Thoughts

Though my health has incrementally improvements these past few months, I still remain for the better of each day, bedbound.

This week has been my first lo-fi birthday since my health worsened where “living large” consisted of a walk with the dogs, followed by microwave mug cake and a movie with my better half. It was everything I could have wanted from the day, and I decided to spoil myself today with a posy of daffodils to look at for the hours I’m confined to bed.

I am always strangely fascinated by the odd minutiae we take for granted when we are so occupied with the hastened pace of life that we accept as societal norms. Like that if we aren’t busy, then we seemingly aren’t living our best life all the time, except for ‘self care’ which is often equally demanding of our time and energy.

The influencer crowd have done a great job of appropriating the concept, with many ways to hawk ‘self care’ products to us where they wax lyrical about the benefits of quartz facial rollers and the like—which in my experience, get used (mostly in false hope) for a few months, then it becomes forgotten and relegated to the back of our drawers. But fear not—for there is another influencer waiting in the wings to energetically urge you to overhaul your living space and spend time removing all the items from our homes that no longer spark joy!

If for no other reason; being hospitalised and so poisoned by my thyroid medication I could barely achieve the walks to the loo, makes me happy to have been forcibly removed from the zeitgeist hamster wheel of consumption where you get to spend a lot of time and effort doing things that don’t actually matter to you, and now focusing only on the things that matter most to me from now on.

And today I have discovered a simple joy that escaped my notice throughout all the springs past where I’ve purchased cheerful little daffodils. Today as I sat in my room I have witnessed several snaps, crackles and pops as they began to unravel in the water and bust open their tight little petals like they’re teasing me with their blooming arrival 🥰

I hate many thing about being sick, but finally starting to see life from a renewed perspective and a greater appreciation of the littlest of things, is something that I could never regret 🌼

What things have you begun to notice that escaped your attention before?

#DistractMe #MyCondition #Thoughts #Flowers #justforfun #Fun #ChronicFatigue #bedbound #MyalgicEncephalomyelitis #InvisibleIllness #DisabilityTalk

I’ve been MIA for what feels like months rather than days, but life has really been getting in my way lately. This has me thinking about how in terms of our mental health, intrusive thoughts get a lot of attention—but what of the grist of life that we cannot control just as easily? These are matters in which we can only control how we react to them, but in times of reduced physical capability, they can be quite overwhelming and difficult to deal with… and the world doesn’t make many accommodations for the sick.

In fact, I’ve found it to be quite the opposite. In that most people are more inclined to take advantage of my reduced capacity, than not. Family, friends, and foe alike.

If life is a battlefield; there aren’t many spare horses available to accommodate the wounded in the dailiness of living, so most of my friends and family have simply left me behind to fend for myself. So if nothing else, ableism has taught me that it is wears the same face as ageism, because our society has commodified people to the point that we are valued by how much energy we have to contribute, rather than the wisdom of experience we have to offer. I’ve also encountered a few illness groupies, who appear to delight in what I’ve come to think of as “sickness tourism” or “illness voyeurism.” It’s clear they aren’t so much there for me, so much as they show up for a taste of my drama, before moving on to the next crisis to feast on and nourish their saviour complexes.

And foes—well—being sick has given me a massive new enemy, given my healthcare system is less interested in helping me to get better, and more interested in telling me that I’m not gettting better because I AM the problem.

It also doesn’t help that my father passed away several years ago, and entrusted the care of his estate to a bank who have disregarded many of their fiduciary responsibilities so that after much effort on my part: I discovered that they committed a series of breaches, which I have had to escalate to the appropriate ombudsman. And as the oldest sibling, the fight for justice falls mostly on me. It is also bitter pill, because I’m certain this has contributed much to my poor health, yet I also need the money to spend on private healthcare.

And like most, I have a partner, a house, and pets that need caring for, but I have no support system. My other half and I support each other; but it doesn’t alter the fact that some of these responsibilities would be difficult for any person to juggle. Never mind that I’m also trying to fight for my health, my inheritance, run a business, maintain boundaries with all the narcissists I have had to spend a great deal of time and effort to understand that I naturally attract, maintain my sense of self, and somehow try to emerge from all this whole.

Spoiler: I probably won’t. But I try to remind myself that I would rather come out the other side of the hand I’ve been dealt with a few bruises, than to never have tried at all. Or worse; to have attempted to rely on others to play for me—because that game is a guaranteed losing hand.

#MentalHealth #IntrusiveThoughts #ChasingLife #LifeLessons #TheDisabledLife #NarcissisticPersonalityDisorder #Thoughts #MyCondition #ChronicIllness

Brain fog from new supps recommended by the results of the private lab test recently received has me feeling like I’m in a state of arrested development. I can’t easily get out, and I’ve become a pariah to most who know me. I’ve written about this before… many people don’t know what to say to me, so now they simply say nothing at all.

But that doesn’t make it hurt any less.

Feeling like if I’m not whole and actively participating in life, I am not worthy of their time. It cuts ever so deeper when I realised that when I had nothing left to give, I lost most of my family. Many are apparently “there for me” but in an abstract way only that doesn’t require them to do more than send me texts. I have been relegated to acquaintance status. And I find my health problems are conveniently diminished by the use of reductive phrases like me being “sicky-poo”. One; I haven’t been “sicky-poo” since I was a toddler and two; I know this is a means to downplay the severity of my illness, because you don’t have to show up for someone who you refuse to acknowledge as being chronically ill.

Then there’s the people who treat chronic illness like it’s a competition.

I’m sure you know the type. If you complain about sleep problems, they instantly bemoan their own. If you’ve stubbed your toe; they’ve broken their own. When I was hospitalised with chest pains and high blood pressure, a family member had to change the conversation to them having visiting the hospital for an ingrown fingernail. Apparently routine outpatient treatments are equatable to being admitted to a cardiac assessment ward.

Being chronically ill, brings out the worst in most people.

And to add injury to insult, I find myself having to self treat and order my own lab tests to try and improve my health. Of course, the first thing doctors will say is that I shouldn’t self treat or self diagnose, yet in their unwillingness to help me, what else am I supposed to do? I’ve lost count of the number of times I’ve been declared to be the picture of perfect health based on basic bloods. Yet the advanced lab tests I have done reveal a completely different picture.

Worse, poorly informed doctors can hurt patients with bad advice. Case in point; the private GP who told me that I should treat my heavy metal poisoning with graded exercise therapy (GET). Never mind that it’s been scrapped from the treatment guidelines for people with CFSME, moreover, my body is so depleted of nutrients and my detox pathways so overloaded with oxadative stress, forced exercise would undoubtedly make me so much worse.

And I am no exception to the conditioning that society attachs to looks and our worth.

Which makes my continued hair loss and the burning peripheral neuropathy, yet another assault on my everyday life. It’s hard to feel like you matter when you know you are an afterthought to the people who proclaim to care about you, have doctors invalidate your illness, and feel the eroding effects of your condition on your body. I feel suspended in time, yet time is taking it’s toll on me nonetheless—both physically and mentally.

I’m not entertaining any thoughts of ending it all, but I can’t help but think of what my funeral might look like. A staged event with all these people rushing to say wonderful things about me after I’m gone. Virtue signalling writ large. There may even be some tears. All this from people who can’t be bothered to speak to me while I’m still here.

As always I find that whatever I’m going through, there is someone who has covered similar ground and in this case I find myself thinking of Monty Python’s “Always Look On The Bright Side of Life” from Life Of Brian. Specifically this part…

“Life's a piece of shit, When you look at it, Life's a laugh and death's a joke, it's true, You'll see it's all a show, Keep 'em laughin' as you go, Just remember that the last laugh is on you.”

#MentalHealth #Thoughts #MyCondition #HairLoss #Neuropathy #PeripheralNeuropathy #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #BrainFog

Considered by many to the first ever rock star, allow me to describe some of my healthcare(less) journey, by borrowing a few words from master blues artist Robert Johnston: “I went to the crossroad, Fell down on my knees / Standin’ at the crossroads, tried to flag a ride / Didn’t nobody seem to know, everybody pass me by / Standin’ at the crossroad, rising’ sun goin’ down / I got the crossroad blues this mornin’, Lord / I am sinking’ down.”

After finally getting the results of the much anticipated private test I did, yesterday, it showed multiple issues, many of which were no surprise at all… but highlighted some issues, of which I had no awareness at all. Made worse by the fact that I do not possess the skills for an in depth understanding of the intricacies of hormone and neurotransmitter cascades, enzyme carboxylation and so on. Yet it is apparent this is where at least one major issue rests for me, and it seems from the literature I’ve read thus far, that serotonin syndrome is so little understood, just finding someone who is familiar with it, may be another mountain to summit, just to reach the starting line.

The private endocrinologist I consulted with over 3 months ago, has still not come back to me with the results of the blood tests he ordered, yet the hospital has sent me the bill for said tests. It’s clearly a dead end in terms of the support and interest he has in my case, yet my GP won’t do much of anything until I get his feedback which leaves me in the proverbial catch 22.

I’m sick, I’m always tired, and have been forced to treat myself for going on 5 months now, which the medical establishment has already weaponised against me by declaring my interest in my own health to be clear evidence that I am a hypochondriac seeking attention—to the point of manifesting test results showing conditions I could not have willed my body to produce, even if I wanted it to. And truth be told, I think if I could think my way into an illness, I probably would have focussed on something that would be easily treatable and fit neatly into their “I have hammer, therefore everything is a nail” mentality.

To my further detriment I did not opt to attend medical school armed with the prescience of mind to foretell that I would need this knowledge later, and there’s also the cold harsh truth that if I had boatloads of cash and a posh upper crust accent, doors I don’t even know exist would probably be being flung wide open for me because power respects power.

This in my opinion, is the cruel side of healthcare being both political and transactional: when you are considered wealthy, you get all manner of perks and doors opened to you—often for free. Yet when your means are limited and your need for this kind of assistance is greater; is when when this support would be most beneficial.

Tomorrow is another chance at this thing called life, but for today I’m feeling the Cross Road Blues because like Robert Jonhston; I feel like nobody seems to see me, everyone is passing me by… and the weight of it all has got me sinking down.

#WritingThroughIt #Thoughts #FunctioningDepression #Insomnia #MyCondition #ChronicFatigueSymdrome #Fibromyalgia #FibroFog #BrainFog #HealthCare