Trollheart

I guess the first and most obvious points I’d like to make are that this is a) a true story b) has not really got a happy ending, though it’s hardly tragic and c) is deeply personal to me. I’m happy enough to share the details here, rather than repeat them many times either in PM or in threads, but I would ask everyone who reads this to treat it with the same respect and dignity you would if you were to read anyone else’s personal journal or diary. I’m inviting those who want to to come in and share a side of my personal life that, though referred to and hinted at, is not widely disseminated across the forum, and I expect and I hope deserve discretion from those of you who decide to read it.

Comments and banter is fine here, but again I would ask you to be mindful(ness) of the fact that this journal, unlike my many others, is very personal and does cover a recent period of my life where things got really, really bad. Jokes and slagging off is all grand, no problem there, but please do take into account that much of this is still painful for me to relate.

And so we begin, where else, but at the beginning.

Before we do though, a quick prologue.



A Day in My Life: No Sleep Till…?

I’ve spoken before about how I look after Karen. Most of you know I gave up my job in 2009 to be her fulltime carer, and how one year later she suffered a stroke/surge of the MS (doctors are still arguing about what it actually was, but it certainly had the appearance and all the symptoms as I understand them of a stroke) and ended up completely dependent on me. I had I guess one year of basically enjoying what I would have termed as my newfound freedom - no job, no need to get up early or go to bed at any particular time, no pressure, nobody hassling me over work - before the hammer fell. I guess a year isn’t bad, but the honeymoon was certainly over by 2010.

A typical day now consists of me getting up around 1120 (there’s little point in my getting up earlier, as Karen’s Carers only arrive at midday) and waking Karen up. After her carers have changed and washed her and changed the bed, I give her her breakfast and her medication, and read to her. This usually lasts from about 1245 to approximately 1400 or so, whereafter I settle her down for the afternoon. MS gives you chronic fatigue, and no matter how long she sleeps Karen is always tired. Plus, with only the TV to watch or me to listen to, there’s not a whole lot of argument for extending the day.

She wakes up at about 1750, the carers come back at 1800. She then has something to eat and more medication, a smoke and I put the TV on for her, and start her dinner. This is usually ready about 1930 and must be finished by 2000, as that’s when the carers return for the final time. She then has some dessert afterwards and another smoke, I leave her to her telly and do what I can until my own dinner time arrives. I usually eat around the 2230 mark. At 2355 I go back down and settle her for the night, giving her her medication, most important of which are her sleeping tablets. She won’t sleep without these. I’m usually finished with her by about 0215 or so. With luck she’ll sleep through the night but it has been known - not recently, thankfully - for her to call me at any hour in the night or early morning, to the point where I could never be assured of a good night’s sleep. Having settled her I then watch a bit of telly or write or whatever till about 0400, at which point I go to bed.

The next morning, we do it all again.

Nobody should make the mistake of thinking I’m a saint here. I do everything I possibly can for Karen, but my god she gets on my nerves sometimes, and we’ve had knockdown rows, I’ve screamed abuse at her and called her all the bitches and cows going. She’s had me punching walls and kicking doors, and I’ve had her in tears. Obviously these incidents are isolated, though not uncommon. When you’re looking after someone who is helpless but who is at heart selfish, self-centred and usually doesn’t care about your feelings, or appreciate what you do, you’re bound to explode occasionally. You wouldn’t be human otherwise. Equally obviously, I hope, there has never been any physical altercation, only verbal. Unless you count kicking doors etc. A lot of roaring and screaming, cursing and threatening, name-calling and accusations, but that’s as far as it goes.

I’m not by any means excusing it, but before you condemn me, you try it. Try dedicating your life - all of your life - twenty-four seven to one person. Try accepting that you will never have any relationship with a girl, never marry, never go on holiday, and make just enough money to survive but not live. Try being called at six in the morning to be told she’s too cold or warm, or has dropped something, or worse: try not being able to understand a word she says. Try to get her to clarify what she’s saying, fail and stomp angrily back to bed. Try constantly calling the doctor for what seems to be a kidney infection, having your weekend ruined by a careless but cutting remark about you or something you’ve done. Try having your food flung back in your face (metaphorically; I mean she says what you’ve cooked is horrible) or being told your television is too loud in the afternoon, and she can’t sleep.

Try experiencing all of these things, on a regular basis. Try not being able to escape from the house, or when you do, on your return she’s scowling and asking where you were. Or have her demand something for dinner which you know she can’t handle, choke on it and then blame you. Try being told she’s too warm and doesn’t need a duvet on her bed, then five minutes later being told she’s cold and does need it, and a further five minutes later she’s too warm again. Try brightening up her room by putting up a poster, only to be told a week later that it’s “catching her eye” and has to be taken down. Try all of these things, then rebuke me for occasionally losing my cool.

Like the song says, it ain’t easy sometimes.

Of course, this is what I signed on for. I knew these were the kind of things I’d have to face. Well, no I didn’t. I’ve never nursed anyone through anything more than a cold in my life. Even when my mother was dying - we had hoped it was a remission but cancer got her in the end - it was Karen who looked after her. I did what I could, of course, but it would be inaccurate and very unfair of me to say I nursed her. I did not. Karen was the one who was there, looking after her needs until she had to be moved to hospital.So this was the first time I had ever been in that situation. I expect it will also be the last.

So I had an idea Karen would be sick, and need attention, but I was unaware how bad it was going to get. Nonetheless, I’ve never regretted being the one to care for her, never wished it had been someone else (well, for a minute or two when things get rough, but never in any serious way) and I’m always glad I was able to be here for her. So I don’t present the above as any sort of excuse - there’s never an excuse for losing your temper with someone who’s bed-bound, much less when that person is your sister - but more as an explanation, an illustration that sometimes even the best of us (and I do not count myself in such a description) can be pushed too far, and tempers fray and then snap. We’re all only human. In the words of the late, great Rory Gallagher, I ain’t no saint.


Happy New Fucking Year!

Dateline: December 31 2018

Every single damn year I say I’m not going to say it, and every single damn year I say it: HAPPY NEW YEAR! Why? What’s so great about a new year? Every single goddamn year since probably 2010 for me has been worse than the last. I can’t actually think of even one that has been better than the one that preceded it. Of course, that’s not to say by any means that my life has been filled with misery for nearly ten years now, but on balance, every year there’s been some new crisis, some downturn in our circumstances or some reason not to welcome in the new year.

And yet, I do it every year. I celebrate the end of the old year and look forward to the next one being better, though it never is. Why? Well mostly I guess because of Karen. For those of you who don’t know, Karen is my sister, forty-nine years of age next week as I write this, and suffering from MS (Multiple Sclerosis) for almost twenty years now, almost fifteen of which have had her confined to bed, seven of which have had her virtually imprisoned upstairs in her bedroom as we waited for the local county council to get their act together and sanction the building of a purpose-made extension downstairs. This was completed in late 2013, since which time she’s been living downstairs; if still virtually a prisoner, she is at least on the ground floor now.

I used to worry about her being upstairs. Other than the fact that, where she was, little light managed to enter through the small window in the arch bedroom in which she slept - and basically lived - and it was so far away from her bed that there really was no view of the world for her, I feared what would happen were the house to go on fire, or should we have to evacuate for any other reason? Karen’s not the lightest of women, and even if she was, carrying another person down a flight of stairs - particularly in a stressful situation such as escaping a fire - is not an easy feat. In addition, I weigh a paltry nine stone (that’s what, 126 lbs?) and have the manly physique of a stick man. Let’s just say, the likelihood was that we would both have burned.

So I was glad when we managed to move her down, and for a while things were grand. Of course, they didn’t stay that way. MS is a degenerative disease, and over the years Karen has become less able to do anything, to the point where now it’s hard even to understand what she says, and choking fits are the norm. So maybe this is why I, with total insincerity, wish her a Happy New Year every December 31st. Things are bad enough for her. She knows it probably won’t get better, but like us all, she’s ready and willing to be lied to, if only for her own sanity, and so the pretence is maintained.

But New Year’s Eve of 2018 was not about to let us get away that easily. Oh, no! Before the old year had been seen out, Karen was already complaining of pain, sweating, feeling sick, all the usual symptoms that accompany her regular bouts of UTI - Urinary Tract Infections, or to put it more simply, kidney infections. Due to her MS, due to being in bed and being incontinent she is very susceptible to these. In Ireland we have an emergency on-call doctor service called D-Doc; we’re virtually regulars there now. So I had to call D-Doc, on surely one of the busiest nights of their year, and request a visit. Naturally, we were told this would take several hours. Needless to say, it was not a happy New Year's Eve for us.

As the night wore on into morning, Karen started to feel a little less poorly (I can’t recall, but I may have given her some antibiotics I had in the house) and as we were told, having rang at 0130, that it could be another three hours before the doctor would be there, she decided she felt recovered enough to be able to cancel and we would rebook in the morning. That was New Year’s Day of course, a bank holiday, but these are emergency doctors, and we were assured she would be seen.

The next morning I rang up, and about I think 1pm or so a doctor did come out. Something you must understand about Karen is that she is in bed all the time and does not have a catheter, so this means that getting a urine sample is difficult to say the least. So the doctors generally tend to go on a “best guess” based on her history, and if we tell them it’s probably a UTI they usually agree. If they can get a sample they can confirm or disprove this, but most times they have to operate on instinct and on trust. So this doctor accepted that she “probably” had a UTI, prescribed her some antibiotics, which presented a new problem. New Year’s Day, all chemists surely were closed? I was advised by the doctor that my local one would be open, however on heading over there, yes indeed they were closed.

Thus began a search for an open chemist on New Year’s Day, a quest as long and frustrating as you would expect it to be. Eventually I did find one, got the prescription, got home and gave it to Karen. She began to feel better - she had woken that morning feeling bad again - and the rest of the day was passed more or less in peace. But we had entered 2019 as it intended to keep us, and much worse was to come. For a time, it would seem like better, but it would turn out to be misery disguised as joy. Story of my life at the moment.

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Trollheart: Signature-free since April 2018

The Batlord

As much as people talk about you being a good brother I'd just like to say that hearing about how Karen lives makes me feel literally claustrophobic. Can't really see, hearing going, can't get out of bed, and now she's having problems talking? But worst of all... only two cigarettes per day? I can't even imagine the hell she goes through waiting for her layabout brother to show up with one stingy Rothman.

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Trollheart

It's pretty miserable for her, yes, but it's not two cigarettes a day. Not sure where you got that. Let's see. One in the morning with her breakfast. One when she wakes up after her afternoon nap. One after her dinner. One after dessert. One after MY dinner. One before she goes to sleep. So that's, what, six in all? She only smokes a little of each though; never finishes a full one. Well, very seldom. She has a lot of trouble breathing and it gets very tiring for her.

Also, it's Silk Cut Blue she smokes, which I'm told are the mildest cigarettes you can get?

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Trollheart: Signature-free since April 2018

The Batlord

Sounds like you're backpedaling to justifying keeping down one of my smoker brethren.

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Neapolitan

I'll read it, but I probably won't chime in much. I feel wave of stress come over me already anticipating what I am about to read.

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Trollheart

First of all, it's sistern, prole. She ain't a guy. Secondly, backpedalling? I can't even ride a bike, never mind backwards! When did I ever say she only got two cigarettes? I don't think that ever happened. Honestly, the less the better, for her health, but then she's got so little left in her life, she can have as many as she likes.
Honestly don't blame you, mate; it won't be an easy read. But then, I have to live it. Seriously, don't feel bad if you don't read it. It's unlikely to be entertaining (except to a heartless bastard like Batty), more informative for those who want to know. If you don't want to know, I certainly understand.

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Trollheart: Signature-free since April 2018

The Batlord

You specifically listed two times a day she gets a cig.

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Trollheart

Don't be a pedant, man. Not here. Just because I didn't list every single time she gets a smoke doesn't mean you can conclude that's all she gets. I've explained the situation, so if you misunderstood or if I misled you, sorry. Now you know.

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Trollheart: Signature-free since April 2018

The Batlord

I'm not being a pedant. I went off your very detailed description and then you were like "I don't know where you got that idea" and then I explained where I got that idea.

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Trollheart

Have a Heart, Eddie: I’m Depressed

Dateline: January 2018

Listen, I don’t expect anyone has too much sympathy for those who get depressed. That’s not what I mean: of course you do. Everyone does. What I mean to say is that sadly it’s nothing new, and we all get down from time to time. Except, I don’t. Not normally, or at least, not before the last few years. I’m generally an upbeat sort of guy. When things were at their worst and it was hard to go on, it was me who was the strong one, as I pretty much always have to be, and still do. But now, well, in recent years I can’t deny it’s got harder to keep a brave face on, to take on the world on my own and not to let the pressure get to me.

So probably won’t necessarily surprise anyone that after the crappy New Year’s Eve we had, January was no barrel of laughs either. Specifically, there was nothing I could put my finger on or point to as the cause of my unhappiness, but then, when you’re in this situation you don’t need any more reason. I’ve been told better men than me would have found it hard to do what I do, and I’m sure that’s true - at heart, we’ll all selfish really - but I’ve always taken the view that this is what I have to do, this is the situation and I just have to get on with it. Sure, I’ve got depressed from time to time - everyone heard about my almost collapsing after eating nothing for three days in 2017 - but never anything you would call serious.

That all changed, however, last year.

I think it was more annoying and frustrating because of my inability to single out any cause for the sudden depression, but it just gripped me one day and, while it didn’t quite reflect the title of this journal, not yet, I did feel very hopeless. It’s a very hard thing, being depressed but trying not to show it, and I’m sure others of you have struggled with the same thing. You don’t want sympathy, you don’t even want understanding and you certainly don’t want idiots saying things like “cheer up, it may never happen” or other mindless platitudes, but in my case there was the added problem of Karen. If she saw I was depressed, she would worry - and she’s a world class worrier; she could worry for Ireland - and then she would get depressed too. Quite frankly, how she hasn’t up to now I don’t quite understand. She attributes her attitude to me, but I don’t know about that. Maybe she’s just stronger than she thinks.

Anyway, going about your daily business and trying not to look too down is hard, and of course in the end, in that situation it’s next to impossible, so she did notice, and I did have to admit that I was depressed. She understood, but there’s something innately selfish about Karen, I’m sorry to say. When something happens to affect her she really only thinks in terms of herself and how that impacts her situation, leading to her at one point telling me in a sort of bored, annoyed voice that I was making her gloomy. Needless to say, my reaction to that comment was not all it should have been!

I think the worst thing about depression is, at least from my perspective anyway, how it grabs hold of you and won’t let you get away. You want to be happy - you desperately want to be happy, or at least not sad - but you can’t see any way to. No matter what you do, no matter how you try to cheer yourself up, or how other people do, nothing works. You remain locked in this dark, dismal, unremitting world of misery and hopelessness, and despair just takes you over. It becomes hard to do anything, or want to; it becomes hard to get up in the morning (how cliched is that? But I did actually suffer from this, and had I not had to, I would have stayed in bed, unable to face the day) and even hard to go to bed at night, knowing that another day is waiting at the end of the relatively brief respite of a few hours’ sleep.

And, as the title of the journal suggests, sorrows tend to multiply when you’re down. I’m sure everyone knows where the quote comes from (“When sorrows come, they come not as single spies, but in battalions!” - Hamlet) but it’s true. I’ve found the more down I am, the worse things get, the harder life becomes and the more obstacles are thrown in my way, or, to refer back to my recent entry in my Trollheart’s Theme Park journal, the more mountains rise up before me. Although I don’t believe, it’s always seemed to me as if some being up there is laughing at me: think things are bad now? ZAP! Chew on that, pal! This happened back in 2017, as already alluded to, when I was so badly depressed that I forgot to/couldn’t eat for three days and almost collapsed. At the height of this weakness I was forced to bring Karen to hospital, even though I felt the chances of me being taken in if we went were quite high. I felt like, how could I be so unlucky? I feel terrible, unable to move, and ready to black out, and yet here Karen is (no fault of hers of course) feeling sick and the doctor, when called, tells us we have to go to hospital!

So after about a sixteen-hour stay we get through that, come back home in the late morning/early afternoon, I get her to bed then collapse myself for about three hours before I have to haul myself back up, sort out her bags (ie replace all the medication, clothes, other paraphernalia we brought to the hospital in case she got admitted) and do the dishes from last night, and then prepare her dinner, all while feeling like I just want to die. I’ve related this story before, so I won’t go into all the details, but let’s just say at that point I really felt that if there was a God after all, he really hated me.



So after that diversion in this story, how did my sorrows become multiplied? Meet Eddie, one of our remaining cats. Eddie is what Karen calls a “big, beautiful boy” and what I call fat. He’s a gentle giant, one of those scaredy-cats who’re afraid of their own shadows, but he’s very affectionate and he loves being petted, to the extent that if he hears our other cat, Millie, being given attention and he’s upstairs he’ll charge down so as not to be left out. Eddie’s a great comfort when you’re down, and at one point I was petting him when I realised his ears felt very rough. As often things tend to get stuck on cats, from sitting in the grass or whatever the hell they do, I assumed it was something he had been messing with that had adhered to his ears and I began scratching at it. Only then did I realise it was more like the skin of his ears was flaking, as if he had eczema or something.

Eddie had also been subject to fits of coughing, not just fur balls, but more a kind of nervous wheeze, which had made me think in terms of panic attacks. All things considered, I resolved to take him to the vet. This is not as easily accomplished as you might think. Look at his picture. He’s a big cat, and big cats are strong. In order to get him into the cage in which he would be transported, I had to grab him while he was asleep and force him in. Unfortunately for me, the cage was in the middle of the floor, and as I pushed forward and he pushed back, trying to escape, I had to move forward, the cage moving with me, until we came up against the wall and I could squeeze him in, locking the door. The few seconds we performed this mad dance seemed like hours to me; I knew if I slackened the pressure or he broke away I would never get him in the cage. You only get one chance, and if they get wary you’ll never catch them, never mind get them into the cage.

Anyway, finally imprisoned in the metal box, Eddie was examined by the vet, who said he was a little concerned, and wanted to keep him in. And so he did. A week later I went back to collect him, to be told the bad news. There was, and is, a problem with Eddie’s heart. It’s enlarged, and is therefore beating faster than it should, to compensate for the larger size. As a result, he is now on medication for the rest of his life. Always knew he had a big heart, but this is something else. I was however told there may be further bad news. Kieran, the vet, took me in to show me an x-ray of Eddie’s leg, where there was a “growth” which he wanted to get analysed, in case the dreaded C-word might apply. It would take another week to get the results, and he suggested I leave Eddie with them until they came back. I did, returning without Eddie and with a heavier heart than I had before I had left the house. Didn’t do my depression any good, I can tell you.

Needless to say (to those of you who know Karen) I didn’t tell Karen about the leg. Karen doesn’t do well with bad news. I mean, she’s almost a child when it comes to that. You have to hide things from her; she gets very emotional and always foresees the worst possible outcome. She has enough problems in her life already, so I never see the point in adding to her worries. I told her about Eddie’s heart, as I had to, but just mentioned vaguely that there were more tests to be run. As it turned out, the leg growth was not cancerous, so that was at least some good news.

The postscript to this was that when I went to pay the bill it came to almost 700 Euro, which equates to about 800 dollars, but luckily Eddie is insured, so we were able to claim back about half of that. It does mean that we now have an extra expense every month for his medication, and that the two cats get a meat pouch every evening in addition to their dry food (other than Wednesday and Friday, when they get fish) because I have to grind Eddie’s tablets up into food he will eat. So although she’s not sick, Millie still wins.

Me? I was still stuck in a depression, with now a sick cat on my hands, extra bills to pay and Karen depressed too over Eddie’s sickness (even though it could have been a lot worse). The next month, it would seem, rather surprisingly, that light could finally be glimpsed at the end of the tunnel. But you know what they say: be careful what you wish for. That light is usually something very fast and very dangerous hurtling right for you…

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Trollheart: Signature-free since April 2018