Home My Journey Mini Me Update [06/05/2022]

Mini Me Update [06/05/2022]

by InvisiblyMe

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.

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.

A bright pink background. A man in a white t-shirt has his hands up in frustration. He looks angry and is biting his lower lip as though he's going to swear or scream.

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.

A bit like heart attacks. Most of us may think of someone clutching their chest, when that’s not always (or even often) how it’s experienced and it’s certainly not the whole story

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.

Ongoing Frustrations

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! ????

Workout Time

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.

A bright pink background with a woman stood in the middle wearings stripey leggings and a bright blue lycra bodysuit. She has big hair, a sweatband on her head, 80s jewellery and is holding weights.
Yeah, this didn’t happen.

 

A black scroll divider.

How have you all been? Where are you with the Covid situation? I hope you’re keeping as well as possible.

Caz  ♥

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34 comments

Sandee May 7, 2022 - 4:51 pm

I’m so sorry you’re having such a rough spot all around. I wish I had a magic wand and would end all your health issues and computer issues too.

Have a blessed weekend, my friend. ♥

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InvisiblyMe May 9, 2022 - 3:51 pm

Thank you lovely – I would certainly take a magic wand to sort the technical issues that are still ongoing. I feel like tearing my hair out, even though it’s such a ‘first world problem’ it really is very frustrating! I hope you & hubby have a lovely week ahead ???? xx

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Looking for the Light May 7, 2022 - 4:52 pm

Caz, you have so much on your plate, you’re stressed out and frustrated. Maybe you are depressed. That may be a stretch for you but for me, stress throws me into a depression and funk.

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InvisiblyMe May 9, 2022 - 4:07 pm

It’s funny you say that. The psych for my legal case has given her thoughts on how I am and it’s not pretty! It’s hard to see it or admit it when you’re applying it to yourself though, isn’t it? I really do hope you’re holding up okay, Mel. Sending lots of love your way ???? xx

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Bar May 7, 2022 - 5:19 pm

Oh Caz, this was sad to read. You have been to hell and back and are still not out of it yet. All I can say is that my fingers and toes are very tightly crossed that you soon get some proper help for your health. Lovely to hear your Mum is with you even if your keep fit didn’t work out so well. Take care. Nice to have you back here again.

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Ashley May 7, 2022 - 5:19 pm

Wow, what an absolute clusterfuck. I’m so sorry you’re having to deal with this. The NHS seriously needs to get their shit together and stop fucking patients over. And good to know about Lyrical Host – I was thinking of switching to them when my WP.com plan is up for renewal, but I’ll steer clear now. That’s so shitty of them to blame their own fuck-ups on you.

I wonder if Akismet will mark my comment as spam because of excessive swearing…

Hugs. ❤️❤️❤️

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InvisiblyMe May 9, 2022 - 4:13 pm

The NHS has let down so many just during the last two years alone. The stories you hear are absolutely awful, truly heartbreaking. And in many cases I can’t figure out how or why so much was shut down because it certainly didn’t stop thousands from catching Covid in healthcare settings!

I do love a good use of “clusterfuck”. I think that may be one of my favourite words (word or term?).
With Lyrical Host, I just personally couldn’t recommend them. I would rather pull my toenails with pliers out before having to use them again.

I hope the week ahead treats you kindly, Ashley ???? xx

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Michael May 7, 2022 - 5:39 pm

It sounds like you could need some holidays. Isend you best wishes and blessings to overcome all these issues life is giting sometimes without asking before. At first best health recovery! xx Michael

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Liz May 7, 2022 - 5:56 pm

Sorry to hear regarding your health and the blog issues. All of these will have been very stressgul times. Especially when fighting for your money back for shitty service.

It will take time for your mum. Whatever her goals, remind her it doesn’t matter how long it takes, if she gets from A to Z that’s all that matters. Not how long it takes.

You know my feelings regarding covid restrictions, so I won’t bring those up.
And as you know, I no longer see my mum now, because I been pushed away for too long now and now I need to focus on me. Any presents/cards I will hand deliver to main entrance of the care home. I won’t be back unless she asks for me.
I want to write letters to my mum maybe every 2 to 3 months instead. But at the moment I can’t do that.
As for deputyship role, things are being escalated now to find another deputy to put in my place after those who answer to found after personally having someone to visit her and assess her for themselves, find she still requires a deputy due to her fluctuating mental capacity. This is no surprise to me obviously.

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InvisiblyMe May 9, 2022 - 10:51 pm

Thank you, Liz ???? I know things like blog hosting or the legal case are very much “first world problems”, but it can all pile up and be too much, not to mention immensely frustrating. And thank you for your kindness about my mum – I’ll certainly reiterate the whole ‘slow and steady’ approach. I said at first not to be disheartened if things don’t improve for some time but I know it gets her down so she could certainly do with hearing it more often. It doesn’t matter how long it takes.

I’ve seen more talk about the restrictions of late because there is, quite rightly, outrage over the fact that the country seems to be going back to “normal” thanks to Boris’ stupidity and the government couldn’t care less, and yet loved ones are still isolated in hospitals and care homes, still split up from seeing their families. There has always been a safer way to allow visitations, even a bloody hazmat suit would be preferable to inhumane isolation like this. I hear you, Liz.

I hope you can take this time for yourself to look after yourself and bring in a little more joy, but I know it’ll be hard to do until the deputyship transfer has been completed. I hope it’s not much longer now, I’ll keep my fingers crossed ???? xxxx

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Despite Pain May 7, 2022 - 6:44 pm

Oh, Caz….I am so sorry that things went so badly with Lyrical. I am shocked because I have had such a good experience. I really am so sorry about this. I hope your new host is better. With all your health issues, the last thing you needed was this.

I did miss you and hoped you were okay.

Now you have another issue that nobody seems to be able to diagnose. Hmm…sending you for a scan might have given some answers, but no, they don’t do that. And narcolepsy. I’ll need to read more about that. I’m like you as I was under the impression it just made people fall asleep.

Well done for trying to help your Mum do some exercise. I thought about my Mum while I was reading that. My Mum used to exercise with Mad Lizzie from breakfast television (probably before your time!) I used to wake up hearing thump, thump, thump…my Mum doing starjumps with Lizzie!!

Nothing much happening here….oh, apart from the great excitement of waiting for my super-duper fast broadband. Next Friday. Not long to go now.

Take care of yourself, Caz. Love to your Mum too.
Liz x

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InvisiblyMe May 10, 2022 - 4:37 pm

Aww no, Liz, nothing to be sorry for at all! This is the thing, a lot of folks have good experiences with Lyrical. It boggles my mind after my experience but I wonder if it’s just if the migration is smooth, you’ll be okay, but if Lyrical mess up your migration, it’ll be a nightmare. So it could be pot luck. I couldn’t quite believe how quickly it went downhill with them mean pretty nasty and making threats to give my money away. Really, really strange and unpleasant.

The narcolepsy thing made me realise just how very little I knew about it. There are plenty of conditions, come to think of it, where the general social understandings are either incorrect or just really insufficient. Like EDS meaning you have to have stretchy skin. We know better with most conditions now because of our own experiences and because of all the awesome bloggers we know online raising awareness about what they go through, but narcolepsy was one I hadn’t learned more about before.

Hahah I love that your mum used to exercise along with Mad Lizzie in the mornings! I’m sad I was only a baby in the late 80s and missed what I think might have been one of the best eras to live in. That wild hair, neon earrings and lycra!

So your broadband is this upcoming Friday, right? I hate to say it, but it’s Friday 13th. Are you sure they’re not pulling your leg, making you think you can get super fast internet in your neck of the woods? ???? Only joking – I hope it all goes well because it’ll certainly be a game-changer in your household! I’m amazed you’ve had to go for so long without it when we take easy internet access so for granted as a necessity now. I hope you have celebratory plans for the weekend – maybe a day full of streaming TV online!

Lots of love you to too, Liz. Give Kip a cuddle from me. xxxx

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Smelly Socks and Garden Peas May 7, 2022 - 8:17 pm

Ah Caz I’m so sorry you’re having a crappy time. Sounds like one frustration on top of another, I wish I could make just one of them a little bit better.
I’m glad to hear your mum is recovering though.

On the sleeping thing, I was exactly like that when I had post-viral fatigue when I was a teenager. I couldn’t wake up, my mum would shake me and I was half aware of it but couldn’t drag myself into consciousness. Its actually validating to hear someone else describe that feeling, I don’t know anyone else who’s ever related to it. I guess it just waned and went away eventually for me. Sorry I can’t suggest a fix.

Sending hugs, always xxx

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Ned Hamson May 7, 2022 - 8:42 pm

Sorry to hear that problems have been piling on you. Air hugs and good wishes that Spring brings some relief. Too sad that those who should be helping are not or are dodging responsibilities.

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Bo May 7, 2022 - 9:29 pm

Oh dear, I’m so sorry…Sending more good vibes.

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Greg Dennison May 8, 2022 - 12:07 am

I’m sorry you’re dealing with all that… hang in there!

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Carolyn Page May 8, 2022 - 1:57 am

Hi Caz,
I’ve been checking in to see if you’d posted and I just didn’t get the email.
Not good to read about all that stuff on your plate, but, good to know you can, at least, write about it!!!
Narcolepsy! Well, I was the same as you. Didn’t know ’bout all those symptoms. Be good to get that checked out – even if you do have to wait some more. So, what’s new? 🙂
Loving that your mum is able, at least, to get back more strength and mobility. Here’s hoping the same for you too.
Lots of hugs and kisses
xoxoxo

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Ogden May 8, 2022 - 1:59 am

So, its all good huh? Oh dear, so sorry to hear about so many difficulties for you both, I hope things improver markedly as the weather has to do (sooner of later) Always a good read Caz. – do be well! XX

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Peggy Bright May 8, 2022 - 10:38 am

Wow, this is a bumper post. Hope everything calms down for you.

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James Viscosi May 8, 2022 - 3:50 pm

To call that a rough patch would be like calling Olympus Mons a little volcano! I’m glad you are still here with your blog at the end of it, but man, if you’re not getting jerked around by the medical community, you’re getting jerked around by the technical community. Open question which one is better at it … About the mixing and matching vaccines, that’s what we did, Pfizer for the original and Moderna for the boosters. From what I’ve ready you get a stronger response that way, so I’m fine with it. Of course any vaccination is better than none!

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Rachel May 8, 2022 - 4:53 pm

Sorry to see you’re having such a crappy time.
Sending you hugs and best wishes.

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Blanca May 8, 2022 - 6:04 pm

Oh, Caz… I’m so sorry you’re having to deal with all these issues. I really hope you get better soon from your health problems. It must be really frustrating to feel so unwell and not finding much help in the healthcare system. I hope you find a way to get your health back in track. I also hope your problems with the blog end up soon and you get a better experience with your new blog host. Glad to hear your mum is feeling better and is improving from her heart issues. Thank you so much for this update and I really hope next time you write a post things are better on your side.

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Jo May 8, 2022 - 7:29 pm

Hope things pick up soon. On the blog front you could always just use the free WordPress oltion. I know you’d lose your domain name but you have such a huge following on WP I don’t think it would affect what you do at all. Good luck x

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The Oceanside Animals May 8, 2022 - 9:09 pm

Lulu: “Wow wow wow just wow! I am going to listen to your Mum and never complain about going to the vet again!”
Charlee: “Really? Never?”
Lulu: “Well okay I probably will.”
Java Bean: “What is the vet?”
Chaplin: “Oh don’t worry, you’ll find out.”

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George Rector May 8, 2022 - 10:31 pm

Oh, Caz, please know that Sandy and I feel your pain and that we care. Why is it that when things start to go wrong, they seem to spiral downwards? I hope things start to go better for both you and your mum. ????

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Lindsay May 8, 2022 - 10:51 pm

Oh, Caz, I’m so sorry things are not going better for you. That sounds like awful pain.
I think, like most illnesses, there’s much more to narcolepsy than we hear about. I have a friend who has it. She doesn’t randomly fall asleep, but has the other symptoms you mentioned. It’s perfectly understandable that you wouldn’t think you had it – most of what we hear about narcolepsy comes from popular media, which turns it into a punchline.

I have been thinking about you and your mum and hope she is doing okay.

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Cheryl Batavia May 9, 2022 - 12:17 am

Caz, what a nightmare you have been living in! The tech problems are so, so frustrating, and the health problems are unimaginable. Take care of yourself and your mother. I hope things get easier for you.

I will be getting my second covid booster in about a week. When I was in the grocery store a couple of days ago, I think I was the only one wearing a mask. Florida has rising numbers, so that does concern me.

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Jenny May 9, 2022 - 10:18 am

Oh my goodness Caz, you seem to be in such a rough spot :(. I am sorry you are struggling with all of these issues. Please know that I don’t need responses on my blog/insta/twitter etc, the most important thing is that you are taking the time you need. Today is Monday – I really hope that your pain has gone or least lessened and if not you are taken seriously and get the right support for once! Lots of (gentle) hugs to you. I am pleased your Mum has been feeling a bit better too. Hosting issues can be such a pain, I am with Bluehost and haven’t had a problem so far but I do find the website/dashboard confusing (admittedly it doesn’t take much to confuse me!). Please don’t stop blogging, even if you can’t always manage it, we are still here and love hearing from you and having you as an integral part of the chronic illness online community. Lots of love! xxx

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Animalcouriers May 9, 2022 - 2:59 pm

Oh dear, you are have a horrid time. If you continue to have problems, you may want to consider SiteGround. Not sure how much you’re paying but their transfers are free and almost instantaneous and the helpdesk couldn’t be better.

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Michele Anderson May 12, 2022 - 1:30 am

So sorry Caz you’ve been going through so much. I sure hope things get better for you and your mom very soon. Many hugs.

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Hope found in M.E. May 12, 2022 - 12:34 pm

Oh Caz, I have been wondering where you are. I’m so sorry you’re having all these hassles all at once. Not that you want any of them I’m sure.

With my blog I stick with WP as I know my cogs wouldn’t cope with any transfer issues. I hope your current provider works well for you.

And what is it with B12s being cancelled all over the place? It’s a badly thought out cost saving, impacting peoples lives. After arguing with my GP, I then had to infer it impacting my mental health to community nursing as the reason for the inj, no acceptance that it actually helps keep the MEcfs stable. Bizarre.

And Covid. I just don’t know. Our next door neighbours had it. I stayed indoors & shut the kitchen window if they were in the garden, sitting right next to our garden fence coughing. Thank you very much!! Thankfully we didn’t catch it.

As ever, I am in awe of your grit, perseverence & determination when your health throws you yet another curve ball. Hang in their, Caz. You are amazing with how you cope with such an awful amount of being dismissed by medics. Its just so wrong the attitudes you have to deal with. Take a blogging break while you sort your surgery needs out. We’ll all still be here. And I agree, I love the blogging community. It’s one of the few sane places online.
Love & hugs from here. Penny xxx

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Hope found in M.E. May 12, 2022 - 12:41 pm

…oh and I can relate to the sleep issues. And try supine yoga instead of a workout. Look up Angela Stevens Yoga & Fiona Agombar. Xxx

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SS May 15, 2022 - 11:37 pm

I was wondering how you were doing and I know persevering is exhausting but I’m glad you’re doing it. It sucks to deal with unprofessional people that don’t confess up to their crimes. I find shaming on social media, immensely satisfying, whether or not I get a response, it’s just healing. Bad dreams are the reason I hate bedtimes. You’re doing the best you can and then some so bear that in mind, instead of feeling defeated and remember lots of people are in your corner 🙂

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disturbedByVoices June 7, 2022 - 5:36 pm

Sorry to hear about your health issues. We often hear how great the NHS is here in America, so disappointing that they were clueless and more so, willing to go forward without doing the requisite scans (they already own the fkn machines??) to be sure you were safe just to save $$$ by potentially putting your life in danger. Sincerely hope you and your Mom are doing better now or in the very near future. ????????

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