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I awaken and for the 3-4th time, it takes me at least 30 seconds to get my head straight and realize I am not in my room at the home I grew up in. As the fog lifts from my sluggish brain, my dream comes shooting back to me in bits and pieces - different dream but same place and same theme as always. Maybe I should mention that to my therapist?Gauging from the light and the weather outside, I guess it's probably 5:23 am. I look at my phone, it's 5:25. I'm never more than 10 minutes off. I peek through my curtains at my goats in their pen, being careful that they don't see me because if they do, they will start hollering for their alfalfa and they won't shut up until they get it. . They should know by now my coffee comes first! And that they never get to eat before 7am.As I lay there, going over what day it is and what is going on with my boys - does Braden work? Does Henry work after school? Will I have to make dinner? Do I have an appointment today? Did I miss another appointment? ! I have to report household income changes to DSHS. Is my prescription ready YET? Who do I have to yell at about that? What fresh kill will the cat have brought in for her kittens today? I don't wanna get up.I don't have to get up. But I do anyway....
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...a speeding car screeches to a sudden and abrupt halt at the side of a road. The door opens, without warning, I am ruthlessly shoved out and land in a sprawling heap. Wheels spin, such is the hurry of its departure and the car is gone. I wait and I wait and I wait until I realise that no one is coming back for me. Still, my gaze searches every passing car hoping for that spark of mutual recognition. Surely the car will return for me, the occupants perturbed by my absence. Nope, long gone, all gone, they’ve moved on…
Scleroderma shoved me out of the life I was living, dumped me curbside and sped off, unfortunately taking many of my relationships with it. Having dismantled the body it grudgingly inhabits with me, having totally invaded and subdued this host, it had my relationships in its sight. Target acquired, missile fired, relationship expired.
It has not succeeded with all of my relationships, mind you, it’s just that the ones it has are rather telling. Akin to the monster in a black and white film, "IT" picks off those vulnerable, on the peripheral, yet “IT” refuses to adhere to the norms we’ve come to expect from that genre. That only those on the peripheral become prey, the main character and entourage remain untouched. With at least 30 minutes dedicated to introducing the minor and major characters, the audience is reassured that only those marked with terrible personal problems or a devastating family secret will fly out of the fuselage or be eaten alive because even when the end is nigh, cinematically speaking, someone survives. How else is the tale told? The hero(ine) is always left standing.
Scleroderma follows no such guidelines, makes no such agreement with its host. Alas, it can't read and is not a big movie goer.
I was recently told by a close relative that they avoided socialising with me. I had already realised this and guessed the "why". Mind you there's a difference between knowing in a small corner of your mind and knowing as an acknowledged fact with the attached feelings. Well, now I know and I feel that knowing.
I have been left behind, ditched, abandoned and the like because I am unreliable, no longer fun. I am want to cancel an engagement. Having arranged to go out, I then fail to do so when the specified day rolls around. Or, should I actually partake of the occasion, I fade halfway through, by the time I arrive at said destination, get into the joint, sit, order and stare down the first plateful, I have flopped, fizzled out, faded away, succumbed to the familiar, tired and wanting to go home. All of this makes me a massive spoiler of other people's fun and I know that this is why I rarely, if ever, see certain people.
Of course this puts the blame and responsibility squarely on me even though I have no control over the cause and am just as much “IT’s” victim as those whose fun I spoil, not that anyone acknowledges this. I am hit with a double whammy, when I am unable to go out, I miss out on doing so and when I am well, no one asks me out in case I cancel so I again miss out. It's a wonder I see anyone! Apocalypse now, tomorrow or already, what difference would it make to me?! Okay, now I exaggerate but that's how it feels.
Scleroderma, having started the dismantling process, will at some point finish it but I never expected people to get in on the act in the meantime. When you have a chronic illness, become disabled, have an uncertain life trajectory and expectancy, you don’t expect your family’s response to be one of self preservation by shunning. I am not yet dead but sometimes I wonder if they're pushing me away now so that when I am, they'll already be used to the resulting vacancy. I can only speculate. What I do know is that this ploy won't do the trick. You can't prepare. Death is brutal, selfish, and sudden, even if you know it's coming which of course we all do there’s a difference between knowing in a “vague, one day in the distance” kind of way and “very likely with physical pain and suffering, sooner than it ought to” kind of way.
I am still alive but the life I had pre scleroderma is not, it was butchered, hacked away from me piece by piece. The loss I felt was brutal, sudden and selfish with some relationships withering in the fallout. All I can do now is regroup, like a true remaining survivor of “IT”, not blown out of the fuselage, not eaten alive, take stock, plot course and plod on, wondering where I'm going, if I’ll ever get there and how I’ll know when I do.
Did I ever mention how illiterate I am with computers? It's a surprise to all I imagine, that so much of my time is spent at a Radio Station which actually runs with nothing but computers! I am there at my desk looking all clever and like know what I'm doing -- It's a ruse!
I have spent hours writing stuff, from reports to emails, only to press the wrong button and it all magically disappears - how frustrating. I haven't the will to sit down and begin again. My heart sinks.
My stumpy fingers, clumsy and unwilling to hit the right key, thank goodness for the "Backspace" button. How many times have I attempted to write a word that just keeps coming up with the wrong thing altogether, and that brings me to my phone Oh! the dreaded texting exercise. I have sent many a text that makes no sense what-so-ever.
"Hi Alan I gusse I wsont be in tofay, i hace too muvh to do"......Send!!!
........Ping! with a little mailbox sign
I usually ring him instead it's easier. My texts have been known to crack a smile on the straightest face. I have sent messages that I couldn't possibly post on here for fear of deletion from the site. My daughter despairs. She got me one of those stylus things that you touch the letter with in the hope it solved my dyslexic messages so that people could understand without having to ring me back! It worked for a time but I lost it and now it's back to stumpy fingers and non decipherable messages
I mentioned it in clinic that I am likely to get myself into trouble with my fingers and my somewhat rude or dysfunctional messages - they think I am in the wrong place, "The psychiatric Dept is that way my dear!" And yes I am such a fool, I make fun of myself to make light of a situation, that's me all over.
I joke that my fingers are perfect for making pastry. In fact my pastry though I say it myself is by far my greatest achievement in the kitchen, although I am pretty good at baking!
I used to be top of the class at school, it was almost embarrassing watching my cakes rise like I was inflating them with a bicycle pump. My friends, it's fair to say hated me, my teacher loved me. I was the model student from which she would take the credit and I would stand with a will to die of embarrassment at the final result.
I took to cake decorating too. I went to college and I will always remember the Mothers Day Cake, beautifully decorated like a woven basket with flowers all made of sugar and the foolish trick of putting it on the roof of my car whilst I got in and then forgot about it.
It fell off in the middle of the road about half a mile from the college to rapturous laughter from passers by. My work ruined and a flattened cake to boot. One of my many thousand disasters!
My stumpy fingers ended my love of cake decorating. It does ruin most of my everyday chores in fact. I hate loose change, shoelaces, buttons, threading a needle-impossible! Opening jars, milk cartons, zips, clasps, packaging, and text messages to name but a few.
And there goes my phone - text message. Let's see who I can upset today. My life is never dull?
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Most of us of a certain age would have been saddened by the recent death of one of my heroes, Neil Armstrong, the first man to have stepped on the surface of the moon. Heroes are hard to come by these days; they appear to be in short supply. If you were to ask people if they had a hero, someone they admire and respect, they would all give their personal take on the subject; after all we are so very uniquely different.
I think Neil Armstrong was a reluctant hero. He shunned his celebrity status, the limelight, wanting to be separate from the ‘man on the moon syndrome’ and get on with his everyday life. Facing the everyday mundane and challenges that scleroderma brings can help make heroes of us all, albeit reluctant, all fuelled up with nowhere to go. We may on occasions feel blasted into some kind of outer space experience, an orbit unknown to us, a whole series of circumstances, psychological trials and relational challenges.
As s therapist I have met many people who, for whatever reason, want to escape a relationship that causes them pain. Some have tried to escape into mood changing substances, some into new relationships and others into whatever takes their fancy. However most people want to just stop and take a look at their relationships, their behaviour and overcome, gain control and get on with living their lives. In my thinking this determination and tenacity makes them a hero, albeit a reluctant one.
Sometimes we need to hide emotionally, deny or minimise the impact scleroderma is having on ourselves and on our loved one. Seeing someone you love fighting to gain control over their body, feelings, mobility and environment can leave us feeling powerless. Sometimes we escape into work, activity, or nothingness, beyond the gravitational pull, floating into space for a time, anything rather than face the evitable loss, hurt and of course grief that follows on like an ugly sister. We recall past experiences, painless, fun times when we had dream as we wait patiently for that beauty which comes with acceptance, that acceptance of chronic illness and all it brings.
Surviving the impact of scleroderma means developing a psychological coping strategy, a kind of temporary agreement with ourselves that does not deny pain, anger and hurt, neither does it blitz these emotions out onto others. If we’re propitious we’ll maybe find another hero who will listen as we take this unexpected and unusual journey. Hero's after all are made not born, they tackle the problem to release the gifts and gifts can come in the shape of people, people just like you!
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I live in a semi-rural setting, it used to be very rural until a few years ago when all of a sudden new housing developments started popping up like jack-in-the-boxes left and right, and there have always been a few feral cats running around.
There is one female in particular that always seems to somehow find a place to use as a nursery somewhere in my yard and not a year goes by that I am not trying to catch kittens, tame them, vaccinate them and find good homes for. Last year she chose a spot behind the shed for her broods, but my husband had stored some ladders there so this year she found a new spot, under my porch.
This is all well and good; the kittens will be a bit easier to catch and I might even be able to catch the mother if I play my cards right and get her vaccinated and maybe even spayed this time since the local shelters are having a free spay/neuter drive. (I have managed to catch her a few times in the past and sweet talked a vet into giving her rabies vaccines and so forth and this June she is due for her next rabies booster.)
No one asked Loki what he thought of this development, but I think that his opinion would be a veracious paw down after his recent interaction with Mama Cat.
It has been pretty hot the past few days and as a treat for Loki I went ahead and opened his pool early this year. I had gotten him one of those plastic kiddy wading pools with a slide last year and he loved it, dashing up the quick steps made out of paving blocks then skittering down the slide and pouncing around in the shallow water before scrambling back up the slide to lay down in the sun and dry off. He was full of quivering excitement as he watched me pull out his pool and give it a quick wipe down before filling it with the hose, dancing in circles then peering over the edge and barking at the swirling water as it filled.
He was so excited that he did not even notice that Mama Cat, his arch nemesis, was beside the porch watching him with feline disdain.
I turned off the hose and called Loki over to me then told him to go get his towel from the porch and with a happy yip he spun and dashed to the porch steps sliding to a startled stop at the sight that greeted him at the bottom of the steps.
There stood Mama Cat, her back at full arch, twisting slightly to the side as her tail puffed into a bristle, spitting at him and side hopping towards him. With a yelp, my brave little dog who has barked his fool head off at black bears and is not one bit afraid of dogs ten times his size, tucked tail and raced towards me eyes as big as saucers and screaming the entire way. Before I knew what was happening he had flung his little trembling body into my arms and was trying to bury himself under my shirt and me, being the supportive and loving doggy mom that I am, laughed like there was no tomorrow.
When hubby got home he was put to work placing lattice around the porch, leaving a small opening at the back, far away from the stairs, for Mama and brood to come and go but that does not give Loki any comfort at this time.
It is cooler today and the pool will not be used, which is just fine with Loki since he does not want to use the steps without an armed guard present. Mama Cat has not moved her brood, they are still under there and in a few weeks time there will be kittens staggering around and a few weeks after that I will hopefully have them inside in some old ferret cages teaching them that people can be very nice and preparing them for safe and comfortable homes. Loki knows the drills for baby kittens in the home and though he is not thrilled he does well with them and will even allow them to crawl over him and sleep next to him after they have tamed and have been vaccinated since interaction with dogs helps them adjust to a new home.
Right now, though Loki would give you a wary eye and whisper to you "Be careful of the porch - a monster lives there."
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