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AdminAdmin- Posts : 194
Join date : 2020-01-12
Age : 45 
EDS Awareness Month - My FB Posts:
Fri May 12, 2023 6:08 pm
MOST of the FB posts I've done for EDS Awareness Month 2023:
-----
For EDS Awareness Month - It's: a genetic mutation/no cure/Collagen problem. Invisible chronic illness that never ends. Chronic pain never ends. Chronic fatigue (which is different from normal 'tired') never ends. All other aspects of EDS never end. It's life long agony. We do keep it all to ourselves. We do minimise our pain/fatigue/depression etc.. as much as possible. It SUCKS BIG TIME.
-----
For EDS Awareness Month - 2 of my fingers on each hand can easily go into the 'Swan Neck Deformity'. It doesn't actually hurt. It's one of many aspects of EDS.
-----
For EDS Awareness Month - The singer Sia has EDS, as well as Jameela Jamil (Tahani in 'The Good Place'), among a few other celebrities.
Sia, who has openly talked about her past opioid addiction because of chronic pain, tweeted about her struggles with the genetic condition.
“Hey, I’m suffering with chronic pain, a neurological disease, Ehlers-Danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going,” she wrote Oct. 4. “Life is f–king hard. Pain is demoralizing, and you’re not alone.”
-----
For EDS Awareness Month - EDS & Sleep (longish post):
EDS affects sleep. For me personally it's the following:
1. At senior school we were put on work placements. Mine was at Irthlingborough Infants School. As opposed to being there for 2 weeks I was at mine for 3 days. This is because my shoulder dislocated at night. The ONLY thing we could all put it down to is that the kids would all pull me by the arm at play time. Cause they wanted me to play or supervise them. There was a meeting with my form Tutor, it was agreed I'd stay back at school, helping her out. We didn't get along so it wasn't fun. Dislocations at night became a common problem. The last time my shoulder dislocated was when I was waking up. Eventually (it took about 3 hours) I got it into a collar & cuff, it was TRUE AGONIZING HELL (that I've HAD to do before). Spent 8-9 hours in A&E to have it x-rayed & put back into place (NOT pleasant at all). The agony that comes with a dislocation is the worst thing ever. I can only move arm literally a mm every 10-15 minutes, due to the pain.
2. Chronic pain of EDS as a whole keeps me up. Makes it hard EVERY night to drift off. Eventually when I have drifted off to sleep, my sleep is interupted by sudden bouts of further pain or visits to the loo. Then it takes ages once again to drift off. Just turning onto my right side (the ONLY remotely comfortable sleep position for me) is agony and takes my breath away. It often feels like an Elephant is standing on my chest, with it's full weight. Making it hard & of course painful to breathe.
3. The cold weather affects how I sleep. Having EDS means we REALLY DO, for example, feel the cold much more. The ENTIRE time the weather is even slightly cold, it results in sleep issues.
4. Apparently, it's come up before, I snore.
5. I've had at least 4 sleepwalking episodes. Where I have zero recall. I can only go by what (late) Mum or (late) Dad told me or what I'd notice upon waking up.
6. Many years, while living with folks (while dealing with Mum's narcissism etc...), the stress and hell would 100% prevent me from sleeping. It'd be tyical for me to go 5-6 nights in a row having zero sleep. Then just having about 1-2 hours max per night afterwards for a night or 2. It'd essentially loop like that. Up all night, unable to drift off at all. All cause of the stresses of the day, being the ONLY one truly aware of Mum's narcissism. While at the same time dealing with the chronic fatigue caused by EDS.
So sleep for me has NEVER been restful/beneficial in ANY way. It hasn't much changed either. Number 6 no longer really happens, as both parents died in 2016. But due to Mum, how she truly was all those years causing my PTSD, sleep is chronically affected. Now by nightmares/PTSD flashbacks etc...
Sleep has been & always will be a nightly battle for me, to the extreme.
-----
For EDS Awareness Month - Stretchy skin comes as part of EDS. Not every sufferer has it, but it is one defining aspect. My eyelids are a bit stretchy. It's why they look quite wrinkled already. Some sufferers, like Gary Turner, have a fair bit of stretchy skin. He was in Guiness World Record book as having stretchiest skin.
We also scar REALLY easily & develop cigarette paper type scars. I have multiple, mostly on my lower left arm.
Skin is the largest organ of the body. EDS results in many skin related issues. Such as: strechiness, scars, easy bruising, soft velvety baby soft skin etc...
-----
For EDS Awareness Month - For ANY chronic illness, like EDS, pain meds are a way of life. They DON'T eliminate the pain. They take the edge off a bit. Get you to a point where you can JUST ABOUT function, make you some what neutral. Meds come with brutal & unpleasant side effects. At end of day pain meds have worn off=FULL agonizing pain.
To quote Hugh Laurie as Dr. Gregory House (from old tv show 'House', which I watch often via Amazon Prime Video): "Life is pain".
-----
For EDS Awareness Month - OTC (over the counter) meds do NOTHING for the pain we are in. They are WAY BEYOND useless.
Over the years, having chronic pain, it increases your pain tolerance. So we can withstand more pain & with medication, still function, more than non-sufferers would be able to.
We get accused of faking our illnesses, or being lazy. Were faking BEING WELL, we become experts at hiding the pain & discomfort we are ALWAYS in. Pain that would truly debelitate/cripple/destroy non-sufferers if they experienced it.
-----
For EDS Awareness Month - Re: Our balance. With EDS our balance is 'off'. We may therefore easily walk into things because of this. My balance is shot to hell. I haven't been able to i.e. ride a bike in over a decade. It took me longer to start with to be even able to ride a bike, when I was a kid. I only had a few years when I could ride a bike. But now there's simply just NO WAY. Using i.e. electric skateboard/scooters or similar type items would NOT work with me.
-----
For EDS Awareness Month - An oldie of (late) Mum & I.
Both sufferers of EDS3, (late) Mum to a much LESSER degree than me. Which was known by many by time this photo was taken. Offspring of sufferers tend to be affected by EDS much more. Mum had constipation issues & her elbow (when she was in Nurse training) used to dislocate (she had surgery for this, which made it so one elbow couldn't be straightened). Mum would use a walking stick due to her knees, which she'd had replaced. Mum always put her weight down to having Bro & I & not being able to lose associated weight.
-----
For EDS Awareness Month - Repeated surgeries for same problem is quite a common thing for us with EDS. Luckily I've had NO surgeries & that's how I hope it'll stay, as I'm needle phobic & have already spent too much time in Hospitals etc... Also stitches can be a problem with EDS sufferers as our skin is problematic. It also takes longer for us to heal.
-----
For EDS Awareness Month - Mobility aids & braces etc... of various different types are required. Our need for them changes, sometimes by the minute in extreme cases. When out & about I use a crutch for extra support. It 'has more guts to it' than a walking stick, which I used to use. I have a powerchair, I have collar & cuff(s), knee braces, arthritis gloves & I have wrist supports.
Embarassing problems can also be caused by EDS. (Late) Mum had lifelong constipation issues. Often not needing the loo for 2-3 days at a time. Mum was essentially too clogged up, I use pads EVERY day.
-----
For EDS Awareness Month - Most of the normal day to day tasks people take for granted are SO hard for those of us with a chronic illness.
I struggle with: having a bath or shower/getting dressed or undressed/exercise of any kind really is IMPOSSIBLE/shaving my head is hard work & takes a while/when I had longer hair, washing it was pure agony/kneeling down & getting back up, cause knees crack etc.../walking, as it feels like I'm lugging around a tonne weight on each leg all the time, a 10 tonne weight during flare ups/running is IMPOSSIBLE/household chores such as laundry & dishes/simply moving unstable & loose joints/going out/going to i.e. family gatherings or supermarket/& of course STAIRS.
STAIRS are, especially, an EDS'rs WORST enemy.
-----
For EDS Awareness Month - Exerpt from web search: "Due to issues with the autonomic nervous system (which manages automatic body processes like heartrate and blood pressure) EDS patients are often faced with blood pressure that is too high or too low. This can cause the patient to feel extremely light headed, dizzy, or faint especially when standing up. Showers and hot tubs can be dangerous for them for this reason".
My blood pressure has ALWAYS been really low. A Dr. commented once, saying "I know you have a blood pressure cause your here". It's often commented on by Dr's.
-----
For EDS Awareness Month - Over the years, coping with everything EDS throws at us, we become EXPERTS in 'faking being WELL'. It becomes very much our normal, to by default, fake being well when around others. We don't want to be a burden to others. Don't want pity. Don't want those around us to be uncomfortable etc...
-----
For EDS Awareness Month - The chronic pain of EDS NEVER ends for a second & is agony. From the very moment I wake up, to the eventual moment, I'm able to drift off, I'm in pain & fully aware of it. During the night a sudden pain, or even when a dislocation occurs, it brings you right back to being in absolute agony. There is NO REAL LET UP in the pain.
When comparing it to Cancer pain, I can ONLY go by my (late) Dad, who fought Colon Cancer for 2 years. He had MANY MOMENTS during this time when HE WASN'T in pain & he WAS STILL ABLE TO FUNCTION. He was, for quite some time, still able to i.e. drive. He eventually sold the car & we became car less. Many nights when we were waiting for an Ambulance to come for him, he'd be ABLE TO EASILY SLEEP. I'd be wide awake the whole time, unable to drift off, due to never ending chronic pain I'm always in.
-----
For EDS Awareness Month - Other conditions tend to come with EDS by default. So it's never just EDS, it's EDS plus i.e. IBS/Chronic Fatigue Syndrome/POTS/TMJ etc... It adds further problems onto an already 'multi systemic' problem. Making life even harder, more painful & more miserable. It ALL affects our mental health over the years. It's BIG TIME depressing to have to live life this way with all these issues. For there to be NO CURE for EDS, simply SUCKS like you can't even imagine.
Due to main health problems associated with EDS, we 'live life like an OAP', by for MANY MORE DECADES/life. Due to: easy bruising, easy scarring, joint pain, loose & unstable joints, poor eyesight, lack of mobility, need for mobility aids, reliance on medication, skin problems etc...
-----
For EDS Awareness Month - I now have a National Disability Card which I purchased online recentley. I have a clip, repeat prescription + extra notes with my proof of age card all combined with disability card in a badge holder. I clip this to i.e. my jacket, when going out anywhere.
-----
For EDS Awareness Month - (Longish post) 'The Spoon Theory' (which I don't personally use) is as follows (from ChatGPT):
The spoon theory is a metaphor used to explain the limited energy and physical capabilities that people with chronic illnesses, such as Ehlers-Danlos Syndrome (EDS), have on a daily basis. The term "spoonie" is often used to refer to people who have chronic illnesses.
The spoon theory was created by Christine Miserandino, who has lupus, to help her friend understand what it's like to live with a chronic illness. The metaphor uses spoons as a symbol for the limited energy that people with chronic illnesses have.
In the spoon theory, a person with a chronic illness has a certain number of spoons each day, which represents their energy and physical capabilities. For example, someone with EDS might start the day with fewer spoons than a healthy person because they may have woken up in pain or had a restless night's sleep. Every activity throughout the day, such as taking a shower or doing laundry, requires a certain number of spoons. Once all of the spoons are used up, the person with EDS may not have enough energy to complete any more activities and may experience pain, fatigue, or other symptoms.
The spoon theory is a helpful way for people with chronic illnesses to explain to others what it's like to live with their condition and to help them manage their energy and prioritize their daily activities. By understanding how many spoons they have and how much each activity requires, people with EDS can better manage their symptoms and maintain their quality of life.
-----
For EDS Awareness Month - Given that our symptoms are largely the same as what the elderly deal with in their later years, we DO feel older than our actual years.
Also your highly unlikely to ever see us on our truly bad days. We don't want to i.e. upset/shock those we care about, by you witnessing our bad days etc...
-----
For EDS Awareness Month - WE ARE life time sick, despite appearances. It's an invisible, chronic pain condition.
Others don't believe we have EDS. They think were faking it to i.e. avoid going out to work etc... For a while, with the help of a DEA (Disability Employment Advisor) I was able to work. But that has LONG GONE now.
When you suffer from any chronic illness you world essentially swivels up to nothing. You become isolated, withdrawn from the world, worried about every single move you make (in case a shoulder or knee dislocates etc...). Claiming benefits also proves hard, if not impossible due to lack of awareness & general understanding of condition etc... I claimed PIP for one year & that was SO MUCH HELL & AGRO, totally put me off ever renewing claim.
-----
For EDS Awareness Month - "Pain changes a person" quote by unknown. Quote is 100% true.
When the pain is chronic (never ending/life long as it is with EDS), it leads to depression etc... It can also lead to a lot of anger, frustration, silence, isolation, withdrawal etc...
Yet we show no, or little signs of this, when around others.
-----
For EDS Awareness Month - When you have EDS, as I do, you WILL get flare ups. You never know when they'll hit. You'll never know how long it'll last. You simply know, YOU WILL GET THEM.
Personally for me, when in a flare up, everything is made worse a good 10 times what it already is (over 10 on Paramedics scale is my usual). I become useless in a flare up.
Not in my head at all, 'on non functional auto pilot' when extreme brain fog kicks in. Flare ups are THE WORST. It can take a few days to fully come out of some flare ups. As with every other EDS aspect, it's a life long problem. My last one was around Mother's Day this year. When they hit, every minute feels like an hour, the days just drag for me when in a flare up.
-----
-----
For EDS Awareness Month - It's: a genetic mutation/no cure/Collagen problem. Invisible chronic illness that never ends. Chronic pain never ends. Chronic fatigue (which is different from normal 'tired') never ends. All other aspects of EDS never end. It's life long agony. We do keep it all to ourselves. We do minimise our pain/fatigue/depression etc.. as much as possible. It SUCKS BIG TIME.
-----
For EDS Awareness Month - 2 of my fingers on each hand can easily go into the 'Swan Neck Deformity'. It doesn't actually hurt. It's one of many aspects of EDS.
-----
For EDS Awareness Month - The singer Sia has EDS, as well as Jameela Jamil (Tahani in 'The Good Place'), among a few other celebrities.
Sia, who has openly talked about her past opioid addiction because of chronic pain, tweeted about her struggles with the genetic condition.
“Hey, I’m suffering with chronic pain, a neurological disease, Ehlers-Danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going,” she wrote Oct. 4. “Life is f–king hard. Pain is demoralizing, and you’re not alone.”
-----
For EDS Awareness Month - EDS & Sleep (longish post):
EDS affects sleep. For me personally it's the following:
1. At senior school we were put on work placements. Mine was at Irthlingborough Infants School. As opposed to being there for 2 weeks I was at mine for 3 days. This is because my shoulder dislocated at night. The ONLY thing we could all put it down to is that the kids would all pull me by the arm at play time. Cause they wanted me to play or supervise them. There was a meeting with my form Tutor, it was agreed I'd stay back at school, helping her out. We didn't get along so it wasn't fun. Dislocations at night became a common problem. The last time my shoulder dislocated was when I was waking up. Eventually (it took about 3 hours) I got it into a collar & cuff, it was TRUE AGONIZING HELL (that I've HAD to do before). Spent 8-9 hours in A&E to have it x-rayed & put back into place (NOT pleasant at all). The agony that comes with a dislocation is the worst thing ever. I can only move arm literally a mm every 10-15 minutes, due to the pain.
2. Chronic pain of EDS as a whole keeps me up. Makes it hard EVERY night to drift off. Eventually when I have drifted off to sleep, my sleep is interupted by sudden bouts of further pain or visits to the loo. Then it takes ages once again to drift off. Just turning onto my right side (the ONLY remotely comfortable sleep position for me) is agony and takes my breath away. It often feels like an Elephant is standing on my chest, with it's full weight. Making it hard & of course painful to breathe.
3. The cold weather affects how I sleep. Having EDS means we REALLY DO, for example, feel the cold much more. The ENTIRE time the weather is even slightly cold, it results in sleep issues.
4. Apparently, it's come up before, I snore.
5. I've had at least 4 sleepwalking episodes. Where I have zero recall. I can only go by what (late) Mum or (late) Dad told me or what I'd notice upon waking up.
6. Many years, while living with folks (while dealing with Mum's narcissism etc...), the stress and hell would 100% prevent me from sleeping. It'd be tyical for me to go 5-6 nights in a row having zero sleep. Then just having about 1-2 hours max per night afterwards for a night or 2. It'd essentially loop like that. Up all night, unable to drift off at all. All cause of the stresses of the day, being the ONLY one truly aware of Mum's narcissism. While at the same time dealing with the chronic fatigue caused by EDS.
So sleep for me has NEVER been restful/beneficial in ANY way. It hasn't much changed either. Number 6 no longer really happens, as both parents died in 2016. But due to Mum, how she truly was all those years causing my PTSD, sleep is chronically affected. Now by nightmares/PTSD flashbacks etc...
Sleep has been & always will be a nightly battle for me, to the extreme.
-----
For EDS Awareness Month - Stretchy skin comes as part of EDS. Not every sufferer has it, but it is one defining aspect. My eyelids are a bit stretchy. It's why they look quite wrinkled already. Some sufferers, like Gary Turner, have a fair bit of stretchy skin. He was in Guiness World Record book as having stretchiest skin.
We also scar REALLY easily & develop cigarette paper type scars. I have multiple, mostly on my lower left arm.
Skin is the largest organ of the body. EDS results in many skin related issues. Such as: strechiness, scars, easy bruising, soft velvety baby soft skin etc...
-----
For EDS Awareness Month - For ANY chronic illness, like EDS, pain meds are a way of life. They DON'T eliminate the pain. They take the edge off a bit. Get you to a point where you can JUST ABOUT function, make you some what neutral. Meds come with brutal & unpleasant side effects. At end of day pain meds have worn off=FULL agonizing pain.
To quote Hugh Laurie as Dr. Gregory House (from old tv show 'House', which I watch often via Amazon Prime Video): "Life is pain".
-----
For EDS Awareness Month - OTC (over the counter) meds do NOTHING for the pain we are in. They are WAY BEYOND useless.
Over the years, having chronic pain, it increases your pain tolerance. So we can withstand more pain & with medication, still function, more than non-sufferers would be able to.
We get accused of faking our illnesses, or being lazy. Were faking BEING WELL, we become experts at hiding the pain & discomfort we are ALWAYS in. Pain that would truly debelitate/cripple/destroy non-sufferers if they experienced it.
-----
For EDS Awareness Month - Re: Our balance. With EDS our balance is 'off'. We may therefore easily walk into things because of this. My balance is shot to hell. I haven't been able to i.e. ride a bike in over a decade. It took me longer to start with to be even able to ride a bike, when I was a kid. I only had a few years when I could ride a bike. But now there's simply just NO WAY. Using i.e. electric skateboard/scooters or similar type items would NOT work with me.
-----
For EDS Awareness Month - An oldie of (late) Mum & I.
Both sufferers of EDS3, (late) Mum to a much LESSER degree than me. Which was known by many by time this photo was taken. Offspring of sufferers tend to be affected by EDS much more. Mum had constipation issues & her elbow (when she was in Nurse training) used to dislocate (she had surgery for this, which made it so one elbow couldn't be straightened). Mum would use a walking stick due to her knees, which she'd had replaced. Mum always put her weight down to having Bro & I & not being able to lose associated weight.
-----
For EDS Awareness Month - Repeated surgeries for same problem is quite a common thing for us with EDS. Luckily I've had NO surgeries & that's how I hope it'll stay, as I'm needle phobic & have already spent too much time in Hospitals etc... Also stitches can be a problem with EDS sufferers as our skin is problematic. It also takes longer for us to heal.
-----
For EDS Awareness Month - Mobility aids & braces etc... of various different types are required. Our need for them changes, sometimes by the minute in extreme cases. When out & about I use a crutch for extra support. It 'has more guts to it' than a walking stick, which I used to use. I have a powerchair, I have collar & cuff(s), knee braces, arthritis gloves & I have wrist supports.
Embarassing problems can also be caused by EDS. (Late) Mum had lifelong constipation issues. Often not needing the loo for 2-3 days at a time. Mum was essentially too clogged up, I use pads EVERY day.
-----
For EDS Awareness Month - Most of the normal day to day tasks people take for granted are SO hard for those of us with a chronic illness.
I struggle with: having a bath or shower/getting dressed or undressed/exercise of any kind really is IMPOSSIBLE/shaving my head is hard work & takes a while/when I had longer hair, washing it was pure agony/kneeling down & getting back up, cause knees crack etc.../walking, as it feels like I'm lugging around a tonne weight on each leg all the time, a 10 tonne weight during flare ups/running is IMPOSSIBLE/household chores such as laundry & dishes/simply moving unstable & loose joints/going out/going to i.e. family gatherings or supermarket/& of course STAIRS.
STAIRS are, especially, an EDS'rs WORST enemy.
-----
For EDS Awareness Month - Exerpt from web search: "Due to issues with the autonomic nervous system (which manages automatic body processes like heartrate and blood pressure) EDS patients are often faced with blood pressure that is too high or too low. This can cause the patient to feel extremely light headed, dizzy, or faint especially when standing up. Showers and hot tubs can be dangerous for them for this reason".
My blood pressure has ALWAYS been really low. A Dr. commented once, saying "I know you have a blood pressure cause your here". It's often commented on by Dr's.
-----
For EDS Awareness Month - Over the years, coping with everything EDS throws at us, we become EXPERTS in 'faking being WELL'. It becomes very much our normal, to by default, fake being well when around others. We don't want to be a burden to others. Don't want pity. Don't want those around us to be uncomfortable etc...
-----
For EDS Awareness Month - The chronic pain of EDS NEVER ends for a second & is agony. From the very moment I wake up, to the eventual moment, I'm able to drift off, I'm in pain & fully aware of it. During the night a sudden pain, or even when a dislocation occurs, it brings you right back to being in absolute agony. There is NO REAL LET UP in the pain.
When comparing it to Cancer pain, I can ONLY go by my (late) Dad, who fought Colon Cancer for 2 years. He had MANY MOMENTS during this time when HE WASN'T in pain & he WAS STILL ABLE TO FUNCTION. He was, for quite some time, still able to i.e. drive. He eventually sold the car & we became car less. Many nights when we were waiting for an Ambulance to come for him, he'd be ABLE TO EASILY SLEEP. I'd be wide awake the whole time, unable to drift off, due to never ending chronic pain I'm always in.
-----
For EDS Awareness Month - Other conditions tend to come with EDS by default. So it's never just EDS, it's EDS plus i.e. IBS/Chronic Fatigue Syndrome/POTS/TMJ etc... It adds further problems onto an already 'multi systemic' problem. Making life even harder, more painful & more miserable. It ALL affects our mental health over the years. It's BIG TIME depressing to have to live life this way with all these issues. For there to be NO CURE for EDS, simply SUCKS like you can't even imagine.
Due to main health problems associated with EDS, we 'live life like an OAP', by for MANY MORE DECADES/life. Due to: easy bruising, easy scarring, joint pain, loose & unstable joints, poor eyesight, lack of mobility, need for mobility aids, reliance on medication, skin problems etc...
-----
For EDS Awareness Month - I now have a National Disability Card which I purchased online recentley. I have a clip, repeat prescription + extra notes with my proof of age card all combined with disability card in a badge holder. I clip this to i.e. my jacket, when going out anywhere.
-----
For EDS Awareness Month - (Longish post) 'The Spoon Theory' (which I don't personally use) is as follows (from ChatGPT):
The spoon theory is a metaphor used to explain the limited energy and physical capabilities that people with chronic illnesses, such as Ehlers-Danlos Syndrome (EDS), have on a daily basis. The term "spoonie" is often used to refer to people who have chronic illnesses.
The spoon theory was created by Christine Miserandino, who has lupus, to help her friend understand what it's like to live with a chronic illness. The metaphor uses spoons as a symbol for the limited energy that people with chronic illnesses have.
In the spoon theory, a person with a chronic illness has a certain number of spoons each day, which represents their energy and physical capabilities. For example, someone with EDS might start the day with fewer spoons than a healthy person because they may have woken up in pain or had a restless night's sleep. Every activity throughout the day, such as taking a shower or doing laundry, requires a certain number of spoons. Once all of the spoons are used up, the person with EDS may not have enough energy to complete any more activities and may experience pain, fatigue, or other symptoms.
The spoon theory is a helpful way for people with chronic illnesses to explain to others what it's like to live with their condition and to help them manage their energy and prioritize their daily activities. By understanding how many spoons they have and how much each activity requires, people with EDS can better manage their symptoms and maintain their quality of life.
-----
For EDS Awareness Month - Given that our symptoms are largely the same as what the elderly deal with in their later years, we DO feel older than our actual years.
Also your highly unlikely to ever see us on our truly bad days. We don't want to i.e. upset/shock those we care about, by you witnessing our bad days etc...
-----
For EDS Awareness Month - WE ARE life time sick, despite appearances. It's an invisible, chronic pain condition.
Others don't believe we have EDS. They think were faking it to i.e. avoid going out to work etc... For a while, with the help of a DEA (Disability Employment Advisor) I was able to work. But that has LONG GONE now.
When you suffer from any chronic illness you world essentially swivels up to nothing. You become isolated, withdrawn from the world, worried about every single move you make (in case a shoulder or knee dislocates etc...). Claiming benefits also proves hard, if not impossible due to lack of awareness & general understanding of condition etc... I claimed PIP for one year & that was SO MUCH HELL & AGRO, totally put me off ever renewing claim.
-----
For EDS Awareness Month - "Pain changes a person" quote by unknown. Quote is 100% true.
When the pain is chronic (never ending/life long as it is with EDS), it leads to depression etc... It can also lead to a lot of anger, frustration, silence, isolation, withdrawal etc...
Yet we show no, or little signs of this, when around others.
-----
For EDS Awareness Month - When you have EDS, as I do, you WILL get flare ups. You never know when they'll hit. You'll never know how long it'll last. You simply know, YOU WILL GET THEM.
Personally for me, when in a flare up, everything is made worse a good 10 times what it already is (over 10 on Paramedics scale is my usual). I become useless in a flare up.
Not in my head at all, 'on non functional auto pilot' when extreme brain fog kicks in. Flare ups are THE WORST. It can take a few days to fully come out of some flare ups. As with every other EDS aspect, it's a life long problem. My last one was around Mother's Day this year. When they hit, every minute feels like an hour, the days just drag for me when in a flare up.
-----
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