Hey, how’s everyone holding up? I’m sorry it has been a little while since last posting. Thanks to problems with my host provider and needing to move again to a new one, I’ve been unable to use my site for some time. It should now be sorted, but with how things are going lately I wouldn’t bet on it. I’m sorry things have been too full-on for me so I’m behind on emails and reading/commenting on others’ blog posts, but I do care & I will slowly catch up when I can. I thought I’d do a little Mini Me Update to bore you all with a few updates. Even this has taken some time to write given brain fog and poor concentration, resulting in needing to chop down what turned into six A4 pages of rambling nonsense.
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Ouchy! Body Malfunctions
Tuesday 7.30pm, went into the kitchen… and doubled over in pain. It was excruciating and really bizarre, because it didn’t seem like a bowel twist. A few minutes later and I noticed my tummy and pelvis had distended like a balloon and it hurt like hell so I couldn’t straighten up. It felt like my insides were being pulled out at the same time as sharp pain took my breath away. I’ll admit, it did worry me.
The immediate pain of high intensity was short-lived for maybe 15 minutes, then it eased. It stayed, and is still at six days later, lower mid-level pain when I move and generally uncomfortable with some distention.
But I couldn’t go to A&E, and it would have probably have been a pointless trip just to wait 10 hours to be told to go home and see if it gets better. Spoiler alert: It didn’t magically get better.
The next day and it was still uncomfortable and painful, like there’s pressure build up and something is pulling and there’s an army of little Borrowers jabbing my insides with tiny knives. Three days later and it’s still not right.
It makes me realise how alone I feel in this. The issues I have, the surgery I first had, it’s not usual stuff. The GP and the local hospital don’t understand all about it. Some medics don’t even believe you, think you’re hysterical and take one look at you thinking you look normal and thus nothing could possibly be wrong. The surgeon I see in London definitely would, but it’d be easier to win the lottery without buying a ticket than be able to speak with her urgently.
I left it 48hrs and ended up going to the GP practice to see someone, who had a kind student nurse with him. Between them, they were both baffled. Another doctor was called in, who was also baffled. The four of us looked rather confused at one another.
The upshot is it could be adhesions causing problems, getting something like the ureter twisted or sticking other organs together. As such, my money is on a twisted ureter. It has happened numerous times twisted my little bowel and messing up my stoma. They didn’t suggest a scan, which is par for the course the NHS money-saving. I’m to leave it until next Monday, so that’ll be 6 days after it happened, and if it’s the same or worse then I should get back in touch with them.
The one doc said the idea with the waiting approach is that most things will either resolve on their own, or get horrifically worse. Either way, I should know by then. I guess it’ll have to be a surprise!
Potential Summer Surgery?
It has made me feel a little more sure that I’ll risk the major surgery I’ve been waiting for. I said before in a previous update that a surgeon I saw basically confirmed it seems too little too late now having waited over 4 years for it. The other surgeon is a little more positive, but the risks are high and there’s no saying if or what could improve. It’s frustrating when I was pretty desperate early on when I asked to be referred, but in the years of waiting it may have rendered it less likely to be beneficial while being far more risky.
But now I think I’ll have to risk it for a biscuit. Another concern is creating more adhesions with another surgery, but there’s no way around that. It may not give me a future without all these ongoing daily problems or the permanent pain, but maybe it can allow for slightly smoother sailing to keep me going just a little longer and stop my health from continuing to dwindle downwards. Who knows. I’ve called the hospital to see if it can be arranged but prior experience suggests it may be another 4 years before someone gets back to me.
If this does happen then I’m hoping for an August surgery so I can skip my birthday and thus give ageing a miss this year. But then I’d be missing chocolate cake and self-bought gifts, and that’s a tough one to have to pass up.
Nothing Melodic About Loathsome Lyrical Host
Earlier this year, my hosting contract came up for renewal and I decided to try a fresh new host. I took up a recommendation from a blogging friend to try Lyrical Host. Oh dear, what a mistake.
My friend had a good experience with them and I don’t want to make her feel bad knowing what happened with me at all because it’s obviously not her fault one bit, it’s just that my experience appears to be the polar opposite. Sadly, I’m not the only one, with another blogging compadre contacting me and describing the same problems I was having with these guys.
I genuinely don’t think I’ve ever felt as frustrated, offended and upset with how a company has treated me before. The hosting service and technical side is dire. Customer service at first seems warm and kind, then shows its true colours when you dare to challenge them for messing you around.
A blog migration for a medium-size blog should be a couple of hours. LyricalHost’s migration took about 22 hours. And from that moment, there were numerous problems.
Instead of taking responsibility for the problems or proactively resolving them themselves, they took an “it wasn’t me” approach and made me jump through hoops with no happy ending.
They got me to keep going back and forth with countless messages. They had me run various tests for them and get me to awkwardly have to ask others to run tests. They conveniently claimed they couldn’t replicate the problems so everything must be fine. Problems kept me from using or being able to access my blog for some time, but they weren’t concerned.
They’ve even suggested to me that one of the problems I wanted fixed isn’t important so maybe I should just not bother with it, despite my saying it was important to me and affected who could read my blog. Funnily enough, when your blog posts aren’t immediately showing up on the Wordpress Reader or your own home page, people can’t read your blog posts. Apparently they disagree.
If all other excuses fail, just blame me, my internet or my devices. They simply refused to take responsibility for the problems they caused or their poor service generally.
Oh, and that’s after they deleted a bunch of my plug-ins, installed their choice alternatives (for the security of my blog, supposedly, though their plug-ins caused my site problems), and told me I couldn’t use the theme I’d previously paid for so I had to buy a new one at the last minute prior to migration. More expense I couldn’t afford.
I gave them the benefit of the doubt. I hoped it would get better and I didn’t need the hassle of moving again with everything else going on.
I kept up the to-and-fro for some time. But it became clear that the problems weren’t going to be resolved; LyricalHost were never going to take responsibility and the temperamental technical issues were going to keep happening.
Trying to get a refund for the months not used was another hurdle to jump. They had an answer for everything and it’s reminiscent of gaslighting. You complain and they make you feel guilty for doing so.
I rushed and stressed trying to find a new host. I confirmed with Lyrical Host that I was leaving and wanted a refund. I eventually was able to obtain a partial pro-rata refund for time not used, even though they’ve even screwed me on that and won’t budge to do the decent thing. Even then, they made it sound as though they were doing me a favour with the partial refund out of the goodness of their hearts.
I made clear I wanted a refund and couldn’t afford to not get my money back. And still they threatened to give my money to a Ukrainian charity they’re supporting.
I put on my big girl pants and tried to stand up for myself, stating I wasn’t keen on them threatening me nor trying to make me feel guilty for not being a better person so as to be able to afford to give a huge chunk of money to charity.
A spiteful end in my dealing with LyricalHost, a company who took no responsibility and cared about their customer even less. An odd one, because I can’t tell whether the warm vibe is BS and / or they’re just awful with technical stuff.
I am baffled as to how some have had good experience with this company. My opinion on this awful service? Avoid, unless you want to risk awful service, loss of moolah and a barrel-load of stress. Awful.
I’ve now moved to a new host – Setra Host – but all issues have not yet been resolved. If all else fails, I’ll try Wordpress’ own WP Pro hosting, but the prices there are sky high in comparison to Setra. Unfortunately, I’ve already lost a small fortune with the Lyrical Host nonsense and I’ve no working body parts to sell to afford this WP package or justify the high price.
All of this makes me think I should have given up blogging. I would have, except for how much I love and appreciate the community. It’s the best thing about blogging for me and it’s priceless.
Covid Cautions & Spring Boosters
How’s everyone fairing with the Covid situation at the moment? In England, restrictions were lifted some time ago and the government is full steam ahead on operation sweep-it-under-the-rug, which was kicked off towards the end of last year. Worryingly, admissions and deaths had been creeping up recently and it seems the government haven’t given a rat’s ass, despite calls from scientists and medics to at least reintroduce mask wearing.
It’s a disconcerting no man’s land for the vulnerable, who will find it increasingly difficult to keep themselves safe when the majority of society seems to have already gone back to ‘normal’.
That said, I’m seeing the cost of the Covid precautions and the things we’ve given up in order to stay safe. I see it with others, how they’ve felt, how they’ve changed, their sense of isolation. I’ve seen it age my parents, take away their independence and make them pretty miserable. Some people have had less exercise with not getting out too, so harm is to both mental and physical health. That’s not even counting issues with not being able to adequately access healthcare. What made sense for two years to keep people safe is starting to not be quite as obvious anymore.
Now the question is, what is worse? The cost of continuing to shield or be particularly careful, vs the unknown risk of how Covid may or may not affect you. At least now there are vaccines for many and treatments for some, and the latest Covid strains are thought to be less severe in outcome than previous ones.
Which way do the scales tip for you or your loved ones?
I’ve just got my parents and myself the Covid Spring Booster jab yesterday. That makes three Pfizer vaccines and one Moderna booster. I wasn’t so sure on mixing the vaccines but we don’t get a choice and research is suggesting that doing so for a follow-up booster could be beneficial.
For those that are interested, I booked online for myself and my parents, and there was a limited range of locations and times to choose from so I had to drive us a little to get there. The government/NHS say you need to take proof of eligibility with you, such as for being immunosuppressed. I had printed off medical letters and medication lists pertinent to eligibility but then when we arrived, we aren’t asked for proof. We got signed in and the lady jabbing us just said “I imagine you’re immunosuppressed and this is your booster, right?” That’s it.
I’m seriously thinking perhaps we give it two weeks to work its magic and then give up all precautions other than masks in busy places for the benefit of others. We wait it out, hoping and maybe assuming that if and when my parents get it that they would now be okay, or at least would be okay with access to Covid treatments. My folks don’t know what to do; my dad is too scared to risk it, my mum is fed up of living as we are. The thought terrifies me of my parents catching it, but it also terrifies me to think there’s no end to all of this. We can’t go on like this forever.
If you’re likewise feeling stuck and concerned, please know you’re not alone. While it may feel like everyone has returned to normal and forgotten about Covid, it’s not true. Many people are still being careful and many are still at risk.
A Sleeping Nightmare
I’m not sure if I’ve written about this here before or not, but it’s something I’ve kept relatively hushed up. Why? Because it sounds kinda stupid. Basically, I can’t get up in the mornings. It sounds like I’m being lazy or maybe I need more sleep, but neither of those are correct. This has been one of the most frustrating things I’ve ever dealt with, losing most of the each morning and finally getting up hours later so angry and annoyed. If I have an appointment in the morning, I’ve tried to sleep minimally for 2-3 hours or not at all. It’s the only way to ensure I can be up in the morning.
This mystery is a whole new monster. Firstly, I first started getting lengthy and vivid dreams and nightmares every night since they started in August 2019. These dreams/nightmares happen even if I’ve only nodded off for 10 minutes, which I didn’t think was even possible when you don’t hit REM that quickly. Isn’t that weird? It’s like Nightmare On Elm Street, not knowing what you’ll get each time you close your eyes.
The real problem for me is not being able to wake consciously in the morning for hours, despite up to 20 alarms (no joke) and my mother trying to force me up. Despite being in agony with the nerve damage and needing to pee and sort my stoma bag. I can’t remember anything said or done during these hours, I just keep losing the fight and falling back asleep. After gaining some consciousness, there’s then often a brief spell of physical sleep paralysis.
Sleep for the last two years or more now has been the complete polar opposite of what I’d had in the years immediately following my first surgery, time spent with continually poor sleep and punctuated with countless bouts of insomnia. Now, I often fall asleep more quickly and get auditory hallucinations on the way.
In answer to all of this, my respiratory sleep specialist asked me if I thought I might have narcolepsy. I have laughed and said no of course not, I don’t randomly fall asleep while I’m doing things in the daytime. I didn’t give it another thought.
In going through things again recently, something occurred to me so I thought I’d look online at narcolepsy. And then it all clicked.
It turns out, the very, very little I thought I knew about narcolepsy – that you have to randomly fall asleep in the day while you’re doing things, that it’s genetic and you’re born with it – were completely wrong.
The symptoms actually fit very well with what I experience, from super quick vivid dreams and nightmares, to auditory hallucinations and continually falling back asleep in the mornings. Narcolepsy is also considered an autoimmune issue, which also fits.
So there we go. It seems I likely have Narcolepsy. I never would have thought it.
And now I feel incredibly stupid and ignorant for brushing off what my specialist thought I could have. He didn’t push it at the time because he said it wasn’t his area to diagnose non-respiratory sleep conditions. I’m now guilty of what I get frustrated of medical professionals doing, for being narrow minded in symptoms and not investigating something to get a full picture first.
He said he’d refer me to a specialist sleep clinic for investigation. After waiting 5 months for this, I’ve just called the hospital and found that they’ve no record of any referral ever having been made. D’oh! The question is whether improving what’s causing the immune system problems could do away with the narcolepsy, if indeed that’s what it is, but I’ve no idea. I’m open to other ideas and I’ll look at increasing protein intake (desperate wishful thinking that this could help) as I’ve had such a strange, restricted diet these last few years because of my stoma and such.
This is the problem with often well-known conditions that we only hear the same repeated yet insufficient or incorrect details on, so our social understanding is limited and yet we don’t know we need to question it.
Sometimes we may need to question those commonly held beliefs, assumptions and social understandings of things that we’ve always taken as being true and adequate. Perhaps especially when it comes to health because those misunderstandings or lack of knowledge could get us or loved ones into trouble.
It seems that everything that can go wrong, does go wrong of late. I won’t list all the issues, but suffice to say, a lot of time is taken up with trying to deal with problems. Then there are issues at home, the blog, the legal case, all of it.
I am incredibly far behind on everything. It’s a never-ending cycle with too much all at once. My email inbox has over 800 messages from yonks ago I’ve not sorted. My desktop has files crammed over the whole screen. My downloads folder is full of stuff that needs to be filed. Social media messages and friend emails are still pending. My legal statement needs amending on a very tight deadline. I feel awful behind behind on the latter because I care a lot about all those I keep in touch with, but I’m literally not getting to everything. With time lost in the mornings (at least I know it’s likely narcolepsy), time unwell and non-functional, and time wasted on blog technicalities, it doesn’t leave much to get things done.
Then there are the medical problems. And another response from the GP who tried to take me off my B12 injections for Pernicious Anaemia (PA), which I’ve been on for 10 years. Long story short, he wrote to haematology with damagingly incorrect information and inadequate details, which resulted in a detrimental change to my treatment schedule. It’s no surprise the NHS are cost-cutting in any way possible but there’s no seemingly nothing I can do about it and it boils my blood. I’ve gone blue in the face trying to explain PA to this doctor and the issues around blood testing, intrinsic factor and treatment, but he just doesn’t get it. At all.
I’m exhausted of fighting them, of fighting for my health when you might as well be talking to a brick wall that couldn’t care less. I always encourage others to fight for their health because it is worth fighting for. I still wholeheartedly agree with that when applied to others. It’s getting harder to apply it to myself, but I also think sometimes we just need a breather when we’re going around in circles and not getting anywhere.
My mum was right. I should have gone to the vet.
My Beautiful Mama
After her dramatic attempt to get out of doing the ironing by having a heart attack, it has been baby steps to build my mum’s health back up. To her dismay, she’s on even more medications than she was when she came out of hospital. I’ve told her not to worry – she can’t have another one added because I’ve run out of space on my weekly medication tick list template I made her.
Thank you to everyone who has sent her good vibes and asked after her. It is very, very much appreciated ????
She’s still out of breath regularly after little exertions like slowing coming up the stairs. For some unknown reason, she didn’t fancy pulling up a make-shift bed next to the cat in the garage, so she can’t forgo the stairs entirely. It’s just about building up gradually, getting a little more movement, a little cardio work, small dietary changes and gentle walks.
She still comes out with some absolute corkers. We were talking about something on TV and my mum referred to Benedict Cumberbatch as Reginald Cumberbitch. Close enough! ????
I decided we could do mini workouts in the living room, just 3-5 minutes at a time. Doable, right? Wrong.
I was envisioning lycra ensemble, sweatbands, and pants over leggings, me calling out exercises and sweating up a storm like Jane Fonda on steroids. What we got was the two of us reluctantly going into the living room, me in my pyjama trousers, her in her slippers, slowly throwing our arms around, falling over and literally knackered before we’ve even done a full minute.
Okay, to be fair, my mum didn’t fair all that badly, it was me that was dying upwards. Go figure.
I got carried away with the idea of doing it without remembering one crucial problem: I can’t physically do it. I tried, I really did, and I pushed as much as I could because I want her to get the cardio exercise she needs. I also rationalised that it was only brief gentle exercise. Nonetheless, I was utterly done in, breathless, pain levels enough to tank an elephant, and I couldn’t move my legs properly to begin with because the nerve damage has been particularly bad.
Since the mystery problem with my insides being taken over by violent Borrowers with swords, we’ve obviously not attempted any casual living room exercise. I really shouldn’t have vowed that we’d do two sessions a day on the days we don’t get out for a short walk or to the shops.
Next time I might just find a YouTube video of Mr Motivator and let her exercise alone while I drink tea and cheer her on.
How have you all been? Where are you with the Covid situation? I hope you’re keeping as well as possible.