Feels like I haven't written anything here since the dawn of time, think it's been about a year or so!
Anyways, 2016 was a very rough year for me, and this far 2017 has not been much of an improvement if any.
I have been experiencing a decline in my condition for a while now, along with being under a lot of stress, so I'm basically bedridden and burnt out with very little energy to do anything. Pretty much isolated myself from most things and most people to cope at all.
My neck has been getting worse lately, as have my back. Last week I saw a doctor about it at the local clinic and I'm finally going to be referred to see a neurologist and urologist after four years of mentioning I need to have my neck, spine and bladder further evaluated because I can not live like this! The doctor I saw is also going to talk with my regular doctor and the boss of the clinic regarding sending me for a new MRI as I'm worse off now than I was in 2013 when I had one last time, that along with the fact no doctor trying to help me would be helped by only having access to images that are so old!
I'm also looking into seeking help abroad as there's absolutely no competence on CCI and AAI in Sweden, and that is what I suspect that I have. Based on some finds on my 2013 MRI and my symptoms I could have both CCI and AAI, I am currently in an Aspen Vista neck brace a lot of the time to keep my head in a neutral position even when I sleep, and when I'm up it's to help holding my head up because it doesn't take long before my head feels like a pumpkin on a toothpick. I may also have tethered cord syndrome in my lower back, and in the case of occult tethered cord which is there but not visible on images, there's also no competence for it in Sweden. If you're not familiar with CCI and AAI, this link is a good start as it explains it pretty well.
I'm basically facing the possibility of needing at least a C0-C1 fusion, maybe more, and if that's the case it can not be done in Sweden, I'd have to go to Spain or USA which would not be funded by the national healthcare system in Sweden, that basically means I have to start a fundraiser to put my life in kind strangers hands, to have a surgery that could either save my life, or end it. There's no getting around it, surgery that close to the brain and most upper part of the spinal cord is very very dangerous if something goes wrong either during surgery, or after. But it could also be just as bad to not have it done if it needs to be done as untreated CCI or AAI can cause permanent nerve damage, paralysis or stroke.
I'm also facing the possibility of needing spine surgery to release the tethered cord if it is confirmed, and maybe fuse some levels due to disc issues that causes a lot of pain.
Am I terrified? Heck yes! I'm as afraid about this as I am around the current political situation in USA... A situation that also affects me directly as I do not feel safe going to USA at this time even though that's where the best doctors are, doctors I'd feel safer with as they have more experience with these things.
Considering I'm so exhausted and in such a bad condition, I really don't know how I am supposed to find the energy to manage a fundraiser and I don't know anyone who could really help me with it, or maybe there is one I'd trust enough. But still. I do not know how to manage...
Monday, February 13, 2017
Tuesday, January 19, 2016
A little bit of this and that on a not so good night...
I should have slept hours ago, it's just past 5am and I am tired despite having had 3 cups of coffee during the board meeting I attended in the evening. But my mind just can't relax... Too many thoughts going through my head.
I haven't been writing for about a month now, simply been too busy and/or too tired. Been having a fair bit of social happenings over the holidays, along with my Ehlers-Danlos Syndrome flaring some with extra pain and fatigue.
At least something is finally happening wheelchair wise, I'm waiting for an appointment with the wheelchair center to try out a new manual wheelchair at last, after telling the occupational therapist for over a year that I do not sit well in my current wheelchair and need something more lightweight and active as I'm a very active and independent wheelchair user.
I just hope I'll get that appointment soon, and that it won't take long to get the new wheelchair once it's been ordered...
I wish I could get to choose color freely on the new wheelchair but unfortunately it doesn't work that way here, despite it not being an additional cost at all, it's just the region wanting to be boring and only letting people have white, black or graphite on the wheelchair model I think I'll go with: Quickie Helium which is known as Q7 in USA. I'd rather have it in the sparkly Flamingo Glitter pink! But if I can't get the pink that I want, I'll probably go with black because white will look dirty very easily, and black goes with everything. I'd prefer a metallic, glitter color of some kind, but the graphite really isn't any fun... Just because it's a medical item doesn't have to mean it has to look boring! I want my wheelchair to have some personality and match who I am.
I'm seriously considering trying the J3 Carbon backrest as well as it's said to be very good for people with lower back pain, which is something I battle with A LOT no matter what I do.
I know that I have several bulging discs already in 2013, but I also strongly suspect occult tethered cord, I meet many of the criteria for it, including that feeling of something being pulled inside my spine when I sit up with legs straight out and just looking down slightly. I don't trust my legs any longer for walking. I feel very insecure when I'm walking even just within my apartment because my legs can just give way anytime without warning so that I stumble and almost fall, those almost falls puts a lot of strain on the leg that gets the impact when trying to regain balance. And I have fallen without control too when my legs have just given way. Walking is overrated anyways, it just causes more pain, general fatigue and spasms in my legs, I'm better off using my wheelchair as much as possible. One easy way to put it is that I can not walk, I just do it anyways though only very short distances like from bed to bathroom or so. Being physically able to put one foot in front of the other is not the same as being able to walk...
My not yet formally diagnosed POTS hates it when I'm on my feet too, most of the time when I get tachycardia to the point where I feel I'm about to pass out, I'm standing up. Yet another reason to mostly use wheelchair, I get less issues with my heart rate when sitting!
Right now I quite feel like crying my eyes out. Not because of my physical situation, but because I feel overwhelmed and some anxiety is bothering me (that's very rare for me) and there's just been too much bad news lately... David Bowie, Alan Rickman, Glenn Frey... And that's just a few of the celebrities who have passed away in the past week or in 2016 this far... I barely even dare to open any social media or news page out of fear of more bad news right now.
I want to cry to relieve some pressure, but the tears just won't come for some reason, maybe because I often get a headache from crying so my body is being stubborn to avoid the headache.
I'm feeling slightly stressed as well, too many things I need to do, and so little energy to do it.
Next time I have a day with no plans at all, I'm just going to have some movie marathon and just relax! Might even start some tonight after I've finished the laundry (if I can even get outside, it's snowing at the moment) Just buy some chips, soda and candy and have a Star Wars marathon- I really LOVE those movies! Just wish I could see The Force Awakens whenever I want to, can't wait until it comes out on DVD!
In early February I'm heading up to Stockholm for a board meeting, that will be fun too even though it's a meeting. I'm part of an awesome team and we have fun while going through everything. I'm really looking forward to that weekend even though the long days and train journey to and from Stockholm really wipes me out for a week or two afterwards...
I haven't been writing for about a month now, simply been too busy and/or too tired. Been having a fair bit of social happenings over the holidays, along with my Ehlers-Danlos Syndrome flaring some with extra pain and fatigue.
At least something is finally happening wheelchair wise, I'm waiting for an appointment with the wheelchair center to try out a new manual wheelchair at last, after telling the occupational therapist for over a year that I do not sit well in my current wheelchair and need something more lightweight and active as I'm a very active and independent wheelchair user.
I just hope I'll get that appointment soon, and that it won't take long to get the new wheelchair once it's been ordered...
I wish I could get to choose color freely on the new wheelchair but unfortunately it doesn't work that way here, despite it not being an additional cost at all, it's just the region wanting to be boring and only letting people have white, black or graphite on the wheelchair model I think I'll go with: Quickie Helium which is known as Q7 in USA. I'd rather have it in the sparkly Flamingo Glitter pink! But if I can't get the pink that I want, I'll probably go with black because white will look dirty very easily, and black goes with everything. I'd prefer a metallic, glitter color of some kind, but the graphite really isn't any fun... Just because it's a medical item doesn't have to mean it has to look boring! I want my wheelchair to have some personality and match who I am.
I'm seriously considering trying the J3 Carbon backrest as well as it's said to be very good for people with lower back pain, which is something I battle with A LOT no matter what I do.
I know that I have several bulging discs already in 2013, but I also strongly suspect occult tethered cord, I meet many of the criteria for it, including that feeling of something being pulled inside my spine when I sit up with legs straight out and just looking down slightly. I don't trust my legs any longer for walking. I feel very insecure when I'm walking even just within my apartment because my legs can just give way anytime without warning so that I stumble and almost fall, those almost falls puts a lot of strain on the leg that gets the impact when trying to regain balance. And I have fallen without control too when my legs have just given way. Walking is overrated anyways, it just causes more pain, general fatigue and spasms in my legs, I'm better off using my wheelchair as much as possible. One easy way to put it is that I can not walk, I just do it anyways though only very short distances like from bed to bathroom or so. Being physically able to put one foot in front of the other is not the same as being able to walk...
My not yet formally diagnosed POTS hates it when I'm on my feet too, most of the time when I get tachycardia to the point where I feel I'm about to pass out, I'm standing up. Yet another reason to mostly use wheelchair, I get less issues with my heart rate when sitting!
Right now I quite feel like crying my eyes out. Not because of my physical situation, but because I feel overwhelmed and some anxiety is bothering me (that's very rare for me) and there's just been too much bad news lately... David Bowie, Alan Rickman, Glenn Frey... And that's just a few of the celebrities who have passed away in the past week or in 2016 this far... I barely even dare to open any social media or news page out of fear of more bad news right now.
I want to cry to relieve some pressure, but the tears just won't come for some reason, maybe because I often get a headache from crying so my body is being stubborn to avoid the headache.
I'm feeling slightly stressed as well, too many things I need to do, and so little energy to do it.
Next time I have a day with no plans at all, I'm just going to have some movie marathon and just relax! Might even start some tonight after I've finished the laundry (if I can even get outside, it's snowing at the moment) Just buy some chips, soda and candy and have a Star Wars marathon- I really LOVE those movies! Just wish I could see The Force Awakens whenever I want to, can't wait until it comes out on DVD!
In early February I'm heading up to Stockholm for a board meeting, that will be fun too even though it's a meeting. I'm part of an awesome team and we have fun while going through everything. I'm really looking forward to that weekend even though the long days and train journey to and from Stockholm really wipes me out for a week or two afterwards...
Sunday, December 20, 2015
Star Wars: The Force Awakens
Oh my, where do I even begin? I didn't think I'd get around to see the movie so soon after the premiere as I haven't been to a movie theater since Harry Potter And The Deathly Hallows movies came, which was quite a while ago now. Anyways, tonight I went to the recently opened new movie theater in my town and didn't just watch Star Wars: The Force Awakens once, but TWICE! I really just went out, purchased a ticket for the next showing and minutes later the movie started again.
It was so absolutely amazing! I don't want to drop any spoilers since many haven't gotten to see the movie yet, but I can say as much as GO SEE IT! You won't regret it! They have totally managed to catch the spirit of Star Wars in the movie in an absolutely epic way!
My favorite character is one called Rey, hence the name change in my blog. It's a female character that I felt I could relate to in quite a few ways, and since I'm a Jedi, I believe in and follow the Light side of the Force, so Rey Of Light it is, I just had to add the s at the end as the name had already been taken, it's also similar to ray of light and I always try to find a ray of light in my life even when things may feel heavy.
I've heard there will be more Star Wars movies too, and I for one just can't wait for the next!
If I could jump into the movies and be anyone, I'd be a Jedi and fighter pilot for the Resistance fighting the Galactic Empire and later the First Order.
Snapping back to reality rapidly now, I really need to go to sleep. My parents and I will be going to a mall early to do our Christmas shopping, we're leaving at 9am and it's currently nearing 2am and I barely slept last night, so yeah, I need some sleep and will likely try to dream about being a skilled Jedi and star pilot, I've always had pilot dreams and started to embrace the Force at about the time of Star Wars: The Phantom Menace, so it's been a while!
It was so absolutely amazing! I don't want to drop any spoilers since many haven't gotten to see the movie yet, but I can say as much as GO SEE IT! You won't regret it! They have totally managed to catch the spirit of Star Wars in the movie in an absolutely epic way!
My favorite character is one called Rey, hence the name change in my blog. It's a female character that I felt I could relate to in quite a few ways, and since I'm a Jedi, I believe in and follow the Light side of the Force, so Rey Of Light it is, I just had to add the s at the end as the name had already been taken, it's also similar to ray of light and I always try to find a ray of light in my life even when things may feel heavy.
I've heard there will be more Star Wars movies too, and I for one just can't wait for the next!
If I could jump into the movies and be anyone, I'd be a Jedi and fighter pilot for the Resistance fighting the Galactic Empire and later the First Order.
Snapping back to reality rapidly now, I really need to go to sleep. My parents and I will be going to a mall early to do our Christmas shopping, we're leaving at 9am and it's currently nearing 2am and I barely slept last night, so yeah, I need some sleep and will likely try to dream about being a skilled Jedi and star pilot, I've always had pilot dreams and started to embrace the Force at about the time of Star Wars: The Phantom Menace, so it's been a while!
Tuesday, December 15, 2015
Diabetes awareness!
I haven't posted for a while again. Been too busy and in between that, I've been resting a lot to manage the things I do.
As I'm typing this, I haven't slept at all yet and I'm watching a morning show on TV that I do like, but usually I'm asleep so I can only watch clips of it afterwards online. This morning they have a diabetes theme to the show because one of the hosts "celebrated" three years of being type 1 diabetic a few days ago and with that, decided to open up more and share his life as a type 1 diabetic to raise awareness for diabetes. Now it's been a well known fact that he's type 1 ever since he got diagnosed as he's never kept it hidden, but now he's really doing a lot to raise awareness for the condition after having received many emails from worried parents who have kids who feel ashamed about diabetes and hence not taking their insulin as they're supposed to. This morning it's not just the host who will be talking about his diabetes, they'll also have an 11 year old guy visiting who's had type 1 for the past five years, and they'll also have their TV doctor talking about diabetes.
I think it's absolutely amazing that Peter Jihde does this now, the response this far has been incredible and it's such an important subject! There can never be too much awareness for type 1 diabetes, so much can happen so fast with blood glucose levels and it's so important to respond fast to the changes or it can be very dangerous. There's still too little knowledge about diabetes among the general population, and some people are staring or say rude things if someone with diabetes check their blood glucose level or take insulin in public. The stares and rude comments can be very problematic as it makes some with diabetes feel uncomfortable to do their diabetes related things in public and instead feel that they need to hide or even go to the bathroom to inject insulin. Checking blood glucose and taking insulin is as natural as using a napkin when you eat, and really, there are things that are far worse to do at the table- blowing your nose at the table is one example! I'd rather sit in a room with 100 diabetics checking their blood and taking insulin at the table, than have one person blowing their nose anywhere near me when I eat! But then, I'm one of those who go under the type 3 label, type 3 being a person who is educated about diabetes and/or living with someone who has diabetes. I even have issues with my blood glucose myself at times and do own a blood glucose monitor that I use when I feel my levels may be off. I've seen 3.2mmol/l and 10.9mmol/l without being on any medicine that affects blood glucose, so yeah, some may even say I'm pre-diabetic but I do not have any diagnose, I do however keep an eye on it, especially at times where I need to take steroids because of my allergy, then I do become diabetic temporarily with levels up to 12.4mmol/l.
Checking blood glucose just involves a tiny drop of blood and normally there's little or no bleeding afterwards because the lancet is so tiny (nowhere near the size used in labs) so you don't really see what's going on unless you sit right next to the person. The needle used to inject insulin is so tiny you can barely see it regardless of the person using a syringe or a pen to inject. So why is it so uncomfortable for people to see? You don't even really hear what's going on, just a tiny click from the lancing device, maybe a beep from the monitor if the user hasn't turned off the beeps, and there may be a slight clicking sound from an insulin pen as you dial the dose and push it in, but again, you won't really notice it unless you're right next to the person.
Someone blowing their nose however... It sounds like an elephant farting and you can't miss it!
I fully support this awareness project by Peter Jihde, I quite frankly love it because he can reach so many people because of being a public person! His Instagram already has many thousand followers who support the project and it only just began on Saturday. He can educate so many now, and make fellow diabetics feel more comfortable about their situation and not feel ashamed about managing their diabetes in public.
While everything he does is in Swedish, I still want to share this with my international friends because this is so amazing, and since I have many friends around the world with diabetes, do check this Instagram account and feel free to use the hashtags and upload your own insulin injections to join the cause!
https://www.instagram.com/jihdesdiabetes/
Due to lack of sleep right now, my ability to type isn't what it's supposed to be but oh well. I just wanted to share this because I'm thrilled about the awareness coming out and wanted to share what an amazing TV host we have here in Sweden!
Here's a clip from his three year diaversary! http://www.tv4play.se/program/nyhetsmorgon?video_id=3232776
Hope you enjoy!
As I'm typing this, I haven't slept at all yet and I'm watching a morning show on TV that I do like, but usually I'm asleep so I can only watch clips of it afterwards online. This morning they have a diabetes theme to the show because one of the hosts "celebrated" three years of being type 1 diabetic a few days ago and with that, decided to open up more and share his life as a type 1 diabetic to raise awareness for diabetes. Now it's been a well known fact that he's type 1 ever since he got diagnosed as he's never kept it hidden, but now he's really doing a lot to raise awareness for the condition after having received many emails from worried parents who have kids who feel ashamed about diabetes and hence not taking their insulin as they're supposed to. This morning it's not just the host who will be talking about his diabetes, they'll also have an 11 year old guy visiting who's had type 1 for the past five years, and they'll also have their TV doctor talking about diabetes.
I think it's absolutely amazing that Peter Jihde does this now, the response this far has been incredible and it's such an important subject! There can never be too much awareness for type 1 diabetes, so much can happen so fast with blood glucose levels and it's so important to respond fast to the changes or it can be very dangerous. There's still too little knowledge about diabetes among the general population, and some people are staring or say rude things if someone with diabetes check their blood glucose level or take insulin in public. The stares and rude comments can be very problematic as it makes some with diabetes feel uncomfortable to do their diabetes related things in public and instead feel that they need to hide or even go to the bathroom to inject insulin. Checking blood glucose and taking insulin is as natural as using a napkin when you eat, and really, there are things that are far worse to do at the table- blowing your nose at the table is one example! I'd rather sit in a room with 100 diabetics checking their blood and taking insulin at the table, than have one person blowing their nose anywhere near me when I eat! But then, I'm one of those who go under the type 3 label, type 3 being a person who is educated about diabetes and/or living with someone who has diabetes. I even have issues with my blood glucose myself at times and do own a blood glucose monitor that I use when I feel my levels may be off. I've seen 3.2mmol/l and 10.9mmol/l without being on any medicine that affects blood glucose, so yeah, some may even say I'm pre-diabetic but I do not have any diagnose, I do however keep an eye on it, especially at times where I need to take steroids because of my allergy, then I do become diabetic temporarily with levels up to 12.4mmol/l.
Checking blood glucose just involves a tiny drop of blood and normally there's little or no bleeding afterwards because the lancet is so tiny (nowhere near the size used in labs) so you don't really see what's going on unless you sit right next to the person. The needle used to inject insulin is so tiny you can barely see it regardless of the person using a syringe or a pen to inject. So why is it so uncomfortable for people to see? You don't even really hear what's going on, just a tiny click from the lancing device, maybe a beep from the monitor if the user hasn't turned off the beeps, and there may be a slight clicking sound from an insulin pen as you dial the dose and push it in, but again, you won't really notice it unless you're right next to the person.
Someone blowing their nose however... It sounds like an elephant farting and you can't miss it!
I fully support this awareness project by Peter Jihde, I quite frankly love it because he can reach so many people because of being a public person! His Instagram already has many thousand followers who support the project and it only just began on Saturday. He can educate so many now, and make fellow diabetics feel more comfortable about their situation and not feel ashamed about managing their diabetes in public.
While everything he does is in Swedish, I still want to share this with my international friends because this is so amazing, and since I have many friends around the world with diabetes, do check this Instagram account and feel free to use the hashtags and upload your own insulin injections to join the cause!
https://www.instagram.com/jihdesdiabetes/
Due to lack of sleep right now, my ability to type isn't what it's supposed to be but oh well. I just wanted to share this because I'm thrilled about the awareness coming out and wanted to share what an amazing TV host we have here in Sweden!
Here's a clip from his three year diaversary! http://www.tv4play.se/program/nyhetsmorgon?video_id=3232776
Hope you enjoy!
Monday, October 12, 2015
Nearing 30
Only one week to go now until I hit 30! A number I was terrified of for a long time as I didn't know what would happen with my life and had a lot of uncertainty with how my economy would look like. In late August I finally managed to relax a little, I got THE letter, the letter that told me I had been awarded full, permanent disability as of October 2015 when I turn 30.
It's not something I wanted of course, but considering how my body is behaving, it's a necessary evil and I'm very happy that the system exists for when it's needed. I felt a kind of sad relief upon reading that letter, mostly relief as it meant I'll have a reliable income until I reach 65, but sadness because I only got a handful of years of working in my life, and left the job market before I even turned 26 because of the effects of my Ehlers-Danlos Syndrome that at that time was yet to be diagnosed.
A big part of my life is spent horizontal due to the intense pain and fatigue I'm experiencing every day. If I am to attend some activity I often need to rest up both before and after, and recovering from one single activity can take several days. Post exertion malaise at its finest or something... I have not been checked for ME/CFS but I have a lot of the symptoms associated with it, so I wouldn't be at all surprised if I have both Ehlers-Danlos Syndrome and ME/CFS, but getting another chronic, debilitating diagnose wouldn't really change a thing in my day to day life, and I was awarded my disability based on how my EDS is affecting me and how my day to day life looks like, so yeah, an additional diagnose that can't really be treated efficiently, won't make a difference in my life.
While I do feel some sadness about my inability to work, I am entering my 30's as a very happy individual who despite life's hardships holds her head high (sometimes with the help of an Aspen Vista neck brace), feel that she has accomplished things in life and make a difference for people. I am where I want to be in life and am not bitter about not being able to work even though I miss working, I'm not bitter about being disabled, instead I embrace the positive aspects of the life I live and make the most of it.
I have no fear of items that can help me live a more full life, like braces, medication and mobility aid. I have embraced my wheelchair and made it into a friend that enables me rather than disables me. My condition and disability has opened a whole new world to me, given me new interests and new friends from all over the world, and in all honesty: I wouldn't want to change a thing! (other than getting my work ability back)
Wheelchair technique and skills have become a bit of a passion to me, I'm constantly working on improving my balance and skills, and only just the other day I took a new step by trying going down a few steps in my wheelchair! I went down backwards as that's easier than bumping down on the back wheels in a wheelie, and I did great! Next step is to do it with more steps, and then learn to bump down in a wheelie as well, it's one of my big goals with my wheelchair skills!
In my nearing 30 years of life this far I have (without any order) traveled around in most of Scandinavia, visited North Cape three times before I even hit my teens, swimming in a lake on the North Cape island (that's like 71 degrees north!), I've been swimming in a fjord only a few hours drive south of North Cape, I've seen the midnight sun countless of times, seen a whale in a fjord, seen seals in the fjords, petted reindeer, seen a snowy owl in the wild (I LOVE owls), gone out on a bird safari by boat, fishing in a fjord in the midnight sun, been out in a forest at dusk and heard owls all around, seen the Aurora Borealis many times, seen the Aurora Borealis together with a comet, seen a complete lunar eclipse, been in an article in a pop magazine, met celebrities, won a trip overseas, been backstage at a tv show in Los Angeles, been to a concert with my absolute favorite band ever: Queen, seen Queen's private jet at the airport, been late to work because of President Obama visiting the city I lived in, seen the Swedish and Danish royal families in a mall, been married, gotten divorced, traveled to China three times, sat on The Great Wall enjoying the view and looking at the tourists on the other side of the road, seen the Olympic stadiums in Beijing, traveled by night train in China, traveled by Maglev train in Shanghai, had better chopstick skills than Chinese nationals, had my drivers license for 11 years, visited every region except for one in Sweden, visited (transfer or more): Norway, Finland, Denmark, United Kingdom, Portugal, Germany, Netherlands, China, USA, Poland and Greece, seen the sunrise over Mongolia, lived abroad (in Denmark), become an accessibility activist, occupied a tram together with 9 others in wheelchairs, gotten less shy, piloted a Jas39 Gripen figther jet (only a simulator, but still!) and much more!
My life has been anything but boring! I've seen and done so much both before and after my Ehlers-Danlos Syndrome became obvious. I live a pretty awesome life despite the limits that Ehlers-Danlos Syndrome causes. I focus on the positive rather than being bitter about the things I can no longer do.
I know I may be facing major surgery down the road because of my condition, I've already had one major surgery that Ehlers-Danlos Syndrome was likely the cause of- Two years ago, I had a complete hysterectomy and since then only have my ovaries left. If it wasn't for Ehlers-Danlos Syndrome, it's not likely I would have needed the surgery. Do I miss my ability of having biological children? Nope, not at all! I've never really been fond of children and because of my condition, a pregnancy would have been high risk and with a high risk of disabling me for life because of how I reacted negatively just to hormone contraceptives that were used to try to manage my periods before I had my surgery. I got much worse very fast with mini pills and hormone IUD, and even with it being over two years since I had anything more than just my ovaries, I'm battling pelvic issues that are normally associated with someone who's given birth to several children vaginally. I've never even been pregnant!
The rapid decline because of the hormones is one of the many reasons why I'm barely able to walk any longer and use my wheelchair close to 100% of the time when I'm not at home. It's simply not safe for me to walk, nor is it very effective along with causing a lot of pain and fatigue afterwards. It's simply not worth it to walk more than I absolutely have to, which means I walk at home within my apartment as it's not very accessible. I am not bitter about being in a wheelchair. As I mentioned earlier, it is my friend which enables me rather than disables me. It opened a new world with new possibilities and interests and friendships. I wouldn't change a thing!
In a couple of weeks I'll be in Stockholm at a camp for teens and young adults with physical disabilities, I went last year as well and had a blast! I'm really looking forward to the camp this year as well and can't wait! The place the camp is held at is very cozy, yet with a very inspirational atmosphere too it as it's a place where the Swedish elite athletes goes to exercise before major events. There's something special about trying various adaptive sports in the same arenas as the elite spends a lot of time in and walk (roll) in the same corridors, it's a lot of fun too, to meet others with disabilities and play sports together and just hang out, learn things and have fun!
Last year at the camp, I had a doe outside of the hotel room window one morning, and from the conference building you see parts of the archipelago. It's truly an amazing place!
Now I need to try to sleep, I've got a busy week ahead with a couple of meetings, some regular stuff I need to do (like laundry) and I also need to bake a cake as I've promised to bring cake to the next board meeting which is on Friday, because of my birthday next week. My friends in the board of the Gothenburg branch of the organization for young people with disabilities, mean a lot to me, as does the organization as a whole! Other than bringing cake to that meeting on Friday, I'm not really going to celebrate my 30th much. Will probably just have a quiet day with my parents on Monday, maybe we'll go out somewhere to have dinner, but I haven't planned for any party or organized celebration as that's just not my thing. I don't like to be the center of attention, and it feels awkward when people sing and I don't really care about gifts either. So it will just be a quiet day with some cake I think.
It's not something I wanted of course, but considering how my body is behaving, it's a necessary evil and I'm very happy that the system exists for when it's needed. I felt a kind of sad relief upon reading that letter, mostly relief as it meant I'll have a reliable income until I reach 65, but sadness because I only got a handful of years of working in my life, and left the job market before I even turned 26 because of the effects of my Ehlers-Danlos Syndrome that at that time was yet to be diagnosed.
A big part of my life is spent horizontal due to the intense pain and fatigue I'm experiencing every day. If I am to attend some activity I often need to rest up both before and after, and recovering from one single activity can take several days. Post exertion malaise at its finest or something... I have not been checked for ME/CFS but I have a lot of the symptoms associated with it, so I wouldn't be at all surprised if I have both Ehlers-Danlos Syndrome and ME/CFS, but getting another chronic, debilitating diagnose wouldn't really change a thing in my day to day life, and I was awarded my disability based on how my EDS is affecting me and how my day to day life looks like, so yeah, an additional diagnose that can't really be treated efficiently, won't make a difference in my life.
While I do feel some sadness about my inability to work, I am entering my 30's as a very happy individual who despite life's hardships holds her head high (sometimes with the help of an Aspen Vista neck brace), feel that she has accomplished things in life and make a difference for people. I am where I want to be in life and am not bitter about not being able to work even though I miss working, I'm not bitter about being disabled, instead I embrace the positive aspects of the life I live and make the most of it.
I have no fear of items that can help me live a more full life, like braces, medication and mobility aid. I have embraced my wheelchair and made it into a friend that enables me rather than disables me. My condition and disability has opened a whole new world to me, given me new interests and new friends from all over the world, and in all honesty: I wouldn't want to change a thing! (other than getting my work ability back)
Wheelchair technique and skills have become a bit of a passion to me, I'm constantly working on improving my balance and skills, and only just the other day I took a new step by trying going down a few steps in my wheelchair! I went down backwards as that's easier than bumping down on the back wheels in a wheelie, and I did great! Next step is to do it with more steps, and then learn to bump down in a wheelie as well, it's one of my big goals with my wheelchair skills!
In my nearing 30 years of life this far I have (without any order) traveled around in most of Scandinavia, visited North Cape three times before I even hit my teens, swimming in a lake on the North Cape island (that's like 71 degrees north!), I've been swimming in a fjord only a few hours drive south of North Cape, I've seen the midnight sun countless of times, seen a whale in a fjord, seen seals in the fjords, petted reindeer, seen a snowy owl in the wild (I LOVE owls), gone out on a bird safari by boat, fishing in a fjord in the midnight sun, been out in a forest at dusk and heard owls all around, seen the Aurora Borealis many times, seen the Aurora Borealis together with a comet, seen a complete lunar eclipse, been in an article in a pop magazine, met celebrities, won a trip overseas, been backstage at a tv show in Los Angeles, been to a concert with my absolute favorite band ever: Queen, seen Queen's private jet at the airport, been late to work because of President Obama visiting the city I lived in, seen the Swedish and Danish royal families in a mall, been married, gotten divorced, traveled to China three times, sat on The Great Wall enjoying the view and looking at the tourists on the other side of the road, seen the Olympic stadiums in Beijing, traveled by night train in China, traveled by Maglev train in Shanghai, had better chopstick skills than Chinese nationals, had my drivers license for 11 years, visited every region except for one in Sweden, visited (transfer or more): Norway, Finland, Denmark, United Kingdom, Portugal, Germany, Netherlands, China, USA, Poland and Greece, seen the sunrise over Mongolia, lived abroad (in Denmark), become an accessibility activist, occupied a tram together with 9 others in wheelchairs, gotten less shy, piloted a Jas39 Gripen figther jet (only a simulator, but still!) and much more!
My life has been anything but boring! I've seen and done so much both before and after my Ehlers-Danlos Syndrome became obvious. I live a pretty awesome life despite the limits that Ehlers-Danlos Syndrome causes. I focus on the positive rather than being bitter about the things I can no longer do.
I know I may be facing major surgery down the road because of my condition, I've already had one major surgery that Ehlers-Danlos Syndrome was likely the cause of- Two years ago, I had a complete hysterectomy and since then only have my ovaries left. If it wasn't for Ehlers-Danlos Syndrome, it's not likely I would have needed the surgery. Do I miss my ability of having biological children? Nope, not at all! I've never really been fond of children and because of my condition, a pregnancy would have been high risk and with a high risk of disabling me for life because of how I reacted negatively just to hormone contraceptives that were used to try to manage my periods before I had my surgery. I got much worse very fast with mini pills and hormone IUD, and even with it being over two years since I had anything more than just my ovaries, I'm battling pelvic issues that are normally associated with someone who's given birth to several children vaginally. I've never even been pregnant!
The rapid decline because of the hormones is one of the many reasons why I'm barely able to walk any longer and use my wheelchair close to 100% of the time when I'm not at home. It's simply not safe for me to walk, nor is it very effective along with causing a lot of pain and fatigue afterwards. It's simply not worth it to walk more than I absolutely have to, which means I walk at home within my apartment as it's not very accessible. I am not bitter about being in a wheelchair. As I mentioned earlier, it is my friend which enables me rather than disables me. It opened a new world with new possibilities and interests and friendships. I wouldn't change a thing!
In a couple of weeks I'll be in Stockholm at a camp for teens and young adults with physical disabilities, I went last year as well and had a blast! I'm really looking forward to the camp this year as well and can't wait! The place the camp is held at is very cozy, yet with a very inspirational atmosphere too it as it's a place where the Swedish elite athletes goes to exercise before major events. There's something special about trying various adaptive sports in the same arenas as the elite spends a lot of time in and walk (roll) in the same corridors, it's a lot of fun too, to meet others with disabilities and play sports together and just hang out, learn things and have fun!
Last year at the camp, I had a doe outside of the hotel room window one morning, and from the conference building you see parts of the archipelago. It's truly an amazing place!
Now I need to try to sleep, I've got a busy week ahead with a couple of meetings, some regular stuff I need to do (like laundry) and I also need to bake a cake as I've promised to bring cake to the next board meeting which is on Friday, because of my birthday next week. My friends in the board of the Gothenburg branch of the organization for young people with disabilities, mean a lot to me, as does the organization as a whole! Other than bringing cake to that meeting on Friday, I'm not really going to celebrate my 30th much. Will probably just have a quiet day with my parents on Monday, maybe we'll go out somewhere to have dinner, but I haven't planned for any party or organized celebration as that's just not my thing. I don't like to be the center of attention, and it feels awkward when people sing and I don't really care about gifts either. So it will just be a quiet day with some cake I think.
Saturday, September 5, 2015
Public service announcement!
Now first of all, I am not a medically trained person, nor do I live with the diagnose in question. I'm just someone who's taken the time and effort to read and learn, so that friends with the diagnose in question can feel safe when we hang out, and can come to me for support if they need to. I am a so called Type 3. I am of course talking about diabetes.
Having started to read about it in high school or just before due to having schoolmates and later, friends living with type 1 diabetes, I've had time to learn a fair bit through the years (probably some 15 years by now) about the differences between the various types of diabetes and its management.
It really grinds my gears when I hear someone say "oh, you have the bad diabetes" when someone who's insulin dependent either takes out their syringe, pen or insulin pump to take some insulin to correct a high blood glucose reading or cover for a meal or snack.
Now, there's no such thing as "bad diabetes" or even "bad diabetics" A diabetic taking insulin doesn't mean he or she got the bad diabetes, it merely means that he or she is an insulin dependent diabetic either because of an autoimmune reaction that ruined the insulin producing beta cells in the pancreas, or too little insulin is produced, or the person has some resistance to insulin and need more than the body produces itself.
Type 1 diabetes which is autoimmune, can hit someone at any time in their life though the most common is to be diagnosed in childhood to early adulthood sometime. Type 1 is always insulin dependent since the insulin production has been greatly reduced or completely eliminated due to the autoimmune reaction that attacked the insulin producing cells. Insulin has to be injected in some way as the gastric juices ruins the insulin, these injections can be done either with a single use syringe, a pre-filled or re-usable pen where you just change the needle for each injection and throw away the pre-filled pen when empty or put in a new cartridge of insulin if it's a re-usable pen, or you can use an insulin pump which gives a continuous infusion of insulin at a rate that you program it to and can set different rates per hour for different times of the day if you need to.
The body needs insulin both to function in general, but also to handle anything that you eat. Normally someone using syringes or pens will have two types of insulin, one slow acting which is injected once or twice daily, and one rapid acting to cover for meals, snacks or random high glucose levels. Someone using an insulin pump normally only have rapid acting insulin, and as mentioned above, the pump continuously gives insulin at the rate you've set it to, and for meals, you use the pump to give a dose that you select there and then based on what you're eating, what you're doing, current blood glucose, insulin to carbohydrate ratio, correction factor and sometimes even more factors are involved in determining the dose needed. Taking insulin for meals is the same regardless of delivery method, the only difference is that many new pumps can make the calculations for you, and that you can take a more precise dose compared to pens or syringes.
Whether an individual use a syringe, pen or pump is all about personal preference (and in the case of USA, what you can afford and what the insurance company will cover for you)
Each delivery method has both pro and cons though in general a pump is considered to give more freedom as you can set the delivery rate to fit your daily life more accurately. With a long acting insulin you can't make any changes here and now, nor can you get different doses at different times throughout the day. With a pump you can have for example 0.5 units of insulin per hour during some hours of the day, 0.75 unit per hour another time of the day and maybe you have the so called dawn phenomenon where the liver dumps out glucose to start waking you up in the early hours of the morning, with a pump you can program the pump to give a higher basal dose at the time where the dawn phenomenon occurs.
Wearing a pump doesn't mean someone has bad diabetes, or is a brittle diabetic or anything. It's just a personal preference to push some buttons instead of taking an injection several times per day, along with being able to have a tighter control over the blood glucose. The downside with a pump is that if it malfunctions and you don't catch it on time, you may end up with dangerously high glucose levels as you have no long acting on board to keep you level like you do on injections. Also, some people don't like the idea of being attached to something at all times.
As for type 2 diabetes, it's not autoimmune and may or may not require insulin injections. Normally it is diagnosed in adulthood but it's not unheard of in children and young adults. Genes play a big role in whether you get type 2 diabetes or not, it tends to run rampant in families and even keeping your weight at a good level and living a generally healthy life is not a guarantee to avoid developing type 2 diabetes, even though it's said to help preventing development of type 2 diabetes. Type 2 diabetes can also be associated with some medicines or other health issues, such as PCOS (Poly Cystic Ovary Syndrome) where your weight or lifestyle doesn't play a big role at all. Type 2 is not a fat person disease and no one who is diagnosed with type 2 diabetes has brought it onto themselves! Diabetes doesn't care what size you are!
Type 2 diabetes can be treated with a healthy lifestyle, tablets that lowers blood glucose either by making the pancreas produce more insulin or make the body more sensitive to the insulin produced, insulin through the same delivery methods as for type 1 diabetes, or injections of some fairly new medicines that also makes the body more sensitive to insulin.
Someone with diabetes will have both high and low blood glucose levels, no matter what they eat and how often they test blood glucose levels. The glucose does fluctuate all the time, it does in non diabetics as well, only that the body compensates for it automatically in a non diabetic and the fluctuations are less extreme. Someone with diabetes has to maintain a healthy glucose level by doing the things their body does no longer do on its own.
When someone has a low blood glucose it's very important for the person to eat something that contains carbohydrates, preferably simple carbohydrates like glucose as it enters the bloodstream faster than complex carbohydrates like starches. You do NOT give insulin to someone who has a LOW blood glucose!
In severe cases where the person is unresponsive, call for an ambulance immediately and if the person has a Glucagon kit and you know how to use it, administer glucagon as it will make the liver dump out glucose which will bring the glucose levels up. Eating something is important to not crash again. Severely low blood glucose left untreated may cause coma or even death.
Symptoms of low blood glucose includes but is not limited to: tiredness, shakiness, confusion, hunger, headache, mood swings
When someone has a high blood glucose it's important to get the glucose level down again, this can be done either by taking insulin, exercise some or in some cases, take extra medicine. Drinking fluid (sugar free) can help lower the levels some as well by flushing the system a bit. Nevertheless, it's important to stay hydrated, high blood glucose levels often cause the person to need to pee more which may rapidly lead to dehydration. Just keep in mind that only drinking water may wreck havoc with the electrolyte levels, so make sure to get some salts as well.
In severe cases where the person is unresponsive, call an ambulance. If ketones are present, you need to at least call a doctor unless you know how to handle it. The combination of high blood glucose and ketones may lead to a condition called Diabetic Ketoacidosis or DKA for short and it is a medical emergency. DKA is most common in type 1 diabetes, and is quite frequently seen in persons who are unaware of their diabetes before getting diagnosed.
DKA left untreated may cause coma or even death!
Symptoms of high blood glucose includes but is not limited to: excessive thirst, needing to pee often, tiredness, hunger, mood swings
Ketones is a waste product from the body burning fat for energy instead of glucose. Ketones in the combination with high blood glucose always needs to be taken seriously. It is not the same as having ketones in the bloodstream from eating a very low carbohydrate diet where ketones are desired.
I write this post as the basic knowledge around diabetes is very poor among the general public. Basic knowledge about one of our most common chronic conditions that comes with rapid changes that can quickly become dangerous unless treated correctly. It doesn't take long to learn how to recognize a low blood glucose and how to handle it, and it only takes a second to ask someone "Are you feeling okay?" if you see someone who doesn't look like he or she is feeling well and you recognize the signs. Don't assume that the person is drunk or on drugs!
Again, I'm not a doctor so don't use this post instead of seeking medical attention, nor use it as medical advice. I just wish to show some differences between the most common types and hopefully get rid of some misconceptions about both diabetes and how to help someone with diabetes who's having a rough time with their blood glucose.
It's sadly all too common that people think low blood glucose means needing insulin, when in fact it could be fatal to give insulin when someone has a low blood sugar.
People with diabetes got the condition for often unknown reasons, they did not eat too much sugar in their childhood!
Someone with diabetes can eat whatever they want, as long as it is covered for. But if you have someone over who has diabetes, don't assume that they'll want to have something very loaded with carbohydrates, have some various choices of foods and snacks and let the person choose instead, and don't question them if they have a piece of cake, or say no thanks to the very same cake.
Why I even write a long post like this?
Well, it happened again... A friend of mine who's had type 1 diabetes since long before I was born, had a nurse ask if it was the "bad diabetes" just because the insulin pump beeped! I mean seriously! A NURSE! *sighs*
End of rant and public service announcement. Have a nice day and now I shall continue to listen to music.
Having started to read about it in high school or just before due to having schoolmates and later, friends living with type 1 diabetes, I've had time to learn a fair bit through the years (probably some 15 years by now) about the differences between the various types of diabetes and its management.
It really grinds my gears when I hear someone say "oh, you have the bad diabetes" when someone who's insulin dependent either takes out their syringe, pen or insulin pump to take some insulin to correct a high blood glucose reading or cover for a meal or snack.
Now, there's no such thing as "bad diabetes" or even "bad diabetics" A diabetic taking insulin doesn't mean he or she got the bad diabetes, it merely means that he or she is an insulin dependent diabetic either because of an autoimmune reaction that ruined the insulin producing beta cells in the pancreas, or too little insulin is produced, or the person has some resistance to insulin and need more than the body produces itself.
Type 1 diabetes which is autoimmune, can hit someone at any time in their life though the most common is to be diagnosed in childhood to early adulthood sometime. Type 1 is always insulin dependent since the insulin production has been greatly reduced or completely eliminated due to the autoimmune reaction that attacked the insulin producing cells. Insulin has to be injected in some way as the gastric juices ruins the insulin, these injections can be done either with a single use syringe, a pre-filled or re-usable pen where you just change the needle for each injection and throw away the pre-filled pen when empty or put in a new cartridge of insulin if it's a re-usable pen, or you can use an insulin pump which gives a continuous infusion of insulin at a rate that you program it to and can set different rates per hour for different times of the day if you need to.
The body needs insulin both to function in general, but also to handle anything that you eat. Normally someone using syringes or pens will have two types of insulin, one slow acting which is injected once or twice daily, and one rapid acting to cover for meals, snacks or random high glucose levels. Someone using an insulin pump normally only have rapid acting insulin, and as mentioned above, the pump continuously gives insulin at the rate you've set it to, and for meals, you use the pump to give a dose that you select there and then based on what you're eating, what you're doing, current blood glucose, insulin to carbohydrate ratio, correction factor and sometimes even more factors are involved in determining the dose needed. Taking insulin for meals is the same regardless of delivery method, the only difference is that many new pumps can make the calculations for you, and that you can take a more precise dose compared to pens or syringes.
Whether an individual use a syringe, pen or pump is all about personal preference (and in the case of USA, what you can afford and what the insurance company will cover for you)
Each delivery method has both pro and cons though in general a pump is considered to give more freedom as you can set the delivery rate to fit your daily life more accurately. With a long acting insulin you can't make any changes here and now, nor can you get different doses at different times throughout the day. With a pump you can have for example 0.5 units of insulin per hour during some hours of the day, 0.75 unit per hour another time of the day and maybe you have the so called dawn phenomenon where the liver dumps out glucose to start waking you up in the early hours of the morning, with a pump you can program the pump to give a higher basal dose at the time where the dawn phenomenon occurs.
Wearing a pump doesn't mean someone has bad diabetes, or is a brittle diabetic or anything. It's just a personal preference to push some buttons instead of taking an injection several times per day, along with being able to have a tighter control over the blood glucose. The downside with a pump is that if it malfunctions and you don't catch it on time, you may end up with dangerously high glucose levels as you have no long acting on board to keep you level like you do on injections. Also, some people don't like the idea of being attached to something at all times.
As for type 2 diabetes, it's not autoimmune and may or may not require insulin injections. Normally it is diagnosed in adulthood but it's not unheard of in children and young adults. Genes play a big role in whether you get type 2 diabetes or not, it tends to run rampant in families and even keeping your weight at a good level and living a generally healthy life is not a guarantee to avoid developing type 2 diabetes, even though it's said to help preventing development of type 2 diabetes. Type 2 diabetes can also be associated with some medicines or other health issues, such as PCOS (Poly Cystic Ovary Syndrome) where your weight or lifestyle doesn't play a big role at all. Type 2 is not a fat person disease and no one who is diagnosed with type 2 diabetes has brought it onto themselves! Diabetes doesn't care what size you are!
Type 2 diabetes can be treated with a healthy lifestyle, tablets that lowers blood glucose either by making the pancreas produce more insulin or make the body more sensitive to the insulin produced, insulin through the same delivery methods as for type 1 diabetes, or injections of some fairly new medicines that also makes the body more sensitive to insulin.
Someone with diabetes will have both high and low blood glucose levels, no matter what they eat and how often they test blood glucose levels. The glucose does fluctuate all the time, it does in non diabetics as well, only that the body compensates for it automatically in a non diabetic and the fluctuations are less extreme. Someone with diabetes has to maintain a healthy glucose level by doing the things their body does no longer do on its own.
When someone has a low blood glucose it's very important for the person to eat something that contains carbohydrates, preferably simple carbohydrates like glucose as it enters the bloodstream faster than complex carbohydrates like starches. You do NOT give insulin to someone who has a LOW blood glucose!
In severe cases where the person is unresponsive, call for an ambulance immediately and if the person has a Glucagon kit and you know how to use it, administer glucagon as it will make the liver dump out glucose which will bring the glucose levels up. Eating something is important to not crash again. Severely low blood glucose left untreated may cause coma or even death.
Symptoms of low blood glucose includes but is not limited to: tiredness, shakiness, confusion, hunger, headache, mood swings
When someone has a high blood glucose it's important to get the glucose level down again, this can be done either by taking insulin, exercise some or in some cases, take extra medicine. Drinking fluid (sugar free) can help lower the levels some as well by flushing the system a bit. Nevertheless, it's important to stay hydrated, high blood glucose levels often cause the person to need to pee more which may rapidly lead to dehydration. Just keep in mind that only drinking water may wreck havoc with the electrolyte levels, so make sure to get some salts as well.
In severe cases where the person is unresponsive, call an ambulance. If ketones are present, you need to at least call a doctor unless you know how to handle it. The combination of high blood glucose and ketones may lead to a condition called Diabetic Ketoacidosis or DKA for short and it is a medical emergency. DKA is most common in type 1 diabetes, and is quite frequently seen in persons who are unaware of their diabetes before getting diagnosed.
DKA left untreated may cause coma or even death!
Symptoms of high blood glucose includes but is not limited to: excessive thirst, needing to pee often, tiredness, hunger, mood swings
Ketones is a waste product from the body burning fat for energy instead of glucose. Ketones in the combination with high blood glucose always needs to be taken seriously. It is not the same as having ketones in the bloodstream from eating a very low carbohydrate diet where ketones are desired.
I write this post as the basic knowledge around diabetes is very poor among the general public. Basic knowledge about one of our most common chronic conditions that comes with rapid changes that can quickly become dangerous unless treated correctly. It doesn't take long to learn how to recognize a low blood glucose and how to handle it, and it only takes a second to ask someone "Are you feeling okay?" if you see someone who doesn't look like he or she is feeling well and you recognize the signs. Don't assume that the person is drunk or on drugs!
Again, I'm not a doctor so don't use this post instead of seeking medical attention, nor use it as medical advice. I just wish to show some differences between the most common types and hopefully get rid of some misconceptions about both diabetes and how to help someone with diabetes who's having a rough time with their blood glucose.
It's sadly all too common that people think low blood glucose means needing insulin, when in fact it could be fatal to give insulin when someone has a low blood sugar.
People with diabetes got the condition for often unknown reasons, they did not eat too much sugar in their childhood!
Someone with diabetes can eat whatever they want, as long as it is covered for. But if you have someone over who has diabetes, don't assume that they'll want to have something very loaded with carbohydrates, have some various choices of foods and snacks and let the person choose instead, and don't question them if they have a piece of cake, or say no thanks to the very same cake.
Why I even write a long post like this?
Well, it happened again... A friend of mine who's had type 1 diabetes since long before I was born, had a nurse ask if it was the "bad diabetes" just because the insulin pump beeped! I mean seriously! A NURSE! *sighs*
End of rant and public service announcement. Have a nice day and now I shall continue to listen to music.
Thursday, August 20, 2015
Thoughts and travels
I haven't written in a long time now (again), the summer has been pretty busy and I've been pretty tired too.
I'm currently in a period of watching movies a lot to have something to do while resting, the movies of choice at the moment is the Star Wars movies as I've always loved them all, and have been fascinated with the universe ever since I was in elementary school. I even dreamed of becoming an astronaut when I was in 2nd grade...
The Star Wars movies are interesting too as they may very well be reality in another galaxy or a parallel universe that we just have not found yet, nor have the technological advancement to visit today.
I firmly believe that we are not alone in the universe, and I firmly believe that there's intelligent life somewhere else in the universe, intelligent life that makes us humans on earth look like cave men in comparison.
I also believe that our definition of habitable may not apply for all kinds of intelligent life. Maybe on another planet, the inhabitants breathe another gas than oxygen, and consider oxygen as bad we do with for example propane gas when it comes to breathing.
Our knowledge about the universe is also very narrow even though we know a lot more about it today than we did 100 years ago. Today we're still lacking the technology that is needed to explore more, and we're yet to develop a way of transportation that can cover great distances in a reasonable time. But I firmly believe that in the future, deep space travel will be quite possible. It's all about finding out how. In another galaxy we don't have the technology to explore yet, intelligent life forms may already be traveling between planets and planet systems. We just don't know about it because we can't see it and have a hard time imagining that there may be life out there that is greatly ahead of our own intelligence and technological advancement.
As for traveling, I haven't been to deep space *duh* but I did travel some last week. Last week a couple of friends and I were on vacation to Crete. It was my first charter vacation since 2002 and it was absolute bliss to just spend a week by the pool and sea, and catching some sun and enjoying the warm weather! Managed to not even get burnt in the sun, despite spending all day in the sun by the pool and the UV index reaching 10 (it reaches 5 here in summer, 6 if the ozone layer is unusually thin), SPF50+ kept us safe! I did feel better in Crete as well, not as much pain as I have at home, most likely due to the warm weather and the humidity being just right for me, I felt a bit more like a well oiled machinery. Same effect as I had in China in 2010 actually. I wish I could be in that environment more...
I absolutely love Crete! Just wish the accessibility was better so I could explore more. I had to leave my wheelchair at the hotel room all week because it was not possible to use the wheelchair due to narrow sidewalks, high curbs and such, so I mostly stayed at the hotel as my ability to walk is very limited. But other than the poor accessibility, I love it! Crete has such stunning scenery, and the people are so kind!
Now I've been back home since Saturday morning, and I'm paying physically for the trip as I did walk too much while in Crete and the flight took a toll on me as well. I've been in a lot of pain this week and felt very tired. My lower back, SI joints, hips and neck are not pleasant at all... Just today I have been mostly bed bound due to a bad headache from my neck, and had to wear my Aspen Vista collar to manage to attend an important meeting. Earlier in the day I couldn't even be upright without feeling like my head was about to fall off of my neck and explode.
A couple of days ago I was just sitting in my wheelchair at a neighborhood meeting and as I was going to fill a cup of water by the sink, my left hip subluxed just by me turning around slightly in my wheelchair.
My joints are unstable in every direction, and it seems, especially sensitive to being pulled. Even a very slight pull in a finger can completely separate my joints in that finger and my wrist for example. A slight pull on my arm and I feel my shoulder separating. So maybe me turning in the wheelchair a bit was enough of a pull for my hip to try to take a stroll on its own.
Now I need to try to take a shower. I'm really too tired, but I don't want to look like shit tomorrow when going outside, it's really enough feeling like shit most of the time without looking as bad as you feel...
I'm currently in a period of watching movies a lot to have something to do while resting, the movies of choice at the moment is the Star Wars movies as I've always loved them all, and have been fascinated with the universe ever since I was in elementary school. I even dreamed of becoming an astronaut when I was in 2nd grade...
The Star Wars movies are interesting too as they may very well be reality in another galaxy or a parallel universe that we just have not found yet, nor have the technological advancement to visit today.
I firmly believe that we are not alone in the universe, and I firmly believe that there's intelligent life somewhere else in the universe, intelligent life that makes us humans on earth look like cave men in comparison.
I also believe that our definition of habitable may not apply for all kinds of intelligent life. Maybe on another planet, the inhabitants breathe another gas than oxygen, and consider oxygen as bad we do with for example propane gas when it comes to breathing.
Our knowledge about the universe is also very narrow even though we know a lot more about it today than we did 100 years ago. Today we're still lacking the technology that is needed to explore more, and we're yet to develop a way of transportation that can cover great distances in a reasonable time. But I firmly believe that in the future, deep space travel will be quite possible. It's all about finding out how. In another galaxy we don't have the technology to explore yet, intelligent life forms may already be traveling between planets and planet systems. We just don't know about it because we can't see it and have a hard time imagining that there may be life out there that is greatly ahead of our own intelligence and technological advancement.
As for traveling, I haven't been to deep space *duh* but I did travel some last week. Last week a couple of friends and I were on vacation to Crete. It was my first charter vacation since 2002 and it was absolute bliss to just spend a week by the pool and sea, and catching some sun and enjoying the warm weather! Managed to not even get burnt in the sun, despite spending all day in the sun by the pool and the UV index reaching 10 (it reaches 5 here in summer, 6 if the ozone layer is unusually thin), SPF50+ kept us safe! I did feel better in Crete as well, not as much pain as I have at home, most likely due to the warm weather and the humidity being just right for me, I felt a bit more like a well oiled machinery. Same effect as I had in China in 2010 actually. I wish I could be in that environment more...
I absolutely love Crete! Just wish the accessibility was better so I could explore more. I had to leave my wheelchair at the hotel room all week because it was not possible to use the wheelchair due to narrow sidewalks, high curbs and such, so I mostly stayed at the hotel as my ability to walk is very limited. But other than the poor accessibility, I love it! Crete has such stunning scenery, and the people are so kind!
Now I've been back home since Saturday morning, and I'm paying physically for the trip as I did walk too much while in Crete and the flight took a toll on me as well. I've been in a lot of pain this week and felt very tired. My lower back, SI joints, hips and neck are not pleasant at all... Just today I have been mostly bed bound due to a bad headache from my neck, and had to wear my Aspen Vista collar to manage to attend an important meeting. Earlier in the day I couldn't even be upright without feeling like my head was about to fall off of my neck and explode.
A couple of days ago I was just sitting in my wheelchair at a neighborhood meeting and as I was going to fill a cup of water by the sink, my left hip subluxed just by me turning around slightly in my wheelchair.
My joints are unstable in every direction, and it seems, especially sensitive to being pulled. Even a very slight pull in a finger can completely separate my joints in that finger and my wrist for example. A slight pull on my arm and I feel my shoulder separating. So maybe me turning in the wheelchair a bit was enough of a pull for my hip to try to take a stroll on its own.
Now I need to try to take a shower. I'm really too tired, but I don't want to look like shit tomorrow when going outside, it's really enough feeling like shit most of the time without looking as bad as you feel...
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