Home My Journey Mini Me Update [21/05/2021]

Mini Me Update [21/05/2021]

by InvisiblyMe
A white and magenta stripe background. A large white circle is in the middle with a turquoise outline. In the middle are turquoise and magenta flower icons and the title: Mini me update.

I’ve not done any personal updates in a while & I’ve typically kept posts more neutral, too. Part of the reason is because everything has been rather full-on and I’m finding myself rather overwhelmed. I also don’t want to bring others down with too much negativity. That said, I also think it’s important to be honest and to show the reality of life, especially around how it’s ‘okay to not be okay’.

There’s nothing too exciting in this post. I’m afraid I’ve been too busy to go skydiving & too tired to travel the world!

Mini Me Update Highlights

This mini me update got a little long as I’ve struggled to think clearly so I’ve been adding incrementally to for nearly two weeks. Only read on if you need something to send you off to sleep, you’ve been warned! If you don’t want to snooze, these are the main points summed up:

  • We’ve all been Covid-vaccine jabbered.
  • I begged & managed to get an IV iron infusion.
  • Never-ending migraines are making me super grumpy.
  • My neck, shoulders & back are buggered from being propped up in bed since my first 2015 surgery. I might need to find a working body part to sell to pay for ongoing physio.
  • My beautiful mama had a birthday. I bought a dog-shaped cake & a dangerous swingball set. We’re waiting on some test results for my mum, so it’s a worrying time.
  • We went into the woods. We got lost. No surprises there.
  • Trolls & bullies suck.
  • Check out the very cool To Better Days range of pain patches.
  • I’m feeling ridiculously overwhelmed. I’m sick and tired of being sick and tired.
  • My small bowel continues to dance & twist even though I’ve asked it nicely to stop. Go figure.

Pandemic Ponderings

I’m very pleased to say my parents had their second dose recently, and I’ve also recently had mine. I’m feeling very grateful. My heart hurts for the countries without adequate access to vaccines or healthcare provisions. The events throughout the pandemic are highlighting a lot of inequalities, as well as a lot of unpleasantness within governments. With everything this pandemic has involved, it’s unsurprising that so many have found their stress levels rocket.

In England, lockdown is already changing and evolving, with some things gradually re-opening. I find I’m full of trepidation and worry. There still needs to be caution as we move ahead, and as much as I think tolerance and understanding is needed when we all have our own opinions, I’ll never, ever agree with those who think their own egotistical indulgences are more valuable than the lives of others. With this, I mean comments about how the elderly and sick should just be holed up at home so everyone else can live their lives, or how it doesn’t matter if some ‘weaker’ folks die because that’s just life, and so on.

I’ve ran the gamut of emotions during this past year and a bit, so I won’t get into it much here as the situation is so complex that I’ll end up writing a tome. I’d like to say I have hope and that we can all hold on to a little hope moving forward. This pandemic has to end and hopefully – hopefully – the vaccines are a way through these dark days and back to some semblance of normality without fear and without as much risk to life.

When Begging Pays Off : IV Infusion

After a bit of begging, I’ve finally had my IV iron infusion! ???? I had to push for treatment with my GP practice, despite my ferritin being very low and me being symptomatic, ie. beyond ME/CFS exhausted, incredibly weak, heart palpitations and very out of breath, etc.

The mornings have been particularly frustrating because for countless months I couldn’t get up – this wasn’t just being lazy or tired, I literally couldn’t ‘wake’ up consciously or physically any morning. The house could be on fire and I wouldn’t be aware or capable of doing anything. It was just different to chronic fatigue and it felt all wrong, but I had no idea that could be related to iron, though some is also related to the breathing problems I’ve been having and the squashed lungs. So much time lost.

The original appointment was weeks away so I called to check whether there was a last-minute cancellation I could get into, and thankfully there was. The nurse was lovely & incredibly kind, which makes all the difference. I wish more medical staff were like her.

A few weeks later and I was feeling gradually more conscious in the mornings, hurrah! It’s slow going but I think it’s getting there, though I’ve had so many set backs with other problems, especially back to back migraines, that it’s hard to tell. Breathlessness going down a little. So I think there’s a little improvement, which is nice to have considering everything else is getting worse. The problem will be trying to get more regular infusions because I needed this over 12 months ago when I first started struggling with the symptoms. It’s an uphill battle with everything and it’s exhausting.

In the face of Covid19 delays and doctors reducing the treatments given on the NHS, keep trying. Persevere. Your health is worth fighting for. Sometimes it even pays off. Never give up.

A collage of two photos I took during my iron infusion. To the left is my arm resting on a pillow with a hygiene sheet underneath. I'm wearing a blue glove and have an IV cannula in my arm. On the right is a very comfortable padded blue chair that patients sit in for the infusion, and the IV stand next to it.

Migraine Hell

I’m still getting regular migraines, taking out on average 5 days each week. It’s starting to feel rather soul-destroying. Then I get the odd days that are extra bizarre and horrible, though thankfully I often can’t remember too much about them afterwards. On such days I spend the whole day in bed, totally out of it, only moving when throwing up. The last time this happened recently was excruciating being in bed that long because of the nerve damage affecting my back and hips, but there’s nothing I can do about it.

When it gets like that there’s often a part of me that’s still conscious enough to wonder whether I’d make it through and out the other side. I feel guilty for my parents worrying about me, too.

On these ‘extra bad days’, I don’t even have the chance or ability to stress about having got zilch done at the time, but then a day later I realise just how far behind I am. It’s not realistic to have so much to do when living this like. It just causes a continual cycle of overwhelm, stress, regret, guilt and more stress.

Trying to keep up being self-employed earning peanuts despite working my bum off in the small window of time I get each week has been challenging to say the least and I don’t think I can keep going like this. I hate, hate, having to admit that.

But I always find that after a time like this, when things feel even worse than usual, that I get a bit more perspective. It just doesn’t last very long.

We should probably all be a little kinder to ourselves, though it’s easier to give such advice than practice it. Take each moment at a time. Be honest with ourselves about what we can and cannot do. Celebrate the small wins. Realise that just getting through when we think we might not have made it is all we can do sometimes.

Pricey Physio : The Perils Of Years Propped Up In Bed

This isn’t something I’ve really mentioned on here before but for the last 12-24 months I’ve had problems that were hard to describe. I’m not sure I’ll be able to explain it adequately even now that I know what the issue is. I’ve had a sense of heaviness and hollowness under my arms and down the side of my chest, my breathing has been restricted as though my lungs are being pushing up from below and squashed, and my shoulders had been permanently hitched up.

The knock-on effect has been more dramatic, affecting my breathing at night, which affects my sleep and morning migraines and so on. My breathing at night has been incredibly shallow, which I believe is what started leading to the addition of morning migraines as well as vivid, memorable dreams every single damn night since August 2019. That can’t be normal!

Long, long story short. After being told I’d need to wait a few more months to see a physio, and that they don’t do hands on therapy, I got desperate and called a sports physiotherapist and massage clinic in my area. I got in for an appointment two days later.

I was pretty shocked by how I looked in my strappy top in the large physio room mirror. It was the first time I’d really seen myself in a while (without 6 layers on). My shoulders were nearly up to my ears, my collarbone was at a 45 degree angle, the muscles in my neck/shoulders had bunched up and I looked ridiculous. I wish I’d taken a photo as not even I could quite believe it. The only photo I have is a couple of weeks later, where my shoulders have already started to come down but are still popping out a bit.

A photo of me in a strappy top, hair tied back, standing in front of the skull canvas in my room. You can just see my shoulders, which are just a little hitched up.
Looking rough. A few weeks after physio started & my shoulders are already going down but they’re highly unstable.

Extra long story short : My shoulders experience subluxation (partial dislocation) upon lifting my arms. My neck and shoulder joints aren’t correctly supported because of muscles in my neck and mid-upper back becoming too weak. Around 6 years of being bed bound despite moving, just because I can’t sit normally in a regular chair anymore since my first 2015 surgery, has led to some muscles becoming too weak.

As such, different muscles have taken on the work instead (like the tapezius) and pulled the wrong muscles, like those under my ribs, into different positions.

These issues have led to clavicle outlet syndrome, where nerves, veins and muscles are trapped around the clavicle. All these issues are what led to the heaviness and hollowness under my arms and down my chest, my shoulders ‘popping up’ and not being able to sit in place properly, the shoulder and neck instability, problems with my arms and hands, the muscles below my ribs abnormally contracting and crushing my lungs so I can’t breathe deeply.

While I’d hoped for a quick fix, it’s sadly something that will take several weeks or even months to see improvement. He’s recommended heat therapy, so I’ve bought a neck/shoulder wrap that goes in the microwave, along with different exercises at each session to open up the muscles. Then it’ll be exercises to strengthen the correct muscles.

It has been my private physio’s hands-on massage that has resulted in some good improvements – this has helped to ‘unlock’ my shoulders and release some of the muscles knotted at the top, so while such improvement is short-lived, it’s pivotal to being able to get on with re-training the other muscles. According to the hospital’s physio department, an NHS physiotherapist wouldn’t do any hands on physiotherapy massage or muscle manipulation so I would have had to go private anyway. Go figure.

While things seemed to be going in the right direction, albeit painfully slowly, they slipped back down again after too much time being unwell, too much time not looking after myself, missed physio sessions because of bowel twists etc. One step forward, two steps back.

The problem going private is, perhaps quite obviously, the cost. If we could all afford private care, I imagine more would seek it. It’s costing hundreds of pounds already and I’ve got a long way to go. It’s not pretty. All because of the surgery I had in 2015 and the inability to sit in a chair. To think, I had good posture before all of this.

A word of warning to those who also have to live in their bed, work in bed, etc – Keep yourself well propped up, stretch out your shoulders, support your head and arms if you can, elevate your laptop so you’re not always looking down, move as much as possible, keep your shoulders pulled down, work your back muscles. I did the pillow propping and laptop elevation, yet this still happened to me. The simple fact of being in bed rather than in a chair means you’re not working the same muscles, and the knock-on effects can be pretty dramatic. Any signs of a problem like I had, please speak to a doctor.

My Mama’s Birthday

My beautiful, wonderful mama has turned 73 in April! I can’t quite get my head around that number because she doesn’t look her age (I’m biased but I still don’t think she does) and I struggle to grasp where all the years have gone.

It breaks my heart at times that she’s lost over a year now being at home during the pandemic, which is a situation so many have faced and has been in the name of protecting lives. I know there’s time for us to make up for missed coffees and chats in the car while I drive us around, and perhaps the odd day trip. I’ve not thought about these things yet & still won’t because I don’t want to get my hopes up. I still can’t imagine ‘normality’ being around the corner.

A bird's eye photo of the dining table on which are the presents for my mum's birthday and cards. Some are wrapped in rainbow koala paper, and others are wrapped in colourful dinosaur paper.
A collage of two photos. To the left is the sausage dog cake for my mum's birthday with four purple and white candles in it. To the right is her card, a Tatty Teddy design with a photo of me and my mum in the middle.

Among the gifts I bought, I also got a tennis ball swing set for the garden. That’s right, we’re walking on the wild side now, where danger lies in every swing of the ball as it comes zooming towards your face! It’s surprisingly difficult to actually play – has anyone tried swingball?

I had to take my mum to the GP this morning with a health issue of her own. They’re running tests and we’re waiting for results, so it’s a worrying time. I’m finding it very difficult to think of anything else now. I’m in practical, keep busy mode to stave off the worry.

Woodland Walks

I drove my folks out for a walk after hunting down a hidden woodland gem (thank you, Google!) This was actually over a month ago now but it was absolutely beautiful and there were very few people walking the trails. Great for Covid safety… bad for when you get lost!

Admittedly it was a bit of a steep incline going up & then we got a wee bit lost, so it was a longer walk than I’d intended! I doubled up on painkillers beforehand and afterwards but it was nowhere near enough; I secretly cried with pain when I got home, but the extra agony was definitely worth it. With illness & pain, we have to weigh up everything we do, and on occasion the payback that can last for days after is worth it. 

There’s something very grounding & refreshing about being out in nature.  My folks have been shielding since last March so they were glad for another little walk, even if they did go stir crazy with my constant Covid precautions, Dettol wipes & hand sanitizer! I’m sure we’ll all welcome the day where it’s safe to go out & when there’s no stress of making everything ‘Covid secure’. 

Trolls & Bullies

I’ll keep this short. I’ve now had two instances of getting harrassed, for lack of a better word, by clearly bored individuals on Twitter. I’d not really experienced trolling before quite like this and I must say, it’s pretty horrible. I’m one of those people that now go “nah, I’m not bothered about this nonsense or what they say”, then spend the day fretting and upset and in tears. There’s a whole other story to tell more locally about being abused but I’ll save that one for another time!

Basically, such instances of trolling made question whether it’s worth it. Should we still speak up for ourselves and stand up for others when bullies might shout us down? Should we still argue for the things we believe in and raise awareness for the things we’re passionate about if trolls might harass us for days on end? Is it worth it?

Yes. I still think that it is. Never let the bullies or trolls or just plain nasty idiots keep you quiet. That’s what they want, because they’re intolerant to the thoughts and views of others. Maybe they also want a fight because they’re bored. Maybe they simply want to bring others down to feel better about themselves.

I was happy in my chronic illness bubble online, where most people have been absolutely incredible. There will always be the odd duck who’s not so nice, but on the whole most people are supportive of each other on blogs and social media. Outside of that bubble it can be vicious, and if you’re feeling vulnerable or not as quick-witted as you used to be (fibro fog, anyone?), then it can feel like you’re caught up in a whirlwind.

Don’t stand for bullies and trolls. And don’t let them keep you down. They’re bored with nothing better to do than make others feel like crap so they can feel superior, which just makes them pathetic. You are far tougher than they’ll ever be.

To Brighter Days

To my surprise, I was featured in a list of chronic illness bloggers by To Better Days! They also very kindly sent a free trial pack of their pain patches so I could try them for myself. I’ve read up on their product and I’ve been very curious as I’d not come across anything quite like these before.

A photo of the To Better Days trial pack with the six strips and 3 large patches laid out on my duvet cover (white with colourful swallows design).

“The unique, patented combination of dextrose and vitamin D work together to soothe discomfort and also treat the damaged nerve, reducing the pain in the affected area over time.”

The To Better Days patches can be used for a variety of conditions and pain types, which makes them more versatile. I have a lot of pain from nerve damage, but I also have fibro pain, joint pain and muscle pain. Having a simple patch that sticks onto your skin, no mess and no fuss, is a convenient option for your pain management toll box.

Such things work differently for everyone so it’s a case of not knowing whether they’ll help until or until you try them. This is why they offer a Trial Pack on the website so you can buy a smaller selection of different size patches and get a feel for whether they work for you.

You can check out their 8 Women Bloggers You Need To Follow post here.

Overwhelm

Unfortunately, the woodland outing was one small slice of a single afternoon and that’s been about it as far as uplifting moments go. While I’m doing all I can in other respects, I feel incredibly guilty for not doing more to get my folks out of the house, or to spend time together doing something enjoyable. I’ve felt ridiculously overwhelmed and I realise I’ve not been looking after myself either. Then there are the medical appointments, the legal case, the general junk and everything else. When you keep going that way, you find eventually that something’s got to give. But bloody hell, it’s hard having to admit you can’t manage when you’re only living an already much reduced version of your life anyway.

I’m just finding that the window of time I have in any given day or week is getting smaller and smaller, with health problems sucking away the time and the remainder needing to be for groceries, work etc. I’ve had so many medical appointments that I’ve lost track. Stress and anxiety levels have gone out of the stratosphere and before you know it another year has gone by without you.

If you’re also feeling like this, please know that you’re not alone. It’s hard to make time when you just don’t have it, to admit you’re struggling or to even see any other option other than to keep going as you are. But it’s okay to admit you’re not okay, and you don’t have to go it alone. If you just need someone to talk to, please consider reaching out.

Stoma Shenanigans Update

I’ve had ongoing problems with my insides dancing. This apparently happens because of adhesions after numerous bowel surgeries, so then my insides get stuck together and twisted around. When it twists on itself it can be agony but it’s also dangerous as it obstructs the stoma.

At the start of may I had a week-long small bowel twist that fortunately wasn’t as serious as usual so I’d been able to avoid A&E. Just as well really as I refused to go back after some horrible experiences in December.

I had an in-person appointment in May to see the same colorectal surgeon who did my emergency operation in 2019. It was not what I was expecting, at all.

Because of the ongoing problems, he’s suggested an open procedure like something you’d do in the Operation game, hoping to don’t set off the buzzing alarm : A large cut down the middle of my tummy. He’ll pull the insides out, remove the adhesions, then push everything back in again like a jigsaw puzzle.

I said I’d think about it. Smiled politely. Then bolted.

An image from Amazon of the Operation game with a man in a hospital bed, with a wire and tweezers to remove body parts without setting off a buzzer.
A black scroll divider.

How’re you all holding up at the moment? Are you finding hopes buoyed with the Covid vaccines or are you still concerned about safety while infections are still prolific?

Please take care of yourselves and have a restful weekend if you can.

Caz  ♥

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70 comments

Kymber May 21, 2021 - 5:30 pm

Hey, Caz, thank you for this update. I’m so sorry for all the things you have to deal with. My thoughts and prayers are with you each and every day. I wish I could do more. xoxoxo

I love the dog cake! It’s so cute!

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InvisiblyMe May 21, 2021 - 10:40 pm

Aw no, you don’t need to do anything Kymber, don’t worry about me. Honestly. I feel like I’ve just emptied out a lot of what’s been happening & going through my head and I realise it probably all seems very negative and woe-is-me, which wasn’t my intention. I’m glad to have you as a friend in the blogosphere & I know I’ll always have your stories to read to cheer me up, too! I hope you’re keeping as well as possible lovely. Have a restful weekend ????????

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ashleyleia May 21, 2021 - 5:36 pm

Oh for fuck’s sake, that surgeon, before he does anything else, needs to surgically remove his head from where he lost it up his ass.

I’m glad you got the iron infusion, and your doctor is a poopy-head for dragging his heels. Less sick patients are easy patients!

If only trolls and bullies would get migraines 5/7 days and have their intestines dancing while a surgeon wants to pull them out entirely. My approach is generally don’t engage and delete/block. Convincing an asshole to stop being an asshole wouldn’t be successful into Dr. Asshole surgically cut a new asshole for the troll.

I wonder if Akismet will mark this as spam for too much potty mouth…

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InvisiblyMe May 21, 2021 - 10:47 pm

I’ll make the recommendation for head-from-arse-removal ????

It’s pretty sick how healthcare is run around the world, either denying people what they need or bankrupting them. Who ever gave them the right – the big decision makers who likely haven’t a clue about what it’s like to experience chronic illness, pompous doctors, medication deities – to choose who gets help and who doesn’t? Sick and wrong.

You’re right about trolls and bullies. Don’t engage is a sensible way forward. I suppose sometimes I just get angry, and I don’t want to back down. Sometimes I genuinely think maybe I can make someone see another perspective other than the one up their own arse, but no. Once an asshole, likely always an asshole.

Akismet can be an asshole when it wants to be so it would have been too hypocritical to mark your comment as spam.

Thank you for the great comment, Ashley. I really appreciate it! xx

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Liz May 21, 2021 - 6:05 pm

My mum is 78. She will be 79 in December time. This age number is something that doesn’t sink in because of mum not looking her age. Although, as you know, my mum’s health is deteriating further and after seeing her today, it was a shock.

I can remember when you tweeted you got lost on your walk. I can remember me and my mum doing that many years ago, when I was after walking a particular route.
Not the first time me and mum have got lost on a walk.

Sorry you have experienced trolls. I have experienced nasty people directly, or indirectly. Insensitive and uncaring comments made towards those like myself who have family in care homes, thinking its ok to say what they say when they are not in our shoes and knowing the full circumstances. Making out we are uncaring, when it’s total opposite.
The other is I have respected those who choise not to have the jab, but unfortunately, some did not respect my choice. So I left the group and another like it and blocked further comment notifications from my comment I left, that kicked it off. I have enough going on, so certainly not having that on top.

Its not surprising when you have had your fatigue days, or weeks, that you feel you are behind on things. You can only do what you can.

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InvisiblyMe May 21, 2021 - 11:14 pm

I’m sorry, Liz, that’s got to be so hard to deal with. From my experience with ageing parents, I get the pain and horrible feeling when reality sinks in and suddenly life feels very precious but fragile. I’m glad you have some confidence in your mum’s care at the home but it’s awful she’s deteriorated recently. I’ll keep my fingers crossed something can start to improve gradually for her.

Getting lost on walks should be an extreme sport in itself I think.

Ugh, I do wonder sometimes whether these trolls and bullies online are shooting their mouths off because of feeling untouchable behind a keyboard. Some are just assholes, others are ignorant. I suppose we just have to be glad we’re not them, and that we don’t have to live with them! So some people in this group were vile just because you had the jab? Bloody morons. I feel bad then because I consider myself quite tolerant and I think tolerance is so important, yet I find myself increasingly intolerant of a lot of things and a lot of people like this! There’s no excuse for haranguing another person just to knock them down so they can feel better about themselves.

Thank you for the comment, lovely. You too have had a heck of a lot on your plate. I can’t believe it’s the weekend again already. Time is disappearing. I hope you have a DVD or two to watch that can distract you a little and that you have some time to unwind and look after yourself ???? x

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Sam May 21, 2021 - 7:38 pm

Oh Caz, I’m so sorry you are going through so much. Ignore those awful trolls. We are all so blessed to have you in the chronic illness community. You give so much of yourself and your care and support of others (including me) is absolutely priceless.

Congrats on the “Better Days” feature. So deserved!!

I can relate so much when you talk about “the window of time getting smaller and smaller”. I was only thinking the same yesterday. The “chronic illness daily management routine” alone, is taking up more and more of my time and I’m struggling to find the time to focus on other important areas of my life.

Thank you for sharing your update. Sending lots of love and lots of thanks for you being the wonderful you ❤????

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Invisibly Me May 23, 2021 - 4:31 pm

Aww you are far too kind, Sam. I don’t see myself that way so it’s strange to read it. I’m sorry you know what the ever-narrowing window of time is like. It’s ridiculously frustrating, isn’t it? Of course then there’s not just being too poorly, there’s all the illness management side of things like you said. Very good point. And medical appointments, which just sucks out a bit more time. I hope you can still squeeze in and make more space for the important things in your life you want to do and spend time on (not necessarily cleaning windows ????). Sending lots of love right back at’cha xxxx

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Anne Fraser @theplatinumline.blog May 21, 2021 - 8:18 pm

Thanks for the update. It is shocking that you have to pay for your physiotherapy when it is something you clearly need to function at all. I hope the warmer weather will help when we get it.

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Invisibly Me May 23, 2021 - 4:40 pm

Thanks, Anne. I’m definitely looking forward to the warmer weather. My body and my joints don’t deal well with the cold. I seem to freeze even in mild weather these days. It’s a shame about the physio and it seems a bit ludicrous that you could be waiting months on end for an appointment only to find that hands on physical therapy isn’t offered by the NHS physiotherapists, that they just talk you through movements. I hope you’re having a restful Sunday lovely xx

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Carolyn Page May 21, 2021 - 8:29 pm

Hey Caz, thanks for the update! How the dickens you stay ‘on-track’ at all is a testament to your strength and tenacity.

Sending hugs and kisses
xoxoxo

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Smelly Socks and Garden Peas May 21, 2021 - 9:11 pm

Oh Caz I just want to give you a great big hug. I wish I could help with even one of the struggles you face or have faced recently. You’re amazingly strong to be able to share your experiences so honestly. Your description of your iron deficiency symptoms speak strongly to me of how I felt when I was diagnosed with post viral fatigue aged 14. I could not drag myself out of sleep and into consciousness in the mornings for almost 2 years. I was vegetarian at the time but I wonder if there wasn’t an iron lack component to my fatigue at that time too.

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Invisibly Me May 23, 2021 - 4:43 pm

Naww thank you lovely! I really appreciate your lovely comment ???? I hate writing posts where I feel like I’m just whingeing and moaning, but at the same time I think it’s important to share such things because we know we’re not the only ones finding things tough. I’m sorry for the awful time you went through in your teens – 2 years to put up with that is a heck of a long time. Was there a treatment that eventually helped or did it gradually ease back to ‘normal’ after those years? I couldn’t find any information online at all on what I’d experienced with literally not being able to wake up physically or consciously in the mornings so it’s really interesting you experienced this too. While your iron should really have been checked at the time, it’s quite likely it wasn’t and any level of deficiency there wouldn’t have helped matters for you. I hope you never have to go through anything like that again! xx

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Sandee May 21, 2021 - 10:51 pm

I wish I could wave a wand and make all your issues and your moms issues disappear forever.

Big healing hugs honey. ♥

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Anjali May 22, 2021 - 1:36 am

I am sorry Caz for all this.
Belated Happy Birthday to your Mom, age is just no so don’t think much…. your Mom is still young.
Love and hugs to you with lot’s of Positive vibes. Anjali

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Invisibly Me May 23, 2021 - 4:45 pm

You’re right, age is just a number. Doesn’t really mean a lot! Thanks, Anjali – I hope you’re keeping as well as possible ???? xx

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refoexac May 22, 2021 - 2:05 am

Nice to hear from you again ! It’s amazing how you manage to look so adorable despite all the horror. You always look very good ! You are a beautiful woman, maybe it is less the faults in your health that cannot be seen, pain cannot be seen, but your personality shines, this being inside you that is strong and eternal and remains forever ! Like an elf. I hope you see it that way too, that this grueling fight is not in vain, it might just be a first draft of a longer life that comes later and with a lighter, flawless body that can float wherever it wants and that has no limits, like here on earth. This isn’t the end, it’s just the beginning. Like a birth ! Births are painful, but there will be a life and it is already like an angel called Invisibly-me ! ???? ♥️♥️♥️

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Invisibly Me May 24, 2021 - 9:43 am

Aww hahah like an elf? I like that! I really don’t see whatever you’re seeing, but your lovely comment made me smile. I do like the idea of the later, where you have a flawless healthy body that has no limits. That sounds very appealing. Thank you for such a sweet, kind comment, I really appreciate it. I hope you have a lovely week ahead! ????

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Brendan Birth May 22, 2021 - 4:05 am

Yay! I’m glad you’re vaccinated! I’m also sorry you’ve had to deal with trolls, but it sounds like you’ve handled it well insofar as you haven’t let them silence you.

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Invisibly Me May 24, 2021 - 9:47 am

It’s hard to know what to do with certain trolls to be honest. I think if they want to batter you down and make you quit, then doing just the opposite is probably the way to go ???? Take good care of yourself & I hope the week ahead is a good one for you!

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Greg Dennison May 22, 2021 - 7:52 am

Hang in there!

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InvisiblyMe May 24, 2021 - 9:49 am

Hope you’re doing okay too & that the week ahead treats you well!

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SpookyMrsGreen May 22, 2021 - 10:11 am

Hi Caz, what a crazy few weeks you have had. The suggested surgery sounds awful, I hope you can find a way through the situation.

I’m having lots of stress with my eye condition and trying to get responses from my GP for follow-up checks after my last hospital visit. Once again I am waiting because nobody recognises my condition and they all decide that I’m not a priority. Now my mental health is deteriorating as a result but I feel completely alone and can’t talk to my registered health professionals.

Anyway, we keep on going and I trust that you will enjoy some good stuff amongst the chaos xxx

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InvisiblyMe May 24, 2021 - 2:10 pm

Oh Catherine, I’m so sorry. There I was considering myself lucky to have found some new cleansers for the gunk I get as a result of dry eyes (Sjogrens) and blocked ducts. It’s awful you’re left without the help you need. I often wonder what it would be like if patients could access the care they need themselves, be it for diagnostics or treatment. The waiting can lead to so much deterioration of physical health and mental health.

I always like to think there’s got to be another option to explore but so often it’s like talking to a brick wall with medical professionals and we find ourselves feeling like we’re stuck at a dead end. I’ll keep my fingers crossed that you get somewhere with it all. I’m always around if ever you want to talk. Just drop me a message, any time xxxx

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Looking for the Light May 22, 2021 - 10:56 am

Damn Caz!!!!!
What else? I had no idea about the sitting inked issue, luckily I don’t have that problem and my chair is my friend. I didn’t know you couldn’t sit in a chair. I’ve had my share of problems but against yours I’m healthy as hell. As for TROLLS, I know it’s easy to want to engage, just block them and save your energy. Life is too short and you need all the positive juju in your life.
I’m have my left knee replaced in two weeks so I’ll have my share of pain for a couple of months but it gets better around the three month mark. I had my right knee done already. I’m vaccinated and pissed at people who don’t take the vaccine, why don’ they get it. There are very few, a very small % of people who really should avoid the shots. People won’t do the research to understand what goes into making a vaccine and how it gets passed to know they are safe. Hell the COVID vac is more effective than the yearly Flu shot.
My hip pain continues and hell if I know what he will do next. I’m not bad enough for surgery so it’s take meds and sleep for 2-3 hours at a time until the pain wakes me up. this is my third time to be up tonight.
Life is good and I’m thankful as I know you are. Hang in there, as they say God loves you! Write back when you can but no pressure, just knowing how your doing is better than no info at all.
Take care as I know you try. Eveyting that goes down has to come back up at some point. I hope your point is very soon.
M

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InvisiblyMe May 24, 2021 - 2:17 pm

I’m glad you’re able to sit in a chair. It’s funny, it’s just one of those things you take for granted and never, ever think about… until you can’t do it because it’s insanely painful and debilitating. I’m still peeved that I bought a new office desk and chair for my room the year before the surgery… now it’s just for bloody storage & I hang my clothes over the chair! I do empathise with your hip pain. May I ask what yours is caused by exactly? Mine is nerve damage related and I do find Tramadol helps make things a little more manageable but bloody hell, I never knew pain could be like this. It’s all consuming and debilitating, not to mention annoying as hell. I hope you can get a few good nights of sleep before your surgery without the pain interfering too much.

Good tip on the trolls. Thanks for sharing your thoughts. It’s a tough one when you have that burning urge to say something back, to defend yourself or someone else. You’re right though, it’s precious energy wasted if they’re too ignorant to ever change their ways.

So your next knee surgery is in two weeks’ time, is that right? How’re you feeling about it? I’m glad you’re fully vaccinated, that’s one bit of reassurance because surgery is hard at the best of times, let alone during a pandemic. I agree on the vaccine side of things. I feel so, so sorry for those who genuinely can’t have a vaccination but want one because they’re vulnerable, those who’ve been completely forgotten as governments start to ‘reopen’ business again.

Sending love ???? xx

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trippingthroughtreacle May 22, 2021 - 2:57 pm

Hey Caz, I loved hearing your update but I am sorry to hear that the past few months have been such a struggle 🙁 As usual, I wish you so much healing love and hugs. In regards to the trolls, definitely don’t be silenced, they are just small-minded individuals who don’t matter a jot.

I’m struggling quite a bit with my illness too… I wish there was something I could do you fix all of us! But remember that there is a group of people who care and are always here for you, no matter what.

Jen xxx

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InvisiblyMe May 24, 2021 - 2:19 pm

Thanks for your lovely comment, Jen. I’m so sorry you’re struggling with your health, too. You’ve had so much to deal with, not just with the MS but with treatment and your home life. You are definitely in need of a break and for a bit of brightness and easing of the symptoms. I hope you realise your comment applies to you too. You always have me and the others chronic illness community rooting for you. Sending love & best wishes ???? xx

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Jacqui Murray May 22, 2021 - 4:44 pm

God has given you more than your fair share of challenges. My heart goes out to you. I have migraines, Rheumatoid arthritis, ankylosing spondylitis, a few nasty eye issues, but basically, they’re all under control thanks to my doctors. I don’t know what I’d do otherwise. Migraines–have you tried Aimovig? That’s my current gift from God.

Take care!

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InvisiblyMe May 24, 2021 - 5:19 pm

Thanks, Jacqui I’m sorry you know all too well what these sorts of issues are like. I really, really wanted to try Aimovig as I followed a few other bloggers who’d been trying it out in the US with some reasonable outcomes. Unfortunately NICE in the UK declined it for NHS use so we can’t get it. I’m glad you’re finding it works well for you – do you think you get significantly less migraines with the jab? xx

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Jacqui Murray November 14, 2021 - 2:49 pm

I’ve had migraines since my 20’s–over forty years. The Aimovig has made the pain more memory than reality.

The jab meaning the vax? That didn’t seem to affect my migraines at all. Did they help yours?

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englishwithkirsty May 22, 2021 - 4:44 pm

I’m so sorry that this has been such a tough time. Yes, I can relate to the rollercoaster of emotions and not necessarily wanting to share them on your blog. I have hope for the future too, but do think we will need to take things a bit more slowly than some people seem to want to. I hope you get some good news about your mum soon.
Take care, don’t feed the trolls, but know your reactions to them are normal. I’m around if you ever want someone to talk to.
Kirsty X

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InvisiblyMe May 25, 2021 - 10:05 am

I know you’ve had something similar with not disclosing as much on your blog. It can be a tricky one at such times, can’t it? Thank you lovely. I agree with how a slower, safer approach to getting back to “normal” is going to be needed. A lot of people and the media are suggesting the 21st June in the UK will be when the pandemic is over, which just isn’t the case. So many people, like those who can’t even had the vaccine because of other health issues, or those for whom the vaccine unknowingly doesn’t work, have been forgotten in the rush to reopen the country. Take good care of yourself, Kirsty. I hope the week is kind to you xx

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Rachel Duerden May 22, 2021 - 5:02 pm

I’m so sorry what you have to go through. Sending you my best wishes to you.

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InvisiblyMe May 25, 2021 - 10:08 am

Thanks, Rachel. Sending best wishes right back at’cha – I hope you have a good week! ????

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Despite Pain May 22, 2021 - 5:39 pm

Caz, I am so glad you have finally had the iron infusion. Why on earth do they make you wait so long. Surely if that is needed, it shouldn’t be a case of you needing to fight for it. That’s just crazy! Anyway, now you’ve had it, I do hope that things start to improve.

Private physio is so expensive and I hate to say it, but not many NHS physios do the real hands on physio. I have had one in my entire life who actually did deep massage work on my back. He was a spine specialist. All others have switched on a lamp and left me for twenty minutes which never made one iota of a difference.

Oh, those trolls!! I’ve seen some too and I think, ignore the troll, but then my mind goes crazy. I can’t ignore them. I had one a while back – a covidiot. He commented on something I’d written on Twitter about argued that the numbers all being made up. He gave all the usual rubbish about it not being real. At some point, I said that I’d had relatives who’d had it. One died, some were seriously ill and one actually in hospital for twelve weeks. The guy asked me to send their medical records and death certificate as proof!!! LOL….I said, sure, I’ll send private documents to a stranger on Twitter. Some people out there are simply crazy. It’s so hard to ignore them though.

I am sorry to hear that you’re Mum’s undergoing some tests. I hope she’s okay. It must be such a worry. Please take care of yourself,
Liz x

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InvisiblyMe May 26, 2021 - 2:24 pm

Thank you, Liz. I’m so glad I was able to have the infusion. I could have done with it a year ago so I dread having to fight for it again in future. I’m sorry you’ve found the same with NHS physiotherapy. I understand they want to empower patients and give them the tools (exercises) to do themselves. But there are some instances where the physical massage therapy is needed, and those people won’t get anywhere without it. It seems like a ludicrous waste of resources and staff who in some instances literally do nothing, because their hands are tied..

Arggghhh that guy on Twitter you had would have driven me crazy. It’s very, very hard not to react in an instance like that. I honestly don’t know the best way to deal with such things because not saying anything will fester and anger you forever more. But at the same time, you’ll never get through to the more ignorant, nasty trolls. I love that he asked you for medical records and a death certificate. I think that one’s lost his marbles, along with any sense of humanity.

I ended up reporting the Trolls on Twitter as that gives the option to block them as well. I hope you don’t get any more like that guy, though unfortunately there seem to be a lot about. If he ever comes back to you, could you ask him how the vaccines change our DNA & track our every move? I’d be really, really curious to know the science behind that! xx

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Mrs. Ram’s Jams May 22, 2021 - 6:04 pm

That’s crazy that you had to beg for iron! I go every three months to get infused because my guts can’t handle it in pill form. It does cost me out of pocket around $250 every time though, which is annoying!

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InvisiblyMe May 26, 2021 - 2:27 pm

Every 3 months? Wow. The nurse I had explained that they have capacity to do regular infusions, every few months or every year, for those who need it. I waited three years. Ideally I’d need it at least every year & half. Private costs around £600($850) but you need referrals and such I believe. It’s just ironic that those with illnesses, who’re already exhausted and beaten down enough, have to keep fighting for the things they need to keep them alive and just about functional… Meanwhile over there you have steep bills for the privilege of getting what you need. I wish there were an alternative universe we could hop on to where medical care was free and easily accessible for all. xx

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B May 22, 2021 - 6:30 pm

Getting lost in the woods seem wonderful to me.
And I’m sorry you have to deal with all that aweful shit.

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InvisiblyMe May 26, 2021 - 2:30 pm

Getting lost used to be fun many years ago. Not so much now because I was desperate to take the pressure off my hips so I won’t be making the same mistake again ????

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The Oceanside Animals May 22, 2021 - 7:37 pm

Lulu: “Trolls? Bullies? Nobody gets to troll and bully our Caz! Point me at them and I’ll bark up one side of them and down the other! Are you cats in?”
Chaplin (inspecting very sharp claws): “We’re in.”
Charlee: “Also, happy birthday to your mom!”

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InvisiblyMe May 26, 2021 - 3:40 pm

My mama thanks you kindly for the birthday wishes! And thank you guys for the backup – I’ll send you after them next time ???? I think you’d handle them better than I do – nobody would mess with the Lulu, Charlee & Chaplin trio! xx

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James Viscosi May 22, 2021 - 8:02 pm

That looks like a great place for a walk. Funny story ― years ago, back in upstate New York, my wife and I went for a walk in a local wooded hilltop park, and we wandered off the trail and couldn’t find our way back. Finally I decided we should just keep going downhill because there was a road at the bottom, and some businesses. So an hour or two later we emerged into somebody’s backyard, made it through to the road, walked up to a local bar (The “Do Trip Inn” or something like that), and called my parents to come get us and give us a ride back up the hill to our car.

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InvisiblyMe May 26, 2021 - 3:44 pm

Hahaha did you manage to ninja your way through that person’s garden without them noticing? ???? I love that story! I bet you were both glad to see your folks turn up in their car to rescue you. I wonder whether, in future when self-driving cars take over the world, whether you can call your car when you’re lost and it’ll come find you, rather than the other way around. Could come in quite handy! x

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tidalscribe.com May 23, 2021 - 7:59 am

Happy Birthday to your mother, I’m sure she must be a very special mum.

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InvisiblyMe May 26, 2021 - 3:45 pm

Thanks, lovely. Yes she is, I’m very lucky ???? I hope you have a good week! xx

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Despite Pain May 23, 2021 - 9:25 am

I commented yesterday, but I think it disappeared into cyberspace!

I’m glad that you’ve found a physio who’s giving some help, but such a shame that it has to be done privately. I know they don’t come cheap. I’ve only ever had one NHS physio who’s been ‘hands on’. He was a spine specialist. All others (and there have been plenty) have flicked a switch on a heat lamp or similar and left me for 20 minutes which resulted in zero help.

Trolls!! They’re to be pitied I guess. The whole point of their existence is to annoy people. Pretty sad. It’s easy to say ‘ignore the trolls’, but sometimes they really get to you, don’t they? I had a covidiot troll a few months back who asked to see a death certificate and the medical records of the people I knew who had died or had been extremely ill. LOL – sometimes there are no words to describe these people.

Happy birthday to your Mum, but really sorry to hear that she is undergoing some tests for a medical issue. It must be really worrying for you.

Take care, Caz.

Liz x

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InvisiblyMe May 26, 2021 - 3:48 pm

Thank you, Liz – I really appreciate you writing another comment and letting me know about the mysterious disappearance! ???? I’m glad you mentioned it because as you know they went straight into the bin, not even spam, so I wouldn’t have noticed. Naughty Akismet! xx

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DutchIl May 23, 2021 - 12:57 pm

Thank you for sharing a part of your world!… “No matter the pain or suffering, it is always better if it’s a burden shared by two, instead of a weight carried by one alone”… (Larry “Dutch” Woller)… no matter the issue, you are a courageous young lady and in time you will overcome the challenges… 🙂

Until we meet again..
May the road rise to meet you
May the wind be always at your back
May the sun shine warm upon your face
The rains fall soft upon your fields
May green be the grass you walk on
May blue be the skies above you
May pure be the joys that surround you
May true be the hearts that love you.
(Irish Saying)

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InvisiblyMe May 26, 2021 - 4:47 pm

You are always so full of wisdom and compassion in your comments – thank you, I really appreciate it ???? I hope the week is treating you kindly my friend! x

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notesoflifeuk May 23, 2021 - 3:48 pm

Loving the dog birthday cake you got for your Mum, I love it! Wonderful photos from your walk too. Sorry to hear about the bullies and trolls, that’s definitely the down side of social media and people hiding behind their screens.

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InvisiblyMe May 26, 2021 - 4:59 pm

You’re right, the trolls and nastiness is the downside to the online realm, even though it arguably has more positives to hopefully outweigh that side of things. Thanks for the comment lovely – I hope the week’s treating you well! ????

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Animalcouriers May 24, 2021 - 9:14 am

One step forward and two steps back. At least there was a forward step!

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InvisiblyMe May 26, 2021 - 5:11 pm

That’s a good way to look at it – at least there was one forwards step! ????

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Ann Coleman May 24, 2021 - 3:07 pm

I’m so sorry you’ve had such a rough time lately. As for trolls and bullies, it help to remind ourselves that there are far more good people in the world than bad, it’s just that most of the good ones tend to mind their own business so they’re not as visible. Whereas the bad ones actively mess with other people, thereby getting the attention they so crave. Hang in there, and know that you and your blog are very much appreciated by your followers and readers!!!

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InvisiblyMe May 26, 2021 - 5:14 pm

Thank you, Ann. You’re right, there are more good people in the world to outweigh the trolls and general nastiness out there. The negativity typically gets more airtime than the good stuff and the decent people, that’s a very good point. I really appreciate your comment and your kindness with your last part there. That means a lot, thank you ???? I hope you have a great rest of the week lovely xx

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mentalhealth360.uk May 25, 2021 - 12:07 pm

Oh my word Caz, you’ve had such a lot going on and I feel for you. Glad you managed to get the iron drip, even if you practically had to beg your GP As for the bullies, you know it’s best to ignore them — they’ve got nothing better to do with their time. Tell them to jog on…… xx

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InvisiblyMe May 26, 2021 - 5:16 pm

I’m glad about the iron infusion but it’s ironic how you have to beg and fight for the things to keep you alive and just about functional when you’re so, so damn exhausted. I agree on the trolls and bullies having nothing better to do with their time. Pretty pathetic really, yet many people are still badly affected by them. It’s like how I know what they’re saying is ridiculous and they’re just pathetic nasty people, yet I still felt pretty shaken and upset. “Jog on”. Take a run, a long way away from the rest of us preferably! Thanks, fellow Caz. I hope you’re keeping as well as possible ???? xx

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nickreeves May 26, 2021 - 11:40 pm

Those swing ball games can get brutal! I had not thought of this in so long. Migraines, also. All good wishes.
🙂

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Yiena May 27, 2021 - 12:06 am

Glad to read a mini update from you~ stay safe dear and hang in there a bit more~ surely darkness will disappear one day, hopefully sooner than we think~????????????

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Lindsay May 28, 2021 - 3:45 am

So happy to hear you all had your second jab! I hope it was uneventful and symptom-less. Bullies and trolls clearly have nothing better to do than to try to bring the world down. You’re fabulous and don’t let anyone tell you differently.

P.S. Love that dog cake! Was it as delicious as it is adorable?

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InvisiblyMe August 1, 2021 - 2:23 pm

Thank you lovely.

And yes, the dog cake was indeed very delicious! But it felt pretty cruel cutting him up, starting with his little tail. If I weren’t such a lover of icing I probably never would have been able to help eat his head ????

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Khushi May 29, 2021 - 10:08 am

so happy you’ve got your second jab!
please take care 🙂
I’m scared to come to twitter due to the similar reasons.. trolls and bullies. at the same time I just love the disability and chronic-illness community desperate to play a rather active role over there 🙂 also I love twitter.. yeah without being on it 🙂 hahaha

keep as well as you can and please stay safe 🙂

PS: love the ALT text on your blog.. hope you’ll add it to other social medias too.. it allows me to enjoy your images too 🙂 with your content which is a win win 🙂

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InvisiblyMe August 1, 2021 - 2:27 pm

Thank you very much, Khushi.

I’m glad the ALT text is helpful for you. I will be honest in saying I don’t do it on social media because I don’t know how. I will need to investigate that. I don’t typically post many pictures on Facebook or Twitter. I suppose I usually share links. Do you use Instagram, to go through the ALT text on images?

I’m sorry you’ve been put off trying Twitter. It’s not easy ignoring the awful stuff, but thankfully I think if you stay within the community, those outside of it that are trolling for the sake of being horrid are less likely to find your posts. Not that you should limit what you post about, of course. I’m just saying if you did want to try it, then I think it might be worth giving it a go one day. At least the option will likely always be there as I can’t see Twitter going anywhere any time soon! xx

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Nisha June 1, 2021 - 1:08 am

Your positivity is so inspirational Caz in spite of all you have to go through. The cake shaped like a dog looks super cute and birthday wishes to your mom .Hang in there and please take care.

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Ami June 10, 2021 - 10:58 pm

Oh Caz, I wish I could give you a big cuddle. I really do hope things get a bit better. You’re a strong and beautiful woman, and a fighter. Is there anything at all I can do to help? Send you funny memes from time to time? Send you photos and videos of Daisy? She is now 7 months old and very cheeky! Sending you all my love and all the hugs lovely! xx

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InvisiblyMe August 1, 2021 - 2:29 pm

Awww thank you lovely, I really appreciate that. I’m sorry I didn’t see these new comments until today!
Daisy will certainly keep you busy, and she’ll have you wrapped around her ickle paw in no time. Give her some cuddles from me! xx

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Louise Brady, Author June 13, 2021 - 11:17 am

Sorry you’ve been having a rough time recently 🙁
Online bullies never make any sense to me, like, why do they do it and what do they even get out of it? At least most of the interactions I’ve had online are positive, but the negative ones are always the ones that stand out and I’m never sure if arguing back or ignoring them is the best option! Take care and hopefully you’re able to enjoy some of the nice weather over summer before it gets too crowded xxx

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Shell-Shell's????tipsandtricks August 1, 2021 - 7:27 am

I’m sorry you were harassed. I hope you feel better! =)

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