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    Walking The Invisible Illness Line

    I’ve been bed-bound for the better part of three months now since I had a cardiac episode due to medication induced hyperthyroidism. I’m grateful I no longer need a wheelchair and can manage a 5 minute walk with the dogs and my husband in the evenings. But for the greater part of the day, I’m still stuck in bed.

    I’ve watched so many documentaries, movies, and TV shows. And as much as I enjoy reading, cognitively; it’s become a challenge to spend the whole day focussing on small type. I find audio books to be more akin to auditory noise rather than being enjoyable, so that rules these out. Which makes the discovery of downloadable learning TV apps something of a revelation.

    I recently downloaded Coursera and I’ve been learning about learning and memory, which is both interesting and useful—in that I have the gene for early onset Alzheimer’s disease. So keeping my brain challenged in doses I can manage, will hopefully help to stimulate my brain to keep creating healthy new neural connections. Next I’ll probably do some courses on mythology but it’s a comfort to know I have a way of keeping myself occupied in a way that is good for my brain health, and my mental health. Because all that free time can make my thoughts spiral at times—which I think is natural, and to be expected.

    We are creatures of habit, yes. But we all also want to feel like we are leading meaningful lives, and I think this is the cruelest part of being chronically ill.

    Whatever you enjoyed before gets taken away. Then come the doubters… the doctors, the comedians, the social commentators and painfully, family members, or so called friends—all eager to stick their claws into you when you are at your most vulnerable. And there’s only so many times you can hear the empty words “get better soon”, or “have you tried yoga or meditation” before it starts to erode away at your soul. The truth is I think there is no way to successfully walk the invisible line of trying to make the best of your lot, and convince people that you are also chronically ill.

    The line itself is so faint, as to be invisible to most.

    Society wants you “whole” or in hospital… there isn’t much room, or understanding, for anything in between. We have to learn to accommodate the grief that comes with being socially maligned, which is something I still struggle with almost every day, alongside having to advocate for myself to get assistance to manage my health. These burdens, social, mental, monetary, access to healthcare, loneliness, and more—are not challenges that any person should have to face alone.

    But if I have learned anything in life, it is that there is always power in knowledge. So while I continue to try and navigate the invisible illness line, I’ll be learning about myths and poetry, and continue to take comfort in other people’s autobiographical tales of misery. Because being chronically ill is a tragedy, and as the saying goes misery loves company.

    #MentalHealth #ChronicIllness #MyCondition #ChronicFatigue #InvisibleIllness #Thoughts #AlzheimersDisease #Grief #Loneliness #selfcare #Disability #InvisibleDisability #MyalgicEncephalomyelitis

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    Toy Story - An Affur To Remember

    Every night this guy carries a toy upstairs to bed with him, and walks into the room wagging his tail in anticipation of being told what a clever boi he is—which he is 🥰

    He has two Santa toys which are his year round favourites… the other night he dropped them both at my feet—guess he couldn’t decide between them so he carried them both ❤️🎅

    Knowing him, he may also be reminding to hang his stocking up, to make sure Santa leaves a tasty treat—or ten—for him 🎄

    #Dogs #MightyPets #MightyDogs #TheMighty #DistractMe #happyfriday #Friday #Furbaby #MightyPugs #Pug #PugMix #mightycommunity #grateful #Thoughts #Joy #happy #Christmas


    New therapist yet again. Solo roadtrip. Anxiety wanting to visit & oh so much more...

    .... 3rd time is the charm, right?

    Met my new therapist yesterday. 3rd one within the yr. Started Oct. 2021. Already missing my last therapist. Not a fan of repeating my "why" for therapy... a 3rd time.

    Going on another solo trip... 3rd one within the year. First one was November 2021. Last one was July of this yr, out of state. Putting my boundaries in place. Challenging myself & inner voice has been a huge goal of mine this yr. Confusing a lot of ppl along the way. Not sry.

    Anxiety was brutal today. Been awhile too. Still trying to linger around & disrupt ones sleep but I shall not let it. Feeling bad I had to call out of work due to missing more than your average worker. If I was my boss, I'd be upset too... some what.

    Mind is wandering. Trying to figure out if I packed enough warm clothes due to going to a cooler city. Packed enough water & snacks for the road. Will gas stations be open due to the holiday. Roadtrip mind wanders will always be there. Gotta work around em.

    Trying to just breath & relax my mind due to a lingering headache. Knowing everything will be just fine. It always is.

    ..... & THAT'S what's on my mind. Thank you for reading this. You may go back to your regularly scheduled program!

    #Anxiety #Depression #Insomnia #Migraines #Trauma #GAD #Healing #CheckInWithMe #TheMighty #Therapy #Thoughts

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    Random thoughts #MentalHealth #Depression #Anxiety #PTSD #Faith #Christianity #Thoughts #Relationships

    I am amazed that at ages 7 and 9 my Granddaughters there are times they are concerned about what others are thinking about their appearance etc.

    I tell them the uncomfortable truth is “Most people are so absorbed with the same thoughts they probably don’t even notice them”.

    It got me thinking about the times people have expressed their opinion about what I must think about as a Pastor. Honestly most people have no idea. So, at the risk of shocking you all here is a random selection of my thoughts from this morning.

    “I must stop telling people that I don’t care about the recently acquired surgical wounds on my arm and leg, because I do care about them. They are quite confronting “.

    “Chicken and oyster sauce rocks”.

    “I hope the cardiologist gives us the go ahead to travel when we see him Monday.

    “How things have changed. Years ago a Pastor who went on holidays was considered as lacking commitment. Now it’s compulsory for us to have breaks”.

    “I have come close to dying so many times, make the next decades count”.

    “A child who sings out loud is delightful”.

    “I hate the noise of shopping centres”.

    Hello coffee, you are one of life’s wonderful joys”.

    What random thoughts do you have?


    Thankyou, and an update

    Thankyou everyone who offered their support when I posted about my normal MRI and frustration from no answers. I went through the same before almost 3 years ago, and it brings back those memories.

    Where I live in the UK, my healthcare depends on the NHS, and I’ve had no less than 3 hospital referrals in 3 months, and I’ve had countless hospitalisations and doctors appointments over the past year. It makes me feel incredibly guilty, and also in a way just tired.

    I’m tired of feeling ill. I’m tired of gaining yet another issue, or something getting worse. I’m tired of being a bit of a medical mystery with problems. It makes me feel like it’s just health anxiety causing stuff, even though I physically see the symptoms for some problems, have it down on paper and/or have symptoms that make it impossible to function properly because of other problems. I have to keep reminding myself that it is real, and my body can’t fake results for tests that aren’t normal.

    I keep comparing myself to years ago. I would never see the doctors, and when I did they always found something wrong. And now it’s to the point where I don’t want to see the doctors and just want to deal with stuff, because I know it won’t kill me, it just depletes my spirit.

    I don’t know how much more of it I can take. And it’s why my mind doesn’t want to fight for answers after a normal MRI. I am just so tired of it. And I am also just fed up of using NHS resources for no real result or improvement in my conditions. Someone else could have both instead.

    I tried looking into private health insurance, but my amount of medical conditions makes me ineligible for treatment for those. And it’s also expensive. For the first time in 6 years I don’t even have a job, and my benefits have stopped meaning that all my adjustments etc because of my disability now come out of my own pocket/ will eventually have to stop.

    Being young is a blessing, but also a curse when it comes to being chronically ill. It’s a blessing because my mind and body can/ should be able to deal with it better, and it can also handle all the tests and appointments and surgeries that I’ve had/ will have to have. It’s a curse because I know things don’t typically get better or go away, and the idea of having to deal with these issues for the next 50+ years scares me, especially as they’ll likely get worse or I’ll get more problems and it’ll make it unbearable.

    Sorry for the mess this post is. It’s 6am and my brain is trying to fight a headache.

    #ChronicPain #ChronicIllness #chronicallyill #Pain #NHS #young #Thoughts #MentalHealth #tired


    #Depression #ChildhoodTraumaSurvivors #Thoughts

    Does anyone else get pissed when people say things like 'life is beautiful'? I never saw it. I think the Earth is beautiful, I think some cultures are beautiful, I think languages are beautiful. And maybe that is parte of the word 'life' in that sentence. Or maybe not. Maybe if you have come to terms with existing you think life is beautiful. I never did. I never asked to be born. I never wanted to. If you gave me a chance right now to go back and choose, I would say 'no, thank you'.
    And maye that is being ungrateful or disrepectful or whatever to people that have it rougher than me that are fighting to live. It may be, but I really don't care. Good for them, I guess. But I never wanted to exist. Even in my happiest moments, I never found life beautiful.
    Is there something deeply wrong or broken inside me to think like that? I don't know, and I'm not sure I really care.


    Constructive criticism..?

    Does anyone ever find themselves to the point where they are ready to cry where think people are against them? Like when I made dinner, my fiancée said the hamburger buns were dry and I got upset. But he was only saying maybe it was the brand and consistency of the bun? Did I over-think maybe? 🤔 💭

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    I saw this and I thought it was a nice thought. Especially in todays social media driven world, which I don’t partake in. #image #Thoughts #qoute

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    #Life #Thoughts #changes #moods #Reality

    Was this life part of a plan
    Could I change beforehand
    Sad & happy, false and true
    Why did I put my trust in you
    What am I to learn from this
    We don’t all feel eternal bliss
    Is it what we signed up for
    Lean upon your sacred door
    To be fooled into thinking
    Soul is positively shrinking