Just surviving

It has been quiet on my end. It is a time for relaxation and vacation. Or so it should be!  For me it is all that but also a time to survive each day, getting through, day by day, creatively. 

Last month I ventured with my husband and son to Hungary for our annual vacation. The trip to Hungary would take at least 14 hours by car. The week before our trip I tried to rest as much as possible gearing up for the trip. It had been decided that the trip would be driven over two days with a stopover in Regensburg, Germany. This way, frequent rest stops, would hopefully be less severe on my body and Ronny could do the driving all himself. This way, I would still be human more or less once we arrived in Hungary and I would not need waste days recuperating from the trip! Of course, I left with an arsenal  of medication and my wheelchair as my faithful companion. 

You see, dear reader, an EDS patient, gets tired and pain from simply sitting in one position during a car trip. The life of an EDS patient is not simple as we need to recuperate from most things we do. That is why most of us use a wheelchair to help save energy to get through the day and to minimize the pain we experience. Everything an EDS patient does takes far more energy than a healthy person and everything we do causes pain. You can see how we are always living in a vicious cycle.

What most people don't understand is that EDS is far more than just dislocating our joints. Connective tissue is everywhere, in our joints, our organs, our skin. Connective tissue is just that it connects everything in our body, keeps it all together. An EDS patient has faulty connective tissues. For example, connective tissue keeps all joints together. An EDS patient relies on their muscles instead of the faulty tissue, therefore using more energy than healthy people. The autonomic system is under extra stress and gets out of bound sending wrong signals. The digestive system etc does not work as it should. You see EDS is much more than dislocated limbs.

Now you may understand that I focused on getting through the vacation, trying and enjoying it all on my own terms. That meant that I could spend less time with friends, less time with other important things. 

You may think that all I do, I must be healthy. No dear reader you are so wrong. Everything I do comes at a price: pain, discomfort, exhaustion, fevers, deregulated systems..... A price that not only I feel but my family as well!

I choose to give up valuable time for my work as president of the patient foundation. I give up my time and that of my family. I also pay the price heavily. Behind close doors, I have excruciating pain, am at times so tired that lifting my head up is an immense effort. This is what I choose to do not to show the world, not to show friends, not to show patients. But belief me, I am not the super woman most people think I am. I am an Ehlers-Danlos patient who chooses to live life as much as I can and who chooses to pay the price for it. I am trying to live in harmony with my condition and choose to do my suffering behind closed doors.

All I ask from the rest of the world, don't judge a book by its cover. I and other patients may not look sick but we are just trying to survive day by day, hour by hour, each on our own way, on our own terms!

On Saturday 7 September, the foundation is hosting a Bingo Benefit! Come and/or support us, more info here:  http://www.bindweefsel.be/?q=node/117

A typical day.......

I wake up refreshed and have no pain. None of my joints have gone out of place and I feel great! I jump out of bed, run down the stairs to make some coffee. Few minutes later, with a cuppa in the hand, I think back on my wonderful restful sleep!

Mmmm, I am bursting with energy, so I decide to jump directly into doing my household chores after finishing my coffee. I empty the dishwasher. I vacuum clean and mob all of the downstairs. Still full of energy, I decide to clean the bathroom floor to ceiling. I look at my watch and it is only 11 o'clock. Time for another cup of coffee.

At 12:30 I step into car to meet a friend for lunch at the mall. After having a satisfying meal, my girlfriend and I do some window shopping. Around 3 pm I say goodbye to my friend and go do some grocery shopping. I need to be home round 4 pm as my son returns from school. Once home, I unpack the groceries and start on the evening meal! I love to cook large dinners, today I am planning to make potatoes with meatloaf and gravy and fresh vegetables. My family loves chocolate mouse and I decide to make some fresh for dessert tonight. I prefer to beat the mouse by hand. After dinner, I clean the kitchen and place the dishes in the dishwasher. Time to watch some TV with the family. Satisfied I reflect on the fine day I had!

BEEP BEEP BEEEEEP BEEEEP BEEEEEEEP!

I suddenly realise I am in bed waking up to the most horrible set of sounds. My hand reaches toward the alarm clock, or at least tries to reach the alarm clock, but the shoulder is dislocated and the hand won't reach. In agony I try to support myself on my arm but my elbow bends the wrong way and two of my fingers dislocate. damn I forgot to put my splints back on after washing up last night.

BEEP BEEP BEEEEEP BEEEEP BEEEEEEEP

'O shut up!' I think by myself while I set my shoulder back on its place and finally shut the alarm clock off. I am groggy in my head and my body feels like a train ran over it. I crawl out of bed and stumble toward the stairs. As I reach the stairs, I realise that I must have dislocated my hip during the night and set it back on the right place before I start to descend Mount Everest. Very slowly, one step at a time while supporting myself on the banister. My right knee does not bend and I can't walk like a normal person down the stairs. My hip starts to dislocate and I try to keep my balance. 4 minutes later I finally reach the bottom, happy that I did not dislocate a shoulder. First thing, I put my silver splints back on my fingers and hand. They keep my fingers and thumb from dislocating. Secondly, I take my pain meds, not a paracetamol or an ibuprofen, they don't do the trick anymore, something heavier. My husband already made the coffee and I poor myself a cup, still trying to wake up! I did not sleep very well last night, lots of pain and several dislocating limbs and joints.

After waving everyone off to work or school, I secretly wish that I still could go to work. How I miss the social contact and the satisfaction of working, and not to forget the financial benefits from working. I decide after a while to try and do some chores. I decide to vacuum clean the living room. I have a cleaning person that comes once a week to help with the heavy work such as vacuum cleaning, but sometimes once a week vacuum cleaning is not enough. I get the vacuum out and while pulling it into the living room I hurt my other elbow. Ouch, another large bruise. I start vacuuming, but a pillow is in the way. I bend over to reach for it and I feel my spine slide around, I lose my balance and fall on the ground. While trying to catch myself I dislocate a wrist and some fingers while the hose of the vacuum hits my chin. Pfff I am full bruises, my body aches and I am soooooo tired. I haven't even been busy for 10 minutes and I need to take a rest. Around twelve I am finally finished vacuuming the living: vacuuming, resting, vacuuming. The rest for tomorrow.

After eating something, I take a nap. I am exhausted! Around five I start to cook dinner. How I would love to have some simple boiled potatoes, but peeling potatoes is hell for me. I love cooking, but need to be very inventive to be able to cook. Stirring is difficult, beating by hand is exhausting and my joints won't allow it. Somehow I manage to prepare a well cooked meal.

The kids and husband clean the kitchen and put the dishes away for me.

Tomorrow I will do some grocery shopping. That will be my chore of the day! I try to do something everyday!

How I wish that I could do some window shopping with a friend. Too exhausting and too painful. My legs won't carry me very far. For longer distances I need to use an active custom made wheelchair. I usually go do the large shopping with my husband who will push me around. I can wheel myself for a bit, but very often my shoulders will dislocate and strangely my jaw dislocates as well if I push myself to the very outer limit!

I don't look sick and people judge me often very wrongly, but life is not simple and I need to be creative to get things done! Still I don't let it stop me and I get on!