28 Things You May Not Know About My Invisible Illness

If you follow me on social media or know me in some capacity, you may have heard me mention chronic invisible illness and pain. This year marks a decade since my first real hospital visit (aside from appendicitis in 6th grade) and subsequent first diagnosis of my first autoimmune disease. That’s right, I hit the jackpot and have more than one.

A chronic illness, for those unfamiliar with the term, is a disease or disorder that may develop slowly, but is prolonged in duration, often lasting the remainder of the individual’s lifetime; they are rarely cured completely and usually involve a life of attempting to maintain a livable baseline through various treatments.

As for an invisible illness, it’s a little something like this:

invisible illness

One day I stumbled upon this post, which the author posted in support of Invisible Illness Awareness week where she answered 30 things you may not know about her invisible illness. It was a succinct and enlightening overview of what living with Lyme disease has been like for her. Having been unsure how to convey some part of my own experiences living with chronic invisible illnesses, I thought it might be a decent approach to use myself. There’s not a lot of detail, but it hits some highlights. The original poster of the questions is none other than Christin Miserandino , the founder of ButYouDontLookSick.com and the use of Spoon Theory to describe living with chronic invisible illness (you may have heard me mention spoons before.)

Both Invisible and Chronic Illness Awareness Weeks are in September, but since both Lupus and Fibromyalgia Awareness are in May, and APS Awareness is in June, now is as good a time as any to share.

Here are 28 things you may not know about my chronic invisible illnesses.

  1. The illness I live with is: I have Lupus (SLE), APS (antiphospholipid antibody syndrome) with a history of blood clots including a pulmonary embolism and 6 TIA’s, I also have Fibromyalgia, and often deal with migraines, arthritis, a history of SVT, and the symptoms and issues those bring with them.
  1. I was diagnosed with it in the year: 2006 was when we found I had APS and an autoimmune disease considered most likely Lupus; this was after a pulmonary embolism was luckily caught and a ton of tests were done, I was 17. I was officially diagnosed with Lupus in 2008, and in my early 20’s I was diagnosed with Fibromyalgia and arthritis
  1. I have had symptoms since: at least 16 years old, though my mother believes I’ve shown some most of my life
  1. The biggest adjustment I’ve had to make is: I’m still learning to live with my limitations. After 10 years I’m still not used to the fact that one morning I can get up and run errands or do some work or activity outside of my home for a few hours, and others I can barely get out of bed and move to my chair or couch due to pain, migraine, or fatigue. Either that or adjusting to taking medicine…I’ve had to start taking more medicine than I ever wanted. I’ve always hated taking pills, but now I have to, because at least they’re better than the hospital or another stroke or something worse, or shots every 12 hours (and these aren’t insulin needles).
  1. Most people assume: Far too many things….that if you know one person with chronic-illness-ecard-6Lupus/APS/Fibro, you’ve heard all there is to know, that if you don’t look like a specific individual’s idea of sick then you must not be; a lot of this goes along with age, too. There’s a prevailing, possibly subconscious, idea that if you’re a certain age, you have the ability to move past or somehow grow out of whatever malady is slowing things down and making things difficult for you, which couldn’t be farther from the truth.
  1. The hardest part about mornings are: Never knowing what I’m going to wake up to, or when. Every day is a dice roll, and sometimes it’s by the hour.
  1. My favorite guilty pleasure is: Probably eating French fries. It’s about the only fried anything I really eat anymore besides the occasional cheese stick. In the arduous attempt to eat better for myself, potatoes don’t factor in as much as I currently succumb to the desire.
  1. A gadget I couldn’t live without is: I really don’t know. Hard for me to think of anything I use as a gadget in this way. I guess heating pads in general, the microwave ones are nice. Maybe my Brita water filter, since I don’t have to worry about buying or carrying water anymore, or pressure pointer for knots in my back…
  1. The hardest part about nights are: Getting to sleep, staying asleep, finding a comfortable position to sleep in…it’s also more difficult to reach someone (and I feel far more guilty about asking for help) if there’s a new, strange, or unnerving problem and I am not sure what I should do, or feel that someone else should be aware.
  1. Each day I take: Anywhere between 2 and 10 pills. My Coumadin dose fluctuates, and many medicines are for as needed, such as medicine for my migraines, or a muscle relaxer for my back, etc. I need to get better about taking vitamins, like vitamin D especially since I have a deficiency (being allergic to the sun and all, because I’m a vampire). Multivitamins are too big.
  1. Regarding alternative treatments I: I prefer alternative treatments to most any other. Though, I believe it’s all a matter of finding what works for you and your specific needs. I have had acupuncture before, for instance, and it seriously helped me at the time. Then again, it would work better if I used some of them more, such as soaking in a bath for 10-15 minutes every day or so to help arthritis.
  1. Regarding working and career: I had hopes of getting through enough school to be a counselor of some kind, meaning I would need at least a Master’s Degree. It took me 9 years to earn my Bachelor’s degree, and if you only knew the half of what it took to get there…Needless to say, I’ve had a lot of issues with jobs. At the moment, I’m doing all I can to make this writing thing happen because I can do it at home, or hospital, or elsewhere. I can work at my own pace and in as much comfort as I can find. It doesn’t hurt that I’ve always had a love for books and writing, or having written as Dorothy Parker aptly describes. So here I am, trying to carve out whatever path I can.
  1. People would be surprised to know: How clueless some doctors are and how often you’re prescribed a drug for reasons other than what is best suited for you (some doctors tend to go with companies they get kickbacks or other fringe benefits from. Ever seen a suited person carrying drinks or bags, or rolling a cooler into a doctor’s office? free lunch.) Also, how upset some doctors get because you came prepared with questions and information that they didn’t hand to you and that conflicts or contradicts them and they weren’t expecting, or if you seem to know more about something than they do. You can say no to your doctor, you can ask questions, refuse or attempt to request tests.
  1. The hardest thing to accept about my new reality has been: All of the things I felt I should have been capable of doing and accomplishing, dealing with limitations and outcomes.  For the most part I have accepted it, but sometimes I get sucker punched by it. Internalized ableism is a HUGE problem for me, as is dealing with society’s inherent ableism.
  1. Something I never thought I could do with my illness that I did was: I am able to horseback ride, though it’s at great cost. I’ve only been once in a very long time.
  1. The commercials about my illness: I have no idea, I don’t have cable so I have no idea what might be said in one, if there even is a commercial for some of them, like APS.
  1. Something I really miss doing since I was diagnosed is: Not having to worry about my energy, not just that day but the surrounding days.
  1. It was really hard to have to give up: My independence, having to need other people and ask for help. I prefer to do things on my own, so the fact that since my early 20’s I’ve needed help with taking the trash out, or needing help being taken to (or deciding to go to) a hospital…so many things you don’t even realize are related to that feeling of independence. I won’t lie, it can be a bitter pill at times.
  1. A new hobby I have taken up since my diagnosis is: I’ve taken up and shifted from hobby to hobby. I taught myself to knit and crochet after my TIA’s, in large part to help the grip and dexterity of my left hand. I’ve taught myself to make different kinds of jewelry as well, but my hands don’t always cooperate.
  1. If I could have one day of feeling normal again I would: I don’t like questions like this, but I guess I would probably go horseback riding, maybe dancing, give my niece the piggyback ride of her life, maybe I’d rearrange or clean a room then cook something and clean the dishes that same day, because I could.
  1. My illness has taught me: It’s still teaching me to be kinder to myself. I’m still learning. I become frustrated with the things I’m not able to do (or able to do quickly enough for my tastes) and all that comes from those limitations, so sometimes I push myself too far. I am a person that relishes the small things in life, but I rarely seem to appreciate the things that I accomplish, whatever scale they’re on. I have been using words like “at least” to describe what I’ve accomplished in a day instead of saying “I have”, “I did”, and letting myself be proud of that. I haven’t yet learned to set my expectations to suit my limitations. Maybe I never will, because it feels like letting the illness run my life. Still, I’m making some progress in giving myself a break.
  1. Want to know a secret?  There’s more money in treating than in curing, more focus on profit when it comes to healthcare, and that’s a huge problem.
  1. But I love it when people: I love when someone does research and then asks me questions. Often it’s hard for people to differentiate between symptoms or events that happen with some, most, all, or just my personal experience. I don’t always have the energy to go into it all, but I prefer people to ask questions than to continue with an assumption. Someone having done some research before asking me a question, though, means not only is it likely to be a more specific and thoughtful question, but I don’t have to use up time and energy to give a basic lesson first before answering the question.
  1. My favorite motto, scripture, quote that gets me through tough times is: I don’t have one. When things are really bad, there’s no one motto, quote, or anything else that is going to get me through. Most things sound like cliché platitudes when things are so tough I’ve reached occasional cynicism. What I tell myself changes, but the basic idea is the same: keep going, focus on changing what I can, take care of myself including breaks when I don’t feel I deserve them. Rest, refocus, keep kicking back.
  1. When someone is diagnosed I’d like to tell them: Do the research, don’t just accept what every doctor tells you as law or the end all. For the illnesses I have, a lot is uncertain and more research needs to be done. If I had a dollar for every time I’ve had to explain to a doctor was APS is, I might be able to pay one of the hospital bills…But anyway. I would also tell them that they know their body better than anyone else ever will, including a doctor, and not to let a doctor pressure them into something that doesn’t make sense or feel right to you. Being scared is okay, but you need to learn to work through that and make the best decisions you can for you. Be sure to ask questions.
  1. Something that has surprised me about living with an illness is: The ignorance and prevalence of prejudice when it comes to having, not only an invisible illness, but But-you-dont-look-sickone from a difficult age. When you’re 18 and look younger, able to stand and presumably walk without assistance, and have no visual deformity, you don’t fit what disabled is “supposed” to look like to most people. Judges, strangers, even sometimes friends or family don’t understand because you don’t look sick to them. Sometimes they knew you before, what you were able to do, and don’t understand why you look the same but can’t do the same things. Not everyone is understanding. Seriously, ableism is everywhere.
  1. The nicest thing someone did for me when I wasn’t feeling well was: Any number of things big and small….there isn’t one ultimate act because each one of them is felt and appreciated by me. My mother has come over to clean my apartment, carried bags, run errands. I’ve had help with taking the trash out, with cooking, dish cleaning. I had people be understanding and forgiving of missed events or canceled plans. I could go on, but I couldn’t say one act was the nicest because in the moment, each is huge.
  2. The fact that you read this list makes me feel: Grateful, hopeful, and curious.

Do you or someone you know live with a chronic or invisible illness? Please feel free to fill out and share your own answers to some of these.

 

A Special Word of the Day : Amalgamology

First blog post of the New Year and well on the way to my first full year of blogging…I can hardly believe it. So much happened the last half of 2015, and I’ve managed to find myself in an excellent launching place for the start of 2016; a lot is going to happen this year.

But first! For those that have been following and perhaps wondered, or those new and curious, a special word of the day: Amalgamology. What is it besides the name of my blog? Well, first, it’s not technically a word (as in not in the dictionary)…yet (that’s right, I’m channeling Shakespeare  and Dr. Seuss here). I fused two words together, as many words are. First there’s amalgam, which is a mixture or blend, and then ology, or simply, the study of a subject or branch of knowledge. So what does it mean? Here’s my definition:

amalgamology
Amalgamoology: the study of a mix of blend of thoughts and ideas

 

The easiest way I can explain why I call my blog this is because…I don’t do the whole niche thing. There are many fantastically talented writers that have one area their platform is known for or raised on, or one topic in particular they focus on.

I completely understand the benefits involved with having a niche and working within that scope, a lot of things become a lot easier for marketing, finding your audience, much more. However, if I tried to pin myself down to only one aspect of….almost anything, I think I might combust.

giphy
The same thing happens when asked about my favorite book…singular

My interests are many and varied. Another way to say it is that I’m eclectic. I have a handful of useful “go-to” answers to the question of my interests, but if I were to give my full list, it would overwhelm anyone, including me.  In fact I will, most begrudgingly, admit that I probably will not have enough time to delve as deeply into everything that I want to in this lifetime…there are just so many amazing thing to read, learn, see, do!

Admittedly, a good chunk of what you will find on here is writing or literary related, but why choose when you don’t have to? I understand what is typical, but this is me forging my own path and I don’t think I should start changing that about myself now…I’ll save you any possible suspense, but me choosing one focus, topic, interest, otherwise, is not likely in the cards. I’m okay with that, I hope you are too! Who doesn’t like to shake things up occasionally? Believe me, there will still be plenty of writing related goodness (have I mentioned I’ve got plans?) 😉

If you’re curious about what topics might be on the horizon, or just in general where some of my interests in and out of writing and books lie, then here you go:

Writing– competitions, tips, useful resources, updates on my own, sharing of others’, etc. the list could go on. (stay tuned for an influx of fiction to be shared as well..plans, you know?)

Languages– this could come in many forms, I love languages and wish I spoke others as fluently as English. I know some German, a little French, bits of Russian, Italian, Spanish, Latin, ….the list I want to know encompasses and goes beyond these….(I said  a lot right?)

Awareness/Causes– many issues that could use attention including mental illness, abuse in all its many forms, Lupus and a few other medical issues close to my heart, etc., posts to raise awareness, combat stereotypes, offer help, and more are likely candidates.

Art– paintings, drawings, sculptures, mixed media, photography, artists I know, artists I’ve newly found, and more! Any way that I can slide some art in, you can bet I will.

Travel– it’s a big world out there, so much to see and experience, so much to learn! Places I want to go, sharing interesting tidbits from research, either for my books, or my own inte-…okay same thing, my interests, varied as they are.

Books– anything to do with books, reviews, suggestions, etc. also this and travel may overlap in the area of libraries, but you can definitely expect books.

Crafting– this could involve sewing, knitting, jewelry, clay, stuffed animals…anything that comes to mind when I’m in a crafty mood.

Anything!

Really, I could probably be here all day but you get the picture: I have lots of interests, and I couldn’t choose just one or even two to focus on. If I end up doing so naturally, that’s perfectly fine, but I won’t purposely restrict myself to a few topics to suite a niche. That feels too limiting.

Thus, Amalgamology is the name of my blog (if you were curious). Does your blog have a specific name, word, or phrase for a reason? Please share what you named your blog and why in the comments.

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