Just Me..

I imagine the few of you that still read my blog are the ones that haven't clicked "block" or "hide" or "mute" or whatever else on my social media profiles of late. And believe me, I know exactly how I sound a lot of the time... When it's not random stuff, it's me, moaning and fed up about, well, me.

And this post is not much different.

Once again, I'm struggling to sleep very much. And this is with medication to help me sleep. I've been put back onto Amytriptyline which I hate, as past experience has proven it makes me exhausted and spacey. Well, not this time. I took a tablet at 10pm,and another at half past midnight. It's now a quarter to two in the morning and I'm still awake.

This time I suspect it's due to a hardcore 24-hour migraine that hit me Monday lunch time. I flaked on the sofa, thinking a nap would make it bugger off, but no... At half five that evening I went to bed, and woke up again at 3am. Then 10am. Then midday. And 2pm...

I got out of bed at seven this evening, had something to eat, and went back to bed at ten. I feel shit even now... Still have a headache, and now I feel bunged up...

On top of this (seriously, I know...) I've got a bloody tooth ache. Thanks to a dentist visit which was filled with needles and drilling to prepare a tooth for a crown, as the filling in it was too big apparently... My tooth wasn't hurting BEFORE, but it is now.

I'm so sick of this. All this. Me feeling crap all the time and not sleeping. Me feeling crap physically and mentally. My body hurting or being exhausted, my brain being filled with crap and worries...

I ended up being discharged from care under the Pain Management Service, thanks to my piece of shit brain. I had an appointment, which I remembered wrong, checked the appointment letter which I read wrong, and ended up going to the wrong place at the wrong time on the wrong day. So as I classed as a "No show" they discharged me. Back to square one, waiting for a re-referral. My brain sucks, I hate that it is so unreliable.

I CAN count on it to be paranoid. To over-think everything. To imagine the worst in every situation. To wind me up, stress me out and drag me down. I wish I had a period of quiet time, to chill out, recharge, run at my own pace and do my own thing. Every day just seems to be filled with STUFF and I struggle to keep up with it, so the next day has more STUFF, so I struggle more...

And on and on and over and over.

I'm tired, I don't feel well, and generally am sick of feeling and even looking the way I do. I'm sick of people telling me that "positive thinking" will cure me. I'm sick of people asking how am I as a way for them to tell me what's wrong with them without even acknowledging my reply. I usually just say "I'm OK" now, as people don't want to hear me detailing how my body feels trampled. I'm fed up being the one that has to message first to start a conversation, let alone writing long messages to people that only get an "ok" reply three hours later, or even better, no reply at all.

I probably sound like a whiny, moping brat to some of you, and that's fine... This being my blog and all. I just wish people understood how I feel 95% of the time. You don't even have to care that I feel like crap - just understand that I do.

I'm sure I could go on and on, but I won't. I'm just fed up of trying to make people get that I feel like complete crap most of the time. If you still don't get it or care, then I'm pretty sure you never will. And that's fine too - just don't roll your eyes and sigh when I moan about it here or anywhere else.

Feeling Rough

You would have thought that having had a relatively busy weekend, followed today by getting up at half eight and being proper full-on busy All. Day. Long... You'd have thought sleep would come easily.

Pfft, you'd have thought...

I honestly didn't stop till about five this evening today, and I had to use all my faculties too, physical, strength, mental, dexterity, following lists and instructions, crouching low, stretching high, trying to not lop off my fingers or fall down stairs, and remembering how to type and count too..

Last night - well, most nights this last week - have been horrendous, even for my sleep patterns, and while I could have done without being quite so stupidly busy today, I thought - foolishly - that it might help me sleep.

So, early night... Nine o clock.

And here we are at half midnight already. I know what most of the issue is. My body is screaming, and my head is swimming with what feels like blancmange, and thoughts struggle to rise through it.

So here I lay, three and a half hours of trying to sleep, so I figure I'll try blogging, focus away from sleeping.

Or not sleeping, as the case is.

Thursday, I'm going back to the doctor and asking for a referral back to Pain Management. Not that I am holding much hope with them being helpful... Just like the last times (yes, plural) I've been there.
And maybe this week I'll learn to stop running around doing everything and delegating to the rest of the household to do something. I know I can't keep going on like this. I nearly fell out the shower yesterday. I almost fell down the stairs today. Twice. I nearly stuck myself with a knife AND almost lopped off a finger today too.

Not good.

Anyway, I'm going to return to the bed and staring at the ceiling now in a hope that part of my body realises it'll stop hurting if I fall asleep, and will feel better in the morning.

OK, not better... Less shit, maybe. Unless I did more than I should have done today, in which case, I'm going to suffer for the next few days.

Joy.

Wish me luck.

Gotcha You Ba$tard!

You may recall over the last few years with Kellie, her health issues have always been a bit of an issue. Aside from the hassle of her Familial Hyper-Triglyceridemia, she had the occasional issue with having wonky-heartbeats.

To be honest, this has been going on for as long as - if not longer than - the Triglyceride Saga. Over the last few years, she's dealt with it, felt sick from it, been to the doctor about it, been referred to the Cardiac Unit at the hospital about it, worn 5-day monitoring hardware, had paramedics out about it, and been taken to the Critical Dependency Unit section of Accident & Emergency over it.

At no point has anything been found, nor has Kellie been taken that seriously. From "it's all in your head" to "Panic Attacks" to "Arrhythmia" she's been told different things by different medical "professionals"

Her Lipid Doctor, a few months ago, took a look at one of her old ECG Traces and decided she could see Atrial Fibrillation. So that's what Kellie has "had" since then. Her heart goes funny due to Atrial Fibrillation.

So today... I was in Asda, after spending the morning traipsing around town with the 0dd Sister shopping. I had a basket of shopping, was hot, tired and miserable thanks to the old farts bumping and shoving around the shop. My phone rang, and it was Kellie.

"I don't want you to start to panic... But..."

Words you know will actually do the very opposite.

James was taking Kellie up to A&E. She had had one of her funny turns, lost all her colour, went sweaty, had a crushing pain on her chest, pain in her left arm... No good things at all. So I dropped the basket, hastily apologised to the sister, and flew out of Asda, ran to the bus station, and jumped on a bus to hospital.

I got there PDQ, just in time for Kellie to come out of triage with James acting as bouncer/bodyguard/human wall, and we sat with the woman, watching her sway and look like shit-on-a-stick. Got her booked in, and within ten minutes, we were called through.

I didn't tell her she was flagged as "Urgent Priority"

We said bye to James, thanked him, and followed the nurse into the Critical Dependency Unit, and got her settled onto one of the beds, answering some basic questions as she did so. She wandered off, and a Senior Staff Nurse came in to take some bloods. However, she already had some taken yesterday at one of her "How Much Gross Stuff Is In Your Blood" checkups, so all her results should be on the system. Huzzah! No needle!

He then started asking questions about how she felt, what was going on, describe how it felt - all this stuff that we've gone through a squillion times before. But, she explained how she felt, me adding bits she missed, and him sort of listening. He decided to do an ECG, so put the stickers on her body - some that I feel were in a strange place, compared to where I've seen them done usually - and ran the machine.

It did it's ten-second trace, spat out the paper, and he had a look at it. Hmm'd a bit, "Your heart is fine" he decided "There is no Atrial Fibrillation on here at all. Your heart is healthier than mine!" he proclaimed.

I wasn't happy.

He then started down the route of "Do you know what a panic attack is....?" which is another term for "I'm going to fob you off now" especially as her wonky heartbeats have woken her up in the night. There is NO panic involved whatsoever. Kellie cut him off dead there. She was tired, felt crappy, and didn't want to be there..

"It is NOT a panic attack, I have had panic attacks before now!"

He shook his head and looked back at the ECG. "But your heart is fine. I will go and ask a doctor to give you a second opinion if you like?" Damn right you can do that. Go find a doctor to look, to talk to us, to explain. For several years, we've been fobbed off, so yes, he went to get a doctor to give us a second opinion.

A short time later, a pretty little doctor came in. She was young, and about three inches tall. VERY friendly and nice, and she went through everything, listening to both Kellie and myself. We went through history, examples, symptoms, triglycerides, how it made her feel before-during-and-after, described it in her own strange words, and generally took note of everything she was told.

It was decided that Kellie would be hooked up to a proper monitor, so they could see her heart beat, rate, blood pressure, sats, respiration's - the whole medical shebang. A nurse came in and set it up, or, at least, attempted to... She put the stickers on Kellie, wired her up, but nothing. She went then got called out to a properly poorly patient.

Step in Super Dan.

I've done my fair share of setting up heart monitors and ECG machines. I know where the pads go. I also know - as apparently the nurse did NOT, that in order to get a reading, the sticky pads need to be connected to the patients skin.

NOT the patients work tee shirt.
And NOT the patients bra.

So, Super Dan removed and reattached the pads, and low and behold... Beep, Beep, Beep, Beep - one functional heart monitor.

Nursey came back in and noticed it was now working (I said I jiggled it!) and started doing Kellies Observations. Low and Behold - the Sats Monitor wasn't working. Out goes the nurse, in steps Super Dan and using the technical-know-how of "Unplug It, Count to Ten, Plug It Back In" the little red light came on JUST as the nurse walked in.

Kellies Sats seemed a little low to me - 95/96 or so, fluctuating up to 99... Hmmm.

And so, left alone, Kellie and I sit quietly. I watch the heart monitor (I don't know why, they are just mesmerising) and try to keep my mind occupied on the in the present, not the past when I used to watch other heart monitors...

I hate hospitals.

While watching, I notice a funny sort of blip on her heart trace. At the same time, Kellie says "Ooh there's another one, that felt weird..."

Proof! Something was there, and there was no one medical around to witness it. Cue the phone! Out comes the phone, and the camera, and Click! One photo.

I run out the cubical up to the doctor and show her the phone picture. "Oh wow, good catch!" she says, and borrows it. She goes off to show her boss, who in turn gets ahold of the Cardiac Registrar, and explains to him what Kellie is going through, and what I caught.

I go back to Kellie, feeling a little smug that someone has finally seen what she's going through. And proof it is. Over the next hour, she has many of the bastard things, usually a minute or two apart, some several minutes apart, some happening twice on the same trace.

Now, I didn't snap them ALL, but I did take some pictures. Hey, I was bored and trying to stay awake. But I got some of them!

The normal "little" peaks are Kellies "normal" heart beats, pumping away like a little, er, pump. The big peaks with the big drops - THEY are what are causing the problems. Every time it happened, Kellie felt it, felt a bit wonky, felt icky, sick, all the rest of it.

They are NOT right, and they are NOT normal.

These are just a few of them we saw. And yes, her heart rate is wonky to, ranging from 60 up to 90 in the space of minutes or even seconds.

After a while, our lovely doctor came back in. She had been talking with the Cardiology department, going through Kellies previous results, and checking the 6-day trace she had done. They decided that yes, there were these anomolies in that trace, but they were very few and far between.

NOW, they are happening on a regular basis, which means it has gotten worse and needs some sort of attending. The Doctor explained it is NOT Atrial Fibrillation (which is mainly for old people!), but a Ventricular Eptopic Heartbeat. Basically, her heart is beating in the wrong place, at the wrong time.

So, she has prescribed her Beta-Blockers which will regulate her heart beat. She now has answers as to what has been going wrong for so long. She has a longer-term plan of getting through it. Her Lipid doctor will also be referring her to the Cardiology Department to get another checking out.

Aside from the stress, the hassle, the shit, the grief and the worry of today, Kellie finally has answers as to what is wrong, and how to make it better. Reading up on it, it's not a great thing to have, it's not the best thing you can deal with, but it's treatable and managable, so it's not too difficult.

Now, I KNOW some of you have or deal with Eptopic Heartbeats, please feel free to mail me, Facebook me, Tweet me or contact me - ESPECIALLY if you have Ventricular Eptopic Heartbeats.

A VERY big thank you to those keeping my company via text, those that were sending their love (I didn't tell everyone, you didn't miss it) and a big thank you to James for rushing her up to A&E.

And apologies to the Asda worker that had to replace all my shopping that I threw into the corner when I ran out.

It's About Time

You are correct. The time-stamp on this post is indeed around 0430. Not only am I awake, but I am also showered and dressed. I've even done my hair. And I've been awake since just after 2am.

Which sums up this post, which was going to be a "So, how am I doing" kinda post.

From sleeping, to daily life, to getting on with life, to doing normal life stuff - everything is a bloody struggle.

My insomnia is still kicking me three ways to Sunday (and I don't sleep Sunday either) and I get more and more tired, until I crash out mid-afternoon on the sofa, get woken and put to bed in the early evening, and sleep right through till mid-morning the following day. The last couple of nights, Kellie has been having nightmares, fidgeting around, muttering in her sleep and generally NOT sleeping well - which has, in turn, made me sleep less-well.

I highly believe she is giving me a taste of my own medicine, but she claims not to be... But the jury is still out.

Pain-wise, my patches are kinda sorta working still. I say "Kinda Sorta" in that I am still in pain, but it is mostly manageable, providing I don't do very much at all. Which is to say, I still can't not do very much at all. Things need doing, stuff needs tidying, housework needs ploughing through, people need feeding... The "Don't Do Much" rule is so difficult to enforce, so I just sort of get on with it.

Which sucks.

Moods are still all over the place, some days I can be happy and cheery, sometimes completely paranoid, other days I just want to kill someone, and others I just want to sit in bed and sob - which I can't do, as I don't have the time to just sit. For the most part, I put on my happy face and go through life as normal... Unhealthy, maybe, but I can't just fall to bits in a corner.

Obviously at this point, it goes without saying that clearly my therapy is not working. I am also refraining from being completely honest about my physiotherapist and his plan for me, but needless to say, from second one of meeting him, he did not like me, spoke down to me, treated me like something he had stepped in - so all respect for him and everything he had to say went straight out the window. His Gradual Exercise Therapy plan can shove itself up his arse, frankly. I've tried it, it made me feel like complete shit, but if he's not willing to listen and just disregard me, then so be it.

Lucky for me, the few people that have stuck by me through the moods, the moaning, the miserable days - those that haven't just disappeared or decided we can't be friends for whatever reason - thank you. I know I am not the easiest person to get along with some days, and I know that my behaviour or actions might seem like I am just being a complete dick sometimes, but those that put up with it, listened and understand, they are the ones I want around me anyway.

Quite how Kellie puts up with it is beyond me, if I am honest. Quite often, she gets in from work, and because I'm having a shit day - either physically or mentally, or both - she ends up having to sort the kids out, cook dinner and look after me too, all after a long stressful day at work. She's my little star.

And it doesn't stop there... Because MY medical stuff isn't all she is dealing with... No no, she has her own fun mixed-bag of crap going on too, which has also been stressing me out...

You may recall her being ill in the past. First off, her chest/heart going wonky, causing some of the symptoms of a heart attack. Secondly, you will probably remember her Triglyceride milarky - the different kind of cholesterol in your body... Well, back then a "normal" reading was around 2.0, and hers shot up to 21-point-something. Oops, bad.

She was thrown onto all kinds of medication, some of which made her go all strange and odd and funny, so they changed it, and over the following months, her Triglyceride levels slowly came down.

Then - because she's a woman and knows best - she decided she was cured, and fixed and better, and stopped her medication.

A few weeks ago, her chest was going mental again, really screwing around.. So the GP sent her for more blood tests, and that very same day the surgery called, she had to get there NOW. After work, she trundled to the doctors, and low-and-behold, her triglycerides had shot up again, breaking the 21-point-something record, and now at 27-point-something-else.

Oops, MORE bad.

So, a rushed appointment to a lipid specialist was booked, and we sat down to see her and work a plan of action. So we're sat in the hospital, and the following conversation takes place:

Doc: We need to get this down now, because quite how you've not had a stroke or heart attack is beyond me.
Kellie: Ah.
Me: *glares at Kellie*
Doc: And you know, being diabetic makes this worse too.
Kellie: *blinks and looks at me*
Me: *blinks, looks at Kellie, is about to go off on a "Bloody hospital has the wrong notes" rant*
Kellie: *cutting me off* But I am not diabetic.
Doc: *flicks through the notes* Yes. Yes you are. Your blood tests show it.
Kellie: Ah.

Basically, we've gone into hospital with a list of problems, and she has left with additional problems.

And more medication.

She also got told off for taking herself off the medication. Long story short (too late) the meds she is are, she is on for LIFE.

I am also quite sure and of the opinion, that the fact such a high level of stuff in her blood can cause heart attack or stroke, I suspect this is the reason for her wonky heart stuff. The doc has put down the Triglycerides as a Familial problem - even though no one else in the family has it, as the doctor said, it has to start somewhere. So a genetic cock-up is to blame.

Which also means Dom & Molly need to be tested too.

 Yes folks, it is all fun and games in this household. Today and tomorrow, the six of us are getting our eyes tested too... Place your bets on how many additional people will require glasses by the end of the week.

Drink & Drugs

Since my doctor started me on the buprenorphine painkiller patches, I've been a good boy. Not only did he tell me "You really must not drink while using these", not only did the sheets of information state in bold "Do NOT drink alcohol while using BuTrans patches", but also, every information website about them clearly states "Do not drink alcohol while using this product"

OK OK, I get it. Don't drink.

Not that I was a regular drinker anyway, mind you, but when I did drink, I could drink a lot and be fine and dandy. So, new meds, no-drinky.

However...

Last night, me and the girls (Kellie, Mo & Tam) decided to go out for a meal. The boys were off gallivanting with their respective friends, so we thought "Sod it" and off we went.

And it was lovely, the food was great, the atmosphere was great, the company was... OK, the company was two girls that don't shut up, so Kellie and I couldn't really talk together much, but it was lovely all the same.

Around came the dessert menu, and for some reason, I really really really fancied a Baileys Latte. I've not had any alcohol for... Three? Four months? It's been an especially shittycrappyarsehole of a week, and I figured, it's ONE drink. So I had a my latte, Kellie had a Tia Maria coffee.

Not long after drinking it, I felt a bit... How to describe it...

Woooooooooooo!

Yep, that is the closest I can come. Things were weird, and wobbly, and swaying. I stumbled and staggered to the loo so I could have a wee, came back to the table, and then...

Er...

It's 4am. I'm in bed. I'm wearing one sock and my boxer shorts. I am cuddling a pillow from the sofa.

I don't remember leaving the pub.
I don't remember coming home.
I don't remember that we (apparently) sat on the sofa for a bit.
I don't remember that I had to go down the stairs on my bum.

This morning, Kellie thought it was HIGHLY amusing that I had no recollection. She pointed out that I've got a bump on my head from slipping and headbutting the wall outside the pub, and that, for reasons I cannot explain, I did this:

I have no idea what that is supposed to say. I don't remember doing it. The three people tagged in that status are Kellie (who was in fact present); Jaysen, who is on the faaaar side of Basildon at his friends house; and... my cousin Hayley... Who is preggers, was probably tucked up in her bed with her future hubby on a completely different side of Basildon.

Quite why I tagged those two, I am not sure. Quite what that status says, I am not sure. According to Molly, who thinks it is highly amusing, she was sat beside me when I did it, and after I wrote it, I said I was "trying to press mums face for my facebook" apparently.

And all this came from one measure of a not-especially-strong alcohol. And one especially-strong drug.

Moral: Dan will NOT be drinking alcohol again, especially out in public. No, not even for the entertainment of others.

Who Needs It Anyway!

Sleep has never come to me in a particularly easy fashion, and if you've been reading 0ddness for any length of time, you will realise that I am an insomniac on a grand scale.

Since having my meds changed, I was kinda-sorta hoping that sleep would just "happen" and that all my woes would come to an end, but despite the patches working better than the tablets, sleep still eludes me.

We can go to bed at any time - usually, if Kellie has work, then we're in bed at a reasonable time, anything between ten and eleven. If there is no work on the cards, then we can still be up past midnight. These times are - to me - reasonable.

However. Regardless of going to bed at 10pm or 1am, the same thing happens. I lay there. Some nights I'll go to bed and read, some nights I'll go to bed and be so damn exhausted, I'll just flop onto my side of the bed, and other nights, I might potter around on my phone... Catching up on Facebook or Twitter, maybe play a game for a little while.

Then I'll get bored, be distracted by my exhaustion and start to settle down. During this time, I adjust my pillows, the duvet, how I am laying, how Kellie is laying, decide if I am hot or cold, fidget around and generally screw around trying to get just "so" in order to sleep.

Conversely, Kellie will lay down, close her eyes, and can start to snore within minutes of getting into bed. She can be snoring while I am still adjusting my pillows!

Once I am in a decent-ish position in bed, I can just lay there, staring into the darkness, my mind wandering around at it's own speed, trying to figure out life's greatest mysteries... Do penguins have knees, What's the speed of dark, Do I have perfect colour-vision and it's everyone else that is wrong...

I can be laying there - and generally do - for anything from an hour to the entire night. Sometimes I doze off for an hour, then wake up - and start over trying to get comfortable. Sometimes I can sleep for a couple of hours here and there...

Eventually, tiredness wins out, and I usually fall asleep between five and six in the morning - usually within the time-frame of "Time for the house to start waking up!" and I have weird dreams, and am disturbed regularly.

Lately, however, things have been all over the place. After finding a couple of people peering in through a window, Kellie believes that any sound she hears in the house in the middle of the night must be a burglar. It doesn't matter that there are also anything from two to four kids in the house, not to mention two virtually-nocturnal cats... No, the sounds upstairs MUST be bad-guys getting into all our stuff.

So Super-Dan has to go and investigate. Once out of bed, my "Getting Ready For Bed" stuff has to start over from the very beginning.

Other nights, it's been Kellie vs. The Bad Dreams. Bad Dreams that involve her fidgeting and twitching and thrashing and lashing out (at me) until she wakes up, and needs to wake me up for a cuddle. A cuddle that means I've got to rearrange how I lay so she can nestle into me comfortably.

Which starts me over from the beginning.

The other night too, we had a massive thunderstorm that lasted ages. Thunder and lightning do not bother me in the slightest, and usually I am at the window or in the garden watching it. Kellie, however, does not like thunder, nor lightning. So every time there was a flash, she squeezed me. Every time there was a clap of thunder, she jolted. And needed a cuddle.

See Bad Dreams to see how THAT goes.

And, of course, with Burglars, or The Bad Dreams, or The Massive Thunderstorms, Kellie can't go upstairs on her own to have a wee. So Dan is shaken awake enough to escort her to the loo, wait for her outside, then escort her back down to bed. Once back in bed, I have to go through all the pre-sleep crap all over again - and, usually, decide halfway through all this, that *I* need a piss.

What doesn't help either, is usually once I get up out of bed, that's it, I am done. I do try to get back to bed and back to sleep, but it doesn't work.

We've been so so busy this last couple of weeks, my body is running on fumes before the day even starts. I feel like crap, I'm shattered, and just wish I could sleep. Hell, I wish Kellie would sleep - that'd be a good start!

I'm sitting here, it's 0630, and I've been up and about for two and a half hours. This time, because she couldn't get comfy, was too hot AND too cold, so I moved out of bed, let her settle, and then decided I couldn't be arsed to try and get back to sleep.

My mood is linked directly to my sleep levels, so you can imagine, I am a very tired, very grouchy, border-line-serial-killer... Lucky for humanity in general, I only have one child around at the moment. Jaysen & Tamsyn are at their mums this week, and Dominic is down in Devon for the entire school holiday, leaving just Molly - who is lucky, because she does make a nice cup of coffee.

Which means I will let her live.

Kellie, on the other hand, is having to work - which is both busy and stressful at the moment - but that is a post/grumble/rant for another day. She's doing overtime under the pretence that "Work is Busy" but I suspect it's actually "Dan is Tired & Grouchy, and it is Kellies Fault"

I am hoping to survive the day, and possibly try for an early night tonight... Maybe in about 14 hours or so.

Good luck humanity.

Cloudy

I have no idea what is going on, or whether it's an after-affect of being so happy following the wedding, but things this last week have just seem... hard.

To start with the positive, the painkilling patches I have been on seem to be working quite well. They are called BuTrans, and the main ingredient is Buprenorphine. Reading the literature and information about them makes them seem a little... scary... BUT they are working. I'm no longer taking Co-Codamol which is something.

The side-effects are manageable, and nothing new to me really. Cotton-Mouth, stomach problems, hot-to-cold flushes, plus various other issues - not to mention my skin flaring up under the patch - which has to be worn for seven days. Because I'm a big fat fatty, and because I seem to be doing stuff all the time, I get hot and sweaty which makes the patches peel a little, so we've been experimenting with different kinds of tape to hold it in place. The best so far seems to be a tape called Transpore. Everything else peels off within a short space of time after re-fixing, but the transpore holds for a day and a half at least.

My pain levels are more manageable, back to being below my levels of Functioning/Non-Functioning.

Other than that, everything feels like it's on top of me at the moment. I can't put my finger on any one thing, but lots of things bother me, piss me off, upset me. My energy levels are still fluctuating, so some days I can't do anything where-as other days I can potter around and do whatever I can - till I crash and burn.

Different people have upset me or pissed me off, and part of me wants to rant and rave about it, but I won't. I've kept myself busy, or my brain as occupied as I can when I am feeling crappy, but even then it wanders off and I end up pissed off.

So, I've been doing my own thing, ignoring the people bitching at/about me, not reading through Facebook or Twitter, not posting anything on there, even neglecting my blog - which I am hoping to stop doing. You will even notice the webcam is back on, pointing out the window, watching the world go by...

All in all, I am doing my own thing, trying to keep up with the kids, trying to keep up with the house, trying to get my brain focused and off of things that bring me down. I've spent this morning re-installing Jaysens laptop, while watching Star Wars, while waiting for a delivery (new battery for my laptop! Woohoo!) and debating if I can be bothered to eat or not.

Yes, I am alive, I'm here, and pottering around as best I can.

Relief (Finally)

This last week or so has been somewhat hellish in relation to my pain levels. If you're on my Facebook friends list (and, of course, assuming I've not culled you off in a big clear-up!) you'd have seen me complaining and moaning about how much pain I've been in.

Things this weekend, were not fun. Not at all.

If you cast your mind back to the Co-Codamol Shenanigans of early June, you will recall that I was sent to hospital, and properly told off for the amount of meds I was taking. That is, I was taking a day-and-a-half worth of meds every 24 hours.

For many many months. Possibly over a year.

So, I was firmly informed that I had to watch how many Co-Codamol I was taking every 24 hours. No more than 8, thank you very much.

The downside, of course, meant that my pain levels snuck up on me. Now, I have been on painkillers in some form or another for the better part of 13 years, just so I can function, let alone hobble along at the pace of life that I lead. I am not an addict, I don't have a drug problem: I have a PAIN problem.

I returned to the doc, and his new plan of attack was to stop the Co-Codamol entirely, and put me on a new painkiller, a patch called BuTrans, which contains buprenorphine. To make sure my body didn't spaz-out, he started me on the lowest dose.

This stuff is, by all accounts, quite strong. Not only is it used in patients suffering from high pain levels, it's also used in place of Methadone, to weans addicts off of opiates like Heroin.

Yes, as usual, there are plenty of side effects, but I scan over those unless I feel rough - no point telling myself what IS going to happen to me.

So, Friday morning, I took my last Co-Codamol, Kellie stuck the patch on me, and I waited for... Well, something. Either to feel funny or whoozy, or to feel the pain flowing out of my body.

But nothing happened.

OK, maybe it needs a day or so. By Friday evening, I was in agony. I HAD to take a couple of Co-Codamol as I was on the verge of tears. I didn't sleep Friday night - I was writhing in the bed in agony. Saturday morning, the pain was worse still, so I took more Co-Codamol.

ALL weekend, I've been suffering. Properly suffering. I couldn't get out of bed for a wee Saturday morning - it was a race between my bladder exploding or the drugs kicking in so I could get up the stairs. I've not left the house, not done anything, couldn't concentrate on anything (LESS than usual), been making stupid mistakes, nearly went face-down out the bath, went to bed at nine on Saturday night, eight last night... Monday I was up just after 4am, and sat on the sofa feeling very sorry for myself.

My doc told me it would take maximum 24-36 hours for this patch to start working "effectively" but I thought giving it the weekend was a good run of it. BUT I wouldn't take it off, and wouldn't take my Co-Codamol normally. I put it off and put it off, but eventually, I caved - I needed to see a doctor... I saw a different GP (my usual doc was not in) Monday morning, and he was a little leery to make too many changes to the plan. He could, however, see how much pain I was in which made me feel a little better, as I knew it wasn't in my mind.

He has me now wearing two-5mg buprenorphine patches, PLUS I get to take my Co-Codamol "as normal" until I see my regular doctor on Thursday.

As soon as I got in, I took off the existing patch, Kellie reapplied two patches to my back, and I took my Co-Codamol. After a couple of hours, I felt rather drowsy, and was in bed at 8pm, and flaked out pretty quickly. During the night, pain kicked in again, and I was restless, fidgety and suchlike, and eventually got up at six.

I DID feel a little better this morning... Still in more than my "normal" pain, but somewhat more bearable. I had to suffer through a bus ride, as this morning was my therapist with the CFS/ME service. Explained to her what's happened this week (and in general) and she thinks that it could be worse due to the amount of stuff that's been going on this last month or so that has fully exhausted me. BUT, on the bright side, she thinks I need to get another referral to Pain Management ASAP.  So on Thursday morning, I have to ask my normal GP to refer me, and to check/increase my buprenorphine dosage so I don't have to rely on Co-Codamol as well, plus I "should" ask for another blood test, just to rule out anything else that may be going on.

I'm happy to report that, this evening, the pain is a little better than it has been - it's still above the levels that I am used to, so I am suffering a bit, but it's better than it was. Which is saying something. At one point over the weekend, I considered cracking my head into a wall to knock me out - just so I could get some rest...

Desperate times, and all that...

I just wanted to say a quick thank you to everyone that has been putting up with my whining and complaining via Facebook these last few days, and for offering support or just generally nice words to push me through it. And, of course, for Kellie, for coming to the doctor with me, for looking after me, and running around after me all weekend.

Hopefully I will have even better news on Thursday morning with stronger meds!!

Med Change

As mentioned on Facebook yesterday, I have started on new meds... Allow me to back track "a little"

Many years ago - eight or nine - I was referred to the Pain Management clinic. Back then, I'd already been told my pain was psychological, in my mind, not as bad as I made it out to be, and part of having a degrading spine. The very helpful *cough*UselessTwat*cough* changed my meds from one containing codeine to another...

Containing codeine.

Very helpful, and the difference was the same as when you try and explain the difference between Off-White and Eggshell-White to a man. Especially a colourblind man. Ultra-especially a colourblind man that dridn't care about the different between Off-White and Eggshell-White...

And there I've stayed, with cocodamol as my base drug for "breakthrough pain" Over the years, my doc has experimented with the right drug for managing the pain over time. I've been on things like Amytriptyline (and I remember some very loopy blog posts while high on that car-crash of a drug) to Tramadol to Diclofenac and Pregabalin.

Nothing really does a lot, and after the minor mishap a few weeks back which, I've been told was called a "staggered overdose" I've had to lower my cocodamol intake. The downside of which is that my pain levels have gone from "barely managed" to "through the f$cking roof"

So last week, Mr GP decided a new radical approach was needed. And my cocodamol was stopped, and replaced with a patch... The drug in question is called Buprenorphine, and is very similar to morphine. It's used in cases of high to severe pain, and comes in three doses, 5mg, 10mg and 20mg.

Of course, with my body being a twat and usually churning out as many side effects as it can in  reaction to new drugs, the doc has started me on the lowest dose. The patch delivers 5ug (micrograms?) an hour over a period of seven days. I'm to use this patch for a week then, assuming there are no side effects I can't deal with, next week I get to apply two patches.

Now, it's supposed to work within 12-36 hours, and here were are, 38 hours in. And there is nothing positive going on.

At. All.

So I'm reducing the one painkiller that generally stops me writhing in pain and sobbing like a baby, so another medication can take over. Another painkiller that is not actually doing anything.

At. All.

This weekend has been shit. With a capital S. And H. And I. Yep, and T. I'm laying here at midnight Monday morning and just want to crack my head into a wall in an effort to pass out.

Tomorrow morning, I'm going to try seeing the doc. There is no way I'm going to make it through to NEXT weekend, especially on the off chance that the patch might do nothing at all.

Don't get me wrong, I'm hopeful it will work, and would be over the moon if it meant I can cut out an entire batch of pills, but I need it to work. I feel like complete and utter shit, and can barely function.

But you know, it's all in my mind, a psychological pain, I'm just addicted to the drugs, and am faking it just to get out of work.

I'm hoping that when I wake up in the morning, things will seem and feel better. I'm hoping that, in light of the fact it's been rather manic and full on the last three weeks, I'm hoping it's just taking a little longer to get into my system.

Fingers crossed please. And whatever else you can send for luck...

In other news, my Facebook cull appears to have been a rousing success. If you are no longer listed as a friend, it's because there was no interaction between us on there whatsoever. I'm not having people on there from now on that just add me to have me count towards a Friend Total that means bugger all. If you want to have me as a friend, a chat or poke every now and then would be nice!

I'm considering a Twitter, Email and Mobile Number cull as well... I'm tired of fighting and struggling to have conversations with people that seemingly don't give a crap.

Yes, I know, I'm in pain, I've hardly slept, and I'm proper grumpy. I think I'm at the point where the naysayers in my life are now going to find out who they are. Want to accuse me of faking, see ya later. Want to tell me I should "think positive and I'll feel better", adios!

Those of you that chat with me, laugh, joke and take the piss out of one another, you're safe ;-)

Watch this space... I'm sure I'll talk about my Buprenorphine patches (BuTrans) later. Positively or Negatively, however, remains to be seen.

Paranoia

I'm not sure when it started, I'm not sure why I am like it, but like the title of this post says, I suffer from paranoia.

Now, I am not sure if I have mentioned it before now or not, but for my ME/CFS, I have to see a therapist. I am not sure how well it is going, but if I am honest, I don't like it (especially as I hate talking to people I don't know) and I am not convinced it is actually doing anything for me.

If anything, I usually feel worse after my appointments. And on top of feeling crap, I usually come away with what I call "Homework" in the form of lists, exercises, and tasks. All this despite the fact I struggle to read new information, I struggle really hard to take in new information, and I end up confused, angry or just at a loss as to what to do.

But I digress.

I have lots of 0ddities, lots of strange nuances, and several OCD aspects. None of them particularly bother me. Others find them amusing. I don't mind that others find it amusing that things have to be just "so"

So, me... Paranoid. I'm not going into anything else about me - that's a story for another time.

The stuff that goes through my head is usually strange and pointless, and there's no reason for it, but the things that end up playing on my mind have - this week - driven me to distraction.

Now, I should add at this point, I am writing this late Friday afternoon, but it won't publish till Sunday afternoon. My reasoning is simple: tomorrow (and I've not advertised it) Kellie and I are getting away for a short break. My brain however, has come out with so much crap regarding this weekend I needed to blog it out to try and clear my head.

Reality: The 0dd Mother in Law has paid for us to go away for the weekend. It's a much needed break that I have been looking forward to for ages. I have not escaped "life" in a very long time, and while it's only two days away, it's time away from everything. We get to stay in a little Bed & Breakfast, wander around somewhere different, have an evening out, sleep away from home, have breakfast, a day wandering around and exploring, then come home.

My Brain: This weekend is either: Kellie is going to tell me it's over, it's done, it's finished, or; Kellie is getting me away from the house and everything, as people are going to be moving all her stuff out, and we're going to come home, then she's going to tell me it's all over.

Now, logically, I am fairly sure my brain is just being a twat. Logically, the things we've been doing the last couple of weeks suggest that, in fact, NO, she's not about to say "See Ya!" and pack everything up and shift off.

Unreasonably, stupid little things that have gone on - things I KNOW are actually nothing - have lodged into my brain, and that stupid voice in my head has taken them and run amok with them. On top of THAT (as if it wasn't enough) the slightest stupid thing throws me off balance. Someone doesn't reply to a text: They hate me. Someone asks a question about how I am: They are questioning how I actually am. Someone talks about money or jobs or similar: They are digging at me not being able to work... And so on and on.

That's what my brain does - it takes the smallest of things, rearrange the facts so they are still correct but alternative versions of correct... Which I hate. And I try to ignore it, but I can't understand how to do it.

So why am I writing this now but not posting it till Sunday? Mainly because I am not totally convinced my logical brain is correct. Because the voice in my brain is actually telling me I'm wrong, that it's all going to go pear shaped. So by posting it Sunday, I will be able to read it and remember that I was being a twat and everything is fine. I just needed to get it out somewhere and somehow, and I didn't particularly want to have to whine to the same person over and over and over again about how I am feeling or what my brain is doing... The poor woman gets it plenty, so I figured I'd give her a break. Yes yes, she's probably going to message me and tell me off, but I can handle it - she's far enough away that she can't hit me ;)


Yes, I know, I am a bit of a mess mentally at the moment. I am working on it, I promise, I am doing my best to mute voices, not feel the need to re-arrange peoples cupboards, not wander around the house in the dead of night because I can't sleep, and not expect something to burst into flames at any minute.

And before you say it: Yes, I've tried talking about it (Hellooo, CBT!) but that doesn't make me feel any better - if anything, the more I talk about "How I Feel" the more I sound like I am whining and being all "me me me!" which I hate with a passion.

At least now you know why I am quiet so much of late.

And now, it's Sunday afternoon (as you read this, that is) and I am either once again proved to be a knobhead, or I am single.

Kellie: Still Not Dead (Somehow)

For those of you that have been listening/reading to me prattle on for the last 24 hours, you will know that this morning, Kellie has had yet another medical appointment in regards to her Cardiac Shenanigans. And her Triglyceride Hilarity.

For the previous instalment of "Limited-Days-Of-Her-Life" feel free to read the mini-update in the middle of this post here, or additionally you can see more of her nastiness going on in this post too.

After dragging myself from the bed and into the shower, out again, getting dried and dressed, we trundled out into Deepest Darkest Basildonia. Full of Basildonians it was, too. But we got to the hospital forty minutes early. A nurse called her in and did some preliminary bits, and then they wanted her to have an ECG... For which the nurse made her get completely topless.

Not that I am one to complain, of course.

That done, we went and sat back in the waiting room for ten minutes, and the doctor called her in. At least, *a* doctor called her in. Not the man we were expecting to see, but an SHO - which, of course, was unsurprising. Seeing your actual consultant when it comes to medical things is a rarity at the best of times - as Kellie was walking, breathing and talking (and talking and talking...) she probably didn't hit the flags for seeing the man named on her letter.

The doc we saw (and his two students) was nice enough, and very thorough... However, little dingly-dangly bells were sounding when, despite us being there for Cardiac Arrhythmia, Cardiac Palpitations, and being in the Cardiac Department, the first thing he wanted to know about was...

Her cholesterol?

So - as is the normal for anything long-term-medical in this country - we had to explain what was going on, the last 2-3 years of medical history, things that have happened, doctors and procedures she's been through... BUT, as we pointed out several times, we were here for her cardiac stuff, not her Triglycerides.

Now, I will digress from this point, and go out on a limb and suggest that her Cardiac stuff, and stupidly-high-triglycerides are somehow related. I don't know how, and I am not entirely sure I am certain, but they have been two problems together from around the same sort of time - it was her cardiac stuff originally that prompted a blood test, and that blood test is the one that came back with the numbers through the roof: Her blood test showed her Triglycerides to be 21.6, which, in US terms is (apparently!) over 1900. A "Very High" rating over here is anything over 6.5.

Hence the blood test lab calling the GP directly.

Back to today:

So we tell the doctor about all the Cardiac stuff, and he actually does appear to listen and understand what we're saying, our worries and concerns and everything else. He flicks through the (worryingly) small pile of notes, none of which appears to show the fact a Paramedic attending one of her worst cardiac events, nor did it show that another of these events prompted me to drag her to A&E where the doctor there was more worried she was having a heart attack.

He goes over her ECG - which is, as usual, normal, because as we've told them over and over - her problems are intermittent, not constant - and he agrees with us, and proceeds to order a seven-day cardiac monitor to try and catch it.

At one point he did try to, shall we say, press her into going back onto Statins. Now, I may have mentioned it elsewhere, but not long after Kellie started on these statins, she changed. It's hard to explain how, but she lost interest in things, in family, in friends, in hobbies... Now, despite there being no official link between statins affecting a persons character, a quick search of Google will show countless reports of people suffering the same side-effect. They start the drug, their personality changes, they come off the drug, they slowly come back to normal. We managed to get her off the statins a while ago, and onto Ezetimibe (like a statin, but NOT a statin, and just as good apparently), plus high doses of Niacin which is also very good for combating lipids/triglycerides/cholesterol, and high-doses of Omega-3.

Like I said, he tried to get her back on statins, but she refused - we're not willing to go through that again. So instead, he's stopped the Ezetimibe and Omega-3, and started her on Fenofibrate... And while we're not officially dieting any more, we're going to be back to "more mindful" of what we eat. However, since being back on Slimming World, I do tend to cook most things from scratch anyway - just going to increase the amount of vegetables and oily fish in her diet.

Simples.

All in all, it did go quite well, though I think Kellie was hoping more for "This is what is wrong, this is how we're going to fix it" even though I did sort of pre-warn her this morning to not get her hopes up and that they may not have answers after an Xray, ECG and Echo.. BUT hopefully now we have a doctor that is A) Understand, and B) Paying attention, coupled with C) our GP who is very good anyway, I am pretty sure that we are getting somewhere... YES, it is taking a while, but if this medication reduces her levels better than the Statin or the Ezetimibe, that's one thing... If the reduced triglycerides seem to have a positive affect on her in a cardiac sense, then that shows the two are hand-in-hand. Lastly, the seven-day monitoring she will have (aside from being HILARIOUS for me, and I am sure, for the blokes at work) I am hoping will show the events that she suffers with - the arrhythmia, the palpitations, and what it is - if anything - that is triggering them, then even better.

I'm hopeful that, finally, she's on the right track, and that the meds and monitor and the doctor will make a difference. As a sign that they're not worried about her (like, worried-worried) her next appointment isn't for six months. At least, it SHOULD be six months - however, the clinic doesn't have any appointments till...

July 2013.

Guess who's going to be calling up every few weeks to pester for an earlier appointment!

Big thanks to everyone that messaged in some form or another to wish her well and all the best, and for those of you that have kept me entertained - it's that or have a nervous breakdown!

On Being A Benefit Scrounger

With our government being, shall we say, completely out of touch, more and more of late people like myself have been slapped with a great big tag of being "Benefit Scroungers" or similar.

In May of 2000 - after a few months of getting steadily worse. I was signed off of work. After a few months - once my Sick Pay was used up - I was officially moved onto Incapacity Benefit. A benefit that is deemed as a payment for someone that is sick, but with expectations of getting better.

Twelve years later, I am still getting Incapacity Benefit. I have diagnosis of Degenerative Spine, ME/CFS, Depression, and Anxiety - and the first two, the actual reasons I am properly poorly, are not filed under any section of "You're going to be fine, here's a cure"

Even with my own GP and now my CBT Specialist stating that yes I am ill and won't be "fixed" I am tarred with the stigma of being on benefits because it's easy, pays more than working, and I can live an easy life claiming money from "The Taxpayer"  No, to look at me - aside from a shitty day when I am hobbling around - I do not look sick. If I've had a few days of chilling out, I can chat and have a laugh and seem like a normal person, but after a couple of hours of leading a normal life, I am then wiped out for two or three days.

According to pockets of the population, I shouldn't be on benefits, I should go out and get a job.  "Get over it" and similar.

At no point have I sat here chuckling, watching people going out to work while thinking "Suckers! I get more than you!" You may notice that Kellie works... Why? Because being such a brilliant benefit scrounger, the money I get each week covers precisely shit. Even with her wage, we struggle to make ends meet some months.

But yes, being on benefits is SO much easier. I'm not going to go into how I feel on a daily basis - you can read it in posts like this one and get an understanding of my daily life. I would love to work. I would love to be able to get up in the morning (for starters) and get ready, sort kids out, get to work, spend the day working, get home, sort dinner and the house, and so on. HOWEVER. You find me an employer that is going to be willing to get a call from me saying I can't get my socks on in the morning because my body won't move properly. Or an employer that will accept after three or four hours, I will need to go home and collapse in bed with a handful of meds - not to mention, require the following three or four days off because I can't move or function.

And while we're on the subject of meds, find me a boss that will be willing for me to be IN work, take a handful of meds at half ten in the morning, and spend the next four or five hours spaced out, unable to focus and struggling to stay awake. And I don't mean "I get tired" but I nod off regardless of what I am doing - even if I am stood up.

And let's not forget the time off every few weeks to go to my therapy appointment, or to see my GP about tweaking my meds...

I am so sick and tired of being labelled a benefit scrounger, but I retort with: FIND me this employer. FIND me a job in IT or Customer Service that is prepared for me to be one day then off sick for two or three days.

This government has managed to convince so many people in the country that someone on Benefits is probably not entitled to receive them, everyone is now sure people like me are lazy, scrounging, skiving, cheats, lying about a disease or illness or whatever in order to get money for doing nothing.

And who do the government employ in order to examine people like me? Do they send in health care professionals, trained in the ailment that is troubling someone? Do they consult with the doctor that has been trying to sort it for a dozen years? Do they contact the specialist in the area  to find out how I am affected?

Do they f$ck! They send in people that have a list of questions to ask, a series of "Bend this body part" or "Move this body part" with no understanding of mental health, physical problems or anything else - and they base their WHOLE decision on this one forty-five minute meeting... In 45 minutes, they can tell that I am actually healthy and there's nothing wrong with me. Sod the reams and reams of paperwork at the doctors office they could look at. Sod page after page of therapist meetings. Sod the actual letter from the ACTUAL specialist that states what's wrong and how I am affected daily... No no, 45 minutes is all it takes to reinforce the Benefit Scrounger  label.

I wish I was healthy. I wish someone would give me a job. I wish people would stop looking at me, telling me I don't look sick, I need to get over it, that they pay for me to be lazy and so on.

I am so sick of it. Sick to the teeth of it. Of the labels, the looks, the idiot determining that I am actually healthy, of surviving on f$ck-all money, and mostly, I am sick of feeling like this ALL the time.

As an example - today, I had to have my boiler serviced, so I've been in knots screwing over someone I don't know coming into my house and pulling something apart. I've written a Musical Monday post. I've written this post. I've listened to music.

And yet, I have done too much, I am in agony, stressed out and totally miserable with it all. Find me an employer that will deal with someone in a state like I am, sobbing in pain and stress - but I can't take any meds for another two hours.

But yeah, I'm fine, nothing wrong with me. I'm just a Benefit Scrounger.

To Coin A Phrase (Sorta) Pt. Three

(Part The Third) And so, we reach the more boring post in which I whine about me and how I feel and everything else. The entire post can be summed up as follows:

Wah-Wah-Me-Back-Pain-Wah-Tired-Wah-Mental-Wah-Woe-Is-Me

If you are going to read this post, and are then surprised that all I have done is moan, more fool you - don't bother whining in the comments. That sentence up there is very accurate, and I've not even written the post yet.

Maybe toddle off somewhere else if you don't want to read it.

So, me. Hmm...

As you might have gotten from the previous two posts about Where The F... Have I Been? you will be able to see that I have barely stopped for the last few months. That, however, is a bit of a lie, because I have had moments where I've had to stop for the simple fact that I've had no choice... My body simply won't let me do anything else.

On the pain front, things are pretty much as they have been of late... Lots of pain, nothing in the way of pain relief. Not really. My Co-Codamol/Pregabalin combination does little more than take off the edge of the pain, but it is constantly there, screaming at me in some way or another. Either my back feels like a jumbled knot of pain, my hands, arms and legs range from "Random Aches" to "Hot Fiery Pains" and my neck, elbows and knees seem to switch on and off as they please... Wobbly arms and legs, heavy head... Plus a few migraines thrown in for good measure - one of which saw me puking in the 0dd Mother In Laws toilet. Which was mortifying, FYI.

It hurts to move around, to walk, to carry, to do stuff, so I have to limit what I can do - which I REALLY do not like. I know, I know, there's nothing for it, I HAVE to limit myself, but I don't have to like it.

You name it, I have been having problems with it, from walking and going out, to concentrating on, say, reading a book or watching a TV program... The pain just messes it all up.

On top of the pain, there is the tiredness, no, exhaustion. I don't feel "Oh, I had a late night, I feel reeeeally tired" tired, but "I've been running the London Marathon every day for the last six months, I am knackered" tired. I've been struggling to stay awake most of the time, get into bed, doze off, wake up an hour or two later, then fight between sleeping and not sleeping, and when I DO finally doze off I either A) have shitty dreams that wake me up and prevent me from going back to sleep, or B) managed to fall asleep 30 minutes before the alarm clock goes off, and have to get up regardless.

I am hurting, tired, miserable and completely fed up with everything. And for added fun and adventure, I've been struggling with words and sentences, either failing to find the words I want outright, or my brain throwing in random words that have NO bearing on the conversation, or even better, talking and slurring and sounding like I've been on the booze all day - which is worse when having to talk to strangers, as they look at me like I'm one of the local alcoholics... Now, if I WERE one of these chaps, fair enough. However, to judge me on the fact I SOUND like one really pisses me off. I want to get a tee shirt made that says "I may sound like I'm drunk, but I'm not. You're looking at me like you're a judgemental twat, and you are."

On top of this, I started with my specialist counselling, and have had two sessions so far. I don't seem to have done a lot in either one mind you - the first I walked away with two wads of paper, one on "Sleep Hygiene" which she gave me and after I told her how many years I've had issues sleeping and what I've done to try fixing it, she told me to read through it, not that it's worth it as you probably know it all anyway. The second sheet was "Identifying and Working Through Troubling Thoughts" and about twenty pages long...

I will confess to you - as I told her - every time I started reading it, my brain shut down, and refused to process it. There was so much in there that just didn't make sense, my brain could not take the words and put them in any order that I could understand.

My second session, she kinda just let me... prattle... By the end of that, she decided I have traits of OCD that need to be worked on (!!) and that she would like to talk about the sorts of bad thoughts and worries that I have on a daily basis. She also wants to understand my activity levels and what I am doing, to see if I need to do more or less, and learn to pace myself...

I DID point out that I have kids and Kellie works, so pacing is not always an option, but I don't think she understood...

I have never been one to think counselling was any use... I am attending anyway just in case she CAN help me and make me feel better, but my breath is honestly not held.. I know there are some of you that have been through it and it has helped or even worked wonders, but I struggle to talk to people I know and love about my problems - talking to a complete stranger is very very difficult for me.

The only ray of hope to come out of it was a new medication! Yep, after realising how much I do (or, rather, do not) sleep on a nightly basis, she recommended I be put on a trial of Melatonin - basically, the hormone that makes you feel tired and puts your body to sleep - That, in tablet form.

It says to take an hour or two before bed, so I took it at 9pm the first night, thinking, even if it takes two hours, 11pm is still not too shabby. By half nine, I was drifting off to sleep, got comfy and snuggled down...

And was wide awake again at 1am. I dozed on and off all night that first night. The second night, pretty much the same story. Night three was the night Kellie decided to be sick and have her heart conk out. Nights four and five, I kept waking up to check she was still alive.

Since then, I take the tablet, doze off within an hour, and have 2-3 hours of sleep, before waking up, and then struggle to get back to sleep or even stay asleep.

So that's either going to be "Dose Increase" or "Back to the Drawing Board" for that one.

The last two or three days, however, I have felt like sh!t. Proper, full-on crap. I've been in agony, have no appetite, am exhausted, have struggled to get out of bed - Thursday and Friday mornings, Kellie had to get up and sort herself for work AND the kids for school, as I could barely move out the bed. Friday morning, I struggled up at half eight, said goodbye to Kellie, went to the loo, fell back into bed - and there I stayed, dozing on and off till 1pm... And even then, I had to get up as I needed a change of scenery...

So, as I said in the first paragraph:

Wah-Wah-Me-Back-Pain-Wah-Tired-Wah-Mental-Wah-Woe-Is-Me

To Coin A Phrase (Sorta)

(Part The First) If the young hip, cool and trendy sorts - with their portable telephone language - are to be believed, the letters "WTF"mean What The F... Well, you know the rest.

However, a better use for it would be WHERE The F.. er... heck... As in, where the f... have I been...?

The easy answer is probably "You know... Stuff." but that would be a pretty shoddy blog post on my part. Yes, granted, aside from one yesterday, I last posted in the Bronze Age or something.

However, the "You know... Stuff" answer isn't going to cut it with some of you, so I suppose I should flesh "stuff" out for you a bit more.

In an arse-about-face way of story telling, I will cover the important stuff first - which, as it happens, is the more recent stuff - and then get to the less important stuff, such as me droning on about me.

So, the important stuff: Kellie is a poorly girlie.

As you may recall back in the Bronze Age (or whenever it was) Kellie developed two interesting "issues" The first was a very random and apparently very Cardiac-related issue. Her heart would suddenly speed up (tachycardia) or beat in a wobbly out-of-time way (arrhythmia) and, either way, it made her feel like shit. Her previous GP was very much "Meh" and after much threatening persuading, referred her to her then-local hospital cardiac unit.

If you were reading back then, you will remember Kellie became part-cyberman at that point, and had wires and electrical things stuck to her body to record her heart for a few days. Then-local-hospital looked at it, noted that it hadn't recorded everything, and effectively sorted her out with "LOL discharged anyway! Get over it KTHXBB"

So she did her best to get over it, but it sort of became a part of who she was. Er, is... Either way.

The next issue that suddenly became interesting was her Triglycerides. If you recall, a normal person (ie, me) has a triglyceride level of 3.0-4.0, and a HIGH reading is considered to be around 5.5. Kellie, on the other hand, cracked off an impressive 20.8. It was so bad, the GP phoned and told her to get her schexy behind into his office, where he threw medication at her, put her on regular blood tests, and started monitoring her carefully.

The medication was Statins, and it wasn't long after her starting them that her personality changed and shifted and she effectively became a different person. We spoke about it at length many times, and even though her Triglyceride levels were coming down, eventually after much Umming and Arring, she decided to go down an alternative path and try different (NON Statin!) medication.

[I should add, side-note: Seeing what they were doing to Kellie, I researched Statins and with a little help, have found out that they're a pretty shitty drug. MANY people have reported personality shifts and mental changes, and none for the better. Kellie personally lost interest in everything, including family life, arts & crafts and life in general. Within a week of stopping them, she was already on the road back to being Kellie again.

Back to the story...]

However... Even though her numbers never came down to normal, they HAD come down from the 20.8 to about 6 or 7. After changing her meds and having a blood test, the doctor phoned again, and back she had to trot... They had shot back up to 16. Oops. So, she's on different medication for all that now, and hopefully it's doing the job...

And that's not even the worst of everything - there was a reason I mentioned the cardiac stuff... See, last week, Kellie felt a bit rough on Tuesday, and over night Tuesday into Wednesday, she was very poorly. Her heart was running at a million miles an hour (true story), and sometimes it was speeding up, sometimes it was nice and slow, sometimes it was thumping like it was trying to escape. On top of this, she felt - and these are her words, not mine - like her chest was being crushed like someone was sitting on it, plus she had pains in her chest, up the side of her neck, and down her left arm.... I know, right!

At one point, I considered calling an ambulance - THAT'S how iffy it was.

Wednesday morning, she gets up and starts getting ready for work, but ho-ho-no-you-don't luvvie. I call her boss and explain to her what's gone on, and lucky for me, Sue (while a bit unhinged and obsessed with snogging me) is brilliant and very understanding. So, kids are shipped off to school, I call a cab and take her up to A&E (ER for you non-normal sorts) for someone to give her a good kicking.

Triage whips her straight in, take blood, have a poke and a listen (or copping a feel) and took an ECG as well for good measure - plus for comedy gold, he stuck a cannula in her arm too... I knew exactly what he was looking for, and when he said "Cardiac Enzymes" I knew he was looking to see if she had had a heart attack.

So, deciding the last thing someone with a wonky heart needs is to be stressed out is, you know, more stress, I keep that little tid-bit of info from her. Thankfully on Monday, she was given a prescription of GTN which I suspect the doc gave as a "Just In Case" measure - so I had her use that too over night which seemed to ease things a little bit.

From Triage, we were seen fairly quickly by a Doctor who checked her over, went over her history and asked everything he could think of asking. He gave her a very good examination (copped a feel) and decided to get an Xray too.

It was at this point we discovered a new, interesting hospital policy. Women requiring a chest Xray have to be stripped and in a hospital gown. Now, at this point, Kellie is tired and exhausted, pissed off, has been poked, prodded and had her feels copped several times. To have a stroppy, moody, jumped up Xray tech get shirty with her was the final straw. She refused to change in a normal place (Ie, somewhere for lay-dees) and stomped into the nearest mens toilet. When she came out she looked...

Well...

Now, were I capable of running, I would show the world the photo I managed to take of her before she inserted the camera where the sun doesn't shine, but for now, I shall hold on to that image for blackmail purposes.

With her Xray done, and her changed back into normal clothes (changing, this time, in a Disabled Toilet!) the doctor went through her blood results, her Xrays, her ECG and everything else and was very happy to tell us it wasn't a heart attack, but said it really sounded like a nasty arrhythmia. Lucky for us, the GP has already referred her up to Cardiology...

With everything being happy and hunky dory, we were able to go home, where, upon sitting on the sofa, she promptly flaked out, snoring and drooling in her own special way.

Sue called that evening to see how she was, and SE decided Kellie wouldn't be in work, and again, Friday morning when Kellie decided she WOULD be in work, Sue told her in NO uncertain terms that she would NOT be in the office, and she would get in trouble if she did show up.

So she got out of her work clothes, and back into her PJs.

She's still poorly - we couldn't go camping this weekend because of it which pissed us off - but walking up stairs is knackering her out, christ knows what roughing it would do to her. Plus, with it being my birthday, she's been co-ordinating the troops, friends and family around me, and as of 11pm last night, she reached the bottom of her little energy barrel, and has stayed put since. Today, she has mostly been slumming it in joggers and vest top.

Cardiology appointment: 9th November.

And so ends Chapter One of Where The F... Have I Been.

Well That Took A While...

It has been noted by some (*cough*many*cough*) that yours truly has been missing in action for a while. It's true that 0ddness has not been updated for most of June, and to be honest, my excuses - now I've arranged them in my noggin - sound, well... feeble...

Mainly, I feel like shit. Proper It-Hurts-To-Do-Much-Of-Anything shit. Like a good boy, I take a cocktail of drugs in the morning, and I take my scheduled drugs in the afternoon, and my handful of drugs at bedtime. Plus, during the day, I am popping painkillers like they are M&Ms. But they don't seem to be doing much of anything. I get out of bed and am in pain. I potter around the house, and it hurts to do so, thus increasing the pain. I try to do "normal" stuff, and it hurts, increasing the pain. I flop on the sofa to chill out, but can't get comfy so fidget around a lot, which increases my pain. I go to bed, and the pain stops me from sleeping properly, so I fidget more and don't rest.

When I DO sleep, it's broken up by pain. So when I get up out of bed, I am in pain.

And the cycle begins all over again.

I've tried those very helpful bits of advice that many have offered of "Push Through It" or "Focus On Something Else And Ignore It" as well as "Get Over It" but aside from just being completely bloody moronic, all those bits of advice do is make me worse. I grin, bear it, grit my teeth, push through the pain - and end up making myself feel a million times worse for longer.

Yeah, THANKS for that advice.

I am still waiting on hearing from someone at the specialist place about my appointment, and if I've not heard anything by Wednesday, I am going to give them a tinkle.

On top of that, I am not sleeping properly again. Partly, over the last couple of nights, it's because the bedroom is silent where Kellie isn't here - as mentioned previously, she is with the 0dd Brother In Law down in Devon - so it's just me and Dom here this weekend (and into the week too).

As mentioned before, thanks to being in pain, I am struggling to get comfortable at night, and thus struggling to sleep properly. Disturbed sleep, more than insomniac sleep I think. I am waking up really early, and staying awake, after not sleeping very well during the night. It doesn't matter if I go to bed at 10pm or 1am, I automatically wake up at 0430 for NO reason at all, and stay awake. I then find myself nodding and fighting my body shutting down between 1pm and 3pm, and again at around 8pm...

On top of this, I don't feel like I've stopped of late. There always seems to be something that needs doing, something that needs sorting, somewhere that needs visiting... Monday is Beavers & Cubs, Tuesday is Fat Club, Wednesday Jaysen & Tamsyn come home, Thursday is Scouts... Then we seem to be doing stuff at weekends, alternate Sundays I have to walk the kids back to Jo. All this, while doing normal usual stuff in and around the house.

The boys - now both being in the realm of "Teenager" have developed this attitude of late that can be summed up with "Someone Else Will Do It" They waltz around asking if their laundry is done, when's lunch, when's dinner... Then when asked "Can you bring a wash load down from your room" or "Do that bit of washing up" it's like we've asked them to eat their own shit. End of the world, huffing, eye rolling, whining like girls... Stuff gets dumped in and around the house and just... left. Their room looks like burglars have been through it. They are now on pain of actual DEATH to keep it tidy, otherwise *I* will clear it up.

With bin bags.

I don't know, maybe I am just tired and cranky due to the pain. I don't know what the hell is going on any more to be honest. Life seems to have caught up, over-taken me, but actually run me over and left me at the side of the road. I want to stop hurting. I want to do something mundane without my body paying me back ten-times over. I want to enjoy life without having to bend over for everyone else.

Selfish? Maybe. Every once in a while though, surely that is acceptable?

As one of my favourite song lyrics goes: "I'm sick and tired, of always feeling sick and tired..."

Medical Updates!

As of the last week of May, I will have been "Off Sick" for twelve years. Twelve years of never knowing exactly what is wrong with me, what is causing my back problems, and all the other issues my body seems to throw out at me - seemingly at random.

If you read back over 0ddness, you will see YEARS of medical updates, all containing aches and pains, all containing frustration, all with various symptoms and problems I have suffered. For years I have fought for someone - anyone - with a medical license to say to me "Here you go, Mr English, here is what is wrong, this is what is causing it, and this is what we're going to do about it."

Twelve years. My oldest child is not long thirteen years old. There's some perspective for you.

Over these years, I have had comments, statements, open mocking, complete disregard - everything, with very few people standing on MY side of the line saying "No, he IS ill, there IS something wrong with him"

Changing my GP a few years back was quite probably the best thing I could have done. My doctor, for want of a better phrase, is the absolute best bloody doctor ever. He has listened to me over the years - even more than you, dear reader - and never once poo-poo'd or disregarded me as a scrounger as some people have done.

Over the years, he has put me through test after test, tried medications on me from a small dose and built me right up to see if it helps. He has researched for me, checked me, listened to me - been a DOCTOR.

As of last week, he has officially decided that I am going to see a specialist. I have to have a blood test, then he is referring me to the Chronic Fatigue/Myalgic Encephalomyelitis (ME) specialist at Southend Hospital. I sat with him last week and told him how bad I have been of late - pain, tiredness, fed up, unable to do so many simple things - and that the Pregabalin doesn't seem to be doing anything for me any more. He went through everything, and decided that yes, there were not real results in the pain killer, I had given it a good shot, but now it was time for the big guns...


So finally, I feel like I am getting somewhere. Do I "want" this? No, not at all. I would rather be a happy, healthy, do-what-I-want-when-I-want kinda person, not wonder if I will suffer for it for the next three days. Do I wish I could pick up a new book and read it, knowing I will take it in, or do I just re-read books I've already read as they don't confuse me as much. But to finally get a reason, a cause, a diagnosis and, ultimately, direct help that I need, then yes, I want this. I want someone to say "Take this tablet, and you will feel better"


Do I EXPECT that? No, not at all. I have friends that suffer from ME, and know there is no magic bullet that will fix things, but to get help and advice? Recognition that I DO have something and am not scrounging off the system like some think, that is a bloody good start for me, thank you.


Downside - I have to have a blood test this week, but this is the one that will show there ISN'T something else going on in this stupid arse body, and they will take me on.


Fingers crossed

Pain Is Boring

 It goes without saying that in general, people don't like pain. I know what you're thinking; there ARE people that like pain; but that's not my point. In general, "people" don't like pain.

I believe I have a very high pain threshold. I have done all sorts of silly things to my body over the years, some self-inflicted, some accidentally self-inflicted, others just the result of various physical forces meeting in the same area as my body and damaging it.

OK OK, most of my injuries over the years are self-inflicted in some form or another. Gravity MAY have dragged me out of that tree, but were I not swinging from branch to branch in the first place...

My point is, is that I have snapped, cracked, splintered and shattered many things over the years. Additionally, I have slashed, cut, torn, ripped and shredded other parts of my person. I have had fluid ooze from places it shouldn't, seen parts of my body that only a doctor tells you exist, and put things inside me that either shouldn't be there at all, or have added too much of something outright.

And, as such, I can take a LOT of pain. I don't enjoy it, but I don't register it the same as "other people"

I do, however, have my limits. There is a big difference, say, between having your leg caught in the bannisters and tearing your tendons, versus a slow, constant, always-there-keeping-you-awake grinding pain in the bottom-middle of your spine. While with the former, I was laid up for a few weeks and hobbled around on crutches, the latter is ALWAYS there, regardless of what you do, how you sit or stand or lay.

And, it would seem, there is sweet F.A that can be done to get rid of the pain.

Now.  Imagine that every day for nearly eleven years. Yep, nice. Hence the title of the post, Pain Is Boring. Some days, I will say "I feel quite good today, I'll do THIS!" and people seem to think that when I say that, I am over it, not in pain and ready to run a marathon. What I mean is, is that I am STILL in pain, and it still hurts to do, well, most things, but it's either decreased a little for today, or I'm just too cheerful to let it get me down.

If you see me mowing the lawn, or hoovering through, or wrestling with children, that again does not mean that I am cured and better. It means I am having to do whatever I am doing and getting on with it as best I can. What you DON'T see, is the fact that once I've mown the lawn, I can barely walk for the next three-four days. What you don't see when I've hoovered through, is the handful of painkillers I have to take so I don't burst into tears when walking up the stairs. What you don't see after I've been playing with the kids, is me having to arrange my pillows just so, so that I can lay in bed and consider myself to be a little more comfortable than before.

When someone asks me "How you feeling?" or "How's it going, everything OK?" I could very well answer with "I'm in enough pain that I want to cry. My legs feel like they are made of molten lead and hurt to move. My hands have the strength of spaghetti, and the pain shooting up the back of my neck is akin to searingly hot needles being pressed into the base of my skull" but I don't. Why? Because that - or something similar - would be my answer every single day. What I do say is "Oh I'm fine, bit tired, but everything is good!" because I am sick of people looking at me like I am whining about it.

And it's not just the pain - it's everything that goes along with it. My concentration levels some days are non-existent. I can watch a movie and not follow it at all. I can read page after page of a book, but not have any clue what I've just read. I sometimes find blog posts saved as draft that I either don't remember writing, or it's is just a completely random rambling mess of words. Other days, my vocal skills are second to everyone on the planet coming joint first. I can't form a sentence, I can't remember words, names, places, times... Last week, I was writing notes for kids to take to school, and three times in a row, I put the year as 1992.  Why? I have no bloody idea. At all. It's like my brain is dozing off, and when I nudge it, it just blurts out whatever it was dreaming about.

I've been asked before if I am drunk while out and about during the day. Some days, my talky skills are not so hot. I trip over words, stumble over concepts, and occasionally slur. I can hear myself and I scream internally as to what the f$ck is going on. Last week, my status on Facebook was "I cannot brain today, I have the dumb" and while it is amusing to read, it summed me up perfectly. My brain is a danger zone some days, and I find myself trying to put the kettle in the microwave, or wondering why the microwave isn't microwaving, only to realise the START button needs poking...

I was talking to Kellie about it this morning, and I know that she understands what I mean and what I say. She knows that if I am talking about my legs hurting, then my legs are killing me. At no point do I ever say "My Body-Part is hurting" when I mean "I want sympathy" because to be honest, the last thing I want is sympathy. Understanding, compassion, realisation that I am in constant pain, but not "Aw poor Dan-Dan" It's very rare that I will change my plans due to being in pain - in fact, I'm not sure the last time I said I can't do something or go somewhere due to my pain levels. Why? Because I don't want people thinking I can't do X, Y or Z, that I'm "Being a wimp" or just trying to get out of doing something.

And therein lies one of my problems... Quite often, I push myself that teeny bit too far, and make myself feel ten times worse for the following week. And while I am feeling like crap, I try to do "little things" that need doing, making my recovery even longer. I find it very hard to say "No" to people, mainly because - and this sounds pathetic - in case they give me that look when I say "No, I can't because my legs/back/arms are hurting"  How pathetic is that? That I make myself feel worse by not telling people I'm a wreck.

Why is this coming up today? Well, last week, I got started on new medication to sort the pain, and I knew it was the low dose, and that it was only a low dose in order to get it built up in my system. "Start with this dose -" Mr Doctor Man told me "-and then in a month, we'll see how it's going, and increase it..." Fair enough - I've been after new painkillers for a while now, and these (Lyrica/Pregablin) are supposed to be very good.  However, less than a fortnight in, I am in a world of pain, and aside from the first two mornings that I woke up and thought "Hmmm, legs are less ouchy", they have done nothing.

Kellie doesn't like to see me hobbling around, wincing and catching my breath doing things like Sitting Down or Opening Doors, so she managed to pester the doctor into seeing me again today. I'm not sure I'm hugely glad that she did because he used two words that, separately, I don't mind, but together, fill me with dread: Blood, and Test.

Arse.

So, tomorrow morning, after having to partake of a ten-hour fasting test, I'm have to have a battery of bloods taken, and he's checking for everything. Electrolytes, Liver Function, Bone (Calcium), Fasting Lipids, C-Reactive Protein, Glucose, Thyroid Disease, Blood Count, plus he's added additional tests; RF (Rheumatoid Factor, to test for some sort of Arthritis), Anti CCP (Another Arthritis test), ESR (Erythrocyte Sedimentation Rate - tests for inflammation, apparently) and Autoantibody Score (I have no idea, prolly reading handwriting wrong!)

Kellie believes they are going to slash my neck and collect the blood in a bucket.

HOPEFULLY these results won't take forever to come in, but looking at it, he's going down the Arthritis route, which is nice... At 35 years of age.

On top of these, the next time I see him, he's going to refer me to the Rheumatologists, and I suspect, Orthopaedics and the Pain Clinic - obviously depending on the results from the bloods. While I am hoping that this is going to get me answers, I'm a little worried that they're going to find something I don't want to know about. I'm a firm believer in "If you examine something hard enough and long enough, you'll find something wrong with it" or, to put it another way, "If you peer at your burger long enough, you'll find that tubes/hair/spit"

On the other side of the coin, what if they don't find anything? Nothing to report, I'm just MENTAL. That's much more comforting.

In the mean time, my painkillers are increased, so fingers crossed the pain is lessened and become less boring. I'm getting fed up hearing my own voice whining about the pain I'm in... In the mean time, this post is mainly for my benefit, to vocalise to people that I lie to on a daily basis.

This post is my long-winded answer to the question, "How are you today?"