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What is a positive coping strategy you use to help manage your CFS?

What are some coping techniques and strategies that help you when you are feeling overwhelmed by your chronic fatigue syndrome symptoms? What strategy have you found to be the most helpful?

Maybe you carve out time in your day for activities or hobbies you enjoy, or you monitor your symptoms and mood in a journal.

Let’s help one another add to our self-care tool boxes in the comments below. 🧰

#ChronicFatigueSyndrome #ChronicPain #ChronicIllness #COVID19 #PosturalOrthostaticTachycardiaSyndrome #AutoimmuneDisease #Spoonie #Fibromyalgia #IrritableBowelSyndromeIBS #Migraine #Depression

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Some thoughts on #SuicidePrevention

First off, I wrote the following e-mail to the program running the "BE THERE" certificate program for young adults, ages 18-25, which is the age group of focus. This is the entire e-mail that was sent.

"I read the full information page for the Be There certificate, and I thought something that I found was distressing.

I understand that suicides are on the rise amongst the younger generation. I also understand that the about need to keep social interactions to a minimum during the beginning of Covid-19. I understand that this isolation has changed the way we, as a society, interact now that Covid-19 is more "mainstream". I further understand that the younger generations were and are the most affected by the isolation. I got all that. I truly do. I think what you are doing is wonderful, kind, NEEDED, and UNDERVALUED by so many.

If you will notice, I highlighted NEEDED and UNDERVALUED. This is because suicide is NOT just a younger generation problem.

It is both needed and undervalued because people still do not believe in changing how we treat mental illness. (Yes, I know that not everyone who commits suicide has a history of mental illness.) We certainly do not change how we treat each other or ourselves. Imagine, just for a second, if everyone takes the class. I mean everyone in the world. They take it and it actually means something to them. Why? It's because suicide touches us all. It's not just the person who died who is in pain, they leave pain behind, as any death does, yes , but this is different. There's always that thought or someone says it, "I wish they'd reached out for help." Or, "I didn't even know that s/he was so down. They always were so happy".

SUICIDE IS A COMPLETELY PREVENTABLE DEATH, in at least 90% of cases.

No, no, no this is a WORLD problem. Suicide is a mental health situation that anyone, everywhere in the world can think of at any moment in time. There's no age limit. No country boundaries can stop it. No amount of anything can prevent it from creeping into someone's mind at any time.

As you know, the Be There certificate was developed in Australia and centered on using kids and young adults from all over their country. I'm distressed by this fact.

((Given, the age range chosen is prime for teaching the warning signs and how to help. Their minds are still in the learning stages of life and stress is just starting to make itself known on how to be an adult and all the responsibilities it comes with. (Let's face it, Millennials are not the brightest in real world situations after learning nothing, except how to prepare and take a test, in school and keeping their noses in their screens their whole life) ).

This program should include everyone else on Earth, too. A representation of all the age groups, the races, the cultural differences, different religions, and any other way to let a person see that there is someone like them, someone else facing their demons, as well.

I only suggest this because as we age, A: we forget things we don't use every day, B: there are different situations to be addressed in each (even if the overall goal is the same) and, C: people who are older have more options for help (or less depending on their situation, i.e. no insurance, homelessness, unable to attend the appointments due to another problem). Older folks who are facing suicidal thoughts, ideations, intentions, attempts are often not taken seriously, as well, if they have a reputation for mental health illnesses. Furthermore, there are more single people commiting suicide than married. Probably because there's no one there to notice that they are different. No parents or friends coming over like when they were in school. Now it's work all day and there nobody really cares.
More often than not, younger people are taken more seriously, watched carefully by friends and family who noticed the differences in behavior, food consumption, or something that feels off. They see the person every day. They might even live with them, like their parents, if they're still in school.

The differences that stand between us as a society are great. We can all agree that suicide is a heart-wrenching, breathtaking, horrible way to die; and not just for the person who died. But, the thoughts that lead to suicide, the hurt inside, is often not just hard to discuss for emotional reasons, but also because it is not allowed in the culture or religion, or even a relationship with someone. Those types of situations are even harder to breach the wall of hurt and get some help in to the heart and mind. Some of the people around the world do not believe in mental illness. They don't believe that there are invisible scars on ALL of us and their delusion only hurts them and the others in their life more. That type of situation is more prevalent in older generations. Personally, I have found that the younger generation gets much more attention than any other section.

The options for the older generations are much different than for young people. Older folks have to be able to A: afford insurance, B: get an appointment they can afford (good luck), and C: have to find their own way to get to the appointment. That adds stress and more problems to someone who has already hit their limit (given the situation we are talking about, I think that's fair enough to say). Between work, children, and other obligations that they feel they HAVE to attend to just so someone won't become suspicious and ruin their plans, getting help just doesn't fit into their schedules. And, that's another reason. Adults have more life experience and if they are serious, they will know how to hide their intentions. If they have the strong belief themselves that mental illness doesn't exist and nobody can help them, they WILL keep it to themselves in every way. There will be no chinks in their armour. Also, those facing homelessness or drug addiction cannot exactly be easily reached or even noticed by society. Does that make them less than the average Joe, who desperately needs rescuing?

The youngins still often have parental insurance and involvement, the government offers programs to kids and young adults (18-25 is available) to prevent suicide. There are homeless youngins yes, however, there are guaranteed options for young people who are homeless, for getting the government help, and not just with mental health. (Often they will offer them immediately and try to get them off the streets as soon as possible. They'll also be more willing to help a kid who still has a future than an older person who has seen their good days. How is that fair?

There is free counseling available, true, for all via #988 if you have access to a phone, however, they are unreliable at best.
See link at the end for the 2nd reason I feel that way. The first reason is that it also happened to me.

My point, yes, indeed I have one, is that while I appreciate and absolutely applaud your attempt at suicide prevention (which is working in a LIMITED AGE GROUP) needs to be expanded. Do some consulting. Do some real research. Really look at situations that real people have been through, the really hard ones. Try and understand what the real OVERALL reason is that leads to suicide in each one. Pain. (Looky, I was nice and gave you the answer.) It could be disguised as guilt or anger or some other feeling nowhere close to revealing pain. How do you really help pain? Think about that, please.

(Given that everyone is entitled to their emotions and you cannot compare lives to another because everyone goes through their own things that effect them differently than others.) But still, pain, is what needs to be addressed. Furthermore, how not to inflict so much pain on one another throughout our life interactions. Human beings are the very cause of all that pain. We need to be nicer to each other. Respect one another. That needs to be taught in with a suicide preven...

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remembering to be well

My story -

I grew up in the 80s/90s where being “double-jointed” was just a weird quirk/party trick. Well, the women on both sides of my family were affected pretty hard by the hypermobility.

I was 12 when I had my first ever dislocation (and first signs of POTS). It was summer and my house was unairconditioned in Texas. I was helping my mom with dishes when I started to feel slightly dizzy, so I held onto the counter-top.

When I woke up after fainting, half of the dishes were broken on the floor around me, my mom was crying, trying to wake me up, and my elbow hurt. I was taken to my PCP, who had no idea what was wrong with me, but took xrays of my elbow and suggested that I drink more water.

And so, began my relationship with different doctors – specialists, primary care, whoever I needed to see, I would. But, besides being anemic, dizzy/prone to fainting, and hypermobile joints, no doctor had any clue what was going on with me.

Flash forward to age 28(no, really, 28), when I’m working for an established optometrist, he noted that I hyperextended my knees when I was standing tin place; he recommended that I see a rheumatologist/cardiologist because his wife and 2 children had vascular EDS(which if you know ANYTHING about EDS, you do not want vascular EDS).

So, I went to their specialists and was diagnosed with hEDS, POTS, Ankylosing Spondylitis, bursitis and inflammatory arthritis – after years (as in 10 years without any sort of diagnosis) of bloodwork, CT scans, MRIs, etc. My doctors then placed me on a host of medications, including a TNF inhibitor, which essentially made my immune system go bye bye – which my doctor elected to begin 2 weeks prior to the big shutdowns due to covid in March 2020.

When covid began, we had a host of friends that didn’t take things too seriously with restrictions, but understood that we(my partner and I) had to because of my new health findings. We didn’t have to worry about going to the stores because of grocery delivery options and restaurant delivery and our friends at that time would also bring by dinners, etc, since we couldn’t go out. But, empathy fatigue is real. After about 2 months, our “friends” started going back out again(Texas did not take covid seriously, at all) and we were kind of left behind.

I still have no immune system, cannot go to concerts, clubs, etc – which is starting to weigh heavily on my partner, who loves interacting with other humans. But those "friends" are all gone now and the loneliness of

My life looks completely different than I thought it would at this point in my life – I was an avid roller coaster enthusiast, but I know that this part of my life is behind me, along with most exercise, and my sex life (what sex life?!) – but I’m pushing through and trying to make the best of my life as it stands right now.#AnkylosingSpondylitis #Bursitis #ChronicPain #Depression #EhlersDanlos #JointHypermobilitySyndrome

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The Darkness and the Road to finding the Light

As Mental Health Awareness Month draws to a close, there is a lot I want to say, but the words and thoughts swirl. This isn’t a pity party, it is what I hope will show strength and dignity… but most of all acceptance to say “I can’t keep going this way”.

To look into the eyes of darkness and to realize what it was and to stand up and say “I need help” that and even now was one of the hardest things I ever had to do. The biggest part of this journey is saying “Suidcide is Selfish”, in a lot of cases, that is so 100% not true and comes from judgment towards someone who is sick. “What about my faith” some would ask, my faith is the only thing that kept me going in recovery. It was the same talks by Jeffrey R. Holland and Dieter F. Uchtdorf that kept me going.

What has the journey over the past year shown me…. I was given a deck of cards stacked against myself and my husband that we had no choice but to keep drawing losing hands.

I suffered a severe Traumatic Brain Injury on 12/31/2019 and by the time I was ready for all the help I needed to recover, the world shut down. No physical therapy, no speech therapy, and no occupational therapy. We met with my sports med doctor, but even to meet with a Neuro back Opthamologist… I had to wait. I waited until almost July to receive treatment and only then, did I receive Physical Therapy. It became my husband and I to figure out how to do other parts of my recovery without medical care. I eventually became the patient and the caregiver over time… gone was “NO, it is too soon for this” and it had come to me challenging myself to do things. Not having patience, grace, and empathy.. It was “You know you knew how to do this before so go do it” I would fail each and every time. I wouldn’t rest my body, I kept going and kept having setback after setback.

When we moved to Utah, I felt like I HAD to be better. I didn’t set up the help I needed and the masking of life began. strived to mask my injury, the subsequent lasting effects I was trying to get over, and the mental exhaustion. I went and did things I was 100% not ready for and when I couldn’t do it… I thought that everyone was passing judgment. I didn’t want to be the patient anymore

Social Media was no help, I had joined a few TBI survivor groups that also had caregiver members. Little did I know what I was reading was not someone in my position as a patient should ever read. Caregivers divorcing their spouses left and right because it became too much over the years. I feared 100% that I was going to lose my world and hurt everyone because I, the TBI patient, could not figure out life at all.

Last fall, I hit about the lowest point. I was about to learn the lesson I hated most “Time was my enemy and Time was my friend.” I sat in the dark about a year ago, with a bottle of pills. I felt so lost and I was angry. I didn’t know why…. But I was just angry at what I was. Existing to Fail. My only accomplishments were failure in my eyes. I had failed myself, my husband, our blended family, my family, my friends.

I did end up taking the pills and regretted it. I felt like I didn’t deserve this amazing gift of Life Heavenly Father gave me. I learned in the week after, I wasn’t alone. People showed up, we had a support network for myself, my husband, and our kids. I wanted to recover in dignity and we tried to have our kids outside of the darkness I was battling.

However, my entire life shut down again. No working, no household management, nothing… I was to sit and recover. It was as if it was early 2020 for me all over again. I started therapy immediately and until I could get in for my first session, #988 became a lifeline. I used every tool I could get my hands on to stay safe. Things changed rapidly and it wasn’t until Thanksgiving I was even able to cook again.

As I started to recover, I realized, while Covid took a lot from everyone, it took my recovery. I did not have the care I needed to be safe and to recover. We did the best we could and the strive to not fail was a perfection that I would never achieve.

1 year later, I am healthy. I realized I wasn’t selfish for wanting to end it all. I was in a place that felt extremely hopeless. One thing didn’t just put me there… It was time and a series of events that I didn’t have coping skills to handle.

People with TBI’s no longer have fully functional brains and no one injury is a like. The chemistry is altered and things like ADHD meds, Anti - Anxiety Medications, and Antidepressants are hard to figure out because your brain has some mis-fires.

Even beyond that, you can’t just go to someone who is depressed and say “Cheer up” and expect them to be like “OHHHH I hadn’t thought of that” Often depression is someone that you can’t find your way out of. Life compounds on it and you don’t have a healthy outlook. Some, like me, won’t ask for help. We feel as if we have become a burden

Often we hear after someone chooses to take their life “I never suspected they were in trouble” however, you look and start to see the signs that something wasn’t okay. Take those signs and be observant. Anger is often one of the signs someone isn’t okay, they are just angry at everything and it’s because they don’t know what is going on. Complacency is the scariest part, they are accepting that there isn’t help and now how are they going to fix it themselves.

It isn’t selfishness at all, it is being so far gone in a thick, dense, black fog, that light can’t reach. The person is normally scared, unsure what to do, and looking to stop the hurt. No one wants to be in pain.

A year later, I am 100% on a good path to continue to recover… I can say I remember a year ago, and I still have to remind myself to breathe because it scares me what I was in. I am safe now, but that place was the scariest unknown I have ever been in.

While everyone could have said “you need to do this”, it was ultimately up to me to do the work to get better. I had to look long and hard in the mirror and want to live for the person I was staring at. Looking back at pictures, there was no life in my eyes or my smile. I was faking every second. I now know I am worth something and I pray I never go back into the darkness. I have safeguards in place and I now know the path I was on, it wasn’t anything I could fix. I needed medical professionals to help me recover from something that took away my ability to walk and talk. My husband could not be a caregiver 24/7, we had kids to keep entertained in quarantine, he had to work, there were things… we just didn’t know the lack of medical care at the time would impact me so greatly years later. People can mask and act like it’s all good and be hurting so much on the inside…. And the biggest lifeline anyone in any relationship has… is communication.

#SuicideAttemptSurvivors #Suicide

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4 years , 7 specialist and no one knows !?!

So to start off

I have depression since I was a kid and was diagnosed with BPD in 2019 after a failed attempt on my life , I ended up 1200 feet at the bottom of a canyon in my car with a broken neck and back !! I have long since fully recovered !!

So my Dr thinks I’ve been Covid “ vaccine “ injured !!
Not going through the hole Storie but I will tell you my symptoms … I have Vertigo , Tentunus - loud in both ears , very low energy and I have gone def !!! And it all started a week after the first shot !!!!

After 4 years and 7 different specialist , different meds and lots of tests , no one has any idea what is wrong with me !! 😟😢

My Dr says , the reason no one knows what wrong with me is because no one knew the side effects of the Vaccine when we were told to take it !!
I’ve been jabs 3 times with the same Vacc !!

This sucks so bad I’ve thought of taking my life many times to end this suffering !!
How will this ever be fixed if NO Dr or Specialest will listen to me when I talk about the Covid vaccine !?!?☹️☹️🇨🇦
Why are Dr’s so afraid to talk about this or help ?????

(edited)
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I never asked for this Covid Vacc injury , over 4 years of this Bullshit !!!

OMG !! This has to be one of the worst days , more than usual I’ve had in some time !!! Can’t seem to wake up , can’t hear anything but the loud ringing in both ears and I’m off balance !! Like what the fuck !!!! I really want this to stop !! I feel so alone 😢🥹☹️

(edited)
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Dark Design

I've made a few designs for T-shirts that I sell on a few sights. I started doing this when Covid hit and I started working from home and had less hours. The point is I guess is that I've been feeling so sad and low, just hopeless and feeling hatred for myself and everyone. I feel like I just don't care about anything anymore.

I designed a T-shirt that is simple but just very dark and I put it up on one of the sites that I'm sure no one I know goes to anymore. I chose not to publish it at the last minute but it is there and I can make it public whenever I want.

I've got something to do that has been a long time coming but I just need to put things in place before that time comes. I think it might be soon. Just not soon enough.

#Depression

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Today I have a plan

Yesterday my caseworker called me to find out how I was doing since we had to cancel our session last week due to me being sick with con crud. She told me that there is an event going on at my facility that I go to for my mental health services. They're doing what's called a vax bash. They're doing vaccines for COVID and the flu and a few others. They're also serving lunch and I guess there's door prizes. It sounds like a fun event. She said she would try to get me transportation to go but I haven't heard back. I really hope I can go.

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