Summertime and activism

It's been a while since my last post. I have been having pain in my hands so was limiting my typing for a while, and then I've just been really busy so I haven't really had time to just sit down (or lie down) to write anything. 

Anyways. I'm glad to announce that my hand pain has improved some, so it seems resting from blogging for a while did help. Hopefully I'll be back to blogging more now.

June is also quite a mixed month for me nowadays as June 8th marked 1 year since my grandmother passed away after a months battle against the effects of a severe stroke. I was there that day at the hospital and held her hand as she passed away and had to deal with a lot that day, but not more than I could handle. I did what I felt was right for me when it comes to being in the room, telling my uncle on the phone that my grandmother was gone and making the call to my mum to let her know as well. Calls the nurses had offered to make, but I felt it was better I did it since I was there and able to. So of course, June 8th was very emotional for me, I cried several times and kinda relived that day a year ago, looking at the time and remembering what I was doing and so on. 

I am by no means traumatized by that day, nor am I traumatized by experiencing a similar situation in 1999 when my adoptive grandmother passed away before I even turned 14 and all the adults said I was too young, but I insisted on staying and I'm glad I did. 

It's just that first year, the year of all the firsts that I like to call it. All the birthdays and holidays in the first year did go surprisingly well, but on June 8th my facade crumbled from time to time and I just let it all out that I had been keeping within me for a long time, then I was fine again, and I am fine. 

I focus on the positives and all the happy memories. 

I focus on the fact that I got 16 very happy years together with my grandmother and that she was at good health through those years. I focus on the fact that she had been longing for us to find her and that we found her on time so we got all those beautiful years. 

Things could have been so different you know. She could have given my mum away because of not wanting her, she could have wanted nothing to do with us when we found her, or we could have found her at poor health or even too late. But we found her when she was 69 and doing really well, she had been waiting for 43 years for mum to contact her, and those first 11,5 years of my life where my grandmother wasn't actively in my life, those have been well covered for and mum and my grandmother caught up on their 43 years apart as well! 

So I focus on the positives and cherish the memories. I live, I laugh and I love! 

Other than the one year since my grandmother's passing, this summer has been pretty busy this far. I've been buzzing around like a busy bumblebee lately. 

I celebrated our National Day on June 6th at a friend's place over 50 miles away, my friend hosted a BBQ party and Party Lite demonstration for a group of friends to celebrate our National Day. It was a lovely day and it was great to get to hang out with that group of friends again, hadn't met some of them in three years now and a couple of them had been about 9 months since we last met, so it was quite the reunion and we were very fortunate with the weather too! No rain until I was in the car driving back home again in the late afternoon. 

On June 10th mum and I went to a nearby lake in the afternoon as we were having a heat wave here, the lake was already as warm as you'd expect it to be in July or August so both mum and I were just soaking in the water for quite a while before getting up to dry in the sun, and then jump into the lake again and dry in the sun once more before going back home. Dad was on a bus trip to Germany at the time and they had a heat wave there as well with extreme temperatures of about 39C which is little over 100F which is extreme for northern Europe. You normally only see those temperatures down in the south like on Balkan or Greece, parts of Spain and such. 

Last Wednesday I took part in a peaceful demonstration in Gothenburg against the inaccessible public transportation. We were 10 wheelchair users that occupied a tram for about 1.5 hour, stopping the traffic past that stop during that time, protesting that there's currently only one or two designated wheelchair spots on the trams and those spots are also used by prams, and luggage which means a lot of the time, a wheelchair user will have to wait for a long time before a tram comes where he or she can actually get on to go to their destination. There's plenty of space on the tram that could easily be made into a wheelchair spot. We'd like to see four wheelchair spots on the trams that currently has two, that would mean it's more likely a disabled person can get on a tram sooner, and it also means it would at least in theory be possible for a group of up to four wheelchair users to travel together by public transportation. It's really not much to ask for on a vehicle that's 40 meters long and weighs several tons, it has the capacity, it's just the city and the public transportation company that are asshats. The average city bus in America has more designated wheelchair spots than a tram in Gothenburg has, and the average bus is only about half the length of a tram. 

We're also protesting against the often broken ramps into the trams and the fact that many wheelchair users have been verbally abused by tram drivers, some have even been physically abused which resulted in bruises. So we'd also like to see an improved attitude and values among the drivers of buses and trams. 

I guess you could call me an accessibility activist these days! And even though I am able to stand up and walk past an obstacle, far from everyone in a wheelchair can! I have friends who can not walk at all, in fact, my friend who took the initiative to the demonstration in Gothenburg, has a high level spinal cord injury, he can't just get up and walk past an obstacle! 

I always think one step further when I look at accessibility and think "How would this work for someone with a spinal cord injury who can not walk, or due to their injury have limited or no trunk control?"

My friends and I don't want to stop the traffic and occupy trams, all we want is to be able to use the trams more easily as at this moment, we belong to the category of customers that gets discriminated against the most. 

If a group of four walking friends wants to use the public transport to go somewhere, they can just get on the bus or tram and go. If a group of as little as three wheelchair users wants to go somewhere by public transport, they can not go together in Gothenburg. Even just two wheelchair users going somewhere together, can have a really hard time to actually get onto the same tram due to the designated wheelchair space(s) often already being taken.

And as always, everything that makes something more accessible for the disabled, also helps everyone else! Ramps or elevators helps prams as well, or people with a lot of luggage, same goes with curbs that are lower or at least angled so it becomes ramp like. Easy to read signs for people impaired vision and people with mental diagnoses also helps tourists and newly arrived immigrants who don't know the language. There's only benefits by having the public space and shops accessible! 

On a completely different note, this past Friday was Midsummer's Eve and my parents and I always celebrate it by an old castle and I always stay in my parents RV over the weekend. It's pure meditation being at the campsite next to the castle, I was just relaxing in the RV on Saturday and despite there being many caravans and RV's in the camp site, the only sound outside was from birds chirping in the trees. It's on times like that you truly feel alive! And it reminds me of my childhood as well as I grew up traveling around every summer, living in a caravan for up to 5 weeks at a time. I miss going out camping like that, so truly enjoy it when I do stay overnight in the RV with my parents these days. My parents went to the campsite already on Thursday, but I came after in the car on Friday. 

There's something special about being in a camping vehicle, especially when you've grown up with it. I don't think an RV is as cozy as a caravan is, but yeah, there's something special about it anyways. Something about the simple conditions compared to home, but it's still comfortable. And the pull down bed in the RV is very cozy at night, and also very comfy once you just manage to climb up there! 

Oh the ups and downs and accessible towns.

Yesterday I had a pretty nasty day. I woke up in a severe pain flare which nearly landed me in the ER due to the pain level. My hips felt like someone had hit them repeatedly with a baseball bat, my SI joints felt like someone was trying to take them apart with a crowbar, my knees had a kind of grinding pain in them, my neck was (and in a way still is) throwing a hissy fit and I had a spinal headache from my neck. Needless to say, I was in agony and I stayed in bed pretty much all day!

Seeing how I had big plans for today, I was pretty worried yesterday. I would have absolutely hated to have to cancel plans again, especially since it was an activity I had really been looking forward to!

Fortunately, this morning when I woke up, my pain level had eased enough so I felt well enough to drive and go to the event I had planned going to. I knew going would take a lot from me physically as it meant a 100 mile round trip, this time completely on my own, but at the same time, I've always loved driving, especially longer distances! I truly miss being able zooming mile after mile after mile like I used to. Driving today causes so much pain, much due to me driving a car that doesn't suit my needs. I drive a stick shift car without cruise control, but really should be driving an automatic car with cruise control, or even a handicap adapted car where you can drive either with feet or with hand controls, and of course with cruise control. Hopefully one day I'll have a car that fits my needs, either my own, or share with my parents- it's their stick shift car that I currently drive when I need to drive.

Anyways, I love driving! It's such a freedom to get behind the wheel and just go somewhere, see the landscape zoom past outside, see cars and trucks from different countries, see towns flash by as you drive through them, all while listening to some good radio station pretty loudly!

Today's freedom venture out of town was to attend a meeting, a meeting with a newly started political party aiming to improve the accessibility in Gothenburg to begin with, hopefully they'll go national as well. It's such a great initiative, just sad that it's needed. Even though I live out of town from where they're active now, I'll do ALL I can to help out in every way I can and attend as many meetings and events as my body can handle! Awareness and accessibility is something I have a passion for, it's so important, but often forgotten by the people who live a healthy and unlimited life.

People living with a condition or disability have to fight to be seen, to be heard and to get around! It's 2014 now, the days of putting disabled people in institutions are long gone, yet the public space outside isn't adapted to get around in. People living with a disability are frequently discriminated against by cities placing high curbs, cobble stones instead of smooth surfaces, no ramps or too steep ramps, no elevator (or a long detour to get to one- and you wonder why some wheelchair users simply use the escalator?)
We're constantly facing obstacles when out and about. All we want is independence and to get around like everyone else, use the same entrance like everyone else, be able to use public transportation without having to ask for assistance etc.

I'm really glad my Ehlers-Danlos decided to behave well enough today for me to attend this meeting in Gothenburg. I met some truly awesome people and I can't wait to see them all again!
I feel very motivated now! I have my local battle in town for better accessibility, and I'm definitely going to be in Gothenburg as much as I possibly can for events for accessibility!

I can always get out of my wheelchair to walk past an obstacle, but it shouldn't be needed! And I fight for those who can't get out of their wheelchairs to walk past an obstacle! My friend who started this political party and hosted the meeting today, is a paraplegic, he can't just stand up from his wheelchair and walk past an obstacle, his legs doesn't work at all!
Everything that helps someone in a wheelchair, makes life easier for EVERYONE else!

Ten years!

I'm writing this post a bit early actually, seeing how most of my readers are from America. But seeing how I may be unable to blog any tomorrow I figured I may as well write this post now before I go to sleep.

April 30th of this year marks 10 years since my high school graduation! I can not believe it's already been 10 years since I ran out of the school, cheering while wearing my graduation hat! I remember the school years before high school, high school felt so distant into the future and each school year felt like an eternity, then when finally reaching high school, those three years just flew by and the years since have really been speeding by! It's hard to imagine that 10 years ago at this time, I was still a high school student, laying in bed in my little apartment a couple of miles from school, sleeping nervously and having less than 12 hours left as a student.
I got up early on graduation morning to get ready and then the school's bus came to pick me and other students up in the town to drive us all together to school for a traditional graduation breakfast consisting of Champagne (or in our case, alcohol free cider) and various fruits and bread, a generally festive breakfast together with the whole class and our teachers, just chitchatting, signing each others hats, hugging and looking forward to the graduation ceremony that was held later in the day.

Family and friends came to school to attend the ceremony and celebrate, some had many coming if they lived nearby, for me who had nearly 100 miles to school, only my parents, my grandmother and a friend came, and my at the time boyfriend who was driving the rental car I had as graduation ride, a 1970 Cadillac DeVille with cab. That car was quite a sweet ride to graduate in I must say!

It was definitely a joy traveling almost 100 miles in that car! It was surprisingly comfortable too! Though we did put the roof up for the long drive home. 

Anyways, before going home we obviously had the graduation ceremony in the Auditorium of the school. Music was performed, speeches held and diplomas given out, then parents and so on went outside to wait for us students to come running out from the school singing and cheering!

Cruised around the town for a bit before driving home, didn't have a whole lot of time due to the long journey and the fact that I had a graduation party later in the afternoon in my hometown for family and friends so I needed to be back at a certain time. 

Here I am with my sign and some of the flowers I got, and wearing my hat and graduation outfit. It's traditional for girls to wear white when graduating high schools, either white pants and a jacket like I did, or a white dress. Guys traditionally wear a suit, preferably black, so the attire is pretty formal when graduating high school, note how we don't wear any special robes and such.

Here's one of me where the hat can be seen more clearly, and it's not a sailors hat, it's a Swedish high school graduation hat and the band around it is dark green, representing the high school program I attended: Agricultural. Each program has its own color, but you can also choose to just have black for high school in general. I choose to go with program specific and also choose to have my major and years embroidered onto the colored band. I wish I could have gotten the school name and years embroidered but we only got the choice of major and years or no embroidery at all at the time, unfortunately.

And yes, I did have really long hair at the time! I'm not sure if that is the longest I've had, or if my hair was indeed longer in 2011 before I cut it to shoulder length, but anyways.

Ten years has passed now since that day. And a lot of things have happened in those ten years. I have been working different jobs, gained a lot of life experience, lived abroad for a few years, worked abroad too, I've traveled some, some travels were near, some really far, all the way to China actually. 

I've attended some college where I studied some Chinese, Mandarin, and not just any college for that matter but one of the top universities in Sweden, Lund University. 

I've got to know people from all over the world, I have advanced my English level far beyond the level any school could have taught me, I started this blog some years ago and am now nearing 10000 hits on it! I could have never imagined when I started this blog that so many people would read it!

I've also in these last ten years found a lot of answers to mysteries in my life, namely health issues that I've had since childhood, my Ehlers-Danlos Syndrome. 

I have gone from a very active young adult, to a still relatively young adult living with a disability but still taking on each day with a smile and a fighter spirit from out of this world. I am Chronically Awesome and I'm damn proud of who I am! I am an awareness advocate for Ehlers-Danlos Syndrome and other rare conditions and disabilities. 

I am someone! Someone who may not be able to work a regular job any longer and am on disability, but I am someone, someone who has a very meaningful, happy life, someone who hopes her positive attitude may inspire others to think more positively about their own life! If I can change even just one person's life to the better, that is huge! 

And that's why I keep posting in this blog, and share things from my own life, things that has helped me or does help me in coping with a debilitating condition. I choose to be very open about my condition, and I write both about good and bad things. If I was to say everything about living with Ehlers-Danlos is fine, I'd lie! It's a condition that I wouldn't even wish upon my worst enemy, but you CAN live well with it, and a positive attitude helps a lot there! 

Ehlers-Danlos Syndrome has forced me to rethink much in my life, change a lot of plans and put dreams on ice, but it has not stopped me from living a purposeful life!

I sometimes look back to the time before my diagnose, to the time where I was still in high school and often wonder what my life would have looked like had I chosen a less physically demanding education and career after high school. I literally abused my body for ten years before my crash came in 2010-2011 that ultimately lead to me being diagnosed in 2012. I often wonder what degree I would have aimed for had I gone with a theoretical high school diploma and then college. Would I still be able to work had I not been doing so much that was very physically demanding for such a long time?

I don't have the answers to those things, but what I do know is that I have no regrets! I look back at those years of physically demanding education and jobs and see it as one hell of a good life experience to have! I also got one of the most important things in my life thanks to choosing the path that I chose. Had I not attended the high school that I did, and done some farm work afterwards, I would not have had my cat Nisse now as he was born on one of the farms where I worked some! Nisse is extremely important to me, he's always there for me when I need him, purring, headbonking and loving and he senses how I'm doing and stays even closer to me when I'm having a rough day. Without Nisse, I wouldn't be where I am today! 

Now I should try to catch some sleep, tomorrow is a day where I am going to celebrate, celebrate ten years since my graduation, celebrate where I am today and celebrate life! I shall also wear my graduation hat with pride! And in the evening my parents and I will go to attend a traditional spring celebration that happens each year on April 30th, a choir, preferably all men's choir sing special songs welcoming spring and sending off winter, and then there will be fireworks after the songs and spring speeches. 

There's usually also a big bonfire on those spring celebrations. I'm no fan of big fires so I stay far away from those though, I'm actually afraid of fires bigger than just say, a fireplace or so. A fair bit of wildlife may be hiding in the piles and being unable to get out when the fire is lit, and that really haunts me when it comes to bonfires like that. I just don't like it! 

I prefer just songs and fireworks! 

The physical effects of poor accessibility

As someone living with a disability of any kind, the world outside of our own home can be pretty hostile and inaccessible at times as it's a world made for and by people who are at full physical capability.

I mentioned yesterday how I battled with the laundry room door to just be a normal adult and do some laundry, well, today I'm paying the ultimate price for my little attempt to be normal!

I did not sleep well last night due to pain in my neck and pain down my right arm from pulling that door open, and today I've been battling a spinal headache coming from the base of my skull, caused by the door triggering my neck issues. Neck issues that has been behaving somewhat decently for the past month or so. Guess I'm back to square one with my neck now eh?

Now over 24 hours after last battling the laundry room door, I'm still in a lot of pain down my right arm, my neck is causing utter hell and the headache it's causing needs a one way ticket to the edge of the known universe and beyond! 

I don't have time for physical setbacks like this! I have a concert to attend tomorrow evening and you bet that I'm going to enjoy every moment of it! I have an expo to go to on Friday in town, an expo I've been looking forwards to since the last one two years ago! And on Saturday I'm going out of town all day to meet my relatively local friends who also live with Ehlers Danlos Syndrome. 

Looking back, I kinda wish I wasn't so damn stubborn all the time! I should have just called for help with that door yesterday, or done the laundry another day. But why should I? Why should I need to adapt for anyone else but myself? Why should MY freedom have to suffer because the local landlord company are too lazy and dumb to realize that their facilities aren't accessible before anyone points it out to them? I mean seriously, even the maintenance people working in the neighborhood walk through that door on a regular basis to fix something, they should have noticed that "oh shit, we need to do something about this door, it's almost impossible to open even without carrying a load of laundry!" and then they should have just fixed it, and fixing it would benefit everyone using the facility, not just me and others with a disability.
I'm not the only person in the neighborhood who's disabled in any way, I may be the youngest but I'm definitely not the only! And when even fully able bodied neighbors struggle with that door, it should have been obvious long ago that it's inaccessible to those who are disabled and/or elderly. 

Again, I'm now paying the price for trying to be a normal citizen doing normal things, in a world where people like me are expected to point and ask for help all the time instead of having a world that's more adapted and accessible for everyone living in it! 

Accessibility that helps the disabled doesn't just make this world a friendlier place for people with disabilities, it also makes life a lot easier for those who don't have a disability. 

A door opener makes it easier for anyone to open a door, especially if you're carrying something.

An elevator makes it easier for anyone who's coming with luggage, children or maybe a temporary injury.

A slight increase ramp next to or instead of stairs makes it easier for anyone coming with luggage or children.

Little or no height difference between a train and platform makes it easier and safer for everyone to board and get off the train. 

Those are just some small things that makes life a lot easier for the disabled, but also greatly benefits everyone else!

We're all part of this world and no one should be left out!


And below we have it: The door to hell, I mean, the laundry facility of my neighborhood! Note how high up the key badge reader sits to the left of the door? The narrow area in front of the door? The edges down from said platform? And on top of it, not very visible on the picture, there's a slight angle of the asphalt leading up to the concrete! And yes, someone has made a mess with laundry detergent outside the door.

Coming to terms with your situation

No matter if you are newly diagnosed with your condition or if you have known about your diagnose throughout most of your life, there will be times where you face difficulties.
The difficulties can be anything from an injury needing to heal, your condition having progressed so you're forced to make big changes to continue feeling well, or maybe you're facing a major surgery.

Whatever obstacle you're facing, always hold your head up high, don't let difficulties drag you down and make you depressed!

An injury will heal, it just needs its time to do so, and the time needed may be much longer if you live with a connective tissue disorder. Never feel ashamed of showing your condition out in the public! If your condition has progressed so to the level where your mobility is compromised, there's absolutely nothing wrong with wearing visible joint bracing, using a cane, crutches or walker even if you're young, or use a wheelchair even though you are physically able to put one foot in front of the other! Let people stare if they wish, it's not your problem! If anyone asks you, see it as an opportunity to educate and spread awareness about your condition, who knows, maybe the person asking is just curious? Or maybe he or she also lives with an invisible illness or know someone who does.

It can be difficult to accept needing to use aid to get around, a cane or walker "that's for old people!" and wheelchairs have a bad reputation which it doesn't deserve. While yes, if you get a standard hospital wheelchair, it may be more pain than gain from it, but if you get a wheelchair that's been custom built for you, to fit your measurements and needs, there's no stopping you unless you approach stairs and there's no elevator or the elevator is broken! Many wheelchair manufacturers also offer different color options, fabric options and wheel and caster options so you can get the nicest ride in town if you wish!

As for a cane, crutches or walker, not only old people use them! Young people do as well, and there's so much more than the standard grey aluminum kinds out there. Get a nice cane or set of crutches and if need be, pimp the hell out of it to make it represent who YOU are!

If you need to wear bracing on your joints to support and protect, there's a lot you can do to make your braces look nicer, or opt for bracing that both looks nice and has the function that you require from it. The opportunities are endless really

Do whatever it takes for YOU to be as mobile as possible and protect your joints and yourself from injury! There's no right or wrong when it comes to choosing whether or not to use a medical, as long as you use your equipment right and for the right reason it can truly enhance your ability, but there's nothing wrong with choosing to not use a device either. Each to their own as I always say.

If you're facing a major surgery, sometimes you have a choice to delay or avoid, sometimes you don't. When it comes to surgery, a planned surgery is always better than having to have the same things done as an emergency. With a planned surgery you can prepare for it both mentally and physically which may give you a more smooth recovery.

Surgery is some pretty scary stuff, but don't let your fear stop you from having it if the surgery means you'll get a higher quality of life, or even have your life saved by it! Just try other options first if possible, surgery should be considered a kind of last resort due to the risks.

If your condition has left you unable to work, try to find other things to fill your days with. Maybe you're good at crafting things or play an instrument? Find your talent and use it! Getting laid off from work due to poor health isn't the end of the world, and being young and disabled doesn't mean you'll be stuck between four walls all the time. There are so much more to life if you just choose to see the opportunities rather than locking yourself up in a cocoon of self pity.

Whatever your obstacle may be, always remember to hold your head high, be proud of who you are and what you have accomplished, face things with a positive attitude, don't let negativity take over and remember to LAUGH!