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! 

What a week and weekend!

I don't normally like to refer to utensils when talking about how I'm feeling or doing, I may use the word sometimes but it really isn't often, I prefer to refer myself as Chronically Awesome.
Anyways, I've been doing really well for about a week now!
I've managed to do so much more than expected and I'm feeling much more energized than my normal, something I'm both very happy about, and at the same time slightly confused about- like what the hell has happened?

I was planning to rest up a lot last week due to having a busy second half of the week, but instead of resting I ended up going to town, doing laundry, driving more than usual despite my legs no longer agreeing with the accelerator well. I went to a concert on Thursday, on Friday I went into town AGAIN and that was after attending the local expo which was NOT accessible at all as it was held on an indoor football field with artificial grass and my municipality didn't want to spend about 10000USD on making the venue accessible for all by putting wooden boards on the "grass" so I had to wheel around on artificial grass with 4 inches of rubber pellets under it, it was far worse to get around on than real grass or gravel!  And yesterday I attended my "coffee date" with my fellow nearby EDSers, at a venue out of town, I drove both there and back home, a round trip of about 100 miles! All in all, I have driven 200 miles or so in one week, that's close to 150 miles more than I've been driving in an average month since about August last year!

Am I feeling it? Oh yes I am! I feel like I've been hit by several trains! I'm in a crapload of pain from overdoing it all week, but at the same time, I like to take full advantage of "good periods" like this where I actually have the utensils or energy to do more than usual, even with knowing I'll pay dearly for it later- I wouldn't be at all surprised if most of May will be spent in bed.

I have to admit, I am pretty bummed about the local expo not putting the wooden boards onto the artificial grass as it's supposed to be an expo for all locals to feel welcome to. Now we aren't a whole lot of wheelchair users in my town, and even fewer who are independent wheelchair users like myself, but even the walking visitors found the surface difficult to get around on. For me and others in wheelchairs it was close to impossible and I did actually have to ask mum to help me a bit too, especially since my right shoulder was (and still is) wonky from the laundry room door on Tuesday.
I understand the cost is an issue when it comes to putting wooden boards on a full sized football (soccer) field, but at the same time, us living with a disability should also be able to go to such a venue and without the surface being accessible, it's actually a case of discrimination and I could if wanting to be a bitch, file a formal complaint about it because it wasn't accessible when it was a public event meant for everyone.
Even with mum helping to push me some, and me "bunny hopping" most of the time (so grateful I'm good at wheelies and balancing!) it was very hard work to get around, both mum and I were sweaty when we left the expo. Obviously I'm battling arm pain and tiredness from that too now, along with the chronic pain and the shoulder injury from Tuesday.

At least my dear patch is keeping my pain at a manageable level without having to take any extra painkillers. I could do with more painkillers now, but I'm managing without, so I don't take any extra. I don't like taking anything, so the less I'm on, the happier I am really. I'd ditch the patch too if I had any quality of life without it, but without it, the pain is just too much to handle so I can't function at all, and I have high pain tolerance, can literally break a bone and barely flinch, so go figure.


The weekend has been absolutely stunning with summer temperatures, so I've been enjoying the weather as much as possible, having some ice cream in the sun or BBQ dinner outside and such.
Yesterday while at the EDS "coffee date" with my friends, I saw trees sprouting that aren't supposed to turn green until mid to late May, so we are indeed far ahead of time here at the moment!
There was also a big sporting event at the park where I met my friends yesterday, so I'm so grateful that I have my handicap parking permit! When me and my parents arrived the place, there was only ONE empty parking space left in the entire parking lot, and it was a handicap spot and I'm allowed to use it, so I did! Had there been other spaces available, I would have used a regular spot and just used my parking permit anyways as it also gives the holder of the permit free parking on all the city owned parking lots, regardless if you park on a handicap spot or not. But yeah, having the handicap parking permit is really really awesome! Especially when you face a situation like yesterday with unusually many cars in the same area, or visit a big mall or something with big parking lots. It would have been pretty devastating for me to have to park further away from the cafe I was going to, any extra distance can take a toll on me, and seeing how my parents were going to a venue across the street from that cafe, it would have been highly inconvenient if they had been forced to drop me off and then drive somewhere else to park the car.

I do however try to avoid occupying the handicap parking spots if possible, knowing someone may come with a van or having a wheelchair robot in the trunk that really requires the extra space of a handicap spot. But I am allowed to park in the handicap spots, and I do when I come to a place where it is the most convenient for me to do so. On Friday though in town, I used a regular spot as I found one near the entrance to the mall I went to, and all the handicap spots were already taken anyways. Was a really busy day at the mall on Friday because a new shop opened.

Anyways, this is turning into a pretty long post, and I need to sleep soon, so I shall round this off with a couple of pictures from yesterday!

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.

It's a harsh world out there!

Despite living with a disabling, debilitating condition, I do my best to be independent in my life! I don't like asking for help if I can avoid to and I try to find ways to gain independence back where I feel my condition has intruded too much.
Tonight I decided that I shall do some laundry in the neighborhood laundry room as I don't have a washing machine in my apartment- my bathroom isn't big enough to have one. So I went to the laundry room and was instantly reminded of why I normally don't use the facility and have mum help me with most of my laundry! THE DOOR! The door into the facility is extremely heavy to both pull and push open, and you need to use a key badge to unlock it and the reader for the badge is very high up, especially if you're in a wheelchair of you're short. I'm tall enough when standing, but in my wheelchair I truly have to reach to unlock the door. Then comes the fun part of actually pulling the door open, preferably without dislocating every bone in your arm, something that may or may not happen in people living with Ehlers Danlos Syndrome or other disorders of the connective tissue that causes laxity of the ligaments.
I managed to get through the door without dislocating something, but I felt it was near both when I went to book the machines and when I went to load them. By the time I was putting my wash into the tumble dryer I decided it was better to just stay in the room until I was done, rather than battling the door a fourth time in just a few hours, by this time I was having bad neck pain, my right shoulder, elbow and hand felt like I had been trying to pull a dead elephant through the neighborhood. My back was no fun either but still figured I'd be less uncomfortable just sitting in my wheelchair waiting for the laundry to dry, than battling the door again.

My laundry was done about 1.5 hours ago, and I finally got back home, hopefully in one piece but in a lot of pain. Needless to say I have filed a complaint with the landlord regarding that door, kindly notifying them that I can not use the facility safely and that I'm not the only one struggling with how heavy that door is to open. I mean seriously, it should be a No Shit Sherlock to have a door to a public neighborhood facility accessible to anyone living in the neighborhood! And such a place as a laundry room is THE place where you kinda never go without carrying a load of things in or out said door. I've already been in touch with other tenants in the neighborhood who aren't disabled and they also struggle with that door to the laundry rooms, so it's not just me being a moaning bitch because of my condition, it IS a problem area!

I'm hoping the pain in my right side will ease in a few hours, but as it feels now I may have to resort to some extra painkillers as I think some muscles may have been strained or even sprained around the joints from opening the door.

Should the laundry room get an accessible door, I'd use the facility regularly as I prefer to wash my own laundry and have it done my way with tumble drying and the lush softness it provides! And it's also something that makes me feel like an adult and makes me feel independent! At this age I should be doing all those things on my own, and I know how to do them, there's just that physical obstacle to overcome before I'll be there!

On another note, I went to neighbor town this afternoon because I just felt like going out for a while and drive a bit, plus having a couple of things I needed to look for in a shop in town. As ever so often when I'm driving alone, I thank my lucky star that I have the handicap parking permit! I really wouldn't be out much if I didn't have it! I've needed to use it every time I've been out on my own lately as there's been so much people in the parking lots I've been parking at, and while I am able to self propel much longer than I'm able to walk, it's not safe to roll in a wheelchair behind parked cars in a busy parking lot!

Now I just hope I can manage to somehow get a car that's better for me to drive than the current stick shift that I'm driving. I've been talking with dad a lot about it lately as he's not getting younger and I'm not getting better. It would benefit both of us to have a car with automatic gears and cruise control, or even hand controls as his legs are beginning to trouble him from many years of being on blood pressure medications. I could of course apply for government funding for a handicap car with hand controls, or raise funds more actively through gofundme, but at the same time I feel, why do I need to have my own car when I live in the same neighborhood as my parents and they use the RV when going out over weekends and vacations these days? The regular car is always available these days! It would just be a waste of money to have three cars in one family, and it would save money both for me and my parents if we had one shared regular car that I can pay some of the tax and insurance on too. I don't know how it works with the tax and insurance costs if you get a car funded by the government due to your disability, need to check that out. When living on government disability benefits, you do have to think twice pretty often, you definitely don't have the same funds that you'd have if you were able to have a full time job!

I stayed in town for a couple of hours and went to some different shops, partly the shops I had errands to, and partly just looking around for the heck of it. Found the things I was looking for and then went to a cafe where they had home made ice cream! Seeing it was such a lovely day today, I've been outside in 3/4 length leggings and short sleeve or 3/4 sleeve all day until I got back from laundry! I just had to have ice cream today! Rocky road, chocolate and stracciatella were the flavors I tried today and it was divine! I'm so going to have ice cream in that cafe again next time I go into town!


I'll honestly have to say, it's even worth driving 15 miles each way JUST for this ice cream! The Rocky Road and Chocolate flavors were especially good! I guess you could say that I have a weakness for chocolate flavors!

Enjoying spring!

Despite me being awfully allergic to most types of pollen outside, I'm doing my best to enjoy the absolutely beautiful spring weather we're currently having in my area.
We're more or less having a heat wave and the trees outside are literally exploding! To be honest, I should probably sit in an isolated tent with my own air supply, but no, I ain't going to do that! I shall be, and am outside! I have to medicate for it a lot of course, I'm currently taking oral steroids, oral antihistamines, allergy eye drops and steroid nasal spray just to stay on top of my symptoms somewhat, I even had to increase my oral steroids yesterday even though I was supposed to start tapering down, but tapering down is just a no go at the moment when the birch pollen is peaking at High+ levels outside! I'll simply have to live with the effects of steroids for a bit longer.

Yesterday my parents and I went outside to have lunch out in the green, starting the BBQ season because of the nice weather. Today we went out to a nearby old castle ruin for some afternoon coffee outside and photographing!

I dare say I'm struggling to type this now as the trip today really make my hands hurt awfully and I was extremely fatigued when I came home, was unable to move at all for a couple of hours, it was rough terrain for me to get around so my hands and wrists took quite the beating, at the same time I wasn't feeling well enough to walk that much, so yeah, Ehlers Danlos Syndrome and pretty severe pollen allergy at the same time can be quite a bitch! Ring splints on left hand minus little finger, and a wrist brace on my right wrist, just to be able to type at all at the moment, plus resting up in bed for the fatigue. Could do with some extra painkillers too for my hands, but I'm not going to, I'm just taking it easy instead, trying to limit my typing tonight at least on the computer. Just finished watching a movie, Brave, and may watch another movie before sleep, or even try to make a YouTube video for once, I just don't know what I'd say if I was to make a YouTube video tonight so I'm guessing I'll just watch another movie.

Anyways, my hands are hurting too much for typing on computer now, so I shall round this post off with some pictures from the trip today!

Managing pain, my journey this far.

As someone living with Ehlers Danlos Syndrome and having pain as one of the worst symptoms of the syndrome, I had to make the decision about medicine about three years ago now. At that time when I began taking medicine daily or close to daily, I was still working full time at a physically demanding job. While I've been in some level of pain all my life, it wasn't until 2010-2011 that the pain level got to the point where it was affecting my everyday life negatively. Before that time, I had only taken the occasional paracetamol or ibuprofen every once in a while, unless I had an injury or flare of something that required prescription medicines.
Anyways, in early 2011 I got to the point where I could no longer manage at work without painkillers, it was really a choice between painkillers and being able to work, or no painkillers and resigning there and then. Seeing how I loved my job, I went with the painkillers and lasted at work for a few more months before I was laid off due to my health situation in summer of 2011.
By the time I got laid off from work, my pain had already reached the level where it affected my whole life but I was able to workout some with painkillers. I did however have periods where I did not take any painkillers, because I could manage without at times where the pain wasn't as intense. Then in late 2011 I also had to face going up in strength of painkillers because the old painkillers no longer worked, or maybe they always worked poorly, I'm not sure there as painkillers tends to work very oddly in EDS patients.

2012 came and I got off my stronger painkiller and even managed without any medicine for a while before the pain limited me too much again and I got back on painkillers, though a weaker kind that did nothing at all for me, so I was switched to stronger medicine again which worked and I took that as needed only for several months before having a long acting medicine added. I took the combination of long acting and short acting for over 6 months, with varying results, some days I got good effect from the long acting, other days I was wondering if I had even taken it. By June last year after too much fluctuations in the effect of my regime, I was put back on the transdermal patch that I had for a while in late 2011 to early 2012.
Transdermal patches are no child play, it's pretty damn potent stuff and if used wrong, the substance can kill you. But if used right, it's an excellent pain management with very stable effect!
I've now been on the transdermal patch continuously since June last year, and while I'm far from pain free on it, my pain is brought down to a level where I can live with it and function somewhat as long as I pace myself and rest a lot. I remain on the same dose still, which is also the same dose I was on when I was first put on the patch in 2011. I'm very happy that I'm able to stay on the same dosage, as that medicine generally have you build up tolerance so you need to increase the dose regularly on it.
I am resistant to a lot of painkillers, but when I find something that works for me, it works for a long time and at the same dose for a long time.

As much as I hate being on any substance continuously, I choose to still medicate as it does improve my quality of life, and in my case, completely without side effects! I do wish I could manage without any painkillers, but in my life, taking painkillers is the lesser of two evils. And having my transdermal patch enables me to drive, it makes me physically able to be up more, go places, be social with friends more, I'm able to think more clearly as less pain means less brainfog.

I do actually have a high tolerance to pain though. Having been in some level of pain all my life kinda does that. I can sprain something and just keep going, or even break a bone and barely say ouch. The big issue with EDS pain is that it's so wide spread, along with being intense and the intensity may fluctuate as well, and then add injuries to that like sprains, subluxations and dislocations. A broken bone is just pain in one place or small area, now imagine having that pain in your entire body, all the time, plus the injuries.

I truly take my invisible hat off to those who are able to live with severe pain without taking painkillers. I wish I was able to do that too and have tried several times, but always end up stuck in bed from the pain so I have to start medicate again! The human body is truly a remarkable collection of atoms. Everyone reacts to pain differently and manage differently. Even if two people have the same pain, one may do well without medicine and the other may have to take medicine, depending on how their body reacts to the pain signals.
"Giving in" and taking painkillers to manage is not a sign of weakness though, you just do what you need to do to regain some function, Only idiots would take painkillers for fun!

As for addiction, dependence and tolerance. I am personally not addicted to anything, I do not get withdrawal symptoms if I quit my medicine, the only thing that happens is that my chronic pain creeps back up to the level where it would be had I not been on my medicine, and I would be having more pain flares. Am I dependent? No, not to a substance, I only depend on having a working pain management and it doesn't matter what substance it is as long as it does the job. Tolerance, well as I mentioned above, I am resistant to many painkillers, and I tolerate horse doses of mixtures of very potent painkillers and severe pain flares like post op pain is very difficult to bring down, but when I'm on something that does work for me, I'm able to stay on a relatively low dose and stay on that dose for a long time without needing an increase.

Again, I wish I could manage my life medicine free, but due to how foggy my brain gets from too much pain, and how limited my physical function gets (and is even on medicine) I sadly see a future with painkillers. Maybe I'll have the opportunity to try something else one day, non medical like for example a spinal cord stimulator, but seeing how EDS weakens connective tissue, and the dura around the spinal cord is connective tissue, we aren't really supposed to mess around with the dura if it can be avoided, so I really don't know. Another downside of having an implanted device is that it prevents you from having an MRI and I may need a fair few more of those in my life, and prefer that rather than a CT scan due to the radiation of a CT. It's something I'll discuss with a pain management doctor if I get to see one someday though. I was referred to see one, but seeing I don't have cancer, the pain management clinic my doctor tried to send me to just sent the referral back *sigh*

I do use alternative methods as well, like breathing through the worst pain if I can, relaxing, using TENS if it's a small area being nasty and acupressure cushions. None of the alternative ways works good enough though, it just works as a compliment to my medical pain management, and may make me able to get through a flare without taking any extra painkillers.

It's that time of the year again!

Well, it's spring and as always in spring, trees will turn green and attempt to reproduce using their "biological warfare" as I like to call it, namely Pollen! The great fear for us who suffer from seasonal hayfever.
I've been allergic to pollen since my early teens, and for each year it basically just gets worse. Despite my best efforts to keep my symptoms at a manageable level with antihistamines and local steroids, I have since 2010 ended up with needing oral steroids or long acting steroid injections to get back in control of the situation.
Now it's that time of the year again, my pollen issues are at its peak despite taking both Desloratadin tablets and Mometason nasal spray and inhaling Ventoline when needed. I'm now on this season's round of Betamethasone tablets too! As much as I dislike taking cortisone type medicines due to the possible risks with it, it is indeed a necessary evil when it comes to this allergy, and the benefits from taking it greatly outweighs the risks.
See, cortisone isn't good to take if you have a connective tissue disorder that's already weakening your connective tissue, as cortisone may also weaken the tissue. But I'm just on a low dose for maybe two weeks, so it should be fine. In the past years when I've taken cortisone of any kind for my allergy, I have not noticed a negative impact on my joints at least. But the general recommendation for connective tissue disorders like Ehlers Danlos Syndrome or Marfan etc. is to avoid steroids as much as possible.

Another thing that I do get with cortisone tablets is secondary diabetes. My blood glucose gets elevated and even goes above the diabetes threshold at times. It's also a common side effect of cortisone. But again, I'm only taking it for such a short time, so to me, the discomfort of an elevated blood glucose is a pretty cheap price to pay for feeling so much better allergy wise. I do however keep a blood glucose monitor at home, I've had it for years due to fluctuating glucose levels even when I'm not taking cortisone. But when I am on cortisone type medicine, I test my levels regularly to make sure I don't go dangerously high all of a sudden.
Today I've already been kinda high-ish and my levels are elevated compared to my normal, but not alarmingly high. Do I feel that my levels are elevated? Why yes, I do, but it's not out of hand. I get higher levels on Prednisone or Prednisolone than I do on Betamethasone, so I'm glad to be able to take Betamethasone which along with not giving me as high levels, also doesn't give me that "steroid restlessness" and insomnia that cortisone medicines may cause.

Hoping to not need the Betamethasone for very long this year, but I am expecting a couple of weeks because that's the norm for me. Also hoping my joints will behave this season as well. My left shoulder is clonking enough and subluxing even when I'm not taking any medicines that's affecting the tissue.

On a completely different note, my wheelchair had a flat tire yesterday, so now I've experienced that too! Sometime has to be the first for that as well. Fortunately I had a spare inner tube at home so dad and I could change the inner tube of the tire. Didn't find a leak immediately on the old inner tube, but the tube did lose a lot of air within just hours yesterday so it was best to change it. Old tube still has some air in it and will see when I wake up if it has leaked more or not, and dad may check it more for leaks too. We're not sure if it's the rubber or actual valve that's broken, just that it is something that makes the air seep out at a slow pace.
And I really need to do some maintenance of my caster wheels too! Should do that tomorrow.

Busy day

It's been a really busy day today! Had to get up early (for being me) to take my cat to the veterinary, it was time for the annual vaccination. After the veterinary visit, I just dropped off my cat at home and went out on an errand, then mum and I went to the café before running another errand. Took a more scenic route home from my errands, a detour of a few miles. I had already been on my feet too much for being me, and I was driving the family stick shift car, obviously an ouch moment, but so worth it in spring time!
Came to my parents place, tried to rest a bit but ended up helping dad with Movie Maker instead, had dinner and helped dad some more before going home. Napped some when I got home, then I went down to my basement storage room to look for something which meant more walking and more stairs and more standing, and on top of it, lifting and pulling! Did not find what I was looking for, but I did find my high school graduation hat that I searched for high and low last year! Now in the end of April it will be 10 years since my graduation, so it sure was the right moment to find my hat!
When I was about to go upstairs again from the basement, my phone rang and it was mum who asked me if I wanted to go out to have pizza tonight, or if I wanted my them to bring me something from the pizzeria. Said and done, I went with my parents to the pizzeria.

I got back home from the pizzeria at roughly 22:00, after having been out and about for the most part of 12 hours, with very little rest! What I did when I got home? Started to search in my walk in closet for the item I couldn't find in the basement! I had to admit defeat though, my body is too worn out for the day.

Needless to say, I'm in quite a bit of pain at the moment, and I'm expecting it to get worse overnight. My back, hips and ankles are already a nasty piece of work... Knees aren't as bad as they could have been, thanks to wearing my rigid, hinged knee braces. We're talking kinda exoskeleton kind of knee braces!

Now it is pretty likely that I'll need to spend the next few days mostly in bed, and I guess now most people will see why I am not able to take a job and have to depend on disability, at least for the time being... I'm hoping to not depend on disability for the rest of my life :/

But seriously, I don't care! I got a lot done today!

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!

Some projects and general

There's quite a bit going on in my life at the moment, and I'm really feeling excited about it too! 

Feels amazing to actually do more things again and actually feel as relatively good as I do right now. I haven't been feeling this well for probably a couple of years! 

I know I'm still recovering from my surgery in September, but even with it only being little over 6 months, I feel so much better, and definitely a lot better now than when my body was being thrown off balance by all the additional hormones I was taking to try to control the issues I had with bleeding and cramps. 

I feel... Alive! 

The Ehlers Danlos will of course always be there and wreck havoc with my body, but in a way "just" the shit that EDS throws at me as far as pain and fatigue goes is so much easier to handle now when there's at least one problem less to deal with on a daily basis. 

Like I mentioned above, there's a lot going on in my life at the moment. I'm pretty busy and loving it! I won't however reveal what is keeping me busy ;)

The only things I can reveal is that I'm going to push for an accessible train station in my town, a station currently missing an elevator so it's not accessible at all if you use a manual wheelchair independently- especially for those who can't do like me and just walk past an obstacle, and I have monthly meet ups with some awesome fellow EDS warriors out of town and it's not unlikely we will be doing some more local awareness things too. 

I do other things too, but I can't say more now. 

I just wanted to share that I'm feeling (for being me) pretty damn good at the moment! 

My best advice on dealing with insomnia

Having battled insomnia most of my life, I've had plenty of time to find ways to fall asleep at times where I wouldn't be able to just fall asleep like most people do.

For me personally, the so called sleep hygiene you read about in the news every now and then does not work at all! All it does for me is to give me a place in the Olympic toss and turn team.

I have however found ways that does make me fall asleep most nights, and funnily enough, it involves a lot of the things sleep hygiene tells you to NOT do! 

Things that makes me able to fall asleep includes: 

- Watching TV

- Streaming a movie on my laptop right next to bed

- Sitting in bed with laptop on my lap

- Prescription sleep medicines

- App on phone

I do tend to avoid the prescription medicines, for the most part I just stay up until I feel tired enough to maybe fall asleep and then I start streaming a movie on my laptop, or I run this absolutely fabulous smartphone app called Relax and Sleep well which you can find here: http://www.relaxandsleepwell.com/ 

The app is by far my best advice to those of you out there who struggle with insomnia! 

That being said, I'm not always asleep by the time the app finishes even in the paid version which is 48 minutes long or so, but even if I'm still awake at that time, I'll be relaxed so my body is resting even without sleep. Most of the time I do fall asleep with the app though, even on the free 27 minute version, but I personally prefer the longer version even with it being a tad bit on the pricey side for an app!

I tend to fall asleep better with some sound around me, hence the movie or app, I am normally very sound sensitive but that also means I hear just about every sound in the building. A movie of my choice or listening to Relax and Sleep Well makes any noises in the building less disturbing. 

I have tried other sleep apps with relaxing sounds and white noise, but no other app has been working as well as Relax and Sleep Well, and other apps tends to use up more battery too.

I am not getting paid by anyone to write this, I'm writing this purely based on my own experiences with using the app for the past three years or more, and a life of insomnia battles. 

But again, it doesn't always work on me. Sometimes I'm simply in too much pain to fall asleep, or my brain is just too full of thoughts to relax. The app is just a great help for the moments where it's "just" insomnia and I'm tired enough. 

Thoughts...

When you're living with a chronic condition and spending most of your time at home, you do tend to have a lot of time at your hands to just think about things. Some thoughts can be dreamy, some are brilliant, other thoughts slightly bitter- though those aren't many. 

Often I just think about how pretty damn good my life is!

As much as it sucks to live with a chronic condition that may or may not progressively worsen, I can honestly say that I'm not bitter about my situation, despite waking up each day feeling like shit most of the time and having to pace myself all the time to avoid the worst flares. 

Like with so many other things, I've turned my condition into something positive instead. 

Now how can anyone turn a chronic condition into something positive you may wonder?

It's actually not that hard, you just have to find the positives in your life and make sure it outweighs the bad things. 

The positives for me in my battle against chronic illness, is the people I've gotten to know thanks to living with this crap! 

Thanks to a genetic mutation that I wouldn't even wish upon my worst enemy, I've gotten to know some of the most awesome people walking this planet! Friends I wouldn't trade for anything! Friends I'd cross oceans for. Friends whom I most likely wouldn't have gotten to know had I not been fighting this battle against Ehlers Danlos Syndrome! 

In utopia, both my friends and I would know each other, without either of us being chronically ill. But seeing how this isn't utopia and we are battling a chronic condition, I'm just so grateful to have all those people in my life!

And don't assume we just talk about illnesses! We talk about everything between heaven and earth and beyond to the edge of the universe and back! 

I have the best family and cat you can imagine, and the most awesome friends ever! What more can a human being ask for really?

There are some things I'd like to change in my life, situations the EDS and its effects on my body has put me in. But I am working on making those changes and I'm positive that I shall succeed with it too! Determination can get you really far!

Of course, there are days where the EDS is just being pure evil and the pain is so bad I cry and just want to scream, and I do spend many nights awake, not seldom because of pain. But I ALWAYS remember the positive things in my life, and that gives me the strength to fight and to come back again, and the strength to handle a life with chronic pain.

On top of everything else, I've learned to appreciate life in a different way, including appreciating even the small things that most people take for granted. 

In all honestly, it's really difficult to write this post, I guess there's always someone out there who'll interpret it wrong and think I enjoy being chronically ill. But for those who might think that. No, I do NOT enjoy it, not for a second! I've just decided to have a generally positive view on life, and wanting all my friends who read this post to know how much I appreciate that our paths met, even though I wish the reason of our paths meeting having been a better reason than a chronic condition. 

To all my friends: I'm always here for you and all ears! And I will cross oceans for you should the need arise! 

The Desolation Of Smaug

So, I finally got to see part two in The Hobbit trilogy, The Desolation Of Smaug.
I'll have to admit that I really enjoyed the movie, it's incredibly well made just like all other movies Peter Jackson has made based on books by Tolkien, and all while it's a movie which has its own story just based off the book, I do think the movie does follow the story of the book pretty well. It has the essentials in it even though, as always, there are also essential parts missing. I don't know if the extended version of the movie(s) would be any different as I've not seen them, but I have a feeling that it may cover more, the extended version of Lord Of The Rings trilogy does at least. I'll have to watch the extended version of The Hobbit trilogy in the future, probably when the third movie is out as well so I can watch the entire trilogy in one day.

I don't want to write any spoilers here because I know there's probably quite many out there who are like me- people who have been waiting to watch the movie at home instead of running of to the nearest movie theater the day the movie came.
I personally much prefer watching a movie at home where there's no people talking around, no sounds of candy bags and no people in front of you or in the same row, trying to go use the bathroom in mid movie. So, in other words, it's been a long time since I last went to a movie theater, three to four years if I'm not mistaken.

There are some things in the movie that bothers me slightly, but I also know it's just a movie based off the book, and it has to look good all while each movie has to be kept within a time frame where people can actually watch the entire movie in one sitting. So I can see why they've made it the way they did, even though I don't agree with all of it. It's mainly the time IN the movie that bothers me, those of us watching the movie after reading the book knows they spend more time in the book than in the movie, the movie is very hurried in a sense for those who have read the book.

I'm looking forward to seeing all the extended versions one day. I often find the extended version to be better than the regular version when I watch a movie, many of the scenes they've cut out in the regular version are often either very funny or essential to the story or both, and I'm sure that will be the case with The Hobbit trilogy as well.

Extra thumbs up for the movie music! The theme song for The Desolation Of Smaug is really nice, and I also like the theme song for There And Back Again (and Lord Of The Rings trilogy for that matter). Good music in a movie really makes a big difference in the overall movie experience.