MANY people in the world of Chronic Illness have seen this meme already. It is designed to promote National Invisible Illness Week. Even though I added this Meme to Graceful Agony when I first started this site, I feel compelled to do it again. As I mature and grow through this journey of Chronic Illness and Chronic Pain I have noticed that some of my ‘answers’ to the following questions have changed…
So here is my updated list!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
I live with a combination of illnesses actually. You could say I was born with an invisible illness, and have struggled my whole life, so I am no stranger to this journey! I have congenital heart disease, severe Fibromyalgia, severe Myofascial Pain Syndrome, Insomnia, TMJ Disorder, Ligament Instability, Si Joint Dysfunction, Unclassified Nerve Pain, Chronic Pelvic Pain, and Endometriosis.
2. I was diagnosed with it in the year:
That would be a hard question to answer….. I was born with my heart problem, I was diagnosed in my early teens with ‘fibrositis syndrome’ which was actually fibromyalgia, but lacked the fancy name in the 80′s as well as TMJ Disorder, but the rest of the conditions have been diagnosed in the last 6 years.
3. But I had symptoms since:
I have had symptoms all my life really, but they became worse after the birth of my son, and unbearable just over 4 years ago when I was going through devastation in my marriage….. some people have a nervous breakdown… I guess I had a physical breakdown.
4. The biggest adjustment I’ve had to make is:
The Biggest adjustment(s) I have had to make is changing my lifestyle and knowing my limitations. Before I was seriously effected by my illnesses, I was a very active young woman. If you had asked people in my life back then a bit about who I am, most would have said I was ‘bubbly’ and ‘sociable’ and ‘energetic’. Sadly, because of my pain, I still feel like I am the same person on the inside, but I am not as sociable or energetic anymore because my pain causes me to ‘hibernate’ a lot.
5. Most people assume:
I don’t know what most people ‘assume’ truly, I’d be only guessing…. I think the people in my life that love and support me don’t assume anything, because they have been through this every step of the way with me, and they know that ‘assuming’ anything is not the way to go…. they communicate with me and wait for me to lead the pack so to speak. In saying that, I also know that I have been misjudged and misunderstood by people in my life, and would go as far as saying that I have been stereotyped and treated unfairly.. those people are no longer in my life. Life is too short to hang on to those who aren’t worth your time.
I am blessed to have parents who are AMAZINGLY supportive, a partner in life who loves ME, and has never seen anything other than who I am, and is proud of me every single day. I also have the world’s best son! My little dude has a really great understanding of this life, and I hope it leads him to have only compassion for people’s differences.
6. The hardest part about mornings are:
The hardest part of the mornings is simply getting up! I am almost ALWAYS in agony when I first wake up in the morning, and not mobile. On really bad days my honey brings me my meds and a coffee in bed, so I can wake up slowly and start moving slowly…. On regular “bad” days, I can get up and get my own meds, and then I try not to move too much until my body warms up a little…. that is ALWAYS followed by some light stretching and a HOT bath, and then I am usually mobile after that.
7. My favorite medical TV show is:
I love ALL medical shows! I wish Dr. House was my long-lost uncle or something …. he would have the “cure” for me in under an hour ER was another of my faves (I have the last season on my iPod), and I love Grey’s Anatomy, Private Practice, Mercy… you name it! I cannot be a Doctor in real life, but I’d love to play one on TV!
8. A gadget I couldn’t live without is:
Another hard question! As with a lot of my online chronic friends, gadgets seem to be my bestest friends, and they make my life a LOT easier! My laptop, my blackberry, my iPod Touch…. and my new Sony Reader! I LOVE THEM ALL! Just ask my honey, because they are USUALLY all brought to bed with me every night! (Yikes, that is not very romantic, is it?)… and I have been known to blog in the bathtub from my iPod…. and yes, I have dropped my smartphone in the bath ONCE…. see.. I told you, they go EVERYWHERE with me!
9. The hardest part about nights are:
The hardest part about nights is PAIN, and what comes with the pain…. feeling alone, 4am baths, sitting on the couch in the dark by myself, or not being able to cuddle because I am too sore….. Pain is often isolating, and that isn’t something that I have gotten used to yet. My honey gets mad when I tell him I have been up all night with pain, and usually asks me why I haven’t woken him up, but I don’t think it is fair that BOTH of us are up all night. I work hard NOT to let depression creep in during those isolating times.
10. Each day I take __ pills & vitamins. (No comments, please)
It varies depending on how much pain I am in, but on a good day I take 5 different medications throughout the day, totaling 15 pills a day…. On bad days the number goes up in relation to how much pain I am in….. I will probably end up on 7 different medications, and god knows how many pills in total that will be.
11. Regarding alternative treatments I:
Regarding alternative treatments, I have pretty much tried everything other than doing the Macarena while standing on my head! I have tried acupuncture, acupressure, craniosacral therapy, massage, chiropractic, holistic, naturopathic…. yep, you name it, I have tried it!
12. If I had to choose between an invisible illness or visible I would choose:
When I first answered this question, this was my answer.. ‘If I had to choose anything, I simply wouldn’t. I would choose a life without illness period. But because that isn’t the case, and we don’t live in Utopia, I will choose exactly what I have… and hopefully the courage to teach others what it is to be like me everyday. Promoting awareness, compassion, and education might hopefully, one day, change the world in which people like me live.’
The gist of my answer still rings true today… I believe there has been a change in the conviction I feel though. Today if I were to choose between having an Invisible or Visible illness, I would choose Invisible hands down… And this is why… For a very long time I thought that the only option I had to be happy was to not have illness of any kind. I was wrong. I have a VERY full and rewarding life… NOT the life I ever thought was possible for me. I have met so many amazing people through Graceful Agony, and I would NEVER want to say goodbye to any of them. They have added so much more to my life than I ever thought possible… so if illness is what has brought us together, then I can accept that. I choose MY life, the way it is..
13. Regarding working and career:
Regarding work and career, my pain, and being the best mom I can be, IS my full-time job. I hope one day that I can make a career our of writing, and being a patient advocate in some capacity.
14. People would be surprised to know:
People would be surprised to know how soft my heart truly is… I have been fearful at times that my illness has made me either less approachable, or more hardened or jaded…. People that have known me for a very long time know that I am a softy….. but people who meet me now… I am not sure how they view me. I cry at the drop of a hat, during commercials, when I listen to music….. I spend a lot of time thinking about OTHER people, and probably not so much time thinking about myself. I always have everyone elses best interests at heart, and that can cause internal battles for me at times. You can say I am a people ‘pleaser’, but not because I have to, it is because I WANT to. That is who I am. Somehow when intense and chronic pain gets involved I think that may get lost in translation somewhere. I think I sometimes come across as being a lot more impatient and cold than I truly am.
15. The hardest thing to accept about my (not-so-new) new reality has been:
I think that answer might change from day-to-day, depending on where I am at with my pain level, and what I am doing. Life has a way of throwing you new curveballs every day…. And if you were to ask me that question 4 years ago, I am sure the answers would have been vastly different from today.
The thing that I often discuss with the ones I love is that THEY have created normalcy around my illness. They have HAD to… so when I say “I’m having a really bad day today”, they aren’t surprised by that. But for myself EVERY bad day I have is like THE VERY FIRST BAD DAY…. I haven’t gotten used to being in agony…. I mean, I am USED to it from the standpoint that it happens all the time…. but it still feels as intrusive and shocking to me as it used to…
The other thing that I haven’t gotten used to is what an all-encompassing impact my illness has on everyone I love. Chronic Pain is a family illness… I don’t ever get used to seeing the helpless look on my Dad’s face, or seeing a tear in my Mom’s eye. It gets NO easier to deal with my sisters discomfort when my pain is brought up in conversation, or when my honey gets angry with my pain… I am still trying to learn how to separate ME from my pain during those times… I feel really bad that my pain hurts others… I am trying to NOT take responsibility for hurting my family.
16. Something I never thought I could do with my illness that I did was:
Something I never thought I could do with my illness has been to have someone love and accept me completely EXACTLY as I am….. baggage at all. When my marriage was coming to an end, I had completely resigned myself to the fact that nobody would love me the way I am, and that I was totally okay with being single or ‘alone’. Out of the BLUE an old friend came back into my life, and it was LOVE AT FIRST SIGHT (or 100th sight really, since we were friends years ago)… We spent MANY MANY hours on the phone talking before we ever met for coffee… I wanted him to know exactly what my life was like….. He didn’t think it was an issue in the least bit! He kept saying things like “you are my hero”, and “Wow, I cannot believe all the things you go through, I have so much respect for you.”. It was a point of view that I was really not ready for…… 19 months later he has been with me through thick and thin. He is truly my best friend, and we have a love that has risen above everything that has been thrown our way. I want nothing more to spend every day of my life with him….. and I am surprised that I have been so blessed.
17. The commercials about my illness:
What commercial there are about my illness, do not depict ANY of the illness accurately! They drive me crazy! Take a pill, and in 30 neat seconds that look more like a musical montage than real life, POOF! You are happy and jogging down a sandy beach with your golden retriever…… crap, can I have a pill like that?!?!?
18. Something I really miss doing since I was diagnosed is:
I miss the little things….. having the energy to get up and go, watching my son’s Christmas concert without having to worry about how hard the seats are, how long I will be sitting for, what price I will pay the following day……. It isn’t BIG things like ‘Oh I wish I could go skydiving still!” or “I really miss alpine skiing!”…. I really miss just NOT having to be aware….. I am hyper-alert every minute of every day, and it is TIRING! The first thing I think about in the morning when my eyes open is what I have to do just to get through the day…. I always have to be 10 steps ahead of the game….. if I have a coffee date at 5pm, I have to modify everything I do so I know that I will be mobile and functional by the time 5 rolls around….. I miss NOT having to think in those terms…. I miss not having to think of my pain every second of every day whether my pain is bad that day or not…. I always have to be 5-10 steps ahead…… it prevents me from living in the moment at times.
19. It was really hard to have to give up:
In a word, FREEDOM…. Physical, Mental, Emotional etc….. There are a million things I have given up, but they always end up being about one word…… freedom.
20. A new hobby I have taken up since my diagnosis is:
I don’t know if I have taken up any new hobbies….. I have always loved to read, and know I read just as much, but maybe I read about different things…. But other than that, all my hobbies are pretty much the same – making jewelry, knitting, crocheting, reading, spending time with family etc.
21. If I could have one day of feeling normal again I would:
If I could have one day of feeling normal again, I don’t think I would do it. If it was only ONE day, and the following day I would go back to feeling this way, I think the EMOTIONAL price I would pay for that would be more than I am willing to pay. DOES THAT SOUND CRAZY? I am now at a place in my life that I have no muscle memory or recollection of what it was like NOT to have pain…. I honestly don’t remember now… and I think if I had one day to feel that way, I would have to deal with all the depression and emotion of accepting a life with pain all over again….. I hope that makes sense.
22. My illness has taught me:
Where to start with that one?!?……. My illness has taught me a million things! Mainly though, it has taught me how strong of a woman I am, how much I am loved, how the human spirit can bend and break, but it becomes stronger at the broken places…. It has taught me what strength, and courage, and perseverance truly mean…..
It has also taught me that there is strength is numbers. There is a united front in our online community – and the people who you may expect anything from the LEAST might just be angels that have been purposely put in your path… Thank you my earthly angels who are reading this… I hope you know that my words mean nothing without you on the other end – reading them, loving me, and encouraging me.
23. Want to know a secret? One thing people say that gets under my skin is:
One thing people say that gets under my skin is “It could be worse!”….. um that is very easy to say when you are not the one having to live this life everyday…. That is a huge slap in the face.
24. But I love it when people:
I love it when people take the time to talk to me about what I go through, and really listen. I love it when I connect with people…. I love it when people take the time to give me encouragement, listen to me cry, put up with my rants, and don’t judge me. Some of the most powerful words to hear are “I am so sorry you are going through this” and “I love you”.
25. My favorite motto, scripture, quote that gets me through tough times is:
My favorite thing that gets me through tough times is just to count my blessings…. it always looks much darker when you don’t stop and reflect on how many wonderful things you have in life, and how much gratitude can come out of a little bit of reflection.
26. When someone is diagnosed I’d like to tell them:
When someone is diagnosed I’d like to tell them that even though our experiences and or symptoms might differ, I am always here for YOU! I hope to have the opportunity to share my experiences, my friendship, and to encourage you to have hope. YOU are NOT alone!
27. Something that has surprised me about living with an illness is:
Something that has surprised me about living with an illness is that it has made me tolerant of things that I normally would have not been, and it has proven to me that I am stronger than I EVER thought I could be. My will, courage and fortitude has ended up being something very different from what it used to be.
28. The nicest thing someone did for me when I wasn’t feeling well was:
I don’t know that I can answer this question with one answer….. There are so many nice things that people do for me when I am not feeling well! My honey is the greatest (okay okay, I am sure that you are probably getting sick of hearing that already ), and he is FULL of wonderful things that he does day-to-day… from bringing me my medication, rubbing my back, reminding me of my strength when I forget… holding me as I sob, and not judging me…… My parents are ALWAYS just a phone call away to talk me off the ledge when I have had enough, they love me unconditionally, and the power their love has brings me to tears. I have some AMAZING online friends who are ALWAYS there to listen to me…… The thing that makes the most difference when I am not feeling well is to simply just have someone ‘there’ and to know that I am not alone.
29. I’m involved with Invisible Illness Week because:
I am involved because THIS is who I am. I AM Graceful Agony… and I do this for others who walk this road as well.
30. The fact that you read this list makes me feel:
The fact that you read this makes me feel loved! THANKS EVERYONE!!!
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