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The Invisible Illness Trap

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

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Gonna Need A Bigger Spork!

True story… when I was fresh home from hospital, unwashed, unable to stand due to being chronically thyrotoxic, wearing PJs and a cancer cap to cover my hair loss, a visitor uttered these words to me like they think it’s some sort of compliment 🤦‍♀️

#MakeMeLaugh #DistractMe #Spoonie #ChronicIllness #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #HashimotosThyroiditis #Hyperthyroidism #GravesDisease

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You'll Never Change What’s Been & Gone

This was one of my favourite old walking spots to go before I went through my hyperthyroidism thyrotoxicity ordeal, that for a while I was uncertain if I’d ever see these things again. For several months, the entirety of my everyday view consisted of tracking the sunlight as it cast patterns across my bedroom walls. Those little rays helped to keep me tethered to the outside world and in my mind, I'd take mental walks to these peaceful places I’ve come to love and enjoy.

Finally, I managed one of these walks again for the first time in almost a year. I did give myself Post Exertional Malaise (PEM), but it felt worth it—knowing I could walk a distance that felt impossible even six months ago. I had moments of crying my heart out, especially with a healthcare system that failed to diagnose me correctly. But in walking this personal Everest, I was awed at how easily things could feel magical again.

As I reclaim small parts of me that I thought were lost, I encourage anyone reading this to take what you need to fuel your inner world so that your smile may shine on. The system might fail us, our bodies might betray us, but if all you can do is track the sunlight as it slides across your bedroom and over the shackles of invisible illness… hold up, hold on, and it’s okay if you feel scared 🌿

#ChronicFatigue #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #Fibromyalgia #MyCondition #Hyperthyroidism #HypothyroidismUnderactiveThyroidDisease #Spoonie

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On Wednesdays I Go Diving 💁‍♀️

Arrived early for my hyperbaric oxygen therapy today and snapped a quick selfie. I thought it would be a good opportunity to post about what it’s like, for anyone who is interested in giving it a go.

The first thing worth noting, is that Chronic Fatigue is categorised as a neurological disorder by The World Health Organisation. I don’t know if this applies to all countries, but under U.K. legislation and prescribed NICE guidelines doctors have to follow, healthcare providers are required by law to recognise it as such. In the U.K., there are around 50 Multiple Sclerosis Therapy Centres and because CFSME is classified as a neurological disorder, they are usually happy to treat people who have a confirmed diagnosis.

Hyperbaric Oxygen Therapy (HBOT) involves breathing pure oxygen under pressure in a purpose built chamber, usually for an hour. Most people do a weekly session, but for some conditions like cancer where HBOT is proven to make chemotherapy more effective, 3-5 sessions per week may be recommended. This pure supply of oxygen is delivered *above* normal atmospheric pressure, so that the oxygen is delivered is in excess of what you would normally breathe in everyday.

Under normal circumstances oxygen is transported around the body by red blood cells. But with HBOT, the pressure increases the oxygen carrying capacity of the blood stream which induces oxygen levels to increase in ALL of the body's fluids, including blood plasma and lymph fluid.

The benefit of this increased level of oxygen is that the oxygen can more effectively reach damaged tissue and areas where circulation is poor or sluggish, as is the case for anyone suffering from long term chronic illness who is not able to take regular exercise. Another benefit is that it enhances the ability of white blood cells to kill infections, and oxygen is both antibiotic and antiviral. HBOT also helps to reduce swelling and inflammation. Delivery of extra oxygen encourages the rapid growth of new blood vessels into the affected areas which are then available to stimulate healing and repair.

This makes oxygen like little cheerleaders for your body 😍

Recent studies suggest that increased oxygen levels can help release stem cells from bone marrow. These stem cells have the potential to transform into any cell of the body and so there is the possibility that damaged tissues can be renewed, and I assume this is probably one of its many benefits for Mutiple Sclerosis sufferers. Depending upon the pressure level or “diving depth” as it’s commonly referred to—the body is provided with between a 10-20 fold increase in normal oxygen delivery, making it a painless and non invasive treatment.

In terms of what to expect, you will likely need to have your doctor or GP, endorse your condition and give their blessing for you to do HBOT. You may asked to visit the centre in advance of doing any sessions so they can show you how it all works, but my husband was able to do this on my behalf.

The “depths” of pressure can vary between 16ft, 24ft, and 33ft. You start off at the lowest and the instructor will let you know when you can increase to a higher pressure—often after about five dives. The chamber itself has space for around 6 chairs. At my centre they are like padded office chairs, so you need to be able to sit upright for roughly an hour and a half, but they do also accommodate wheelchairs.

You get given a mask and you attach the nozzles on each side which you can just see in my picture. One is for O2 in, and the other for breathing CO2 out. You have to create a seal on your face so there are adjustable straps to help you achieve this. I have learned that taking the mask off, often upsets the seal so it’s best try keep you mask on. The mask may leave your face with some pressure marks but these fade within 10-20 minutes after your session.

At the start, the chamber gets pressurised for about 15 minutes. Your ears feel like you’re on an airplane and you may need to yawn a few times to clear them. In my first 10 sessions or so, I would get really hot in the first half hour. Some people bring a small towel with them, if they are excessive sweaters but I have since stopped experiencing this side effect.

Putting the chamber under pressure is a loud affair and feels very similar to taking off in an airplane. The noise stops after the desired pressure has been reached, and then your hour begins...

I like to take a book to read, but in the beginning I just focussed on my breathing. If you are familiar with yoga and meditation breathing exercises, these breathing techniques can help you to maximise the benefits of breathing in concentrated oxygen. My local centre has a camera and a PA system fitted in each chamber, so the instructor can monitor and communicate with you. So if at any point you are in distress or need medical attention, you can wave and or shout to get their attention and they will depressurise the chamber for you.

After the hour is up, it takes another 15 minutes to release the pressure. Sometimes it can get quite cold in the cabin and occasionally a bit fog like—and then you’re done!

In terms of the benefits, it has really helped my energy levels. In my first few dives, I wasn’t capable of putting on makeup or fixing my hair which I am able to do again so that at least once a week I get to do some mild socialising. There is however the potential to induce a herxheimer / healing crisis. I found this out when I tried to go to 33ft—the detox and die off effect became too much, so I have dropped back down to 24ft for the time being.

For those who know about my hyperthyroidism hair loss experience; the combination of DMSO and oxygen has helped to stop any further hair loss, and is slowly helping to regrow my once thick locks (my eyebrows and eyelashes are thankfully back to normal from the DMSO!) It is also really helping me to tackle my airway infection from yeast and mould/mold mycotoxins, so that I no longer have the constant stuffy feeling in my nose that I’ve had for the past 20 years.

The wonders of DMSO are too numerous to detail here—deserving of its own post. But I hope that this post helps anyone who has been thinking of trying Oxygen Therapy, a better idea of what to expect and perhaps give you the courage to give it a go.

I wish I had done it sooner rather later, and I’m very happy to answer any questions anyone may have 🤗

#ChronicFatigue #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #Fibromyalgia #MyCondition #HypothyroidismUnderactiveThyroidDisease #Hyperthyroidism #MultipleSclerosis #Cancer #LymeDisease

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I Want An Illness That Is Understood

I don’t know about you, but I really want an illness that is understood,
I want a magic pill, a few months of treatment—then gone for good.
I’m tired of being judged by people who have recovered from cancer,
While I try to struggle on with my shattered life with no answer.

I don’t know about you, but I’m tired of all the unsolicited advice,
A little sympathy and some compassion would be very nice.
I’m tired of the ‘me too’, ‘have you tried’, and ‘my friend had that’ banter,
It leaves me feeling cold, as if I have been feasted on by a vampire.

I don’t know about you, but I’m tired of living in in a world of produce,
Where my worth as a person is measured by my physical use.
For we all have our battles, and I yearn for a world that truly sees,
Not just the sickness, but the strength that lies beneath my knees.

I don’t know about you, but I seek solace in whispered winds,
In the soft murmur of trees and the songs that nature brings.
For amidst the incomprehension, the world still holds some beauty,
There’s peace in the silent understanding, these simple acts of duty.

Yet, my pain is valid, as is the hope that tomorrow might be bright,
That someday, the world will recognise my silent plight.
But until that day comes, in this mire I will continue to stand,
Drawing strength from within; comfort from holding my own hand.

#MightyPoets #MyCondition #ChronicIllness #ChronicFatigue #ChronicPain #MyalgicEncephalomyelitis #HypothyroidismUnderactiveThyroidDisease #Hyperthyroidism #HashimotosThyroiditis #Fibromyalgia #DistractMe #MightyTogether

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Women In Chains

In the intimate relationship between patient and doctor, I believe there should be trust, compassion, and mutual respect. However, from my experience of worsening health, I’ve come to observe that there are times when this dynamic skews dramatically, with some medical professionals assuming an almost divine stature, casting patients, particularly women—or perhaps I should say us Jezebels—into the role of sinners.

This sentiment echoes in Hilary Mantel's poignant words in her memoir, "Giving Up The Ghost":

“I think, in retrospect, that it would have been better if I had denied that I had pains in my legs, if I had taken it all back, or brightly said that I was well now. But because I didn’t, the whole business began to spiral out of control. I still believed that honesty was the best policy; but the brute fact was, I was an invalid now, and I wasn’t entitled to a policy, not a policy of my own. I feared that if I didn’t tell the strict truth, my integrity would be eroded; I would have nothing then, no place to stand. The more I said that I had a physical illness, the more they said I had a mental illness. The more I questioned the nature, the reality of the mental illness, the more I was found to be in denial, deluded. I was confused; when I spoke of my confusion, my speech turned into a symptom. No one ventured a diagnosis: not out loud. It was in the nature of educated young women, it was believed, to be hysterical, neurotic, difficult, and out of control, and the object was to get them back under control, not by helping them examine their lives, or fix their practical problems—in my case, silverfish, sulking family, poverty, cold—but by giving them drugs which would make them indifferent to their mental pain—and in my case, indifferent to physical pain too.”

I find this passage both uplifting in terms of having my own experience validated, but equally concerning by how little appears to have changed. Too often, when the mysteries of the body elude quick answers, doctors continue to turn to the age old stereotype of women as "hysterical" or "neurotic". When doctors don't know the cause of physical pain, it's easier, especially for women, to be deemed mentally ill. A stamp of psychological instability becomes a convenient label when our physical ailments don't fit into neatly understood categories.

This, tragically, transforms a medical assessment into a judgment of character.

When I was hospitalised, my physical ailment was mistaken for a mental one. Despite a mere five minute consultation with a private endocrinologist pinpointing the actual issue, the hospital's assessment over five days went amiss. Conversations with other women in my ward revealed a disturbing pattern of this gender bias in healthcare. I have not heard of many—or indeed any—men who have so quickly been labeled as hypochondriacs, or mentally weak due to supposed past trauma. It seems to me that society heralds men as being made stronger by past trauma, while women, conversely, are seen as weakened by it.

While doctors have a duty to uphold dignity, I was shocked at how ruthlessly they are willing to strip it from you. By labeling us without conducting a valid assessment, they diminish us, and simultaneously amplify their own status. It's a transformation that can verge on the sacred… with the doctor assuming a near god like role. The patient, especially a woman who advocates for herself, becomes the wayward sinner, chastised and preached to.

The "cure" becomes less about physical healing, and more about submission and penance.

Hilary Mantel’s experience of being misdiagnosed, leading to detrimental treatments, underscores the peril of this dynamic. She wrote of her struggles with truth and integrity, of having her genuine physical complaints twisted into symptoms of a deluded mind. Mantel's words are a stark reminder that the "hysterical woman" trope can cause irreversible harm.

And the consequence of doctors being so quick to label women as “hysterical” as I see it, is that we become damned if we seek medical help, and damned if we do not.

#Endometriosis #MyCondition #Hyperthyroidism #HypothyroidismUnderactiveThyroidDisease #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia

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Distract Me?

So much on the go at the moment that although it’s only Tuesday, I feel like it should be Thursday already! Part of that is that I had to a physical exam at the local MS Centre yesterday before I’m allowed to do any exercise, and now that I’m at 33ft pressure in the hyperbaric chamber, I’m starting to experience the unpleasant but necessary healing crisis.

I’ve written about my hyperthyroidism hair loss journey before, and one of the things that came with it was some sore spots on my scalp. One of which has become darker and more painful, so I’ve just fired off some photos to the dermatologist for her thoughts.

I know we often post things to distract each other, but today it’s me who could use the distracting!

So, I thought I’d subject myself to your mercy… ask me questions , tell me what you’d like me to write about, request a poem or a meme, I’ll do anything I’m capable of for your entertainment, and my own distraction 🤓

#DistractMe #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #PTSD #AlopeciaAreata #HypothyroidismUnderactiveThyroidDisease #Hyperthyroidism

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I'm new here!

Hi, my name is Chelly72. I'm here because
I am a survivor of child molestation by a close member of my family from the age of 6 to 12 years of age. Little did I know that person had an STD which at six years of age I knew nothing about and had no idea that I had contracted Chlamydia. For 4 years I was oblivious and thought nothing of why my private parts hurt, I was 10 years old and just wanted to play outside with my Hot Wheels until this person insisted I take some pills because I had an infection in my body. It wasn't til I was 29 that I fully understood the damage done to my fallopian tubes, they were scared so badly that I ended up in the ICU bleeding to death from an Atopic Pregnancy. I was 8 weeks pregnant, the fetus had gotten lodged in my left fallopian tube, unable to make it to my uterus it started to grow right where it was at eventually outgrew my fallopian tube causing it to burst. I felt so helpless laying there in my hospital room, that helpless turned into failure and failure turned into I just wanted to die specially after the doctor had told me that my chances of having children naturally were slim to nothing. I never did end up having children and now at the age of 50 it still pains me to see young mothers with their bundles of joy. This was to be the start of my endeavors of Grief, Depression, Domestic Violence and Drug abuse.

#MightyTogether #Anxiety #PTSD #Grief #graves 'Disease#Hyperthyroidism

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Is “The Drowsy Warrior” a Good Superhero Name?

First, I have to point out the upsetting thing about this picture. It’s from a few years ago when I had all my hair. Second point; ageism. I just went to a dermatologist to discuss my hair loss, and even though when she asked me to estimate how much of my hair I’ve lost (about 40%), she told me that I don’t like I’ve lost that much hair to her. Hair loss is a matter of perspective though. She was I assume in her late 60s and had what looked like naturally fine hair. I’ve lost so much of my own hair, that I can no longer put it up into a ponytail without my hairband falling out. Whether my hair loss is overtly obvious to others or not is immaterial—it’s very obvious to me, the person suffering from painful patches on my scalp that itch and burn, with no confirmed signs of hair regrowth since I fell gravely ill last summer.

She did offer some advice which I’ve started to follow, and suggested that if I keep at it my hair should grow back within 2 years which is a positive ✔️

I guess I should feel happier, but the hair loss isn’t the only symptom I’ve suffered since I was hospitalised and misdiagnosed as being hysterical, rather than them correctly identifying that I was hyperthyroid, which led to my hair to continue falling out far longer than was necessary. I was also so thyroid toxic that I needed to invest in a wheelchair, but this was again, dismissed as me “wanting attention.” My ongoing experience is that unless there’s an easy fix to your problems, doctors for the most part, are not interested in helping. They want easy fix patients, not the complex cases that tax their time and energy. Even a sympathetic doctor told me recently about my painful skin burning sensations “that’s something I’ve never come across in my years of practice.”

Case dismissed, nothing more to see here, kindly move along.

Medical negligence for people with chronic illnesses, disabilities, and for the elderly, is I think one of the great disasters of our time. We are routinely robbed of our dignity, and no one wants to hear about our plight. Not when there are far more pressing matters to give their attention to, like someone’s mistaken use of the wrong pronoun, or watching TikTok videos of people committing crimes and posting them online for the world to consume as internet fodder.

I cannot think of a reasonable way to wrap up this post, other than to ask that you send some positive healing hair follicles vibes my way, and to send virtual spoons to all you other Drowsy Warriors reading this 🩶

#ChronicFatigue #MyalgicEncephalomyelitis #HairLoss #Hyperthyroidism #MyCondition #ChronicIllness

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Cute But Dangerous

Went to the dermatologist today. Took the dogs for a stroll after, so they could frolick and swim and I could gather some more wild garlic, which is soon going to be a pesto 🌿

Saw these little shrooms but a quick app check revealed they are neither edible, fun guys, or even safe to touch! First rule of foraging I guess is to always check before trying 🍄

#HairLoss #Hyperthyroidism #telogeneffluvium #Psoriasis #PsoriaticArthritis #MyCondition #DistractMe

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