Yesterday I had a pretty nasty day. I woke up in a severe pain flare which nearly landed me in the ER due to the pain level. My hips felt like someone had hit them repeatedly with a baseball bat, my SI joints felt like someone was trying to take them apart with a crowbar, my knees had a kind of grinding pain in them, my neck was (and in a way still is) throwing a hissy fit and I had a spinal headache from my neck. Needless to say, I was in agony and I stayed in bed pretty much all day!
Seeing how I had big plans for today, I was pretty worried yesterday. I would have absolutely hated to have to cancel plans again, especially since it was an activity I had really been looking forward to!
Fortunately, this morning when I woke up, my pain level had eased enough so I felt well enough to drive and go to the event I had planned going to. I knew going would take a lot from me physically as it meant a 100 mile round trip, this time completely on my own, but at the same time, I've always loved driving, especially longer distances! I truly miss being able zooming mile after mile after mile like I used to. Driving today causes so much pain, much due to me driving a car that doesn't suit my needs. I drive a stick shift car without cruise control, but really should be driving an automatic car with cruise control, or even a handicap adapted car where you can drive either with feet or with hand controls, and of course with cruise control. Hopefully one day I'll have a car that fits my needs, either my own, or share with my parents- it's their stick shift car that I currently drive when I need to drive.
Anyways, I love driving! It's such a freedom to get behind the wheel and just go somewhere, see the landscape zoom past outside, see cars and trucks from different countries, see towns flash by as you drive through them, all while listening to some good radio station pretty loudly!
Today's freedom venture out of town was to attend a meeting, a meeting with a newly started political party aiming to improve the accessibility in Gothenburg to begin with, hopefully they'll go national as well. It's such a great initiative, just sad that it's needed. Even though I live out of town from where they're active now, I'll do ALL I can to help out in every way I can and attend as many meetings and events as my body can handle! Awareness and accessibility is something I have a passion for, it's so important, but often forgotten by the people who live a healthy and unlimited life.
People living with a condition or disability have to fight to be seen, to be heard and to get around! It's 2014 now, the days of putting disabled people in institutions are long gone, yet the public space outside isn't adapted to get around in. People living with a disability are frequently discriminated against by cities placing high curbs, cobble stones instead of smooth surfaces, no ramps or too steep ramps, no elevator (or a long detour to get to one- and you wonder why some wheelchair users simply use the escalator?)
We're constantly facing obstacles when out and about. All we want is independence and to get around like everyone else, use the same entrance like everyone else, be able to use public transportation without having to ask for assistance etc.
I'm really glad my Ehlers-Danlos decided to behave well enough today for me to attend this meeting in Gothenburg. I met some truly awesome people and I can't wait to see them all again!
I feel very motivated now! I have my local battle in town for better accessibility, and I'm definitely going to be in Gothenburg as much as I possibly can for events for accessibility!
I can always get out of my wheelchair to walk past an obstacle, but it shouldn't be needed! And I fight for those who can't get out of their wheelchairs to walk past an obstacle! My friend who started this political party and hosted the meeting today, is a paraplegic, he can't just stand up from his wheelchair and walk past an obstacle, his legs doesn't work at all!
Everything that helps someone in a wheelchair, makes life easier for EVERYONE else!
Showing posts with label Driving. Show all posts
Showing posts with label Driving. Show all posts
Tuesday, May 6, 2014
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!
Tuesday, April 22, 2014
It's a harsh world out there!
Despite living with a disabling, debilitating condition, I do my best to be independent in my life! I don't like asking for help if I can avoid to and I try to find ways to gain independence back where I feel my condition has intruded too much.
Tonight I decided that I shall do some laundry in the neighborhood laundry room as I don't have a washing machine in my apartment- my bathroom isn't big enough to have one. So I went to the laundry room and was instantly reminded of why I normally don't use the facility and have mum help me with most of my laundry! THE DOOR! The door into the facility is extremely heavy to both pull and push open, and you need to use a key badge to unlock it and the reader for the badge is very high up, especially if you're in a wheelchair of you're short. I'm tall enough when standing, but in my wheelchair I truly have to reach to unlock the door. Then comes the fun part of actually pulling the door open, preferably without dislocating every bone in your arm, something that may or may not happen in people living with Ehlers Danlos Syndrome or other disorders of the connective tissue that causes laxity of the ligaments.
I managed to get through the door without dislocating something, but I felt it was near both when I went to book the machines and when I went to load them. By the time I was putting my wash into the tumble dryer I decided it was better to just stay in the room until I was done, rather than battling the door a fourth time in just a few hours, by this time I was having bad neck pain, my right shoulder, elbow and hand felt like I had been trying to pull a dead elephant through the neighborhood. My back was no fun either but still figured I'd be less uncomfortable just sitting in my wheelchair waiting for the laundry to dry, than battling the door again.
My laundry was done about 1.5 hours ago, and I finally got back home, hopefully in one piece but in a lot of pain. Needless to say I have filed a complaint with the landlord regarding that door, kindly notifying them that I can not use the facility safely and that I'm not the only one struggling with how heavy that door is to open. I mean seriously, it should be a No Shit Sherlock to have a door to a public neighborhood facility accessible to anyone living in the neighborhood! And such a place as a laundry room is THE place where you kinda never go without carrying a load of things in or out said door. I've already been in touch with other tenants in the neighborhood who aren't disabled and they also struggle with that door to the laundry rooms, so it's not just me being a moaning bitch because of my condition, it IS a problem area!
I'm hoping the pain in my right side will ease in a few hours, but as it feels now I may have to resort to some extra painkillers as I think some muscles may have been strained or even sprained around the joints from opening the door.
Should the laundry room get an accessible door, I'd use the facility regularly as I prefer to wash my own laundry and have it done my way with tumble drying and the lush softness it provides! And it's also something that makes me feel like an adult and makes me feel independent! At this age I should be doing all those things on my own, and I know how to do them, there's just that physical obstacle to overcome before I'll be there!
On another note, I went to neighbor town this afternoon because I just felt like going out for a while and drive a bit, plus having a couple of things I needed to look for in a shop in town. As ever so often when I'm driving alone, I thank my lucky star that I have the handicap parking permit! I really wouldn't be out much if I didn't have it! I've needed to use it every time I've been out on my own lately as there's been so much people in the parking lots I've been parking at, and while I am able to self propel much longer than I'm able to walk, it's not safe to roll in a wheelchair behind parked cars in a busy parking lot!
Now I just hope I can manage to somehow get a car that's better for me to drive than the current stick shift that I'm driving. I've been talking with dad a lot about it lately as he's not getting younger and I'm not getting better. It would benefit both of us to have a car with automatic gears and cruise control, or even hand controls as his legs are beginning to trouble him from many years of being on blood pressure medications. I could of course apply for government funding for a handicap car with hand controls, or raise funds more actively through gofundme, but at the same time I feel, why do I need to have my own car when I live in the same neighborhood as my parents and they use the RV when going out over weekends and vacations these days? The regular car is always available these days! It would just be a waste of money to have three cars in one family, and it would save money both for me and my parents if we had one shared regular car that I can pay some of the tax and insurance on too. I don't know how it works with the tax and insurance costs if you get a car funded by the government due to your disability, need to check that out. When living on government disability benefits, you do have to think twice pretty often, you definitely don't have the same funds that you'd have if you were able to have a full time job!
I stayed in town for a couple of hours and went to some different shops, partly the shops I had errands to, and partly just looking around for the heck of it. Found the things I was looking for and then went to a cafe where they had home made ice cream! Seeing it was such a lovely day today, I've been outside in 3/4 length leggings and short sleeve or 3/4 sleeve all day until I got back from laundry! I just had to have ice cream today! Rocky road, chocolate and stracciatella were the flavors I tried today and it was divine! I'm so going to have ice cream in that cafe again next time I go into town!
I'll honestly have to say, it's even worth driving 15 miles each way JUST for this ice cream! The Rocky Road and Chocolate flavors were especially good! I guess you could say that I have a weakness for chocolate flavors!
Tonight I decided that I shall do some laundry in the neighborhood laundry room as I don't have a washing machine in my apartment- my bathroom isn't big enough to have one. So I went to the laundry room and was instantly reminded of why I normally don't use the facility and have mum help me with most of my laundry! THE DOOR! The door into the facility is extremely heavy to both pull and push open, and you need to use a key badge to unlock it and the reader for the badge is very high up, especially if you're in a wheelchair of you're short. I'm tall enough when standing, but in my wheelchair I truly have to reach to unlock the door. Then comes the fun part of actually pulling the door open, preferably without dislocating every bone in your arm, something that may or may not happen in people living with Ehlers Danlos Syndrome or other disorders of the connective tissue that causes laxity of the ligaments.
I managed to get through the door without dislocating something, but I felt it was near both when I went to book the machines and when I went to load them. By the time I was putting my wash into the tumble dryer I decided it was better to just stay in the room until I was done, rather than battling the door a fourth time in just a few hours, by this time I was having bad neck pain, my right shoulder, elbow and hand felt like I had been trying to pull a dead elephant through the neighborhood. My back was no fun either but still figured I'd be less uncomfortable just sitting in my wheelchair waiting for the laundry to dry, than battling the door again.
My laundry was done about 1.5 hours ago, and I finally got back home, hopefully in one piece but in a lot of pain. Needless to say I have filed a complaint with the landlord regarding that door, kindly notifying them that I can not use the facility safely and that I'm not the only one struggling with how heavy that door is to open. I mean seriously, it should be a No Shit Sherlock to have a door to a public neighborhood facility accessible to anyone living in the neighborhood! And such a place as a laundry room is THE place where you kinda never go without carrying a load of things in or out said door. I've already been in touch with other tenants in the neighborhood who aren't disabled and they also struggle with that door to the laundry rooms, so it's not just me being a moaning bitch because of my condition, it IS a problem area!
I'm hoping the pain in my right side will ease in a few hours, but as it feels now I may have to resort to some extra painkillers as I think some muscles may have been strained or even sprained around the joints from opening the door.
Should the laundry room get an accessible door, I'd use the facility regularly as I prefer to wash my own laundry and have it done my way with tumble drying and the lush softness it provides! And it's also something that makes me feel like an adult and makes me feel independent! At this age I should be doing all those things on my own, and I know how to do them, there's just that physical obstacle to overcome before I'll be there!
On another note, I went to neighbor town this afternoon because I just felt like going out for a while and drive a bit, plus having a couple of things I needed to look for in a shop in town. As ever so often when I'm driving alone, I thank my lucky star that I have the handicap parking permit! I really wouldn't be out much if I didn't have it! I've needed to use it every time I've been out on my own lately as there's been so much people in the parking lots I've been parking at, and while I am able to self propel much longer than I'm able to walk, it's not safe to roll in a wheelchair behind parked cars in a busy parking lot!
Now I just hope I can manage to somehow get a car that's better for me to drive than the current stick shift that I'm driving. I've been talking with dad a lot about it lately as he's not getting younger and I'm not getting better. It would benefit both of us to have a car with automatic gears and cruise control, or even hand controls as his legs are beginning to trouble him from many years of being on blood pressure medications. I could of course apply for government funding for a handicap car with hand controls, or raise funds more actively through gofundme, but at the same time I feel, why do I need to have my own car when I live in the same neighborhood as my parents and they use the RV when going out over weekends and vacations these days? The regular car is always available these days! It would just be a waste of money to have three cars in one family, and it would save money both for me and my parents if we had one shared regular car that I can pay some of the tax and insurance on too. I don't know how it works with the tax and insurance costs if you get a car funded by the government due to your disability, need to check that out. When living on government disability benefits, you do have to think twice pretty often, you definitely don't have the same funds that you'd have if you were able to have a full time job!
I stayed in town for a couple of hours and went to some different shops, partly the shops I had errands to, and partly just looking around for the heck of it. Found the things I was looking for and then went to a cafe where they had home made ice cream! Seeing it was such a lovely day today, I've been outside in 3/4 length leggings and short sleeve or 3/4 sleeve all day until I got back from laundry! I just had to have ice cream today! Rocky road, chocolate and stracciatella were the flavors I tried today and it was divine! I'm so going to have ice cream in that cafe again next time I go into town!
I'll honestly have to say, it's even worth driving 15 miles each way JUST for this ice cream! The Rocky Road and Chocolate flavors were especially good! I guess you could say that I have a weakness for chocolate flavors!
Subscribe to:
Posts (Atom)