chronic illness EDS

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chronic illness EDS
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What’s your relationship with exercise?

While it’s true that exercise is important and benefits the body and mind in many ways, exercising with a chronic illness like EDS isn’t always as straightforward as it seems. EDS-ers have to take into consideration that some types of movement may do more harm than good for their joints, while also being mindful that de-conditioning happens more rapidly in folks with connective tissue disorders. Listening to your body (and medical advice!) and being realistic about your tolerance and pain levels can help determine the best exercise regimen for you.

It takes a lot of trial and error, but taking care of yourself is worth it.

What’s been your experience with physical movement and EDS?

📖 Here's a Mighty read about exercising safely with EDS by fellow zebra @sarah-saidee-kelley :
What Happens When I Try to Exercise as a Spoonie With EDS and POTS

#EhlersDanlosSyndrome #RareDisease #Hypermobility #ChronicIllnessEDS
#HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
#MentalHealth #Anxiety #Depression

What Happens When I Try to Exercise as a Spoonie With EDS and POTS

"I pull my extra large yoga mat out of my closet and unroll it on my floor. Already my heart rate is climbing. Surely this counts towards my exercises..."
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Coming to terms

My trigger some

went in for a yearly check up with my primary Dr. I explained that my carpal tunnel is so bad that many days I just want to chop off my hands they hurt so bad. She sent the request for the test that has to be done before they'll do surgery, I'm praying it won't be to long before that can happen. My swollen ankle which hurts to walk on will also be taken care of at the ortho. I had explained that I had made a list to keep track of everything I've been diagnosed with from typical like needing glasses to more troublesome likeCOPD. Then there's the RA in my hands that nothing seems to help so they hurt. To the more severe, hEDS which causes too many health problems. Anyway my list has 42 conditions listed. I never remember many when seeing a new Dr. I explained that is mentally overwhelming and I just can't handle any more. If you find anything else wrong with me, treat me but don't tell me. She asked if I got my mammogram done. My reply; nope, I don't wanna know and I wouldn't get treatment anyway. She asked about my colonoscopy, I said I canceled that in March, cause I don't wanna know. I explained I'm in so much pain every single day and at least one day a week it has me in tears. I'm not suicidal but I don't want to live another 5 years. For me that is. Each year that goes by the pain has only gotten worse. Not much helps it and nothing takes it completely away. For my family I would love to live along time. I've been a DNR close to 10 years. I was honest and told her I relapsed on my methamphetamine because it numbs my brain some. But it also caused. Yet my flashbacks came back. I'm assuming cause I stayed high while with my abuser and when I'm high and my brain numbed I don't have to control to stop them before they escalate. If that makes sense. She said she perfectly understands how I feel and asked if I have a living will. I told her, it's not on file here but my ex-husband has been me POA for the past 14 years since I made it.

Sorry to unload all this on everyone here but it feels good to talk (even a one sided conversation) to people who do understand. Most of my family tries to understand but the worst thing they get are menstrual cramps or migraines. I'm not saying they don't have the normal getting older stuff. But their pain goes away. Mine never does. Day in and day out, pain pain and more pain. Just different areas and different degrees. It's just it's gotten so much worse since even last year. Back then I didn't think it possible. Often times I wonder why God didn't allow my ex to kill me. Then I wouldn't be in such pain and he couldn't continue hurting people. But I know God's plan is not for me to understand. Then there's the whole everything happens for a reason and there is a silver lining in everything. We just have to look and be patient until we find it.

Thanks for reading to the end.
God bless you all.
#ChronicIllnessEDS #MentalHealth #ChronicPain #AbuseSurvivors #EhlersDanlosSyndrome #Addiction

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A letter written in jail Dear God,

I want to give you an eternal Thank You for always providing for me during my life. I live each day with the faith that you will always allow me the tools I need to not only survive but to thrive as well. I also want to thank you for making me stronger due to all the learning experiences I received. It doesn't matter whether I enjoyed them at the time, I still learned. You gave us free will, so it's up to us to live right, or we have to accept the consequences. All the knowledge I have gathered, I willingly take it with me and share with whomever may ask for it. If it be life experiences or knowledge of your word, I do my best. I also want to help all of the wonderful people who have already helped me along this journey and to the individuals who will help me in the future. I can remember certain things that have happened that I know we're miracles from you. I also believe that some of your Angels here on Earth have crossed my path a time or two. I thank you for those as well. Each and every day I am able to see the beauty in not only my surroundings but the people as well. I know in all this beauty lies great meaning and purpose.

I am also asking your forgiveness for all the foolishness and stupid things I've done in my life. From this day forward, I strive to be more responsible, and be a woman that can teach good instead of anything negatively.

Amen #ChronicIlless chronic pain #ChronicIllnessEDS #MentalHealth #PTSD #Abuse

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I had been flashback free for close to 6 months. Yes I might feel like one was coming but I could rethink my brain and it wouldn't come about. I hope that makes since. A couple months ago I started having them on occasion but with new triggers. Pain I found out will bring them. Not good for someone who deals with pain 24/7. Just different degrees of it. Last night my best friend and lover picked me up so I could stay with him for a couple days and he could massage all my sore muscles from spring cleaning my daughter's home while they were gone on vacation. I'm use to let's say my lower back and feet hurting, or shin splints. But when my thighs don't want to support me cause I over worked the muscles with the basement stairs, my feet hurt, carpal tunnel in both hands/arms have me in tears a couple times a day, my entire back hurts, my left shoulder aches, left ankle was swollen and left hip and knee hurt. That's too much for anyone to deal with. I was fine until 5-10 minutes into my legs and feet being massaged. I have never had one from being touched in that way. So he stopped. But I continued to have flashbacks that my reactions were strong. Yelling, pushing him away, saying get off me, crying. He helped me get control of my head back within a few minutes but this went on for about a hour +. I know between my body and my head, I've been saying I don't know how much more I can handle. I'm not suicidal. I know that I say I can't handle anything else, but like always I will push forward and telling myself, the sun will come up in the morning bringing a new day that will be better. I don't think, quit lieing to yourself. Mornings lately my back seizes up while I'm sleeping and I can barely move when I wake up. Because I always try to find a positive in every situation (no matter how ucked up it is) I remind myself that I should be grateful that I'm still able to feel the pain. Some people have lost feelings in parts of their body. Ex. my uncle got in a motorcycle accident and was paralyzed from waist down. I am very grateful and blessed for every day I'm able to still use my legs.

WOW! Sorry for the rant. Didn't realize I needed to get all that out. As always, thank you for reading this and I pray for blessings on each and everyone of you. #ChronicIllnessEDS #ChronicPain #c -PTSD #PTSD #MentalHealth

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This really spoke to me so I wanted to share it. I found it on Pintrest.

Just in case no one has told you lately: You are worthy of the same love you give. You bring value when you show up for others, and also, when you breathe deep and simply live. You long to fully present. I just hope that just as much as you are present to others you are also present to yourself.

You see beauty in the life of others and the stories that they tell. I just hope you know; as you listen, you are worthy of being heard as well.

You love others so well.
You see where Light pours through.
May you know the same love you give, you are worthy of receiving too.

#ChronicIllnessEDS #PTSD #MentalHealth #AbuseSurvivors #ChronicPain

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Fed up and lonely

#ChronicIllnessEDS #SpinaBifidaAwarenessMonth #ChronicFatigueSyndromeampME #FunctionalNeurologicalDisorder #Endometriosis #SleepApnea
My husband is frustrated, annoyed and always mad at me at the moment. I have the above conditions and juggle 3 businesses. I’ve been through a high pain flare recently so yes I’m on the sofa watching TV to recover. My husband does work long hours, he’s also self employed, drives many hours and is having a rough time at work.
I feel like because he’s having a rough time he’s turned into a bully at home, I try to stand up for myself but it’s really tough on me emotionally. My mum and dad are both narcissistic I feel that I have no one to turn to. There’s only clients in my life, no true friends to turn to. That’s because when I’m not working I’m recovering, friends aren’t interested.
All I want to do is run away and hide to get some peace. I’d stay in my Horsebox but I need electricity for my Cpap machine & fan that I have to sleep with. I’ve no spare cash for a hotel, I just don’t know what to do.
I thought maybe posting on here might help

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Frustrated, Depressed and Hopeful at the same time!


I haven't been on in a week or little more. I love all the encouragement here, and at the same time can't handle hearing others issues. Makes me feel like an azz cause he I am venting. My head is kinda messed up again and my flashbacks are back. I went to my daughter's yesterday to watch my youngest two grandsons. Actually my daughter offered to pick me up so I didn't have to walk the half mile in the heat. When I asked about my oldest grandson she informed me that he was several hours away but coming back that day as he had a severe breakdown and had to get inpatient treatment. Bipolar and Sciz (never could spell that word); my ex-husband has the first and my middle child has both. I have major anxiety and depression. She asked me not to tell anyone as it wasn't announced to outside their household. When I first heard it was like getting punched in the gut. Had to fight my head in convincing myself I was a good parent. My sons first time in inpatient he was eight. What I didn't understand until around 5 years later was that he heard voices (at very young age) that told him to hurt or ki** people. I had to learn to read his body language, moods, tone of voice and think three steps in front of him to prevent any violent outbursts. He went through trial and error will a multitude of medications before the proper cocktail was found. But he had numerous meds that he had adverse reactions to. Ranging from hand tremors, eye twitching, weight gain and seizures to name a few. He's in his middle twenties now, able to not be on any medication and is doing well. Yet he hates me for all the placements "I" put him in. Of around ten, I asked his doctor only once to please place him as I needed a break. The other times either his doctor or the school was persistent that he needed more help than what I could give. I explained to him that "his behavior is what sent him each time I had to take him. All I did was sign the paperwork. Back then I was afraid if I hadn't taken him for the help I know he needed that the school or doctors could have him taken from my care.
So now my grandson is facing the same hard road. My daughter also has more milder Bipolar yet is in denial. From what my daughter told me was that her and her wife had gotten into a huge disagreement/fight and my oldest grandson lost it. My daughter-in-law is staying at her parents and they are leaving for a 3 night 4 day family vacation as planned. When they returned will be going into counseling for the family. My son's actually live together and last week I received several phone calls from the youngest fiance saying they were fighting will the first one saying they were close to becoming physical. I had already been on my way there but after that phone call disregarded the actual speed limit and made my own. Surprised her when I got there sooner than expected. The third call came in the midst of my severe head cold and was miserable. My oldest called and after I talked with them both over the phone I told them I am not coming as I could not safely drive, that they are both adults they need to figure it out themselves and the needed to grow the **** up.
Today I drove a friend to run some errands and he triggered me but I could control my reactions. He tells me every time I take him somewhere that he has PTSD when riding in a car. So he's saying; your speeding, slow down (only once was I going more than 5 over the limit). Grabbing the handle at different times, etc. I explained that I understand PTSD and I'm actually a very good driver. When I asked where his ptsd came from, he said he didn't really know as he hadn't been in an accident unless it was when he was little and don't remember. But my ex (abuser) would constantly criticize my driving. Yelling even, and threatening. Once he made me pull over as he said I turned the corner at the light wrong and he was driving. Well, let's just say that was the second time he made me walk home.
On a lighter note, I should be getting my apartment soon. I'm praying it's this week. I will be calling the lady in the morning and asking when I'm supposed to come sign my paperwork so I can move in. I'm so tired of couch hopping. Carrying my things that I'll need for several days everywhere I go. Been doing that since end of January. As grateful as I am that I've been able to do that and not be out on the street, it's old. I'm old! Or at least my body is.
I was talking to my uncle the other day and I told him that I had written down everything I've been diagnosed with because I always forget and just tell the doctor that I've listed the major issues. But with listing my hearing loss and requiring glasses to plantar facility's to carpal tunnel syndrome to hEDS to C-PTSD I have been diagnosed with 47 different things. When I go for my yearly physical next month my doctor isn't going to be happy because I haven't gotten my mammogram or my colonoscopy done. But as I told my uncle, my head can NOT handle knowing anything else is wrong with me. I don't let any of them define who I am. Yet in some ways they do. My triggers for my flashbacks define me, as does my anxiety and pain. Everyday those 3 I deal with 24/7. I'm like trust me I know I have medical issues, major non life threatening one. Even if I did take those tests and they found something wrong, I don't know that I would take measures in trying to make things better.
Every year for the past 45 years I had been diagnosed with something new because my body is slowly deteriorating. This past year, I've gotten 4 new diagnosises. When I asked my uncle if he had seen where I gave his birthday wishes he said yes and thanked me. Then we were talking about age and medical problems. I told him that I don't want to live to be his age (73) I'm 52 because of how my body already is. Yet I want to live and see my grandsons grow into men. It's days where I allow myself to think deeply about myself that ... it's just very depressing. I always bring myself back up to being positive.
I do apologize this is pretty long. But I thank you for allowing me to express myself and vent. I appreciate you all for reading it through. May God Bless each and everyone of you! #PTSD #c -PTSD #ChronicPain #ChronicIllnessEDS #MentalHealth #DomesticAbuseSurvivors #EmotionalAbuse

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What "habits" help you cope with your EDS symptoms?

Having a chronic illness like EDS can mean learning how to adapt and adjust in a moment's notice due to daily challenges like joint instability or pain or fatigue and GI issues.

What have you found that helps you cope with the sometimes unpredictable and inconsistent symptoms of EDS? What methods would you suggest others try?

📖 Want to know the "habits" or coping strategies of other Mighty zebras? Check out this article by Paige Wyant here: 22 'Habits' of People With Ehlers-Danlos Syndrome

#EhlersDanlosSyndrome #RareDisease #Hypermobility #ChronicIllnessEDS #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia #MentalHealth #Anxiety #Depression

22 'Habits' of People With Ehlers-Danlos Syndrome

"I'm forever stretching and cracking my joints."
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I found this on Pintrest and wanted to share. I'm not trying to affend anyone

Dear God
Enlighten-What's dark in me.
Strengthen-What's weak in me.
Mend-What's broken in me.
Bind-What's bruised in me.
Heal-What's sick in me.
and lastly ...
Revive-Whatever peace and love has died in me.
#ChronicIlless #AbuseSurvivors #CPTSD #ChronicIllnessEDS

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