Last Thursday, we had the best ARGUMENT SESSIONS workshop yet - it flowed and it was fun. The commute was rough on my feet and knees, but I felt like my body did pretty well compared to the last one. Then on Friday, we did the Pilates demo for the EDS-NYC Group and I pushed too far (I wanted to make my instructor look as good as she is, but she talked a lot while I had to hold positions that I don't usually hold. I should have spoken up, but didn't. My fault.)


So I had a couple of days where I was really terribly sore and stiff. Not normal sore and stiff, but EDS sore and stiff. It took me quite a while to recover.


A Fine Balance by Bev  

Today, I had PT and then Rick and I went out on the tandem bike to pick up some things we needed. It was hot and humid again, and I felt kind of sick toward the end, but recovered pretty quickly when we got home. Last time, it took me over an hour to recover from being out and about in the heat.

The thing is that I never know! When I'm asked if I will be able to do something or other on a certain day, I have no answer besides "I'll have to wait and see". And I know how frustrating this must be for everybody.

Christine Miserandino, who has lupus, writes a blog called "But You Don't Look Sick". She has written a post explaining what she calls "The Spoon Theory", which has become an oft-quoted article in disabilityland. In a nutshell, her friend asked her what is was like to have lupus. Christine handed her a bunch of spoons from the diner tables to represent how much energy she could have to do things - ANYthing - on any given day. 

To quote Christine: "Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control."

The article is very enlightening and you should read it. But what it boils down to is that every day I have to choose, not just what to spend my energy on, but what to spend my pain on. Low-level constant pain is there all the time. I decide how much to medicate (how much my stomach can stand, in the case of NSAIDS, how awake/aware I have to be in the case of opiates) and when - because I often don't. (My rheumatologist wishes I would medicate more, but opiates make me nervous.) And then I decide what I think I can do without adding too much pain or discomfort (like nausea). And then if there are things I want to do that aggravate me a lot, I decide if it is worth it to do it anyway.

Any show I'm invited to, any dinner or drinks invitation, an offer of some giveaway clothes if I can just come get them - these all have to be weighed.

And I always want to say "YES"!

And sometimes I do. When I shouldn't. And I physically regret it later. Because I have to take care of myself.

So I'm still learning what I can and cannot do. And I hope y'all won't let that stop you from asking me to do stuff with you. I may say "no..." most of the time, but I miss you. And I want to say "YES!"

And if I say "YES!'"and later realize OOPS! it should've been a "no...", I may physically regret it later.

But emotionally, I'll be soooooooo happy I saw you - it'll be worth it!

      Invisible Girl by Jason Garrattley 
Invisible Illness Week starts on September 9, 2013.

To raise awareness of invisible illnesses everywhere, chronically ill bloggers are completing this meme designed by Lisa Copen founder of Rest Ministries and National Invisible Chronic Illness Awareness Week: 30 things you may not know about their invisible illness.

So, it's a tad early, but here are mine:

1. The illness I live with is: Ehlers-Danlos Syndrome - Hypermobility Type (formerly known as Type III or Benign Joint Hypermobility Syndrome - they no longer call it that because it's become obvious that it is not benign!) I also have a lot of stuff that comes with it, like fibromyalgia, POTS (Postural orthostatic tachycardia syndrome), chronic pain, degenerative joint disease, low blood pressure, what they have always thought is anxiety but research is showing is actually a body swimming in adrenaline most of the time, gastro issues, and PCOS to go with it.      Invisible Girl by Jason Garrattley 

2. I was diagnosed with it in the year: (PCOS in 1990) HEDS last year in April. Finally.

3. But I had symptoms since: Childhood

4. The biggest adjustment I’ve had to make is: understanding that pain is always there, but figuring out what is "normal" pain and what can be leading to further injury. I've always had pain, my whole life, and just assumed that everyone else did too! How would I know otherwise?

5. Most people assume: that I'm okay most of the time and just have pain sometimes. Nope. But my body is used to the pain chemicals, so I don't notice them as much until I add to them by moving "wrong". I have to make decisions every day about how much pain I'm willing to take on and what is worth it. Pilates is worth it. Riding the tandem bike is worth it. Doing almost anything at all related to theatre for a limited number of hours is worth it. Drinks or coffee for a couple of hours with friends is sooooo worth it! Seeing shows or movies is borderline - it's pretty hard on me, so I have to pick and choose...

6. The hardest part about mornings are: my mornings have gotten better, actually, with therapy and meds. But I have to be sure my feet are not out of alignment before I get up, and I usually have to grab the dresser and guide with my hands on walls for balance for several minutes after I rise.

7. My favorite medical TV show is: Royal Pains, but mostly cos I'm looking for actors I know :) They did an episode that had EDS in it (before I had ever heard of it), but didn't treat it as as complicated and sometimes dangerous a condition as it is. I really want to re-watch that episode now!

8. A gadget I couldn’t live without is: my iPhone. It makes me feel connected, with Facebook and interactive games. I can sit on the couch in one of the positions that is pretty comfortable for me and still be doing stuff. And I can do a lot of the games because the phone's surface is small enough that I don't activate my wrist too much - I couldn't do that on an iPad.

9. The hardest part about nights are: lack of restorative sleep -because of spasms, usually, but sometimes anxiety caused by adrenaline surges, sometimes pain from overworked muscles or subluxations, sometimes what just seems like generic insomnia. I often sleep sitting up with my legs outstretched and leaning over a pillow - unfortunately, that strains my neck eventually. But often it's the only way to get the leg spasms to ease up for a while.

10. Each day I take 5-7 pills & vitamins: Vitamins C & D (for bones and collagen), magnesium pills, magnesium lotion (we need magnesium but don't absorb it easily), collagen supplements (they probably don't help, but I'm trying all sorts of things), Glucophage (for PCOS), then either prescription strength Ibuprofen or Hydrocodone or Tramadol for pain based on degree (some days none, just because I don't want to always take pills), I also have anxiety meds, but I'm hoping to switch to something that just blocks adrenaline. And I have muscle relaxers in my med cabinet but I avoid them - they make me so loose that my body freaks out and actually tries to tense up to hold me together. I also wear 3 braces layered on my right wrist and foot/ankle braces whenever I leave the house to hold my feet together.

11. Regarding alternative treatments I: use Pilates, physical therapy and massage therapy both concentrating on myofascial trigger release (if I have a normal massage, my body seizes to try to hold itself together and I spasm all night). I'd do dry needling if the state of New York allowed PTs to do it. And my mom is always finding stuff for me like a hand exerciser, an accupressure mat, LED light therapy - we're always on the lookout for anything that might help!

12. If I had to choose between an invisible illness or visible I would choose: I don't know. I know people with visible disabilities hate being stared at. But I get stared at and judged as I ask people to move their bags so I can sit in the subway because I don't look like I need help. I feel judged as fat and lazy a lot, tho I'm sure part of it is in my imagination. Sometimes I think if I had a cane or gave in and got a wheelchair I'd be treated with more care. But canes are useless to me and I want to be as normal as possible for as long as possible, so I only use wheelchairs at airports.

13. Regarding working and career: This devastates me. I loved my career. But I hurt too much to do 8 shows a week anymore. Just the commute would be so rough on me. I love doing readings and workshops - they hurt, but rehearsals and performances are limited, so it's worth it to push through it. I can't even offer my services to charity - I can't type much or use the mouse without pain, I can't serve food with my hands, I can't walk door to door, I can't make calls for more than about 30 minutes before my back and shoulders start to scream, not to mention my hands. Maybe as they figure out more about this condition, I'll be able to find a way to work again...

14. People would be surprised to know: how exhausting this whole thing is (see 8/14/13 blog entry "Hypervigilance (or So THAT's Why I'm So Tired!)"

15. The hardest thing to accept about my new reality has been: how limited my life has become. How much goes into figuring out every single day what I am capable of doing. And how, when I do some things that just HAVE to get done, I will pay the price in pain for 2 days after.

16. Something I never thought I could do with my illness that I did was: that's too soon to know - I'm still experimenting and finding my limits. I'm really really glad that I did most of the things I wanted to do while I was still able to pursue them!

17. The commercials about my illness: there are zippedy-doo-dah commercials about my condition. The majority of doctors haven't even heard of it, or vaguely remember it from 1 half-hour class on connective tissue in med school. They say it's rare, but we think it's just seriously under-diagnosed.

18. Something I really miss doing since I was diagnosed is: the diagnosis itself has not limited me - in a way it's opened my life up because now I know where the pain comes from. The things I no longer do, I gradually stopped doing a few years ago because of pain.

19. It was really hard to have to give up: my career in the Arts. But I refuse to give it up totally.

20. A new hobby I have taken up since my diagnosis is: this blog, because I got tired of hiding what was happening to me and I wanted to get a little more awareness for my condition. I have been greatly gratified that the other EDS sufferers from our support message boards have occasionally come to read my blog and said that I was able to put into words things that they could not. I glowed for 2 says when I heard that!

21. If I could have one day of feeling normal again I would: get myself back on a damn stage! (Really, what else did you expect me to say?)

22. My illness has taught me: to set priorities. I cannot function without setting daily - sometimes hourly - priorities.

23. Want to know a secret? One thing people say that gets under my skin is: "Yeah, I [couldn't sleep/my feet hurt/hate the humidity], too". I know it's sharing, but it makes me feel like my pain is being downgraded and completely misunderstood (BTW, the thing about humidity is I lose all my water, salt, magnesium and potassium from my body just like you do, but I have absorption problems and will be nauseated for hours while I try to get my levels back up. And my feet hurt because the joints are all pulling apart from each other as I walk or stand.)

24. But I love it when people: ask me if I have everything I need or if I need to stop for a while. Not falling all over me, just checking in on me. Because in my quest to appear normal, I'll often push myself too far. Asking me "how's it going right now" gives me the opportunity to ask for something I might really need without interrupting what's going on with everyone else and feeling like a bother. (Thanks, Ilana!)

25. My favorite motto, scripture, quote that gets me through tough times is: it's a meme that's attributed to Buddha, but it's not actually his: "In the end, only three things matter: how much you loved, how gently you lived, and how gracefully you let go of things not meant for you."

26. When someone is diagnosed I’d like to tell them: we all react differently to this, so educate yourself but don't believe the horror stories will necessarily apply to you. And stay as gently active as you can - the more you can strengthen your muscles so they can do some of the work that your faulty tendons and ligaments cannot, the more you will be able to enjoy your life.

27. Something that has surprised me about living with an illness is: that the people I'm most afraid of being a "load" to don't actually seem to consider me a load. This is particularly amazing when I read about all the divorces on the support message boards and when I see the statistic that the divorce rate among couples where one partner becomes disabled is over 75%.

28. The nicest thing someone did for me when I wasn’t feeling well was: give me my space. I'm like a cat when I don't feel well and I want to be left alone. That's hard on my boyfriend who wants to spend lots of time with me. So having him give me my space and just occasionally checking in on me was a real gift.

29. I’m involved with Invisible Illness Week because: this whole thing is important to me. I wrote to the mayor's office suggesting bracelets for invisibly disabled people so we could more easily ask for a seat on a bus or subway instead of standing in pain. They called and said they'd call again if they ever decided to follow up on the idea. Pfffftt! I'll try again if Bill DeBlasio gets elected!

30. The fact that you read this list makes me feel: really happy that you bothered to, and wondering how on earth you had the time for this much rambling! lol!

I have had only 1 night in the past 7 where I've gotten more than a couple of hours sleep. My legs are seizing with tiny spasms all over. It's been terribly humid - we went out on the bike for a short ride and I got nauseated from dehydration even while drinking my Gatorade and it took me about an hour to recover with salt and NUUN tablets in water. The AC is on in the bedroom, but my boyfriend is snoring and the apartment across the way has left their tv on again flashing lights into the bedroom so I've moved to the dining room to try to sleep on the sofa. A small bone has shifted out of joint in my foot and has been bothering me since I was making dinner. It hurts when I walk and I can't seem to figure out how to shift it back in. 

I'm tired half to craziness, I hurt, I'm too warm, I'm uncomfortable. I've taken a Tramadol and rubbed magnesium cream on the backs of my legs. And now I'm overwhelmed and crying on the couch. 

There is nothing amusing about this post - I don't have it in me right now. It doesn't usually all catch up to me like this, but it did tonight. I just needed to tell someone.

I'll try to be amusing again next time.


*UPDATE: 2 nights go I took a Hydrocodon pill and mostly slept (weird dreams, tho - that's the way I am with most opioids). Yesterday, I noticed the spasms starting again in the evening and thought "Nonononononononono...!", and took my new time-release magnesium pill with 1/2 a Tramadol. And I mostly slept again! I am greatly relieved by this, as I want to avoid as many opiate doses as possible...