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!
Thursday, July 31, 2014
Tuesday, July 15, 2014
A day out on the coast
Last week a good online friend of mine was on a coast camping resort little over an hour away from my town as her children are performing with a youth circus that had their show at the resort last week. So on Saturday I drove out there to see her, and to see the circus! The circus was really good, the performers were between 7 and 25 years old, and very skilled! My friend's daughter won the award for best performance this year at the circus, she's very skilled on unicycle, with acrobatics and now also aerial silks, but the different awards were announced long after the show so it was just the kids, their parents (and in some cases grandparents) who were there, and me as I was with my friend.
My friend, like me, has Ehlers-Danlos Syndrome, and that's how we got to know each other- through Facebook groups for the syndrome. We would likely have met long ago had it not been for the fact that we live several hours apart, but yeah, now when she was on the coast with the circus, it was within driving distance for me to go there.
We had an absolutely amazing afternoon and evening together! We have the same kind of humor, and way with words so we had so much fun together and quickly became great friends as our personal chemistry matches so well! I wish we could hang out more often, but we live so far apart so it takes a fair bit of planning to visit each other. But we're already planning on seeing each other soon again, I'll probably visit her at the same time as I go to Stockholm as her city is very near there, I haven't visited her city before, only gone through by car in the very outskirts so traveling there will be both exploring and hanging out, and most likely meeting more fellow zebras! She will most likely come visit here as well, and we'll probably go to Gothenburg together, I'll try to arrange a meetup with my friends in Gothenburg when she comes to visit as they'd like to meet her as well, and she wants to meet them as she's only talked with them on Facebook before.
Anyways, Saturday was awesome! And it was like a little mini vacation for me to drive out to the coast. Just getting away from home for a day and enjoy the summer weather, spend the day in a camping resort, one that I hadn't been to for 18 years, and to get to spend the day with such an awesome friend! We had such a nice time, I didn't start my drive home until about midnight and I got home shortly after 1am.
And for me, it's always nice going to a camping because it reminds me of my childhood as I grew up traveling around in northern Scandinavia every summer with my parents, living in a caravan for 4-5 weeks at a time. My parents left for their vacation on Friday so they're currently in the northern half of Sweden, one would think it's far north, but if you were to fold the country in half from north to south, they're actually just north of the middle. I know exactly where they are at the moment, and remember the scenery of the location despite it being 11 years since I was there last time. I'm hoping to go up there again sometime, but most likely I'd have to take the train or airplane up to the north and then rent a car because I don't think my body would be able to cope with so many miles in a car now.
But back to Saturday. Both my friend and I use a wheelchair to get around outside. Mine is fully manual, while my friend has the same model of wheelchair as me, but she has eMotion wheels on hers which only requires a gentle push on the rims and the electric motor in the wheel does the rest. Funnily enough, we have the same wheelchair measurement as well, so we could try each other's wheelchair to compare cushion and setup. When I tried hers, I did find she had a better setup on the backrest, it was lower than on mine and upright, my backrest is a tad bit reclined, but that can easily be adjusted. Changing the height is more difficult as that means needing to change the whole backrest, it's doable but nothing I can do myself, I will have it done though because I really feel my backrest is too high!
Trying the eMotion wheels was quite the adventure too because I've only used manual wheels before, it was pretty fun and very easy to move forward, but seeing my manual wheelchair being just about the only exercise I can manage, and the fact each eMotion wheel weighs more than my entire wheelchair, I prefer to stay with fully manual wheelchair for as long as I possibly can as I often lift it in and out of the car independently. My friend said my wheelchair was very easy to propel for a manual chair, and her shoulders are way worse off than mine- hence her using eMotion wheels. We also compared cushions, I had brought my old cushion as well just so she could try that one as well before I return that cushion to the wheelchair center. It's a Varilite Meridian cushion, about the only good thing about it is the low weight, but it didn't take long before I started to have pain when sitting on it, which is why I changed cushion to my current which is a Jay Xtreeme. My friend uses a Jay Easy which also has the Jay Fluid under the bum. I tried her cushion too and it was definitely a whole lot better than my Jay Xtreeme so I'm going to ask my occupational therapist to order one of those for me instead. The Jay Easy has more positioning and keeps the legs in place better, and it also felt like it had more Jay Fluid under the bum. I sometimes feel my Xtreeme feels hard, and my legs tends to fall outwards unless I manually hold them together which of course is tiring but very necessary due to my SI joints. The more my legs are helped to stay together, the better really.
It's always awesome meeting others with Ehlers-Danlos Syndrome and just chitchat and exchange experiences, extra awesome with the chemistry match with humor and such too, and it was definitely valuable to compare the wheelchairs as well.
I'm pretty exhausted since I came back home, and in fact lost the use of my legs for a while yesterday while being up at my parents place to tend the tomato plants on the balcony. I was just sitting in the sofa at my parents place watching some TV after watering the balcony plants and just letting the balcony door be open for a while to let some air into the apartment. As I was sitting there, I didn't feel my legs very well and had to look at them to know where they were, and I couldn't move them for a while, guess my body just shut down from fatigue, it has happened before as well, just not when I'm sitting alone on the 2nd floor with no elevator. I was wondering for a while how the hell I was going to get downstairs again to go home, and I had to take my wheelchair down the stairs too. I didn't want to slide down on my bum if I could avoid it as the stairs are hard and surface dirty. Fortunately it helped to rest for a while longer on the sofa and then I could slowly walk down the stairs with my wheelchair in front of me as usual.
Now I really need to try to sleep, it's already light outside and on Sunday I have to leave home already at around 6:30 to head out of town for a whole day event, so I'd better try to change my sleep pattern a bit during this week so I have slept in the night to Sunday!
My friend, like me, has Ehlers-Danlos Syndrome, and that's how we got to know each other- through Facebook groups for the syndrome. We would likely have met long ago had it not been for the fact that we live several hours apart, but yeah, now when she was on the coast with the circus, it was within driving distance for me to go there.
We had an absolutely amazing afternoon and evening together! We have the same kind of humor, and way with words so we had so much fun together and quickly became great friends as our personal chemistry matches so well! I wish we could hang out more often, but we live so far apart so it takes a fair bit of planning to visit each other. But we're already planning on seeing each other soon again, I'll probably visit her at the same time as I go to Stockholm as her city is very near there, I haven't visited her city before, only gone through by car in the very outskirts so traveling there will be both exploring and hanging out, and most likely meeting more fellow zebras! She will most likely come visit here as well, and we'll probably go to Gothenburg together, I'll try to arrange a meetup with my friends in Gothenburg when she comes to visit as they'd like to meet her as well, and she wants to meet them as she's only talked with them on Facebook before.
Anyways, Saturday was awesome! And it was like a little mini vacation for me to drive out to the coast. Just getting away from home for a day and enjoy the summer weather, spend the day in a camping resort, one that I hadn't been to for 18 years, and to get to spend the day with such an awesome friend! We had such a nice time, I didn't start my drive home until about midnight and I got home shortly after 1am.
And for me, it's always nice going to a camping because it reminds me of my childhood as I grew up traveling around in northern Scandinavia every summer with my parents, living in a caravan for 4-5 weeks at a time. My parents left for their vacation on Friday so they're currently in the northern half of Sweden, one would think it's far north, but if you were to fold the country in half from north to south, they're actually just north of the middle. I know exactly where they are at the moment, and remember the scenery of the location despite it being 11 years since I was there last time. I'm hoping to go up there again sometime, but most likely I'd have to take the train or airplane up to the north and then rent a car because I don't think my body would be able to cope with so many miles in a car now.
But back to Saturday. Both my friend and I use a wheelchair to get around outside. Mine is fully manual, while my friend has the same model of wheelchair as me, but she has eMotion wheels on hers which only requires a gentle push on the rims and the electric motor in the wheel does the rest. Funnily enough, we have the same wheelchair measurement as well, so we could try each other's wheelchair to compare cushion and setup. When I tried hers, I did find she had a better setup on the backrest, it was lower than on mine and upright, my backrest is a tad bit reclined, but that can easily be adjusted. Changing the height is more difficult as that means needing to change the whole backrest, it's doable but nothing I can do myself, I will have it done though because I really feel my backrest is too high!
Trying the eMotion wheels was quite the adventure too because I've only used manual wheels before, it was pretty fun and very easy to move forward, but seeing my manual wheelchair being just about the only exercise I can manage, and the fact each eMotion wheel weighs more than my entire wheelchair, I prefer to stay with fully manual wheelchair for as long as I possibly can as I often lift it in and out of the car independently. My friend said my wheelchair was very easy to propel for a manual chair, and her shoulders are way worse off than mine- hence her using eMotion wheels. We also compared cushions, I had brought my old cushion as well just so she could try that one as well before I return that cushion to the wheelchair center. It's a Varilite Meridian cushion, about the only good thing about it is the low weight, but it didn't take long before I started to have pain when sitting on it, which is why I changed cushion to my current which is a Jay Xtreeme. My friend uses a Jay Easy which also has the Jay Fluid under the bum. I tried her cushion too and it was definitely a whole lot better than my Jay Xtreeme so I'm going to ask my occupational therapist to order one of those for me instead. The Jay Easy has more positioning and keeps the legs in place better, and it also felt like it had more Jay Fluid under the bum. I sometimes feel my Xtreeme feels hard, and my legs tends to fall outwards unless I manually hold them together which of course is tiring but very necessary due to my SI joints. The more my legs are helped to stay together, the better really.
It's always awesome meeting others with Ehlers-Danlos Syndrome and just chitchat and exchange experiences, extra awesome with the chemistry match with humor and such too, and it was definitely valuable to compare the wheelchairs as well.
I'm pretty exhausted since I came back home, and in fact lost the use of my legs for a while yesterday while being up at my parents place to tend the tomato plants on the balcony. I was just sitting in the sofa at my parents place watching some TV after watering the balcony plants and just letting the balcony door be open for a while to let some air into the apartment. As I was sitting there, I didn't feel my legs very well and had to look at them to know where they were, and I couldn't move them for a while, guess my body just shut down from fatigue, it has happened before as well, just not when I'm sitting alone on the 2nd floor with no elevator. I was wondering for a while how the hell I was going to get downstairs again to go home, and I had to take my wheelchair down the stairs too. I didn't want to slide down on my bum if I could avoid it as the stairs are hard and surface dirty. Fortunately it helped to rest for a while longer on the sofa and then I could slowly walk down the stairs with my wheelchair in front of me as usual.
Now I really need to try to sleep, it's already light outside and on Sunday I have to leave home already at around 6:30 to head out of town for a whole day event, so I'd better try to change my sleep pattern a bit during this week so I have slept in the night to Sunday!
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!
Subscribe to:
Posts (Atom)