Chronic Fatigue

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HIV Disability: A New Reality

A diagnosis of HIV can be the beginning of a rollercoaster of health related issues; especially as one ages with HIV. Having lived with this virus for a number of years, one can say that comorbidity and HIV are a single package; one of life expectancy and the quality of life. The deterioration of one’s health can come in various ways, and as does disability.

Disability is a challenge physically, mentally, emotionally, and spiritually. A person is to be independent, self-sufficient and provide for themselves; as well as for others. Therefore, to accept one’s own disability jeopardizes independence, self-sufficiency, and the ability to provide.

Disability tears at the fabric of one’s perceived self-worth and dignity, in light of the possible negative perception of others and society; in the falsehood of becoming nothing more than a burden on others, because care and assistance must be provided for on a regular or daily basis. Yet, everyone who has been blessed with having a life lived will be cared for, treated, and or need assistance to get about and accomplish things in daily life, at some point; a reality each one of us must accept.

My immune system is one of those which are more susceptible to outside elements; and combined with HIV infection and long term immune system response (inflammation) it has made me more susceptible to comorbidity, seen in older senior adults; as a result I have comorbidities. Antiviral therapy is keeping me undetectable with a healthy CD4 count, keeping the virus at bay; but it isn’t preventing the toll living with HIV is taking on my body.

The first signs of typical aging are immobility and frailty. HIV is showing that the signs and impact of aging does not have a number. My number is age 45. Yet, think back to the many people who have died due to the development of AIDS, because there wasn’t antiviral therapy. They did not have the benefit and opportunity to be undetectable, and to age with HIV, regardless of comorbidity.

I go on living regardless of my quality of life, which can definitely be alot worse. The big picture is about living my life to the fullest, regardless of my circumstances and any disability. This is my mind set as I venture forth in my personal circumstances.

My HIV related peripheral neuropathy is not completely reversible nor is it easy to treat. I am receiving treatment, but it has also resulted in chronic pain coupled with chronic fatigue, which varies in the degree of discomfort and debilitating effects on a daily basis; from getting about with relative ease with minimal discomfort and pain, to needing to stay off my feet.

When my chronic pain due to neuropathy is at its worst sitting down and standing, kneeling down, making my way up and down a pair of stairs, and walking in general, is a nearly impossible painful challenge. These days are farther and fewer in between. The most important thing is that I am still mobile.

I was diagnosed with osteoporosis after breaking my wrist in a situation where it normally doesn’t happen, and raised a red flag. This was worrisome and unexpected news, to be at a high risk for bone fractures, and the relative ease it can happen with a single fall or wrong turn of my body with a slip on the rug.

That being said, I am currently receiving treatment for osteoporosis as well. The chronic pain from my neuropathy complicates my treatment plan for osteoporosis; in regards to my exercising to strengthen my muscle and bones.

Therefore, I have taken precautions to prevent any accidents. I make use of a cane and walker if needed (I currently live alone) and have installed railings in my shower and bathroom. I also keep a strict food and drink diet, along with nutritional supplements, medication adherence, and the managing of my level of activity due to my chronic fatigue.

It is not easy living with HIV as you get older, but life is a journey and a challenge; with happiness victorious if you let it.

Written by James Cotromanes


Burnt out and tired, and so far unable to recover

I've been feeling lately like my few commitments are too much. I'm so, so tired, and I feel like I can't ever get enough rest. I have both physical and mental health conditions that occasionally flare up and become disabling... Still, I find myself unsure of what to do next, even knowing the reasons for my exhaustion. I feel guilty that I can't just rise above this.

I'm really feeling quite emotional because I've been debating dropping out of grad school. I never thought I'd even speak those words, but here I am. I'm feeling too exhausted to achieve the goals that once made me so happy and motivated me to push through difficult days. Part of me just wants peace, space to enjoy life, and finally, after so many years, a life without homework or commitments that haunt me after I leave work. But part of me is also so afraid that I'd be giving up on my potential. I imagine myself wondering, years from now, if I made the right choice. I imagine myself telling my future children what I do for a living, and... I feel ashamed of admitting that I just want to step back and recover from this stress that I cannot shed.

Any and all advice is appreciated. Thank you.

#InflammatoryArthritis #Autism #ChronicFatigue #Anxiety

14 reactions 8 comments

Symptom Tracking

I'd really love to know if anyone has a good method for tracking their symptoms. In the past I've used a bullet journal but it gets so overwhelming to keep up with. I'd love an easier system or even an app or something. I want to track for myself to find patterns and hopefully some relief, but also for my doctors as I work towards a diagnosis. Any tips are greatly appreciated. 💜 #Fibromyalgia #Undiagnosed #ChronicPain #ChronicFatigue

12 reactions 6 comments

I'm new here!

Hi, my name is rachel newport. I'm here because I have fibromyalgia, chronic fatigue, & ptsd. I would like to learn from, and also help, others like me.

#MightyTogether #Fibromyalgia #Depression #Fibromyalgia #PTSD #ADHD

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My Not So Mighty Moment

When I was in high school, a middle aged teacher showed up to class with her hand in a cast, courtesy of a wild bowls incident. Being an all-girls school, naturely this was a source of gossip. After some discussion, we crowned it the 'Most Geriatric Injury Ever Conceived by Teenage Minds'.

Fast forward to the present, and here I am, ready to steal her crown!

Enter Taryn, the Yoga Clown 🤡

Last week, while channeling my inner 'Warrior Pose' at my local MS Centre, I felt a small pop in my
chest that definitely wasn't my inner peace bursting forth. By the end of the session, my neck was brewing with what felt like the beginnings of a migraine that could rival a Shakespearean tragedy. So I did the logical things—a hot bath with lots of magnesium, dinner, and an early night with dreams of being a yoga guru.

Clearly, the Universe had other plans...

I woke up feeling like I'd been rear-ended by an invisible truck. It was like the whiplash injury I got in a car accident a few years back, but with a hefty dash of facial acrobatics. Pain in the left side of my neck, ear, sinuses, and teeth—because apparently, you can sprain your face doing beginner yoga.

As I start to feel less like a human pretzel, I can't help but chuckle about the absurdity of it all. So, to anyone needing a laugh: if you ever feel silly about an injury, just remember me – the person who went full Cirque du Soleil with her face in yoga class 🤗

#DistractMe #CheerMeOn #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #Headache #Migraine #Endometriosis #PolycysticOvarySyndrome #MultipleSclerosis #BackPain #Laugh #Meme #BruisedEgo

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Being Invisible

It's an odd mixture: wanting to be seen and heard, but also wanting to just blend in with the crowd.

You see, when you look 'normal,' people don't understand. You get so many questions: Why do you wear a mask? Why do you need to rest? What's that for? Why do you go to the doctor so much? Why do you take so much medicine? The list goes on and on and it feels as though you have to answer all the questions. It’s embarrassing when you don’t want the attention, to be singled out. You just want to look and be ‘normal.’

Then there’s the other questions: Are you really tired? Are you really not feeling well? Do you really need all those doctors? You seem fine; what’s wrong?

What’s wrong? What’s WRONG?! How do I even begin to explain it to you?

See, I’m medically complex. I need about 10 minutes to explain my history to a specialist. To you? Give me at least an hour. I promise you’ll probably check out after the first two minutes though.

See, I look ‘normal.’ You can’t see what’s going on inside of me. You expect me to be normal and it’s easier for you to handle me if I am. So, when you ask and I try to explain, you’ll tune me out because it’s just too much. I know you mean well, but I also know you’d rather not know.

It’s hard to be invisible.

See, I’m so used to being sick that I don’t know what being healthy feels like anymore. And, I’m only 8.

See, I sleep 11-12 hours and still feel tired all day.

See, I have a new infection every month and about 4-6 viruses a month as well. You probably don’t even notice them though.

See, I cough every morning and night. I cry because I’m so exhausted when I get home from school. I choke on my own mucus and cough up big gobs of it. My chest hurts from inflammation. My sinuses are inflamed. My teeth, ears, and head hurt from the pressure. I lose interest in food and often can’t eat because of tooth pain. I’m not gaining weight. My joints are hypermobile so I fatigue quicker than you. I’m so restless in my sleep that I’m never well rested. My legs go numb from sitting in one spot. I’m on an antibiotic that tastes awful for 2 weeks every month. And, I just want to be like you.

So, next time you go to ask, maybe don’t. If I’m brave enough to talk, maybe listen. Because it’s hard to be me.

And if you see me smiling, active, and telling you it’s all okay. It’s okay to believe my mask. But, please remember, you never know the weight that someone else is carrying.

It’s hard to be seen and yet, so hard to be invisible.#ChronicIllness #Rare #immunodeficient #ChronicFatigue #walkamileinmyshoes #invisible

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Duxbury Beach

The sound of the waves crashing, the beach to myself, and the amazing sunshine on my face on this beautiful fall day! #Fibromyalgia #ChronicPain #ChronicFatigue #Migraines #Anxiety #Depression #Seizures

41 reactions 12 comments