Tag Archives: paraesthesia

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!

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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…

 


Tenth Circle Of Hell…

 

 

This may sound too personal, but I don’t really have “normal people/NT tact”… Skip if find “inappropriate” or whatever… But lets face it, we’re all built with the same things at the end of the day (generally).

***

I don’t know why I hope it’s not going to get any worse. It’s as if as soon as I do, it does just that.

There’s no sleep. There’s virtually no rest. I’m so exhausted, yet doing nothing – just breathing is enough to make me feel as if I’ve just run up an entire mountain.

First I lost control of my legs. Then I needed a catheter. Now… it’s peristalsis. Yes, that’s… gross. But it’s scary – I mean, who wants to find out that now those muscles are starting to fail too? I’m struggling – spent the last few days… a week?… I don’t know… in hell where it wouldn’t work and I was in agony. Even the smallest attempt at my body to even try either causes my bladder to contract instead (who the hell knows how that happens – and it’s beyond excrutiating)… and if the mixed signals end up in the right place, even that hurts because any muscle contractions below my sternum is agony in paraesthesia, because of how my Fibro has decided to confuse itself and make me semi-numb from the sternum down.

The exhaustion I already had was killing me. This now… This has really pushed me beyond my limits. I always have to push them, find new ones. Raise (or lower, depending on your perspective) the bar of what my limits are. It seems that wherever I turn, I get punched in the gut, disappointed, not helped, fed to the wolves.

Apparently the CFS clinic the GP put me through to won’t see me because they don’t deal with you if you have a pre-existing condition causing it… despite CFS and Fibro being well-referred to as “Sister-Conditions”, and there is no “Fibromyalgia Clinic” – otherwise I’d bloody well already be there, wouldn’t I? And the most infuriating part? They didn’t eve bother to contact me – they just told the GP instead. Cowards.

I even contacted a neurological physiotherapy company (private) to see if they would at least try to help me, and they just basically said they were unable to help me – despite my basically having the same symptomology as other conditions they willingly treat. I wrote them back and put a flea in their ear, to which they replied they would be willing to put me on their waiting list… Wow, lucky me.

It really does feel that wherever I turn, I’m getting shoved back, ignored, refused. No matter what I do or where I turn… just nothing.

The GP came to see me the other day at home. Out of the blue, without the warning promised. I didn’t fare well… and I’m not sure how well it went. It’s still hard to portray how hard it is to exist in this… situation. I barely made it to her downstairs, and I paid dearly for it after in pain. She claimed she wanted to help. Well, at least someone has said it. Meant or not, who knows. Or meant, but unable to be acted upon. Nothing matters except the results, at the end of the day.

I’m existing in Survival Mode. It’s somewhere I haven’t been since I was a child, and I don’t very much like it. But it is familiar… and there is something comforting about that. It doesn’t does me much good, but it does help me get through this God-Forsaken Hell I am currently living in. It stops me going stir-crazy with distress, wondering how I fell so far so fast. How I’m so far away from everyone and everything I love(d). How lost and bleak I am, that my existence is. How I no longer live or have a life. How I’m nothing more than a walking wheeling/crawling nothing. Nope… I’m not thinking about that. I can’t – or I won’t survive. Who would? I did this when I was a child because that was also a Hell, a crucible I was forced to run for nearly two decades.

Now… Now I just have to do it again. If a child can do it, so can I now.

 

 


New Accessories…

So, I got a catheter. It’s been three days so far – well, two and a half really – it was put late Monday afternoon and its technically 4:30am Thursday morning. The struggle to get to and from the bathroom was getting ridiculous, and the final straw was when I passed out for six hours straight in there when I tried to go, last week – then ending up with a complete memory block for the entire day: All I know about it s whatever I have been told.

My mother called up the next day and told them it couldn’t wait any longer, so they put me on the list for this past Monday.

It was scary, and uncomfortable…  but ironically, the worst bit was having the numbing gel put on – my paraesthesia did not like that at all… The procedure itself was over with before I realised – and I suspect it would be easier to have it without the Lidocaine. The procedure must be done every three months, so the best way needs to be figured out, if I must endure it four times per year.

It’s more than worth it, however. Already, there is a difference with nausea and bloating pain levels, other pain levels, and I’ve been able to play games and physically relax a little because the agony and exhaustion of going to the bathroom has been eliminated. I’ve not had half as much alcohol because there’s less paraesthesia pain due to less movement and exhaustion. After being quite badly dehydrated for years, forced into ignoring thirst and almost never drinking, puffy with water retention and with very dry and cracked lips, I’ve been drinking all the juice and water I can, and taking holistic water retention tablets, which are great and work a treat (and arguably too well, since I have to drain the bag an awful lot!). I feel amazingly better, lighter (like someone took away some of the cement living inside me) and I no longer feel bloated and pregnant with quadruplets. I can even straighten my back a little again.

Turns out long-term dehydration and water-retention isn’t very good for you at all…

Also – well, later on today, I suppose – I’ll be receiving a new Hypnos mattress (the same as they have in the Premier Inn rooms that have been helping deal with a lot of my pain), which will hopefully allow me to bring my pain levels down enough to make it more manageable (i.e. under 10) and thus allow me to take a break from the rather icky grape juice and Courvoisier. I hope it might help with the Fatigue, too, even if its just a little. It should be coming sometime between 11am and 3pm, and the room has to be organised so the mattress can get in (it’s pretty big).

I would like to hope it’s the advent of starting to regain some control over this, even for a short while. Historically, that just never happens – it all goes horribly wrong right after… so, I’m just going to just have to see how this one plays
out…

I Need Coffee


 


Fibro Flare-Up

It never ends

More cold. More pain. It’s been literally freezing and being home instead of in the Premier Inn has caused a lot or problems… unfortunately.
If there is a Hell on Earth, Fibro has got to be an entire district.
Inside me, it’s horrendous pain. Crushing, buzzing, snapping electric shocks, stiffness that’s impossible to overcome, feelings of pain I can’t even describe because I have no outside reference. All I know is that right now I’m at a 9.8. At least. I’m struggling to breathe, because as always, the crushing stiffness is also against my ribs, meaning my lungs can barely move. Mucus then builds up and makes things worse, emulating (but not being) and asthma attack.
To make matters worse, I’m unable to change (as in my “Grown-Up Huggies”), and (yes, oh yes, it’s gross) therefore I have to put up with it, without the privilege of being able to cry about it like babies do… I’ll only be able to make that better once the pills and Courvoisier have taken proper effect and I can move a little better again, without enough pain to pass out in the bathroom [again…].
Life also sucks when it takes [quite literally] hours to recover just trying to crawl to the bathroom and back. It’s also not nice when your Pampers are full, and I now understand  why babies cry. Because I certainly want to .
As bad as it was the last time, I really wish I was back in the Black Cat Premier Inn – all is forgiven right now. Did I say I (my parents) bought one of their Hypnos mattresses? Tried and tested in every room I’ve been in, they make everything so much better in just two or three nights. The only problem is they’re apparently handmade and it takes 30 days to make and deliver. That’s a long time of a lot of pain…. Therefore, roll on 27th December so I can finally get some sleep…
I put my courage to the sticking place yesterday and finally finally finished Dragon Age II on PC… Something  I’ve been trying to do for many years now [Character: Seranna Hawke] and Ii managed to do it. And it took a lot of stubbornness and self-medicating, but I did it!
On the other hand,  I still was unable to sleep and I think again went to sleep about 6am again. I  feel absolutely horrible today, another flu-like flare-up common to Fibro, and CFS, and I’m wrapped up in my specialist outdoors -6ºC sleeping bag, trying to ease some of the pain. It’s not doing to badly, either, bringing the pain down to a more reasonable 8 – especially in back and legs and shoulders.
On the downside, there’s a good chance of a full blackout, and I nearly had one, which is disconcerting. I’m horribly uncomfortable (thank you, Incontinence – really hoping will end up with catheter because I cannot function like this – I’m severely dehydrated – My lips are dry and cracked and painful, have to sit in wet Huggies, and am exhausted for hours just from having to go to the bathroom, and often pass out trying), exhausted beyond life itself, and in a heck of a lot of pain – even the touch of my hair feels like stinging nettles everywhere it touches.
Late this evening, around 9:30pm, I tried to go to the bathroom and ended up being such in there for over 2 hours, because I simply could not move. I couldn’t feel anything below my breast-bone – other than some serious paraesthesia in my spine and back of my hips, and so meaning Ii couldn’t move anything either. It took a lot to bring the pain down to a manageable level, then I dragged myself (commando-esque) all the way back to my room. That wouldn’t have been hard before this, but after having a lot of muscle weakness since, it was not to easy to manage. And I now had to do it all oved again not half an hour after I got back, because I had to go again.
Now it’s 4:25am and I still can’t sleep from the level of pain I’m still in. But at least I’m finally back in my room, in my tent.
It’s pretty tough to be ok with all of that.
Sheldon–What Fresh Hell
SLXLM
MXLLS