Sclero: Sclero -> Barbara Lowe

I've been so busy with this'n'that, I've hardly had the time to sit down and relax. The radio work is exhausting but great fun and I'm finding myself getting more heavily involved than I'd set out to do. I was made Marketing and Production Director because of my previous business experience and although my services are voluntary, I'm thoroughly worn out!

I've interviewed famous and not so famous people over the past few months, the most interesting people are usually the ones who are not famous I have to add! It's a world far from hospital waiting rooms, in fact no one knows about my condition except the directors and that was for insurance purposes. I'm treated as an individual and not the poor woman who has an incurable disease.

I went to the hospital last week for my annual check up. I may as well have spent the time doing something else because despite the usual palavar, they didn't manage to take blood, didn't manage a cortisone injection and didn't manage to fix my stiff neck which was stiffer on account of sitting in the most uncomfortable chair they could find. I waited patiently for over an hour, shifting my legs numerous times to allow people passage to the desk where they complained of numb bottoms and lengthy waits. A typical hospital waiting room and I decided there and then it wasn't where I wanted to be.

My long list of ailments suffered being struck off by each passing minute. I pondered my best scenario. "Should I tell her about the pain in my leg - or would that add more time to the appointment?" I settled upon not telling her about my sickness which is something I'm quite used to and have learned to live with. My best assumption was to go with the things that irritate me more and my leg happened to be one of them!

Not much to write about when my turn came along. You of all people know what comes next, so if I say the usual 'stuff' you'll know what I mean ;) I hate the undressing bit. My fingers decided to go into spasm and I found myself mumbling under my breath, "behave." They don't have to perform like I'm having a disability test -- she already knows what they're like. So I fumbled with the strings on the gown finally giving up as she walked into the room.

After the examination, I was handed my usual request for tests sheets -- the dreaded blood test was the sum of all fears. It's not that I'm squeamish, after all I've had more needles than hot dinners, and you wouldn't mind if all that prodding and poking, stabbing and delving got a drop of blood, the fact is they got just enough to give a gnat a transfusion and even that would have left him anaemic. So without enough blood to do any kind of test, I was sent home with the request sheets in hand for another go at my local hospital.

I enjoyed the rest of the day though. Hubby was off work and we had a nice afternoon together just taking it all in. We called at the butchers on the way home and bought a freezer full of stuff and then treated ourselves to a nice trip to the seaside for a good shiver by the front.

I'm sorry if my update isn't really interesting but that's just about where I'm at right now -- nothing to report, just stuff!

Brrrr! I'm so cold. No matter how much clothing I pile on it makes little difference! I feel about as bare as the trees at the moment and yes, they are dropping leaves at the rate of knots making my drive extremely slippery. My fire won't go and I'm fast losing patience with the thing. I piled on loads of wood and even a firelighter to boot but it flickers with a solitary flame and enough smoke to send signals.

My yearly appointment is one to look forward to tomorrow -- not! An early morning dash through city traffic is enough to put you off before even getting there. I have much to tell my doctor but since I don't want to go in the first place I'm pondering -- "tell her - tell her not"! I want to go in and out, I'm dreading the whole episode to be honest. I say so little these days that I think she thinks I'm cured. If I say I'm tired of complaining does that identify with any of you? I simply hate my condition so much that the "S" word is almost a swear word. I try and behave pre "S" until there's enough reminders that I'm paying no attention to it!

My family pretend there's nothing the matter with me or am I missing the point? Do they actually care? Is it my fault I wonder, giving out the wrong signals. No wonder my doctor thinks I'm cured! According to her if you're breathing, walking, talking and can stand on one leg without falling over -- you're okay for at least another year and if you can stand straight up from a sitting position -- you're a miracle of modern science. She'll be more interested in my choice of footwear than my aching limbs.

She'll ask if I've been exercising, swimming, doing my best to keep healthy. If I could do all that what do I need to see her for? The very fact that I can't do it is the whole reason I'm there. I can't swim because of my tube and the risk of infection and who needs exercise when it's so painful to do it!

My next blog will be a report of my exciting day at the hospital. No doubt status quo will be on the cards!

How do you define a hectic week -- taking the kids to school, hospital appointments, job commitments and family duties. Just stop and think for a while -- What about me?
I'm burned out, no energy and feel like I've been hit by a 37 bus full of passengers and in the midst of it all I can't remember my hospital appointment date which I'm sure I've missed, my hair salon appointment or where I'm supposed to be with who, where and when. If ever there was a case for short term Alzheimer's, I'd probably fit the criteria.

I found myself uncontrollably saying the yes word all to often this week and the biggest yes of all to something I don't think I am ready for as yet. Woman's Institute -- ring any bells? Isn't that for the over 50's? I'm fast approaching that golden number but my head is stuck at 21, am I ready for jam making, nude calendars and raspberry buns?

Anyhow I stupidly said I'd join, then regretted it all day, not because I think it's old and fuddy duddy -- nope! I just didn't have the time. From a stay at home frump with nothing to do, I'm now a radio presenter, board member and social services campaigner. Where would I find time to be a fully fledged WI member.

I've been battling a cold which didn't get the better of me. I didn't have time to dwell on the fact that my nose was so blocked I sounded like Daffy Duck on helium. It really was noticeable during an interview with a lady from the Digital TV Switch-over Service who came into the studio earlier in the week.

"So what wub the switch-over bean for us thed" I asked with tissue firmly gripped in hand. I saw her chair move further away from the mic. I don't blame her really, all this talk of pig flu I wonder if she thought I was full of it? It's only when I listened back to the recording that I realised how stupid I sounded so I instantly popped in a menthol drop which burned my gullet like mad but at least I could breathe.

Altogether a bad week. I need a rest. Where is all this me time?

Something's going on here of which there is no cure
I'm wandering in blog land, don't belong here I'm sure
I really feel umwanted, the gremlins locked me out
And even with a little push my presence was not about
I tried in vain but to no avail
My fingers turned a whiter pale
I tapped and screamed but the site wasn't playin
"Don't recognise you!" I think it was sayin
So I sat and sulked beyond despair
Thinking, I would never get there

My fingers numb and patience thin
I was never going to get back in
And even though I tried my best
And it put my temper to the test
I carried on until I'd done
But the silly old computer won
And I went to bed without a blog
But Shelley didn't sleep like a log
She tossed and turned coz I was missin
The cookies crumbled,started fizzin
The micro chips all hot and burned
And Shelley still tossed and turned
I'll get her in I won't be beat
She suddenly jumped to her feet
I'll change her name make her new
She didn't know what else to do?

She tweeked a few knobs and pressed on the keys
The last resort, she was on her knees
Hey presto! the wall came down to ground
And guess what? you'll see me around
And here's my blog although in rhyme
You might say "well it's about time"
I may be late for my appointment here
But the route I took wasn't so clear
I think I might need a cyber Sat Nav
What a useful tool for me to have
So until they invent such a device
Internet explorer will do very nice!

There's a definite nip in the air! I went outdoors this morning just to let my hubby out of the drive, my car was parked behind his, and I could see my breath. The car was damp and cold and, yes, my Raynaud's was in full bloom. The end of summer is here. "Huh! what summer?" I hear some of you scream, well you'd be right of course! We've had little or no summer at all, perhaps one or two days that actually felt like it should and my, how the weeds grew!

My skimpy tops stayed in the drawer and instead of folding away my jumpers, well they've been in use all season, I think my summer wear can be filed away under holiday clothing and 2010 Greece! The radio studio is nice and warm, for me that is. They marvel at my endurance with windows closed and air conditioning off. I present my show in jumper and trousers, whilst others wilt and sweat. I'm in Utopia for a few hours.

No one realises even myself sometimes, how much of an impact a chronic disease can have upon a person. I've altered my style of living -- you have to. I accept, but hate it all the same, that I'm not like other people. I never used to be like this, I was normal once. I'd love to rush around, grabbing lunch and wear nice clothes instead of my trademark jeans and heavy top. I'm sure they think I'm secretly turning into a man or something.

Good job no one can see through my smile. I'm a brilliant actress. I often think an Oscar would be on the cards for my performance on daily living. "Excuse me whilst I just go to the bathroom." A quick blast from the hand dryer prevents a multitude of awkward questions. "What's that! Oh, are they sore?"

I decline any activity that involves enjoyment. I could have joined the bowling team but a busy schedule prevented me from accepting the invite -- Not! I could have gone on a team building weekend which involved an assault course. Can you imagine me doing that? Not likely is the answer. My excuse was spared by the fact I was on holiday -- phew!

I'm living a lie, there's no doubt about that! How long can I keep it up, no one knows. Can I cope with a deluge of sympathy or a scornful look of disappointment?

I hate myself sometimes but I'm loving the life I've created.

Well the day started with me arriving at the station right in the middle of an interview with the Mayor. I was set upon by burly bouncers and ushered outside until the co-ordinator realised that I was a presenter and not some stray fortune seeker. Cameras everywhere, cables, lights and people talking in corridors. I recognised a TV presenter, much smaller than I imagined and very stern, not at all like the face I knew from the box! There were lots of fingers on lips, "Sshhh!" and whispering. I was propped up against the wall when they called me for a photo-shoot. I declined because most of the presenters were young and the inclusion of my face would have turned the picture into a portrait of The Von Trapp family!

My co-presenter arrived, bemused by all the commotion. "Have you been on camera yet?" he asked.

"I don't think we'll be asked actually, I think they've almost finished." I wasn't too disheartened to be honest because it was almost time to do our show and I'd suddenly gone chicken. Sitting in front of a microphone is one thing, having a camera shoved in your face is quite another.

We went into the studio leaving the pandemonium to continue outside. The mic lit up, red light on and we were on air. I heard the production room door swing open and a bit of a kerfuffle ensued behind the closed studio door. We ended our little piece of introductions, the light went off and the door swung open. In popped a camera man and a sound recordist.

"Sorry guys, do you mind if we film you?"

Roy, my co-presenter, well his face lit up. "Yeah come in--what do you want us to do?"

I froze. A little voice in my head said "No." I nervously smiled as they stood in the corner.

"Just act normal, just do your usual stuff and don't mind the camera, we'll be as non-invasive as possible," The camera man said.

We signed a piece of paper to say it was okay to be filmed. The next thing I heard was "Ready." The studio On Air! light came on and we began our little radio chat trying to be as natural as possible. I could see out of the corner of my eye the little green light on top of the camera unit. I just carried on and I was remarkably quite calm. They were indeed very quiet and by the time I'd finished, I'd hardly realised they were there!

They stayed for a while filming equipment and the odd reference to us to point a finger or move a button. The whole day was very fractious with dignitaries wandering around. The Mayor came in with all her chains, the MP and local newspaper. I nervously asked the Mayor to give us a song which the MP found very amusing, so I then asked him to do the same.

"My dear, I can stand up in Parliament and give all I've got, but sing... I think I'd get politics done away with!" he joked.

Soon it was all over with and all that was left scattered around the building were half eaten and curled up sandwiches, half drunk glasses of wine and bubbly and a sudden sense of calm. Roy picked through the sandwiches offering me one!

"Oh sorry! -- you don't, do you!" Eat was what he meant! to which I replied, "It's okay I'll give it a miss!"

Day over! My burst of stardom was no more than a few minutes. At least I can say I did it!

Trying to write this is nothing short of impossible. The kitten loves the keys and he's walking all over the keyboard. I got up early because he was making the most awful wining sound, only to be greeted with a huge "meeeoww" as I walked into the room. My daughter had thrown him out of her room in the early hours, a playful kitten at 3 am and a grumpy teenager is not a good mix. He's adorable such a character and you can't help but like him but the attention he requires is nothing short of devotion. He has the loudest "purr" I've ever heard and my other cat who lives outdoors, isn't impressed with him at all. She wandered indoors for her food and was met with a ball of purring fluff. She arched her back high, hissed, spat and the claws came out ready for pouncing. I grabbed him quickly and ushered him into the front room but I think she was out for a fight because then we had a cat's choir on either side of the door.

He's certainly a handful. We've had cats for a great many years, mostly farm cats that come and go. He's just a baby and quite huge with it. He's only 16 weeks old and he's already bigger than my other cat. I know that Persians are quite big by nature but I think he's going to be extra large.

The building work is coming on, albeit slowly. The weather hasn't been great and only slightly better than last year! However the weather forecast is good for the next few days so I'm hoping for at least a wall! I'm at the radio station today, doing what I know best -- talking! Next week will be a huge challenge because I'm on TV as well, and if I seem so matter of fact, well I am since I've got so used to the idea.

Lots to do today and not able to achieve much. Do you ever feel like that? I'll be chasing my tail all day, mostly for other people not myself .... and the hospital have cancelled my rheumatology appointment again! I'm now well overdue my 6 monthly check up and problems are mounting on my list. I have a very painful leg that I can't quite pinpoint -- it hurts all over, especially in bed or if I sleep on my side.

With my friend on the phone -- I need to go

I can't help but be a wee bit excited. It's been a funny old week! We got a kitten straight from boot camp, believe me he's small but a huge handful! Then, I've had the most amazing news, --- I'm about to be on TV, yes me! The BBC are coming to the radio station and filming a documentary about our station -- we are rather good you see!

The station runs purely on volunteers and over the past 12 months we've grown in popularity, not only locally but world wide. I now have my own show on Saturday mornings, plus I co-present with another DJ. The film crew will be there right in the middle of our show -- I must get my hair done?
It's all happening at once and I'm loving the challenge. It's only 2-3 hours each day I go in, but it gives me a sense of purpose. I feel completely whacked when I get home but talking is my best point and what do you do on the radio...?
I have my little T Shirt with the logo and my own set of headphones. I have my nickname, jingle and my own little group of followers.

I'm so thrilled about this and it just goes to show that a chronic illness doesn't always mean that you no longer have a place in society. The presenters don't even know about my illness but unfortunately I had to write my condition down when I was given a voluntary contract. The station manager was quite taken back when he read my statement and said that he never realised that I had anything wrong with me. I was a bit scared at that point thinking it would make a difference but it hasn't and because the contract is confidential, as far as I know there's just the manager who knows!
So what! is my motto. Does scleroderma affect my personality? Do I no longer have an interest in what goes on? My answer is a resounding no! I may be different and I may not open windows in the studio for obvious reasons, I like it hot! and I may not join in with tea and biscuits or the occasional sandwich, but I'm the same person with a few minor adjustments.

I'll probably hide in a cupboard when the film crew arrive! I may have mid levels of confidence but to go on TV may prove to be a little beyond my level. I won't have much choice if I'm on air. I can't run off in the middle of talk time. I need some encouragement I think? This is so exciting yet, nerve wrecking as well.

Don't I get myself into some things?

Funny, how an eighteen year old can flicker her eyelids and cuddle in such a disearning way as to sweigh my hubby into submission and me fighting her corner in a way I haven't done since she was a nipper. Her constant plea to own a kitten, fell upon deaf ears on almost a weekly basis and I don't know why but he relented almost out of the blue?

Before long we were travelling high into the Pennine region way above Pendle Hill on a rainy, misty Wednesday evening in search of a Persian Cat Breeder. After squabbling about directions -- I'm the worlds worst orienteerer, we ended up practically on a hill slope with an un-nerving feeling of insecurity. We were met at the top of a very long driveway with a smiling lady with two cats under each arm - no doubt we were at the right place then!

She invited us in and immediately my daughter was in awe at the fluffballs that ran around her feet.

"Mum, look at that one, it's gorgeous -- can I have it?"

The lady picked the kitten up -- "Oh he's trouble, full of beans and such a character"

"I want it! she said, taking hold.

We stayed for a while and then realising we had quite a trek home, said our goodbyes with kitten in carrier and daughter gleeming in tow.
The ride home was nightmare-ish! The kitten wined, scratched and growled in the back and my daughter tried in vain to calm him down but his cries got louder the further we went. I was beginning to realise that this was a bad idea but I had no idea how bad it was to become.

We arrived home well after 11pm. I was tired and I just needed my bed. My daughter opened the carrier door and "Whoosh" he was off! He ran round like a little tornado. My cloth was off the table in the first instance and before I could grab him, he was on top of the dresser. In a flash he was under the TV and then he tried to run up the chimney only my daughter grabbed his tail and we caught him before he swept it for us. The lovely cream coloured kitten was now a dusty black and not at all the same kitten we'd picked up an hour or so ago! The lady had spent hours bathing, grooming and making every one of her kittens look like little darlings. It's true that our kitten was the most handsome one in all the litter and his fur so fluffy and soft, he really had the aww factor! Now he looked like an old well used lavatory brush.

"We'll sort him out tomorrow" I said with a yawn "Give him his basket and some toys, he'll be fine"

I didn't know what we'd be waking up to -- would I have any furniture left or would he have found a means of escape and took off? but I popped my head around the door to see a little mucky kitten curled up in a ball. "Aww" he looked so cute but when he saw me, he was off! My daughter pushed past me in the doorway, grabbed him and began talking to him like he was a baby. I don't think anyone had told him that he only had 4 legs instead of eight because he found climbing the wall no challenge at all. We had to prise him off the upright beam! This cat was crossed with a monkey and a spider I'm sure!

Bathtime was an experience I shant be repeating on my own. He looked like a drowned rat as he slipped from the towel and ran straight downstairs. "What on earth have you done to him" asked hubby, as he ran straight over the top of the couch. I suppose blow drying was out of the question!

"He's wet through --he needs rubbing down or something" exclaimed my hubby who'd just had a shower when he shook himself as he darted past.

My daughter came home to a bedraggled cat and promptly grabbed the brush which turned into a pantomime. My table cloth came off again so did several ornaments from my dresser. He was clinging onto the curtain almost touching the pole and my daughter was trying to coax him down with a piece of string. He looked nothing like a Persian cat, more like a ferret or a sewer rat. He was pedigree through and through. Both parents were champions and their parents before them. Blue blood ran through his veins and a hint of madness I think!

This is the 4th day of keeping. He's calmed down a bit and he's beginning to want a little love. He sat with me today, purring gently, then had a little mad half hour which I ignored. We've adopted a tyrant but how can I not love him? He's so cute and he's part of our family now.

Why are all my animals the same? Mad, extrovert and out to give us a hard time! Perhaps it's us?

Up at 05.30 in the morning to the sound of the cockeral's crow, aching leg; no, killing leg and a shoulder that refuses to move. It's going to be one of those day's!
Wiping the sleep from my eyes is a joke, I never got any. I heard the clock strike every hour and I tossed and turned like I was on a spit. I hate middle age and I hate scleroderma!

My mum used to complain about aches and pains, indeed I remember thinking "I hope I don't end up like that!? Guess what? I have! I've become my mum and whilst that's not altogether a bad thing, I have an auto immune disease as well. Do you think I'm on a pity search this morning -- you betcha! I won't get any pity from my lot, not even a reference of sympathy, more a grunt of aknowledgement, "Now, where's my cup of tea" They ask. Yes I'm searching for at least some degree of "Aww" but I won't get it!

I could go off on a tangent and list all my aiments but it depresses me so I'll carry on being the soldier that I am. I sound so self pitiful but it's my blog and I'll put it in writing rather than spill the beans to some uninterested bored soul who's mind would wander elsewhere rather than listen. Even my doctor writes with head down and in a couldn't care less attitude, not that I've seen her for a while, I simply refuse to be dismissed as a hopeless case.

At least the day is bright and that's something to be cheerful about. At least the building work is taking shape, albeit slow and I have a training day at the radio station to take my mind off my aches.
My friend left me to bake a wedding cake, I say left because although it's her contribution to a family wedding -- I'm left with the making. I love the way in which she volunteered to do the cake, then asked for my help before jetting off to Cyprus. "We really need to do this cake, I'm very worried about it!" Then boarded a plane and took off! Charming! So now I'm doing it for her.

"We'll have to get the icing when I come back -- will you ice it for me -- Oh and will you take me to the shop to buy it?"

Blimey! I may as well just do it because I think I'll end up with the whole job with no credit! Why do I always end up doing things that someone else voluteers to do? Maybe I'm a soft touch or maybe I'm just stupid, who knows but a pity party won't have many guests at this rate so I won't be sending out the invites!

My second cup of coffee does the trick. I'm wide awake now hyped up on caffeine and dosed up on a second chocolate biscuit. That's my limit for today -- they're already stuck and I'll spend the rest of the day trying to swallow them. The radio station thinks I'm on a diet and then I get a well meaning lecture on how I'm slender enough without counting calories. The training day is usually an excuse to bring out biscuits and copious amounts of beverages. The one thing I'd hate to do is show off my projectile vomit skills, and if that sounds "Yuck" I can assure you it is!

"Do you never eat?" One of the presenters asked at the last training schedule. Never so near the truth anyone could be, but I smiled and made my usual excuses and apart from the questions I get about my permanently frozen hands, I get away with being "Babs the presenter" not "Mrs sick-a-lot"

You can join my pity party at the rear of my house right beside the gaping hole. You can freeze along with me, we can exchange gloves and I promise plenty of hot drinks. If you want liquid nutrition -- I have that too and a spare machine, so you see I'm well organised!

Best policy is a cyber pity party I think. That way we can all join in!