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Sleep, eat, repeat!

Posted by Amanda Thorpe in Amanda Thorpe's Blog, 26 May 2015 · 40 views

The last two years have been, quite frankly, terrible. 730 days of sleep, eat, repeat.

To recap for you, I was diagnosed with diffuse systemic scleroderma in 2007, heart involvement nearly "took me outta the game" in 2010 (I reckon my foot ulcers begin around then) and I had 3 episodes of cellulitis within a 5 month period, consequently landing in hospital twice, the last time suffering an acute kidney injury and a bout of colitis. Needless to say this isn't a complete list, rather, a summary of the salient points, the magic moments memories are made of.

I know that whether scleroderma actually had flares is disputed by some doctors although there's no doubt that the disease can wax and wane. What the difference is supposed to be I don't know but for my purposes the worsening of my symptoms from 2013 to 2015 will be known henceforth as a flare.
Initially said flare caused tight skin that had slightly softened to tightened again and I now know this to be a red flag announcing the arrival of a flare. My foot ulcers had started before the flare but interestingly they did not heal until it ended. They were literally open for years despite help from everyone including being assessed for skin grafts which were declined. Timing turned out to be the key in their healing, a new dressing introduced at the tail end of the flare did the trick.
During the flare, pain was worse which meant that I had to use a wheelchair constantly, no longer able to shuffle around indoors on a good day, I became wheelchair dependant. I even had to have a stairlift fitted, but then at 46 years of age I was just too old to crawl up the stairs on my knees and take the descent courtesy of my derriere. However necessary the stairlift was, I bristled at tv commercials advertising the device, never seeing anyone tackle the stairs using my crawling/bumping bum technique, only someone in their seventies standing at the foot of the stairs gazing up longingly, shot almost in black and white to emphasise longing and loss. Then, technicolour bright, wearing wooly, patterned jumper, with facile smile revealing mighty white dentures (real teeth are NOT that white), they motored their way upwards. Give me a break!

Fatigue became so bad that of the last two years I spent most of the 730 days in bed asleep. During a four month period I went out of the house socially once. Once! For a time, Ma took over the few domestic chores I did but a cleaner became a better and permanent solution. As well as earning a living, Michael did all shopping and cooking whilst I did absolutely nothing. Even my commitment to the ISN community was reduced to the bare minimum.

Day after day and nothing improved. No change. Sleep, eat, repeat. So long elapsed between washing that I had to diarise it to remember when it happened and so as to know when to do it next. I felt helpless, pointless, living an aimless life that would never have direction again. Many times Michael reminded me that what I felt wasn't necessarily reality. More than once we had the "quality vs quantity" debate, coming down on the side of quality. Every time. Problem was, I felt like I didn't have any!

I felt the terrible pressure of lying in bed while my husband went to work, came home and worked, shopped, cooked and ran the home. He never complained and never added to my burden of guilt. I felt my life had become meaningless, my contribution negligible. I wondered if my illness would ever improve, concluding it would not I assumed that this was it, the end and I wasn't even that bothered.

Strange as it might sound it wasn't all doom and gloom though, it couldn't be, given what my husband and I are like as individuals, together and most importantly, with our faith. I would also like to give credit to the others who helped but alas there aren't any, apart that is, from the scleroderma community. Whether virtually, via these forums and blogs, or through my overall involvement with the ISN, I still had a purpose, however small and I still belonged to a group of people who understood. Even though my reliability was non existent, even though Shelley Ensz and Jo Frowde carried the lionshare of what the three of us do, they never acted in anyway to make me feel insignificant. I did what I could, "hooray!" and what I couldn't do "tomorrow will be better..." Never criticism, never disassociation. At home, Michael and I still met with our scleroderma support group although some meetings were cancelled. Again never criticism or disassociation. I wonder why family is always the exception, why always the pair of concrete slippers making sure you never surface? A close relative actually admitted that they ditched me because being ill made me unreliable and on the occasion I actually made it out, I was"zombie" like. I'll talk about this in more detail in another blog, or maybe on the psychiatrist's couch!

To conclude, the flare is now over and not a moment too soon. I had started to consider it in terms of, the end, my end, game over and I'm not even a glass half empty kinda gal. I am now able to share the demise of two terrible years, here, at the beginning of a new one. Okay, technically, we're nearly halfway through the year but I reckon I wanted to wait awhile and make sure, before putting my head above the parapet and calling time on two terrible years, 730 days of sleep, eat repeat!

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My Scleroderma and Depression Stole My Son.

Posted by barefut in barefut impressions, 24 August 2014 · 402 views

He was supposed to come home for the school year but he is not. He's only 16 and he's gone. I had to let him go. He is now living with his girlfriend, her mom and brother. And it has ripped my heart wide open.
And yes, I blame scleroderma and depression because every reason my son has for not wanting to live here anymore can be directly related back to these evil diseases. I did not ask for them and I am doing the best I can with it. But for my son, my best isn't good enough and he found another family he would rather live with. I have been replaced with a healthy mom. This is what he needs right now. So I have to let him go.

And as if dealing with scleroderma and depression isn't enough, now I must deal with this too. Tell me how much can one person take before they are irreparably broken? How exactly DOES one hold on to hope in the face of such despair?

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Stumpy Fingers

Posted by CFMBabs in CFM Babs from Chorley FM, 21 February 2013 · 1,222 views

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

"What? :/"

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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All fuelled up and nowhere to go!

Posted by Michael in Michael Thorpe's Blog, 02 December 2012 · 3,056 views

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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Attack of the Porch Monster (Penny has retired from blogging. We wish her all the best.)

Posted by Penny in My Two Cents..., 29 April 2009 · 1,269 views

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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