Long Covid: Does This Never End?

 It’s been about six months and I REALLY need to start updating this blog a lot more. I’m aiming for fortnightly. Fortnightly, yeah.

So, to update those who aren’t new and to give a background to those who are, I’m a nurse who caught Covid in the first wave. For reasons, I wasn’t tested. Took me nearly six weeks to initially get back to work. Within a month, symptoms of what we all now call Long Covid started kicking in. I’m now on my second period of long term special leave (aka sick leave) with no end to it in sight. I’ve got neurological issues, a long QT interval heart rhythm, worse asthma, increased pain and now walk with a rollator. I have insomnia, dizziness, unexplained tachycardia, altered smell, no appetite and things just don’t work. My GP has done what they can, but there’s no obvious referral pathways and I still don’t know what it’s done to me as beyond some blood tests, a chest x-Ray, ECG, 24 hour Holter & cardiac USS, nothing has been done and it’s all been basic. I’m waiting for two referrals to send appointments. It’s constant waiting and I had no other help. In desperation, I self referred myself to the council and have now had some more aids delivered, am waiting on a safety rail for my shower and physio input, but I’m not fit enough to actually do rehab exercise. I’m now referred to a dietitian. I’m also waiting on my pharmacy dosset boxes to start as I keep forgetting to put meds in the boxes I was doing myself. I’m on so many supplements that I swear I rattle. They do help. Kind of. But it’s hard to remember and I lack energy to do much, even wash, dress or feed myself properly. 

And one of the cats now has a long term condition, oh joy. Thank god for insurance. 

We had a debate in our parliament last week: I was unimpressed by the government’s attitude. On a personal note, I’ve been unimpressed at responses I’ve received to letters I’ve sent asking for SOME support for healthcare staff. 

I genuinely feel like I’ve been left to rot without knowing what’s actually wrong. I can’t afford to go private and I certainly can’t travel, even if I had the money, to centres who ARE testing for things like endothelial damage and microclots. 

Financially, I’ve taken a hit as well, tho hopefully that’s going to resolve itself recently. I do have a GoFundMe now, which some very kind people have donated to. It’s paid for the cat and some bills in the meantime. I’ve also gone to StepChange to try and sort out my unsecured debt which was out of hand. But I’m so worried about losing my job, as I’ll lose my home. Nightmare scenario. 

I’m involved in advocacy - I work with Long Covid Scotland and was also recruited for a profession-specific group as well. I do what I can, but I’ve had to take time off as I’ve not been well and pushing myself far too hard. 

It is really hard to have to deal with everything going on and the state I’m actually in. I’ve never been like this before in my life - not to the point I am struggling to look after myself. After more than two years, the future really is uncertain. 

So that’s the update. Don’t catch Covid. Please. You’re risking Long Covid, especially if you have underlying health conditions. 

More posts soon!

Long Covid - the unpleasant gift that keeps on giving, though you don’t want it to

 It’s been a while since I last posted. A lot of that has to do with the fact I have been unwell since I had Covid last April (2020), with the most severe symptoms kicking in at the end of August last year, following over-exertion and a mild cold. I won’t bore you on this post with the extent of them, but suffice to say I am fed up of the condition at this point, as well as the constant myriad of symptoms that plague me daily. 

Here in Scotland, we don’t have Long Covid (LC) clinics, so every single referral is to a separate service. To date, I have had basic testing which, from research amongst my peers, doesn’t necessarily show the extent of what’s going on. I have had few explanations as to what is going on. Currently, I am believed to have what is called Postural Orthostatic Tachycardia Syndrome (PoTS), waiting on cardiology appointment. That’s next month. Given how things have gone, I’m expecting to be told to go away and nothing further to be done. There is one PoTS specialist in Scotland and they’re not in my trust area. I am reliant on the PoTS U.K. website for support and suggestions, but much of my symptom alleviation is down to self experimentation with supplements recommended by peers within the community. My online community, found through joining Facebook (FB) groups, has been my saviour, literally.

Coming up for Christmas, I am here wondering what the future holds. I have not been able to afford Christmas presents, especially as I was told on Friday that my career is now at risk due to the level of absence I have had. Partially this is down to some kind of weird limbo I am in due to diagnosis of Long Covid, as in I do not formally have one, despite the National guidance on the subject. Why don’t I have one? I got sick during the few week window where testing at home was not done, but if you couldn’t drive there was no transport. So I was not tested. Given I am in debt, I am sitting here faced with losing my home, on top of the multiple other indignities ongoing. I am currently thinking about income streams, so perhaps I will ask for donations to help write this blog. I have two feline children to feed, after all. 

I will write more in the coming days and weeks about my experience. I will also write more, if nothing else to justify one of those coffee donation account things. I may even set up a gofundme as it’s looking like I will need one. 

If nothing else, over the last year, my LC journey has made me realise I have to treat my disabled body with respect, that it won’t keep up with everyone else’s. Unfortunately, the world expects my disabled body to do so, meaning it frequently breaks down due to the continual stresses and strains of being Neuro divergent on top of the now more obvious physical constraints I have.

Be well. For me it’s now day two of Hanukkah and I’m off out to find me some soufganiyot (that’s jam doughnuts to you). Chag Sameach Chanukah, if you celebrate this. 

Bah Humbug

Well, that was fun...

I have just got home from a party where I lasted 20 minutes. There wasn’t a space for me to go and do some mindfulness, so I just left. Being Aspie means I’m not great socially, especially around new or unfamiliar people and the behaviour of three individuals (who will remain nameless) was actually extremely distressing. One glared at me, then ignored me. Pointedly. Another said hi, then turned away instantly and I felt blocked from saying hello to the rest of the group. The third was their usual self, but I always feel like I’m not wanted. The hosts were absolutely lovely, but they were busy and it was difficult to speak to the people I do know. All in all, a bit symptomatic of how things are for me within local politics. I am feeling politically homeless, not by belief, but by the way a number of individuals have been behaving. I feel like I am being pushed out and ignored, which is upsetting me a lot, as next year I was going to go for approved candidate. Another new year, another year of me feeling like there is no point in doing so. Why would I when I won’t get the support I need?

Now bear in mind that a lot of that is my old brain, as my psychologist would put it, and it’s programming talking. If I had felt more up to it and not overwhelmed, I would have gone and sat down and reminded myself that people don’t hate me, lots find parties overwhelming etc. In a good way. As I said to someone this evening, it is absolutely ok to give yourself space to experience all sorts of emotions.

This year is always difficult for me: I miss my (surrogate) grandmother, who we had goose with every year, I miss my parents - for all their failings - and when my family aren’t around, no matter if I can only manage ten minutes before screaming, I do miss them. On the plus side, a friend is coming over for food and I’ll see some lovely folks while I have time off and then it is into the new year, with a new job and a lot of positive feedback. I have achieved a tremendous amount this year, both professionally and personally and that is what I will take into the New Year.

Just be kind and remember that the person in the room that looks awkward is possibly struggling for all sorts of reasons and it’s the season of goodwill.

Happy Holidays, everyone.

Heidweasels

It really has NOT been the easiest few weeks. I mean, there was the boiler disaster, on top of the Shutdown From Hell at Work. Then I had to do CPR on my doorstep (LITERALLY on my doorstep).  It is fair to say that I have been struggling of late. A bit like either treading water when you cannot feel the bottom or a fish out of it.  Neither is pleasant. Also, Fluffy Minion Has had to have three teeth out, bust a stitch because Fluffy Minion does not do wet food, so now has another week of antibiotics and also is not feeling at all the thing with a sore mouth, human slave forcing said antibiotics down its chops twice a day. Fluffy Minion (and human slave) are unimpressed.

Also, the local disability shenanigans going on. And then there’s the antisemitism. I had to block two people (no loss actually) and now my imminent birthday plans might be cancelled at the last minute.

So colour me surprised when I just could not cope with the idea of the public meeting tonight. I’ve got a document to write for this campaign, plus a motion to write for the same thing, amongst other things. And more work crapola. I am back to feeling like my life is going to Hell in a hand basket and I don’t like feeling this out of control. So I decided to exercise some self care and come home once I dropped off my buckets (long story).

What does this mean? It means HELLO HEIDWEASELS!

Last week I had a Very Bad Time. As in I was actually planning to do something Very Unpleasant. As in planned a LOT of it, which is quite unusual in that I do not get to that point very often. Really, I don’t. Having been criticised for NOT sharing, I did and didn’t get a response from some busy folks.

That, dear friends, is like ringing the sodding dinner bell for the heidweasels. They have taken up residence and they appear to be settling in. Fuckers.

Heidweasels are the charming (not), negative messages I have going on in my head. They are there every day and some days they are over-powering. Seriously. I tell myself that they only feel this bad because the therapy I’ve been having *is* effective and tackling them. Yeah, right. Let me introduce them: In the first corner, we have Stop Bothering People, in the second there is You Don’t Deserve It and bringing up the rear is You’ll Fail Anyway, So Why Bother? The first two are the main offenders and feed into each other (sinister, tag team anyone?) and I’m pretty sure number three will be along any time now. By the way, there are more. Anything and everything negative I think about myself eventually comes back to this. All the anxiety I feel at everything etc etc etc. And I know who gave me those messages. It would have been her birthday last week.

What this means is that, along with the monthly inevitable (and yet another reminder I have to make a decision about *that* cancer preventing surgery), plus my birthday and the usual depression about not having children, all of the above means I am spending more energy than usual on trying to smack them down and it is really bloody hard. And exhausting. I’m tired, upset and fed up. So every little knock, every perception that I’m a horrible person, every small mistake and it escalates and magnifies pretty sodding quickly. EVERYONE tells me to share this, my therapist, my friends but people I know really do have a shit load going on and, guess what, I don’t want people to hate me or avoid me because of this AND because of message number one, i usually just STFU and get on with it, with the occasionally bonkers and self-loathing message getting out as a hint.   Also, I did share this but I think the person in question missed it. And also the guy I was last sort-of dating? Might be a narc. Yay.

In short, the Costumeer is pissed off with the world, worried about her job, paranoid she is saying the wrong things to people and seems to have an infestation of heidweasels. Which is not a good thing if it ends up with another depressive episode (what is it about me and Mid-May for sodding episodes of depression?)

On the plus side, there’s a new season of Grimm AND New Adventures Of Monkey on Twitter, I can now get Cully & Sully soup locally and my neighbour’s dog loves me. And I made it through 80% of a conference yesterday. So go me.

Please excuse me, the heidweasels are laughing at me. I need to go and hit them with chocolate and mindfulness.

PS my birthday plans might all suddenly go tits up too. One remains unamused and wants to win the lottery, please.

Difficult Days.

Take it from the nurse: You’re never quite prepared for certain events.

The Costumeer has been quiet for a bit, mainly because I haven’t had the words to post about the kerfuffle I have experienced in relation to Gender Wars, or all the other things in relation to Certain People On The Left Of Politics saying really unpleasant stuff about the holocaust (newsflash: members of my family were gassed in Auschwitz).

I have had a trying few days with my new boiler going in and other associated works, so I wasn’t looking forwards to the engineer coming in today.

Intercom buzzed. I opened my door and then all hell broke loose.

No, the plumbing is (mostly) fine, but someone else isn’t. I cannot say more than that just now, but suffice to say I’ve had a pretty ghastly week on annual leave and this morning just took the biscuit. I’m off out for a spot of lunch (and to use a functioning loo).

Pip pip. I intend to post controversial stuff very soon.

On The Abortion Act

Today is the 50th Anniversary of the Abortion Act in the U.K. At a time when women’s reproductive rights are under attack globally, with women facing imprisonment for having a miscarriage, where women have died in Ireland, because the doctors had their hands tied by the law and in America, where Abortion rights are increasingly restricted and people have their rights to use the Pill under attack.

In 1967, women in the U.K. could die or be left sterile at the hands of backstreet abortionists. Some of them were very good, but many were not. Desperate women, who couldn’t afford to seek treatment in private clinics abroad, had few options: disgrace and a mother’s home, where their child would probably be adopted, forced into marriage or a backstreet abortion. This was before the days of oral contraception being widely available. 

My mother was a young solicitor, working for the civil service and she was asked to join the drafting team. My mother was an incredibly intelligent woman, who could look at all the evidence and make a reasonable decision. She knew that this Act was the right thing to do and worked on it. For her, it wasn’t about killing babies, a claim the pro-life crowd often make, it was about saving the lives of pregnant women. Remember, one of the criteria relating to abortion is about the mental health of the mother? I often wonder what stories they heard or experiences she and the rest of their team had to put that consideration in.

Abortion isn’t about getting rid of unwanted pregnancies for convenience or a form of contraception. As someone who has nursed people, I know the reactions they have and I don’t judge them at all. Every individual in this situation has made the decision they have for a reason and it is their right to do so. I don’t have the right to decide what is right for anyone else. I mean, gender selective abortion, using it as a form of contraception because nothing else has been used - well, yes, I have a problem with that. I don’t believe in abortion personally myself, but I am pro-choice and I will defend any person’s right to safe abortion with my life, because I do not have the right to force my beliefs on others. I am a supporter of Daisy Chain - an organisation who offer support to women having to walk past protestors for appointments at clinics. Pro-life groups harass already vulnerable people and I think it is appalling. I’d like to see them excluded from hospital premises and put under a minimum 100m ban from approaching. Their right to free speech is interfering with medical treatment and they have no right to badger anyone about why they are going anywhere for any procedure. 

In many cases, people choose abortion, sometimes for their own health. For some, it’s related to serious genetic and other conditions that have shown up on prenatal testing. These are all difficult decisions for people.

I once asked my mother about what she thought about the Abortion Act, given she had five children and refused a termination for her fifth child, even when told she would probably die at birth or the baby would die (for the record, she had her fifth section and my sibling was just fine). She had a lot of people, including her own retired GP father telling her to have a termination. She told me quite simply that it was about the numbers of women who were dying, contracting infections, becoming unable to have babies in future. She was shocked at the figures she was seeing. That was why she supported the Act and it’s drafting. She then told me that within a year of it becoming law they knew it had worked.

The numbers of women dying dropped. The new law had saved lives.

So today, I will be thinking about my mother, who, for all her faults in parenting me, made such a massive contribution to women’s reproductive rights in this country. 

Thanks Mum.

Me, too

This is going to be a difficult post for me. I’ve not been as forthcoming as I could have been on social media, mainly because I struggle a huge deal with my self esteem and confidence and the ASD has resulted in my not forming any relationship where intimacy has resulted. Due to resultant control issues (partly down to abuse I endured as a child, partly because of the ASD), I have more than a passing interest in BDSM and, around ten years ago, I was exploring that, non-sexually, and making friends who understood and did not judge me for having ideas and being inquisitive about things that other people thought made me “a freak” or simply completely got the wrong end of the stick.  I am not a freak. I am an individual.

I had been raped before: my second sexual experience was being raped, in my own bed, aged 18, by someone my flatmate had invited back to our flat. He would not take no for an answer. I experienced first hand the instinctive blame put on the victim by friends of the perpetrator. It took me a decade to go to the police and by that time, they couldn’t track me down. But they did listen.

When I was training in a city away from home, I started to explore my different interests within the community down there. I felt a real sense of freedom and release at being able to express myself to the fullest sense possible of my identity. I am what is known as a switch and I am also poly in direction too. I am both dominant and submissive. I like men and women, although it is more of a thing that I simply find things about people attractive and I don’t define myself as one thing or another. That’s a conversation for another time.

Then I met someone I thought I could trust to explore these things with on a sexual level. We talked a lot about various things and I felt I knew him. There is, in this kind of thing, situations where you have a mentor and also partners. I knew he was seeing other people. I assumed I was being invited into that collective. I assumed he would take precautions. That assumption has haunted me for ten years.

The circumstances of what occurred meant I would never even have been able to pursue charges being laid. Suffice to say, I was very clear about what was OK and not OK and I was ignored. At the time, I was not in a position to be able to do anything about it. My trust, which in this case is paramount, was utterly betrayed. I had said no, I had used my safe word and he had refused to stop. That’s rape.That is all I am saying about it. The next morning I went home and later that evening discovered from him that all he had wanted was one night of sex. I felt humiliated, betrayed, deeply upset, utterly vulnerable. I stepped back from the community for a while, to lick my wounds and be more careful.

Except that this wasn’t the end of it.

Two months later I had to report to the GUM clinic, because of symptoms I had been having. I discovered that I had Pelvic Inflammatory Disease, bilaterally. For those of you who know about this, you’ll know that’s not good. I was examined and asked for the (male) student not to be in the room. I was ignored. I was handed two lots of strong antibiotics for a significant period, which made me feel very unwell and on the advent of my 33rd birthday was told, possibly incorrectly (I have since discovered the clinic has a habit of mixing up notes) that while I hadn’t contracted any kind of blood-borne disease and while it wasn’t Gonorhhea, Syphilis etc, the damage that had occured meant it was highly improbable I would ever have children. 

Let that sink in.

As a responsible adult, I contacted the dickhead who did this to me to inform him which is when he told me that one of his partners had had a UTI and they’d had unprotected sex. He casually informed me that it could be transmitted through sex. Eye-opening. I was devastated.

I decided, realising the legal route wasn’t an option, with the support of some friends, I told our de facto community leader what had happened, because of safety concerns for others. The result was that while he continued to be a respected member of the community, I was ostracised. I no longer felt safe going to events or clubs, let alone exploring anything with my friends. And i was developing quite the skill with a bullwhip. I still support the community. I still want friends in the community, but I will never again want to be active in that way. This event destroyed that - and sex generally for me - I thought permanently. I have not trusted close male friends for a decade. Until two weeks ago, I had not even kissed someone in seven years. I have met someone quite wonderful who I am having an unconventional friendship with, but it is slow going. I’m going to have to tell him the above, in far more detail: I am not looking forwards to it. 

Sex was always something where people just wanted the physical act from me. Even in an 18 month relationship, they had no interest in intimacy. My sexual history has been occasionally falling into bed with someone and a crippling lack of confidence and self esteem to approach people I liked, along with sheer terror of my emotional responses. On top of that, one delightful horror, jealous at my “getting to someone first”, got that partner drunk, got him to tell her everything I had asked him to do in bed and then, I kid you not, told all of our mutual acquaintances. And this guy? The first person I had trusted to sleep with after the first rape. Some 18 months later. It was another 18 months before I went there again and in typical questionable judgement, that guy knew how vulnerable I was in so many ways, yet not only split up with his girlfriend for a week to sleep with me, guilt free, but also then threatened me with that if I ever told anyone about it, he would just say I was crazy, making it up and people would believe him, not me. Unfortunately for him, he we overheard saying that. This guy had been someone I trusted implicitly. It was devastating.

A friend put up a post a couple of days ago about what happened to her at the festival and the response of people around her to it. There has been some backlash. I sort of understand their reaction, but I deeply understand hers, too. Which is why I am writing this post, now. In some ways, I a, disappointed in some of our mutual friends. I am not sure they are truly taking the time to understand and respect her experience and what effect it has had on her. 

I have alluded to some of this on a comment on that post. I’m not sure of what will happen. What I will say is that it has taken me ten years to start exploring intimacy and challenge these - and other associated - demons. 

This isn’t the only occasion something awful happened to me. I do hope it was the last.

#metoo