Peripheral Neuropathy

I can get pretty bad social anxiety these days, and I always fear people will say “What have you been up to…?” I know they would mean well, but the honest answer would be that I've been busy going to doctors, PT & therapy appointments..and practicing self care… treating pain in four parts of my body, off & on for hours each day. But I really don't want our conversation to focus on discussing this…as I often feel a need to explain further, answer the inevitable questions and hear their concern, and often sympathy I’m definitely not looking for!

Even if people say positive things like “You look great!” I think… if they only knew how I feel INSIDE…(I have been dealing with numerous Invisible Illnesses)

Can you relate to these?

What would you like people to stop asking? What have people said that you felt was callous, unsympathetic or uncaring? What words have been the most hurtful?

When you are struggling, what can people say that would help the most? How can they let you know they’ve got your back? What if you could have someone say (or not say) anything you want to make you feel better…What would you want to hear?

Please share your responses to the question(s) that speak to you the most ….your experiences, and what you would (and wouldn't!) like to hear. I find that in hearing other members' responses to them they often could basically be telling my story and we are on similar journeys. I have found this opportunity to empathize with each other here helps me feel less alone!

——————————————————————————-

👍We just went soaring past 2,500 members!👍 It seems that I just posted about 2,222 so recently. I am humbled and grateful that you all have joined me here and are sharing this journey connecting with each other! It’s become more than I even imagined when I started this group a few years ago…let’s keep asking for support, offering it, and empathizing & being there for each other! 🤗🫶🩷🤝👏🤝🙌🤝🩷🫶🤗

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #mighty #conqueryourmind

Just all so peaceful! #ChronicFatigue #ChronicPain #Fibromyalgia #Migraine #Depression #Anxiety #Seizures #PeripheralNeuropathy

Recently I've had a change of perspective about all my meds, doctors, specialists, hospitals, psychiatrist, therapist, physical therapists, pain clinics, caseworkers, and the many types of treatments I get. I have come to be thankful that I have them all and no longer resent them, no longer resent how physically and emotionally draining they can be, no longer resent the days I have lost when I could be working…or playing! I stopped venting and complaining about them in the bulk of my conversations, and making them the focus of the (often limited) emotional energy I do have left many days.

It took awhile and some really tough and scary times…surviving two pandemics: being HIV+ in the 80’s, and many serious complications from it; and then decades later I got Covid that had me taken by ambulance to the ER with over a dozen symptoms, and having to learn how to walk again in rehab; heart surgery; multiple concussions; being in a coma for 4 hours after and accident; mental health hospitalizations…including the arrests I had during two manic episodes; and struggling with addiction. It took really stepping back away from it all and then suddenly I came to find a new perspective, came to the realization of how blessed, loved…and yes, lucky I am. I now choose to see all I deal with currently as tools, resources, and opportunities that keep me alive, help me heal, stay balanced, and I can now see how they are leading me to good health and having the opportunity to thrive.

Yes, I do have well over three dozen doctors, departments, and health care providers in my phone, and probably have seen or worked with over 20 this year, averaging 4-6 health appointments a week for most of the last year. And yes, I take 16 medications, and right now I have a few challenges that have created limitations every day, needing the assistance of mobility devices, needing rides most places and when I drive now using handicapped parking spaces. I stopped feeling sorry for myself and playing the victim and instead choose to smile and laugh during health appointments, joking about the crazy, big, obnoxious migraine glasses I wear everywhere and sharing how I can't wait to run a marathon with others who I meet that are also struggling with physical health limitations. But am I joking? Do I really see myself running, rock climbing, kayaking, going camping and getting back on my favorite hikes again? I choose to hold on to that hope and believe I can overcome the obstacles in my path.

I am realistic though. I also accept that this might be unlikely, and that I will have many of my current health challenges the rest of my life. Yet I give thanks every night for another day, the blessings I do have in my life, the relatively good health I do have in spite of it all. I choose to make sure to observe those around me at the hospital, when I go for (only) outpatient appointments, see how some are in worse shape than I’m in, hear the helicopters land at the hospital, and see the ambulances come to the ER, knowing how scary that can be! I observe other people at Physical Therapy with their head in a cage, or without a limb, I walk past the mental health ward that was my home (twice), am humbled when I read many posts of what others go through here in MHC and remind myself it COULD ALWAYS BE WORSE. With this new perspective, comes gratitude and appreciation…and I choose to smile.

Now to be honest this is a work in progress, I still can wake in the morning and feel sorry for myself after I get out of bed with four body parts hurting before my first step. I can get depressed due to having so many med changes recently. I have even called Mom in total fear before I went for a biopsy, while waiting for news from an ultrasound of something else, and having just found out a procedure I had recently might need to be repeated… and all of a sudden I realized how overwhelmed and scared I was, broke down and cried. Mom “caught me” as she has so often and uplifted & encouraged me. Then a funny thing happened later...I broke out laughing at the magnitude of it all, then walked out of the doctors with my cane and funky glasses and remembered it HAD been worse…but I’m still here!

————————————————

How do you feel when you see your pill bottles? Take your meds every day? Go to regular doctors appointments? I invite you to shift your perspective too… if you haven't already…because even if nothing changes with your health challenges, how you feel about them can make all the difference!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #MightyMinute #MightyQuestions #conqueryourmind #RareDisease #BrainInjury

It is so exciting to see all the new members joining the group and so many of you introducing yourself and sharing about your journeys. I wish I could be more active & better support you all right now, however I have had to really step back & focus on self care. Big props and thanks to our new co-leader Wendy Love for jumping in to acknowledge and support you all with empathy, care and sharing her great positive energy!

Dealing with layers of health challenges right now can be overwhelming for me sometimes. Some are relatively serious, some have me scared while waiting w/ lots of “not knowing!” I have had very regular health appointments (4-6/wk avg) since November, 1 minor surgery, am getting a biopsy this week, have had 2 ultrasounds, and MRI’s of my neck, shoulder & back which were injured from a bad fall when I also had my second concussion in less than a year . So I’ve been in PT 2x/week since last year then two months ago I was diagnosed w/ a rotator cuff injury🙁

I had debilitating migraines back in 2020 from Long Covid that were finally getting better from working w/ my Neurologist… trying monthly shots, infusions & Botox, finding the right meds - one daily & two as needed at onset, using a special tens unit, and an ice cap, taking OTC painkillers, nutritional supplements, etc. Then after the 1st concussion I went right back to 14-16 migraine days a month🙁

Due to my lack of appetite & insomnia from the concussions, plus the migraines, my doctors made major med changes for 8 months. The challenge was that most were psych meds, leaving me just hanging on emotionally through severe ups & downs as I stopped 2 meds, added 1 & changed the dosages of 3 others! After all of this I have just recently had the migraines decrease in frequency and intensity👍

From the concussions I have also dealt w/ brain fog, and memory & concentration issues that made writing so frustrating, which have also been better recently.

I think it really helps me that from a young age I watched my Dad model how to deal with life threatening health challenges w/ determination, dignity, unwavering positive energy, humor, and being a warrior & survivor who never gave up hope! Then I learned how to survive through decades of health challenges myself… inspired by my Dad’s example. I was diagnosed w/ Bipolar Disorder (1982); I have struggled parts of my life with addiction (almost 12 years sober); along those paths I contracted HIV almost 40 years ago then I was very blessed to survive the 80’s when AIDS was considered a death sentence. With my weakened immune system I dealt w/ many serious complications like Pneumonia, Shingles, Bronchitis, C-difficile, and Neuropathy that had me bedridden for 9 months & told I may never walk again…which I still deal w/ today on a lesser level and in 2020 I got hit with Covid real bad, so I've survived two pandemics.

Earlier this year my perspective about everything I’m dealing with currently really shifted. I came to the realization that all my health appointments were helping me heal, cope, and I believe that they will help me to return to being active and thriving again. The blessing of being on disability is that it enables me to focus on my health and self care. I have accepted that taking care of my health is a full time job! It can be very Physically & Emotionally draining, yet I remind myself regularly of all the blessings I DO have. I take solace in the fact that it could always be worse. I am very thankful to have a roof over my head, food on the table, and to have a strong support network of friends, family & health providers.

I have learned to accept my limitations, and adapt as I live & evolve in other ways like focusing on writing my memoir & other reflections, starting this MHC group and posting regularly. In the first 18 months I made over 80 posts from June 2021 through 2022! I will repost select ones starting soon.

Sending blessings, virtual hugs and positive vibes your way! Please send some back…

Moshe
@moshe222mhc

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selfcare Selflove #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #RareDisease #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe

I am sorry that I haven’t been very active here at all for a while. I have been dealing with layers of health challenges … much more than even I am used to … with surgery recently, a trip to Urgent Care, a few acute doctors appointments with different types of excruciating pain, serious side effects from two concussions I’ve had in less than a year… like damaging parts of my spine, then rotator cuff injury from overdoing PT, GI problems, and I’ve been holding on tight to keep my mental health balance as my doctor has made major med changes to many of my psych meds trying to help my migraines, lack of appetite and insomnia which have led to periods of deep depression & a short hypomanic period, and nightmares🥲. I have had 4-6+ health appointments a week. It has been very physically and emotionally draining and I have had to step away from the group to focus on self care. I want to give a special thanks to our new co-leader Wendy for doing such a great job keeping things rolling here and supporting you all the way I’d like to have been doing. Things are a little better for me now, so I thought I would offer a little fun for everyone before I resume my usual posts about health challenges…enjoy!

Can you answer all the questions below?

“What is this?” 🎂
“What sport uses this?” 🏀
“What do you do in this?” 🛁
“Where is this🗽?”
“What is this?”🦶
“Where is this in the body?”🦷
“What kind of animal is this?”🏇

OK, that was easy…How many of these can you answer?

“What is the athlete on that animal above called?”
“Do they use hands 🙌 to measure horses?
“What religion is this symbol for?”☦️ “
“What is this?”🫚
“What do you drink from this?”🍶
“What is this?🏏
“What sport is this?”🤽‍♀️
“Where is this?”🗿

For those my age and older:
“What is this used for?”📽️
“What gaming system is this from? 🕹️.
What is the hardest game to play on it?
(This obviously depends who you
ask, but I’ll take any mentioned by the
most gamers)
“What is this and who makes it?”🎙️
“What was the first album released on these?”📀
When was it released?
*This is kind of a trick question!*
“What is a 12” version of this called?”💿
Hint: It came out 4 years before CDs!
What company made the first player
for these?

How many can you answer?
***WITHOUT Googling them!***

Bonus questions: Get To Know Me”

“What song is my very favorite to listen to on these at the gym?”🎧
“What was the name of the hardest climb I ever did?🧗🏻‍♂️
What was it’s rating?
Did I get to the top?”
Hint: It’s in Virginia and the name has an animal in it!
“Have I ever worn a wig, 💄, fake eyelashes, 👗 , and 👠 ?
“Have I ever had black nail polish and worn black mascara?
“Have I ever done this?”🪂?🥋?🏄‍♀️?🚣🏼?🥊?🤿?🎭?🤹?🎯? ⛸️?🛹?🏒?🏉?
Which ones?
Hint: I’ve actually done nine!
Have I ever used a 🪓?🪚? 🪠?🔭?🚬?💉?🔬?🪆?🔑?🛏️?🛒?🚽?🧴?🩹?🪥?
Which ones?
Hint: I’ve used over 10!

****HOW MANY HAVE YOU DONE?
HOW MANY HAVE YOU USED?
WHICH ONES????***

“What would I be sending you on this?”🖨️
Hint: it would really help you with this

——————————————————

Hope this gave you a laugh, challenged you, or at least distracted you from the coverage of the war in Israel/Gaza, politics and natural disasters!

Putting it together sure helped me!

#MentalHealth , #Depression , #Anxiety #ChronicPain , #ChronicIllness , #Disability , #Selfcare , #Selflove , #PTSD , #BipolarDisorder , #COVID19 , #Migraine , #BackPain , #shoulderpain . #PhysicalTherapy , #BrainInjury , #Concussion , #PeripheralNeuropathy , #HIVAIDS , #Addiction , #MightyTogether , #DistractMe , #CheckInWithMe , #IfYouFeelHopeless , #Hope , #InsideTheMighty

I often think about the things doctors say to us, and how different their response would be if they could see our ailments. The caption to this self portrait of Van Gogh, is something a doctor said to me when I was so unwell from medication induced hyperthyroidism that it caused me to develop a near fatal cardiac condition. I was so nauseous, losing weight and struggling to keep any food down, that I begged him to help me even after he gave me this dressing down.

I can’t help but wonder what the doctor would have said if I’d walked into my appointment, with clear indicators of being physically unwell. And I don’t mean things like needing a walking stick or a wheelchair, because those were later used against me as “evidence” to prove that I was using my symptoms to get attention.

Van Gogh cutting parts of his ear off… might raise some mental illness questions to this day. But I think it’s unlikely that any doctor would ignore the state of his ear, tell he’d brought it upon himself, and that he needed to go away and “live with the consequences” of his decision in quite the same way.

#ChronicIllness #Hyperthyroidism #HashimotosThyroiditis #MyCondition #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #EhlersDanlosSyndrome #Endometriosis #Arrhythmia #Dysautonomia #PeripheralNeuropathy #Migraine #PosturalOrthostaticTachycardiaSyndrome