Coronavirus Disease 2019 (COVID-19)

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    Really felt this today ..... #MentalHealth #Anxiety #Depression #Selfcare #CheckInWithMe #Insomnia

    Soo today wasn't a great day either. I really had all these ideas that I wanted to get myself up and try and spend quality time with the kids and even just go to the park area across from our home ,but after good intentions and going to local shop really briefly it literally hit me ,I could hardly move with the pain in my back and legs even using the crutches,I felt ad though walking while feeling the catheter iwas like something pulling at my insides every step I took,I felt anxious ,I felt my self start to have a hot flush in panic, while trying to remind myself I was fine and I would be OK. I literally felt in a daze for the next few moments until we got back to the car and then back home where I had to go for a shower and then right back to bed because I was in agony , luckily enough they were still able to go out to the park and play and have some fun but I just felt like such a failure like my body is completely failing me and I'm failing ad a mum.I can't even do the simple things I used to do with them now without a struggle or pain getting in the way .I got myself so upset and I just had to remember that it's just a bad day & even though it seems there's a lot justnow it's not a bad life.My two kids are amazing and healthy and hopefully and I'm sure in ways they don't see me in the way I see myself.I have decided I'm not going to put too much pressure on myself right now because I cannot handle the fails.Im going to take it moment by moment and day by day and if I manage to do something I wanted and was happy about then I'll be proud of myself and if not then il try again tomorrow. I'll try anything right now to keep myself from being back in that dark heads pace which is absolutely no good for me or my family. ♥️It was a bad day for me but I have plenty to be thankful for and my kids got more time with me than they have past few days and I even managed it out of bed and to go out to shop with them so I'll be thankful i managed that 😊 ❤️

    #MentalHealth #CheckInWithMe #Insomnia #Upallnight #SkinCancer #Endometriosis #COVID19 #longcovid #loveyourself #Bekind #Anxiety #Depression #Selfcare #PTSD #Parenting #GeneralParenting

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    Help with Invisible Disability research!

    Help with invisible disability research!

    Hi all! I'm sending another blast for my survey. I am a doctoral candidate (and spoonie) working on a dissertation that studies invisible disabilities and well-being. If you have an invisible disability and the time, would you mind filling out this survey? The survey is expected to take roughly 15-20 minutes to complete.

    Survey link: hofstra.co1.qualtrics.com/jfe/form/SV_diN5Ph8g7qwwVV4

    A HUGE thanks for everyone who has participated so far. Thanks SO much for your time and consideration!!! 😊

    #InvisibleDisability  #ChronicIllness #ChronicPain #ChronicFatigue #COVID #longcovid #LearningDisability #Dyslexia #ADHD #Autism #Migraines #Fibro #EDS #Endometriosis #Depression #MS #RA #RD #PTSD #BPD #CFS #SLE #Crohns

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    Help with Invisible Disability research!

    Help with invisible disability research!

    Hi all! I'm sending another blast for my survey. I am a doctoral candidate (and spoonie) working on a dissertation that studies invisible disabilities and well-being. If you have an invisible disability and the time, would you mind filling out this survey? The survey is expected to take roughly 15-20 minutes to complete.

    Survey link: hofstra.co1.qualtrics.com/jfe/form/SV_diN5Ph8g7qwwVV4

    A HUGE thanks for everyone who has participated so far. Thanks SO much for your time and consideration!!! 😊

    #InvisibleDisability  #ChronicIllness #ChronicPain #ChronicFatigue #COVID #longcovid #LearningDisability #Dyslexia #ADHD #Autism #Migraines #Fibro #EDS #Endometriosis #Depression #MS #RA #RD #PTSD #BPD #CFS #SLE #Crohns

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    Today's not a good day !! #MentalHealth #CheckInWithMe #Anxiety #Depression #Selfcare

    So today just isn't a great day ! Just can't snap out of this head space I'm in . In constant pain ,having so many issues with the catheter so hoping that this week they will do the #suprapubic catheter to see if its any easier and stops some of the problems.Struggling to get around even with the crutches, can't sleep and really anxious and worrying while waiting for the emergency ultra sound to check my lymph nodes to see if anything has came back (previous skin cancer) so just feeling constantly anxious. Just feeling really rubbish today and then silly because I know there's people way worse off than me and my issues probably seem so irrelevant 🙈but just can't get out of this negative head space today .

    Anyways hope everyone is having a good weekend would love to know what your all upto ??

    #MentalHealth #CheckInWithMe #Insomnia #Upallnight #SkinCancer #Endometriosis #COVID19 #longcovid #loveyourself #Bekind #Insomnia #Selfcare #Anxiety #Depression

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    I'm really trying , but it's such a struggle...... #MentalHealth #Anxiety #Depression #SkinCancer #Selfcare

    So I got out of hospital I am still on long term catheter which nurses are coming in most days to check etc ,but my bladder is rejecting it so it's only draining little bits ,my stomach is still bloating as I'm retaining alot and the pain is causing more pressure on my spine,I am in constant pain, I've never felt so damaged through everything I've dealt with till now,Had my emergency app with dermatologist specialist yesterday and she's not very happy especialky with ky history of skin cancer etc so she's put through for an urgent ultra sound scan to be done on my lymph nodes to see what it is and if needs to be removed. The waiting is causing me so much anxiety and my head keeps slipping to dark places like what if it is serious and I won't be here for the kids and tunns of other crazy things .I'm trying to keep focused on little things crafty things I enjoy or organising what I can while sitting on my pressure cushions or in bed ,but dealing with the worrying while in so much physical pain ,using crutches, literally can't do anything unaided ,,trying to keep things as normal for kids as possible, teying to be the best mummy i can right now when im literally falling into pieces and waiting to see if I have to have a suprapubic catheter interested into my stomach because of these issues everything is just too much right now .

    #MentalHealth #CheckInWithMe #Insomnia #Upallnight #SkinCancer #Endometriosis #COVID19 #longcovid #loveyourself #Bekind #Selfcare #Catheter #AloneTogether #Parenting #GeneralParenting

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    Are Our Kids Experiencing Post COVID Long Anxiety?

    Part 1 of 3 Here we are, almost 3 years post the COVID-19 virus pandemic that shut down our world instantly and has kept us in a state of uncertainty about many of the parts of life that we took for granted. We lost our freedom to leave our homes, interact with others and move around our community and environment without worrying about catching a virus that had the potential to be deadly. We all experienced a large scale and collective level of feeling nervous, worried, and scared about the present, the future, our health, and the health of others. We also worried about the availability of basics such as food and toilet paper.

    Let’s start with the definition of a pandemic. The World Health Organization (WHO) definition is “a worldwide spread of a disease” with the COVID-19 pandemic being our 21st pandemic (Pitlik, 2020). Due to the speed of the spread of the virus, it was believed that the way to contain and confine was to shut down and create isolation. Humans are social creatures and in need of interaction with others on a consistent basis. The rise of a “virtual” world allowed for many to keep their jobs and for education to seemingly continue. However, the short-term and long-term effects of isolation have created havoc on our mental health.

    During this time, anxiety set in for many. Dictionary.com defines anxiety as the following: “an abnormal and overwhelming sense of apprehension and fear marked by physical signs (such as tension, sweating and increased pulse rate), by doubt concerning the reality and nature of the threat, and by self-doubt of one’s capacity to cope with it.” It is also defined as an “apprehensive uneasiness or nervousness usually over an impending or anticipated ill.” Anxiety is at an all-time high leaving mental health providers with waitlists.

    How is Anxiety Manifesting Itself Presently?

    Avoidance

    Many of our children, teens, and young adults are still avoiding school, social situations, or participating as members of a team for a sport or activity. What can be heartbreaking for parents is that our children may have actively participated in these arenas pre-pandemic and did not know how to “re-enter” so many didn’t. They once had interests and now they seem to have few. Many of our kids have found a strong interest in video games because they don’t require face-to-face interaction and there is escape and submersion in a virtual and highly engaging electronic world. I have heard way too often from parents in my practice that their child or teen has very few “real” friends and friends from the video game domain; however, these friends don’t live locally making their interactions exist only in the virtual world.

    Many of our kids found interest in more sedentary activities that have had the negative consequence of weight gain. Dr. Johnson, of the Johnson Center for Health, indicated that the quarantine change in lifestyle created weight gain; however, the long-term effect of the virus may have resulted in physiologically-based excessive hunger and increased appetite. This may have also created new, unhealthy habits where our kids ate due to boredom rather than due to hunger. In the long run, the change in eating habits has created a change in appearance and ease of movement that has further created avoidance for our children and teens to participate in school, socialization, sports, and activities.

    For many of our teens and young adults, their friendships changed over the pandemic as there were varying levels of comfort in attending school or socializing which created a change in the social groups and friendships. Thus, our teens have had to create new friendships; however, the problem came to be when their peer group was small to begin with, and there weren’t other children with whom to create new friendships.

    Hanging in High Mode

    Many anxious people start their day with a high residual level of anxiety that runs in the background. As the day goes on, that level of anxiety continues to peak and wane as different situations are encountered that result in a feeling of “I can’t handle this,” or “This isn’t safe.” For a student in school, thoughts such as the following can heighten anxiety over the course of the day:

    • I can’t solve these math problems.

    • Everyone must think I’m so stupid for that answer I just gave.

    • I can’t read this.

    • I don’t know the answer to this test question.

    • This is so much work – I can’t finish it.

    • I should have done better on this quiz.

    • I hope the teacher doesn’t call on me.

    • She thinks my hair looks stupid.

    And even when our children and teens have a moment or two where things in life are cruising along smoothly, they often sit with a high level of anxiety for fear of what’s to come. Many fear that if they let their guard down, they will be blind

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    Are Our Kids Experiencing Post COVID Long Anxiety?

    Part 2 of 3 sided by the next “disaster.” I’ve heard this phrase too often, “I’m waiting for the other shoe to drop” and “I need to be ready for whatever may come my way.” Anxiety can lead to anticipation of the next “bad” thing that may happen and having a moment of respite is often not enjoyed.

    Hold this mantra instead: the other shoe will drop and holding that high level of anticipatory anxiety, it won’t lessen the surprise or the hurt. Whatever it is, you will deal with it at the moment.

    Unreasonable High Self Standards

    Many children, teens, and adults often hold themselves to high self-standards at a very young age and can be intolerant of making mistakes. That may look like a meltdown when a child colors outside of the line or doesn’t know the answer to a math problem. Anxiety often comes with the standard of perfection or nothing at all, with little in between. It’s either good or bad, pass or fail. Errors and mistakes or anything lower than a high set standard is equated with shame, guilt, or feeling incompetent or unintelligent. Not achieving 100% or being 100% accurate holds the fear of letting others down and not being “perfect.”

    With education managing the pandemic as best as it could, our kids lost time and skills. Many children’s learning disabilities went unnoticed and undiagnosed as teachers could not see the student’s work directly. In my practice, I have been evaluating and diagnosing children with learning disabilities and other disabilities that likely would have been diagnosed two to three years ago. At nobody’s or no institution’s fault, our children are missing academic skills for their present age and grade level, thus certain academic classes are difficult. However, our kids aren’t necessarily aware of this reason for their struggle in reading, writing or math, and instead, are anxious about going to school and blame themselves for experiencing this struggle. I hear again and again, “I SHOULD be able to do this work, but I can’t so I’m stupid.”

    Now What?

    Relate, Engage and Move

    Our children are emotionally starved and are trying to make up for the lost time. Their self-esteem has suffered. As parents, create family time and time with friends and extended family. Many of us as parents used to have an active social calendar and the onset of the pandemic decreased that zest to reach out and set the dates on the calendar. For younger children, create playdates at least one time per week. If during the week is difficult, try to set one playdate per weekend at a minimum. If possible, create plans to do social things with other families and their children to create those bonds and memories that our children can build on. Although our children say they have friends in school, the amount of time spent socializing is minimum and friendships will be formed and strengthened outside of school, for the most part.

    Just yesterday, a 9-year-old little girl said to me, “You know, since COVID, I don’t play soccer anymore. I used to but now I don’t.” I asked her why she doesn’t play soccer anymore and she said, “I just got used to not playing soccer.” This one short sentence summed up for me how our children lost their interests during and after shut down and are struggling to return to the sports and activities they enjoyed or are struggling to find new ones.

    Parents, talk to your child about finding an activity or sport that they think they may enjoy. Find local classes or teams and join for a trial class or session. Part of the hesitation is not knowing how to be a part of a team anymore perhaps because it has become a distant memory. There may be hesitation in holding accountability as a team or group member. If your child struggles to be on a competitive team, find an activity or sport where they are competing against themselves such as track.

    Our bodies are not meant to be this sedentary and our children sat in front of a computer instead of walking through the hallways, participating in their physical education class, or playing on the playground. The natural inclination to move may have been quieted and we all need to awaken that instinct once again. Encourage your kids (of any age) to go outside (even if it’s cold) and take a walk by themselves, with a friend, or walk the dog. Take a bike ride, ride a scooter, play on the playground, go for a hike, find indoor swimming (during the winter), join a gym, or create a home gym – anything that keeps the body moving and the endorphins being pumped.

    Engage Your Child’s Teachers

    If you notice that your child is struggling in any one or more subjects, reach out to your child’s teachers and ask for a meeting with one teacher or their entire team of teachers. Ask them if they are noticing what you may be noticing in terms of struggle with anxiety, reading, writing or math. Ask the

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    Are Our Kids Experiencing Post COVID Long Anxiety?

    Part 3 of 3 questions:

    • Is my child finishing assignments in class?

    • How well is my child able to express herself in writing?

    • Do you notice significant spelling, grammatical or punctuation struggles?

    • Is my child able to understand what he has read to himself?

    • Is my child able to answer questions verbally in class?

    • Is my child a multi-sensory learner or a child who learns best through hands-on, demonstration or doing?

    • How well is my child able to make inferences and make connections between concepts?

    If there is suspicion of a learning disability, reach out to the Child Study Team or seek a private psycho-educational evaluation. If you don’t suspect a learning disability, perhaps your child needs a tutor to build the more foundational skills in math, reading, or writing. There are often students at the high school level who are available as peer tutors or are seeking service hours.

    Just as there is documentation about long-COVID, which is a physiological manifestation of the effects of the virus, we may be facing the long-term emotional and social impact of the pandemic on our children. Ask questions and seek support and resources for you and your child.

    Pitlik S.D. COVID-19 compared to other pandemic diseases. Rambam Maimonides Med J. 2020;11(3)

    Dictionary.com, Definition of Anxiety: https://www.merriam-webster.com/dictionary/anxiety

    Johnson, Barbara. Why You Gained Weight After COVID-19, https://www.drbarbarajohnson.com/blog/why-you-gained-weight-after-covid-19

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    First of all I want to thank you for this site. I am very new to all this

    but I am desperate to try anything right now. I should introduce myself. My name is Brenda I am

    about to be 66 years young. I have suffered many deep looses these past few years and have been

    struggling to just make it through the day.

    I got divorced in 2010 and moved back to my childhood home to take care of my elderly parents.

    I meet an old classmate and here we are 13 years later. He is caring and compassionate.

    His mom lived with us and I took care of her here in our home for 4 years till she passed 7 years ago.

    April will be 5 years since my mom passed. She was full on care(dementia) and I was her and Dads

    caretaker. Then lost dad 3 years later due to a terrible accident that should not have happened to him.

    That pretty much threw me under the bus. I lost all purpose and self worth. I am also helping to raise 3 of

    my grand sons along with their single moms. I have them every other weekend and every Friday. I have

    had Covid twice. the second time almost did me in. I am left short of breath having to use an inhaler

    when needed and no energy or self esteem.

    Just when I thought I was getting better, my first borne daughter was killed last year in a motorcycle accident

    on the way to spend a couple of weeks with their grandbabies. That was the last straw for me.

    All that said I have now put on almost 55 pounds and just can't seem to have any luck getting rid of it.

    I stay sad and depressed all the time. Friends don't call or check up on me anymore. Jack got me in to see

    a grief counselor but didn't help. Just cost more money. I am hoping that this support group can help me. I'm not sure I can do this on my own. Thanks for listening (reading). Bren

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    2023

    Though I have everything I need, 2023 has been a challenge this year. I got sick right after the new year for two weeks with a virus-not COVID but sicker than when I had COVID. Then just as I got better, I had a serious mental health episode. That lasted another three or four weeks until my meds were adjusted. I was being triggered by interactions with my daughter who is struggling themselves. We had to create new boundaries with each other because we had developed some maladaptive behaviors, and things I was doing to be helpful wasn't helpful. Then as I was feeling better, my psychologist of some 20-25 years was diagnosed with cancer. He is responding to treatment. I am feeling better and working on taking things one day at a time. I actually have a lot to be grateful for, but my struggles remind me that I have CPTSD. Still trying to be self-compassionate and just accept that I am part of the common humanity worthy of compassion and kindness.

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