Category Archives: Fibromyalgia

The Hair Dye Rollercoaster

Dying Hair.

I rather imagine that to most people, it’s not that big a deal… Or maybe it is, because, well, it is their hair. But whatever that truth may be, mine is that of… well, if it goes wrong, it’s a Mega Disaster of Exreme Proportions. What am I talking about? Hair dying going very, very wrong. Not the “it’s gone accidentally green” kind, mind you — for me, all it has to be is the wrong shade (especially if it’s too dark). It’s a very, very real concern for me, when I have to start using a new hair dye, because my usual one is somehow available no more.

The very words new hair dye just fills me with dread. It could mean anything — a wonderful new find, or a complete disaster of epic proportions that scar my red-hair-loving sensitivities. There have been more than enough disasters. I’m too old and too experienced, and far too Aspie now, to cope with anything other than perfection. And I cannot guarantee that if I have to use a completely different kind of hair dye, and just do more than basically hope for the best…

As an Aspie (ASD/Asperger’s), I find any change incredibly distressing… Add to that, my finding out my favourite hair dye was now unavailable and had ceased to exist. Not only that, I’d not long had to go and find it as “the new hair dye”, because my former favourite dye had been changed just enough so that it was now unreliable, even had an unstable and unseemly colour to it… and I had been using that one for years. It was not good.

All this, along with everything else, was making things not too easy to live with, when it came to my hair. My hair means everything to me, and dying it red — no matter what shade of it that I’m after at any one time — is the biggest part of it. Without it, I wasn’t me. I couldn’t self-identify in any way if I didn’t look down as see red tresses. If I looked in the mirror and saw even a small amount of “Badgering” (where the regrowth is a mixture of heavy grey and nearly-black hair that is showing well enough to be obvious), then I started getting a little anxious it was no longer red.

An Aspie’s Dilemma — Fear vs. Roots

It might sound silly, or dramatic, to others, but so much swapping and changing was all starting to feel like Trauma. It can be downright traumatic to endure any changes when you’re ASD; but something that beloved [as my hair] being forced to undergo so many of them in a relatively short space of time (for me) makes it too, too hard.

This felt like Trauma, on top of Trama, on top of Trauma. This current rollercoaster of hair colour was emotionally exhausting, always having to go and find a new one that would suffice, and then having to use a whole new dye, forced to repeat the scenario over and over again, when this recently “new” one is discontinued or no longer available for some other reason.

Not only is all of this going round in my head to deal with, but there is also the part where I’m trying to come to terms with the fact that a replacement is required at all... My mind simply cannot comprehend why it’s necessary to discontinue or change something that just works. That fact is also difficult to comprehend. When it does happen… It’s always a split second moment of being hit with the feeling of utter grief and despair of the loss (yes, honestly, that is how I feel!), soon replaced by a sense of just freefalling and panic. What to do now? What am I supposed to do, what am I supposed to use, to colour my hair? Where do I go? Who [in the hair dye universe] do I turn to now? How could this happen? Why me? … Seriously. 😐 🤨

It runs through my head, over and over again, like a mantra of pure terror, of utter panic. It usually sends me into a frantic, fevered hunt all over the internet for something to replace it. Quick. This super-fast pandemonium is only halted by finding something that will… suffice… at being my answer.

I do hate doing at that though… It’s a sensation that I would rather never experience. Ever. I was saved from it for many, many years — but then the company went and changed it, somehow, and then I had to go to find different ones. Then a few months after I managed to find its replacement, that ended up discontinued without a word of warning. Leaving me with absolutely nothing with nowhere to turn. Just Charming...




This is how I have ended up with this choice — Garnier Olia. It has some lovely reds on offer; the one I chose (after some long pondering), was 7.40 Intense Copper.

My hair was dyed a very similar colour from my last one — therefore, to me, this felt like it showed the most promising liklihood to be an adequate replacement.

So, terrified and with great trepidation, I chose it and waited to find out the fate of my hair with this one.




New Beginnings. Again.

Starting the process of using a new hair dye was a Big Step. I had to try hard to convince myself to do it. In the end, it was the Badgering — at least 2 inches of the that damned regrowth by now — that did it in the end, and pushed me over the edge. I just couldn’t take it staring at me anymore.

The process wasn’t a complicated one, about the same as all the others, but it was more elegant and better thought-out than any other one I’d come across. It was rather clever and thoughtful to make it so you could use the box itself as a steadying stand for the applicator whilst you poured the Developer Creme and Colour into it.

For someone with dexterity issues and weakened fine motor skills, who is now very clumsy from it, this Hair Dye Set/Kit was the easiest one I have come across. For me, it is the most “fingers-friendly” of them all. I really liked using it, and I was constantly surprised as to how different (read: “easy”) it was to use to the others.

It also certainly didn’t hurt that it all came in some lovely packaging, too. The box itself is very elegant, sophisticated and eye-catching, with most of the front of it showing just the hair colour, not a model with it on, allowing you to have a better idea of what shade is to be expected when using it. The bottles and tubes within are pretty and easy to use — not to mention the tear-shaped bulbous applicator that is a fantastic shape to use it, and makes applying it, even with my rather struggling hands and fingers, easy to manage.

If the Kit itself was well-made, the product — in my own opinion — was just as much so. It was easy to use the dye, because instead of it being a form of… sticky, goopy, watery, well, goo… it’s a thin but creamy-esque texture that was easy to put on. It went much further than the average bottle of dye. It covered pretty much all of my hair quite well (and I have really long hair) and I only used the one bottle to complete my hopefully-not-too-different transformation.

I leave dye on to marinade/cook way too long — but I find that it works a treat. It’s not 30 minutes, like on the box… Oh, no. Mine is more like, 3 hours. Oh, yep! But afterwards, I get a pretty great colour, better than I did before.

To add to this, I also wrap it up in a plastic shopping carrier bag, tied around my head. This helps keep it from drying out, helps keep it safe — and things safe from it! — and allows it to marinade better under there. They’re quite the rarities now, but I end up getting a few of these plastic carrier bags from some places, and mainly Subway sandwich stores, due to requiring to carry multiple items on the back of my wheelchair, and of course, I hang onto them all to dye my hair with!


Shiny. New. Hair!

The rest of it now, even for me, is a piece of cake. After the required Marinating Time, it’s into the shower and the dye comes streaming off.

The rest, as they say, is history!

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Life In The Doo-Doo Lane…

Sometimes…. Just… No.

It’s 12.21pm — Sitting in Table Table, heavy nausea in my tummy, not enough food or coffee anywhere near me, miserable because it’s my own fault I’m here right now, and wishing I was still stuffed in my bed, either awake or asleep.

… Adulting is Hard…!

All my fault because, apparently, my brain thought it was a good idea to not close the stopper on my cath leg bag last night, causing it to leak all over my side of the bed. And then, just for good measure — you know, because that’s not quite enough destruction — I spilled half a cup of coffee over the side of the bed too. Whoopee. Yey.

Grrrrrrrr….!!

Context — I’m in Table Table with a companion, S. We’re in Caearnarfon Premier Inn, to celebrate our joint birthdays (born exactly one week apart, precisely the same year). Sounds Strightforward, right? In theory, absolutely. In actuality…? Oh, Hell No!

It was all going to Hell in a Handbasket before then, anyway. That was the main reason for going — some R&R. Except, from even before we left, it was all going wrong. It should have been a sign. But since it wasn’t bight, neon, and flashing in screamingly-loud electric-blue… I missed it. And, so, the games began. Nothing has gone right, and this is the latest in the boo-boos list. And relatively speaking, not even that bad.

… I’m sure there are many, many more of them still to come!


So, we have been forced to allow housekeeping into the room. Therefore, I am hiding from them in Table Table, until the coast is clear to return to the room, and the scary strangers are gone.

… Dear Gods and Spirits, I feel like crap. I wonder if this is what hangovers feel like…? If it is, I finally feel sorry for the bastards who have one — although, theirs were knowingly self-inflicted, and mine was most definitely not. I would never knowingly do anything that did this me!


13.50pm…. Finally returned to the room. Only… Nothing has changed. Except a towel that was on the floor for them (so they know it’s to be taken) in the bathroom was removed. I’ve done a better rush-job at making the bed whilst in a super hurry than they did now — it looked like no one had even bothered, to be honest. I’m not sure they had, since I’d also made it this morning.

Cups changed. Towels changed. Bed linnen not changed. Have I been in hospitals too much, or in posh overseas hotels too much, or do Housekeeping just not change bedding anymore…?!

This was a pointless morning; they did nothing useful….!😟 I’d have most certainly been better off staying in bed and not killing myself trying to get out of this damned room before they got to it…


So… that’ll be one more boo-boo to add to the list!



Anniversary of Hell…

Today is the anniversary of when I first was taken into hospital

On the 28th January 2018, I was booked into a Premier Inn, to go to my niece’s christening the next day.

Instead, I was carried into hospital, barely semi-conscious and screaming so loudly apparently they had to put me into a former office/storage closet, until they had a bed to feed me tramadol and morphine … I woke up in a hospital’s SAU (Surgical Assessment Unit) instead of a hotel… and my parents lost over £200 for the booking… 😢🥺😖

My brain is trying to process it, rather unsuccessfully, to be honest.

However… I like the fact the anniversary of my leaving coincides with one of my new physio appts. I think that’s telling. I could not even wheel myself through the hospital back then.

To celebrate it with something that would have been so alien to me back then, doing what I thought was impossible — like being able to sit up a little on my own, or hold myself up on parallel bars for nearly a whole minute so my body is “standing” upright (as in, I have managed to become strong enough now to hold all my bodyweight enough, so I could raise myself upright on them)— is almost confounding … 🤯


Dear Chronic Illness/ Pain/Conditions Sufferer…

A Message For Anyone Who Is Suffering With Chronic Illness/Pain/Conditions… Especially Those Facing This (whether literally or emotionally) Alone…

I’m so sorry you’re having to endure this — it’s difficult enough to deal with one condition, let alone several and at a severe and heightened state too 😦

The first thing I really do want to say here is: **You Are So Brave**. Truly. What you are facing is truly horrendous and scary (Chronic Illness/Pain/Conditions are utterly terrifying, and people do NOT EVER take it seriously enough! 😡*big scowl*🤬), and yet, still, you face it. You endure it. You keep fighting. You are still alive and you haven’t given up. That is ALWAYS admirable and commendable. Even though you feel utterly awful and exhausted and frightened, it’s still true. So, please try to remember that… 💜

I think I may have some understanding of the awful situation you’re having to deal with — I have had  Chronic Pain and Illness and Conditions, all at a very severe level for prolonged lengths of time, including many asthma attacks requiring emergency hospital treatment (I’m now strangely very comfortable and familiar with the back of an ambulance… 😒🤨), and I’ve suffered more than my share of PTSD with many things that have unfortunately happened to me, and have even attempted the worst at times… And I am well aware of what *I* felt and suffered in those times, and I truly never want to think about what I had to go through with the episodes of psychosis I have suffered on many a pill I’ve been told to take, it was so very horrendous. To be on them continuously, without being able to come off them, must be harrowing. To anyone who cannot come off them, *You* must be very, very much suffering with this… 🥺😟

As an Autistic person (Asperger’s), this also made all these experiences worse [for me] because the way I deal with every small thing in life is that it has to be controlled for me to understand it, and without understanding this (my illnesses/conditions/pain) it made it all the worse… So, I’d like to think I’m coming from a place where you might feel I do have a little understanding of being where you are.

Whatever you are going through, it’s going to feel like such a lonely, awful, frightening place to live — so near yet *so* far from what you truly need. You have, quite possibly, been through such utterly terrifying and traumatic experiences whilst dealing with your journey. I lived in London with all kinds of available people in several hospitals around me — and yet I STILL could not get the treatment I needed for the (many, many!) things that have and are wrong with me, so to not have ANYONE around in the medical practices around you, that is the most scary, almost more than than anything. It doesn’t matter whether or not it’s available, when you’re not being given it, you’re having to watch your life disintegrate around your ears, and not being able to do a thing — not a goddamned thing — to help yourself, because no one told you how. I did ALL the wrong things with mine… If there was a checklist of all the thing that were bad for my condition, I did them all, because I thought I was helping myself. Turns out, they all were the worst things I could have done. Unfortunately, I found out too late. Far too late.

img_0893

I have Fibromyalgia and Hemiplegic Migraine, which have somehow amalgamated into some weird-ass crap that doens’t even have a name… something doctors can’t seem to understand or treat, that comes with horrific pain that can only be barely dulled with fairly high doses of Oramorph and Tramadol. My PTSD (now) comes from hospitalisation for a severe blood and bowel infection, and the utter shock and grief of having lost my hard-won “normal” life in London and my pretty amazing IT Career in one fell swoop from this “Fibromyalgia hybrid” (or “Fibroplegia” as I’ve come to call it) that I’ve ended up with (which has also made me almost completely numb and partially paralysed from the chest down), and the fact it took over 2 years to get an initial diagnoses and then a full 5 years to get any treatment at all for it — and by then it was too late, the damage was done and I was wheelchair dependent with no ability to use my legs.

The same thing happened as a child suffering from… something. They called it “Depression” and left it at that, filling me (as a child of 12 and then for many years later) with Prozac and whatever other medication they felt like. Precisely 20 years later, I finally get the diagnosis that really explained it all — “Autism/Asperger Syndrome”. Despite being under them mental health system in so many different ways for most of my life, they ALL somehow missed this, and my miserable life kept getting worse and worse, causing a lot of VERY bad things to happen to me, and I ended up with severe PTSD and suicidal and anorexic/bulimic because of it for over a decade. Unbelievably amazing….

Both times, *despite* bring in the middle of access to treatment, they still refused to give me any. Until now. In that sense, I absolutely do understand how it is to ask and ask for help and nobody listens or understands the severity of your health condition(s). I certainly may as well have had nobody there…

The harrowing [emotional] pain, the physical pain, the anguish, the despair, the panic, the desolation, the desperation, feeling like absolutely NOBODY understands, the loneliness, the isolation (whether or not there are people around you), and also, finally, that hollow and numb-feeling of depression that eats away your insides that causes even more anxiety and panic, making the PTSD flare and get even worse.

It spirals out of control and it’s all just like trying to outrun an avalanche … no matter how hard you try, you’re going to get buried and suffocated with it.

*

I’ve written a lot, and I’m sorry about that… However, like I said above, it’s hard when it seems like nobody understands, so I thought perhaps that I could prove that I probably really do…?

I hope that I have. Because all those feelings that were described is pretty much part and parcel of all chronic illness, and most feel them — but, of course, we’re not allowed to talk about them outwardly, so there’s nowhere to turn and nowhere to go to discuss it, those feelings, or how very VERY white-hot terrified and desperate you really feel inside.

Keep talking, keep reaching out — to doctors, to people here, online, to any people in your life who could/might/do support you. It’s not anywhere near easy to even begin to cope with the first part of dealing with lifelong Chronic Illness/Pain/Conditions.

The first step is a little like AA — you have to accept they are part of your life but you will love yourself anyway. Remember that you’re a person WITH a conditions/illness, and NOT an illness with a body/host.

Remember that you’re worthy, you matter, you’re a person, and YOU ARE YOU — and having an illness/condition doesn’t stop that from being true.

The next is to put into your mind to not being a “Victim” of any kind to your condition/illness — not having access to treatment or a clinician/GP is going to make you possibly also feel like a victim of circumstance, of the Post Code Lottery; but it still doesn’t mean you have to FEEL like one… It sounds so trite, I really do know. But you *should / hopefully might, eventually* feel entitled and rightful indignation that no one is helping you, that no one is taking you as a person that matters and deserves to have their space and be heard, and helped.

I don’t believe anyone should go through these things alone. It’s not right, and everyone has a right to be heard and helped, in whatever way possible. I hope you feel I have heard you?

Keep being strong, keep having courage, and keep up the [terrifying, seemingly impossible] good fight xx xx xx.

💖💖💖💜💜💜


Anxiety & Chaos — The Antithesis of the Aspie Mind…

Anxiety and Chaos rules my mind. It feels like it’s been long buried under mountains of agonising pain, sorrow, grief. Fibro-Fog, medication, and more and more Chaos and Anxiety. I can feel my mind still there, calling, struggling to be freed, to be heard… yet, there seems to be so little I can do about digging it back out.

As long and all this overwhelming Anxiety and Chaos rules me, rules my life, is forced upon me – truly, it seems that no matter what I do to prepare against it, it floods and breaks through my defences and laying siege until I can do nothing more against it. – it will Rule me. It overwhelms me. Then, it eventually takes over me. My life. And now, it just simply continues to do so… because I have only so many spoons at all, and that number is barely above Zero, and none of those spoons are even remotely strong enough to fight against the sheer mountain of things that continue to suffocate me every minute of Every. Single. Day.

With no Short Term Memory to speak of, and pretty much no Long Term Memory to fall back on (although, thankfully, the odd one can be brought out with certain triggers, unfortunately few and far between), it’s like I am nothing and no one.

As an Aspie, who once remembered everything and anything just about, this fact is near killing me inside. I still don’t know what to do with it – the grief and frustration of going through this, being forced to live without something embedded into me, that was an intricate part of me… Quite often, it is all too overwhelming. Even the inability to control my environment was entirely reliant on this… and without it, Anxiety and Chaos reign entirely. It is painful and frightening, and there seems to be nothing I can do about it – and I feel this because I have gone through everything I can think of over these past Five Years this has been happening to me…

I physically cannot move – my condition leaves me with only the shoulders and arms and what is above it; pretty much nothing else is movable by my own conscious will. I must remain on the floor whilst upstairs because my chair (or any chair) cannot fit up here; the house is too old and the landing is far too narrow to accommodate one. This means that I remain next to useless up here – unable to move or control my own environment in my bedroom. Despite assistance, there is no way to keep it sane without someone perfectly able-bodied to take things out and put them away as required. Whilst I may be able to retrieve something, putting it back may cost too much spoons, or be too difficult – or worse, I might forget.

I have been numbed by the sheer and exhaustive amount of confusing and destructive emotions that keep washing over and drowning me. I do not like emotions – actually, I loathe them, and wish they did not exist. And, quite frankly, there are definitely far to many of them. It’s a cornucopia of horror that I flail at, until I fall victim to my terror and end up falling and drowning beneath them all. “NT” people have called this dead numbness “depression” – but I’ve studied psychology for years, and what I have has never quite been fully described by that theory, and it does not fully cover what it is that I experience.

I am TMI (Too Much [Sensory] Information) when it comes to all these emotions – and all are fuelled by my two arch enemies: Anxiety and Chaos. I literally cannot live like this – I barely even exist like this. To live, to participate in… well, something, anything… to do what I love again… That would be Everything.

So, by that measure, it seems that right now I would have nothing…?


Southport Stressing

Getting ready to go to Southport now. It’s been … Close to unbearable. Bladder spasms are frequent – they already shoved my catheter out last night and had to call the nurses in 😞

Feeling the overwhelming tidal wave of panicking nausea as the reality of my “life”, or what fragments remain of it, hits me once again. It makes me want to scream and cry inside, and again I wonder… how on god’s earth am I supposed to cope with all this… 😞🙁🤯

The theory is that I’m going to my niece’s First Birthday party for my sister. The reality is I had no choice: With everyone else at home going, I have no choice but to go along too, staying 4 nights in a Travel Lodge in Southport (they have… acceptable… Accessible Rooms… Very basic, not too great for wheelchairs — and instead of a nice king size bed like in all other rooms, it has two children’s, cabin bed- sized beds pushed together… 😡😤). They also take dogs, so it has to be with them… And I miss my Premier Inns now… 😔

Buddy the dog is ready to leave …! 😁

I basically am forced into coming for that time because my mother is going there, visiting my sister and her little family, for that long. And without her being here, there is no one then to help me with certain things you definitely don’t want your father doing…! Thus… I have to go, too.

It’s not even about whether or not I even want to go to my niece’s party. Well, what ASD person wants to go to an echoey town hall filled with screaming or crying kids and a whole load of “adults” playing with them…? He crowd, the noise, smell of foods, the echoes… Nope. But… It’s not my choice. Either way. Even if it’s nice to attend your first niece’s birthday party.

I didn’t want to go away (to anywhere); I’ve spent the last month or so travelling a load and staying away. Even living out of a suitcase at home because what was the point of unpacking to leave again…? I’m beyond-dead-inside exhausted, and there are Roman remains buried out there that feel more alive and with it than I do.

I’m in immense pain, a hair’s breadth away from a major meltdown, and barely keeping it together. Hence this little rant now…


Keep Going…

Has anyone ever been through this before?! It’s not on the Internet if it is… or very well hidden! My catheter issues are exhausting me and causing even more pain than I already have… but without it, I can cope even less.

That point was proven yesterday, and part of the day before. And today, I’m really suffering for it.

Twice in 24 hours! I can’t believe it came out within just 8 hours… and I thought it coming out 24-72 hours was unnecessarily awful…! It’s caused unbearable pain, in me, who usually can’t really feel anything. I had no choice but to agree with them that the bladder and urethra required some time for R&R… even it it was just for a day, or a night.

After agreeing to leave the catheter out for as long as I could bare it, for at least 24 hours if possible, I did it. I tried and fought and it was horrible. Emotionally, physically, psychologically, it completely messed me up – which was something I did not require during a massive Fibro Flare-Up. Now I’m broken into even more pieces and too exhausted to barely move  – and don’t get me started on the fibro pain and even less moving parts than normal.

I lasted until 5pm yesterday, which is over 24 hours. It was a struggle, and… disgustingHumiliatingExhausting. Shaming. When you’re struggling to manage to change your own paper Grown Up Huggies Pull-Ups every 2-3 hours (if you’re lucky), struggling to move from a Fibro-Flare-Up, when there is no one to help you, when you’re stitting in your own ick because you just can’t move and are unable to – too exhausted to – change, and you don’t sleep. At all. Except for a short catnap between about 8:30 ad 9:30am… if that counts at all…

Eventually, I caved. I had to have it put back in. But it wasn’t happy from the start. As usual. By 1:00pm, it was already seriously trying to wiggle its way out. It’s pressing against… something, I don’t really know, I presume it’s something like the pelvic floor area, maybe?… and it’s setting off this pain like electric shocks and strange body-wide pins and needles and tingles – especially when the bladder spasms and pushes out more water.

At 5:15pm it was pressing so hard it wouldn’t take much more of a hard Release flood to take it out. It was at the 24 hour mark, so it seems inevitable. I don’t win, either way. I need that Suprapubic Catheter ASAP. Except the Urology Department doesn’t seem to be taking much notice of it.

It’s in Retention-Release, despite also slightly draining as well. During the Release, it leaks (bypassing), and creates an immense amount of that pain mentioned just before. It’s so overwhelming I can hardly breathe and makes my eyes really water badly, as well as making me feel quite lightheaded and disorientated. It’s not nice at all.

It’s hanging in there but not my much. One big Release is probably all it will take now…  😦

*

Also I’ve had enough about the OT and social worker. I cannot get anywhere with them, and they won’t talk to me (despite my dad and I leaving messages with them since last week), and thus I have put in a complaint against them with Conwy Services. I’ve also had to call what they call single point of access to request a referral to a new OT. My fourth one now.

This is also along with the fact one of the district nurses thought it was perfectly OK to go and call the incontinence nurse to ask about getting me medication for bladder spasms, and then take that request to the GP all without informing me or getting my consent. I’m hopping mad about it, and she’s not even in today… Naturally. I wouldn’t have even known about it if the GP surgery hadn’t call me to tell me my prescription was ready. So, confused, I obviously ask, What prescription? And apparently it had all been done and dusted for me without my knowledge, my input, my consent. I don’t even know what it is. Or if I have sensitivity or allergies to it, or whether it will conflict with my von Willebrand’s.

Now I have to wait until tomorrow to see what this is all about, and, frankly, expect an apology from them. I’m a very tired and grumpy Lel right now… you really don’t want to get on my sulky side… It’s not pretty, and I will say what I think!


Catheter Conundrum…

This catheter situation is starting to get a little beyond out of hand. Yesterday, it came out twice. Within 8 hours of the first one being inserted, it was out. And I thought 16 hours was being ridiculous…

In the early hours of the morning, the night staff from the District Nurse office came to reinsert it. Fortunately the people there are lovely. And patient. I have to call them out so frequently (or go to their clinic, if I am able to) it’s beyond a joke – it stays in for 24-72 hours mostly.

img_0887The one that first came out yesterday had been in for 5 days… I don’t know what the secret was. But strangely enough, I had no sensation of it coming out (there’s usually a sensation of a stun gun that has a very sharp pointy end stabbing me and shocking me). The one that replaced it was in for 8 hours… so go figure. I barely felt that come out, but there was a bladder spasm at the time, and I vaguely felt it being shoved out.

To put into context, they’re supposed to stay in generally 8-12 weeks.

It comes out with the balloon intact. A filled 10ml balloon at least 3-4cm [or about 1.5″] in diameter. I can’t even tell you how teeny a urethra is, but it gets shoved out of it. Sometimes it feels like my body is trying to lay an egg… Every time this happens, that is what happens – and yet no one has done a bladder scan or checked how much damage is being done to the bladder and urethra by this constantly occurring. I imagine it’s a lot.

The worst pain comes with bladder spasms and what I term “Retention-Release“. This means the bladder goes into retention until the spasm that causes it is unable to keep the pressure on the full bladder. Then, when it cannot keep it up anymore, it releases… all at once, and causes horrible pain. Now, though, it’s through the roof. And if I can feel it, and it’s unbearable, then it must be bad.

This morning the bladder has been going into Retention-Release badly. There was less than 100ml in my night bag (attached to leg bad, which was empty). It wasn’t until 11:25am that it overfilled and released (after coffee, a diuretic). And it hurt.

It released about 300ml at once. It was agonising. It feels like… a stun gun with a very sharp and pointy end both stabbing you and electrocuting you at the same time. It’s like that constantly right now, but when it released, it’s unbearable. If I already didn’t know what utter agony was, I’d be screaming. But I do, so I don’t.

My urethra now feels like it’s being tasered to death. It is well over a 10 in agony. And as someone used to living with agony 24/7 for five years, I can tell you it is horrific if it affects me that badly that I care and feel the pain.

I cannot sit on it. I literally cannot stand, so that’s out. A little bit of being raised on my kneed on all-fours like a baby helps a tiny bit, but it’s not like I can keep myself balanced there forever, it’s not like my legs can keep me up… So I’m stuck with it.

I feel dizzy and sick (as in seriously nauseated) by the agony. Lying down doesn’t help either. I’m stuck with it, and I probably will pass out from it. And I’m home alone with no one to help me.

Paraesthesia is no joke – it is my pain, my agony, what causes screaming both inside and out. It’s the same intensity and agony as if you had been crushed and fallen several stories from a building and survived. But if you did that, you’d get Fentanyl, Ketamine, some serious Morphine. What do I get? Tramadol, and if I’m lucky some soft-crap Oramorph (just 10mg).

The formally-empty night bag now [at 11:48am] has over 600ml in it.

Come 12:17pm and it starts again. It floods. It comes out. I’m vibrating from shaking.

I’ve had to agree to keep the catheter out as long as possible now, up to 24 hours, or more, if possible. I’m not seeing it… But I agreed to try. Doing it though… Well, I’m not so sure about that. My bladder is still in Retention-Release. It’s very painful when it does release (all at once). I’m not going to be drinking much now. How can I, if the consequence is, effectively, wetting myself? In a grown-up nappy, sitting on a incontenence may for babies? And nappies that I have to change ever couple of hours?

The only reason I’m even agreeing to this is because my current Fibro Flare Up is so bad I cannot move or go anywhere anyway – otherwise I wouldn’t be able to go anywhere because of this, and I find that unacceptable.

I’m highly anxious. This makes me feel…Gross. Ashamed. Like I’m a baby again. Or a puppy that is still learning… I can’t stop it, I can’t change it, and I can’t help myself… There is nothing I can do about it. It looks like I might not even be able to be catheterised anymore, if this is what it’s going to do. I’m at a loss as to what I can do, and the professionals are at a loss as to why. All waiting for Urology to come and fix it. Except they aren’t listening, or making it quicker.

But that’s my life now… All about the waiting… and, thus, the suffering…

 


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