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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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There are stages we go through after diagnosis that go something like this:
At least these are what I have experienced, along with an underlying grief that tends to resurface now and then.
In my first blog entry I talked about my diagnosis and my shock. When I was done freaking out, I moved in and out of denial for awhile. I figured as long as my symptoms weren't bothering me too much then I could just pretend that scleroderma didn't exist in me.
And while I was busy in denial, mowing the lawn, weeding the garden, babysitting 5 kids in addition to my own, and generally knocking myself out with housework, laundry, grocery shopping, cooking, and being chauffeur to play dates, sports practices and games, I realized that if I was going to try to keep up at that pace, then I was going to have to ask for help.
Since I was (and still am) not good at asking for help, I had to let some things go, beginning with my yard. It saddens me since I have always loved gardening and enjoy the feeling of a hard day's work and seeing the before and after. I take pride in my home's landscape. Now I had to watch the weeds grow, let my dream projects go and try to not let it bother me.
I have not given up on my gardening. I just do what I can, when I can, and try not to stress about what's always left to do. A garden is never reallly "done" anyway. But here is where that grief comes in. I will always long for the days when my body allowed me to do pretty much whatever I wanted. And I still grieve for the loss of what once was.
I still have a tendency towards denial, or "functional denial" as I like to call it. Sort of a healthy denial if you will, in which I do acknowledge scleroderma; I've taken my doctor's advice on treatment; I have made adjustments in my life to accommodate my limited abilities and I continue to go about my business of living life to its fullest without even thinking about scleroderma for the most part. So, I suppose you could call it acceptance.
Making adjustments was and is hard. Really hard! When you've always been one to do it yourself as well as for others, it's just not in your vocabulary to ask for help. I still have a hard time asking for help and won't unless it's absolutely necessary.
Making adjustments has been a real learning experience. I have had to learn to look at a scrappy yardscape and not care (too much). I have had to learn to be able to relax in a messy house. I have had to learn to not feel guilty for feeding my kids instant oatmeal for dinner two nights in a row and for having to dig dirty socks out of the hamper for them to wear because I just couldn't get around to doing the laundry. (Incidentally I solved this problem by buying more socks. Lots and lots of socks!)
Replacing the word "lazy" with the word "pacing" was helpful. If I was a healthy person, you could call me lazy. Since I have scleroderma, I am pacing myself. Most days I can get up and clean the house for 20 minutes then I need to take a break for 20 minutes. And that's okay. Things take longer to get done and I don't get near as much done as I would like to, or as I used to, but it's just one of those adjustments I've had to make and I accept it gladly in exchange for being able to do it at all.
I also learned that accepting help was almost as hard as asking for help. It does take a bit of pride swallowing and with my esophageal problems.....well you know.
After learning more and more about scleroderma and its tag along friends like Raynaud's, interstitial lung disease, the GI business and more, I decided I was going to take a proactive approach to my treatment and care.
I noticed some loss of range of motion in my hands. I dread losing any function in my hands. So I went to hand therapy as a preventive measure. I learned a lot of great stretching exercises and bought myself a parafin wax bath as well as a small hand massager that helps to keep my joints flexible. I use it on my tight face too and it helps a lot.
Since getting any kind of outdoor exercise in the cold months is aggravating to my Raynaud's, I bought myself a treadmill with the gift money from my dear ol' dad. Now just finding the discipline to get on it regularly is another story. But hey, it was a proactive move!
I also finally started making multi-vitamins, probiotics and glucosamine a regular part of my "pharmaceutical food group" as a fellow sclerodermian in my town refers to her handfulls of daily pills.
Massage is also something I would like to make a regular part of my care but it ain't cheap! Our town has a school of massage and offers student massages 3-4 times/year at a great rate, so I try to hit those.
It feels good taking charge of my body and my care and treatment. I feel empowered and determined to not let scleroderma rule me but for me to rule scleroderma.
I have two very active young boys who need me and too much life left to live to let sclero get the best of me.
Next: Gratitude, Acceptance and Peace
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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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...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.
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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