On coping psychologically and understanding your ellipses...

I've been thinking a lot lately about the incremental changes I've made to my life since my decline began a couple of years ago. After having been severely affected by my EDS during my teen years, then emerging into adulthood with my symptoms subsiding, age has caused a second wave of EDS to come creeping my way. As an undiagnosed teen, I was scared by how my body seemed to break down and buckle at every turn, but as an adult with a matured sense of self I can tackle this new wave with a renewed perspective.

I have a HEDS/CEDS combo, and I was diagnosed in January this year after over a decade and a half searching for answers. I feel I still have youth on my side at 27, but in the last year or so I've had to really knuckle down and make some hard decisions and big changes to my lifestyle. At the time, every decision has felt like submission to EDS, but as I go along I've been making peace with those choices. 

I feel my EDS is mild in presentation, with daily subluxes, and dislocations only a few times a week. I don't rely on pain medication, not because I don't live with pain, but because I used a lot of pain meds as a teenager purely to get myself out of bed. These days I have somewhat of a psychological aversion to them. Codeine is my fallback, but to be honest I take them on really bad days once every few weeks, max. I have a huge (and growing) collection of braces and supports that I can reach for when my joints need some help, and I use those daily on an as-needed basis. Often I forget that I don't have boundless energy, and flop into a spoonless coma-like state to recharge. One day burning through spoons can equate to days spent lolling around uselessly, so pacing is definitely a skill I'm still seeking to perfect (for more on spoons, see my previous post!)

I definitely count myself as fortunate. I know what it's like to be bed bound for weeks, months, years. I know what waking up breathless in the middle of the night because my diaphragm collapsed is like. And I count my blessings every day that with a few measures, I can live my life in relative normality.

For me, dealing with EDS is as much about finding tricks and aids that help me get by on a physical plane as it is about coping on a psychological plane. One of the weird facets of my EDS blindsiding me at the age of 12 was that I knew I had to grow up exponentially quicker than my peers. It was a very conscious realisation, and it helped me understand what I was going through. A child shouldn't have to be so acutely conscious of their own childhood in that way, but I knew that what I was facing was going to require maturity far beyond my years. In this way, since the day I understood that, I've been very self aware of personal growth, and how important that is in dealing with EDS. EDS isn't something that happened to me, it IS me, but it does not define me. That's where I'm at now.

I still go camping... though a trip to the chiropractor is always required straight after. I still go on hikes... but I wear the most supportive boots and stop often, even when it's only a mile. I can still cook and clean for myself... I just need to save up some spoons first, and know that I might be useless for the rest of the day afterwards. I am a full time student that takes on extra work... and often that means foregoing a trip to the pub after class with my classmates.

Surviving and thriving with EDS is all about those ellipses. More than that, it's about embracing those ellipses. What comes after the ellipses isn't indicative of failure, it's just adaptation. Other's might not have the same ellipsis, or they might not have an ellipsis at all, but that doesn't matter. So what if yours might read "I can make it to the top of the mountain... in a wheelchair", or "I keep my house clean... with the help of a professional cleaner". We EDSers have to be many things (strong, feisty, compassionate, resilient), but most of all we have to be adaptable. I think coming to this understanding is the most valuable part of my arsenal yet.

On spoon theory

As I sit here, I'm exhausted. My body feels weak, my mind can't focus, and I'm struggling to form full sentences. In fact, it took three goes just now to type 'sentence' properly. My eyes are drooping, and right now, any horizontal surface looks great for sleeping. The best part? It's only 10:00.... in the morning.

A post on exhaustion and all the things that entails is just about all I can think about doing. I struggled to eat half my breakfast, I'm dreading summoning the energy to have a shower, and I haven't even got dressed today. Tea is going down pretty well, but caffeine doesn't even scratch the surface of this particular strain of tiredness.

In the EDS world, you'll hear a lot of talk about the 'three Ps': Pacing, Pain Management, and Physiotherapy. I'll be writing a post soon about the importance of all three, but my exhaustion this morning is directly related to neglecting the first 'P'.

I'm awful at pacing. Completely, utterly useless. It has a lot to do with my belief that I'm somehow invincible (which I'm not) or superhuman (which I'm also not).

I'm still young – 26 – and I have a habit of erroneously equating that age with energy and vitality. It's no wonder I do that, though, because when the rest of the world makes that assumption about you, you can't help but have that assumption rub off on you. Why can't I go out and drink with friends? Why shouldn't I make that 2 hour round trip on my Sunday off?

I'll tell you why: Spoon theory.

If you've not heard of spoon theory before, I'll simply point you to the original, as conceived by Christine Miserandino, who has Lupus, another invisible illness. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

As Christine so deftly writes, “the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.” That is the essence of spoon theory.

I've learned shortcuts I can take to preserve my spoons as much as possible. On days when I have more spoons available to me, I spend a few hours making and freezing as many portions of food as possible. Then, on days when I can barely make the journey back from university with my eyes open, I can throw a portion of healthy, home-cooked food in the oven without chipping into tomorrow's spoons.

Another shortcut is the miracle of dry shampoo. I have long, thick hair, and washing my hair involves 10 extra minutes in the shower, followed by doing battle with the hair dryer. A quick blast of Batiste (a British dry shampoo brand, but Walgreens stocks it in the US) allows me to save a spoon for something else later that day.

But sometimes, I throw caution to the wind. I'm in my twenties, and there are days when I rebel against my limited spoons, where I turn a deliberate blind eye to pacing. Yesterday, I had the good fortune to attend an invite-only industry event for my university. I rest up the day before, got an early night, and I had everything laid out, ready for the morning. Despite my efforts to prepare, spending 6 hours on my feet, talking to industry professionals who were there to view my work, and the sensory overload that accompanied all of that left me sore, exhausted, and 100% spent. I took a cab home from the event, and immediately crawled into bed. By 8pm, I was falling asleep, nursing a weary body and aching head. Meanwhile, my colleagues were all still up and at 'em as the event turned from industry preview to launch-night party. 

All I could do was marvel at the Instagrams and Facebook posts rolling in from those I knew that were still there. It was a painful reminder of the impact my chronic illness has on not only my body, but the opportunities I'm able to enjoy. 

As Christine says, “Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.”

So here I am, 10am on a Tuesday morning. I already used most of today's spoons yesterday, but I have to somehow muster more energy for a meeting across town later today. What I do know is that having the language to understand and communicate these things has been helpful to me... it'll just take some time to iron out strategies to cope with the limited spoons I have each day.