I am acutely aware of the global impact being sick and having a disability has. I live my life in this tiny little glass box, able to see out, but unable to leave. If I try, I get worse. Everything gets harder and then, within days to weeks (if only it was months to years, I could work with that!), I become less able to do even the little things I have worked very hard to achieve some independence through.
I can’t hold a toothbrush, I can’t turn the adapted tap handle, I can’t get out of bed no matter how hard I try. Joints dislocate more frequently and with no time to recover in between, things snowball. It takes longer and longer to get them sort of back and the damage done in the process increases as my muscles are too tired to compensate. My asthma gets worse, my blood pressure issues get worse and I faint more. I can’t sleep and I start to forget things, like when to eat or to drink water.
The harder I push, the less able I become until, eventually, I have a seizure and the migraine to top all migraines that becomes the last straw to break the camel’s back. I am stuck in bed, unable to move an inch and in that quiet dark room realisation eventually dawns. Willpower is not my friend. Living with Ehlers-Danlos Syndrome is a game of chess. Outsmart, do not try to outrun.
There is an inherent guild so closely tied to impairment that I am not sure if I will ever be able to move beyond it. I feel guilty for not pulling my weight. All the time. I feel guilty when I leave my three year old to play with someone else whilst I go nap. I feel guilty for not being as fit and slim as I am suppose to be with my condition. I feel guilty for putting sugar or creamer in my coffee. Guilty over the financial burden I am, guilty for being the ball and chain around loved one’s ankles, guilty for not contributing enough to making the world a better place.
I should try harder, do more, work harder, get better. There is always that in the back of my mind. If only I ate a healthier diet, exercised properly, sat up straight, avoided triggers more stringently, I would be able to take my place as a productive member of society. In practice, it turns out that this is an impossible goal. I am not making myself sick. I am not delusional and I am not actually that self indulgent. There are quite a few obstacles that make it harder, a lot harder, to achieve even the most basic of goals.
My joints dislocate pretty easily. They always have done. Even when I was super fit, before POTS sucked the life out of me in my teens, I had daily dislocations and subluxations that were excruciatingly painful. I remember leading a very active lifestyle as a child. I also remember trying to commit suicide for the first time when I as eleven. There were many more attempts over the following decade because I was in so much pain I couldn’t live with it and it took about another decade after I received a diagnosis for me to learn how to manage severe pain reasonably well. Swimming three miles a day, then running another three didn’t make me feel better. My joints were never stable and my muscles were never quite up to the job to compensate, even when I spent two hours a day in the gym working out. My pain levels have been pretty constant during my life and although I feel better about myself when I am fitter and I really do enjoy physical activities, it has never made a significant impact on my joint related systems.
Fatigue is probably my biggest nemesis. I remember a time when there were times where I wasn’t tired. I do not remember a day where I wasn’t absolutely shattered at some point. That’s the thing about living with chronic, constant pain. It’s exhausting. As a child, it was the type of exhaustion I could manage as long as I had regular breaks and a good nights’ sleep. Once I hit my teens, I started having dizzy spells and palpitations and fatigue so crushing I didn’t think I could lift my arm enough in the morning to get out of the covers, never mind being able to get out of bed. Eventually I was diagnosed with Chronic Fatigue Syndrome and then, later with POTS and a bunch of other dysautonomic conditions. Being tired is something you can learn to live with, but not without making some major concessions. I decondition extremely quickly. Three in days in bed with a migraine and when I turn over in bed my heart rate shoots up to 130+, becomes irregular and my blood pressure plummets. It takes days to be able to work back up to being able to sit down and get up without fainting or getting so dizzy I fall over and weeks to get back to being able to walk from one room of the house to another. It takes about a month to make it to the bottom of the back garden.
Getting fit is an elusive obstacle. I have severe migraines more than 4 days out of 7 that confine me to bed and when it takes about a month to recover after, there is never enough time. Just as I get a bit better, I slide back down. In an ideal world, I would do some exercises in bed, I would keep my muscles as toned as I could, but in practice, when twitching makes me cry, doing leg exercises is just beyond me. I sleep and I try not to move and eventually, the pain subsides enough that I can get back to working on muscle tone.
My asthma is controlled at the moment with multiple medications including a steroid inhaler. I have an atypical type of asthma. Initially diagnosed as Brittle Asthma Type 2 as I was completely asymptomatic except for the occasional life threatening rapid onset attack, things changes when I relocated to the humid wet cold climate in the UK. I started having regular symptoms, first just in the winter, then also in the summer on hot days, then whenever I got out of breath and eventually, all the time. I couldn’t sleep, I couldn’t walk, I spent a lot of time in hospital. I stopped breathing a few times and ended up in ICU. I eventually ended up with an excellent specialist in a specialist hospital clinic who found a combination of meds combined with trigger management that helped a whole bunch. Pregnancy also helped and my asthma has been significantly better the last three years, but I still have regular attacks, they are still quite severe and I am still boxed in by them. Exercise is a trigger, dust is a trigger, cold air and being at the upper end of a healthy weight isn’t doing me any favours.
This balancing act between triggering and treating pain, fatigue, breathing issues, circulation issues, chronic migraines, dislocations and a bunch of other stuff I won’t get into now, makes it extremely difficult to make yourself better. I am also aware that getting better is not the best of goals to aim for. Stabilizing symptoms is a much better and more realistic outcome.
I do the best I can. It isn’t nearly good enough, but it is the best I can do at this time. Having more help is certainly helping, getting less stressed out helps too, learning to make sure there is time for enjoyable activities and building in time to be sick and out of commission in the schedule also makes a huge difference. As our house becomes more accessible bit by bit and I am able to do more without hurting myself in the process, my outlook begin to change.
The glass box feels less like a cage and more like a safe haven. Instead of constantly trying to break out, I realise that it is not a static box. I can grow it, if I nurture it and I shrink it when I push too hard and damage it when I pound on the walls. The box isn’t there to contain me, it’s there to support me and enable me. It’s a common error in judgement to view aids as confinement. “Confined to a wheelchair” used to be a popular expression. I certainly sometimes resent my ‘chair. But it has enabled me to things and go places I would not otherwise be able to do.
My box keeps me safe. It provides a space where I can breathe freely. I see people walking around freely and for an instant, I am jealous. Then I realise that my box is invisible to them and theirs are invisible to me. Maybe everyone has a box, different shapes and different sizes, but everyone has their limitations and their own obstacles to overcome. Life isn’t easy and for the most part, our hurdles are private, personal things invisible to the world. Even when they are visible, in the shape of a wheelchair or visible disability, others only really see the tip of an ice-berg. It is a tiny glimpse and we can’t imagine what someone else’s life is like, particularly not someone we pass on the street for just a moment.
Our boxes keep us safe. From the outside world, somewhat, but mostly from ourselves. I am my worst critic. I constantly judge myself and I always come up short in my own estimates. Nothing I do is ever quite good enough and I never try hard enough. Maybe some day, hopefully soon, I can let go of all these negative emotions. I was so stressed out by the meeting on Monday I had a seizure followed by a six day migraine that is only now starting to lift. Silly me. The meeting continued without me, Chris and I had made notes for it together, and it went as well as these things can go. Definitely my own worst enemy.
I am generally a pretty tolerable person. I forgive easily and try to give people the benefit of the doubt. I give second and third and as many as you need chances to the people I meet because I choose to believe in good intentions and that except for the rare exception, people mean well and they do try very hard to be stand up citizens. I do not extend this courtesy to myself and maybe it is about time that I do. If it wasn’t for the box, I would disregard all the warnings my body give me and keep going until I fell over. Even in the box, I am always pushing and hammering and trying all the doors.
Boxes are not bad things. They could be quite comfortable things. Even a home maybe. Maybe they aren’t prisons, their function not to trap and in their own, limiting way, they could hold the key to freedom.