Tuesday, April 23, 2013
Wearing green for FOP!
Today I'm wearing green, and my green silicone bracelet from Ali's Army! Ali is a young girl in America living with the very very rare condition FOP or Fibrodysplasia Ossificans Progressiva which basically means her muscles and connective tissue is slowly but surely turning into bone and will eventually, unless a cure or treatment is found, make her entire body rigid. It is a very painful and disabling condition and very little is known about it, much due to how rare it is.
Surgery to remove bone? Sadly it tends to trigger more bone growth rather than easing the problem, even a light bump against the body can trigger an inflammation and cause more bone growth. FOP is one of the rarest conditions known to man and more research and awareness is needed to help those who are affected.
To learn more about FOP, please visit http://www.ifopa.org/what-is-fop/overview.html educate yourself, wear green and spread the word!
To support Ali's Army, visit http://www.alis-army.org/
I joined the fight! Have you?
Friday, April 19, 2013
My brain feels like the Duracell bunny on speed!
I have so much going on in my head right now, brilliant plans and ideas and I'm itching to get started with it all and basically just need to decide where to put it all!
My brain is so full of ideas and thoughts it feels like the Duracell bunny on speed, and I haven't taken any drugs other than my usual painkiller which doesn't affect me anything else than removing some of the pain. I just have a very creative thunderstorm going on between my brain cells and plans and ideas unfolding faster than you can say Quantum physics!
Now if these brilliant ideas and plans would just choose to unfold in daytime and not at 4am, I'd be a happier bunny lol
I'm beyond overtired and yet I can't sleep because my mind is just too busy with my ideas!
This might well be the masterpiece I've been waiting for since I got laid off from work due to my physical health situation back in 2011!
My brain is so full of ideas and thoughts it feels like the Duracell bunny on speed, and I haven't taken any drugs other than my usual painkiller which doesn't affect me anything else than removing some of the pain. I just have a very creative thunderstorm going on between my brain cells and plans and ideas unfolding faster than you can say Quantum physics!
Now if these brilliant ideas and plans would just choose to unfold in daytime and not at 4am, I'd be a happier bunny lol
I'm beyond overtired and yet I can't sleep because my mind is just too busy with my ideas!
This might well be the masterpiece I've been waiting for since I got laid off from work due to my physical health situation back in 2011!
Thursday, April 18, 2013
A really amazing day!
The day had an early start seeing I had to be up early and leave home already at 7:30, but oh my was it worth it! I've had a really incredible day and just can't stop smiling!
I've been to the disability fair in Gothenburg and I had so much fun there and met so many nice people, learned a lot and for once, felt completely normal and "at home" since having a disability was the norm at the fair unless you were there as an assistant or someone working within the field of disability equipment or organizations for disabled people. I got so much great advice today and got in touch with several organizations for young people in my area, which means a great opportunity to make new friends and have a very nice social life where everyone is at the same level and everyone is attending within their own limits, no judging or no need to perform beyond your ability.
Also had a nice long chat with one of the assemblers working for Panthera Wheelchairs, that guy I chatted with is a paraplegic and he helped me remove the holders for the push handles on my Panthera S2 since I never use the push handles on my wheelchair anyways. Removing the handles and their holders has made my wheelchair about 1kg (~2.5lbs) lighter which does make a huge difference when lifting the wheelchair in and out of the car. Since there wasn't much people around at that time we had time to just chitchat for a while and we discussed how people often look upon wheelchairs- many consider it a failure to use a wheelchair unless being paralyzed, and they prefer stumbling around and being limited in their mobility, anything to avoid the wheelchair! Be it MS, Ehlers Danlos, ME/CFS or any other condition that might limit your ability to walk well. Both him and I agreed on that avoiding a wheelchair like that is really kinda stupid, being in a wheelchair to relieve legs is NOT a failure, instead, see it as a way of saving your legs for other things than walking around outdoors, in malls, at fairs and any other long distance walk that might cause a lot of pain and fatigue. For me, being in a wheelchair meant I could go to the fair today, and not just that, I also drove both ways, alone in the car! That was at least like 85 miles round trip and I haven't been able to drive that far on my own and be active for a whole day on top of it, since before my body started crashing rapidly.
For a long time, walking made me too achy and fatigued it wasn't safe for me to drive more than maybe 20 miles in one go. Now with the wheelchair, my legs are just there but not used when I'm in the wheelchair, which means they're relatively fresh when I get out of the chair and into the drivers seat and that gives me many more miles I can drive before my legs are getting too painful.
While in the wheelchair, I focus all my strength and stability to my upper body, and just let my lower back and legs rest, and that has actually made my arms and shoulders much stronger lately and my shoulders feel more stable, along with being able to cover a greater distance than I'd be able to if I was using my legs to walk.
The guy from Panthera could totally understand even though he has no use of his legs, but he does probably get to hear and see a lot of people who don't accept a wheelchair in their lives until they reach a point of no return when it comes to medical conditions causing the need for a wheelchair. If having an accident it's really not much choice when it comes to the wheelchair, but for us who has a choice... Me and the Panthera guy just couldn't understand why people wait so damn long before they just bite the lemon, request a wheelchair and get at least a part of their life and mobility back!
In the Panthera area of the fair they also showed the different models of wheelchairs they offer, I didn't take a test drive in any, but did try to lift the latest chair: Panthera X, the world's lightest wheelchair and OMG! The wheelchair frame weighs so little it's almost like lifting paper! It's made of carbon fiber and the whole frame weighs about 5-7lbs something without the back wheels on! Now that's one very light chair!
It was also pretty amazing to see how many wheelchair users at the fair were actually using a Panthera X since it's so new on the market still and significantly more pricey than the Panthera U2 Light or U2 or S2, I didn't expect the regions to cover the Panthera X that widely but seems they do! That was a very positive surprise.
I also talked with a representative from Lofric (Astra Zeneca's catheters) at the fair, started to talk since I had been dealing a lot with Lofric catheters while working in the warehouse so it was a kind of "work injury" to have a chat, and I just happened to mention how I tend to not feel my bladder and use the restroom way too little for my own good, it does happen far too often I wait for so long I get stabbing pain in my kidneys so it's not good. She had 19 years of experience of working with Lofric and she said it's definitely not good to have it that way as I have it, I have been considering the ER a few times when I just can't go and it's been maybe 12 hours since last restroom visit and having been drinking a lot of fluids. Said and done, since I know the theory inside out from having read the manual at work many times when being bored due to computer errors and whatnot, she sent a demo box of 5 with me and advised me to try it out at home and then contact my local clinic if I wish to continue with it. Not for every restroom visit obviously, but as a backup for when I don't feel my bladder or just can't go for too many hours, she said I'd feel a lot better if emptying every 3-4 hours in one way or another, it would be better for my bladder and kidneys in the long run. We only have one bladder and two kidneys and we need to treat them well! Seeing I have friends with severe retention and issues, and my issues are an early warning signal... I really don't mind self cath when needed if that means better health.
A lot of people really struggle to stay away from anything that could help them in the long run and prevent unnecessary suffering, while it would sometimes be wise to accept the help and tools that are out there when it's still a choice and not a must to use it.
I'm not bitter about my situation, I try to do everything possible to feel as well as possible and do so for many years to come. If that means using certain aid and items and medicines, then so be it! It's not a failure for me to use those things, I'm just proactive and learning and adapting while I can still choose how much or how little to use the things that helps me.
If I could just find a magical cure for the chronic insomnia, fatigue and the pain that prevents me from taking a regular job, I'd start working the same day I was cured! It's no fun not having the social life of a work place, but since I don't know if and when I get to sleep and what quality of sleep I get, and if my body allows me to be up much or not from one day to another, I wouldn't be a very good employee.
I think my call in life might be more towards socializing with other people living with a disability and get into issues about making public places more accessible for disabled and elderly people as that also helps able bodied people with young children. I also got to hear today that I have the gift of words and was suggested by more than one to consider going to schools and such to talk about living with a disability and still living life to the fullest (as much as it is possible). Kinda scary thought but I'll for sure keep it in mind and consider taking a course to get better at talking in front of a group of people.
To go to the fair today by the way required me to rest since Sunday evening to manage today, so the day I had at the disability fair wasn't an ordinary day, it was a planned outing that needed to be prepared for and I'm not expecting to be able to do many knots for the next few days. My body is literally screaming in several different octaves of agony since I got home, but I don't care because I've had an amazing day and I'm still having a big smile on my face when thinking back on the day! I wish I could go again tomorrow, but if I do I'd not dare to drive myself so dad would have to drive. I'm tired from today and have currently been awake for about 22 hours straight and didn't sleep much last night either. As much as I'd like to go again when I wake up, I doubt I'll be able to, so it's better I aim for a nice long (st)roll through town tomorrow just to get some daily exercise. I don't care how tired or achy I am when I wake up, I am going to go outside at least for a while!
Oh, and I stayed at the fair until they closed at 17:00 which meant I had been there for over 7 hours when I began to drive home, so it was indeed a long day. But oh what a fun day!
And that's how you can be chronically awesome ;)
I've been to the disability fair in Gothenburg and I had so much fun there and met so many nice people, learned a lot and for once, felt completely normal and "at home" since having a disability was the norm at the fair unless you were there as an assistant or someone working within the field of disability equipment or organizations for disabled people. I got so much great advice today and got in touch with several organizations for young people in my area, which means a great opportunity to make new friends and have a very nice social life where everyone is at the same level and everyone is attending within their own limits, no judging or no need to perform beyond your ability.
Also had a nice long chat with one of the assemblers working for Panthera Wheelchairs, that guy I chatted with is a paraplegic and he helped me remove the holders for the push handles on my Panthera S2 since I never use the push handles on my wheelchair anyways. Removing the handles and their holders has made my wheelchair about 1kg (~2.5lbs) lighter which does make a huge difference when lifting the wheelchair in and out of the car. Since there wasn't much people around at that time we had time to just chitchat for a while and we discussed how people often look upon wheelchairs- many consider it a failure to use a wheelchair unless being paralyzed, and they prefer stumbling around and being limited in their mobility, anything to avoid the wheelchair! Be it MS, Ehlers Danlos, ME/CFS or any other condition that might limit your ability to walk well. Both him and I agreed on that avoiding a wheelchair like that is really kinda stupid, being in a wheelchair to relieve legs is NOT a failure, instead, see it as a way of saving your legs for other things than walking around outdoors, in malls, at fairs and any other long distance walk that might cause a lot of pain and fatigue. For me, being in a wheelchair meant I could go to the fair today, and not just that, I also drove both ways, alone in the car! That was at least like 85 miles round trip and I haven't been able to drive that far on my own and be active for a whole day on top of it, since before my body started crashing rapidly.
For a long time, walking made me too achy and fatigued it wasn't safe for me to drive more than maybe 20 miles in one go. Now with the wheelchair, my legs are just there but not used when I'm in the wheelchair, which means they're relatively fresh when I get out of the chair and into the drivers seat and that gives me many more miles I can drive before my legs are getting too painful.
While in the wheelchair, I focus all my strength and stability to my upper body, and just let my lower back and legs rest, and that has actually made my arms and shoulders much stronger lately and my shoulders feel more stable, along with being able to cover a greater distance than I'd be able to if I was using my legs to walk.
The guy from Panthera could totally understand even though he has no use of his legs, but he does probably get to hear and see a lot of people who don't accept a wheelchair in their lives until they reach a point of no return when it comes to medical conditions causing the need for a wheelchair. If having an accident it's really not much choice when it comes to the wheelchair, but for us who has a choice... Me and the Panthera guy just couldn't understand why people wait so damn long before they just bite the lemon, request a wheelchair and get at least a part of their life and mobility back!
In the Panthera area of the fair they also showed the different models of wheelchairs they offer, I didn't take a test drive in any, but did try to lift the latest chair: Panthera X, the world's lightest wheelchair and OMG! The wheelchair frame weighs so little it's almost like lifting paper! It's made of carbon fiber and the whole frame weighs about 5-7lbs something without the back wheels on! Now that's one very light chair!
It was also pretty amazing to see how many wheelchair users at the fair were actually using a Panthera X since it's so new on the market still and significantly more pricey than the Panthera U2 Light or U2 or S2, I didn't expect the regions to cover the Panthera X that widely but seems they do! That was a very positive surprise.
I also talked with a representative from Lofric (Astra Zeneca's catheters) at the fair, started to talk since I had been dealing a lot with Lofric catheters while working in the warehouse so it was a kind of "work injury" to have a chat, and I just happened to mention how I tend to not feel my bladder and use the restroom way too little for my own good, it does happen far too often I wait for so long I get stabbing pain in my kidneys so it's not good. She had 19 years of experience of working with Lofric and she said it's definitely not good to have it that way as I have it, I have been considering the ER a few times when I just can't go and it's been maybe 12 hours since last restroom visit and having been drinking a lot of fluids. Said and done, since I know the theory inside out from having read the manual at work many times when being bored due to computer errors and whatnot, she sent a demo box of 5 with me and advised me to try it out at home and then contact my local clinic if I wish to continue with it. Not for every restroom visit obviously, but as a backup for when I don't feel my bladder or just can't go for too many hours, she said I'd feel a lot better if emptying every 3-4 hours in one way or another, it would be better for my bladder and kidneys in the long run. We only have one bladder and two kidneys and we need to treat them well! Seeing I have friends with severe retention and issues, and my issues are an early warning signal... I really don't mind self cath when needed if that means better health.
A lot of people really struggle to stay away from anything that could help them in the long run and prevent unnecessary suffering, while it would sometimes be wise to accept the help and tools that are out there when it's still a choice and not a must to use it.
I'm not bitter about my situation, I try to do everything possible to feel as well as possible and do so for many years to come. If that means using certain aid and items and medicines, then so be it! It's not a failure for me to use those things, I'm just proactive and learning and adapting while I can still choose how much or how little to use the things that helps me.
If I could just find a magical cure for the chronic insomnia, fatigue and the pain that prevents me from taking a regular job, I'd start working the same day I was cured! It's no fun not having the social life of a work place, but since I don't know if and when I get to sleep and what quality of sleep I get, and if my body allows me to be up much or not from one day to another, I wouldn't be a very good employee.
I think my call in life might be more towards socializing with other people living with a disability and get into issues about making public places more accessible for disabled and elderly people as that also helps able bodied people with young children. I also got to hear today that I have the gift of words and was suggested by more than one to consider going to schools and such to talk about living with a disability and still living life to the fullest (as much as it is possible). Kinda scary thought but I'll for sure keep it in mind and consider taking a course to get better at talking in front of a group of people.
To go to the fair today by the way required me to rest since Sunday evening to manage today, so the day I had at the disability fair wasn't an ordinary day, it was a planned outing that needed to be prepared for and I'm not expecting to be able to do many knots for the next few days. My body is literally screaming in several different octaves of agony since I got home, but I don't care because I've had an amazing day and I'm still having a big smile on my face when thinking back on the day! I wish I could go again tomorrow, but if I do I'd not dare to drive myself so dad would have to drive. I'm tired from today and have currently been awake for about 22 hours straight and didn't sleep much last night either. As much as I'd like to go again when I wake up, I doubt I'll be able to, so it's better I aim for a nice long (st)roll through town tomorrow just to get some daily exercise. I don't care how tired or achy I am when I wake up, I am going to go outside at least for a while!
Oh, and I stayed at the fair until they closed at 17:00 which meant I had been there for over 7 hours when I began to drive home, so it was indeed a long day. But oh what a fun day!
And that's how you can be chronically awesome ;)
Monday, April 15, 2013
Mum's 60th birthday!
Today my mum turned 60 and it's been a really nice day with seeing family and friends at the birthday party. Haven't seen most of them for a really long time now and wish there had been more time to chat with everyone but oh well, not much time when there's over 30 people and needing to help some with preparations between savory cake and birthday cake and such. I had made the birthday cakes, I normally make the cakes when me or my parents are having a birthday or we have layered cake for any other reason, and I always make the cakes from scratch! No cake mixes or ready made cakes from the supermarket!
The cakes turned out pretty nice both with taste and visual so I don't have to feel ashamed lol
Just wish I could have had a days break from this pesky allergy! It's so bad at the moment I was considering the ER both yesterday and today, but I'm a stubborn donkey so just trying to ride it out until tomorrow when I can call my clinic and get a prescription without sitting in an ER waiting room just to get some Betamethasone and/or a cortisone injection against the allergy. I can barely talk due to the allergy clogging up my nose completely along with restricting my airways in general. I sound like I'm having a cold from Jupiter! And think I might have just subluxed my hip from sneezing as I'm typing this, got a violent sneezing attack and as I'm sitting kinda cross legged with my laptop, the force from the sneeze made my right hip pop loudly but it must have popped right back in again because I'm not in too much pain now at least, usually comes later though...
Apart from the issues with my allergy today, I've had a really great day and it was great to see mum having such a great day too! Dad and I got her a new digital camera so she was snapping pictures all the time at the party to try it out, and she had both adoptive relatives, biological relatives and in-law relatives and some friends at the party, so I met all three sides of my family today, which is always nice :) And her friends are people I know very well and they've been a part of my life all my life so it was really nice to see them as well.
I was so happy my cousin closest to me in age could make it today as well! And I'm so happy and excited for her, she's got a car that she can drive! A car with hand controls, so now she's practicing for her license and she's really close to the tests! I'm crossing all my bendy bits for her to pass the tests so she can experience the wonderful freedom of being able to just jump into the car and go (as long as feeling one is a safe driver of course) instead of having to wait for taxi or have someone driving everywhere. Her disability is far worse than mine, loss of sensation in legs from nerve damage during surgeries so she can't drive with her feet, so I'm so happy she's finally able to drive thanks to hand controls! Saw her drive a bit today as she was practicing to and from the party, and from what I saw she's already a great driver and I think she'll pass the tests with flying colors!
Now to the big decision of the night: Do I watch The Hobbit tonight? Or do I wait until another night? I'm leaning towards tonight ;)
The cakes turned out pretty nice both with taste and visual so I don't have to feel ashamed lol
Just wish I could have had a days break from this pesky allergy! It's so bad at the moment I was considering the ER both yesterday and today, but I'm a stubborn donkey so just trying to ride it out until tomorrow when I can call my clinic and get a prescription without sitting in an ER waiting room just to get some Betamethasone and/or a cortisone injection against the allergy. I can barely talk due to the allergy clogging up my nose completely along with restricting my airways in general. I sound like I'm having a cold from Jupiter! And think I might have just subluxed my hip from sneezing as I'm typing this, got a violent sneezing attack and as I'm sitting kinda cross legged with my laptop, the force from the sneeze made my right hip pop loudly but it must have popped right back in again because I'm not in too much pain now at least, usually comes later though...
Apart from the issues with my allergy today, I've had a really great day and it was great to see mum having such a great day too! Dad and I got her a new digital camera so she was snapping pictures all the time at the party to try it out, and she had both adoptive relatives, biological relatives and in-law relatives and some friends at the party, so I met all three sides of my family today, which is always nice :) And her friends are people I know very well and they've been a part of my life all my life so it was really nice to see them as well.
I was so happy my cousin closest to me in age could make it today as well! And I'm so happy and excited for her, she's got a car that she can drive! A car with hand controls, so now she's practicing for her license and she's really close to the tests! I'm crossing all my bendy bits for her to pass the tests so she can experience the wonderful freedom of being able to just jump into the car and go (as long as feeling one is a safe driver of course) instead of having to wait for taxi or have someone driving everywhere. Her disability is far worse than mine, loss of sensation in legs from nerve damage during surgeries so she can't drive with her feet, so I'm so happy she's finally able to drive thanks to hand controls! Saw her drive a bit today as she was practicing to and from the party, and from what I saw she's already a great driver and I think she'll pass the tests with flying colors!
Now to the big decision of the night: Do I watch The Hobbit tonight? Or do I wait until another night? I'm leaning towards tonight ;)
Saturday, April 13, 2013
At war against the Alder...
Well, I found the name of the damn tree that's doing its best to kill me with its yellow sneezing powder aka pollen! It's Alder! And oh my do I suffer at the moment, my nose is a disaster, eyes are runny and my throat feels like I've been swallowing gravel (throat feels very irritated and almost as if I have cracks in it). I sound like I'm having a bad cold from hell, but it's 100% allergy!
The irony is that I've taken my allergy medicines for over a month already, and still getting this bad allergy now and the Alder levels are just low to moderate in my area, had it been high levels I'd probably be in hospital now. I will have to call my doctor on Monday and ask for a Betamethasone prescription to deal with this allergy, I should probably have called today but seeing Betamethasone and the likes aren't vitamins, especially not when you have a connective tissue disorder, I have wanted to wait as long as possible before hitting the strong steroids. Just hope I can get through this weekend without any trips to the urgent care or ER due to the allergy, yes I am that bad right now, heavy breathing and all.
I've had pollen allergy since my early teens and in the beginning my issues were very mild and it was manageable, sadly my allergy has just gotten worse with each year and since 2010 I have required steroids to manage the symptoms somewhat. Guess I'm only a couple of years away from having to consider the allergy shots to hopefully become less sensitive to the pollen I'm allergic to. Alder, Birch and grass are my worst ones but I have allergy issues throughout the whole season from late winter until they quit mowing the lawn in autumn...
I'd better try to get some sleep, I didn't get more than a short nap (less than 2 hours in total) last night, and have a busy weekend ahead. Baking the birthday cake when I wake up. I'm really feeling worse than shit at the moment but will try my best to get everything done that I need to do before Sunday, and then of course, try to get enough sleep tomorrow night so I'm feeling somewhat okay on Sunday.
The irony is that I've taken my allergy medicines for over a month already, and still getting this bad allergy now and the Alder levels are just low to moderate in my area, had it been high levels I'd probably be in hospital now. I will have to call my doctor on Monday and ask for a Betamethasone prescription to deal with this allergy, I should probably have called today but seeing Betamethasone and the likes aren't vitamins, especially not when you have a connective tissue disorder, I have wanted to wait as long as possible before hitting the strong steroids. Just hope I can get through this weekend without any trips to the urgent care or ER due to the allergy, yes I am that bad right now, heavy breathing and all.
I've had pollen allergy since my early teens and in the beginning my issues were very mild and it was manageable, sadly my allergy has just gotten worse with each year and since 2010 I have required steroids to manage the symptoms somewhat. Guess I'm only a couple of years away from having to consider the allergy shots to hopefully become less sensitive to the pollen I'm allergic to. Alder, Birch and grass are my worst ones but I have allergy issues throughout the whole season from late winter until they quit mowing the lawn in autumn...
I'd better try to get some sleep, I didn't get more than a short nap (less than 2 hours in total) last night, and have a busy weekend ahead. Baking the birthday cake when I wake up. I'm really feeling worse than shit at the moment but will try my best to get everything done that I need to do before Sunday, and then of course, try to get enough sleep tomorrow night so I'm feeling somewhat okay on Sunday.
Friday, April 12, 2013
The Alternative Cult and well meaning know-it-all's
I think most people living with a chronic condition has come across at least one person who belongs to the Alternative Cult, and by all means, that person might mean well, but for someone living with a chronic condition, especially genetic one, it can be utterly painful to get alternative methods shoved down our throats more violently than a paramedic putting a breathing tube into an unresponsive person who's stopped breathing. Anyone living with a chronic condition know his or her case of the condition better than anyone else does, it's his or her body and he or she know it best. Don't criticize our way of dealing with our condition!
If you have the same diagnose or a similar diagnose, by all means, share if you've found a way that helps for you and think it may benefit others, but don't start preaching it like some kind of new religion, it's bad enough we have to dodge The Gluten Free Church of Low Carb High Fat on a regular basis. While yes, altering our diets might make minor difference in our general well being, probably mostly through placebo, it does not cure our condition and unless you have a medical reason to entirely cut out gluten and/or carbohydrates, you might actually do more harm than good to yourself when looking long term. There's even been cases of stroke in Sweden that can be more or less directly blamed on LCHF diet so it's not as healthy as the LCHF followers says it is. Many living with connective tissue disorders also have bowel issues so altering a diet might send the person to a day at the loo, and we might have days of many loo visits anyways, even on a diet that our bowels does agree with.
If you do live with a condition yourself, don't criticize others for how they manage their condition! Even within the same condition people are affected differently and may handle things differently. If someone is taking heavy duty painkillers and you're not, that doesn't mean one of you is wrong, it means both are doing what's right for the individual, and due to idiots using heavy duty painkillers for recreational use, those medicines aren't taken lightly and not the first choice when needing a prescription painkiller. If someone is taking heavy duty painkillers as pain management, he or she takes that medicine for a damn good reason, so don't you dare telling that person it's wrong!
It's hard enough to accept that you need strong prescription medicines without being attacked by someone about it, and the same goes with using aid items such as bracing or mobility aid. It's hard enough to mentally accept those things without being personally attacked about it! People are not using bracing, crutches, canes or wheelchairs for fun or attention, it's used to get around better or even be the difference between being stuck at home or able to go outside.
Living with a chronic condition is tough both on body and mind, every day is a struggle both physically and emotionally and even doing the simplest of things healthy people take for granted can take an extreme toll physically on someone with a chronic condition. If the condition or disability becomes symptomatic or is acquired in adulthood, mentally accepting the new limits can be hard, and some might have to physically re-learn how to do things to not suffer as badly afterwards. The last thing we need is to have someone attacking us with alternative treatments as the only right way of treating our condition, or being told to see a psychologist or exercise more or whatever other comments we might hear far too often.
I know people who's been brought to tears by members of the Alternative Cult when the cult members are giving all sorts of advice that wasn't asked for or criticizing the person for how he or she is living his or her life with a chronic condition.
While it might be well meaning, it can feel like a personal attack, and it hurts, hurts a lot!
What you can do? Just be there, be supportive, but mainly just be there and don't push advice down anyone's throat. The person you know with a condition will ask if wanting advice and if asking, most usually turn to someone living with the same diagnoses to get some personal experience in the answers.
The absolutely worst thing anyone can do against someone with a chronic condition is to walk away or try to come up with all sorts of wonder cures. Unless you find a way to fix broken DNA, just shut up unless asked for advice, but do feel free to share something you think might be helpful, without shoving it down someone's throat, and let it be up to the individual to decide whether to try it or not.
There's no right or wrong in how you manage a chronic condition, there's only individual choices based on personal experience and symptoms of the individual.
Someone living with a chronic condition doesn't want pity, he or she only wants understanding and respect!
If you have the same diagnose or a similar diagnose, by all means, share if you've found a way that helps for you and think it may benefit others, but don't start preaching it like some kind of new religion, it's bad enough we have to dodge The Gluten Free Church of Low Carb High Fat on a regular basis. While yes, altering our diets might make minor difference in our general well being, probably mostly through placebo, it does not cure our condition and unless you have a medical reason to entirely cut out gluten and/or carbohydrates, you might actually do more harm than good to yourself when looking long term. There's even been cases of stroke in Sweden that can be more or less directly blamed on LCHF diet so it's not as healthy as the LCHF followers says it is. Many living with connective tissue disorders also have bowel issues so altering a diet might send the person to a day at the loo, and we might have days of many loo visits anyways, even on a diet that our bowels does agree with.
If you do live with a condition yourself, don't criticize others for how they manage their condition! Even within the same condition people are affected differently and may handle things differently. If someone is taking heavy duty painkillers and you're not, that doesn't mean one of you is wrong, it means both are doing what's right for the individual, and due to idiots using heavy duty painkillers for recreational use, those medicines aren't taken lightly and not the first choice when needing a prescription painkiller. If someone is taking heavy duty painkillers as pain management, he or she takes that medicine for a damn good reason, so don't you dare telling that person it's wrong!
It's hard enough to accept that you need strong prescription medicines without being attacked by someone about it, and the same goes with using aid items such as bracing or mobility aid. It's hard enough to mentally accept those things without being personally attacked about it! People are not using bracing, crutches, canes or wheelchairs for fun or attention, it's used to get around better or even be the difference between being stuck at home or able to go outside.
Living with a chronic condition is tough both on body and mind, every day is a struggle both physically and emotionally and even doing the simplest of things healthy people take for granted can take an extreme toll physically on someone with a chronic condition. If the condition or disability becomes symptomatic or is acquired in adulthood, mentally accepting the new limits can be hard, and some might have to physically re-learn how to do things to not suffer as badly afterwards. The last thing we need is to have someone attacking us with alternative treatments as the only right way of treating our condition, or being told to see a psychologist or exercise more or whatever other comments we might hear far too often.
I know people who's been brought to tears by members of the Alternative Cult when the cult members are giving all sorts of advice that wasn't asked for or criticizing the person for how he or she is living his or her life with a chronic condition.
While it might be well meaning, it can feel like a personal attack, and it hurts, hurts a lot!
What you can do? Just be there, be supportive, but mainly just be there and don't push advice down anyone's throat. The person you know with a condition will ask if wanting advice and if asking, most usually turn to someone living with the same diagnoses to get some personal experience in the answers.
The absolutely worst thing anyone can do against someone with a chronic condition is to walk away or try to come up with all sorts of wonder cures. Unless you find a way to fix broken DNA, just shut up unless asked for advice, but do feel free to share something you think might be helpful, without shoving it down someone's throat, and let it be up to the individual to decide whether to try it or not.
There's no right or wrong in how you manage a chronic condition, there's only individual choices based on personal experience and symptoms of the individual.
Someone living with a chronic condition doesn't want pity, he or she only wants understanding and respect!
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!
Tuesday, April 9, 2013
Life of an insomniac
Another night, a night with no sleep of course. It's yet again the wee hours of the morning and here I am, unable to fall asleep! I've lost count on how many nights just this year that I've still been awake by 5am or after, it's currently 5:30am as I'm typing this, go figure, my mum is getting up about this time to go to work and I'm not even asleep yet.
I'm tired of being tired and even more tired of never getting to sleep at normal hours, maybe I should just move to America so I'd fall asleep at normal hours, but then most likely insomnia would catch up with me and I'd be awake all night again having to go further and further west until coming back home again and still not sleeping at night.
I should be sleeping like a stone now, had a busy day and felt physically drained when I came home, but of course I can't sleep, my mind is wide awake and can't shut the fuck up! Thoughts are all over the place, spinning like a washing machine in spin cycle.
I have zopiclone at home, but don't want to take it because of the risk of getting stuck on it. I know the risk is extremely low for me since I never get addicted to anything but I still prefer real sleep instead of pill sleep. I do however take propiomazine in the evenings but it only helps me sleep better if and when I fall asleep.
Have spent the last few hours listening to relaxing classical music but it hasn't helped me fall asleep. My mind is still buzzing with random thoughts that are completely irrelevant at this time of the morning or night or whatever you want to call it.
It's getting light outside now, soon it will be full daylight which of course will make the quality of sleep worse as one rest best in darkness and there's more going on outside and around in daytime which also makes quality of sleep lower...
I really want to sleep now! Be it pill sleep if I must...
Feeling foggy from fatigue but yeah... I should put phone down and see if I'm more lucky sleep wise now than before...
I'm tired of being tired and even more tired of never getting to sleep at normal hours, maybe I should just move to America so I'd fall asleep at normal hours, but then most likely insomnia would catch up with me and I'd be awake all night again having to go further and further west until coming back home again and still not sleeping at night.
I should be sleeping like a stone now, had a busy day and felt physically drained when I came home, but of course I can't sleep, my mind is wide awake and can't shut the fuck up! Thoughts are all over the place, spinning like a washing machine in spin cycle.
I have zopiclone at home, but don't want to take it because of the risk of getting stuck on it. I know the risk is extremely low for me since I never get addicted to anything but I still prefer real sleep instead of pill sleep. I do however take propiomazine in the evenings but it only helps me sleep better if and when I fall asleep.
Have spent the last few hours listening to relaxing classical music but it hasn't helped me fall asleep. My mind is still buzzing with random thoughts that are completely irrelevant at this time of the morning or night or whatever you want to call it.
It's getting light outside now, soon it will be full daylight which of course will make the quality of sleep worse as one rest best in darkness and there's more going on outside and around in daytime which also makes quality of sleep lower...
I really want to sleep now! Be it pill sleep if I must...
Feeling foggy from fatigue but yeah... I should put phone down and see if I'm more lucky sleep wise now than before...
Monday, April 8, 2013
Quite the week ahead
Facing a pretty busy week this coming week. Going to drive mum to her hand surgeon appointment tomorrow, mum has a trigger finger (which is funny seeing she's never even held a toy gun) and I told her months ago it was trigger finger, it was later confirmed by my hand occupational therapist when I told her about my mum's finger, and the diagnose was then later confirmed in person by the company doctor who sent the referral to see the hand surgeon.
I've told mum all along (and my occupational therapist agrees) that mum needs to see an occupational therapist more than anything else, and she needs a night splint made for her, similar to the splints I wear at night. Think I'd better go with her to see the surgeon even, and not just wait in the waiting room as I know more about these things than mum does.
After the appointment, mum and I will go shopping a bit in town, mum is turning 60 on Sunday so we're going to buy some things for the party, and just generally have a look around and be out and about a bit. I'm going to be the pastry chef for the party so I'm planning on how to decorate the cake which will be a big rectangular one since it's easier to handle than several round ones and we'll be maybe around 20-30 people at the party. We know what to put between the layers of the cake, but still drawing the decorations in my mind, and I'm also making plans for a lactose free or even dairy free cake for my mum's cousin if she comes too, she's allergic but we don't know if it's just lactose or if it's milk protein so if she's coming I'm making a special cake for her with either lactose free cream or soy based cream depending on if it's lactose or the protein she's allergic too. I'm also planning for a sugar free cake option in case my aunt's boyfriend is coming as he's an insulin dependent type two diabetic. Will ask beforehand though if he wants a sugar free option or if he's fine with the regular, if he's coming.
When having guests with special needs for medical reasons, I always make sure there's something they can have so they don't feel forgotten.
Before the birthday cake, there will be a savory cake, you cut it like a regular cake but it's like a big sandwich with various filling and topping. Again there, thinking up a lactose or dairy free option in case it's needed. The big savory sandwich cakes will be ordered from a bakery but the lactose or dairy free will be prepared at home, and the birthday cake will be made from scratch at home.
I normally end up helping out a lot with cooking and baking when my parents are having guests for one reason or another, it's fun and I'm pretty good at baking and cooking, and with me doing that part, it gives mum more time to plan and prepare other things.
Dad is still coughing a lot from the cold he had three weeks ago now, so mum and I are pulling the load so he can rest up more before the weekend. Told him today that he should call the clinic in the morning because prescription free cough medicines aren't helping for him, he needs something better. He's coughing so much he doesn't get to sleep much at all at night and the sleep deprivation probably slows down the recovery. I often find I recover from a bug faster if I'm less symptomatic and kinda sleep it off.
Looking forwards to tomorrow's trip into town and the weekend, will be fun to meet many of my relatives and family friends at mum's birthday party.
Also really looking forward to Wednesday as that means another evening of talking with my Chronically Awesome friends!
Oh, and on another note, I'm getting really stable in my wheelchair now so will start bumping down curbs on the back wheels any day now! I can already do it on low enough curbs where the anti tip wheels doesn't get in the way, but most of the time they do get in the way so taking them off real soon. My occupational therapist won't like it, but heck, once you learn how to bike, you take off the small support wheels, I consider wheelchair and anti tip wheels being the same or very similar as learning to bike- once you learn to be balanced and not depend on the anti tip wheels to catch you, there's no use having them on as long as you have enough stability and balance in your body. I've been on the anti tip wheels maybe twice in the past 2.5 weeks and only relied on them on the first day in my wheelchair really. Now I can have a 2L bottle of Cola in a backpack on the backrest and wheel through town freely without tipping backwards uncontrolled, I'm able to jump up a curb without stopping etc, with said cola bottle in the backpack, and having anything "heavy" on the backrest makes the wheelchair more tippy than its normal, and still, not even then do I "need" the anti tip wheels :)
Oh well, long post, busy tomorrow ahead and just past 4am so I should try to kick some insomnia butt and catch some sleep!
I've told mum all along (and my occupational therapist agrees) that mum needs to see an occupational therapist more than anything else, and she needs a night splint made for her, similar to the splints I wear at night. Think I'd better go with her to see the surgeon even, and not just wait in the waiting room as I know more about these things than mum does.
After the appointment, mum and I will go shopping a bit in town, mum is turning 60 on Sunday so we're going to buy some things for the party, and just generally have a look around and be out and about a bit. I'm going to be the pastry chef for the party so I'm planning on how to decorate the cake which will be a big rectangular one since it's easier to handle than several round ones and we'll be maybe around 20-30 people at the party. We know what to put between the layers of the cake, but still drawing the decorations in my mind, and I'm also making plans for a lactose free or even dairy free cake for my mum's cousin if she comes too, she's allergic but we don't know if it's just lactose or if it's milk protein so if she's coming I'm making a special cake for her with either lactose free cream or soy based cream depending on if it's lactose or the protein she's allergic too. I'm also planning for a sugar free cake option in case my aunt's boyfriend is coming as he's an insulin dependent type two diabetic. Will ask beforehand though if he wants a sugar free option or if he's fine with the regular, if he's coming.
When having guests with special needs for medical reasons, I always make sure there's something they can have so they don't feel forgotten.
Before the birthday cake, there will be a savory cake, you cut it like a regular cake but it's like a big sandwich with various filling and topping. Again there, thinking up a lactose or dairy free option in case it's needed. The big savory sandwich cakes will be ordered from a bakery but the lactose or dairy free will be prepared at home, and the birthday cake will be made from scratch at home.
I normally end up helping out a lot with cooking and baking when my parents are having guests for one reason or another, it's fun and I'm pretty good at baking and cooking, and with me doing that part, it gives mum more time to plan and prepare other things.
Dad is still coughing a lot from the cold he had three weeks ago now, so mum and I are pulling the load so he can rest up more before the weekend. Told him today that he should call the clinic in the morning because prescription free cough medicines aren't helping for him, he needs something better. He's coughing so much he doesn't get to sleep much at all at night and the sleep deprivation probably slows down the recovery. I often find I recover from a bug faster if I'm less symptomatic and kinda sleep it off.
Looking forwards to tomorrow's trip into town and the weekend, will be fun to meet many of my relatives and family friends at mum's birthday party.
Also really looking forward to Wednesday as that means another evening of talking with my Chronically Awesome friends!
Oh, and on another note, I'm getting really stable in my wheelchair now so will start bumping down curbs on the back wheels any day now! I can already do it on low enough curbs where the anti tip wheels doesn't get in the way, but most of the time they do get in the way so taking them off real soon. My occupational therapist won't like it, but heck, once you learn how to bike, you take off the small support wheels, I consider wheelchair and anti tip wheels being the same or very similar as learning to bike- once you learn to be balanced and not depend on the anti tip wheels to catch you, there's no use having them on as long as you have enough stability and balance in your body. I've been on the anti tip wheels maybe twice in the past 2.5 weeks and only relied on them on the first day in my wheelchair really. Now I can have a 2L bottle of Cola in a backpack on the backrest and wheel through town freely without tipping backwards uncontrolled, I'm able to jump up a curb without stopping etc, with said cola bottle in the backpack, and having anything "heavy" on the backrest makes the wheelchair more tippy than its normal, and still, not even then do I "need" the anti tip wheels :)
Oh well, long post, busy tomorrow ahead and just past 4am so I should try to kick some insomnia butt and catch some sleep!
Friday, April 5, 2013
The importance of letting others know
With some conditions or medications wearing a dog tag or other kind of medical alert is a must or at least strongly recommended, a small piece of jewelry with that information on can save your life and make you receive the right treatment faster.
What many with a condition don't realize is that even if you're not taking certain medicines or being at high risk due to your medical condition, it can still be a good idea to wear something to let others know what is wrong with you, just in case you'd ever need the assistance from other people or medical staff.
I have been considering getting some kind of alert item for some time now due to my EDS and the fact I've been close to passing out a handful or more times from it.
The other day I finally ordered a small leather bracelet with the text EDS-TYP3 on a metal plate on it, it's small, discrete, looks like any kind of custom made bracelet when you just see it at a distance, but if you take a closer look at it you see the text on it.
Should I ever need medical attention and not being able to communicate myself, this bracelet means someone can look up my condition and know faster how to treat it, or at least be alerted that I have a condition that may require different care than your average Joe does.
I got this bracelet purely for my own safety and as a small insurance in case of emergency.
I know a lot of people don't want to wear medical alert items because it's too visible but that's really kinda stupid if you have a condition that requires different care than a person at full health, in case something happens to you.
I will eventually order a more formal medical alert bracelet with the alert icon on and more information, but this bracelet I got now is at least a start, a something that will make me feel safer in a discrete way when I'm out and about on my own, especially if I'm out of town where people don't know me personally.
The picture is a close up of my text, the bracelet itself is just a simple black leather bracelet and the style of the whole thing is the kind of bracelet more or less everyone wears now with custom text on.
What many with a condition don't realize is that even if you're not taking certain medicines or being at high risk due to your medical condition, it can still be a good idea to wear something to let others know what is wrong with you, just in case you'd ever need the assistance from other people or medical staff.
I have been considering getting some kind of alert item for some time now due to my EDS and the fact I've been close to passing out a handful or more times from it.
The other day I finally ordered a small leather bracelet with the text EDS-TYP3 on a metal plate on it, it's small, discrete, looks like any kind of custom made bracelet when you just see it at a distance, but if you take a closer look at it you see the text on it.
Should I ever need medical attention and not being able to communicate myself, this bracelet means someone can look up my condition and know faster how to treat it, or at least be alerted that I have a condition that may require different care than your average Joe does.
I got this bracelet purely for my own safety and as a small insurance in case of emergency.
I know a lot of people don't want to wear medical alert items because it's too visible but that's really kinda stupid if you have a condition that requires different care than a person at full health, in case something happens to you.
I will eventually order a more formal medical alert bracelet with the alert icon on and more information, but this bracelet I got now is at least a start, a something that will make me feel safer in a discrete way when I'm out and about on my own, especially if I'm out of town where people don't know me personally.
The picture is a close up of my text, the bracelet itself is just a simple black leather bracelet and the style of the whole thing is the kind of bracelet more or less everyone wears now with custom text on.
Seeing music
Sometimes music can be very full of scenery and local attitude and you can actually see the places where it comes from. Now with something like Asian music or Spanish/South American music it's not hard to place on the map, but American music can be harder to place on the map unless it's country music which for the most part comes from a specific area.
The song I'm talking about is not area specific when it comes to music style, but I just knew where it was from before I looked it up on Wikipedia because I've been to the same city. I'm talking about AWOLNATION's song Sail! When I hear it, I see the broad boulevards, low buildings (for those who doesn't know, only the city core of LA has proper skyscrapers) and the big, often pimped cars of Los Angeles and I feel the attitude of the city in the music and remember cruising back and forth on Sunset Boulevard and other boulevards and with my own eyes seeing the things I see in the music now. I was in Los Angeles in September 2003 so it's almost 10 years ago now, but I still remember so many things from when I was there, even details of places and routes we went.
There's just something about the beats and attitude of the song that shouts Los Angeles so loud it can be heard all the way to Sweden!
I wasn't at all surprised when I looked up AWOLNATION on Wikipedia and saw they're from Los Angeles.
I often see music by the way, always have :) A lot of music has a visual story to tell, if you just close your eyes and see it.
The song I'm talking about is not area specific when it comes to music style, but I just knew where it was from before I looked it up on Wikipedia because I've been to the same city. I'm talking about AWOLNATION's song Sail! When I hear it, I see the broad boulevards, low buildings (for those who doesn't know, only the city core of LA has proper skyscrapers) and the big, often pimped cars of Los Angeles and I feel the attitude of the city in the music and remember cruising back and forth on Sunset Boulevard and other boulevards and with my own eyes seeing the things I see in the music now. I was in Los Angeles in September 2003 so it's almost 10 years ago now, but I still remember so many things from when I was there, even details of places and routes we went.
There's just something about the beats and attitude of the song that shouts Los Angeles so loud it can be heard all the way to Sweden!
I wasn't at all surprised when I looked up AWOLNATION on Wikipedia and saw they're from Los Angeles.
I often see music by the way, always have :) A lot of music has a visual story to tell, if you just close your eyes and see it.
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 ;)
Tuesday, April 2, 2013
Battling fatigue
Apart from the pain caused by EDS, fatigue is another constant battle in my life. I never feel well rested and even minor tasks can make me feel very fatigued, especially if already having a bad day.
Today hasn't been the best of days. Painsomnia kept me awake until about 6 this morning and my sleep once I fell asleep was far from good quality sleep, which sadly has been the case for several days now. And when I woke up today, something felt really wrong high up in my thoracic spine and left shoulder blade, a lot of pain and just feeling wrong. It's still very painful but at least I can move my left arm better now.
I had to run a couple of errands this afternoon and before I went out, I felt a bit odd and checked my resting heart rate which at that time was at 93, and I had been resting for quite long at the time, when I went to the bathroom shortly after my legs were just shaking and I began feeling as if I was about to pass out and for a while I did consider calling mum to ask her to go with me, but decided that I'd be fine thanks to having the wheelchair and having my phone with me.
I got to my local clinic to pick up a couple of documents and then needed to pick up some medicines at the pharmacy, when it was my turn at the pharmacy my pharmacist said I looked very tired so I told her I nearly passed out just before leaving home. She kept talking with me for a bit as the pharmacy wasn't busy at the time and by the time I had gotten my medicines, she said I had more color in my face again and I was feeling a tad bit better by the time I left the pharmacy. Been feeling very tired and fatigued since I got back home though, but at least I can just rest as much as I need when I'm at home.
I'm fighting chronic fatigue constantly, but due to poor sleep quality and painsomnia for the past few days, mostly caused by pain from the hormone coil, the fatigue has been worse than usual and the only reason I'm able to go outside on my own at the moment is because I'm in my wheelchair outside. Had I not had the wheelchair now, dad would have had to drive me today, I was in no fit state to drive myself nor would it have been safe to walk.
Chronic fatigue is a very common side issue with EDS, many of us with EDS also suffer from chronic fatigue that may at times be close to paralyzing.
Sometimes the fatigue is what's most difficult to deal with when living with EDS, pain can be managed and joints can be put back in place or kept in place by bracing, but the fatigue... It doesn't matter how much you rest or how much you sleep, the fatigue is there anyways and some days are worse than others.
Feeling the ramble head hitting me now, along with a not very nice headache. Kinda feeling again as if I'm about to pass out too...
Today hasn't been the best of days. Painsomnia kept me awake until about 6 this morning and my sleep once I fell asleep was far from good quality sleep, which sadly has been the case for several days now. And when I woke up today, something felt really wrong high up in my thoracic spine and left shoulder blade, a lot of pain and just feeling wrong. It's still very painful but at least I can move my left arm better now.
I had to run a couple of errands this afternoon and before I went out, I felt a bit odd and checked my resting heart rate which at that time was at 93, and I had been resting for quite long at the time, when I went to the bathroom shortly after my legs were just shaking and I began feeling as if I was about to pass out and for a while I did consider calling mum to ask her to go with me, but decided that I'd be fine thanks to having the wheelchair and having my phone with me.
I got to my local clinic to pick up a couple of documents and then needed to pick up some medicines at the pharmacy, when it was my turn at the pharmacy my pharmacist said I looked very tired so I told her I nearly passed out just before leaving home. She kept talking with me for a bit as the pharmacy wasn't busy at the time and by the time I had gotten my medicines, she said I had more color in my face again and I was feeling a tad bit better by the time I left the pharmacy. Been feeling very tired and fatigued since I got back home though, but at least I can just rest as much as I need when I'm at home.
I'm fighting chronic fatigue constantly, but due to poor sleep quality and painsomnia for the past few days, mostly caused by pain from the hormone coil, the fatigue has been worse than usual and the only reason I'm able to go outside on my own at the moment is because I'm in my wheelchair outside. Had I not had the wheelchair now, dad would have had to drive me today, I was in no fit state to drive myself nor would it have been safe to walk.
Chronic fatigue is a very common side issue with EDS, many of us with EDS also suffer from chronic fatigue that may at times be close to paralyzing.
Sometimes the fatigue is what's most difficult to deal with when living with EDS, pain can be managed and joints can be put back in place or kept in place by bracing, but the fatigue... It doesn't matter how much you rest or how much you sleep, the fatigue is there anyways and some days are worse than others.
Feeling the ramble head hitting me now, along with a not very nice headache. Kinda feeling again as if I'm about to pass out too...
My personal experience with the Mirena hormone coil
I had this coil fitted on February 18th and I was having a very minor bleeding the days before, as in having period starting, and after I had the coil fitted, I bled for a month, I've had maybe a week without bleeding and now I'm bleeding AGAIN! I'm also still suffering with severe stabbing pain in my lower abdomen and I know it's the coil causing it because I didn't have that kind of pain before it was fitted, except for when I had period cramps from natural reasons.
My experience with this coil this far is that this coil is nothing but a medieval torturing device that I wouldn't recommend anyone with EDS, based on my own experience with it and from what I've heard others with EDS say about it. Everything the gynecologists has said to me about this coil has been utter bullshit! The coil hasn't helped me a fucking shit and has made me bleed more and longer than I did on Cerazette minipills, along with being in an intolerable amount of pain from the coil, I have enough pain from the EDS as it is, thank you very much!
My experience this far in with the coil has only been everything I feared it would be: A life with sanitary pads 24/7 and PAIN PAIN PAIN!
I've been asked to give it until May before I make the final verdict about the coil, but as I told the gynecologist last week who asked me to give it until May: I seriously don't know if I'll last that long with this medieval torture device in me!
I seriously have enough pain from just the EDS, it's enough with joints and surrounding muscles hurting as if I've been continuously hit by a train. I have more than enough pain to deal with without this extra pain coming from a foreign object in me!
I'm not having this device for contraceptive reasons, but if I did, it would work pretty damn well because I don't even want to think about sex when having this much pain in my lower abdomen, and I'd definitely not want to have sex while having period.
I'm having this device to control my periods, and it's doing absolutely nothing else than making me bleed and making me want to just rip everything out once and for all!
For me having the physical ability (as in having my female organs and periods) to carry a baby serves absolutely no purpose to me as I'm never going to have biological children, partly because of my own physical condition as it is already, and partly because I don't want to risk having a child inheriting EDS from me and maybe be more severely affected already from a young age. Taking that into consideration, I'd probably be better off with an ablation or even a hysterectomy if the coil doesn't settle soon and completely removes my periods. I do not need the ability to become pregnant, nor do I want it! I'd gladly give that ability to someone who doesn't have it but want children.
I'd better take some OxyNorm now, the coil is very painful tonight, like it wasn't supposed to be, and of course, keeping me awake with a wonderful painsomnia.
Women: Don't get fooled to try this damned coil unless you want to try it! I regret having it fitted and in my case, several gynecologists have been WRONG!
My experience with this coil this far is that this coil is nothing but a medieval torturing device that I wouldn't recommend anyone with EDS, based on my own experience with it and from what I've heard others with EDS say about it. Everything the gynecologists has said to me about this coil has been utter bullshit! The coil hasn't helped me a fucking shit and has made me bleed more and longer than I did on Cerazette minipills, along with being in an intolerable amount of pain from the coil, I have enough pain from the EDS as it is, thank you very much!
My experience this far in with the coil has only been everything I feared it would be: A life with sanitary pads 24/7 and PAIN PAIN PAIN!
I've been asked to give it until May before I make the final verdict about the coil, but as I told the gynecologist last week who asked me to give it until May: I seriously don't know if I'll last that long with this medieval torture device in me!
I seriously have enough pain from just the EDS, it's enough with joints and surrounding muscles hurting as if I've been continuously hit by a train. I have more than enough pain to deal with without this extra pain coming from a foreign object in me!
I'm not having this device for contraceptive reasons, but if I did, it would work pretty damn well because I don't even want to think about sex when having this much pain in my lower abdomen, and I'd definitely not want to have sex while having period.
I'm having this device to control my periods, and it's doing absolutely nothing else than making me bleed and making me want to just rip everything out once and for all!
For me having the physical ability (as in having my female organs and periods) to carry a baby serves absolutely no purpose to me as I'm never going to have biological children, partly because of my own physical condition as it is already, and partly because I don't want to risk having a child inheriting EDS from me and maybe be more severely affected already from a young age. Taking that into consideration, I'd probably be better off with an ablation or even a hysterectomy if the coil doesn't settle soon and completely removes my periods. I do not need the ability to become pregnant, nor do I want it! I'd gladly give that ability to someone who doesn't have it but want children.
I'd better take some OxyNorm now, the coil is very painful tonight, like it wasn't supposed to be, and of course, keeping me awake with a wonderful painsomnia.
Women: Don't get fooled to try this damned coil unless you want to try it! I regret having it fitted and in my case, several gynecologists have been WRONG!
Monday, April 1, 2013
EDS and brains
It's not uncommon for someone with EDS to have an IQ score above average or even at genius level, and yet we often struggle to remember even basic things, may have issues to focus on something for an extended period of time and try to stay clear of the dreaded fog. I used to have close to photo memory in the past, but since pain started affecting me more and more, my memory has gotten worse and so has my ability to focus, and it feels like my mind is taking over where my body has fallen behind due to my physical disability from the EDS. I've always been a ramble head, they say EDS'ers can have hypermobile body and mind, that's definitely true for me!
All my life have I had issues with insomnia, some periods worse than others and if it's not pain keeping me awake it's my brain just shooting thoughts all over the place, feeling like a washing machine of thoughts doing the spin cycle.
As for my memory. I can remember things I don't need to remember at all, but if I need to remember something, say, if I'm studying something. The dreaded Teflon memory strikes and even silence can distract me and make me forget what I just read, or something else is more interesting, like a bird in a tree outside and whatnot.
In EDS this is apparently not uncommon, and many of us has traits of ADD, ADHD, Asperger, OCD or something else like it, and quite many even have one of the above mentioned diagnoses or even more than one. I have traits of Asperger but not enough to seek a diagnose for it or anything, it's just some minor traits and when I found out, it did explain a fair bit, I also have some traits of OCD, but again, only some traits and not enough for it to affect my everyday life or anything, it's just there, and as long as I do what works for me, I don't notice. While I do admit it's annoying when things HAS to be a certain way and I go nuts if they aren't! Thankfully, those things that has to be a certain way aren't too many things, so it's pretty low maintenance.
The one thing I find the most annoying since my EDS began to really show its ugly face is that as my physical ability deteriorates, my mind gets more busy with nonsense and I find it even harder to relax both physically and mentally because my brain just doesn't shut up and my body is always tense to keep myself together. It's so annoying, some days I just want to scream! Then on top of it is the chronic pain and fatigue that comes with the EDS as well... The more pain I'm in, the more difficult it is to get to the point of something, and right now it feels like the ramble head is taking over so time to call it a post.
The image below pretty much sums it up!
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