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.

When Tiredness Strikes

To say the last few weeks have been absolute f$cking sh!t a bit hectic is putting it mildly...

The details aren't all that gritty - first off, I've been running around like a blue-arsed fly most days just doing "stuff" - housework, kids stuff, cooking, cleaning and so on. On top of all that, I had my second Pain Management appointment where I actually got to see someone trying to help me...

Their plan seems a little arse-about-face if I am honest, but I can see their reasoning. One of my meds, the Pregabalin, is - in my opinion - doing sweet F.A, but in case it IS working, I am not allowed to just stop and change meds.

So to get me in less pain, we're starting by... reducing my meds... Marvellous.

Yes, I get why they can't just stop them (pesky stroke and risk of death and all that) but it isn't any fun for me as I am still in pain 24/7, am still sleeping very very little, and still a moody bastard that everyone hates.

On top of that.

Kellie decided to have one of her Heart-Attacks-That-Isn't-A-Heart-Attack sessions... The day before the Main Event, she was at work and went very wonky. Chest Pains, Left Arm Pain, crushing feeling on the upper body, going a lovely shade of Corpse Grey... Everyone in the office had a flap, plus she got a telling off for not having her GTN spray handy. But, at her insistence, she was fine and that was that, and gradually the pain went away.

Following a bad night, and feeling much much worse the following morning, she did it again. I don't know, maybe as I missed the events at work, she thought she would give me an action reply. Chest pains. Crushing feeling. Left arm pains. Grey ashen colour.

BUT she didn't want a lot of fuss - we've been told many times that it's not a heart attack (despite telling THEM we know it's not a heart attack, on account of her not being dead and all) so instead of dialling 999 and getting an Ambulance out, we opted for the NHS Helpline on 111.

As soon as the woman answered, I explained that we know that despite how it sounds, her symptoms are not her having a heart attack. OK she says. So I go through all of the above, tell her it's happened before, that we know it's not a heart attack, and that we just want a little advice or help or something.

Five minutes later, Mr Solo Paramedic turned up at the door. Oops. You could see neighbours having a nosey through their windows, but I let him in, explaining to him that it's not a heart attack, but here are all the symptoms. He wired her up to the ECG machine and Blood Pressure thingie, clipped on the glowy red finger clip of doom, and sat talking to her.

Funny thing is, she couldn't talk properly as her chest was crushing so she couldn't get her words out and breath very well at the same time. So she sounded like a breathy old lady having a heart attack.

Work with me here love, I'm trying to tell people you're NOT having a heart attack, don't act like you actually ARE.

Her blood pressure was quite high, her ECG was a bit wonky, and her sats were 86-89%.

Mr Paramedic radioed for backup.

Three minutes later, MUCH to my amusement and Kellies annoyance, a biiiig yellow ambulance pulled up behind the flashy-light paramedic car. Out jumped two lady paramedics, AND a trainee fellow, all with lots of kit in tow, and they came into the house under the watchful eye of the neighbours.

The old girl next door popped out, quite worried something bad was happening, so I had to talk to her and calm her down before she needed their help too - she's got a dodgy ticker as well.

With Kellie, three paramedics, me and the two cats wandering around, the downstairs was a weeny bit crowded. Kerry turned up for good measure as well as she was worried too, and Kellie... Well, she wasn't impressed. She felt like shit, and was receiving LOTS of attention.

The four medical people had a conflab, and it was decided that Kellie really really should go to hospital. They had given her GTN and Aspirin (like they do with heart attack and stroke victims) and that eased her symptoms (like it does with heart attack and stroke victims) but told her she really should be checked out.

However, she wasn't allowed to walk out to the ambulance. No, she had to be strapped into one of the special chairs for patients.

And wheeled out on display for all the neighbours to see. Kerry watched too.

Once in the ambulance, we had to sit for a little while so they could be sure she was safe to transport, that her symptoms were a little better, that her ECG wasn't wonky, and her Blood Pressure and Sats were improved.

All were a little better - sats were back into the low 90s, ECG was clear and BP was more normal. And off to A&E they took us. Checking her the whole way, monitoring her so she didn't die and so on.

Once in A&E it was the usual... Sit and wait for a doctor. Go get an Xray. Have a blood test. They also put a cannula in the back of her hand juuuust in case they needed to get quick access for drugs.

Yes, just like people having a heart attack/stroke.

We were in there for hours while she was checked, questioned, prodded, poked and bombarded with Xrays.

The only superpower she developed, however, was "pissed off with being checked, questioned, prodded, poked and bombarded with Xrays" And at no point when she was hooked up to everything and needing a wee, did I turn on the tap and leave the room.

After ALL that, she was given the verdict of "Well, we're happy to say it wasn't a heart attack..."

Er, yes, thank you for that Dr Obvious. "All we can suggest you do is just advise your consultant what's happened, keep your appointments for your Stress Test and Pulmonary Function Test, and go from there"

So once again, no answers, no help, nothing... No, I know, it's not their fault, they can only go by the symptoms - but it would be nice if they could be some help and try working out why this shit has been going on for five years now.

If any of you armchair doctors - no, NOT Dr Google - can explain to me why she gets all the symptoms of a Cardiac Arrest, without the actual Cardiac Arrest, the please let me know so I can go to the doctor, specialist, consultant or whatever and say "What about THIS" instead of feeling like they just throw random diagnosis out and then a few months later, they say "LOL, no, not that"

Anyway... Kellie ended up having the rest of the week off work (They didn't want her there!) and chilling over the weekend.

Which was lucky really as by the time Monday came back around, it was Dom's turn for stuff - even though this was pre-planned shenanigans.

Last year, Dom - being a spaz - hurt his leg playing football. I say hurt, it was a knee dislocation. Lots of pain and crutches and so on. He was checked, told to rest it. A few weeks after that, he did it again because, you know... Spaz.

This went on for a year or so with random dislocations of the left knee, an MRI was done, but nothing mentioned about it, doctors passed it on from GP to fracture to Xray to MRI to Orthopaedics... Eventually - almost a year to the day of its original dislocation - we got to see a knee specialist.

We were in there for a little while, and the only real option was knee surgery to reconstruct the broken ligament... Er.. Broken Ligament?

The MRI from eight months previous showed that Dom had managed to sever - not tear, but completely sever - the ligament that holds the knee cap in place, and also that prevents the joint dislocating at random intervals.

So surgery was booked in - but for AFTER all his exams.

Monday was the pre-op, and with that being all clear, the surgery was done on Tuesday morning. Now, I am not going to go into me vs. hospitals here. Dom, however, held up like a champ, only getting properly nervous when he was being wheeled into the theatre.

Kellie went in with him and was looking after him while he was knocked out, and after that, we had to go somewhere to do something to pass the time - so opted for the restaurant, drank coffee and ate cake, had a wander around, watched the world fall apart via the news on TV...

He was down in theatre for almost two hours - the surgery took just over an hour - and he was wheeled back in from recovery very whoozy and away with the fairies thanks to copious amounts of drugs. Apparently he was in a lot of pain when he came out of the anaesthetic, so they popped him with some morphine for good measure.

The rest of the day he was spent sitting at his bedside, chatting with him when he was awake, chatting to the nurses when he was asleep, reading, playing on the DS or Tablet... Just passing the time - which is a completely different time inside a hospital. Hospital Time is a strange phenomenon, and some of you will understand exactly what I mean!

Because Molly came up from school and sat with us for a while, we decided I'd take her home to get her fed, watered and into bed, while Kellie stayed at the hospital to spend time with Dom.

Within half an hour of me leaving, things took a bastardly but thankfully brief turn for the worst - all the drugs, the anaesthetic, the antibiotics, the three kinds of pain killers - decided to combine into a concoction that made Doms heart rate go through the roof, and to feel as though his lips, mouth and throat were swelling. Luckily, there was no swelling, but physiologically, he was affected, and his ECG, Blood Pressure, Sats and everything else went completely screwy for an hour. Luckily, Doms surgeon was on the ward, arrived and took control very quickly in a manner that kept Kellie somewhat calm...

After all that, Dom went to sleep and was fine for the rest of the night. Kellie got home and was a nervous wreck, and I feel shitty that I wasn't there when things went pear-shaped... BUT he was - and still is - fine. So no harm done.

The following day, Dom was hurting, tired but otherwise OK, and by lunchtime, the wheels were in motion for discharge. He met his physiotherapists, and started doing his various exercises - painful but necessary. His leg has some bolts of some kind in it, holding his new synthetic ligaments in place. The road is going to be a long one, apparently, with lots of physio and rehab for his leg - even now, it's taken him a week post-surgery just to lift his leg.

The wound itself is pretty... Disappointing... He has two, actually, both covered with a dressing the size of a large-ish plaster.

These two pictures show the site of the surgery. The arrow on his shin was done PRE surgery so they remember which leg to poke holes in, and what leg to NOT cut off. The blue lines are anatomical, showing the kneecap, femur, tibia/fibula (spell check update - the bones are Tibia and Fibula. There is no such thing as a Fibia. Apparently, it's an amalgamation of Fibular/Tibia, and MAY refer to the lower-half of the leg, but it not a recognised word. Thank you Spell Check & Google), and where there are and should be ligaments. Probably showing the team what needed to be done...

The next picture is when Diane - the 0dd Mother in Law - came to visit the other night. Dom, who is living on the sofa at the moment, is playing through the new Tomb Raider game. Nanny wanted a go... So Nanny sat trying to control Lara through bad-guy-infested areas involving cliff edges, gravity, rocks and dying. A lot.

I snapped this picture just after she fell to her death again, and Dom is giggling like a school girl... The look on the old girls face is one she shoots me a lot... Sort of.. Dragonish...

So, all in all, the last two weeks have been shitty. I've not really had anyone I can talk to, so been sitting and dwelling and worrying and thinking and OVER thinking and so on... Hence the blog post - I needed to get it all out and deflate. It's helped a bit, but... I don't know.

No, I am not going to go into me or my issues (pain clinic notwithstanding) and am just trying to get on with everything.

Kellie is better - still getting chest twinges - and she's trying to get hold of her consultants secretary to bring her next appointment forward... Dom is slowly on the mend - still on the sofa, still making funny groany noises when he moves, still getting lots and lots of care and sympathy from me... *ahem*...

Other than that, there have been Parent/Teacher meetings for Jaysen & Molly (both very bright, both very smart, both prone to chatter, both could push themselves harder, etc etc). Tam is doing very well too, reading at a higher-than-normal average, but still trying to play the whiny little girl card when she doesn't get her way...

Life is ticking over with what feels like extremely regular speed bumps, but I'm doing my best to push through it and just carry on... I think I need a break from everything to stop it getting on top of me.

Oh, snail...

I feel like I've been doing this post all day - thanks to Dom (aka, Spaz) needing guiding in Tomb Raider... Anyway, this morning while watering the house-plants, it became obvious to Dom and Myself that I am waaaay over-tired, and waaaay in need of getting out more.

The watering can - which was kept in the garden - had a snail on it. A fact I only realised while halfway through the watering. He was sliding around the outside of the can, drawing little trails as he meandered in circles.

And I was talking to him. Chatting away, apparently. Asking him questions... Dom thought I was definitely strange at this point. By the time I was done and put him back in the garden, "the snail" and become Mr Escargot. Yes, I named the snail. And made sure he was released somewhere cool, damp and shaded.

When I came back upstairs, I was talking with Dom... Considering how weird a snail looks - with his eyes on sodding great stalks, those two strange feeler-stalks, bloody great shell on his back, sliming everywhere - what must WE look like to them?

And then I went on to mime a snail, doing a human impression. Dom laughed till he nearly pissed his pants. Me, a human, pretending to be a snail, pretending to be a human.

I'm either very tired, something has snapped in my head, or I need medical attention.

Apparently.

On Being MIA

You may have noticed that things have been rather quiet on the Chez 0ddness front of late. And you may think life is boring and silent. However, if you've read my tired ramblings over the years, you will have come to realise that a quiet Online Dan usually means the opposite in Real World Dan.

And, more is the point, I don't even know where to start, what I can or can't talk about, or if I should warn you, dear reader, that if you don't like me moaning about everything, you may kindly bugger off now.

This last month has had hospital trips, sickness, illness, death, depression, and hard decisions, all rolled up onto five or six weeks of what feels like a constant uphill battle.

To start with, you may recall Kellie having many many medical shenanigans going on in the past. Well, despite the diet change and the medication change, the "it's just familiarial hyper-triglyceridema" is - for whatever reason - getting worse. Worse and worse.

I've said it before but will say it again - average reading is 2. High is 5, and above 5 is very high. Kellies first high reading was 22. She was started on statins which, frankly, messed her up completely. They came down to about 12, but the side effects of the statins were too much to bear, so the doctors changed her to fenofibrates.

Four weeks ago, her reading was 27. Increase in the dosage, stricter diet controls. Last week, her reading was 28.

I'm not going into it on here, but high triglycerides can cause and trigger all sorts of medical nasties, and the best the hospital can do is give her a "priority" appointment, then, which was six weeks away. Between Xmas and New Year.

Clean if the meds to fight this issue aren't doing a bloody thing, then it's not what they are saying it is. It's like me diagnosing your sore foot as a broken hand and putting a bandage on your wrist - it's going to achieve f$ck all.

So I sense the appointment that day is going to be somewhat heated, and making the doctor listen instead of talking over me.

Oh, and out of the blue, they've also decided she is now diabetic.

On my own front, and having one government department tell me they don't consider me to be ill, I've decided to stop seeing my "specialists" at the ME/CFS clinic. Now, before people spout something like "you need to give it a chance" I will point out - I've been seeing them for close to 18 months. If anything, I feel worse and shittier.

For one thing, I completely fail to see how Cognitive Therapy can fix a physical issue. I have a suspicion the NHS think this is all in the mind but won't admit it. In the course of my time there, we discussed self-assertion, dealing with OCD, coping with insomnia, and all sorts of other really reeeeally useful information.

Then there was the physio. In one breath I've got a patronising twat of a bloke telling me to do nothing, then telling me to push myself, then telling me if I over-exert myself, he's going to tell me off.

Er, what?

As I write this, it is just after midday. I've had a couple of averagely-busy days, and I'm struggling to find the energy and drive to get out of bed - not to mention, my legs are in agony, so I'm waiting for my pain killers to do something.

How can I push myself to do a certain amount of exercise when some days I can't bear to wear jeans because they're too heavy?

And the way he spoke to me... I know some members of the medical profession think they're better than everyone, but this bloke... Jesus, what an arrogant, patronising dick.

"If you don't do as I tell you, you might as well not bother coming back to the clinic"

You got it. Twat.

Plus on top of all this I've been feeling mentally shit of late too. So much crap on my mind, gnawing away at me. We go to bed between ten and eleven, and most nights if I'm asleep before two it's impressive. If I sit up till two then go to bed, I'm awake till gone six, so don't bother sleeping. Regards of sleeping till late or dozing off early, I'll wake up every time I need to roll over or get comfy. I'll have horrible shitty nightmares. Cramps will jolt me awake. I'll be too hot or too cold.

And on and on.

None of the meds I'm on seem to be doing anything once again, so it's back to the doctors I go to get a referral back to the Pain Management people, which strikes me as worrisome, as the last two times I was referred there, I had the first "specialist" tell me I was too young to be in so much pain all the time, and he discharged me there and then, and the second "specialist" spent the better part of an hour trying to convince me to go onto medication I knew I was allergic to, and because I disagreed with him, I was discharged as I was ignoring his professional medical advice.

Third time lucky I hope.

So with all that, plus friends going through hell with death and what-not, sick kids, me spending a few days in bed with germs - it went past Man Flu, and became full-on Flumonia - and Kellie being ill and everything else I'm NOT going into, this last month has been a write off.

In fact, I would go so far as to say November 2013 has been a BAD word. The baddest of the bad words. A complete and utter baddest of the bad words of a month.

December had better be decent.

Hi-Ho Silver, Away!

So, after what feels like eternity, I am finally getting my arse back to that lovely place that we refer to as "Devon"

Ok, so it is actually called Devon, but my statement is technically correct.

None the less, in less than three hours, we will begin the trek to the South West. A gorgeous, beautiful place that... Oh, is about it face the brunt of a massive storm.

Should be fun.

We're going for a week, and this time we're taking ALL the kids. Yes folks, I will be trying to control Dom, Jaysen, Kellie, Molly and Tamsyn into London, then on to Devon.

You see why a hurricane-force storm is no bother to me now, right?

I'm using the rule of thumb that an 80% survival rate for them is pretty good, but I'm willing to let that number drop, depending on how good they l are...

Plans for the week include "not much" "very little" and "sod all" but I also want to explore parts of the moors, eat copious amount of Steak & Stilton baguettes, sample the local breweries, and generally be out and about. Pain & Energy Levels permitting.

Usually before I travel for any real distance, I like to take it easy for a few days in the run up, as travelling and me do NOT go well together. It hurts, it exhausts, and it stresses me out of my brain. This week, however, I feel like I've hardly stopped, and even after being in bed for several hours, I'm in effing agony.

With drugs, I should add.

Saturday was a manic bloody day :-(

And to add to my misery, the clocks went back last night (I say last night, I've been awake since half three, it's now half five... "Tonight" would be more accurate) and while people say "Oh this is the GOOD one, we gain an hour" it's actually horse crap if you're an Insomniac. Forward or Back, it sucks when you can't sleep.

Back: You aren't sleeping, it's all shit. And you watch the clock go Midnight, 0100, 0200 then clicks back to 0100, then 0200, 0300... ANOTHER hour of not sleeping!

Forward: You aren't sleeping, it's all shit. And you watch the clock go Midnight, 0100, 0200 then it clicks forward to 0300, then 0400, 0500... An hour GONE that you will never get back and have lost sleep.

But I digress.

As is usual when in the wilds of Devon, phone sign is, shall we say, a bit naff. Inside the cottage and it's three-feet-thick walls, there is zero signal. Zip. Nada. Outside it comes and goes, depending on where I am on Dartmoor. Luckily, inside the cottage, I will have WiFi, so if you want to chat, install WhatsApp.

Side Note: Do not bother with BBM for Android. It's rubbish, slow, doesn't run well, doesn't actually communicate with every BlackBerry user (which is a joke really) and generally sucks. Honestly, if you want something like it on either iPhone or Android, install WhatsApp or Kik Messenger. BlackBerry needs to realise they are past it, over the hill and crap. There's a reason it's popular with kids... Because they should be counted as a toy.

Anyways, yes, Devon.

I'll probably post the odd photo on my blog or through Instagram... I'll have my laptop too so if I'm indoors vegging out, I may even play some Warcraft or Diablo.

Assuming the storm doesn't knock out the power down there which is quite likely, apparently. Sitting in the quiet, by candle light, with nothing to do except read or talk? WOW the kids are in for a shock!



(Posted from my Sony Xperia Z - excuse typos, strange formatting and similar oddities)

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.

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.

A Post Of Mistaken Identity

On many occasions, I have made reference to one of my fun fancy issues... That of the Brain Fog.

I KNOW I get it a lot, but more often than not, when I mention it, most people don't have a clue what I am on about. Confusion, Forgetfulness and Blonde Moments do NOT cover it... And today, I had an immense Brain Fog moment.

So much so, that I was writing an entirely different blog post five minutes ago, until a wee child pointed out the obvious to me.

Being that I am happy to admit when I am wrong (mainly because it doesn't happen very often!) I decided to scrap THAT post, and write THIS post.

My fog today descended while, of all things, I was sat waiting for a bus. Bored out my skull, alternating between "Ahhh this is nice" when the sun was on me, to "Hmm, Brrrr!" when the sun went behind a cloud.

On my right was the following advert:

You might need to clicky to embiggen this to see what I am talking about... However, this is the advert I was sat beside, reading to pass the time waiting on a bus (that was late!!)

So I'm reading, and looking at the prices crossed out beside each item, and then I notice there's a gap underneath each crossed out price...

"Oooh silly Asda, how foolish you are, mw-ha-ha and indeed, haaaa! You've forgotten to put the new reduced price on each item! I shall now photograph this, chuckle all the way home, then mock you for your afore-mentioned foolishness!"

I got on the bus (still chuckling), I got in (still smirking), plonked the shopping down (still grinning), I had lunch (still tittering), and proceeded to write the blog post.

Molly - aged 10, you might recall - was sat behind me and saw me writing.

"What's that?" she asked... "Just me -" I replied "- writing a blog post about how Asda -" GiggleChuckleSmirk "- forgot to write down the price of the items and put it on a poster!!"

Cue much hand-rubbing-in-glee at the hilarity of the blog post.

"What, that price THERE?" she chimes in, pointing at the F$CKING-GREAT-BIG-£20-IN-RED-AND-GLITTER at the top of the poster...

My hand rubbing/chuckling/gaffawing/smirking and general self-amusement suddenly switches off. I look at the sign, blink a couple of times, and being a man, I hold the tears in and start the process of "Highlight-All-Delete-All" in the blog post.

And start over.

In future, when I refer to my Brain Fog, you should now have a pretty good idea of what it's like to be me.

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

I'm Not Dead (Yet)

Contrary to popular belief from my radio silence, I can confirm that I still alive. I might have dropped off the face of the earth, I may have gone a wee bit quiet, but I am still around, head down, plodding through... Well, my brain I suppose.

First off, to everyone that has messaged, text, twittered or contacted Kellie to see what's what, thank you. Honestly, it means a lot that so many of you noticed I was quiet, and took time out to see if I was alright. One of you that has been checking up on me has enough shit on his/her plate, but has still taken time out to make sure I was still fighting the good fight, so a special thank you there for that person - who I won't name, as he/she will only tell me I'd do the same, it was nothing, etc etc.

To be honest, I am not alright. Despite the rather dramatic title, it's nothing terrible - for some people, it probably doesn't even register as bad, but I have felt shit these last few weeks.

Shit physically, and Shit mentally.

Physically, I am in a lot of pain. I'm not sure what has changed, I am not sure what I have done, but my body feels heavy, tired, slow, and it hurts. Some days, it's a constant draining ache, other days, it feels like I have been hit by a truck.  Twice.

My hands and feet have been swelling, a knee hurts, bones ache deep inside my body, my head bangs and clatters around in my skull, my head feels heavy... And that's just today.

Additionally, my sleeping patterns are all screwed again, so tomorrow I am going back to Midnight/One-AM bedtimes, up at six.

Mentally, I have no drive. None. My head dredges up shitty stuff which I dwell on, I think about stuff and get caught up with things that have no baring on, well, anything. I have arguments in my mind with people over pointless things.

I am still functioning - I am still poodling around the house after people, I am still cooking some relatively nice dinners, I am washing and dressing and everything else, I am sorting the kids out and all the rest of it. Because I know exactly how some of you will read that. Granted, I have to push myself to do all this stuff, and no, before anyone starts ringing alarm bells, I am NOT about to throw myself off the top of The Shard...

Facebook has been left by the wayside (not that I was that active on there), and Twitter I have been struggling to keep up with, and obviously, 0ddness has been a bit quiet. But I am going to make more effort, more attempts at being involved with my friends.

I feel like crap, have random crap on my mind, and just want to feel good. Better. Healthy.

I am waiting for an appointment with my new specialist which I am hoping I will get this week. I will be chasing them for a date that I can start some sort of treatment. And I will be keeping people in the loop, involved, informed.

Again, thank you for everything, for all the messages and making sure I am alive. I've not replied to many of them but will do my best.

So no, I am not dead, nor will I be any time soon. Life has just sort of... Gotten away from me a bit.

A Milestone

So, today was The Day. After taking my first day "Off Sick" on 31st May 2000, and seeing doctors and specialists and clinics and professionals, and trying different medications and techniques and remedies and everything else you can think of, I have finally been told "This Is What Is Wrong With You"

Let me backtrack. I have been dreading this appointment today. Properly dreading it. I suspected I was going to be told "it's all in your mind" or "this is the wrong place, let me refer you to..." or worse-case "Faker!"

I've been stewing on it and worrying. Kellie has been doing her best to keep me at an even keel, but last night I hardly slept at all.

We had a rather busy weekend, helping the 0dd Mother-in-Law empty her loft for re-insulation, then Sunday we spent the day at the park with Clare (Kellies friend from school) and an assortment of children. I was knackered.

On the plus side, it meant that today, they could see me on an "off" day, so when I said "I have no strength in my hands or arms" they could see I actually had no strength in my hands or arms.

The questions and questionnaires I had to fill out were a little daunting and I kept getting confused on them, but had Kellie with me to help with them. Pain, Energy Levels, Concentration, Moods, Mental Stuff, other Medical things...

We sat and I told the doctors (there were two in there with me!) exactly how I felt, how fed up and miserable I am, how I am with my pain, how I was before I was ill... And, as per my other half, I had to tell them properly or she would tell them. And by that, I mean she would have said "The dozy git wears himself out by doing too much because he's a knob-head and I tell him not to do this stuff and I tell him to let me help but does he listen oh no because Dan knows best and blah blahblahblah..."

Sod. That.

It took them a few minutes to agree that I do in fact fall quite merrily slap bang in the middle of a diagnosis for ME/CFS. With all the mental stuff, the concentration, the lack of energy, the pain and generally feel shit all the damn time, it's "obvious to us that is what you have"

So how do I feel about it?

Mainly, I am relieved that finally I can say to people "THIS is what is wrong with me!" and not just let people think I'm a lazy bastard that doesn't want to work. I am happy they sat and listened and understood what I was telling them. I'm a little miffed it has taken so long. When they told me, it was all I could do not to burst into tears. I think Kellie knew, and took my hand and squeezed it.

I'm not sure how I feel to be honest. Time will tell, I suppose.

The plan of action now, is they have three departments: A Pain Management chap, a Therapist Lady... And... I can't think who the third was. The Pain Management bloke is also a physiotherapist, and will help out where he can, but because of "how I am" with my moods, anxiety, depression (which I admit, I hide very very well) and my brain-related stuff, I am seeing the Therapist first - Cognitive Behaviour Therapy (CBT) to help me work through things.

They have also increased my Lyrica/Pregabalin dose by 50% so I am now on 450mg a day, and can go up to 600mg apparently.

I was open, I was honest, I answered all the questions truthfully and didn't hide anything nor make anything seem worse than it actually is.

So time will tell.

Thank you to my Kellie for being with me, for taking me, and for holding my hand. And thank you to Mand for messaging me on and off today to make sure I am OK and for understanding. Thank you to everyone that wished me well via Facebook & Twitter too...

And I will keep you posted as best I can with everything - not sure I will go into stuff with the CBT lady too much... Guarded as ever ;)

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

A Rough One...

I thought for a change, I would deviate from the Sleep-Restriction themed posts and do a "I've had a busy day" post.

First off, without going into detail as I don't know if I am allowed to, I was told today that there are some awful f$cking people in the world. You know they are all out there, but you never think they are going to affect your lives, but every now and then, they DO. To my friends so-affected by such complete w4nkers, I'm sorry, and if there's anything we can do to help - just shout.

Otherwise, I am tired. I think that is A) Granted, and B) Expected. However, I am sure it is working. Mostly. Last night, I went to bed at my usual time (2am, for those not reading), BUT took a little while to get to sleep. Not too long, but I do remember having random, drawn out thoughts. The next thing I know, there is crashing and banging outside the bedroom.

Cats.

Cats with a bit of plastic - a lid or something.

Mostly, it was Galadriel, but Gimli was involved too. Throwing the lid down the stairs, crashing down after it, crashing and skittering across the floor boards outside the bedroom door, then down the wooden stairs, crashing after it... The it was up and down the hallway, hitting the doors and units downstairs. I had to resist as best I could, BUT I needed to know the time. On the one hand, I might be able to get back to sleep, but on the other, if it was around 30 minutes before the time I'm supposed to get up, then it wouldn't be worth it.

Clock check: 0522.

Bollocks. So I had to get up there and then. I considered kicking the cats in the backsides, but I'm not that mean - I just didn't let them in the living room while I woke up.

So, about three hours sleep last night. Tonight is my last night of 2-6, tomorrow I'm doing 1-6. It is working, I can tell it's working as once I am asleep, the alarm wakes me (or the bloody cats) which is a rarity in itself.

Today, I've been my usual cheery, ray of sunshine and sweetness & light. Sort of. Grumpy, stroppy, moody, exhausted and my body trying to doze off constantly.

With that in mind, today was my first "normal" Thursday with school runs and kids and everything. I had to get Tamsyn to school, and the journey to school was Tam reading her book to me just to keep me awake. After dropping her off, I had to go into town and do some shopping, but after nodding off in the playground, I decided the first order of business would be coffee.

A brief foray into Costas (which is a million times better than Starbucks, FYI) and a large cinnamon latte with a chocolate tiffin re-fuelled me for a bit, and I hit the shops. We didn't need much, but one of Kellies old school friends and her girls was over for dinner tonight, so I had to get some bits.

As a tangent, I will also point out I had to look at kids shoes. Kids shoes, it would turn out, for the future 0dd-Mother in Law. See, we got Molly a new pair of school boots the other day, and the 0dd MIL came over, saw them and being that she's little, tried on the KIDS SIZE 2. Which pretty much fit her. So I had to look for the KIDS SIZE 3 for her.

But I digress.

With the shopping done, I got in and decided NOT to sit down - that would just invite sleep. So I swept through then realised I had a doctors appointment. So off out again and saw Mr Doctor Man. Kellie has been threatening to do something with the doctor that I've not been very good at doing.

Telling the complete truth.

See, I've got this rather icky habit of not liking to make a fuss, and so when the doctor asks "How you feeling" I don't tell him I can't put my socks on, I don't tell him the pain in my legs is enough to drive me to tears, I say "I'm a bit sore" or something similar. So with the threat of HER making a scene, I decided to tell him the truth.

He shook his head but started tapping on the computer. My Lyrica (Pregabalin) has been increased to an extra 100mg a day to 300mg. And I need to have a BATTERY of blood tests. There are nine or ten things on the request sheet; glucose, liver function, coeliac screen plus loads of other, AND I need to be there for 9am for a Cortisol screening.

Once this is done, assuming they all come back inconclusive, I'm going to be referred to a specialist. An actual, genuine, bona-fide specialist. I've not seen one of those for at least 8 years. AND the doc is now trying to get a proper diagnosis, and I am sure he said the specialist is for Chronic Fatigue Syndrome/M.E. There are worse things he could be pushing for I suppose. We shall see.

Blood test is Tuesday morning, so be warned for whining.

After that, it was time to start clearing up - so I spent the afternoon pottering around the house and making it presentable for Kellies friend from school. Again, without going into anything, she's been having a very hard time for the last month, so this was a break to come over and put the world to rights.

So, school run, back in, finished clearing up, and they arrived while Kellie was stuck at work. SIX kids running around, and us gassing about everything.

8pm they went home, and I had another quick tidy before throwing the girls to bed and finally flopping out on the sofa watching House.

Granted, between 8pm and 10.30pm, Kellie had to nudge me a half dozen times when I dozed off... But here we are, it's now just gone midnight and I am exhausted. This post has been all over the place I know, but I am doing this AND watching Disneys Hercules - I've not seen it for years and love it, but figure if I have two things to concentrate on I might stay awake ;)

So, last night of four hours, and I can't wait for tomorrow night. Plus it's the weekend so I don't need to worry about doing too much. Once I know I am allowed to talk about the rant at the start, I will do so. And it will be a shouty sweary rant.

For the next ninety minutes, I will mostly be fighting sleep. Night.