What I'm Learning About Acceptance in Life With Disability

If only they knew just how well I am doing. If only they knew just what it had taken out of me to get here in the first place! That in itself was like running a marathon. When I had finished getting ready, I was already exhausted. In my mind, I hear the doctor saying, “it’s just because you are out of condition.” All I wanted to do was resort to staying home in bed because I can manage my pain better there, but staying in bed will not get me “in condition.”

I can see them looking at me and wondering why I am always the one at the back of the group, especially uphill. I don’t give in when I know I should. I can hear every fibre of my being screaming at me, telling me I am an idiot and that I am going to pay for this, and I know my body will hold me to it and I will pay for every step I take. I keep going, and as I go the pain is getting worse, and my walking is getting ever slower as my legs are no longer lifting to the height they should. In fact, they are barely lifting off the floor at all, and this annoys me as I have told my legs how far they need to lift but my body is just not responding—or rather it is responding to the best of its ability, but the lack of movement and increased level of pain is upsetting and annoying me.

It’s lunchtime. They all sit to eat, laughing and talking about just how lovely the scenery was on the walk. How wonderful it would be if they had all day so they could explore the paths off to the side. These people have not been on my walk. My walk has all been uphill, the walk has been spent focused fully on the ground in front of my feet, plotting my next step so I get a solid footing as I know any slip, trip, or fall will be a joint out of place, a sprain, strain, or worse. I saw the floor. My focus has been on walking through the pain and trying to stay upright. Physically and mentally challenging and exhausting.

I know if I sat to join them for lunch—as I once would have done—then I wouldn’t back up. I would stiffen up, everything swelling in sympathy for all the trauma my body has incurred on this delightful “jolly jaunt for beginners.” I have not stopped walking as I pace; this is most annoying to others but it’s so I don’t stiffen up. I still need to get back to my car where I know that the drive home will reduce me to the tears I have been holding back. I eat as I pace to try and keep my body working. Jokes were cracked about me being at the back and I just smile because they don’t know, and I cannot explain. The words won’t come out, they just eat me up inside as I try to stop myself from crying and focus on the floor.

They cannot physically see my disability. They can not see I am hyper-mobile. To them, I look like a girl in the wrong place. I am human and I want to walk, in fact, I used to walk for miles but all that has changed. I know that any future walking is on my terms, and not the terms of others. I cannot have dogs pulling on leads as I am unstable enough on my feet, no mad dashes here or there, and no pushing myself as I have been. All in the quest to be amongst people and try to be “normal,” instead of spending all day at home alone because it is easier than trying to explain.

Thankfully lunch is short, and they set off back and yes, you guessed it, I am right at the back. Everyone has a partner they are talking to as they walk. I walk alone. I have very few friends. My disabilities have seen to that. My inability to be as I once was, has lost me so many people while on my journey through life. Nobody visits because I am no longer “fun” to be around. Nobody visits because nobody knows where I am. I moved to a place where it doesn’t matter because nobody knows my name.

The isolation has got worse over the years and sometimes the walls close in and you have to get out, so here I am in the pouring rain walking—if I can call it that—back down to my car. I say down as all the walk here seemed to be uphill, but it’s just as bad because my body mechanics are strained to the maximum, trying to stop me from falling and compensating for the gradient of the ground by putting the pressure on my ankles, knees, and hips (all the places I really don’t need any more stress). Why did I think that I could do this? Because I once could. How did I think I would meet people and make new friends? Because I once did. I can see the end in the distance, and I keep my focus and finally, I am there.

I say my goodbyes and give thanks as I try to make a quick escape. They are all going for a meal now. But not me; I made up an excuse as to why I cannot join them because telling the truth is just too difficult. I need to get to my car. I finally arrive at my vehicle in a hazy fog of pain, and I begin to remove the outer layers over my boots because I know that as soon as I take them off, my ankles will swell, and I need to drive home yet. I close the boot and open the driver’s door. I long to climb in the passenger side. I need to take pain relief and rest, but I still have to get to my bed. I sit sideways in the seat and painfully grab each leg in turn and lift them into the car.

Finally, I can face forward and try to contemplate this journey home.I wave as I leave the car park. The swelling and stiffness have already started. I will be lucky to get out once I am home, but at least I will be closer than I am now. I am so tired. I wind down the window to make the car cold and force me awake. I pull up on the driveway and just sit there crying. Crying because I made it home. Crying because I am in so much pain. Crying because I know that I still have to get inside. It’s cold inside. The fire isn’t on because I have come out, and the heating costs too much to turn on, even though the cold makes my HEDS and fibromyalgia worse. I push the thought to the back of my mind as being cold is the least of my issues. I have to get inside my house. I don’t know how, but I make it. I make it one painful movement at a time. Focusing on the space in front of me where I will move to next and not the final goal.

I am inside, and as soon as I can I have to remove my clothing because the pressure of it on my skin is immense. My boots are still on as I shuffle to my bed. I sit on the side and remove them. I physically lift each leg into bed and just lay there. Today has been too much.The house is quiet. There is so much to do but it can wait because nobody visits, and nobody will see the mud I have trailed from the outside through the house to my room. Nobody will see the washing in a pile that needs doing as the clothes are not only covered in mud but are soaked, not from the rain but from the sweat my body pumped out in its attempt to regulate itself. The clothes will need to be washed or they will begin to smell worse and go moldy—but that is a task for another day.

I painfully take my medication, struggling to press the pills from the packs because they don’t make the packs for people who have limited dexterity. As I lay there in the silence under the covers, I take in just how my body is feeling from toe to head. It’s a bit like the engine management of the car running its checks before it starts, running through the sequence to ensure all parts are OK. My check engine light is on and flashing. I am numb from the cold yet still in agony from the pain I have enforced on myself I slowly check up my body, realizing just the amount of swelling I have and making a mental note that this level of swelling and pain just isn’t good. The medication has kicked in and I slip away into an exhausting sleep. I survived.

The next morning, I awaken from the pain and stiffness and wonder what on earth has gone wrong for me to be in this much pain. And then I remember my “jolly jaunt for beginners.” There was nothing jolly about it. Not one single thing. I got outside. I met people. I exercised. I did this like I am supposed to as directed by my doctor so I could be “in condition.” At this moment I know even the most valid world-renowned expert would not recondition my body. My body is so far gone it needs to be put out in the rubbish or recycled if any of it is worthy.

I take more pain relief and do the check body routine as I start with my toes. I have blisters forming it seems. These just add insult to injury. My ankles are nicely swollen and painful. My calf muscles and shin muscles are painful. My knees are sore and swollen. My thighs are sore. My hips are in abject agony, and every muscle, ligament, and tendon is inflamed and in pain. My spine is stiff, swollen, and painful. My abdominal muscles ache. My arms ache as do my shoulders in every place possible, and in some places I didn’t know I even had. My neck is not moving well at all side to side nor up and down due to the swelling and pain and although my head is on my shoulders my jaw aches and my tongue is raw as I have a habit of clenching my teeth and running my tongue backwards and forwards as I focus and concentrate. I had to focus and concentrate a lot yesterday.

I now have to decide if my need for food is greater than the debilitating pain I am in. Right now, as on most days, my need for food is not as high as my need to rest and try to subdue the pain. I lay in silence and watch my breath cloud the air before me in this cold house and decide that it is better to stay in bed than face the day.

Today, I pay the price for yesterday, and tomorrow isn’t looking too great either. I have time to rethink everything as I realize the old me has definitely gone, and this shadow that has replaced me has to rethink just what is best for herself. Appreciation for the simple things like breathing, seeing, and thinking have to be accepted as my greatest achievement today as moving just isn’t going to happen. I am grateful for the peace I have. I am grateful for the lack of stress or demands from outside sources.

I will just lay here and appreciate that I am perfectly imperfect, and that’s OK.