Lots of people in the ‘Chronic’ World have probably already seen this meme. I believe it was put out to promote awareness for the National Invisible Illness Awareness Week this past September. You may have seen it on other people’s Facebook pages and blogs.
I have never filled it out, so I thought it may a good thing to put on my blog. 😉
So here it is…….
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. I have congenital heart disease, Severe Fibromyalgia, Severe Myofascial Pain Syndrome, TMJ Disorder, Ligament Instability, 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 TMJD, but the rest of the conditions I have were diagnosed in the last 4 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.
People that do not know me probably assume a lot of different things, but I try not to think about that. I DO know that there is a stereotype of laziness that goes along with many invisible illnesses, but I do not have room in my life to be worried about things like that…. People who love me know the truth, and that is what matters most to me.
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 I am stiff to the point that I am 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 just haven’t been able to get into Trauma… it is a little far-fetched.
8. A gadget I couldn’t live without is:
Another hard question! As with a lot of fibromites, 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 there 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 can be isolating many times, 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 thpink it is fair that BOTH of us are up all night.
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 8 pills and one liquid…. 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:
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.
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 to one day make designing jewelry my full-time career while still being the best mom I can be. That would be a perfect life for me!
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…. but somehow when pain gets involved I think that may get lost in translation somewhere.
Oh and people also might be surprised to know that I am a HUGE fan of most music…. and I ROCK at name that tune!!
15. The hardest thing to accept about my 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 than 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 first…. 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…
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 the last few years, 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 second 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 price I would pay for that would be more than I am willing to. 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….. and that’s is just to name a few… it has re-taught me everything I once knew really.
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….
24. But I love it when people:
I love it when people take 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.
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 support and friendship. 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 thought I could 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…… My parents are ALWAYS just a phone call away to talk me off the ledge…. I have great 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 haven’t yet been involved with Invisible Illness Week, other than reading a lots of posts on their site, but I am REALLY looking forward to being involved in some capacity this year! I would LOVE THAT!!
30. The fact that you read this list makes me feel:
The fact that you read this makes me feel loved! THANKS EVERYONE!!!