Pain

There is something about pain that is so hard to deal with. Anyone that suffers from any kind of chronic pain condition might understand what I'm saying, but of late, it's something I've found to be has to deal with.

First off, when you tell someone you're in pain, straight away there's the whole faith part of it. You can't see pain, so when you tell people you're in agony, they either believe you or they don't. I find that one of the hardest parts to cope with - thinking people don't believe me. You wonder if people think you're just making excuses, or trying to get out of something, or just trying to get sympathy...

I hate feeling like that. I hate it wondering if people are inwardly rolling their eyes, "Dan's claiming to be in pain again..." or that they think I'm being lazy and just want to stay on the sofa. Then there's the "Well you've just done X, Y or Z - it can't be THAT bad!" attitude of people. No, my pain isn't gone. More manageable at that point maybe, or I'm just pissed off and NEED to do something, and pushing through it... That doesn't mean I can do it all the time, and usually I end up feeling even worse than before.

Trying to explain pain to someone - be it a friend, family member, or medical professional - is so difficult. The 1-10 scale is kind of bizarre. The type of pain is really hard for me to explain in terms that it makes sense. I sometimes try to explain one of my pains like "hot water being poured down my leg" but that doesn't cover it. If you poured hot water down your leg, yes it would hurt, but it wouldn't be what I'm feeling. Cramping pains, stabbing pains, sharp pains, throwing pains, burning pains, shooting pains... If you think about it, none of these make sense. But then, if I try explaining it like someone is crushing my muscles, or grinding my bones together, that's literally the only way I can describe it, but it's never accurate.

The worst part is how pain affects a person - and I'm sure it is different for everyone. Pain is tiring. It wears you down, gets on top of you, and affects you mentally. Some days, I hurt so much, it makes my cognitive jumble seem worse. I used to be a healthy, active person, and the pain I feel reminds me I never used to feel like this. I could go somewhere, charge around all day, get home, cook, have friends over, play games til the middle of the night, have a few hours sleep, walk to work... And on and on. Now, my pain is always there, always on, always reminding me that I can't do what I used to do - let alone, I can't do what I WANT to do. Getting out of bed, getting dressed, walking down a half dozen stairs... My pain adds to my exhaustion. And yet, despite how I feel, I worry that people see me sitting on the sofa as a sign of me being lazy, that I did X earlier, therefore I should be able to do Y...

This last week-and-a-bit has been rough, which has made me sleep less than usual and be busier than usual. Today, I am literally running on fumes. I have been dropping stuff, spilling things, bumbling and bumping into things. I'm tired and feel like crap.

But, despite this, I'm upright, sat on the floor playing with Poppy, while My Little Pony is on (again). I just wish people understood a little better that when I (or anyone that suffers) say they're in pain, there is so much more to it than just an achey limb or whatever.

End Of My Rope (Again)



So, assuming I've done it right, the image above sums up how I'm doing of late. And, if I'm honest, it's not what you'd call "great" or anything in that general area.

Tonight's insomnia is less insomnia, more my M.E being its usual wanky self. The last couple of days have been slightly more active than usual, and because I took extra spoons out of my week, I am now suffering. I am exhausted. Full-on, completely and utterly exhausted. I've even swapped from my tablet to my phone to write this post, as the tablet is too heavy.

I just want to sleep. That's not a big ask. But I am in more pain than usual tonight, thanks to the aforementioned busy days. My legs and back are pulsing in time to my heart beat. My shoulders ache. My hands feel like they're two sizes too big. And I'm fluctuating from "brrr chilly!" to "holy f$ck heat!" which is great fun too.

All this is taking its toll on happy old Dan. I know I'm moody and grumpy and short tempered and tearful and miserable... And the hardest part is trying to get people to understand and to realise that I am struggling as much as I am. "Oh Dan hasn't been in contact, and when he is all he does is moan" No, I haven't, but that's because I can't focus on any one thing. I can wake up and think about all the simple things I need to do, but by the time I've struggled into clothing, made my way down five stairs, and performed the miraculous tasks of Making Coffee and Poppy's Breakfast, I am tired. Anything past that is little more than pushing myself...

And then I end up here again. Laying in bed at 3am feeling crap, listening to Kellie snore, Poppy fidget, and the cats marauding around the house. Five o clock rolls around, and I flake out, only to have to be up again within a couple of hours.

I've tried a routine of being awake in the night and doing stuff - reading, watching TV, listening to music, playing a game - instead of trying to sleep, but all that achieved was me being more awake for longer. Object defeated.

I know I need to get back to my GP. I know I need my med dosages - all my meds - increased. And I try to stay positive that "these are the ones that will help" but know in the back of my mind, I'll have a few months of them taking the edge off, until my body decides they're crap, and to metabolise them quicker than they can help me.

3am is quiet. Mostly. Aside from the snoring/fidgeting/marauding. I hear the occasional but of traffic. Oddly, I just hear a load of seagulls bitching somewhere about something. Occasionally I'll hear a fox screaming somewhere, or cats rowing over territory. But 3am is mostly just quiet. Which you would think is nice. But my brain doesn't like the quiet. If it's not showing my streams of random flashcards (I don't know if I've explained that before...), it'll be going over everything it thinks I need to think about. Conversations I've had. Situations people are dealing with. Arguments and how I should have responded. Conversations in the future. Plus I random check the doors are locked because, hell, why not have some random paranoia too.

And so, I lay here, wanting nothing more than to sleep, but knowing full well the pain, the miserable mood, the anxiety - all these little things conspiring to prevent me from sleeping..

I know I'm getting worse as time goes by. That's not new information. But I wish I could get worse BUT manage the pain and mood better than I am. And to sleep. Again, it doesn't seem like an unreasonable request...

I know I've been radio silent for a while. I've not been on Facebook in over a year. I occasionally use Twitter. I sometimes post to Instagram. My poor blog is neglected. But despite this being my little corner of the web where I can prattle on about whatever I want, I feel like I'm just moaning and being very much "woe is me", knowing full well that some of you reading still believe there's sod-all wrong with me. That I'm being dramatic. Attention seeking.

If that were true, I'd like my Oscar now please.

The Tasmanian Devil

So, yesterday evening, I decided I'd chill out with a mug of green tea. It - and chamomile - are the only "herbal" teas I enjoy. Of course, Poppy being Poppy, she wanted to try some, so I let her try a little.

And of course, Poppy being Poppy, she enjoyed it. So I tried a little more, and she still liked it. In the end, being the wonderful amazing daddy that I am, I made her her own cup of green tea (in one of her sippy cups, duh).

I had no issue with her having it. She likes caffeine-free tea now and then, and so I figured with green tea being naturally caffeine-free, she could have it without any issues.

Just over an hour later, Kellie and I decided it was bedtime. I was exhausted, and so we took madam to bed too. We tried to give her her bottle, she didn't want it - she was happier beating the crap out of me. I put Adventure Time on for her, but she didn't want to watch it - she was happier beating the crap out of me. I put on some music for her but, you guessed it - she was happier beating the crap out of me...

She was all over the place. Bouncing and jumping and rolling around and literally - no, LITERALLY - trying to climb the walls.

We could not figure what was going on. I thought she might be over-tired as she had refused to nap all day. Maybe it was the single bite of biscuit she had just before bed that Kellie gave her. Maybe she was hungry..

For nearly three hours, that child was literally the child of the Tasmanian Devil - she was a little whirlwind of destruction. Finally, she literally dropped where she was, three quarters of the way down the bed, pointing the wrong way, between our legs.

This morning, out of curiosity more than anything, I checked the caffeine content of green tea. I figured that there must be some sort of leftover amount - maybe that caused her to be mental?

Turns out, Green Tea and Normal Tea come from the same plant. Turns out, it's not caffeine-free. Turns out, if you let it steep for a while and agitate it (you know, like I do...) it increases the caffeine content. Turns out, if you give a baby a cup of Green Tea, they go bananas and end up jacked-up on an obscene amount of caffeine.

Today, I am fully, completely, utterly exhausted. I'm going to have some Green Tea to wake me up. Poppy is going to have some milk...

The Moral? If your wife says "Yes it should be ok" but that SAME person, only hours earlier, makes the comment "I didn't realise Egypt was part of Africa", check with a professional first!

Ah The Joys...



There is something about insomnia, or my body clock, or my brain, that is just bizarre. Or humans in general? Whatever it is, I don't get it. I don't understand how I can be exhausted all day long, and decide an early night is what I need - only to find myself still wide awake seven hours later.

It's pushing 4am here and obviously, no other bastard is awake. I've always been a night owl, but when I have something to do - gaming, movie marathons, binge-watching TV shows - but I read for a few hours, couldn't keep my eyes open, curled up, and...

Well, the bit that follows the "and" is still in progress.

Yes, I've got crap on my mind.
Yes, I'm hurting.
Yes, I feel crap.

But I wouldn't say any more than normal. And no, I can't just "clear my mind" nor take more meds, nor deal with it or anything else equally helpful.

And now I can hear a blackbird starting to gear up for the Dawn Chorus.

I know what's going to happen... I'll wake up either early (Poppy'd Awake), or manage a lay in. Then by lunch I'll be exhausted and force myself to stay awake. By mid-afternoon I will doze off: my body we just thrown in a big fat NOPE and I'll sleep for an hour. Then the rest of the day will be me struggling to stay with it to function. I'll get into bed between half eight and, say, ten... And here I'll be this time tomorrow.

I hate it and I'm sick of it. But as ever in my long history of insomnia, I refuse to take meds to put me to sleep. I don't want to end up on more drugs, especially things as addictive and nasty as sleeping tablets. Any if you can't your minds back, you'll remember I tried Melatonin for a few months, and that stopped working too.

I'm just fed up. I'm sick of feeling crap all the time. I'm sick of fighting feeling shit all the time. I'm sick of people getting arsey with me for not doing as much as they feel I should, and on the other side of that shitty coin, getting arsey because I have to change plans because I pushed myself too far and made myself worse. The stigma I face from people that still - STILL - don't get it, after so many years of me being like this, I hate it. I hate the looks and the "funny" jokes, and the whispered comments to others, and the outright bluntness and disbelieving at how I can be, and how I am...

I just feel that everything has been an uphill struggle for so long, the fight is slowly ebbing away. But I will carry on, watching the sky change colour while I lay awake all night, ignore the sounds I make trying to dress or shower or walk up four stairs, just accept the shitty feelings and side effects I get from my meds, and do my best to draw a smile on my face, tell people "I'm ok" and just carry on as usual until... I don't know... The miraculous cure some people seem to think will happen. Or I get caught up in my own neurosis. Or I manage to "just get over it" as is often advised to me.

But for now at four in the morning, I will carry on trying to sleep, knowing tomorrow I'll be equally as moody and stressy, and just plod on.

Long Time, No Sleep

It's been a long long time since I put in an appearance online. I've not blogged in a long time, haven't been on Facebook since last Autumn, Twitter only sporadically, and Instagram only now & then. The last couple of months have been long, hard and arduous... And the fact I'm here at half three in the morning should also suggest how well I'm coping with my insomnia, let alone everything else.

Physically and Mentally, I have been really struggling. With everything. My body feels like it is just done before I actually manage anything, and my brain doesn't know WHAT the fuck it's doing most of the time. I'm depressed, stressed, nervous, worried, paranoid, anxious... I'm past the point of being "tired" almost every day before I even force myself out of bed. One or two chores, and that's me wiped out for the rest of the day, and usuallly the following day as well.

I know most people don't want to read me moaning and whinging about poor old me, but it's gotten to the point where I don't talk about me much any more. People might ask how I am, and I'm given the option of either A) saying the same shit I always say, or B) lie about how I'm feeling. And neither are much of an option. My sleep patterns are screwed beyond belief, my migraines have increased in both frequency AND intensity (now I am usually sick with them, as opposed to vomiting being a rarity), and my pain levels are generally at the point where most things out actions cause additional pain.

As a general rule, my brain was never the most quiet of minds in the world, but over the last couple of months, it's gotten steadily noisier. Flashbacks to shit I've been through. Dwelling on stuff going on. Worrying about things that may be nothing or may be the end of the world. Reliving crap. Obsessing over random things. And that's on top of all the other shit it throws out as "normal" with random questions, forgetting everything from names to dates to things I'm supposed to be doing, plus the bizarre thoughts and the odd "flash-card" type phenomenon I deal with.

I just feel like a great big useless lump of fat, in everyone's way, pissing everyone off, upsetting people, doing the wrong things, saying the wrong things - or on the flip side, not doing the right things and not saying the right things - in my mind, there's a difference.

I've just been finding it very hard to make people understand how I feel. I struggle to talk, I can't open up, and generally the only time I can get any sort of order to my scrambled grey matter is by just writing, and seeing what comes out. I would love nothing more than to be at work, and failing that, to get up, sort the kids out, see Kellie out, spend the day with Poppy whilst clearing and tidying every aspect of the house, cooking dinner, helping kids with homework, keeping fit... But most days, it's all I can do to put clothing on myself. I feel like I make no monetary contribution to the family, and the bare basics I DO manage to do aren't enough, and everyone else has to try picking up the slack. Worse, I force myself to do more - and end up making myself feel even worse for a few days.

I don't know how to fix how I feel, either physically or mentally. People come out with really "helpful" suggestions like, "Try just being happy" or "Push through it and you'll feel better" but they are just words. If I could JUST be happy, I would be. If I could PUSH through the pain I would do so.

I know I've disappeared from a lot of peoples inboxes and text logs, and I'm sorry. I just don't know exactly how to... Be. I know people stop talking to me because they simply don't know what to say when I answer truthfully, and by the same token, I feel like such a crap friend when I can't just go out and do stuff, or don't know what to say or how to deal with people's situations...

I dunno. I'm just rambling at this point I think. My eyes are burning from tiredness, but I can't sleep. My body is aching all over, but my hands and legs are literally throbbing. I need a drink too, but the effort of walking to the kitchen is a bit beyond me at the moment.

Who knows - maybe I feel extra crappy tonight because I'm just so tired. Exhausted, even. My brain has been screaming in my ear since I came to bed many hours ago, so I've opted to try just getting this all typed out without thinking too hard. Open the floodgates, if you will.

With that, I think I've moaned enough, sounded depressed enough, and rambled enough for one evening. I just wish I could expanding myself in a more eloquent fashion, make people realise and understand what I'm going through and how I'm feeling, but better.

And now, the birds are slowly starting to wake up... Hopefully I'll get SOME sleep tonight.

The 21st

So, today is the 21st of February. A day which I feel more than see has arrived. I don't know, maybe I'm attuned to it after so many years, maybe I subconsciously know the date, maybe I'm blocking it out but it still appears.

Today marks eleven years since losing my beautiful little Bethy. Eleven years. Sometimes it seems so raw, other times it just feels like it was a million years ago... Either way, I still remember it so vividly... And that is both a blessing and a curse. I can remember my daughters last day, but I also remember her last day.

It's currently 2am. Yesterday, I spent the morning messing around with Poppy, who then slept like a log, until woken to get ready to go to Kerry & James's. There, we had a few drinks, watched photos and a video from their wedding in August, came home, had burger and chips delivered, I scoffed a butt-load of Jaffa Cakes, and we watched Brooklyn Nine-Nine. After midnight struck, Poppy was tired and restless (AFTER midnight, duh!) so we got into bed, and I've been watching documentaries since, just trying to distract myself.

This year seems and feels different, I think because I have Poppy. Obviously she's not a replacement or anything like that, but she has SO many Bethy Mannerisms, it's spooky. The same "I'm up to no good, but here's a cheesy smile" smile. The same expressions. They look very similar... I'm trying to hang in there, build a bridge, hang tough... But it's so difficult. Obviously Poppy is too young to know or understand anything yet, but she will. It was the same with Tamsyn - she was born four weeks to the day after losing my Bethany.

I am quite tired now, and am considering sleep... I'm just worried I'm going to end up dreaming vivid dreams, reliving shit I don't want to relive. I might try sitting and watching more documentaries, but suspect I'll doze off and miss whatever I'm watching..

Regardless, as usual, my phone will probably sit in the corner being ignored. I get some lovely messages from you lovely people, but some of them are quite hard to read, so I have to leave and avoid for another day.

Also, as I'm posting from my tablet (not sure I want the dark lounge, alone with my thoughts and photos of my angel) the formatting of this entry might be wonky - and I can't post photos until I edit from my laptop... But anyway...


My beautiful darling angel, Bethy,

I can't believe it's been so long - again. I know I probably say that every year, but I cannot believe it's been eleven years since you had to go.

And even after eleven years, I miss you, your cuddles, and your glorious smile. However, I notice that Poppy has developed several behavioural things she could have only picked up from you.

I know you visit. People probably think I'm mad, but I definitely smell things - hospital things usually, so I know you come back to check to up on us.

AND to teach Poppy.

I hope you know, I still talk about you, still think about you almost every day, and still remember you, picturing you swinging from the bannisters or coming running when I got home.

I miss you so much my beautiful little Angel. I have no idea how I made it this far some days, not idea how it made it to eleven years, and yet it is still as fresh and raw as if it has only just happened.

I know, yes, that you HAD to go. Your poor little self had done so much, brought so many people together, raised so much more awareness of CHD... You, my baby, are a wonderful, amazing and very very special little girl. But the selfish part of me hates you had to go, hates that so much happened to someone so pure and innocent, sometime I just want to rage at the world.

I'm sure that, where ever you are, you are having a great time. I am certain you can run now. Fall over and not vomit. Do whatever you want and not get poorly and turn blue. Well, blue-er! But most importantly, I am absolutely, 100% sure, that you are up there Shakin' That Ass!

Just know that you are very much missed by everyone, that so many new people want to meet you, and that I hate you were taken from me so early. You are so loved my Bethy, my little Baby Moo...

I See You, Baby...
Daddy

Happy Birthday Baby

Hard to think that today, my beautiful Bethy would have turned 15 years old. Thanks to my brain being so tired of late, last night and today have been quite rough, but I've tried to keep my mind occupied...

Between a mixture of Sherlock, World of Warcraft, and Fringe, I've been able to carry on, but I know I'm distracted by her not being here.

Poppy has been all smiles and cuddles today, and when I got up with her this morning, we laid on the lounge floor playing... It's scary how much Poppy looks like Bethany, but then, being sisters it's sorry of expected.

To my beautiful Bethy,

Fifteen... It seems incredible to me that all those years ago, I was cuddling you, admiring how beautiful, little, wiggling - albeit a funny colour - you were.

I look back over all these years, and think of all the things you haven't been here for, but I know for sure you would still be the happy, cheerful, friendly little girl you always were... And you would be an amazing sister to this lot. You and Molly would be out and about together, you and Tam would be playing together, and you'd be an incredible big sister to Poppy...

And, no doubt, ruling the boys with an iron fist...

Not a day goes by when I don't think of you, let alone miss you. Today, you've been on my mind since the early hours, and I know you'd not want me to be upset and missing you..

So happy birthday, my beautiful angel. I see you baby, ever single day, and love you as much now as I always have.

All my love,

Daddy x

Kellie Had A Drink...

Just... Wow...

A Weeks Hiatus

So, it has to be said that, one week on, I am not missing anything that is Facebook-related. Not the petty arguments, the flame wars, random people being offended by random posts/shares, and certainly not those making wild, outrageous and downright nasty comments either in general, or on world events...

And I have to be honest here - there's not actually anything that interesting there anyway. If you get your world news or world views from Facebook, it's probably too late for you already. Half the "really funny" stuff is older than rock, and the other half is filled with videos of people pissing around on Vine.

I did get one message - a text, that is, I'm logged out of Facebook AND Facebook Messenger - asking why I was posting so much to Facebook, considering I'm apparently sulking and not on there... Turns out my Twitter feed is linked to my Facebook account, so each time I Tweet, Facebook posts it. So if you think I'm on Facebook, I'm really not - the fact it says "Posted from Twitter" or whatever should be the biggest giveaway there!

Other than that, it's been a long week - mainly because (as alluded to before) my medical crap is definitely kicking my arse at the moment. My meds are doing squat, and my body feels like it's slowly spiralling and shutting down... I DID have an appointment with a pain management clinic, but thanks to my brain being - well, my brain - I got confused on dates, times and locations of said-appointment. Needless to say, I went to the wrong place. At the wrong time. On the wrong day. AFTER missing my appointment. So, they discharged me as clearly I was wasting their time. Despite Kellie phoning and explaining the situation.

So that's been nice.

It's not just the physical shit that has been flying into the fan... No no, that'd be easy. And manageable. No, it's also the mental shit. Having to be told and reminded and retold of a date or time or to do something. Reading through stuff but getting absolutely nowhere fast. Failing to follow plots or characters in TV programs. Slurring and getting tongue tied and muddled up trying to form simple sentences... It's all been a bit much for me really. As usual, some days are worse than others - it's all I can do to get up and put on pyjamas some days - but it's definitely been hard for me this year.

I've found my energy levels are a lot worse than they have been too... I have resorted to collapsing in bed if my body thinks it needs to crash. A few weeks ago, I slept from Friday through til Monday, only waking once or twice. This week, I went to bed Friday lunchtime and woke up Saturday evening. I think my body isn't quite so happy with my usual "just push through it" routine, and has taken to punishing me.

My sleep is all screwed up too, and I've resorted to Amytriptyline once again, but not every night. However, on it or off it, my brain keeps funny hours. We might go to bed at ten, and I'll flake out within half an hour... Only to wake at half two, toss and turn for a couple of hours, resort to reading or putting on something quiet to watch... By half five I give up and get up, and then carry on through awake til bedtime the following night. The other side of that suck salad, is the complete opposite. We'll got to bed, and I take a tablet... Only to lay wide awake til three or four, at which point my brain remembers it's been drugged, and puts me to sleep - and there I stay til early afternoon.

So for those wondering, yes I'm still "ill" and no my body isn't improved or better.

Ho hum.

In other news, I finally got a Chromecast, and if you don't have one, I really really highly recommend it. Easy to set up, even easier to use... I'm fairly sure even older people will understand it!

And last but not least, after a rather long break from World of Warcraft, the boys have managed to twist my arm and get me interested again... That, and the cinematic for the next expansion looks stunning, plus the upcoming Warcraft movie looks amazing. World of Warcrack has, slowly but surely, sucked me back in over the last couple of weeks! Dom even bought me the current expansion - though I suspect his ulterior motive was more that he always looked so sad and disappointed when he realised I played Minecraft!

Hopefully, getting back into WoW will help divert my attention away from the pain and general suckiness that is my body. That might sound like a bad thing, but it's not, I promise. I always used to enjoy Warcraft for the escapism aspect, as well as the fact it distracts me from the pain shooting through my body!

In general, life is just plodding on here at Chez English. Poppy keeps us all entertained, busy and on our toes - and she is definitely spoiled by everyone. But then, I think it's her right as youngest, prettiest and most evil (she clearly has evil mind-control powers) to be doted on by brothers, sisters, grandparents, friends, family and random strangers on the bus.

For any of the TL;DR crowd out there... Still not on Facebook, still ill, going back to wow, Poppy is great.

The World


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