don’t know what my future is; I don’t know if I can have more kids, or even if I can, if I should.  I don’t even know if I am going to be around long enough to see the kid I already have grow up.  I don’t know if they will ever figure out everything that is wrong with me, or if I am destined to watch life pass me by.  I JUST DON”T KNOW.  And uncertainty can be a real bitch.  When the rug has been pulled out from under you, you look to family but also to the things you had hoped and planned for in the future.  A light at the end of the tunnel, so to speak.  When you are not even sure what light is waiting for you at the other end, it is real easy to lose your sense of direction.

16. Something I never thought I could do with my illness that I did:  I don’t really have one for AD yet.  But for the endo, I was able to have a child, which I was told might not be possible.  It was a horrible pregnancy, but still worth it.

17. The commercials about my illness: Bwwhahahahahahaha, that is a good one.  I am lucky to find a DOCTOR that has heard about autonomic dysfunction, let alone a commercial about it.  And endometriosis is a women’s disease, so of course it is pretty much ignored.

18. Something I really miss doing since my diagnosis:  Um, everything?  Working, exercising, taking my kid to the park, vacations, shopping, caffeine, alcohol, being able to go out by myself, doing what you want when you want it, housework (yes, even housework), and many more.  Some are permanently off limits, some I can do on good days, but cannot on bad days.  But it forever looms over you; is this going to be a day I can do it, or a day I watch from the sidelines.

19. It was really hard to give up: Control.  I admit I can be a bit of a control freak.  I have always been a take charge, do it yourself type person.  I am not sure I would consider it healthy, but I always kind of had this belief that failure was the result of not trying hard enough.  This is a belief that is very incompatible with having a medical condition like Autonomic Dysfunction.  With Dysautonomia, your body is in control, not you.  It does not matter what you have planned, or how bad you want to participate—If your body says no, the answer is no.  Trying harder, in general, is probably just going to make it worse. You can’t get around it; it’s just the way it is.  You just have to let it go—and this has been very hard for me to accept. I am still working on mastering this.

20. A new hobby I have taken up since my diagnosis is: umm, pinterest?  I have tried to make a few things I found on there, but not sure that really counts as a hobby.  Still need to find a hobby I can do.

21. If I could have one day of feeling normal again I would:  My first inclination was to go hiking in the mountains, as there is a place I really want to visit in Colorado, but likely can’t due to the elevation.  But, in reality, it would be to spend all day playing and being active with my son.  Play soccer with him, ride bikes, run around the playground.  He is so energetic and I wish I could keep up.

22. My illness has taught me: You have to be your own advocate.  If is far too easy to get lost in the system.  It may not make you the ideal patient, but it is better than suffering more than you have too.

23. Want to know a secret? One thing people say that gets under my skin: There is the typical “you don’t look sick?”  Or the “you just need to get out/exercise/eat better etc.”  That is always fun.  Or the accusation that you are faking/exaggerating/have psychological problems.  But, generally, I think it comes down to the awkward way many people treat you they know you have a serious chronic illness.  It tends to fall into certain categories:  treat you like your made of glass, pity, fake concern (usually followed by above advice or their own illness story), or the polite inquiry where a response other than “I’m fine” was not wanted.    This is why, in general, I don’t talk much about my problems.  It changes the way people talk and relate to you.

24. But I love it when people: treat me like normal person who has a few quirks, but don’t make a big deal out of it.  And people who can anticipate what I need without making me ask for help—they are my favorite people in the world.

 25.   My favorite motto, scripture, quote that gets me through the tough time is:  I am open to suggestions on this one.  I guess my current favorite would be It’s Okay to not be Okay as long as you are not giving up. 

26. When someone is diagnosed I’d like to tell them: educate yourself and reach out to other people that have your illness, in person or online.  Also, believe in your gut instincts and don’t let anyone else convince you otherwise.

27. Something that has surprised me about living with an illness is: It can bring out both the best and the worst in people.  It is kind of amazing.  Some people will be so great and so understanding.  And other will be judgmental, inconsiderate, and downright mean.  Having an invisible illness, you get a chance to see people’s true colors when they interact with you.

28. The nicest thing someone did for me when I wasn’t feeling well was:  My family is very good about helping me when I am not well.  My parents give up their day off to come clean my house, my in-laws letting me move in for a few days since there were no doctors for me to see in our home town, hubby taking over kiddo duties.  However, I think the one that meant the most was when my mother took off work and drove down to our town so that she could take my son to the tumbling class we signed him up for but that he was going to have to miss because I was not well enough to take him.  I suffer from profound feelings of guilt that my being sick punishes my son.  The fun stuff he misses because I can’t take him, stuck inside with me because I can’t go outside in the heat, it goes on and on.  It is one thing for an illness to screw up your life, but it is another thing when if messes with your kid’s life.  It makes me incredibly upset when I cause him to miss out, and her coming down so that he did not have to miss out means more to me than I can even explain.

29. I’m involved with invisible illness week because: I would like more understanding for people that suffer from chronic illness, and more awareness that my particular diseases exist.  But I also hope it is somewhat cathartic for me as well.  Chronic illness can be very isolating, especially when you keep what it does to you from the world.  I hope sharing some of it will help me overcome some of the issue I have dealing with and accepting my own limitations.

30. The fact that you read this list makes me feel: Honestly, pretty self-conscious.  I have kept pretty much everything about my illness that I could a secret.  I desperately want to pretend life is like what is was before.  But it is not, and I have to accept that.  And keeping it to myself is not helping anyone, most notably me.  I spend a lot of time feeling like a burden, and a large part of me does not want to burden my loved ones more by letting them know the full extent of what I deal with.   I want to be known as a person before I am known as an illness. I don’t want the first thing people know about me to be that I have limitations.  I don’t want to accept that this is my new reality, and telling people makes it real.  I guess you could say I am still working on the acceptance stage.   I read so many blogs of people with the same illnesses I have, and they seem like they are much more accepting and at peace with it than I am.  It gives me hope that I will eventually reach this level of enlightenment.  But I am JUST NOT THERE.  And I have not seen a whole lot of stuff out there from people who are angry, depressed, lonely and having a hard time accepting their fate.  I think we keep a lot of this to ourselves.  So I guess this is for all of the people out there who are in the same place I am—with their shit completely and totally not together.