Grief and Long Covid

One of the saddest things about being in #LongCovid support groups, is new people who join who have gotten the condition in the last 6-9months, hopefully looking for a cure or treatment to get back to living their life.

They are frequently shocked to find there are no treatment protocols for #LongCovid approved by the HSE. All the clinics do is offer referrals to treat post covid consultations & symptoms.
We don’t even have the basics the NHS has about trying antihistamines.

When all the post covid conditions have been catalogued, & somewhat medicated, there is nothing for the crippling fatigue & brain fog.  For for the condition of #LongCovid it’s self.

None of the research being done in other countries about MCAS or microclots or viral debris, has been accepted here.
So they then want to know what supplements people are on or have tired, as Dr’s won’t talk abut or recommend them.

But while some of them may help, a small bit, none of them touch the chronic nature for #LongCovid

The latest thing we are now being told is, that our immune system is not behaving cos we are stressed, to quit #LongCovid support groups & try just to get on with our lives.

To be mindful, & work to get our parasympathetic nervous system to chill. So pretty much blaming us for our condition.

There are also people who are confused & then angry that they have gotten #LongCovid when they have been vaccinated, and if there is a vaccine, why isn’t there effective treatment.

They go through the entire cycle of grief. Which I know I am still in about how #LongCovid as restricted my life. I cant work, I have chronic pain, chronic fatigue, 7 new medical conditions I am on medications for and cost me a significant romantic relationship.

I understand their hope, hurt, disappointment and anger.

We need better led #LongCovid clinics, many infectious disease consultants do not want to be dealing with Long Covid.

And the HSE has to stop looking for the lowest cost ‘treatment’ for #LongCovid and the Dept of Social welfare keep not approving people for invalidity or disability payments.

Every time you get covid there is an increased risk you will develop #LongCovid even if vaccinated, many people new to the support groups were completely unaware of this & feel public health messaging let them down.

We are being ignored, written off, blamed, and gaslight about having the chronic condition with is #LongCovid.

At least 1 was 45 when I got it 3 years ago, I had lived some what of my life, unlike those in their 20s and the kids who have #LongCovid.
Right I am off to take my evening meds and extra pain killers cos this weather makes both the chronic pain and chronic fatigue harder to deal with.

Flesh and Steel

I am currently reading Flesh and Steel by Guy Haley. It is a #WarHammer40k book which finally deals with the gruesome creation of servitors, the systemic inequalities which degrade & oppress the ordinary citizens of the Empire.

The set up is well done, an investigator who has an augmented arm replacement, has to work with a tech-priest as body is found & the case over laps their jurisdictions. It’s an interesting mystery & delves into parts of the #WH40k universe I’ve not read before.
https://www.blacklibrary.com/all-products/flesh-and-steel-ebook-2020.html

Where is the life that late I led?

I miss when 7 hours sleep was a good nights sleep for me and I was grand to do what ever I wanted for the day.

These days its interrupted sleep and It’s 12 to 14 hours, and I spend most of my day on the sofa, doing very little, and still feeling tired. Also when ever I make plans, 1/3 of the time I have to cancel. I miss my old life.

With apologies to Mr Porter.

Where is the life that late I led?
Where is it now? Totally dead!
Where is the fun I used to find?
Where has it gone? Gone with the wine!

A Covid life may all be well
But resting just there
Could never compare
With raising a bit of hell
So I repeat what first I said
Where is the life that late Ied?

Vigils in memory of Michael Snee & Aidan Moffitt

A number of vigils in memory of Michael Snee & Aidan Moffitt will be held across the country in the coming days.
If more should be added, we will update this post with new info in the comments.
As of now, these are the vigils confirmed. Please check locally in case there are any changes.

Belfast: Friday, April 15, 6pm, City Hall
Cork: Monday, April 18, 6pm, Bishop Lacey Park
Carlow: Friday, April 15 , 6pm, Liberty Tree Fountain
Dublin: Friday, April 15, 6pm, Dáil Éireann
Galway, City: Saturday, April 16, 7pm, Eyre Square
Galway, Loughrea: Friday, April 15, 5 pm, The Long Point
Kerry, Tralee: Monday, April 18, 7pm, The Square
Kildare, Newbridge: Friday, April 15, 6pm, Liffey Linear Park
Killkenny: Friday, April 15, 6:30pm, Town Hall
Laois, Portlaoise: Friday, April 15, 6pm, Laois County Council Plaza
Leitrim, Carrick-on-Shannon: Monday, April 18, 6pm, Town Clock.
Limerick: Monday, April 18, 6pm, Arthur’s Quay
Louth, Drogheda: Friday, April 15, 6pm, Tholsel
Louth, Dundalk: Friday, April 15, 6pm, Town Square
Mayo, Ballina: Wednesday, April 20, 9pm, Tom Ruane Park
Sligo: Friday, April 15, 6pm, Town Hall
Tipperary, Clonmel: Friday, April 15, 7:30pm, Main Guard, O’Connell Street, Clonmel
Tyrone, Omagh: Friday, April 15, 7pm, Omagh Courthouse
Waterford: Friday, April 15, 6pm, John Roberts Square
Westmeath, Mullingar: Friday, April 15, 6pm, Mullingar Park
Wexford: Friday, April 15, 7pm, Wexford Quay
Wicklow, Arklow: Monday, April 18, 6pm, Arklow Bandstand
Wicklow, Blessington: Saturday, April 16, 6pm, The Square in Blessington
Wicklow, Bray: Friday, April 15, 5pm, Bray Bandstand

From https://gcn.ie/vigils-michael-snee-aidan-moffitt-across-ireland/

Trans Day of Visibilty

I just wish we were in a place where trans and non binary people were just respected decently, and had access to proper consent based, timely healthcare.

Non Binary and gender fluid people, don’t have the legal recognition they need, and the current healthcare is practically useless.The current healthcare for all trans people is gatekept appalling, is out dated and is harmful. Unfortunately to lobby and make changes it requires people to make themselves visible in a way which is often incredibly uncomfortable and frankly has dangers associated with it.

People shouldn’t have to make themselves ‘Publicly Visible’ to have basic healthcare.

Love and Solidarity To you all..

Text says, One in three transgender people identify as beisexual+

IMAGE of 3 people, 1 waving a bi pride flag, one waving a trans pride flag, one drapped in a trans pride flag.

Breaking Barriers!

Breaking Barriers is the theme for the Abortion Rights Campaign 10th Annual March for Choice; which will be a static demo due to Covid.

The Demo is taking place on Kildare Street and speakers will be:

People are still having to travel to get the Health Care they need. The promises made to introduce proper sex education, safe zone and free contraception have not been kept. We have come a long way over the last 10 years but there is much work to do.

We should be gathering

We should be gathering in my Grandmother’s house. Talking, listening, laughing, crying, for my Uncle died yesterday, after a long battle with Cancer.

I should be helping with endless pots of tea, making trays of sandwiches, lining up apple tarts on the counter top next to the fridge covered in magnets and washing another and another round of mugs, as family, neighbours and friends call in.

For the house to be full of people, some sitting on the arms of the armchairs, and spillin out into the back garden; but none of that can happen.

None of the rituals or gatherings which allow us to offer comfort with a glance or a touch. We won’t get share stories, to listen to our elders and our generation speak of him. To learn more of our family history, and the bonds between them, the ache when the first of siblings dies. To raise a glass together.

I should be in the kitchen or often as we were as grand kids, out in the back garden or even sitting on the stairs among family. But we can’t gather, and it is crueler then I could of imagined.

But we mustn’t gather so we do not loose anyone else.

Long Covid

I still can’t have a shower without my heart having episode. It was 122 beats per minute when I first but the oximeter on. Poxy covid, 4 Months on & I am still a wreck.

Blood oxygen and heart rate.

And this is with me being on medication to lower my blood pressure. But sure the MRI and contrast scan say there is nothing physically wrong with my heart and vessels. And my blood work comes back normal. So no one fecking knows.

I had what was considered a mild to moderate case of covid infection. Wasn’t hospitalised, didn’t need oxygen. But I still get sore lungs, am on steroid inhaler but again, x-ray and MRI say my lungs are normal. How out of breath I get says otherwise.

And recently I have added my fingers to the places I get painful joint ache. Yes I am having a whinge, it’s been 4 months of no real answers, treatments which only make things sort of bearable, and on going fatigue.

And no idea when things will get properly better, I keep hearing 3 months things might improve, then 9 months. It would be nice to have a poxy shower and not need to rest for an hour after. Yeah I’m angry, so please #wearamask#StayAtHome you do not want this.

I was a fairly fit and active 45 year old. Zero cardiac issues or episodes. Zero respiratory issues bar hay-fever. Zero issues with inflammation of tissues or joints. My life has ground to a stand still, with long covid, or post covid viral syndrome.

Please just hang in there and follow the guidelines, the vaccine roll out has started. I wouldn’t wish this on anyone. Please Keep yer distance. #wearamask#StayAtHome

Gender Recognition Act and those who are 16.

This is a really good read on the issues with the Gender Recognition Act as it stands in relation to those aged 16 to 18.

https://www.irishlegal.com/article/stephen-kirwan-pitfalls-and-uncertainties-in-ireland-s-gender-recognition-laws

The current #GRA does allow for those who are 16+ to apply, but there are considerable hurdles.

What if the person who is 16+ is estranged from their parents?

What if they have the support of their parents, but can not afford to pay privately for the consultation and paperwork?

It means we have in place laws which say a person aged 16+ can consent to medical procedures and see medical professionals with out parent/guardian permission, but can’t apply for the #GRA

Why is #GRA important for a person who is 16+? I’ve had people say sure they can just wait until they are 18. Well firstly 16 is when we sit our first state exams, it is when our legal and public Id which we will use for our professional life starts.

It is just not possible to have your leaving cert results issued under a different name at a later date. Also for people are in non gender mixed schools, it’s frankly hellish and if the only other local option is also non mixed, school policy often won’t allow a transfer.

If 16+ were allowed to self ID the same way as 18+ are, then it removed the barriers which can take over 2 years anyway. It means they can sort out all the paper work to live authentically as themselves, and not have to always explain.

A person does not have to undergo surgery or hormones to apply for their gender to be acknowledges by the State under the #GRA
16+ plus can already legally consent to any surgery or treatment currently in our healthcare system, if they meet the criteria for it. Extending the #GRA to allow them to self ID will not change that.

What it will do is frankly save lives and save the quality of someones life. Given the high rate of young trans people ending their lives and the impact tranphobia can have on a person’s mental health, extending the #GRA fully to 16+ can only be a good thing.

What it will allow is for those who are 16+ to wear the school uniform which aligns with thier gender, where a school has gendered uniform policies. #GRA

Another failing of the #GRA is that it is very Binary. It does not take into account people who are #NonBinary, #Agender or #GenderFuild. Trans people are expected to fit into a very binary system of gender conformity and gender expression.

This mean that these trans people are left with out legal recognition under #GRA and often access to services. The trans healthcare we have also is stuck in this binary mode and those who discover they are non binary are considered to have dropped out or failed to transition.

Which means they don’t have access to the medication which adjusts their body to what is optimal for them. They face hurdles when it comes to work and don’t have the support they need. #GRA should include #NonBinary people and those who are 16+

I do my best to be an Ally, I am cis and I have trans people in my life. If you are a cis person who has genuine question, I am happy to answer them the best I can.