Since there are several types of Ehlers Danlos Syndrome and everyone living with the diagnose may have varying symptoms and varying severity of their symptoms, I can only speak for myself for the most part, but there's also some general things that many with EDS suffer from. I don't think I've shared before how EDS is affecting me so thought I'd do that now while having just pulled an all nighter due to painsomnia from severe back pain that nearly had me going to the ER some hours ago.
I have as I've mentioned before, the hypermobility type of EDS. The hypermobility type is generally known to be the most painful but least dangerous type of EDS.
Some may consider me a relatively mild case, others may say I'm hit hard. It all depends on which symptoms you look at.
People with the hypermobility type EDS tends to dislocate and/or sublux and have hypermobility in pretty much every joint. While I'm relatively spared from random full dislocations- I've probably had a few but only one I know for sure and had to force back in place, I do have a lot of subluxations or partial dislocations as they're also known as, and that happens many times in a day, every day and even in my sleep. The first thing I do when I wake up is to sort of go through my body to feel if everything is in place, and pop a few joints back in place before I get out of bed.
Every step I take has to be with full attention from me or my ankles may just fold under me or a knee flop backwards with such force that there's a sickening crunch in the joint with instant severe pain as a result. To hopefully make it easier to read, I'll write a list of my personal experience of EDS.
- Hypermobility: Generally all over, including all the small joints in fingers and toes. But I'm not a contortionist like some would expect from EDS.
- Dislocations and subluxations: Little or no trauma needed. Just to mention some frequent ones, my ankles can sublux in mid step and my thumbs can sublux from just typing on a touch screen and something in my wrist sublux or dislocates even when my wrists are immobilized in custom made splints.
- Muscle fatigue: Something has to try to keep my joints in place, and what my ligaments doesn't do, my muscles has to compensate for. My muscles may work as much as 300% more than in a normal person, and that's just when doing such basic things as standing up. My muscles can't even fully relax in bed!
- Debilitating pain: Joint pain from hyperextension wearing and tearing more on a joint than if said joint was always within normal range. Muscle pain from always compensating for the hypermobilty, plus pain from any acute things such as a bad sublux or similar. Extreme "growing pains" when younger.
- Chronic back pain: From suspected cervical instability, locked discs and vertebrae and discs slipping around. The full cause is yet to be found but have pain from skull base down to tailbone and extra bad in some areas. Have reason to suspect bulging discs may be behind some too. Waiting for proper scans.
- Insomnia: I don't know if and when I get to sleep, or what quality of sleep I'm getting, I often wake up many times during my sleep for various reasons and sometimes the insomnia is painsomnia (which is the case as I'm typing this, it's 8:45am and I haven't slept yet)
- Headaces: General headaches, spinal headaches (feel them coming from neck, might be cranio cervical migraines), migraines. I have headaches pretty much all the time but only notice the bad ones due to being so used to headaches.
- Heavy periods: Unless I am on hormone treatment, I will bleed through anything, several times per day (if I don't change every 1-3 hours) on the worst days of my periods that also lasts longer than normal. My periods can also be very painful.
- Acid reflux and heartburn: Something I've had to deal with since a very young age and still get random flares with, sometimes without being able to tell how or why.
- IBS like issues: I can be constipated on prunes and loose on Morphine when it should be the opposite, and my intestines pretty much have their own life and usually behave okay if I avoid certain things. My worst IBS symptom is cramps.
- Stomach shutting down: I don't have gastroparesis like some with EDS has, but at times my stomach just goes numb, no feeling of hunger or anything and no sounds at all, and I tend to have pretty low appetite to begin with.
- Slight bladder issues: Sometimes can't pee, sometimes can't feel my bladder and only go to the bathroom twice in a 24h period despite drinking a lot of fluid and sometimes I don't empty my bladder completely when I go.
- Broken body thermostat: I can't always tell if it's warm or cold or I sweat when it's cold and freeze when it's warm.
- Dizzy spells: Dizziness that has been very close to having me pass out many times, can happen completely randomly or when my body thinks it's too warm (even when it may not be warm at all).
- Heart rate jumping: It can jump from about 75bpm to 130bpm from just standing up even if I stand up slowly. Also frequently have resting heart rate of about 90bpm. Has not been properly investigated.
- Soft velvety skin: My skin is only mildly elastic but very soft and my hands shows no signs of many years of physical jobs.
- Skin that blisters easily: I can have my feet literally be eaten by shoes, even Crocs can give me blisters.
- Scars: I don't have any surgery scars, but some scars from minor injuries are wider than the injury and with very thin skin. Also have keloid scars from very minor things.
- Striae: Stretchmarks that are wide and almost kinda purple, stretchmarks in places where people don't normally have stretchmarks regardless of size.
- Local anesthesia: Works poorly and I learned that the hard way when having milk teeth taken out as a child.
- Slightly high and narrow palate and dental crowding: There wasn't nearly enough space for all my teeth, have had four adult teeth taken out and wore braces in my teens.
- Medicine allergies: Pretty severe reactions to a couple of different antibiotics, less severe reactions to a couple of other kinds.
- Resistance to painkillers: My pain is impossible to treat with anything weaker than morphine. And I can get several kinds of heavy duty pain meds at the same time and still not be pain free and read a book while the pain is manageable. I've never been high from any kind of pain medicine, even before my pain was severe enough for needing morphine strength medicines daily.
I may have forgotten some now, but the things that really affects my quality of life and how I live is the debilitating pain and fatigue. Even doing very minor things that people without EDS take for granted, can be very tiring for me or even send me to bed, or cause a pain flare that I can barely handle at home. The pain in my back, hips, knees and ankles is what's affecting my mobility the most and the reason I'm now using a wheelchair. I can only stand up for a few minutes before the pain gets so bad I just want to scream so obviously such basic things as standing in line in a supermarket can be enough to send me to bed in excruciating pain after, because if I've been walking in the supermarket, that adds up to the standing too. My walking ability has decreased rapidly from being able to walk several miles in a day less than a year ago, to now only rarely manage to walk further than to my parents before the pain and fatigue hits so I may need to rest for hours after. In the wheelchair I can be out and about much more and suffering a lot less afterwards and not even need to rest when I get home, or only need to rest for a short while.
The pain and fatigue and the big need to be able to rest a lot makes it difficult to live a completely normal life or have a job. I don't know how I feel when I wake up in the morning, if I've even slept, or how my day will be.
Some people manage to work with EDS, but a lot of people with EDS end up having to file for disability at a young age or at least long before they'd retire due to age.
When I last worked, I wasn't as affected yet by my EDS, it had only just started to show its ugly face, and I had no life outside of work. I worked, and I rested and I rested and I worked. Had no energy for social life outside of home or activities. That wasn't a good quality of life. My quality of life isn't great now either, but at least I'm able to take each day as it comes and do the best of the day that I get each day. Sadly I belong to the group of EDS'ers who needs to file for disability at a young age, and I'm just about to begin that process. Not because I want to, but because I see no other option.
Things may have looked different had I been diagnosed at a younger age, at a time before I ruined my body with physically demanding jobs. No one will ever know that. I was diagnosed just before I was 27, last year. My situation might have been the same even if I had been working in an office instead of warehouse...
EDS isn't always taken seriously. Some think it's just some hypermobility. It's so much more than that! It's not uncommon to have severe side disorders as well, such as POTS or Chiari malformation. Some of my symptoms may be POTS but it hasn't been investigated enough. I don't have Chiari malformation though, but it is not uncommon to have it with EDS due to the weakened connective tissue.
EDS is a life changing diagnose, you can learn to live with the symptoms but it's not always you have the possibility to live like you did before you became symptomatic and got diagnosed (if you're like me and not getting a rapid deterioration and diagnose until adulthood).
It's 9am, I should take my morning medicine, some more rapid and try to sleep, I'm still in a lot of pain... Just wanted to share my little list in the hopes that it may help someone out there who is in a diagnostic limbo or feeling like a lonely medical zebra.
Zebra hugs <3 p="">
Sunday, March 31, 2013
Friday, March 29, 2013
Pain management, a little informative rant.
It's often a hot topic within the chronic pain communities whether you should take painkillers or not and what rights you have as a patient when you see your doctor.
To be honest, whether you take medicine or not for your pain is a totally personal decision and if you decide that taking medicine is the best for you, that is your choice just as much as it is someone's choice to not medicate. Whichever you choose is right for you and don't let anyone tell you that you're doing the wrong thing. It's YOUR body and your pain and your pain experience!
Getting the right pain management can sometimes be a hard nut to crack, doctors in general have poor understanding of chronic pain and the pain specialists are too few and here at least, mostly focusing on cancer patients, so for us who live with an invisible disorder where you can't physically see the pain unless a joint is dislocated or worn out, it can be really difficult to get the right help unless you're doing your homework and being honest with your doctor. It happens for most "invisible pain" fighters at least once that medical professionals question our pain as it can't be seen, and we get looked down upon as if we're faking the pain and just wanting morphine to get high.
As a pain patient, you have the right to adequate pain management so don't give up! Keep fighting with the doctors if you have to!
Many of us are very good at hiding exactly how much pain we're actually in, we can hold a straight face and appear happy and fine even though we're screaming inside from the pain, only very few get to see our facade crumble and those who see are usually those who spends the most time with us, like our closest family. It can take a long time to be taken seriously by doctors, and even longer to have a working pain management as you start on the weak stuff and work your way up to where you have enough relief. Sometimes it's a fight to get something better when your medicine isn't working for you, there's a general fear of morphine in the medical community which is quite understandable as there are people out there who fake pain only to get more and stronger medicines. Doctors are also worried about addiction, but what they don't realize is that a chronic pain patient hardly ever get addicted to morphine if they are on the right kind and for the right reason, and we also don't get the high which addicts are addicted to. The only big issue for a chronic pain patient taking any kind of morphine is that tolerance may build up over time so the doses may need to be increased from time to time.
From my own experience, I can only say what it is like for me who's living with EDS, and what it may be like for EDS in general. We tend to be either very resistant to painkillers, making it very difficult if not impossible to manage our pain well enough, or we may be extremely sensitive or severely allergic so it's difficult or impossible to find something that works for that reason.
I personally belong to the fairly resistant category, I have never been high from any kind of heavy duty narcotic classed painkiller, and I have no relief whatsoever from anything weaker than Oxycodone. I'm only on a low dose though, but again, nothing weaker will do shite for me, and unless a miracle happens and I wake up pain free one morning, I'll be on Oxycodone or another type of morphine for life.
I hate taking medicines, and don't take anything that doesn't help me feel better. The long acting painkillers I take twice daily do help me to get a slightly better quality of life and make breakthrough pain less frequent and slightly easier to treat compared to when I didn't have a working pain management. So despite hating to take medicines, the positive effect I get from it makes it worth biting the lemons of life.
There are many out there who refuses or can't take painkillers, or find other ways that works for them in managing their pain. If you refuse painkillers and can cope anyways, good for you! If you find another way of managing your pain, that's great. I really feel for those who really need medicine, but can't take any due to allergies, or who has no effect whatsoever from even the strongest medicines on the market.
Those who refuse painkillers has their reasons to do so, and their reasons are of varying nature. I don't say they're doing the wrong thing, but I will snap at them if they say I'm doing the wrong thing because I do take painkillers. Everyone has the right to choose which to do, and the only thing that is wrong, is to say another person is wrong in their choice of taking medicine or not.
There are many alternative ways to treat pain. It can be a TENS machine that sends electrical impulses, acupuncture, massage, relaxation exercises, physiotherapy, yoga, bracing, hot showers or baths, hydrotherapy, just to mention some. So if you don't want to, or can't take painkillers, there are many things to try. I've tried a fair bit of alternative ways but none of it works for me other than bracing but the bracing doesn't substitute my medicine, it just makes me need less rapid acting. But that doesn't mean alternative treatments won't work for you!
Whichever way you treat your pain, I hope it's working for you or that you find a way to get more comfortable!
Zebra hugs <3 p="">
To be honest, whether you take medicine or not for your pain is a totally personal decision and if you decide that taking medicine is the best for you, that is your choice just as much as it is someone's choice to not medicate. Whichever you choose is right for you and don't let anyone tell you that you're doing the wrong thing. It's YOUR body and your pain and your pain experience!
Getting the right pain management can sometimes be a hard nut to crack, doctors in general have poor understanding of chronic pain and the pain specialists are too few and here at least, mostly focusing on cancer patients, so for us who live with an invisible disorder where you can't physically see the pain unless a joint is dislocated or worn out, it can be really difficult to get the right help unless you're doing your homework and being honest with your doctor. It happens for most "invisible pain" fighters at least once that medical professionals question our pain as it can't be seen, and we get looked down upon as if we're faking the pain and just wanting morphine to get high.
As a pain patient, you have the right to adequate pain management so don't give up! Keep fighting with the doctors if you have to!
Many of us are very good at hiding exactly how much pain we're actually in, we can hold a straight face and appear happy and fine even though we're screaming inside from the pain, only very few get to see our facade crumble and those who see are usually those who spends the most time with us, like our closest family. It can take a long time to be taken seriously by doctors, and even longer to have a working pain management as you start on the weak stuff and work your way up to where you have enough relief. Sometimes it's a fight to get something better when your medicine isn't working for you, there's a general fear of morphine in the medical community which is quite understandable as there are people out there who fake pain only to get more and stronger medicines. Doctors are also worried about addiction, but what they don't realize is that a chronic pain patient hardly ever get addicted to morphine if they are on the right kind and for the right reason, and we also don't get the high which addicts are addicted to. The only big issue for a chronic pain patient taking any kind of morphine is that tolerance may build up over time so the doses may need to be increased from time to time.
From my own experience, I can only say what it is like for me who's living with EDS, and what it may be like for EDS in general. We tend to be either very resistant to painkillers, making it very difficult if not impossible to manage our pain well enough, or we may be extremely sensitive or severely allergic so it's difficult or impossible to find something that works for that reason.
I personally belong to the fairly resistant category, I have never been high from any kind of heavy duty narcotic classed painkiller, and I have no relief whatsoever from anything weaker than Oxycodone. I'm only on a low dose though, but again, nothing weaker will do shite for me, and unless a miracle happens and I wake up pain free one morning, I'll be on Oxycodone or another type of morphine for life.
I hate taking medicines, and don't take anything that doesn't help me feel better. The long acting painkillers I take twice daily do help me to get a slightly better quality of life and make breakthrough pain less frequent and slightly easier to treat compared to when I didn't have a working pain management. So despite hating to take medicines, the positive effect I get from it makes it worth biting the lemons of life.
There are many out there who refuses or can't take painkillers, or find other ways that works for them in managing their pain. If you refuse painkillers and can cope anyways, good for you! If you find another way of managing your pain, that's great. I really feel for those who really need medicine, but can't take any due to allergies, or who has no effect whatsoever from even the strongest medicines on the market.
Those who refuse painkillers has their reasons to do so, and their reasons are of varying nature. I don't say they're doing the wrong thing, but I will snap at them if they say I'm doing the wrong thing because I do take painkillers. Everyone has the right to choose which to do, and the only thing that is wrong, is to say another person is wrong in their choice of taking medicine or not.
There are many alternative ways to treat pain. It can be a TENS machine that sends electrical impulses, acupuncture, massage, relaxation exercises, physiotherapy, yoga, bracing, hot showers or baths, hydrotherapy, just to mention some. So if you don't want to, or can't take painkillers, there are many things to try. I've tried a fair bit of alternative ways but none of it works for me other than bracing but the bracing doesn't substitute my medicine, it just makes me need less rapid acting. But that doesn't mean alternative treatments won't work for you!
Whichever way you treat your pain, I hope it's working for you or that you find a way to get more comfortable!
Zebra hugs <3 p="">
Thursday, March 28, 2013
A day of resting
I had a busy week last week, having a couple of appointments out of town and helping out at my parents place a lot as my dad had a really bad cold. The weekend was busy as well with the fair and concert and then I had another appointment on Monday morning.
This week has been a pretty fatigued week, while I have been out and about a fair bit all week, today my body just said STOP! Been more or less forced to stay in bed all day today, feeling very tired and pretty achy. But hoping tomorrow will be a better day with more energy!
Had a really awesome time last night with my Chronically Awesome friends. So much fun to "meet" others who know what it's like to live with a condition, it's nice to listen to others and also have a place to vent or share experiences. Just a shame all of us are so far apart distance wise so it would be close to impossible to meet everyone in person at the same time, especially considering some may have difficulties to travel. But it's definitely people I'd love to meet in person if I get the chance to!
Still bouncing with excitement about the fair in April. Hoping to learn some useful things and maybe buy some items that can be useful to have at home and make things easier, like a jar opener, gloves made for wheelchair self propelling and small things like that.
But first, Easter celebrations! I'm an atheist but even an atheist can celebrate spring and enjoy chocolate eggs and just have a nice time with family. I celebrate Easter minus the religious bits LOL
How a Panthera wheelchair changed my life
I mentioned in my blog post yesterday that I've now got a wheelchair, and it's not just any wheelchair but a Panthera S2 wheelchair which is light, very easy to propel, easy to pop a wheelie with and the S2 wheelchair I have is customized just for me according to my measurements and needs. I've had my wheelchair for over a week now and it's already feeling like a part of me!
I know a lot of people who aren't paralyzed see a wheelchair as a failure, and they do all they can to avoid one, and I can from my own experience now say that getting a wheelchair is not a failure and absolutely nothing to be afraid of!
If you live with a debilitating condition such as EDS, that affects your ability to walk and stand, a wheelchair can really change your life to the better the same moment you sit in the chair for the first time.
For several months now, getting out has been far from easy, many weeks I only managed to get out maybe 2-3 times in a whole week due to being in too much pain to begin with, or being in too much pain after coming back home. All my excursions outside had to be planned ahead of time and things I should have been looking forwards to often became something to worry about and hoping that my body would behave on the day of the event.
I wanted to go out more, I felt like a prisoner at home but the icy roads and aching body kept me indoors more than I'd like.
Last Monday I got my Panthera S2 wheelchair, and all of a sudden, I got my life back! I sit well in the wheelchair so I can sit for a longer period of time than I can manage on a regular chair, not needing to stand up as much has lessened the pain in my lower back and SI joints and letting my legs rest outdoors makes me walk better and with less pain when I'm at home. Using the wheelchair when I'm out of town has also improved my physical ability to drive a car thanks to being in less pain when I get into the drivers seat.
I also find that self propelling the wheelchair puts less strain on my shoulders, elbows, wrists and hands than walking with a cane or crutches does, and that's just an added bonus. I can now get outside whenever I feel like it and cover a greater distance than I can walk, much faster than I can walk and feeling a lot less achy and fatigued than after walking. I no longer need to take the car to go to places within my town, I take the wheelchair which means I both get exercise and save gas.
I'm active again, more so than I've managed to be in several months. I'm outside every day now, either for an errand, or just take a roll around in town for the fresh air and exercise. My arms are getting stronger, something that will hopefully help my shoulders stay in place better in the long run and the wheelchair also helps me with my balance when practicing wheelies or handling curbs outside. I'm already feeling the anti tip wheels are in the way, but will use them for a while longer until I know exactly what movements I can do without tipping backwards, it hardly ever happens but better safe than sorry!
I went to a travel and tourism fair in Gothenburg this past Saturday and I drove both ways, I couldn't have done that without having my wheelchair to get around at the fair. In the evening I went to a concert in another town, and thanks to having the wheelchair at the fair I managed both the fair and the concert and all the driving it involved to go there and back.
Some says getting a wheelchair makes you lazy. I'd say that's not true! For me at least, using the wheelchair outside is saving my back and legs for indoor things such as cooking and housework and it is enabling me to be more active, social and take part in more activities and I'm even going to look into if there's any handicap sports in my area where I can meet others living with a disability and maybe try some light sports like sitting table tennis, all to be more social and active in ways that I am able to. I can not keep up with fully able bodied people all the time, they're too fast paced and high intensity and they don't always understand what it's like to live with a disability, be it a disability from an injury or a condition.
Now I'm looking forwards to another fair in Gothenburg which is in April, a fair for people living with a disability and people who work with the various equipment used for making life easier. Live and function is the name of the fair if directly translating it to English and I'm literally bouncing with excitement to go there!
The decision to request a wheelchair wasn't easy to make, but it is by far the best decision I've made this far in the management of my EDS. A wheelchair isn't a cure, but it has taken away some of the dis out of disability, leaving me with more ability!
My wheelchair has really changed my life, and my experience as a part time wheelchair user is only positive!
I feel Chronically Awesome!
If you live with a chronic condition or know someone who does, check out www.chronicallyawesome.org
I know a lot of people who aren't paralyzed see a wheelchair as a failure, and they do all they can to avoid one, and I can from my own experience now say that getting a wheelchair is not a failure and absolutely nothing to be afraid of!
If you live with a debilitating condition such as EDS, that affects your ability to walk and stand, a wheelchair can really change your life to the better the same moment you sit in the chair for the first time.
For several months now, getting out has been far from easy, many weeks I only managed to get out maybe 2-3 times in a whole week due to being in too much pain to begin with, or being in too much pain after coming back home. All my excursions outside had to be planned ahead of time and things I should have been looking forwards to often became something to worry about and hoping that my body would behave on the day of the event.
I wanted to go out more, I felt like a prisoner at home but the icy roads and aching body kept me indoors more than I'd like.
Last Monday I got my Panthera S2 wheelchair, and all of a sudden, I got my life back! I sit well in the wheelchair so I can sit for a longer period of time than I can manage on a regular chair, not needing to stand up as much has lessened the pain in my lower back and SI joints and letting my legs rest outdoors makes me walk better and with less pain when I'm at home. Using the wheelchair when I'm out of town has also improved my physical ability to drive a car thanks to being in less pain when I get into the drivers seat.
I also find that self propelling the wheelchair puts less strain on my shoulders, elbows, wrists and hands than walking with a cane or crutches does, and that's just an added bonus. I can now get outside whenever I feel like it and cover a greater distance than I can walk, much faster than I can walk and feeling a lot less achy and fatigued than after walking. I no longer need to take the car to go to places within my town, I take the wheelchair which means I both get exercise and save gas.
I'm active again, more so than I've managed to be in several months. I'm outside every day now, either for an errand, or just take a roll around in town for the fresh air and exercise. My arms are getting stronger, something that will hopefully help my shoulders stay in place better in the long run and the wheelchair also helps me with my balance when practicing wheelies or handling curbs outside. I'm already feeling the anti tip wheels are in the way, but will use them for a while longer until I know exactly what movements I can do without tipping backwards, it hardly ever happens but better safe than sorry!
I went to a travel and tourism fair in Gothenburg this past Saturday and I drove both ways, I couldn't have done that without having my wheelchair to get around at the fair. In the evening I went to a concert in another town, and thanks to having the wheelchair at the fair I managed both the fair and the concert and all the driving it involved to go there and back.
Some says getting a wheelchair makes you lazy. I'd say that's not true! For me at least, using the wheelchair outside is saving my back and legs for indoor things such as cooking and housework and it is enabling me to be more active, social and take part in more activities and I'm even going to look into if there's any handicap sports in my area where I can meet others living with a disability and maybe try some light sports like sitting table tennis, all to be more social and active in ways that I am able to. I can not keep up with fully able bodied people all the time, they're too fast paced and high intensity and they don't always understand what it's like to live with a disability, be it a disability from an injury or a condition.
Now I'm looking forwards to another fair in Gothenburg which is in April, a fair for people living with a disability and people who work with the various equipment used for making life easier. Live and function is the name of the fair if directly translating it to English and I'm literally bouncing with excitement to go there!
The decision to request a wheelchair wasn't easy to make, but it is by far the best decision I've made this far in the management of my EDS. A wheelchair isn't a cure, but it has taken away some of the dis out of disability, leaving me with more ability!
My wheelchair has really changed my life, and my experience as a part time wheelchair user is only positive!
I feel Chronically Awesome!
If you live with a chronic condition or know someone who does, check out www.chronicallyawesome.org
Wednesday, March 27, 2013
Managing life with EDS
I have EDS type 3, also known as HEDS or EDS-HT or EDS III or EDS hypermobility type. A dear child has many names as they say. I have probably mentioned my diagnose many times before in blog posts, but mention it again here as some reading this may not have read my blog before. Anyways, EDS III, which is what I have, is often considered the least severe type of EDS as far as mortality goes, but it's also known to be the most painful type of EDS and sadly we tend to either need enough painkillers to knock out an entire kindergarten just to get out of bed, or we're so super sensitive to medicines that it's close to impossible or even impossible to find a solution as far as pain medication goes. I belong to the group of EDS'ers who need strong, narcotic painkillers to function somewhat in my daily life, and I'm fortunate enough to not be completely resistant to the strong stuff like some with EDS may be.
Thought I'd make a list of the things that are most helpful to me in managing my daily life with EDS, a lot of it applies to any chronic condition, so here goes.
BendyJen's top 10 (that are all equally important, hence no numbers)
- Having a good doctor: It's so important to have a good doctor when you live with a chronic condition, someone who knows YOUR story and YOUR needs and who doesn't question your needs but do all (s)he can to help you in the best way possible.
- Pain management: Whether you take painkillers or not, that is YOUR decision, I have chosen to take painkillers even though I HATE it. I get relief from my painkillers and I have absolutely no side effects from them other than the positive side effect that I can actually function better when I'm in less pain.
- Support: Be it support from your family or friends or a chronically awesome online community, having people around you that understands, has your back and give you a push in the right direction when you struggle really means the world to someone living with EDS or another chronic condition.
- A pet: A pawesome furry friend can do so much for you! Few things are as soothing as the love and snuggles from a pet. Both cats and dogs can also alert you when something isn't right and a dog can be trained to become your certified service dog if you need to have one to manage your daily life. I have a cat and he knows when I'm not well, he won't leave my side and he's the most loving individual ever, and I love him more than words can describe. Without my cat, I wouldn't be where I am today.
- An occupational therapist: With EDS and many other conditions comes the fact that you are living with a disability and even the simplest of things as taking a shower or using the loo can become an issue. An occupational therapist can help you with things such as a shower chair, heightened toilet seat, work chair to use in the kitchen and various bits and pieces you may need to be more independent at home. I personally have the heightened toilet seat and a shower chair which really has made my life easier, along with making showering safer for me.
- Orthotics: With EDS, helping the joints to stay in place with bracing can be very helpful when you're in extra pain, or doing something that may lead to getting injured, or to let a joint rest for a while after a dislocation or partial dislocation. The only thing we should watch out with really is to become dependent on the orthotics, so it should be used in moderation only. I have a couple of rather impressive knee braces, wrist braces, Miami J Advanced neck collar, thumb braces and ring splints for my fingers to aid my function and/or relieve pain, but I only wear any of it as little as I possibly can and have been told by medical professionals I'm doing the right thing- listening to my body.
- Walking aid: If you have trouble walking, there's absolutely no shame in using a cane or crutch(es) to aid your walking if you feel it helps you and make you feel more secure when walking. Even young people can use a cane and they're available in really fancy colors and patterns these days! Even a walker can be helpful, though I could never get myself to use one for many reasons, I stuck with cane or crutches and still do when I walk.
- Wheelchair: If walking simply gets too tiring and/or painful, don't see a wheelchair as a failure! A wheelchair can really give you your life back and you don't have to be paralyzed to use one! Wheelchairs are available in many different models and from many brands, and there's one out there that will meet your needs, be it a manual or powerchair that you need, or why not a manual wheelchair with power assisted wheels? I have a Panthera S2 wheelchair since little more than a week now and my life has changed drastically for the better since I got it! I am in less pain in my ankles, knees, hips and lower back when I use my wheelchair outside of home. I can cover greater distances in the wheelchair than if I'm walking, and I can self propel a lot faster than I can walk, and it costs me less energy. In short, the wheelchair has made me active again and instead of being stuck at home too much, I now go out every day in the wheelchair and get exercise that way, and I look forward to events instead of feeling nervous about my walking ability and pain level on the day of the event.
- Talk to others: Knowing you're not alone with your condition and having somewhere to turn to when you need to ask something specific to the condition you live with means a lot. Join your local support group for your diagnose if you have one of those groups and/or the NGO for your condition, or join an online group for people with your diagnose. There's a myriad of Facebook groups that are diagnose specific where you can chat with others and make friends and find out that you're not alone in experiencing the symptoms and issues that you have. There's also Chronically Awesome which is a community for anyone living with any chronic condition, it's a great place to "meet" up with others fighting a chronic condition and you'll most likely find at least someone else having the same diagnose as you have. Suffering in silence doesn't help anyone, there's help and support out there!
- Accept: Accept your condition and disability and make the most of what ability you do have. Accepting that something is life long and maybe progressive isn't easy, but accepting it is a good start to living well with whatever your condition throws at you.
These are the things that helps me the most in managing my life with EDS, all of it equally as important. I take part in both diagnose specific and general support groups online, I have a very supportive family and friends and the most amazing cat you can imagine! Even though I have all the things I mention above, it doesn't mean that my life is a dance. I do struggle, and sometimes I struggle a lot, but by having the support and items that I need, I can live a better life. The item that helps my daily life the most has to be my wheelchair as it's enabling me to be a lot more independent, active, enables me to take part in things and makes me need the car a lot less. My wheelchair is both a part of my pain management and a mobility aid and for the time being at least, my shoulders, elbows, wrists and hands are strong enough to self propel. I do have issues in those joints as well, but my experience is that the wheelchair puts less strain on them than walking with a walking aid does, along with the fact that sitting in my custom adapted wheelchair lessens my lower back pain and makes my legs hurt less. I should probably write a whole blog post about my wheelchair soon, seeing it's past 4:30am in my part of the world now, that blog post won't be tonight.
Be well, and remember, you are not alone!
Thought I'd make a list of the things that are most helpful to me in managing my daily life with EDS, a lot of it applies to any chronic condition, so here goes.
BendyJen's top 10 (that are all equally important, hence no numbers)
- Having a good doctor: It's so important to have a good doctor when you live with a chronic condition, someone who knows YOUR story and YOUR needs and who doesn't question your needs but do all (s)he can to help you in the best way possible.
- Pain management: Whether you take painkillers or not, that is YOUR decision, I have chosen to take painkillers even though I HATE it. I get relief from my painkillers and I have absolutely no side effects from them other than the positive side effect that I can actually function better when I'm in less pain.
- Support: Be it support from your family or friends or a chronically awesome online community, having people around you that understands, has your back and give you a push in the right direction when you struggle really means the world to someone living with EDS or another chronic condition.
- A pet: A pawesome furry friend can do so much for you! Few things are as soothing as the love and snuggles from a pet. Both cats and dogs can also alert you when something isn't right and a dog can be trained to become your certified service dog if you need to have one to manage your daily life. I have a cat and he knows when I'm not well, he won't leave my side and he's the most loving individual ever, and I love him more than words can describe. Without my cat, I wouldn't be where I am today.
- An occupational therapist: With EDS and many other conditions comes the fact that you are living with a disability and even the simplest of things as taking a shower or using the loo can become an issue. An occupational therapist can help you with things such as a shower chair, heightened toilet seat, work chair to use in the kitchen and various bits and pieces you may need to be more independent at home. I personally have the heightened toilet seat and a shower chair which really has made my life easier, along with making showering safer for me.
- Orthotics: With EDS, helping the joints to stay in place with bracing can be very helpful when you're in extra pain, or doing something that may lead to getting injured, or to let a joint rest for a while after a dislocation or partial dislocation. The only thing we should watch out with really is to become dependent on the orthotics, so it should be used in moderation only. I have a couple of rather impressive knee braces, wrist braces, Miami J Advanced neck collar, thumb braces and ring splints for my fingers to aid my function and/or relieve pain, but I only wear any of it as little as I possibly can and have been told by medical professionals I'm doing the right thing- listening to my body.
- Walking aid: If you have trouble walking, there's absolutely no shame in using a cane or crutch(es) to aid your walking if you feel it helps you and make you feel more secure when walking. Even young people can use a cane and they're available in really fancy colors and patterns these days! Even a walker can be helpful, though I could never get myself to use one for many reasons, I stuck with cane or crutches and still do when I walk.
- Wheelchair: If walking simply gets too tiring and/or painful, don't see a wheelchair as a failure! A wheelchair can really give you your life back and you don't have to be paralyzed to use one! Wheelchairs are available in many different models and from many brands, and there's one out there that will meet your needs, be it a manual or powerchair that you need, or why not a manual wheelchair with power assisted wheels? I have a Panthera S2 wheelchair since little more than a week now and my life has changed drastically for the better since I got it! I am in less pain in my ankles, knees, hips and lower back when I use my wheelchair outside of home. I can cover greater distances in the wheelchair than if I'm walking, and I can self propel a lot faster than I can walk, and it costs me less energy. In short, the wheelchair has made me active again and instead of being stuck at home too much, I now go out every day in the wheelchair and get exercise that way, and I look forward to events instead of feeling nervous about my walking ability and pain level on the day of the event.
- Talk to others: Knowing you're not alone with your condition and having somewhere to turn to when you need to ask something specific to the condition you live with means a lot. Join your local support group for your diagnose if you have one of those groups and/or the NGO for your condition, or join an online group for people with your diagnose. There's a myriad of Facebook groups that are diagnose specific where you can chat with others and make friends and find out that you're not alone in experiencing the symptoms and issues that you have. There's also Chronically Awesome which is a community for anyone living with any chronic condition, it's a great place to "meet" up with others fighting a chronic condition and you'll most likely find at least someone else having the same diagnose as you have. Suffering in silence doesn't help anyone, there's help and support out there!
- Accept: Accept your condition and disability and make the most of what ability you do have. Accepting that something is life long and maybe progressive isn't easy, but accepting it is a good start to living well with whatever your condition throws at you.
These are the things that helps me the most in managing my life with EDS, all of it equally as important. I take part in both diagnose specific and general support groups online, I have a very supportive family and friends and the most amazing cat you can imagine! Even though I have all the things I mention above, it doesn't mean that my life is a dance. I do struggle, and sometimes I struggle a lot, but by having the support and items that I need, I can live a better life. The item that helps my daily life the most has to be my wheelchair as it's enabling me to be a lot more independent, active, enables me to take part in things and makes me need the car a lot less. My wheelchair is both a part of my pain management and a mobility aid and for the time being at least, my shoulders, elbows, wrists and hands are strong enough to self propel. I do have issues in those joints as well, but my experience is that the wheelchair puts less strain on them than walking with a walking aid does, along with the fact that sitting in my custom adapted wheelchair lessens my lower back pain and makes my legs hurt less. I should probably write a whole blog post about my wheelchair soon, seeing it's past 4:30am in my part of the world now, that blog post won't be tonight.
Be well, and remember, you are not alone!
Tuesday, March 5, 2013
Just a quick update...
I'm not doing great at the moment. I'm alive but that's about it...
I had the coil fitted a couple of weeks ago and have been in absolute hell most of the time since then. I get pain flares from outer space, and I'm constantly very fatigued. Have slept on the sofa many nights just because I'm too fatigued to move to my bed a couple of meters away and I'm simply knocked out by fatigue, falling asleep when least expecting it and then just taking the advantage to sleep when I actually can and not risk waking up completely by getting up if I wake up on the sofa during the night.
Back to when I had the coil fitted... It was meant to be a quick hospital visit, but ended up being a whole day in the ICU on very strong pain medicine both IV and subcutaneous and I was still in unbearable pain most of the time. I was unable to pee on my own due to the pain so had to be drained. When my flares are at its worst now, two weeks later, the pain is nearly as bad as it was that day in the ICU.
I'm waiting for an MRI of my neck, a referral has finally been sent now after asking for one for 5-6 months. Still need to lay down a lot due to the neck, have days where I can barely be upright at all due to the neck pain and accompanying cluster headaches. Wearing a rigid neck collar and taking strong painkillers can help some, but only when my neck is decent. When it's real bad, laying down is the only option. Some days are better than other.
Had a phone call this morning from my insurance person. She's going to send over the application form for applying disability. It's not something anyone chooses, but sometimes you have to bite the lemons and accept it...
Weight wise I couldn't care less! I already have really low appetite many days, and rarely have energy to cook "complicated" meals. Some days I only eat fruit, yogurt and maybe some chocolate because that's all I can cope with both appetite wise and energy wise.
I am the way I am, and look the way I look. I accept it as do my family and closest friends.
I'm taking a break from most things at the moment. Meditating, focusing on my well being and listening to my body. I'm not on social media as much as I used to be, nor do I carry my phone with me everywhere. I like my peace and quiet and only talk with very few people.
My only focus at the moment is to feel better physically, and I do all it takes to do so, be it by resting and/or taking medicines to manage my pain, using orthotics to support my joints when they're extra wobbly or painful, and using mobility aid when I'm outside.
Anyone wishing to criticize my way of living can just tell that to the wall behind the 2nd door to the right along the Yellowbrick road leading to I don't give a fuck town.
I don't know when I'll update my blog again, but I am alive, and I'm struggling to feel better physically. I'm not on computer, phone or pad much, and that's by choice.
I had the coil fitted a couple of weeks ago and have been in absolute hell most of the time since then. I get pain flares from outer space, and I'm constantly very fatigued. Have slept on the sofa many nights just because I'm too fatigued to move to my bed a couple of meters away and I'm simply knocked out by fatigue, falling asleep when least expecting it and then just taking the advantage to sleep when I actually can and not risk waking up completely by getting up if I wake up on the sofa during the night.
Back to when I had the coil fitted... It was meant to be a quick hospital visit, but ended up being a whole day in the ICU on very strong pain medicine both IV and subcutaneous and I was still in unbearable pain most of the time. I was unable to pee on my own due to the pain so had to be drained. When my flares are at its worst now, two weeks later, the pain is nearly as bad as it was that day in the ICU.
I'm waiting for an MRI of my neck, a referral has finally been sent now after asking for one for 5-6 months. Still need to lay down a lot due to the neck, have days where I can barely be upright at all due to the neck pain and accompanying cluster headaches. Wearing a rigid neck collar and taking strong painkillers can help some, but only when my neck is decent. When it's real bad, laying down is the only option. Some days are better than other.
Had a phone call this morning from my insurance person. She's going to send over the application form for applying disability. It's not something anyone chooses, but sometimes you have to bite the lemons and accept it...
Weight wise I couldn't care less! I already have really low appetite many days, and rarely have energy to cook "complicated" meals. Some days I only eat fruit, yogurt and maybe some chocolate because that's all I can cope with both appetite wise and energy wise.
I am the way I am, and look the way I look. I accept it as do my family and closest friends.
I'm taking a break from most things at the moment. Meditating, focusing on my well being and listening to my body. I'm not on social media as much as I used to be, nor do I carry my phone with me everywhere. I like my peace and quiet and only talk with very few people.
My only focus at the moment is to feel better physically, and I do all it takes to do so, be it by resting and/or taking medicines to manage my pain, using orthotics to support my joints when they're extra wobbly or painful, and using mobility aid when I'm outside.
Anyone wishing to criticize my way of living can just tell that to the wall behind the 2nd door to the right along the Yellowbrick road leading to I don't give a fuck town.
I don't know when I'll update my blog again, but I am alive, and I'm struggling to feel better physically. I'm not on computer, phone or pad much, and that's by choice.
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