Chronic Fatigue

If new research into pain says "exercise more! Keep active! Get up every 30 minutes!" then can someone tell me where I'm supposed to get the energy from to do this? How am I supposed to be motivated to exercise if I feel like all my limbs are being pulled apart & my stomach is on fire?
I got a cold today & things are 100% worse than they were before, & I'm not even sure of the rules these days. Can I rest, or do I have to have a brisk walk round the garden followed by some stretching?
It just seems rules for healthy people are "stop exercising when you feel discomfort & rest when you're ill" don't apply to people with chronic pain. "You're in pain already, so develop an unlimited tolerance to it, suck it up & exercise" feel like the approach.
Maybe I'm wrong, but godamnit I need a rant! 🤬🤬🤬🤬🤬🤬 #Fibromyalgia #ChronicFatigue #ChronicPain #ChronicIllness #JointHypermobilitySyndrome

My name is Mita. I am a 42-year-old multidisciplinary artist and podcast hostess; a mother and a wife. I focus a lot on Pacing and Creative Coping strategies to get through my days with various chronic conditions.

Following a whiplash injury in 2015, is when my chronic pain/illness journey started. I’ve been diagnosed with whiplash, fibromyalgia, orthostatic intolerance/dysautonomia, chronic fatigue syndrome, occipital neuralgia and chronic migraines.

I am in pain every day. Some days my cognitive function is severely hampered due to Brain Fog. And P.E.M (Post-Exertional Malaise) can be a real stick in the wheel.

My baseline, on a good day, is a headache pain level 2-3, occipital neuralgia at a 2 and fibromyalgia pain level 4-5 (on the ‘In Office Doctor’s Pain Scale’) with migraine attacks every few days.

Since developing a chemical sensitivity, it makes the pain hard to control, as I cannot take most medications.

I experience Vertigo, muscle weakness and extreme fatigue on top of all the other crazy symptoms these conditions come with, and I am at a fall/faint risk if I am not careful.

Late fall, winter and early spring are the roughest months to get through, living in the Midwest as I am. But once the weather stabilizes and becomes warmer and if I have been prudent with my energy supply during the winter, then I can find myself living it up a little more during summer which is invigorating for the soul.

So, I am limited. Physically. This is my reality. I only have so much energy to go around and every day I need to pick and choose what I spend it on. I always have to keep in mind that I cannot overdraw my account. I need to balance my ‘checkbook’, if you will, to make sure I do not go down to zero, because I may not have enough to go around for the next day, or even the next couple of weeks if I do. But with Pacing I can lead a somewhat decent life.

ME-pedia describes Pacing as such: “…an activity management strategy to help ME/CFS patients limit the number and severity of relapses while remaining as active as possible…”

(Obviously, I am not perfect at Pacing as I find myself doing too much on occasions, due to getting impatient with my limitations. Overall, I’d say I do pretty well with it though.)

So, what do I choose to spend it on?  Well, some mundane tasks need to be done, like laundry or light cleaning, so I spread it out over a few days. I work within my boundaries which I have somewhat figured out via trial and error. This is part of Pacing. Ups and downs til you figure what You can handle.

I am a very lucky gal to have an extremely supportive husband and three children that help me with some of the heavier chores. The house would be in utter chaos if this was not the case.

When the mundane, pragmatic things have been taken care of, I choose to use my energy on the activities that fill me with contentment, keeps my anxiety levels down and overall contributes to a better state of mind. Whether they are Creative Coping Strategies, like painting, drawing, forest bathing, expressive writing, or just being with my family in the moment, or listening/making music (the latter depends fully on headache pain levels and brain fog but within my capacity, music will always have a part in my life).

I am also half of a duo in a podcast we have named Creative Copes where we talk about these exact things – A labor of love for ourselves and what we hope becomes an aid to others in similar situations. I save some extra energy for research and general podcast prep so I can co-host it, because the idealistic compassionate part of myself wants desperately for other people to feel less alone: a constant state of mind when stuck at home, in a body that does not compute anymore.

This is what I spend my energy on. Things that matter to me; that settle my body and mind and make my heart soar.

I am not all knowing and cannot be worldly with how limited I am: I am clearly not meant to be a main figure in changing the world!

But I can do Small Things in a Great Way, for myself, my family and others, and hopefully someone can feel less alone because of my story and be more inspired to get up each morning and meet the day head on. Love and light ❤️

I can be found on Instagram handle MitaMu.Art and/or Creative.Copes

www.instagram.com/creative.copes

I don't have a PCP now til springtime or at the latest July 27th. I was tired of being treated like dirt. It's kinda far but this place was recommended by someone with Fibro/CFS who gets good treatment there so fingers crossed 🤞if something comes up it's the ER or Urgent Care basically again. Which sucks but if I get better treatment I really do not care.
Depression is honestly kicking my ass along with pain, it sucks. I booted my counselor as well for flat out ignoring my trigger. My Psychiatrists MA today was less then helpful. I just don't feel supported anymore and it sucks. I have my roommate who I adore but she admits she isn't good at the emotional comfort but dear God does she try and I'm so grateful. I just feel like a crappy friend because I don't feel like I do enough. She understands but it's just the brain gremlins.
#MajorDepression #Autism #Anxiety #Loneliness

So you guys I have the FLU, not pnynomia! 😊😊😊 I finally went to the doctor this afternoon, my sister drove me, I have the flu, drink plenty of water and take Echinacea. At least it is not my lungs, am very glad for that, bedrest the next few days for this lady. I have low fever, no aches in my bones, just feeling weak.

It was 3rd December 2021, I was on week off, I was happy and cheerful, was dancing in my room, but who knew that after few minutes my life would be changed and I will have to start living with constant pain. Okay, let's start from the beginning, I am a 22 year old girl , I have l5 S1 herniated disc and nerve compression according to my 4 doctors and 1 physiotherapist it is very minor and I should not be in so much pain but guess what? I am, I am in constant pain from last 15 months, I have constant pain in my lower back, hips, thighs and legs and no matter how hard I try to explain it to my doctors and to people who are close to me, they don't seem to believe it, however, the truth remains the same no matter whether someone believes it or not. Initially, I thought that it is something very minor and will go away on its own after some days but it didn't go away, instead it has made my life worse, I had so many dreams I wanted to study, i wanted to work but I couldn't do anything because of this pain, I was somehow working but I had to leave my job last month because the pain was unbearable. Honestly speaking I feel sad, very sad at times also I try to fight with this illness and my anxiety but sometimes I fail, sometimes, I am not strong not because I cannot be but because I don't want to be, sometimes, I feel like breaking, I feel like crying because, sometimes, I don't want to hold and want to be held!

#TheMightyTakeaway #ChronicFatigue #BackPain #ChronicIllness #InvisibleIllness

I went to the ER last Friday. I fainted twice Thursday night, probably hit my head on the heater and it was also vinyl hardwood. Roommate said the fridge was pulled out, I was trying to get a drink. When I sat up, the trash can was pushed back a couple feet. The ER did a CT scan, it was clean. All tests were. I got Tylenol and an Ativan because I was scared with the CT scan and hospitals are extremely triggering. They did prescribe anything. They did not look at that back of my head even though it hurt like hell. They didn't even check my eyes. The headache only let up yesterday. I know this may be POTS or something. They want me to wear a heart monitor as well.
Monday, the doctors appointment was telehealth and I don't drive and the local disability bus is having more delays and with how sick I've been it's impossible. She refused to listen tho. She refused to listen about what wasn't working. She told me to go back to the ED. I said something similar to this: I seriously was debating ending my life due to pain and the treatment I've been receiving. Got cut off here and was told: are you threatening suicide? I will call the cops.
I said no. I'm safe. I have a lot of things going on. She also didn't mention any of the ED notes or anything I told the nurse, the appointment was about 5min.
My psychiatrists medical assistant was confused as to how that was a threat. I also fired my counselor yesterday due to him on Monday flat out ignoring a trigger then saying he only does 12 sessions but gave me more. Sunday had stuff happen too but I don't want to get into it.
It's been trainwreck after trainwreck going on two weeks now. Mom, dad and brother also have covid. I don't live with them or am near them.
#SuicidalIdeation #SuicidalThoughts #MajorDepression #ChronicAnxiety #CPTSD #Autism #ChronicPain #help #PanicDisorder #MedicalTrauma

So last Thursday I had my last TMS-METHOD session, it's was bittersweet to be honest. On Friday I had planed to do some dusting and other chores, and also relax a little. But oh no; instead I woke up feeling lousy, sure enough I had tempture, was also feeling little bit out of engery. Hoping it would be over in few days, I just took it easy that day. Today I am still sick at home, am begining to think I have you know ill in the lungs. Have had it two times before ( in both cases midly in my left lung), so I know the feeling, so hoping I am wrong. Am going tomorrow afternoon to my clinic between 4 and five, at that time of day you can walk in without an apppoitment and the doctor on call will see you. I am more than a little anoyed; this week I was going to revist a place I haven't been to in several years, know many people who go there regullary. It is a club
where you can go to if you have mental illness, lost your job or physical illness. Was so looking fórnardauða to this visit, but hopefully I can go next week. Thanks for letting me rant here. 🤒🙋‍♀️😊