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

Mindy

You are a really great human Trollheart. An amazing brother also, a true example of what to be as a great family member

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https://www.instagram.com/shhons_meme_agency

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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