Sick of being sick

SickandTired

I’ve had severe Long Covid for over a year and I am primarily bedbound/housebound. The first few months were ok, I was thinking positively about recovery and was still able to do some part time hours with my work. In January, I made the decision to resign as I could no longer continue working due to worsening symptoms.

Since resigning, my mental health has continued to decline as any hope of recovery seems like a fantasy and positive thinking is no longer working. I’ve had three attempts since February and I have tried to get help. The couple of times I’ve been to the hospital, I’ve been monitored for a few hours in ED and then sent home with no follow up help in place. I see a private psychologist, but I can only see her once a month due to her workload and it’s not enough. To say I’m at my wits end is an understatement.

I do try and distract myself. I write songs about living with Long Covid and watch TV when I’m up to it. I’m not sure what else I can do.

Over the last few weeks, the thoughts have become a lot worse and I’m struggling to figure out where to turn or how to get myself out of this spiral. I’m terrified I’m not going to make it and I don’t want that, hence I’m reaching out here. I refuse to go back to the hospital just to be dismissed again.

white knight

Hi, welcome

I understand fully. I have also made one attempt back in 1996 and at times life has been a struggle. You are indeed doing all the right things with professional medical people plus the wisdom in writing here in an anonymous place that can help others in similar situations. So thankyou.

Falling ill non work related isnt so good as there's no workers compensation and that generates other hurdles at a time when you have an ongoing medical problem.

You have been writing songs, I write poetry and they can be read here- https://forums.beyondblue.org.au/t5/bb-social-zone/the-poetry-corner-post-your-poems-in-here/td-p/54... some of those poems will make you laugh, some cry, some inspirational.

So distractions is one of my major recommendations and thats already thought of so well done there. Being house bound is no fun. Motivation isnt easy to maintain when your environment restricts you, sometimes the timing of motivation is more important otherwise you are wasting energy at the wrong moments.

https://forums.beyondblue.org.au/t5/depression/depression-and-the-timing-of-motivation/td-p/149708

You recognise positive thinking as a great tool however you know that ongoing it has its limitations. That's tough, forgive yourself for not having the daily endurance to keep that positivity going at the required rate to guarantee safety. Yes, forgive yourself. It's ok, many people would be the same. allow yourself to be "normal" with your reactions. https://forums.beyondblue.org.au/t5/staying-well/30-minutes-can-change-your-life/td-p/154525

So the spiral has begun a little while ago and the hospital has failed in its duty of care (common but not intended- its the system not the staff) so where do you go from here. Well

Rebound your thoughts on the hospital system. Always go back, different staff, different doctors, different outcome. Thats positive.
Keep writing here when and if you desire to. I'm here daily and have lived through some of what you've experienced. I will not give up on you.
Writing in here the magic is not know how many people read your story, might not reply but will take notice of how you and others implement strategies. So you are helping others. A wonderful gift. In fact when you've recovered you'd be a great role model in that field.
Finally, focus on the beauty of life, sit under your verandah, watch... bees... flowers... feather...

LITTLE FEATHER

Little feather left and right

as it falls slowly in the night

coming from a nest above

bed of twigs and a world of love

Down it falls to the ground

A gust of wind to toss it around

then as the sun rose to dry it out

the lighter it was to get out and about

Then along came a bird full of love

to take little feather to her nest above

where little feather was put in a nest

to warm the heart where baby bird rests.... TonyWK

Maybe you can put a tune to my poem?

Your thoughts?

TonyWK

SickandTired

Thank you for taking the time to write such a detailed reply.

I appreciate your advice and your understanding of what I’m going through. I thoroughly enjoyed your poem and will definitely have a read of your other ones. I won’t put it to music as it’s perfect the way it is.

I’m really struggling with the concept of forgiving myself and will check out the resource that you have linked.

Thank you again for your support.

therising

Hi SickandTired

My heart goes out to you so much while you face so many challenges. Based on my own experience, I have to say one of the greatest challenges in life involves the feeling of next to no energy. If 'life' is the feeling of plenty of energy running through us, to not feel that level of energy can definitely become depressing. It's not just mentally depressing or physically depressing (as far as chemistry goes) but also soulfully depressing or what you could call soul destroying.

With time free from work, I'm wondering whether you've considered becoming a full time researcher for yourself. I love researchers, the number one reason being based on the fact they don't believe there's no cure for something, which is why they're looking for one. 'No cure for cancer? Nup, don't believe it. I'm going to find the cure', 'No cure for type 1 diabetes? It exists and I'm going to find it', 'No cure for long COVID? Of course there is. I will discover it'. I just love researchers, their determination and drive. In the era of the internet, research areas are at our fingertips. What we find can be determined by 1)what we put into a search engine and 2)being able to tap into a sense of possibility. For example

If you type in 'cure for long covid', what you'll get is 'there is no cure'. There are ways to simply manage it, which sounds depressing and hopeless. Can't really sense any possibility there
If you type in 'people who cured themselves of long covid', it's a very different story. How to recover to various degrees through 'pacing' is one of many strategies. Nothing quite like being able to sense what hope and possibility feel like

Of course, doing research with next to no energy might involve short periods followed by rest but this redefines you as 'A passionate researcher in search of a cure who needs frequent strategic rest intervals'.

I've found one of the greatest challenges in relation to depression can involve a sense of identity. Who or what I identify as can definitely play a part in emotions, amongst other factors. I can identify as a researcher or not. I can identify as a practitioner of energy redevelopment or not. I can identify as someone who is destined to be depressed for the rest of her life or not (been there done that). I have to say that an absolute game changer can involve identifying as a 'feeler' or 'sensitive'. Then we can confidently ask ourself 'Is what I'm feeling/sensing deeply depressing? (Yes/No). Is what I'm feeling/sensing soul destroying? (Yes/No). Am I sensing the inability to keep on living while feeling next to no energy or life running through me? (Yes/No). Am I feeling/sensing the lack of support I need in order to gain the physical and mental energy I need to escape this hell on earth? (Yes?No). The thing is we need to become conscious of what is is we're sensing. 'Hell on earth' would be the feeling of seeing a guide once a month, being led to believe there's no cure, being left alone with inner dialogue that would test a saint etc. Heaven would be the feeling of regular access to guidance at the most depressing time in our life, being led to believe in incredible possibilities and being able to hear our inner sage at its wisest and most supportive. Who or what we can feel as leading us upwards vs who or what we can feel leading us downwards is definitely something worth gaining a sense of. ❤️