Happy Holidays

(2/3) Me, myself, Stockholm, a crutch and a wheelchair

Stockholm

Looking out the window of the coach I was amazed at the passing landscape as we travelled through the suburbs toward Stockholm. I saw many cars completely buried in snow and walls of snow at the roadside. Because it was still snowing, the coach proceeded slowly forward. Normally the drive from the airport to the City Centre takes about twenty minutes, I suspect that it took about thirty minutes before we reached the final destination, the bus terminal in the heart of Stockholm. As we approached I saw the landscape change from apartment blocks to the beautiful buildings that Stockholm is known for. Suddenly, we went up a ramp and it was evident that we had arrived at the bus terminal.

As I gathered my things I realised that I was exhausted. I was the last one of the bus and thus my luggage and wheelchair were the last one in the cargo bay. Easy as a piece of cake, I lifted my ultra-light wheelchair and luggage from the bay. As the hotel was only 20 m from the terminal, I unfolded the chair, placed my crutch in the holder and my luggage over the seating. I would use the wheelchair as a walker for support. That would be easier if there was to much snow. As I was walking toward the exit, I realised that I forgot the name of the hotel. BRAIN FOG!!! D*MN, what a time and typical when you're tired. However, at that exact moment all I could remember was something BLUE. I went to the service desk: 'Excuse me, do you speak English? I am really tired and I forgot the name of my hotel. All I can remember is that it is supposedly only 20 meters from the terminal and something Blue,' I asked the young man behind the counter. I Can only imagine how ridiculous I must have sounded and still have to laugh at the thought of it.  There are several exits from the terminal and many hotels in the immediate vicinity. The man answered kindly 'Do you maybe mean 'The Royal Viking' from the Radisson Blu hotels?  Yes, that was it! At home I had not written the name of the hotel on a piece of paper because the name of the hotel was almost like the name of my mobile carrier, Mobile Vikings. Remembering the hotel would be simple I thought. Anyhow, the man showed me the easiest way to the hotel and three minutes later I was checking into the hotel.

My room was on the third floor next to the elevator. After bringing my luggage to my room, inspecting the room and saw that all was good, I made a quick call to the home front to let everyone know that I had reached final destination. It was after 1 PM and I was hungry. Across the street was a chain of steak restaurants, I went to eat something small there. It also gave me the chance to observe the inhabitants of Stockholm. They look closed and sophisticated, typical of most any major capitol in the world. I found that if you talk to them nicely and on a personal level trying to speak their own language, that they opened up. I learned very fast to say 'Tack' meaning 'thank you' and 'Tack tack' pronounced double so fast means 'you are welcome.' Being kind gave kindness back. The men next to my table explained local tipping customs and other tips and the waitress showed me the way to the shopping street. She even wrote a 'Thank you' with a big smile on my receipt.

As I had gone across the street with only my crutch and leaving the wheelchair in the hotel room, I decided to go to the main shopping street on foot with the crutch.  It was still snowing and was not a good idea. I saw people falling and slipping. Stockholm is not flat, and I had to manoeuvre through the snow slope up and down. I walked even more slowly than usual. Finding that most of the shops were expensive brand stores and the prices were outrageous in comparison to Belgium I decided to only buy a souvenir for Jason. Jason collects snow globes from all over the world and I chose a nice one for his collection.  I had heard that Stockholm was expensive but strangely the food in the restaurants are cheap in comparison. I also had the feeling that it was late because it was getting dark. Turns out it was only 3 PM. I knew that darkness started earlier than in Belgium but never suspected that in the winter at 3 PM darkness would already start. My body rhythm was totally confused.

Once back in the hotel, I hooked up with Line en Janne. It was nice to meet up with a good friend, you haven't seen in a while.  I first met Line in Ghent at the First International EDS Symposium standing outside smoking a cigarette.  There was an immediate click between us and we have emailed, Facebooked, and spoken with each other since. Having EDS has literally broadened my live in so many ways. You have your good days, your bad days, your coping days, but you also get to broaden and enrich your life in ways you would never thought possible.

The three of us went together for a bite to eat. They invited me for a drink, but I was very very very tired. Exhaustion is typical of EDS and I had also gotten up at 5 AM that morning. I passed and went to bed.

Conference Day

The next morning, I was up bright and early. Janne had already eaten breakfast but accompanied me to the breakfast room. A bit later, Line came for her cup of coffee. At 10 am the Nordic Delegate EDS Conference would start.

The conference started slowly because of the weather some participants were a bit delayed. It was nice seeing people I had met in Ghent and meeting new people as well. There were delegates from Denmark, Sweden, Norway (Line and Janne), Aland Island, and Finland. I was honoured to be allowed to participate. Some of the conference was done in English, but very often they fell back to their own language. I must be a natural linguist because I started understanding and could follow. I learned a lot and I was also able to give ideas and suggestions as well. Thanks guys for letting met come! The conference ended sometime in the evening and we all went to eat something together.

After everyone said their goodbyes and the participants staying in the hotel returned to their rooms, Line, Janne and I went to the pub a few doors further. It was an English pub. I really could relate to them and it was like a true girls night out. Yes EDS is in our lives, but that night not much over EDS was discussed. Janne was tired and left round 11 PM while Line and I stayed on. After a while we went back to the hotel bar and drank some Irish Whiskey's to finish the night off. I believe we went to our rooms around 1:30 in the am. I had a nice night and have become even closer with my new friends. I have made a friend for life, another soul mate!


(read part three next time)

(1/3) Me, myself, Stockholm, a crutch and a wheelchair

Journey to Stockholm

 A little while back an opportunity came my way to allow me to travel alone from Brussels to Stockholm for three days/two nights.  Line, my close friend and chairperson colleague from Norway asked me to join the Nordic countries EDS delegate conference! The thought had passed my mind not to go, the trip being so close to Christmas, but my family pushed me on!

Departure morning, I got up at 5 am to begin my trip to the airport with luggage, a crutch and my wheelchair! My husband dropped me off at the airport, helping me with the check-in. I had asked special assistance, especially because this would be my first trip in a wheelchair and all alone. With a big hug and kiss from Ronny, I started my journey.

Start of my trip alone

Just before customs, I had to report to Special Assistance office where I was asked if I could proceed alone to the gate or if I would need help to get to the gate. My plane would be leaving from Pier A, the Schengen pier at Brussels airport, I would need to only go to the first gate.  At the gate, an assistant would help me get on the plane and place my wheelchair in the cargo bay. I decided to venture on alone.

 After passing through customs, I had to take an elevator to a floor underground. I have never been to the A pier as I only travelled to and from Brussels via the International pier. I was surprised at the length of the tunnel. How am I going to wheel myself all that way?  Luckily, I realised that there were walking bands. I literally flew in a minute or 2 through the tunnel which was on a down way slope.

At the end of the tunnel I saw a large crowd of people. As I approached, I realised it was time for the security check. There was a special line for staff and persons with a disability and/or special assistance.  Passing security was an experience on its own. I had to remove, my coat, handbag, crutch, etc., place it in special buckets on a belt to go through a special scanner. So far the same security procedure like everyone else. As it was my turn to go through the person scanner, I was asked to wait a minute on the right side, because the person at the scanner was a male. He called for a female security guard. My wheelchair and I did not have to go through the scanner. I was happy that I previously had placed my emergency wheelchair repair kit and air pump in my luggage. Now I did not have to remove it from my wheelchair. The woman was correct and nice. I had to remove my shoes that were placed through the item scanner, my wheelchair was completely checked for any hidden things, and I was patted down from head to toe. Now I understood why I had to wait for a female security guard. I may have been allowed to go through a special and faster lane, but my overall security check takes much longer than a normal, non-suspicious person. After getting my shoes back on and hanging my coat over my wheelchair and my handbag around my neck resting on my knees, I proceeded on to the elevator ahead. Going up two floors, I finally had arrived at pier A, in the shops area. Maneuvering through the maze of shops, I reached the gate area and yes my gate was the first in site. Now I had a twenty minute wait to board the plane, passing the time to call Ronny that I was at the gate and by calling my best friend Vicky one last time. How I would miss talking to her. We talk to each other everyday, at least 5 times a day!

on the plane, I had taking pictures

On the plane

A special assistant came to walk me through the jetbridge and to load my wheelchair onto the cargo bay. Piece of cake, the first person on the plane. A few minutes later, the plane started to fill! I had an aisle seat with one seat left of me. A french speaking man had that seat, but he was panicking because he was claustrophobic and he had no window next to his seat. After take off he was allowed to move somewhere else and I had two seats for myself!

The flight was only two hours long and flew by. As we touched down, it was snowing and once the plane stopped I saw lots of snow out of the window. I looked out of the window for an approaching jetbridge, but none came. As I was the first one on the plane, I knew I would be the last one off. To my horror, I realised that Bromma airport an old school airport was and departing was done via a rickety metal stairway that was rolled to the plane. As the other passengers were leaving the plane, I started panicking a bit because I have troubles negotiating stairs, let alone in the snow! My mind was eased shortly thereafter when a special assistance person came to ask me if I could walk stairs and was told not to worry because a special cabin would come and retrieve me. Phew, a huge relief came over me.

Departing the plane

All the other passengers had left the plane, and the stairway was rolled away. A little truck with a cabin approached and a boarding plank was hooked onto the plane. My first chance to take a good look outside. Wow a mass of snow. I was impressed. With my crutch I had to walk sideways over the plank into the cabin and I saw that my wheelchair was already waiting for me to take place. I placed my seat cushions onto the wheelchair and sat down. I had taken the cushions into the plane with me out fear of getting lost in the cargo bay.  After the truck moved closer to the walkway, the backdoor opened and a lift platform took me down. The terminal was about 450 m away.  I did not see the special assistant, but I knew that he was bringing an other older lady to the terminal with a golf cart. I decided to start rolling toward the terminal. It was heavy work rolling through about 20 cm snow. More snow had previously fallen down, but it came so fast down that they could not keep up. About half way the assistant came driving his cart. He told me that I could have waited and he would have rolled me all the way.  I told him in English that I appreciate that but that I hadn't smoked a cigarette in hours. The assistant asked where I was from and I told him Belgium. He became quiet. Realising that he was confused about my American accent, I told him that I grew up in The States. We had a great conversation and he even brought me to the bus and carried my luggage. We said our goodbyes, he wished me a great trip and I thanked him for his kindness.

Flygbussarna to Stockholm

So here I was waiting on the Flygbussarna, the airport coach to Stockholm. I could have taken a taxi, but Stockholm is known for airport companies that overcharge. Anyway, a coach bus is a good and fast alternative and my hotel was only 20 m from the bus terminal. About 20 minutes later the bus arrived. The bus driver was a grumpy man, not very friendly, and he refused to help me. As I tried to throw my luggage into the luggage bay, I started slipping and another passenger helped me keep straight. The nice man even helped me lift my wheelchair into the bay. I know I thanked the man but still I want a special mention and thanks to the unknown man! In 20 minutes I would arrive in Stockholm! Almost at my destination!!!!

(read part two next time)

Stockholm

Friendships

It's funny sometimes, how things turn out, how you meet new people, how you make new friends, in ways you thought never to be possible!

Some people come into your life to disappear shortly thereafter, other people enter your life and friendships are made for life!

So I met my husband on the internet 15 years ago! He lived in Belgium and I lived in The Netherlands. We are now happily married for almost 13 years.

So I also met my best friend, Vicky, on a forum for EDS and Marfan patients. Who would have thought that we would become such bosom friends, true soul mates. In the beginning, we were both careful with each other, because there are truly some troubled spirits present on the net. Slowly, we approached each other and felt a connection. We exchanged phone numbers. I remember the first time that I called Vicky, her voice was so much deeper than I imagined. Again, it became obvious that we still had the click with each other and we decided to meet in person a few days later.  When we first saw each other it was like we knew each other for years, so natural.  We have been sharing sorrow and happiness with each other ever since.

So I met many other new friends on the net, through the patient foundation, neighbors, en even because of EDS. Made clicks with people I never imagined.

Thank you Ronny, Vicky, Mario, Veerle, Goddy, Brenda, Line, Lynn and many others I did not mention. Thank you for making my life richer!

Brain Fog ! ! !

My son had an appointment with his physical therapist........ I forgot

My husband asks me te do something...... I forgot

My daughter talks to me........ It goes in one ear and out another

I go back to the car a second time to lock the door .......... I forgot

B R A I N F O G:

Brain fog may be described as feelings of mental confusion or lack of mental clarity.  It is called brain fog because it can feel like a cloud that reduces your ability to think clearly.  It can cause a person to become forgetful, detached and often discouraged and depressed.  It usually is present most of the time, meaning it does not come and go, although it may become better or worse depending on what a person eats, or one’s state of rest and hydration.

I can go on and on and on and on with examples, but those with EDS will understand, family members usually don't.

As we get tired, we get forgetful, our mind is clouded and sometimes we do stupid things.

You may talk to us but we don't respond or hear you.

I am a person that on a good day can multi-task, on a bad day, I need all my concentration to do one thing right!

On those days, DAMN YOU EDS, DAMN YOU!

no more words, enough said.........

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!

Winter is coming!

Winter is coming! The first real cold has arrived and a first snow fall of the year is expected. How I love it when the scenery changes from a wet and dreary, trees without leaves changing to glistening white covered. A child playing in the snow, smoke rising out of a chimney from a snow covered house. The first Christmas light being hung outside. It looks always so magical, just a fairy tale!

Right a fairy tale because looks can be deceiving. Winter for me is watching out for the danger. Every step I make I can slip and fall. Just imagine, on a bright hot summery day, I walk on even underground and suddenly I am laying on the ground for no reason at all, it seems, just like I tripped over my own toes. A hip that may have gone out of joint, an ankle that twisted or for no apparent cause. If I can fall on those conditions, what will winter be for me, the slippery and icy underground to navigate while I try to keep my balance and my joints in place! I will be just like the old folks stuck inside while everyone else is playing in the snow outside. My crutch will not keep me stable, my wheelchair will spin.

The first snow falls and my husband wants to go skiing. When I was younger I did ski, always with a lot of pain and the accompanying fall accidents. How I wish I could do that walking in the snow, having a snowball fight, skiing.

I celebrate winter and have decided to enjoy it on another way! I transform my house into a magical living space. If everyone is outside enjoying the magic, I will enjoy the magic inside! A true indoor fairyland with a Christmas tree and magical decorations, a background music that brings peace and serenity.

Instead on focusing what I can not do, I have decided to focus on what I CAN DO! That is my way, that is what I have chosen for!

Understanding......

My bff Vicky is also a fervent blogger (http://zebratjeswereld.blogspot.be/2012/11/supervrouw.html) and recently wrote about the Super Woman! Sometimes, I get the impression that many people think that I am that type of person! Absolutely not!

Yes, I am a wife, a mother, a chairperson and advocate for the right for patients with Ehlers-Danlos and Marfan on national and international level, but a super woman that I am not.

Many people think that I am not sick, that I don't have symptoms because it seems that I do so much. 'It seems' that is the key expression.

I have a whole team of volunteers behind me to reach my goals, I have a cleaning person that once a week swings by to do the heavy housework, and mostly I have the support of my family: my loving husband Ronny, my daughter Ashley, my son-in-law Jonas and my youngest son Jason.

My house is a mess, clean but messy and not always to the standards as I would like, but my family copes, understand or jump in to help me do the chores.

Especially, my husband, how understanding can he be! He knows that if I went to the bi-yearly large patient conference, that I will come home and be horizontal for a week! Does he complain? No he does not, he understands and tries to do extra things for me, even after working hard at work himself! He understands when I have given myself to the cause, that I am practically crawling over the floor the next days from the pain. He does not always like it, but he knows how important the cause is.

He gives up, sometimes our quality time, because a crisis needs to be averted, an email or telephone calls must be urgently made! He gives up quality time because I fall asleep from exhaustion when I have had a rough day. He is there for me on the good days and bad. Of course, we struggle like others in our relation, but those moments are soon over because we talk and discuss a lot. We are truly a team.

It has been difficult for Ronny. First to accept the diagnosis, secondly to learn that two of his children have it as well, thirdly every time there is a new change, like a wheelchair that I sometimes have to use, or the stairs lift that was installed last week because climbing stairs has become very difficult for me. He may have his moment of grief at that time but he goes on!

Many patients in my world may think that I am not as ill as them. They should only know!

With a lot of humor, lots of resting, physical therapy, with a lot of pain, I go on. I will not let this EDS rule my life, I will rule it! It may seem that I am very active for those who see not behind closed doors. It's not that I try to hide it, but that I chose not to let this beast have control over me.

I do it all, little by little, and on other days nothing, through the support of my family, friends, my physical therapist Els (Mia en Sylvia) volunteers and patients! Thank you for giving me the strength to go on in my daily struggle and bringing a smile to my face!

A ZEBRA SAFARI

Who would have thought that I would start blogging.

It was never my intention! Why should I, I find my life pretty boring! 'Pretty boring', my best friend Vicky said, 'it's everything except boring!' I tried every excuse possible: What should I write about? I have nothing to tell? etc, etc, ...

Well, her I am with my own blog telling you about my daily life and thoughts, as an Ehlers-Danlos patient. I don't plan to bore you with always and only talking about EDS, but rather tell my story about my life, how I think, how I see things, how I experience things, how I cope with daily struggles!

I chose to write in English, although it is not my original native tongue. I was born in Germany with a Dutch father and a mother with Dutch-Indonesian roots, grew up in The Netherlands and immigrated to The States at the age of 12 after my mother remarried a Britt! So I spend my teenage years till my 26st birthday in The States before moving back to Europe, The Netherlands first to end up in Belgium married and becoming a Belgian citizen. English is second nature to me, I still dream and think English!

It was a hard and long road, the journey to Belgium! Restarted my life several times. My husband Ronny is my second husband but the only true love of my life! We have three children, Ashley (25), James (18) and Jason (11 almost 12). We have struggled through many battles of life, but that has made our love for each stronger and has brought us closer to each other. Over time in my blog, I will tell you a story here and there.

The struggle in finding the correct diagnosis has been long and difficult. I have had health issues, pains and complaints as long as I can remember. Seen many doctors, have had several wrong diagnoses to eventually end up with the diagnose of Ehlers-Danlos Syndrome, Hypermobile Type overlapping with Classical. Although I pretty much found the diagnose myself, well later confirmed by Genetic Specialists from The University Hospital Ghent, it was difficult to accept the diagnosis for me and my family. EDS can be quite a disabling illness. All my joints are extremely hypermobile and regularly on a daily basis dislocate partially or completely. I walk with a crutch and for longer distances, I use an active wheelchair. I use orthotics, mostly silver splints, and have a prosthetic in my right knee. I've undergone many operations and I am full of scars spread all over my body. Not normal scars but wide cigarette type scarring typical of Classical EDS. I have all kinds of other health symptoms typical of both types of EDS.

The symbol for EDS is the zebra. I'll explain another time the how's and why's. For this reason I have chosen to call my blog 'Zebra Safari.' It represents the wild and excitement in my life as I try to cope with daily life, a family, EDS and the organisation as the chairperson of the Flemish Patient Foundation for EDS and Marfan.

My daily life is a Zebra Safari!

You Who bares the name of EDS

 

YOU WHO BARES THE NAME of

 EDS

 

You are a central part of my life!

 

You determine my whole being;

You can make me shine,

but also drown me in sorrow!

I'll always will need to compensate

and am bound to the rules you made!

You rule me with an iron hand

and determine what I may and what I can't!

Sometimes you set me free

a short moment just for me!

You always call me back to you

to reclaim your life time judgement

back to your chains which you re-mend!

Still I won't give myself to you at will

to stride you, never settle

and allow you to win our battle!

We will always be each other's enemy

However, hate you I will not do

even if you never set me free!

I will accept that you are part of me

even at times I don't want to see!

While you may try to break me down

I will always try to regain my crown

and rebuild that what's been broken or lost!

We shall face each other often

a truce never to be reached

As we can only dream of peace

You who bares the name EDS

You who only knows the nature of your quest!

I might never understand and see

the reason you decided to chose me!

but acceptance of you, in my mind, I am free!