Psoriasis?!
Yup, it looks like that anyways. I'm yet to see a doctor about it though, just trying hydrocortisone cream on it first to see if it helps, if nothing else it's keeping me somewhat sane while waiting to see a doctor because I can count on having to wait for an appointment.
The reason I think it's psoriasis? My paternal grandfather had it, my dad has it, my maternal grandmother probably had it. My spots look like psoriasis and the family history says it may very well be. I've asked in a couple of closed groups as well what they think, and showed my parents and everyone has agreed that it looks like psoriasis.
I'm not letting this stop me though! My affected areas are visible when I'm wearing swimwear, but I wear swimwear anyways and I go swimming because I have every right to, just like anyone else! If people stare at me, that's their problem, not mine.
Anyways, I started getting some psoriasis-ish marks a few weeks ago now and have in the past couple of weeks gotten more of them. But I've been out enjoying the summer anyways, and even went to a water park almost two weeks ago now. The water park was a lot of fun! I haven't been there for over ten years and I do love being in the water, so with this awesome summer weather outside, a friend and I decided to go. It was extremely tiring in the park, especially in the pool area as that area has anything but flat ground. In other words, the pool area wasn't accessible at all, so I had to walk more than I had planned to, which of course tired me out completely. I was barely human when I got home that evening, thankfully I managed to drive home but had it been just a few miles more, I would have had to take a break to rest before driving the rest of the way home.
The day my friend and I went to the park, it was very warm (for being here) and very sunny, so by the time we came to the pool area, my POTS was acting up some and I was close to passing out from the heat so needed to get into a pool ASAP. In that process, I forgot to put on sunscreen, and also forgot to when getting up to rest a bit. Needless to say, I got a tad bit sun burnt that day! But seeing I was out in the sun for about 7 hours, mostly in water, I didn't get even nearly as burnt as I had expected to, probably much thanks to me already having a little tan when arriving the park and my skin having had time to adapt to the sun since about April as we've had an unusually warm and sunny spring and summer!
Now my redness has shifted to tan, I'm more tanned now than I've been in many years! Still shedding some skin but nothing too bad. To be honest, I wasn't even in much pain from this sunburn, I've been a lot worse in the past, so this was nothing.
My joints are feeling pretty decent in these summer temperatures, though I still have to be careful so I don't overdo it, the heat doesn't cure my Ehlers-Danlos Syndrome, it merely makes it a bit more manageable. I've probably been overdoing it lately, it happens so easily as soon as the pain is a bit more manageable than usual... So now I'm extremely fatigued!
I was going to go to a market in a nearby town this morning, but when I woke up I just felt that okay, no driving today! Then shortly after I fell asleep again and didn't manage to wake up properly until 3:30pm despite having slept for about 6 hours or so when my alarm sounded at 9 this morning. So yeah, that's what fatigue can do to you! Been really tired all day even with all that sleep so probably going to try to sleep pretty soon, I just can not stop yawning today!
Bit worried about one of my friends too, a friend who has Osteogenesis imperfecta, he was in an accident over the weekend and is currently in hospital with two broken legs and a broken shoulder and is going to be transferred to a bigger hospital sometime this week for surgery. Due to the complexity of his fractures, only one hospital in Sweden can manage it. I just hope his surgery or surgeries will be successful and that he will recover fast! Right now I'm anxiously waiting for updates from him, as is all his other friends!
Showing posts with label Chronically Awesome. Show all posts
Showing posts with label Chronically Awesome. Show all posts
Thursday, July 31, 2014
Thursday, July 3, 2014
Cervical instability and headaches, plus some other odds and ends.
I'm in a period of headaches again it seems. I totally overdid it on Friday when a friend and I went out of town for a day's leisure with some shopping and a trip to the indoor adventure pool where we stayed for about 6 hours, playing in the pool with wave machine, riding the water slide, jumping into the water from the trampoline, relaxing in the sauna or jaccuzzi and taking quick dips in the cold water pool which had a water temperature of about 10C or 50F. On top of the long day out and all the activity I also drove both ways as my friend doesn't have a drivers license.
I don't know if the headache is just from totally overdoing it on Friday, or if it's my unstable neck throwing one of its random hissy fits, or if it's a combination of overdoing it and a random hissy fit. My guess is that it is the latter! Either way, you know your neck is bad when putting in some metal scrap in the neck to stabilize it sounds like a good idea even though that would be a very major surgery...
I really hate these headaches! They're so debilitating and no morphine in the world can ease the pain in my neck and at the base of my skull and the headache, the only things I can do is to lie down or wear my Aspen Vista cervical collar, preferably lie down WITH the Aspen Vista collar. Fortunately I do not get light and sound sensitivity as I do with migraines, so I can at least use my laptop when having one of those cervical headaches, I often end up watching a movie unless I just sleep in an attempt to sleep the headache away.
I'm at least feeling a bit better now than I did just some hours ago. I both looked and felt more dead than alive during a Google+ hangout with some friends earlier tonight, when the headache hit me less than an hour before the hangout began, I even considered skipping the hangout today because I felt so awful and just wanted to rest, but these hangouts are like the highlight of the week so I really don't want to miss one if I'm just at home at the time! If I'm out somewhere, I even do all I can to be home on time to attend the hangouts, that's how important it is to me!
On a totally different note. I'm beginning to feel I need to make some adjustments on my wheelchair. I've had it coming for a while, but now I definitely think I shall call my occupational therapist to make an appointment at the wheelchair center for some technician to make adjustments to improve my positioning in the chair and make the wheelchair fit me even better. One of the things I'd like to change is the angle of the backrest, it's currently slightly reclined but I'd like to try adjusting it to straight instead to see if that makes it more comfortable. I'd also- if possible, want the backrest to be lowered slightly. If possible I'd also like to change the axle so the camber goes from 4 degrees to just 2 degrees or even 0 to make the wheelchair more compact. May also need to make some adjustment to the center of gravity, but I'm not sure. There's both pro and con with making the chair more tippy than it is now. Pro would be easier to pull a wheelie and stay there. Con would be easier to fall backwards. I am used to the setting I have at the moment and I'm really good at wheelies, I just sometimes feel the chair is a bit front heavy which isn't needed since my balance in it is very good, and the front heaviness makes it a bit more difficult to keep the wheelie when rolling down a ramp for example. But I'll see, seeing it's the major vacation period here now, I'll probably have to wait until August or so before anything can be done to my wheelchair so the staff at the wheelchair center can focus on emergencies instead, either emergency repairs on wheelchairs or urgent fitting for new wheelchair users who need a chair ASAP for one reason or another.
While I do want to have the adjustments made quite soon, it's not like it's an emergency so I don't have to have it done while many of the technicians are on vacation!
Having a couple of events coming in the next week and a half too. One meetup with EDS friends which will include a boat trip to some island in the archipelago, and next week another EDS friend from another part of the country is coming to this area, or well, at least much closer than usual as she'll be about 50 miles away compared to over 300 miles, so I'm hoping to go see her when she's in the area! But much of it depends on my neck. If I can only do one activity I'll definitely choose seeing my friend who's normally not in this area, my other friends are people I meet at least about once every month so if I have to cancel one meetup I'll just see them soon enough anyways. I'm hoping my neck and the rest of my body will behave though so I can do both activities! Just going to rest as much as I possibly can for the next couple of days, hoping that it will be enough.
Now I really need to sleep, it's 5am and already light outside. Just this headache has kept me awake most of the night as I haven't been able to get comfortable... Been watching a movie to have something to do before writing this post, but now I'm utterly exhausted so fuck this headache, I'm going to sleep!
I don't know if the headache is just from totally overdoing it on Friday, or if it's my unstable neck throwing one of its random hissy fits, or if it's a combination of overdoing it and a random hissy fit. My guess is that it is the latter! Either way, you know your neck is bad when putting in some metal scrap in the neck to stabilize it sounds like a good idea even though that would be a very major surgery...
I really hate these headaches! They're so debilitating and no morphine in the world can ease the pain in my neck and at the base of my skull and the headache, the only things I can do is to lie down or wear my Aspen Vista cervical collar, preferably lie down WITH the Aspen Vista collar. Fortunately I do not get light and sound sensitivity as I do with migraines, so I can at least use my laptop when having one of those cervical headaches, I often end up watching a movie unless I just sleep in an attempt to sleep the headache away.
I'm at least feeling a bit better now than I did just some hours ago. I both looked and felt more dead than alive during a Google+ hangout with some friends earlier tonight, when the headache hit me less than an hour before the hangout began, I even considered skipping the hangout today because I felt so awful and just wanted to rest, but these hangouts are like the highlight of the week so I really don't want to miss one if I'm just at home at the time! If I'm out somewhere, I even do all I can to be home on time to attend the hangouts, that's how important it is to me!
On a totally different note. I'm beginning to feel I need to make some adjustments on my wheelchair. I've had it coming for a while, but now I definitely think I shall call my occupational therapist to make an appointment at the wheelchair center for some technician to make adjustments to improve my positioning in the chair and make the wheelchair fit me even better. One of the things I'd like to change is the angle of the backrest, it's currently slightly reclined but I'd like to try adjusting it to straight instead to see if that makes it more comfortable. I'd also- if possible, want the backrest to be lowered slightly. If possible I'd also like to change the axle so the camber goes from 4 degrees to just 2 degrees or even 0 to make the wheelchair more compact. May also need to make some adjustment to the center of gravity, but I'm not sure. There's both pro and con with making the chair more tippy than it is now. Pro would be easier to pull a wheelie and stay there. Con would be easier to fall backwards. I am used to the setting I have at the moment and I'm really good at wheelies, I just sometimes feel the chair is a bit front heavy which isn't needed since my balance in it is very good, and the front heaviness makes it a bit more difficult to keep the wheelie when rolling down a ramp for example. But I'll see, seeing it's the major vacation period here now, I'll probably have to wait until August or so before anything can be done to my wheelchair so the staff at the wheelchair center can focus on emergencies instead, either emergency repairs on wheelchairs or urgent fitting for new wheelchair users who need a chair ASAP for one reason or another.
While I do want to have the adjustments made quite soon, it's not like it's an emergency so I don't have to have it done while many of the technicians are on vacation!
Having a couple of events coming in the next week and a half too. One meetup with EDS friends which will include a boat trip to some island in the archipelago, and next week another EDS friend from another part of the country is coming to this area, or well, at least much closer than usual as she'll be about 50 miles away compared to over 300 miles, so I'm hoping to go see her when she's in the area! But much of it depends on my neck. If I can only do one activity I'll definitely choose seeing my friend who's normally not in this area, my other friends are people I meet at least about once every month so if I have to cancel one meetup I'll just see them soon enough anyways. I'm hoping my neck and the rest of my body will behave though so I can do both activities! Just going to rest as much as I possibly can for the next couple of days, hoping that it will be enough.
Now I really need to sleep, it's 5am and already light outside. Just this headache has kept me awake most of the night as I haven't been able to get comfortable... Been watching a movie to have something to do before writing this post, but now I'm utterly exhausted so fuck this headache, I'm going to sleep!
Wednesday, April 30, 2014
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!
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!
Monday, April 28, 2014
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!
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!
Saturday, April 5, 2014
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!
Thursday, April 11, 2013
Spring seems to have sprung, and the biological warfare has begun...
As mum and I were outside with my cat Nisse yesterday, we saw a real spring sign outside, we spotted blooming dandelions! It's also getting warmer outside and being outdoors is rather pleasant temperature wise and weather wise.
However, it's more than us humans who likes the warmer weather, I am of course talking about the trees outside, they burst with joy over the sunshine and warmer weather, releasing their yellow powder of mass sneezing!
Yup, I'm already pretty badly affected by my pollen allergy, and that's just with low to medium levels of Hazel and another tree not even Google translate could find the name of. I'm having a sore throat and this morning when I woke up, my nose was full of what felt like wallpaper glue! A cold you may think, but no, I do get this way from allergy, it behaves a bit like a cold but without feeling sick like I do when being down with a cold. With pollen allergy I get out of breath very easily and my nose doesn't really get runny, I get the wallpaper glue instead. I've taken antihistamines for over a month already to be well prepared for the sneazon also known as spring, but seems I will need to add Betamethasone within the next week anyways. My nose got slightly better today after starting with the fluticasone nasal spray again, which also indicates it's allergy and not a cold I'm having. The fatigue is pretty bad as well, which also indicates allergy. I kinda wish the trees would have waited with their war until after my mum's birthday party on Sunday as I need as much energy as possible on Sunday and next week as I have so much going on.
Other than sneezing along, life is rolling and I've had a great chat with my Chronically Awesome friends again tonight. It's so nice to have a safe haven to just talk with others, no judgement, just talking and listening, supporting each other and share experiences. There's no comparing illnesses or competition who's the most ill. It's just supportive and I always feel it would be amazing to meet everyone in person one day!
At the moment I'm just writing this post, while smiling when thinking back on the chat earlier :)
The picture is of one of the dandelions I found yesterday!
However, it's more than us humans who likes the warmer weather, I am of course talking about the trees outside, they burst with joy over the sunshine and warmer weather, releasing their yellow powder of mass sneezing!
Yup, I'm already pretty badly affected by my pollen allergy, and that's just with low to medium levels of Hazel and another tree not even Google translate could find the name of. I'm having a sore throat and this morning when I woke up, my nose was full of what felt like wallpaper glue! A cold you may think, but no, I do get this way from allergy, it behaves a bit like a cold but without feeling sick like I do when being down with a cold. With pollen allergy I get out of breath very easily and my nose doesn't really get runny, I get the wallpaper glue instead. I've taken antihistamines for over a month already to be well prepared for the sneazon also known as spring, but seems I will need to add Betamethasone within the next week anyways. My nose got slightly better today after starting with the fluticasone nasal spray again, which also indicates it's allergy and not a cold I'm having. The fatigue is pretty bad as well, which also indicates allergy. I kinda wish the trees would have waited with their war until after my mum's birthday party on Sunday as I need as much energy as possible on Sunday and next week as I have so much going on.
Other than sneezing along, life is rolling and I've had a great chat with my Chronically Awesome friends again tonight. It's so nice to have a safe haven to just talk with others, no judgement, just talking and listening, supporting each other and share experiences. There's no comparing illnesses or competition who's the most ill. It's just supportive and I always feel it would be amazing to meet everyone in person one day!
At the moment I'm just writing this post, while smiling when thinking back on the chat earlier :)
The picture is of one of the dandelions I found yesterday!
Thursday, April 4, 2013
Sometimes you just gotta laugh!
Laughing is good for everyone, but it can be especially important if you're struggling in any way. Last night while chatting with my Chronically Awesome friends, I read some out of an American slang dictionary that I bought the other day, and let me tell you this: It's impossible to read the page containing Fuc without laughing your ass off and have fountain tears like a clown! Yes, the dictionary does have the word FUCK in it, and a handful of other words containing fuck, not quite what you expect to find in a book purchased in Sweden.
Talking about Sweden, let me give you a fartfull experience in my native language!
Our word for speed tends to crack foreigners up, the word is no other than fart, so we have farthinder, infart, utfart, påfart, avfart, fartgräns, and many other words related to traffic that contains the word fart.
So, you might think we're driving around in a lot of flatulence but that's not quite the case, even though our language can be rather hilarious if you mix Swedish and English and get into Swenglish.
So here comes a short gassy list of Swenglish words to get you around in the traffic, in Swedish, English and Swenglish!
Farthinder- Speed bump- Fart bump
Infart- Entrance to parking lots etc- In fart
Utfart- Exit from above mentioned- Out fart
Påfart- Entrance to highway- On fart
Avfart- Highway exit- Off fart
Fartgräns- Speed limit- Fart limit
Fartfull- Full speed or action filled- Fart full
There are tons more of fart words and expressions in the Swedish language, but these are the ones I could think of just on the go like this.
And always remember: It's not the fart that kills, it's the smäll (smäll is pronounced like smell) (It's not the speed that kills, it's the impact)
Be careful with the gas (accelerator) on the roads and always follow the fart recommendations and fart limits, they're there for a reason ;)
Talking about Sweden, let me give you a fartfull experience in my native language!
Our word for speed tends to crack foreigners up, the word is no other than fart, so we have farthinder, infart, utfart, påfart, avfart, fartgräns, and many other words related to traffic that contains the word fart.
So, you might think we're driving around in a lot of flatulence but that's not quite the case, even though our language can be rather hilarious if you mix Swedish and English and get into Swenglish.
So here comes a short gassy list of Swenglish words to get you around in the traffic, in Swedish, English and Swenglish!
Farthinder- Speed bump- Fart bump
Infart- Entrance to parking lots etc- In fart
Utfart- Exit from above mentioned- Out fart
Påfart- Entrance to highway- On fart
Avfart- Highway exit- Off fart
Fartgräns- Speed limit- Fart limit
Fartfull- Full speed or action filled- Fart full
There are tons more of fart words and expressions in the Swedish language, but these are the ones I could think of just on the go like this.
And always remember: It's not the fart that kills, it's the smäll (smäll is pronounced like smell) (It's not the speed that kills, it's the impact)
Be careful with the gas (accelerator) on the roads and always follow the fart recommendations and fart limits, they're there for a reason ;)
Thursday, March 28, 2013
How a Panthera wheelchair changed my life
I mentioned in my blog post yesterday that I've now got a wheelchair, and it's not just any wheelchair but a Panthera S2 wheelchair which is light, very easy to propel, easy to pop a wheelie with and the S2 wheelchair I have is customized just for me according to my measurements and needs. I've had my wheelchair for over a week now and it's already feeling like a part of me!
I know a lot of people who aren't paralyzed see a wheelchair as a failure, and they do all they can to avoid one, and I can from my own experience now say that getting a wheelchair is not a failure and absolutely nothing to be afraid of!
If you live with a debilitating condition such as EDS, that affects your ability to walk and stand, a wheelchair can really change your life to the better the same moment you sit in the chair for the first time.
For several months now, getting out has been far from easy, many weeks I only managed to get out maybe 2-3 times in a whole week due to being in too much pain to begin with, or being in too much pain after coming back home. All my excursions outside had to be planned ahead of time and things I should have been looking forwards to often became something to worry about and hoping that my body would behave on the day of the event.
I wanted to go out more, I felt like a prisoner at home but the icy roads and aching body kept me indoors more than I'd like.
Last Monday I got my Panthera S2 wheelchair, and all of a sudden, I got my life back! I sit well in the wheelchair so I can sit for a longer period of time than I can manage on a regular chair, not needing to stand up as much has lessened the pain in my lower back and SI joints and letting my legs rest outdoors makes me walk better and with less pain when I'm at home. Using the wheelchair when I'm out of town has also improved my physical ability to drive a car thanks to being in less pain when I get into the drivers seat.
I also find that self propelling the wheelchair puts less strain on my shoulders, elbows, wrists and hands than walking with a cane or crutches does, and that's just an added bonus. I can now get outside whenever I feel like it and cover a greater distance than I can walk, much faster than I can walk and feeling a lot less achy and fatigued than after walking. I no longer need to take the car to go to places within my town, I take the wheelchair which means I both get exercise and save gas.
I'm active again, more so than I've managed to be in several months. I'm outside every day now, either for an errand, or just take a roll around in town for the fresh air and exercise. My arms are getting stronger, something that will hopefully help my shoulders stay in place better in the long run and the wheelchair also helps me with my balance when practicing wheelies or handling curbs outside. I'm already feeling the anti tip wheels are in the way, but will use them for a while longer until I know exactly what movements I can do without tipping backwards, it hardly ever happens but better safe than sorry!
I went to a travel and tourism fair in Gothenburg this past Saturday and I drove both ways, I couldn't have done that without having my wheelchair to get around at the fair. In the evening I went to a concert in another town, and thanks to having the wheelchair at the fair I managed both the fair and the concert and all the driving it involved to go there and back.
Some says getting a wheelchair makes you lazy. I'd say that's not true! For me at least, using the wheelchair outside is saving my back and legs for indoor things such as cooking and housework and it is enabling me to be more active, social and take part in more activities and I'm even going to look into if there's any handicap sports in my area where I can meet others living with a disability and maybe try some light sports like sitting table tennis, all to be more social and active in ways that I am able to. I can not keep up with fully able bodied people all the time, they're too fast paced and high intensity and they don't always understand what it's like to live with a disability, be it a disability from an injury or a condition.
Now I'm looking forwards to another fair in Gothenburg which is in April, a fair for people living with a disability and people who work with the various equipment used for making life easier. Live and function is the name of the fair if directly translating it to English and I'm literally bouncing with excitement to go there!
The decision to request a wheelchair wasn't easy to make, but it is by far the best decision I've made this far in the management of my EDS. A wheelchair isn't a cure, but it has taken away some of the dis out of disability, leaving me with more ability!
My wheelchair has really changed my life, and my experience as a part time wheelchair user is only positive!
I feel Chronically Awesome!
If you live with a chronic condition or know someone who does, check out www.chronicallyawesome.org
I know a lot of people who aren't paralyzed see a wheelchair as a failure, and they do all they can to avoid one, and I can from my own experience now say that getting a wheelchair is not a failure and absolutely nothing to be afraid of!
If you live with a debilitating condition such as EDS, that affects your ability to walk and stand, a wheelchair can really change your life to the better the same moment you sit in the chair for the first time.
For several months now, getting out has been far from easy, many weeks I only managed to get out maybe 2-3 times in a whole week due to being in too much pain to begin with, or being in too much pain after coming back home. All my excursions outside had to be planned ahead of time and things I should have been looking forwards to often became something to worry about and hoping that my body would behave on the day of the event.
I wanted to go out more, I felt like a prisoner at home but the icy roads and aching body kept me indoors more than I'd like.
Last Monday I got my Panthera S2 wheelchair, and all of a sudden, I got my life back! I sit well in the wheelchair so I can sit for a longer period of time than I can manage on a regular chair, not needing to stand up as much has lessened the pain in my lower back and SI joints and letting my legs rest outdoors makes me walk better and with less pain when I'm at home. Using the wheelchair when I'm out of town has also improved my physical ability to drive a car thanks to being in less pain when I get into the drivers seat.
I also find that self propelling the wheelchair puts less strain on my shoulders, elbows, wrists and hands than walking with a cane or crutches does, and that's just an added bonus. I can now get outside whenever I feel like it and cover a greater distance than I can walk, much faster than I can walk and feeling a lot less achy and fatigued than after walking. I no longer need to take the car to go to places within my town, I take the wheelchair which means I both get exercise and save gas.
I'm active again, more so than I've managed to be in several months. I'm outside every day now, either for an errand, or just take a roll around in town for the fresh air and exercise. My arms are getting stronger, something that will hopefully help my shoulders stay in place better in the long run and the wheelchair also helps me with my balance when practicing wheelies or handling curbs outside. I'm already feeling the anti tip wheels are in the way, but will use them for a while longer until I know exactly what movements I can do without tipping backwards, it hardly ever happens but better safe than sorry!
I went to a travel and tourism fair in Gothenburg this past Saturday and I drove both ways, I couldn't have done that without having my wheelchair to get around at the fair. In the evening I went to a concert in another town, and thanks to having the wheelchair at the fair I managed both the fair and the concert and all the driving it involved to go there and back.
Some says getting a wheelchair makes you lazy. I'd say that's not true! For me at least, using the wheelchair outside is saving my back and legs for indoor things such as cooking and housework and it is enabling me to be more active, social and take part in more activities and I'm even going to look into if there's any handicap sports in my area where I can meet others living with a disability and maybe try some light sports like sitting table tennis, all to be more social and active in ways that I am able to. I can not keep up with fully able bodied people all the time, they're too fast paced and high intensity and they don't always understand what it's like to live with a disability, be it a disability from an injury or a condition.
Now I'm looking forwards to another fair in Gothenburg which is in April, a fair for people living with a disability and people who work with the various equipment used for making life easier. Live and function is the name of the fair if directly translating it to English and I'm literally bouncing with excitement to go there!
The decision to request a wheelchair wasn't easy to make, but it is by far the best decision I've made this far in the management of my EDS. A wheelchair isn't a cure, but it has taken away some of the dis out of disability, leaving me with more ability!
My wheelchair has really changed my life, and my experience as a part time wheelchair user is only positive!
I feel Chronically Awesome!
If you live with a chronic condition or know someone who does, check out www.chronicallyawesome.org
Wednesday, March 27, 2013
Managing life with EDS
I have EDS type 3, also known as HEDS or EDS-HT or EDS III or EDS hypermobility type. A dear child has many names as they say. I have probably mentioned my diagnose many times before in blog posts, but mention it again here as some reading this may not have read my blog before. Anyways, EDS III, which is what I have, is often considered the least severe type of EDS as far as mortality goes, but it's also known to be the most painful type of EDS and sadly we tend to either need enough painkillers to knock out an entire kindergarten just to get out of bed, or we're so super sensitive to medicines that it's close to impossible or even impossible to find a solution as far as pain medication goes. I belong to the group of EDS'ers who need strong, narcotic painkillers to function somewhat in my daily life, and I'm fortunate enough to not be completely resistant to the strong stuff like some with EDS may be.
Thought I'd make a list of the things that are most helpful to me in managing my daily life with EDS, a lot of it applies to any chronic condition, so here goes.
BendyJen's top 10 (that are all equally important, hence no numbers)
- Having a good doctor: It's so important to have a good doctor when you live with a chronic condition, someone who knows YOUR story and YOUR needs and who doesn't question your needs but do all (s)he can to help you in the best way possible.
- Pain management: Whether you take painkillers or not, that is YOUR decision, I have chosen to take painkillers even though I HATE it. I get relief from my painkillers and I have absolutely no side effects from them other than the positive side effect that I can actually function better when I'm in less pain.
- Support: Be it support from your family or friends or a chronically awesome online community, having people around you that understands, has your back and give you a push in the right direction when you struggle really means the world to someone living with EDS or another chronic condition.
- A pet: A pawesome furry friend can do so much for you! Few things are as soothing as the love and snuggles from a pet. Both cats and dogs can also alert you when something isn't right and a dog can be trained to become your certified service dog if you need to have one to manage your daily life. I have a cat and he knows when I'm not well, he won't leave my side and he's the most loving individual ever, and I love him more than words can describe. Without my cat, I wouldn't be where I am today.
- An occupational therapist: With EDS and many other conditions comes the fact that you are living with a disability and even the simplest of things as taking a shower or using the loo can become an issue. An occupational therapist can help you with things such as a shower chair, heightened toilet seat, work chair to use in the kitchen and various bits and pieces you may need to be more independent at home. I personally have the heightened toilet seat and a shower chair which really has made my life easier, along with making showering safer for me.
- Orthotics: With EDS, helping the joints to stay in place with bracing can be very helpful when you're in extra pain, or doing something that may lead to getting injured, or to let a joint rest for a while after a dislocation or partial dislocation. The only thing we should watch out with really is to become dependent on the orthotics, so it should be used in moderation only. I have a couple of rather impressive knee braces, wrist braces, Miami J Advanced neck collar, thumb braces and ring splints for my fingers to aid my function and/or relieve pain, but I only wear any of it as little as I possibly can and have been told by medical professionals I'm doing the right thing- listening to my body.
- Walking aid: If you have trouble walking, there's absolutely no shame in using a cane or crutch(es) to aid your walking if you feel it helps you and make you feel more secure when walking. Even young people can use a cane and they're available in really fancy colors and patterns these days! Even a walker can be helpful, though I could never get myself to use one for many reasons, I stuck with cane or crutches and still do when I walk.
- Wheelchair: If walking simply gets too tiring and/or painful, don't see a wheelchair as a failure! A wheelchair can really give you your life back and you don't have to be paralyzed to use one! Wheelchairs are available in many different models and from many brands, and there's one out there that will meet your needs, be it a manual or powerchair that you need, or why not a manual wheelchair with power assisted wheels? I have a Panthera S2 wheelchair since little more than a week now and my life has changed drastically for the better since I got it! I am in less pain in my ankles, knees, hips and lower back when I use my wheelchair outside of home. I can cover greater distances in the wheelchair than if I'm walking, and I can self propel a lot faster than I can walk, and it costs me less energy. In short, the wheelchair has made me active again and instead of being stuck at home too much, I now go out every day in the wheelchair and get exercise that way, and I look forward to events instead of feeling nervous about my walking ability and pain level on the day of the event.
- Talk to others: Knowing you're not alone with your condition and having somewhere to turn to when you need to ask something specific to the condition you live with means a lot. Join your local support group for your diagnose if you have one of those groups and/or the NGO for your condition, or join an online group for people with your diagnose. There's a myriad of Facebook groups that are diagnose specific where you can chat with others and make friends and find out that you're not alone in experiencing the symptoms and issues that you have. There's also Chronically Awesome which is a community for anyone living with any chronic condition, it's a great place to "meet" up with others fighting a chronic condition and you'll most likely find at least someone else having the same diagnose as you have. Suffering in silence doesn't help anyone, there's help and support out there!
- Accept: Accept your condition and disability and make the most of what ability you do have. Accepting that something is life long and maybe progressive isn't easy, but accepting it is a good start to living well with whatever your condition throws at you.
These are the things that helps me the most in managing my life with EDS, all of it equally as important. I take part in both diagnose specific and general support groups online, I have a very supportive family and friends and the most amazing cat you can imagine! Even though I have all the things I mention above, it doesn't mean that my life is a dance. I do struggle, and sometimes I struggle a lot, but by having the support and items that I need, I can live a better life. The item that helps my daily life the most has to be my wheelchair as it's enabling me to be a lot more independent, active, enables me to take part in things and makes me need the car a lot less. My wheelchair is both a part of my pain management and a mobility aid and for the time being at least, my shoulders, elbows, wrists and hands are strong enough to self propel. I do have issues in those joints as well, but my experience is that the wheelchair puts less strain on them than walking with a walking aid does, along with the fact that sitting in my custom adapted wheelchair lessens my lower back pain and makes my legs hurt less. I should probably write a whole blog post about my wheelchair soon, seeing it's past 4:30am in my part of the world now, that blog post won't be tonight.
Be well, and remember, you are not alone!
Thought I'd make a list of the things that are most helpful to me in managing my daily life with EDS, a lot of it applies to any chronic condition, so here goes.
BendyJen's top 10 (that are all equally important, hence no numbers)
- Having a good doctor: It's so important to have a good doctor when you live with a chronic condition, someone who knows YOUR story and YOUR needs and who doesn't question your needs but do all (s)he can to help you in the best way possible.
- Pain management: Whether you take painkillers or not, that is YOUR decision, I have chosen to take painkillers even though I HATE it. I get relief from my painkillers and I have absolutely no side effects from them other than the positive side effect that I can actually function better when I'm in less pain.
- Support: Be it support from your family or friends or a chronically awesome online community, having people around you that understands, has your back and give you a push in the right direction when you struggle really means the world to someone living with EDS or another chronic condition.
- A pet: A pawesome furry friend can do so much for you! Few things are as soothing as the love and snuggles from a pet. Both cats and dogs can also alert you when something isn't right and a dog can be trained to become your certified service dog if you need to have one to manage your daily life. I have a cat and he knows when I'm not well, he won't leave my side and he's the most loving individual ever, and I love him more than words can describe. Without my cat, I wouldn't be where I am today.
- An occupational therapist: With EDS and many other conditions comes the fact that you are living with a disability and even the simplest of things as taking a shower or using the loo can become an issue. An occupational therapist can help you with things such as a shower chair, heightened toilet seat, work chair to use in the kitchen and various bits and pieces you may need to be more independent at home. I personally have the heightened toilet seat and a shower chair which really has made my life easier, along with making showering safer for me.
- Orthotics: With EDS, helping the joints to stay in place with bracing can be very helpful when you're in extra pain, or doing something that may lead to getting injured, or to let a joint rest for a while after a dislocation or partial dislocation. The only thing we should watch out with really is to become dependent on the orthotics, so it should be used in moderation only. I have a couple of rather impressive knee braces, wrist braces, Miami J Advanced neck collar, thumb braces and ring splints for my fingers to aid my function and/or relieve pain, but I only wear any of it as little as I possibly can and have been told by medical professionals I'm doing the right thing- listening to my body.
- Walking aid: If you have trouble walking, there's absolutely no shame in using a cane or crutch(es) to aid your walking if you feel it helps you and make you feel more secure when walking. Even young people can use a cane and they're available in really fancy colors and patterns these days! Even a walker can be helpful, though I could never get myself to use one for many reasons, I stuck with cane or crutches and still do when I walk.
- Wheelchair: If walking simply gets too tiring and/or painful, don't see a wheelchair as a failure! A wheelchair can really give you your life back and you don't have to be paralyzed to use one! Wheelchairs are available in many different models and from many brands, and there's one out there that will meet your needs, be it a manual or powerchair that you need, or why not a manual wheelchair with power assisted wheels? I have a Panthera S2 wheelchair since little more than a week now and my life has changed drastically for the better since I got it! I am in less pain in my ankles, knees, hips and lower back when I use my wheelchair outside of home. I can cover greater distances in the wheelchair than if I'm walking, and I can self propel a lot faster than I can walk, and it costs me less energy. In short, the wheelchair has made me active again and instead of being stuck at home too much, I now go out every day in the wheelchair and get exercise that way, and I look forward to events instead of feeling nervous about my walking ability and pain level on the day of the event.
- Talk to others: Knowing you're not alone with your condition and having somewhere to turn to when you need to ask something specific to the condition you live with means a lot. Join your local support group for your diagnose if you have one of those groups and/or the NGO for your condition, or join an online group for people with your diagnose. There's a myriad of Facebook groups that are diagnose specific where you can chat with others and make friends and find out that you're not alone in experiencing the symptoms and issues that you have. There's also Chronically Awesome which is a community for anyone living with any chronic condition, it's a great place to "meet" up with others fighting a chronic condition and you'll most likely find at least someone else having the same diagnose as you have. Suffering in silence doesn't help anyone, there's help and support out there!
- Accept: Accept your condition and disability and make the most of what ability you do have. Accepting that something is life long and maybe progressive isn't easy, but accepting it is a good start to living well with whatever your condition throws at you.
These are the things that helps me the most in managing my life with EDS, all of it equally as important. I take part in both diagnose specific and general support groups online, I have a very supportive family and friends and the most amazing cat you can imagine! Even though I have all the things I mention above, it doesn't mean that my life is a dance. I do struggle, and sometimes I struggle a lot, but by having the support and items that I need, I can live a better life. The item that helps my daily life the most has to be my wheelchair as it's enabling me to be a lot more independent, active, enables me to take part in things and makes me need the car a lot less. My wheelchair is both a part of my pain management and a mobility aid and for the time being at least, my shoulders, elbows, wrists and hands are strong enough to self propel. I do have issues in those joints as well, but my experience is that the wheelchair puts less strain on them than walking with a walking aid does, along with the fact that sitting in my custom adapted wheelchair lessens my lower back pain and makes my legs hurt less. I should probably write a whole blog post about my wheelchair soon, seeing it's past 4:30am in my part of the world now, that blog post won't be tonight.
Be well, and remember, you are not alone!
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