Looking to the New Year

With a weary sigh I say that 2016 is nearly at an end, and I cannot stand to speculate what may happen in the coming year, on so many levels; if you follow me on social media at all, it probably has not escaped your notice that I’ve been having some troubles with my usual nemeses: chronic illness, PTSD, anxiety, and depression, all of which are connected and fuel off each other.

At this time of year, goal setting for the next journey around the sun is expected. New Year’s Resolutions abound, and are so often broken before the new January is finished. As evidenced by my post around this time last year, I do it too….but then again, I goal set and add expectations to myself continuously throughout the year, on large and small scales, often reevaluating and adjusting as I go.

This year…I don’t think I’m going to do anymore goal setting than I have, and naturally do, even compulsively. Honestly, how many times can I rewrite, resort, and rework my goals without actually moving forward enough to require it?

After a lot of thought and consideration, not to mention the all too raw and recent passing of Carrie Fisher, and an unexpected dive into #sexabusechat on Twitter regarding self-compassion and self-care, I’m going to try and take a different tact…

But before I go into what I’m going to do, I feel the need to highlight what I currently do. carrie-fisher-im-mentally-ill-quoteIn the light of such a strong and courageous advocate concerning mental health, a woman who pulled no punches and spoke her mind, and the truth, no longer able to continue the fight against stigma, it’s the added motivation to work on how I intend to utilize my own voice in more ways for the purpose.

Due to a combination of my natural personality and tendencies with that of what I’ve experienced regarding trauma …I’m incredibly cruel to myself. I wouldn’t dream of talking to anyone or speaking of anyone the way that I speak to and often about myself. As discussed last night in the chat, survivors of abuse have to learn a new vocabulary because the one they are taught is one of self-punishment and self-loathing. I’m still learning the vocabulary of self-compassion.

There’s something else that is highly unhelpful that I’ve been trying to work on, and that is internalized ableism. For those who are not familiar, internalized ableism can surface in many ways, but it’s essentially the practice of internalizing the ideas, prejudices, and judgments of a society that sees those with disabilities as “other” and unable to “properly” contribute to it; it’s the quickest way to demoralize yourself for something that you have no control over, and I’m incredibly guilty of it.

For me, it’s largely the limitations and issues I have to contend with that come from dealing with any number of things, but not least of which involves my chronic illnesses. I have begrudgingly attempted to make compensations for my physical limitations (most of the time); this can take the form of how often I leave my lair, where I go, what I take with me, who I go with, when I go, what I wear (sun, weather) etc. I do spoon math to decide my activities for the week and individual days and mostly keep within my safe threshold, including being sure to have adequate time to lay down and recuperate when necessary.

The problem is that I have an exceedingly difficult time affording the same consideration for my mental limitations….to clarify, writing is something you can do in a more reclined position, it can be done with some level of accuracy with or without certain necessary medicines in my system, in the comfort of my lair, where I do not have to worry about social energy because I’m often alone; somehow, my mind equates this as something that can be done within my physical limitations that I “should” be able to do nearly continuously, pushing myself to the point of attempting to compensate for the ways I “fall short” (i.e. not able to keep up with social norms of acceptable energy levels and ability to do things).

Fatigue, brain fog, cognitive issues, all are symptoms that I deal with that I always seem to paint over and try to push through…often to my detriment. I become frustrated with my inability to work, I attempt to work, I’m unable to be productive, I get more upset, and it devolves from there. The point is, I don’t allow myself the space I need to accommodate these, and what’s more, I harass myself about not getting enough done….

Ever had a boss that looked over your shoulder (or made you feel like they were), watching your every move, evaluating you constantly, all while yelling at you, insulting you, hounding you about not getting enough done, not doing anything well enough? Yes? No? A little? Well this is me to myself, and it’s hard to get away from me.

You see that I know this about myself, I have for years, and am constantly working on trying to correct these things. It’s not bad to expect a lot out of yourself and push for your best, but it is bad to overwhelm yourself and then get mad about it. At the very least, it’s unproductive, unhelpful, and isn’t the best way to feel good about yourself or what you’re working on.

Which brings me back to things I want to do differently. Rachel Thompson (@RachelintheOC), made two excellent suggestions during the Twitter #sexabusechat last night that I would like to put into action for myself.

First:

goal-advice-sex-abuse-chat-rachel-twitter

Okay, so maybe I will be reworking my goals a little bit to do this, but it’s not the same way I usually do. Just like she points out, it’s about helping focus, which I sorely need, and it will (hopefully) relieve enough pressure to get a steady flow so that the 5 circled goals can change.

And second:

goal advice- sex abuse chat rachel twitter2.jpg

One of the best things about this for me is the normalizing of the need for these shorter increments of time to be enough. Beyond the issues stemming from PTSD related concentration issues and into chronic illness, this suggestion was like a breath of fresh air; I’m still at a place where this felt like permission to try something different, something not within “normal” standards of working time, but it felt good, vindicating.

I have some hope that, if I actually keep with these suggestions, and continue learning the language of self-compassion, I think I might just surprise myself….hopefully even in a good way.

Some people need to learn more empathy and compassion for others, some need to learn to have compassion for themselves; either way, the world could certainly use more of it.

How can you be nicer to yourself and others this coming year? Do you have any (reasonable) goals for yourself?

And always

carrie fisher gif may the force be with you.gif

For World APS Day: Facts and Life with APS

Have you even heard of APS? Yes? No? Maybe? Well, please watch this video to learn a bit more about it, and why it matters.

Some links:

28 Things You May Not Know About My Invisible Illnesses

http://www.apsfa.org/

https://www.nhlbi.nih.gov/health/health-topics/topics/aps

Thank you to any and all that watch this video. I know it’s lengthy and I’m not at my best, so I hope you will forgive me. This is an important issue and I hope perhaps you learned a little something today. Wishing you all the best!

Do you or anyone you know have APS?

world APS day

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.