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I added my story of personal coping mechanisms below. What do you think? Please don't hesitate to join the discussion or add more!
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Hey Zebras!!
For those of you who don't watch me, I'm in pretty rough condition at the moment and that's why you haven't heard from me. I've had a rough past 6 months with various issues but that's EDS for you. I'll make it through. We zebras are fighters, right?
But since I haven't been so active with journals and such, I wanted to start a discussion that we can cover, to help and get the gears turning.
I think that a good thing to cover would be coping mechanisms.
For anyone who deals with a chronic condition (physical and/or mental) this is a big topic that you are probably all familiar with working on, even if you haven't had a label to slap on it. It could be escapism or distraction or things that make you feel motivated, productive, or give you hope; just a way for you to try and make it through a bad situation.
As zebras, we've all been through some hard spots, just because of the experiences of our health, But there are many reasons to try and seek comfort in an activity or way of thinking, so this conversation isn't limited to just health situations. Coping mechanisms are tools that people use to get through the things that make you feel like, maybe you just aren't strong enough to get through this.
I wanted to ask all of you, what kind of coping mechanisms do you use?
What have you found helps?
Are there things that work for some situations but not others?
Do you have a story about how you discovered a particular mechanism or a time when one could have saved you?
You can take your time to discuss this because it may take me a little while before I'm well enough to take all of this information you share and make something from it, but I really am curious about what you all have to say on the matter. If you don't feel like talking about this publicly, you can also send me a note.
After this discussion is over, I'm going to take all of the information that I gather to write something about this. It's an active project so lets just see where this leads. The more input the better so don't be afraid to speak up. This is a really good topic to be open about and in the end, sharing the things that help you personally may just help someone else who hadn't thought of that. Lets turn this into a real discussion.
-Michaela
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Personally, I've experimented with a lot of different coping mechanism. When I was between 12-17 I used to make stories. Hundreds and hundreds of stories in my head. It was my escape into my own worlds. If one story wasn't working for me, I would pick up another. I probably spent more time in my head than outside of it! I used to read too. So many books. Which inspired more stories!
But then at 17, things got harder. I was struggling to lose myself in the pages of a book like I used to and the stories... were becoming more and more out of reach when I took medication.Thankfully that was when I discovered RolePlaying. You mean you can actively live out this stories with the added unpredictability of another person's thoughts and ideas?! Count me in! Rping got me through some of the worst experiences in my life.
Currently, I have been struggling. As my physical condition declines I get a strong and stronger need to control my environment and my actions and be productive. It's a struggle now that it's caused some major anxiety and has now developed into OCD but I am doing what I can. Now that I also have a mental need for coping mechanisms rping maybe hasn't quite been enough. I've been working on combinations with music and such but my need to feel productive and my constant frustration with myself gives me trouble for sure. Improving in drawing helps. I've been pushing my limits like crazy in the last year to improve and learn. I also do research and counsel people, taking on between 2 and 8 clients at a time.
That is all fine and dandy.... as long as I have control. A month or so ago, I lost that. Everything suddenly exploded in my face. I stopped sleeping. I had to apologize to my clients. I could hardly draw without feeling overwhelmed because of all the projects that I'd piled up for myself.
So. That is why I am currently working on some things. I will get better. Music. Relaxation. Rping. I tried interactive games but that hasn't worked much. The biggest thing is covering the clock on my computer. Time ties into the need for control so. I've got some great support and as I start to do physically better, I'm sure that I will do mentally better. I've just had some really rotten luck lately.
------
So enough about me!! Members, this is an active discussion! What are you thinking? What have you done/do you do to get through the bad? So far your comments have been eye opening!
---------
Hey Zebras!!
For those of you who don't watch me, I'm in pretty rough condition at the moment and that's why you haven't heard from me. I've had a rough past 6 months with various issues but that's EDS for you. I'll make it through. We zebras are fighters, right?
But since I haven't been so active with journals and such, I wanted to start a discussion that we can cover, to help and get the gears turning.
I think that a good thing to cover would be coping mechanisms.
For anyone who deals with a chronic condition (physical and/or mental) this is a big topic that you are probably all familiar with working on, even if you haven't had a label to slap on it. It could be escapism or distraction or things that make you feel motivated, productive, or give you hope; just a way for you to try and make it through a bad situation.
As zebras, we've all been through some hard spots, just because of the experiences of our health, But there are many reasons to try and seek comfort in an activity or way of thinking, so this conversation isn't limited to just health situations. Coping mechanisms are tools that people use to get through the things that make you feel like, maybe you just aren't strong enough to get through this.
I wanted to ask all of you, what kind of coping mechanisms do you use?
What have you found helps?
Are there things that work for some situations but not others?
Do you have a story about how you discovered a particular mechanism or a time when one could have saved you?
You can take your time to discuss this because it may take me a little while before I'm well enough to take all of this information you share and make something from it, but I really am curious about what you all have to say on the matter. If you don't feel like talking about this publicly, you can also send me a note.
After this discussion is over, I'm going to take all of the information that I gather to write something about this. It's an active project so lets just see where this leads. The more input the better so don't be afraid to speak up. This is a really good topic to be open about and in the end, sharing the things that help you personally may just help someone else who hadn't thought of that. Lets turn this into a real discussion.
-Michaela
------
Personally, I've experimented with a lot of different coping mechanism. When I was between 12-17 I used to make stories. Hundreds and hundreds of stories in my head. It was my escape into my own worlds. If one story wasn't working for me, I would pick up another. I probably spent more time in my head than outside of it! I used to read too. So many books. Which inspired more stories!
But then at 17, things got harder. I was struggling to lose myself in the pages of a book like I used to and the stories... were becoming more and more out of reach when I took medication.Thankfully that was when I discovered RolePlaying. You mean you can actively live out this stories with the added unpredictability of another person's thoughts and ideas?! Count me in! Rping got me through some of the worst experiences in my life.
Currently, I have been struggling. As my physical condition declines I get a strong and stronger need to control my environment and my actions and be productive. It's a struggle now that it's caused some major anxiety and has now developed into OCD but I am doing what I can. Now that I also have a mental need for coping mechanisms rping maybe hasn't quite been enough. I've been working on combinations with music and such but my need to feel productive and my constant frustration with myself gives me trouble for sure. Improving in drawing helps. I've been pushing my limits like crazy in the last year to improve and learn. I also do research and counsel people, taking on between 2 and 8 clients at a time.
That is all fine and dandy.... as long as I have control. A month or so ago, I lost that. Everything suddenly exploded in my face. I stopped sleeping. I had to apologize to my clients. I could hardly draw without feeling overwhelmed because of all the projects that I'd piled up for myself.
So. That is why I am currently working on some things. I will get better. Music. Relaxation. Rping. I tried interactive games but that hasn't worked much. The biggest thing is covering the clock on my computer. Time ties into the need for control so. I've got some great support and as I start to do physically better, I'm sure that I will do mentally better. I've just had some really rotten luck lately.
------
So enough about me!! Members, this is an active discussion! What are you thinking? What have you done/do you do to get through the bad? So far your comments have been eye opening!
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Underdark metaphor and connections, which sort of goes over to a WordPress blog.
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A Section For Discussion About EDS Management?
Would you like a category here for "EDS / HSD Management?" It may be a bit empty at first, but I'd encourage you to share important (and maybe life-saving) things you've learned through time about how certain medical procedures and drugs may not interact well with somebody who has EDS (or related conditions.) I think this can be especially useful for those who were recently diagnosed, or someone who is a caretaker of them.
Some topics for discussion (maybe):
o Particular brands / types of mobility aids you recommend
o Exercises for at-home physical therapy
o Medicine contraindications / lesser known side effects you should know
o More ways t
We Have Another Co-Founder?
🦓✨Hi Zebras!🦓✨
My name is Doc, and I've been looking for people who share similar experiences to mine for some time since I had been diagnosed with classic type Ehlers-Danlos syndrome, shortly followed up with muscle atrophy that was caused by a series of intentional medical malpractice incidents. As a clinical biochemist, I'm researching degenerative diseases, hormones, and a few other things.
It means a lot to know there are others who have similar problems. This might be why having a community is important to them.
I plan on making the group more active. Recently, I was invited to be co-founder by the owner
Hello Zebras
:thumb307287490:Hello Zebras :thumb307287818:
It's been a long time since you heard from me and I am curious if we still have any active members! I haven't forgotten about all of you but life has definitely been taking its toll on me. I have been very sick and have only been getting sicker but I am still fighting.
:thumb325394346:
I would love to hear from you all and hear how you are doing. =)
Have pride zebras and keep on dazzling!
:thumb307287325:
EDS Awareness Month
:thumb307287490: It's May again :thumb307287818:
and you know what that means!
I know that this group isn't very active. I've been struggling with a lot of illness these past few years. But I would love it if this month everyone submitted their EDS related artwork in honor of this month and spreading awareness for this horrible condition that plagues us.
And notice for all members, especially new ones. You can send me a note any time. If you post a message on the group here I might not see it thanks to the fact that DA does not give me an alert about those for whatever reason. But if you send me a note, I promise that I will respond. I am o
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Here in the UK, hypermobility is less recognised & when I was a child, wasn't heard of virtually at all - I'm now 36 & have a lovely 2 & a half year old daughter, Evie.
Evie, has inherited the condition from me. I inherited it from my mother who is now, at 65 suffering the effects of osteoarthritis & she inherited from her mother who thankfully only has extremely flexible fingers & no other issues.
Evie was diagnosed just before she was two, but when born she came out with her bendy fingers crossed (I had mine crossed for luck at the time too!) & when her hips were checked for dysplasia I questioned the clicking sound they & her ankles made. The nurse commented that newborns are always more flexible...she certainly was!
Evie met all her physical milestone late, sitting up, crawling (she didn't, she did what we call the bum shuffle) & she has only been walking for four months (although now she can run & climb!). I also walked late, which was put down to me being lazy. Because of the late walking we were referred to a physiotherapist who diagnosed both Evie & myself as being hypermobile.
Everything made sense & clicked into place, unlike our joints which tend to click *out* of place lol. Thankfully Evie doesn't seem to suffer any pain at present & when her ankles & wrists dislocate she finds it hilarious. She is a little wobblier than her peers & more prone to falling over, but she doesn't stop trying new things, like I did.
For me at 36, I noticed my condition go downhill whilst pregnant. Pregnancy hormones loosen ligaments to make room for the baby & ease birth. I suffered with painful carpal tunnel which took over 6 months to go away. My rib cage was agony & now my breastbone is tender when put under any pressure, almost three years on!
My knee dislocates frequently, but at least it has the grace not to hurt any more when it does so! Main pains are in my back & hips - I work with children & this active job definitely contributes. But it's not all problems, my engagement ring got stuck just after Christmas & I was able to remove it without firefighters cutting tools by dislocating my finger!
I do worry about my mobility in future, as I ache so much from just a normal days activity, but not so much that I am disabled by it. & I make jewellery, but sometimes my hands just let go of things if I'm not paying attention. I can't imagine this will improve. Mainly though, I am pleased that after a life of being the chubby, clumsy one who couldn't master riding a bike I finally understand why! & in time that I can help Evie adapt to the condition too.
~*Ruthie*~
Evie, has inherited the condition from me. I inherited it from my mother who is now, at 65 suffering the effects of osteoarthritis & she inherited from her mother who thankfully only has extremely flexible fingers & no other issues.
Evie was diagnosed just before she was two, but when born she came out with her bendy fingers crossed (I had mine crossed for luck at the time too!) & when her hips were checked for dysplasia I questioned the clicking sound they & her ankles made. The nurse commented that newborns are always more flexible...she certainly was!
Evie met all her physical milestone late, sitting up, crawling (she didn't, she did what we call the bum shuffle) & she has only been walking for four months (although now she can run & climb!). I also walked late, which was put down to me being lazy. Because of the late walking we were referred to a physiotherapist who diagnosed both Evie & myself as being hypermobile.
Everything made sense & clicked into place, unlike our joints which tend to click *out* of place lol. Thankfully Evie doesn't seem to suffer any pain at present & when her ankles & wrists dislocate she finds it hilarious. She is a little wobblier than her peers & more prone to falling over, but she doesn't stop trying new things, like I did.
For me at 36, I noticed my condition go downhill whilst pregnant. Pregnancy hormones loosen ligaments to make room for the baby & ease birth. I suffered with painful carpal tunnel which took over 6 months to go away. My rib cage was agony & now my breastbone is tender when put under any pressure, almost three years on!
My knee dislocates frequently, but at least it has the grace not to hurt any more when it does so! Main pains are in my back & hips - I work with children & this active job definitely contributes. But it's not all problems, my engagement ring got stuck just after Christmas & I was able to remove it without firefighters cutting tools by dislocating my finger!
I do worry about my mobility in future, as I ache so much from just a normal days activity, but not so much that I am disabled by it. & I make jewellery, but sometimes my hands just let go of things if I'm not paying attention. I can't imagine this will improve. Mainly though, I am pleased that after a life of being the chubby, clumsy one who couldn't master riding a bike I finally understand why! & in time that I can help Evie adapt to the condition too.
~*Ruthie*~