Jump to content
Sclero Forums
  • entries
  • comments
  • views

About this blog

Barbara Lowe's Life with Scleroderma

Entries in this blog


2009 --- Urgh!

So, into the new year! Hard to tell where it ended and where it began really, except for the midnight chime and a sky full of fireworks, you'd have hardly noticed the difference in our household. We stayed up -- for what? Twelve o'clock came and went and then shortly after we went to bed. I'd decided early on that I wasn't for partying neither at home or elsewhere, after all what's to celebrate? Another year of much the same or worse and although I sound like a messenger of doom, it's hard not to when the media tell us of impending gloom for 2009. This year will go down in history as the Credit Crunch era -- there's little hope out there.


We had our good times they tell us. Spend, spend, spend, easy credit, upward spiralling house prices -- cheap loans! Wait a minute, this is our fault because ....?

Just because the banks have been so greedy with our money -- we're at fault? Anyway so much for the world's financial problems -- what about us? Will they find a cure perhaps? Will they give us social security, help with heating costs, I think not! So is 2009 a year of hope as well as gloom, we'll see!


So January is under way and my daughter back at college. She got pretty much everything she asked for over the festive season and now she has her eyes glued upon February and on a dress hanging ceremoniously in one of the most expensive shops in rip off Britain! She'll be eighteen and I take a deep breath upon saying that. Has it really been eighteen years? No doubt my hubby's wallet will take a pounding over the next few weeks and grandad is already being buttered up with her soft pleading eyes as they wander over to the shop window and the pretty little number with her name pencilled on it.


I could have got a full wardrobe of clothes for the price she'll pay for one item. The need to wear something different each time she goes out is testament to her fashion conscience and appearance. The fact she'll be going out more often and legally into the club scene not only worries me but scares me stiff, remembering what I was like; now that's scary!


She'll get the dress no doubt. She already has a meal in the local Indian Restaurant booked for herself and 11 friends, we're footing the bill of course! So in credit crunch Britain we're probably propping up the economy for the early part of the year. I'm so glad I only have one child and although she's spoiled, she's not a brat or behaves like a spoiled screaming child; perhaps she doesn't have to, but she will accept that no means no, thankfully!


This morning the ground is as hard as concrete and the roads are simply treacherous. The bend on the hill directly outside my entrance is like a skating rink. I tried to climb the hill with my car this morning only to skid sideways, much to the amusement of an oncoming van whose driver did nothing but laugh as my wheels spun. I had the last laugh as he slid the rest of the way almost into the field. I've had much amusement from watching cars waltz down the hill and although I may sound sadistic, they ought to know better! This road is used as a rat run which probably takes a minute or so off their destination. The road is dangerous in normal conditions and when you get huge wagons taking a short cut, taking up the entire road width, it's an accident waiting to happen. If I didn't reside here I'd take the main route for fear of meeting one of these juggernaut lorries and since the road is never treated with salt, it's not worth the risk!


Well I've done some moaning in this blog and as I read through I paint a picture of an old misery gut which I like to think I'm not. Maybe I'm turning into one!


Hurry up 2009 and get over with but please be gentle!


New Year -- New Hope!

Much has happened in the past week. Festivities, family gatherings, and yet so little to write about! It's all been the usual traditional event and quite honestly I'm glad it's all over because at least now we can move on and look forward to spring, although looking out of my window this morning it still looks like mid winter! The old shippon is white over and the yard is rock solid, I can even see the gander's breath each time he honks -- so I'm staying indoors today.


It will be the usual array of folk in town buying copious amounts of veg and bread from the market. New year is just a couple of days away. I can't understand the panic. The shops will close for one day only, and ask if I'm guilty of panic buying too and I will invariably say yes! There's something about a crowd of people round a stall that brings out the prehistoric fight for survival in me. Am I missing something perhaps? or is it greed, selfishness or curiosity? Well whatever it is I'm there, I feel I may be missing a bargain!


You have to be honest -- Have you never done it? I'm sure you're as guilty as me, Raynaud's or no Raynaud's I love a bargain. I'll buy almost anything with a degree of excitement. Then by the time I get home, I realise how stupid I've been and then go about hiding the thing from my hubby. I once had a mad spree on toilet rolls. We had so many of them in the cupboard that I couldn't get anything else in. They lasted almost a full year and the day we ran out ---- no one could believe it!


I won't be shopping for bargains today, as I said before I'm not going out. The New year will come and go and I'm hoping that 2009 will at least see the completion of my home but I've said that before so watch this space as they say!


I hope everyone has a wonderful, or as wonderful as can be, 2009. Lets face it, it couldn't get much worse -- could it?


I was lying in bed with what seemed like a million thoughts and feeling terrible with acid reflux. The clock downstairs chimed one, two and then three and at that point I got up rather quickly as the nauseous feeling got too much for me to bear. I was lovely and warm and going into a cold bathroom at three in the morning, my thoughts were: "Better get this over quickly.''


I hate this feeling when you feel all alone, like no one cares. I was ill without a stir and although I was trying to heave quietly, I thought my coughing deserved a little sympathy if not concern, but the family slept on. I crept back into the bedroom and slipped between the sheets. Hubby snored obliviously. I raised my pillows and lay listening to a distant owl and the occasional honk from the geese. My mind went into overdrive!


"Must clear out the fridge later and some of my cupboards too. Need lots of seasonal shopping, oh! and not to forget two more presents and aluminium foil." I was thinking about all the things I still needed to do and trying to remember all the things I was sure I'd forgotten. Silly things really that didn't matter! Anything to take my mind off the feeling scleroderma brings.


Thinking back to my rheumatology appointment I can't help wondering it was a huge waste of time and quite ignorant. I was made to wait three hours until there was no one left with the occasional promise -- "Not long now!" I couldn't see the problem; there was only me in the waiting area and no one appeared to be in consultation. I'd had a list in my head as long as my arm but with one eye on the clock, it was getting close to rush hour traffic and at this time of year it would be doubly worse. I had a dilemma -- do I complain about everything and then condemn myself to a range of tests that I'm sure the staff wouldn't want to do in any case so close to home time.


The man in the blood room, put on his jacket and began to close the door. He turned with disappointment to see me still sitting there unseen! He must have realised at that point that if I was still in clinic -- he couldn't go either! I'm sure he let out a sigh as he removed his jacket and went back in without a word.


I read every magazine of summer editions, read horoscopes that never meant or amounted to anything and not remotely true! I even read leaflets on other conditions, such was my boredom. Finally, although I think they realised that they'd forgotten about me, the nurse called my name. By then I couldn't have cared less, I just wanted to go home.


I was sat in a room with a couch and gown and the usual procedure. The room was warm but sitting half naked in a gown that had no fastenings I was becoming more disillusioned by the minute. I could hear laughing and medical staff making plans of merriment outside the door but still I waited!


My feet were turning black and I began to shiver. My fingers had gone into spasm -- classic symptoms to present before the doctor! If I ever saw her that was? My fingers could have dropped off with frostbite before she finally entered the room haemorrhaging apologies! The usual examination followed with the same questions but I was reluctant to be civil and answered each question with a single yes or no! I was unusually quiet and I think she sensed that I was far from impressed!


She mentioned having infusions and a five day stint in hospital, well that's just what I wanted to hear so I abruptly said no! The usual blood work followed but I was sent in with a note saying that if it couldn't be got first time, leave it! Ugh! I'd waited eight months for 10 minutes and half a day wasting my time. I'm sure they were having a party or something because before I'd got dressed the lights were off and the place deserted -- I felt like an afterthought!


I began the long journey home, through pouring rain and tailbacks of traffic. My frustration was bursting to get out but I was driving so my concentration was very much on the road. By the time I'd got home I'd lost the urgency to report my consultation to my hubby who was warming his feet by the fire. My daughter was in her bedroom slapping on make up ready for her night out and I just felt so insignificant!


I'm up and around on a damp Sunday morning. The animals are hungry and geese peck the door waiting for the morning feast. The goats are bleating and I'm still in pyjamas. I guess the world will have to wait for me this morning.


The Appointment!

It's true to say that I hate hospital appointments! The long drive to Manchester and at this particular time of year is bound to be fraught with seasonal shoppers and crazy office party folk. I know I'm beginning to sound an awful lot like Scrooge and believe me I'm far from that Dickensian character, but I sometimes know where he was coming from.


All ready. I've made the fire, fed the goats and done the washing and it's only 7.30 in the morning! I never got as far as the gable when Max the billy goat, clapped eyes on the bucket. He was straight over, up on hind legs and in before I could move any further. I let the bucket go for fear of yet another bruise which would have looked grand upon my impending inspection later this morning -- how I'm going to explain the others is beyond me. How can I tell my doctor that the goats did it?


I have a list as long as my arm which doesn't include my hurdling over fences, grappling with runaway goats. I'm going to be sat spilling the beans on my condition, all the time thinking it's my own fault that my Raynaud's has got so bad and my arthritis is playing up, not to mention the weight loss? I don't think farmyard Olympics has helped my condition and I'm not about to mention my antics.


As the dawn breaks, I'm contemplating my journey and the day ahead! What shall I wear for instance? A jumper which is too tight round the arms will simply not do since the appointment will require blood work and I don't fancy sitting there half naked just for a blood test which will take about 4 hours to get in any case. I simply refuse to take my rucksack with me although she will ask why I'm not using my feeding tube. It's just too much baggage when driving and another thing to worry about all day and yes, it will be all day!


So I must be on my merry way! I still have much to do -- so little time! Oh how I hate hospital appointments!


Chasing Goats

I cannot run, it's hard to walk but yet the need is must

Chasing goats all over the place you couldn't see em' for dust

They ate the pen and all the fence and off they went together

Despite my frugal attempts my efforts failed to tether


They ran up the road like they were in a race

Determination upon their face

They'd seen some ivy at the top of the hill

So they chewed on it and had their fill


Many folk came to my aid

Most of em' were quite afraid

A herd of goats with horns to match

They were drawing straws which one to catch

Max is the leader and sometimes brash

He butts his head with a crash

I have to run with my keys

Before he gets me on the knees


I'm feeling tired and it's no wonder

Every fence they got under

So now I'm going off to bed

I think they consider themselves fed


Putting On The Layers

If there was ever a painted winter scene -- I'm looking at it through my window right now! Lovely as it looks, it's an absolute no,no and one only to be admired through glass and in front of a roaring fire!


I flatly refused to take my daughter to college this morning as there was simply no need, in view of my hubby having the day off. I stayed in bed, nice and warm, listening to my hubby scrape the ice off the car -- what a thought! My hands almost went into spasm just thinking about it. I guess winter is well and truly here!


First job upon rising, was to light the fire of course! So I dressed quickly, dashed downstairs passed the open gable, Brrrr! and into the front room. The fire was partially lit from last night so it took no time to get going again. I'm sitting here like a present in a pass-the -parcel game, layers of clothes that restrict my movement but keep me as warm as toast.


I smile to myself each time I meet someone who I haven't seen for a while. "My, you've put on weight since I last saw you-- are you feeling better?" they ask!


The truth of the matter is that I haven't put on an ounce, just layers but I just smile and tell then that perhaps I have! I'm contemplating going in the kitchen -- no mean feat I can tell you. Without the heating on it's like an igloo, well it is the room next to the open plan wall. I swear that the cups are so cold that you always get a lukewarm coffee and I have been warming the cups in the oven before now, much to the amazement of my hubby who thought I'd finally gone round the bend -- cooking the cups! Of course when I explained he understood but I think he has doubts about me none the less!


Fingers going numb, time for a warm drink before going out later, gift shopping!

Fire looks okay, feels okay too. Even extra layers today!


Sclero Cure?

Don't you just hate the word scleroderma. You'd think that over time it would become less troublesome or by now we would have a cure! Reading Barefut's recent blog and some of the posts on the forum makes me realise how this disease affects us personally, whether we are a carer, loved one or sufferer.


In my personal condition, I think I don't do too badly -- I could be much worse! I actually said that last week to a doctor, the one who was stabbing my arm for veins. He agreed but then said, "Well, it still isn't fair." By that he meant, no matter how you are affected scleroderma isn't fair!


I suppose I could be well and moan about a cold and in that perspective, sclero isn't fair, but when I look at other people with terminal diseases such as cancer, I count myself lucky in the grand scheme of things! I suppose it has a lot to do with a positive attitude, supportive family and good medical care. It can get rough when any one of those lets you down and goodness knows I've been there too!


20 years ago it was a misdiagnosed, uncommon illness which hung on doctors lips. Now there is much more awareness of the condition -- I've noticed that when in hospital. No longer is it greeted with "What?" but "How long and how does it affect you?" I guess it's taught at medical school and thank goodness the nurses know about it too.


To find a cure we must create awareness and understanding. Never be afraid to raise your head and spread the word. Text is a beautiful thing but word of mouth is much better.


Together we'll find a cure!



I'm sick of queues -- The bank, shops, and car parks! Has no one got anything better to do than stand around or panic buy. I found myself trudging the market for jerusalem artichokes, finally finding them tucked away in an unlikely last resort high street shop. No doubt there will be a national shortage of carrots, brussel sprouts and gravy browning by next week and every frozen turkey replaced with empty spaces all because some folk think that if they can't get a fresh one, an old tough frozen bird will do.


Last year I was frantically trying to find cornflour for a sweet sauce only to get home washed out, with tired aching feet and a sunken heart. Then, would you believe, I had two packets of the stuff at the back of the cupboard! This morning was particularly frustrating because I'd got up extra early to catch the bargains, only to be taken short on the way to town. I diverted my vehicle in what became an emergency and raced for home. My stomach churned, and then I was off again! By the time I'd got to town -- no parking spaces, urghh! and a spotty faced gentleman took the only one left -- he snuck past me and stole it from under my eyes. The word gentleman did not come to mind!


I drove around for a while all the time I was foolishly thinking all the bargains would have gone by now! So what does that make me -- as bad as all the rest I'd say! All I wanted was something for my friend who has everything, my daughter who has nothing (in her assumption) and my hubby who insists he doesn't want anything every year and who is first downstairs on the 25th shaking all the presents and searching through the gift tags. He mumbles "Mmmm socks, pyjamas, slippers!" Why do I bother to wrap them?


I'll get the usual cookery book by yet another celebrity chef, all very acceptable since I enjoy cooking but rather insulting that I can't eat! I may get chocolate Brazil nuts, great sucking all the chocolate off and no, my hubby does not eat the nut as my friend once suggested!


Nowhere near finished my shopping and I have to say that I'm so unprepared this year.



Sorting out the attic was no easy job to do

Things we never knew we had, things old and new

The festive decorations in boxes full of dust

And even poor old reindeer, it's horns were full of rust


The house was looking boring as all the others shone

If we didn't get a move on the season will have gone

And though the lights were working, they were in a tangled mess

You'd need a degree in science or physics to straighten out no less!


My silly hairbrained hubby decided today to put them up

So with ladder under his armpit he dropped hammer on his foot

The lights were wrapped round his torso, like a fairy frock

I hope the electric's off coz he'd sure be in for a shock


He clung on to the gutters and placed each little light

"These should be a picture when I turn them on tonight"

His acheivement and satisfaction was written on his face

"They should be able to see these from somewhere out in space"


So now I have a light show, a grotto inside and all

My house like a wonderland but still no bloomin wall!

We could put a bit of tinsel around that great big hole

Perhaps a tree and presents and reindeer and a foal


We could have a festive gala a cabaret, a show

You can see our house for miles, through the gable end Y'Know!

Still, the geese will have a party, the chickens and goats too

Festive fun for everyone though they won't have a clue!


The indoor lights weren't working, we went through every light

Took them out and blew them and screwed them back up tight

They were lay across the living room you couldn't see the floor

But none of them did their bit so we'll have to buy some more


I do not know the difference between LED or not

And I couldn't remember the colour-- I simply forgot

Was I to get twinkly ones or ones that looked like snow

One's that did a million things that send you to and fro


Ones that flash like beacons and all at once go mad

They were the craziest display that we ever had

In fact the cat went silly as it watched from the floor

She was quite excited, till she could stand no more

She leapt to try and catch one but it got away

Kept her quite busy for the rest of the day


So off I went this afternoon to purchase some new lights

I'm really quite mesmerised by all the twinkly sights

I stood with finger on bottom lip wondering which to pick

I watched them go in and out and began to feel quite sick

It was all becoming silly and I had to choose a set

It was almost time for dinner and I hadn't been home yet!


Finally I saw them decision made they're mine

180 LED lights I think they will be fine

My hubby will be busy, as tonight we will switch on

A festive end to this year and one I'm glad has gone!


Childhood Memories

Although winter holds a sense of dread for me, I can't help reminiscing of a time when the first snow was greeted with a degree of excitement -- I'm talking childhood and pre scleroderma!


My gran used to build the fire high and there was always a pot of something warm in the kitchen. I can see it now, clothes airing by the fire and the lovely warmth they provided as you slipped them on. The bread would be rising at the front of the fire too and the smell was, well just wow! I smile to myself thinking back to those years when I was cared for and had no responsibilities, except for a Guinea pig and a cat. I merrily skipped off to school with a friend and if there was snow on the ground we slid and threw snowballs along the way.


The school smelled of old wood and polished floors, but the warmth hit you as you walked through the doors. The old headmaster stood beyond and greeted each pupil one by one, slapping the occasional child across the ear for an untidy uniform, over zealous behaviour or a tie knotted loosely. The doors closed and if you weren't in school by then, there'd be someone to pay!


There was fidgeting as the snow fell, each child eagerly waiting for the mid morning bell. The boys whispered making plans and the girls moaned fearing their fate. Of course the teacher knew this and delivered a stark warning to all before leaving class -- "No snowballing."


The bell rang and chairs scraped across the floor. Everyone pushed and shoved through the door and coats and hats were whipped off the cloakroom hangers so fast that they only managed one arm whilst the other dragged the floor. "Splat!" The first snowball came and hit the wall. Everyone ran for cover and quickly gathered up handfuls of snow -- soon it was all out playground war.


I can see their faces even now--- bright red with runny noses, and little Gerald was purple. His glasses crooked, hair wet through and looking a proper mess by the time we went back in. The teacher stood, chalk in hand scowling at everyone.


"I hope you can all write now and if you're cold then it's your own fault."


The end of the day as the lights went on at 2pm. Soon we'd be on our way home and when the bell rang we left school like ants leaving the nest.


I knew when I arrived home that there would be a warm fire. I passed many houses along the way with smoking chimney pots. The smoke rose straight into the sky you could almost climb it and everyone young and old spoke to you along the way. I walked through the door and was greeted with hugs, it mattered that you'd come home and you were sat in front of the fire with a warm mug of cocoa or malted milk. My gloves steamed and my fingers tingled. My gran would disappear into the kitchen and come out with a piece of warm home made bread drenched in butter, and that to me is just what life is all about!


I used to kneel on the couch looking out of the window. My gran lived in town. Many people walked by her house on their way to and from work in the cotton mill. Some used to knock on the window as they passed by and some used to pull funny faces at me and they made me laugh. The butcher across the road used to beckon me to pick up an order which was waiting for my gran. You could cross the main road in no time at all because in those days cars were a luxury and you didn't see very many. I'd get a sweet from the butcher and his favourite phrase was.


"Get that inside you -- what sticks to your fingers, sticks to your ribs"


The old ones had a phrase for almost everything. My grandad used to say "If you go into town on New Year's Eve you'll see a man with as many noses as days left in't year."


It took me a while to work it out and I always looked out for this man with hundreds of noses. How silly was I?


When the festive season came round there was so much joy in the household. Everyone was welcome no matter who you were. The table was packed full of food and my grandad used to hurry home with little tangerines and chestnuts from the market. You never saw these at any other time of year so they were special. He'd sit there plucking a turkey or goose which he'd carried, almost dragged home and it was huge. My gran always said "How am I going to get that in the oven" But she always did!


The festivities lasted a whole week and by the end of it you were sick of turkey, chocolate and loose bowels from eating too many tangerines. The TV was black and white and the radio was still favourite in my gran's houshold! I played with my toys, my gran knitted wooly jumpers and grandad went to the pub.


Back to the reality of today. Those houses where my gran and grandad lived all of their life is now a car park. The shops although still standing are nothing more than charity shops -- no butcher. The road is busy with a constant flow of traffic and people pass by without a stare or greeting. Gone have the coal fires, the school and the old mill where all the people worked. Gone too have the values of the old ones and the foundation of a loving family who had nothing but gave all they had none-the-less.

Tangerines, you can have all year round. Frozen turkeys or ready dressed fresh ones. No one bakes bread any more. Children don't play outside -- computers instead! Teachers are shown no respect and toys are nothing if they don't involve sitting down or being competitive.


We had nothing, but y'know we had everything we needed. Ask me if children are better off these days and I will say no! because my childhood was special in lots of ways and they don't make them any more!


Hugs for Serena

Oh Serena! How I hate those days and cars that don't behave. I guess they need TLC too, only difference is they can be fixed -- we, on the other hand can't.


I've had those days too so you're not on your own. I mean C'mon how many out there haven't. It must be hard holding down a job on top of everything else and that kind of makes me glad that I opted out of the rat race some years ago. Of course it's different for me I suppose, the salary comes in no matter what, even if my contribution wouldn't feed the fish!


Sometimes I feel used and completely on the scrap heap. Not good enough to work but good enough to maintain family harmony, as long as I do my bit. I'm not excused from making dinner, even though I don't eat. If I ask for help with chores, I'm quickly reminded of my position -- I don't work!


If the car won't start -- it's probably my fault according to my husband, I mean, can you actually do anything other than turn the ignition on that would make the car die a death? If it won't start, it won't start, end of story! I hate the accusation that follows, usually it begins with "What have you done?" I'm tempted to resort to a hammer and chisel and stand ceremoniously over the engine and say!


"Oh I smashed a couple of things because it didn't start up first time"


Garage bills are always the result of my lack of maintenance and the last time my car was in the garage, that was my fault too! Someone reversed across the road and hit me -- so my fault for being there perhaps?


Yes I empathise very much with you. How do you cope, carry on, keep positive? The answer is you just do!



With this condition you learn to become patient, like it or not! You become tolerant too with the old saying "Good comes to he who waits!" I was all that yesterday as I sat in our local hospital emergency dept. If there was going to be an annoying fellow individual then the odds were that she'd sit next to me-- She did! It was instantly obvious that she was a little drunk, well it was 2.30 in the afternoon and rather apt that I should be suffering with tooth -- hur-- tee don't you think?


Not to laugh at really because I was in some agony, in fact excruciating pain that almost had me in tears! I'd checked in at reception looking like a Zombie, feeling a bit like one too. How on earth I managed to drive to the department is beyond me. I was in a daze and totally oblivious to anything but this horrible ache in my jaw.


I sat in crowded room with my head down. I thought people were staring at me so I became quite paranoid. Children ran around the room, parents screamed at their kids, magazines everywhere and aggravation all round. There were people limping, holding faces, groaning and then this one who plonked herself down with such lack of grace that the draught nearly blew me off my chair. Her breath nearly cured my pain until she elbowed me in the chest as she nearly fell off her seat.


"Oh boy do I get em!"


I was on the verge of going home. I'd been sat for an hour without being seen and listening to others saying they'd been there hours already, my heart sunk! The lady beside me began to fidget and rummage in a plastic bag. She turned to me and asked if I could listen out for her name as she needed the bathroom. I hesitantly said yes, and she got up very shakily and stumbled towards the door.


My name was called -- thank goodness, I thought. I was shown into a cubicle and sat down to be questioned and assessed by the nurse who looked like the end of her shift couldn't come any sooner. I explained my pain and then she asked if I had any other symptoms or illnesses. Well where do you start? I told her briefly about my condition and was quite surprised to learn that she knew all about sclero, Raynaud's etc and wasn't particularly phased about my tube. I explained that it wasn't working and was due to be changed early next week, so I was having trouble getting pain relief since I couldn't swallow tablets or drink dispersable ones because they made me sick.


"You are in a predicament love, aren't you? You look very pasty and weary, do you feel unwell?"


"Well I don't feel great but it's more with pain and tiredness than with ill."


She checked me over and told me to sit back in the waiting room and a doctor would see me shortly. I returned to my chair since the lady who'd sat beside me appeared to have left or was being seen by the doctor. I was a bit disappointed to see her stagger back to her seat clutching the plastic bag as before. She began to bother me. Talking into my face, nudging me, asking about my condition and asking if they'd called her name. Everyone by this time had realised that she was taking something and an air of quiet went round the room. I felt as though I was on centre stage -- was they looking at me or her? I was being completely paranoid, most unlike me!


Finally I was called by the doctor and placed in yet another cubicle where I sat feeling dreadful and wishing I wasn't there! I went through all my symptoms again as he stood over me.


"Have you looked in the mirror Mrs Lowe? Have you seen the swelling over your cheek bone?"


I'd not been in the mood for mirrors of late except to comb my hair so the answer was no!


"I think you have an abscess under your tooth" He said as he examined the inside of my mouth.


"Yes it's infected your gums and roof of your mouth. It will make you quite poorly if left."


I felt annoyed because I'd been to the dentist not two days ago and he told me there was no sign of infection or an abscess! I'd suffered for over a week when it could have been sorted much sooner. I thanked the doctor and left with two bottles of liquid antibiotics and painkillers. I walked through the waiting room were an argument had broken out with the lady beside me and several other people who simply weren't in the mood for her antics.


Now I have to work out how to get the antibiotics in --- down a tube that is kinked and only works intermittently.


Today as I write, the pain is still there. It looks like winter outside and I'm about to attempt a dose of medication. Wish me luck.



What a week so far, please don't tell me it's Friday. I've pretty much sat around all week feeling sorry for myself and doing little about it! May I ask what to do if you have the worst toothache imaginable and your dentist can't fit you in for an appointment? Well, I decided to ride it out but then hit another major problem -- my feeding tube is blocked.


So I contact the hospital who in turn can't see me until today (Friday) Meantime I'm pacing the floor at night with what feels like someone ripping my face off and sticking a pole up into my brain. Oh me and my exaggerations but it's just how it feels -- agony!


I've always looked after my teeth until sclero decided to do it for me! Now my gums have receded and I think this is the problem. I was fine when the dispersable paracetamol was going in with ease down my tube but when it blocked I had a fountain of water and I leaked like an old bucket! I lay awake most of last night and the night before that, moaning and trying to bury my face in the pillow, but it throbbed relentlessly and I'm not an happy bunny!


My quest for today will begin with getting my tube sorted out at the hospital and then, I think, a face off with my dentist --- he either sees me now or I ain't going nowhere! I simply refuse to take any more of this pain when there is no need. My set appointment was for the 17th Dec anyway for a check up, so I can't see the problem. Surely a bit of overtime won't damage his huge pay packet and goodness knows I've contributed to that over the past two years. I think he sees pound notes in my fillings not mercury. By the time I die my mouth will be worth more than gold in scrap metal.


With the holidays creeping up behind me, I need to give myself some TLC. The festivities will not happen if I'm not at my best. I have 10 members of our very small family coming for dinner with not enough chairs to go around! I worry about seeting arrangements whilst my daughter puts things into perspective like, no gable end, slippy drive full of goose poo and with only one room useable for a gathering, well I think who's the sensible one here? I'm planning a meal, she's being methodical.


Looking out of the window reminds me to get my skates on, it's looking decisively seasonal. I'm having my second Raynaud's attack of the day and there's no way I'm going outdoors for fuel. The family are still in slumber and I'm waiting for the water to heat up for the bathtub. I'll have to be on my way up the very busy motorway soon -- not looking forward to a stressfull journey and an aching jaw! I'm not looking forward to all the jiggery pokery when I get there. All in all, lousy week!


Just Manic!

There I go again -- me and my big mouth! I can't help myself from volunteering my services for almost anything. I've got myself into cooking 100 chicken drumsticks, 200 sausage rolls and 200 vol au vents! What for? you may ask! Well it's our annual radio presentation evening for which I've been nominated for an award. Don't jump for joy for me because it's nothing too special, in fact everyone at the station gets one and without sounding ungrateful, I suppose I'd be upset if I was the only one without. So I shall accept with grace!


It's a community radio station with no funds to spare. We have to raise our own to keep going -- hence the buffet, cooked by me and others of course! It's a tricky operation and a bit underhanded because I'm meeting Carl our Jamaican DJ at the chicken stall -- hopefully he'll have a bag of drumsticks for me! He's making a curry, or in his words "I'ma Mackin-a corry" He's so sweet, I love him dearly and I can't wait to have a taste of his speciality. Of course that's all it will be but I'm looking forward to it all the same!


The Pixie outfit looks promising for this weekend's project. I've been a busy bee this week because sitting on my table is a cake for a baby naming ceremony which takes place on Sunday. Me and my big mouth again you see! "Oh I'll make your cake," without stopping to think that I may have enough on my plate, but that's just me!


Anyway, that's all done now and waiting to go and this weekend will see the last of my voluntary predicaments over and done with. I'll try to keep my big mouth shut, especially as it's getting close to December and I'm afraid that's just wild!


My daughter is convinced that I've lost my sanity! The geese turn me into a raging maniac in a morning. They chew my window bottom and nibble my door, much to my annoyance. The noise they make reverberates throughout the house and after listening to their constant honking -- I just lose my head! Yesterday they got to me so bad that I flew into the kitchen, grabbed the sink bowl, filled it with water and chucked it at them, shouting and screaming!


"Mum, calm down -- leave then alone!" my daughter pleaded, but I was on a mission and I had it in for the gander who by all accounts hates me and vice versa! The dog ran round in circles until one of the flock or gaggle, let's get it right, nipped her on the back and she shot under the car for safety. Well they all kicked off again just as if they were laughing and this infuriated me more. Of course when my hubby came home, he got an earful from me.


"Pen those insane critters up before I behead them all and roast them for dinner!" I exploded. "They make loads of mess and I'm scared to walk outside because it's so slippery!"


My hubby goes through life without a care and he just shrugged his shoulders and commented, "What can I do, poor little geese!"


Y'know he bought an electric guitar -- yes! electric guitar. What for? well to play at the festive family gathering. One problem though -- he can't play a note, neither can anyone else so we're going to end up in some noise with wannabe rock stars as well as my daughters electronic game and, of course the geese, if they're not sitting cooked on my table? All we need now is drums and we have a quartet since my daughter already has a keyboard. "Oh save me someone?"


This week has been hectic and I'm glad to see the back of it! Next Monday will be the start of a new me -- no volunteering, no getting stressed, being nice to my geese, goats, chickens, dog, cat and hubby, and being a good little wife sewing in the corner -- roses round the door? ------ NOT!, NOT!, NOT!


Give Me A Cushy Job!

I'm not going to complain today -- I'm beginning to sound like a grouch! I should be contented with everything I have rather than have not! and I should be thankful that my condition is not as worse as others and that is a very good thought!


I have been rather busy though. I remarked to a friend that I would probably be better off at work and she agreed remembering her own time at home! I do much more than would be expected of me. Maybe it's the amount of work I do that keeps me well or away from dwelling about what's really going on!


I'm off to collect my Aunt from a nursing home today. I manage to see her every two weeks, the reason being she's so far away. My Dad moans "Your'e doing too much lady" but expects the same treatment as always, running up and down to his place and making sure he's okay. He's on the phone 14 times a day if not and the recent exploits with my phone just make my day unbearable.


I have my instructions for my daily routine. My daughter got out of the car this morning departing with the words "Three o clock today mum" and then swanned off into college, keeping her head down in the wind. I arrived home and negotiated the drive -- the best way of walking up it without slipping. It's so slippery due to the bad weather and dirty geese. I've fallen too many times lately and it's no fun believe me. By the time I've made it to the door, the goats have got there ahead of me and wait for bread, unmoving until they get some. So by this time I'm on auto pilot -- walk of fear, bread for goats and geese, let chickens out, make fire, feed the cat and do the housework!


The phone rings just as I make through the door with a request for shopping for my dad. I'll pick up whatever he needs on my travels and somewhere between here and there, I might just have time to connect my feeding regime, if not it's boiled sweets for me!


If I had a job, I'd know exactly where I was each day. I'd make time to do the things I needed to do because I wouldn't have time for anyone else -- does that make sense? Of course those jobs are few if any. Who would employ me for a start? It would have to be a 10am start, a sitting down job with frequent breaks, above average working temperatures, and a very understanding boss! Sounds ideal to me and I'd get paid for it! -- Give me a job!


Better get on with my day much to do, plenty to see!



I awoke to find a big yellow thing in the sky. It took me a moment to recognise it and I almost reported it as being a UFO. Of course after the initial shock, I was pleased to put it down to the sun, Y'know that big orange star in our galaxy -- I presume it's a star and not a planet, least ways it's a star to me whenever it makes an appearance!

It made it's entrance today, right in time for the local market which was a complete wash out last week. I needed some material for a fancy dress that my daughter wishes to wear over the festive season. I don't know anywhere as cheap or of better quality that our little market so I was quite pleased when I saw the little man standing at the stall.


The trouble with market day is that it attracts so many people, especially if the sun is shining, that it's so difficult to park. I go early to avoid the rush but it seems no matter how early I arrive, the car park is always full and I have to walk a marathon to get there. Well, with my little car parked up further away than anticipated, I was quite miffed when I noticed I'd left my disabled badges at home, so now I had to walk to the ticket station to buy one which was another trek across the park. I sighed more than once and when I had to queue for the machine as well, my impatience grew ever thinner.


I needed to go to the bank for cash and then found myself in another queue. I had young lady behind me who was trying to cripple me with her baby's pram as she stuck her face in a book and rocked the baby to sleep. I let out a huge sigh and the people in front turned around and gazed at me to which I just gave half a smile and nothing else. By this time the back of my calf was becoming quite sore as the young lady rhythmically bumped it with the pram, much to my annoyance. I thought that if people moved forward slightly, she may just hang back a little but to no avail until finally she hit me so hard that my leg almost went from underneath me and with an apology she put down her book and stopped moving the pram back and forth.


I was next and just as the customer went away, so did the cashier, Arrgggh! I was in no man's land, not in the queue and stuck between an empty till and one which was about to become vacant -- should I quickly dash to that one? I thought. Too late the young lady with the battering ram was already there and I was left still waiting for the cashier to return! Finally she made her appearence with "Sorry" and then I had to move to one side as the battering ram and young lady squeezed past on exit. I got my cash along with numerous questions about who did my car insurance, life assurance and savings. I had no time to discuss my personal finances, so I just grabbed my money and left.


Back to the market and I managed to purchase the material. It had gone up slightly in price since I last enquired but I'd lost the will to live by now and the sanctuary of home seemed so welcoming.


At least the sun is still shining and I drove home feeling a bit frustrated but tingling with excitement as I planned my next project -- Pixie costume. I'd picked up numerous items from the local supermarket, a bag full of bread for us and the geese. I had four bags in total in the car and when I pulled up to the gate, I was greeted by a whole farmyard of animals.


I opened the gate and drove slowly up the drive. The geese were in front, goats at the side, dog at the back and the chickens were running everywhere! I couldn't get out of my car and Apple the grey female goat stared through the window but was more interested in the bags she could see on the back seat. I could see what was going to happen if I got the bags out, so I left the car and went indoors until they'd all lost interest.


I opened the front door with my key -- why I lock it, I don't know because I could just as easily come in through the gable end, but as I entered the phone was ringing and so was my mobile -- which do I answer first? I decided to answer my mobile because my phone had already rung 3 times and I only had two more rings before it went off, so I left it and answered my mobile. Whoever it was on the phone would probably ring back or leave a message I thought!


My hubby came home shortly afterwards for lunch and remarked there was no fire, no lunch and asked what I'd been doing all morning. Before I blew into a rage, he laughed as he saw how frustrated I was.


"Bad day dear?" he asked


Well at least the sun shone and still shines as I'm home alone thinking about getting my bags out of the car. With coast clear of animals I'll make a break and bring them in without being mobbed.


Strange! -- if it had rained my day would have been much more peaceful!


Raynaud's Dance!

Rubbing my hands and stamping my feet -- no! I'm not doing a nursery rhyme dance but the Raynaud's Jig! I'd run on the spot but I'll give that a miss seeing as I'm stood right besides my car which is displaying a blue disabled badge -- what would the other drivers think of me:


"Oh yeah, bet those badges belong to someone else?"


Well I kind of wish they did and they can have this disease as well! I simply hate the cold but what choice do I have living on a rain soaked island that has forgot to order the sun. Pity it didn't forget to ask the rainman to cancel the last order!


You can probably tell that I'm about to moan again! Why not? it's all I seem to do these days, if it's not the weather, it's the institution! and if I hear the word credit crunch once more, It would be more than once too often.


Fact is, people are spending money everywhere as if to show the world that there is no shortage of dosh. The stores are full of seasonal stuff even though the outlook makes grim reading. My daughter still persists in asking for the latest gadget, which is constantly out of stock, much to the dismay of many who have resorted in placing their name on a list just in case there is a delivery. How do I know this? -- well I'm one of em! I thought those days were over but it seems they are not and I still find myself chasing my tail throughout November and December, hence the freezing extremities and risking pneumonia!


Back home, I sit beside the fire building the flames higher and higher. If I sat on top, I'd still feel as though I was on an ice cube. My whole body is cold and I mentioned to my hubby last night as we lay in bed that even my esophagus felt icy cold like I'd been eating extra strong mints. Of course he was so concerned that he cuddled me and offered to fill a hot water bottle -- not! He just turned over and continued to snore with a little grunt which showed he'd acknowledged my moan but wasn't that concerned!


I'm going out tonight --- oh no! Do I really want to? The answer is no, not at all. I can't be bothered getting ready or going outdoors again to some draughty pub and drinking fizzy liquids. I feel so odd asking for a coffee and I get some funny looks too.


"Hey this lady wants a hot drink -- get her! Comes to a pub and thinks it's a cafe, what a dweeb!"


Of course that's my over active imagination, but I don't think I'm far wrong. Everyone will be laughing at something which I just don't get! I'll join in and hope no one asks what I think because I don't know what I'm laughing about anyway. There was a time when I would have found a drunken observation highly amusing but all I do nowadays is sit there with eyes like dinner plates, hyper on caffeine! I'll arrive home, bouncing off the wall with self inflicted insomnia, and there goes my hubby snoring again!


I'm already making excuses, but I have to go because it's an important meeting. Perhaps I'll slip away early, right after the second round of nuts -- Mmmm, that sounds good to me!


Give Me A Break!

Saturday morning already -- the weeks are just flying by. Soon it will be the end of the year and what do I have to show for it? We never did anything constructive this year, it hasn't been memorable in any way what-so-ever. In fact it's probably just an extension of last year and the year before that without any defining break.


The weather has been awful, my house is, well, still not a house, rather 4 rooms in a field, and there I go complaining again! I wonder how others would cope? If I base my assumption on my sister-in-law then I suppose I must be the most patient and uncomplaining person on the planet. She complains to me from Australia, it seems that she can never be too far away!


I hear, "You never complain about your illness!" from my friends. In actual fact I have much more to complain about than that, maybe that's the reason I don't. This will be the third year in our 3 walled humble abode. I've adapted so well that having 4 walls, a stair rail, doors which close properly in a monsoon, and a proper central heating system will be luxurious and overwhelming! It will seem strange to get up in the morning without a goose on the first step of the stairs, or a goat sticking it's head through my kitchen door. If you think that's a terrible scenario ---- for me it's normal.


Of course no one understands that but if they'd lived in a tin can for 4 years in cramped conditions and through one of the worst periods of their life, then moving into a half finished house was sanctuary at the time. Putting that time into perspective I don't know how I coped with being so ill, on a feeding tube with nurses attending most days. To have pancreatitis so bad that I collapsed, when the gastro consultant told me it was just surgery pain -- well! how do you cope?


I dreaded the nurses calling and worst still the dietician who was scared stiff of dogs and other animals. I had to escort her from the gate to my trailer and then back again to her car, no matter how I felt! The day I collapsed in agony, the ambulance arrived. They coudn't get a stretcher in or out of the door and the poor paramedic had to carry me. The drive was overgrown on the wayside, the ambulance was wider than the drive! We arrived at the hospital with half a field of weeds wrapped around the wheels. My hubby followed on and remarked that he just needed to follow the trail of greenery strewn all over the road to find me -- how embarrassing is that?


We felt like the Clampetts, Steve in rubber boots and the most awful jumper used only for outdoor building work. I'd been so cold that I had on more layers than an onion -- then there was the goose poo all over the hospital floor, not from us but the paramedics who'd stood in most of it. My blood pressure soared from the embarrasment of it all; I just wanted to leave!


We had a nice life once, so where did it all go wrong?. A lovely cozy house in town. Friends who popped in and out for a chat -- no animals except Tropical fish and I had my business. We all left at the same time each morning, and all returned together. I had my young daughter in a local school and life was just rosy except for a minor problem with scleroderma. I'd had my ups and downs with it for sure but nothing like the problems I was about to face in the future.


So it's almost the end of November! And here we are stuck in a rut, in fact a bit worse off than last year since we took the wall down. We keep hoping for better weather; all we have to hope for now is just a dry spell but nearly every day it rains. I can't even say "Roll on summer!" I said that last year and we're still waiting for it!


Please give me a break someone!


Should I Just Scream!

Okay, enough about the exploits of my telephone problem -- I have much more to deal with than that if I put it in perspective! I awoke this morning feeling like I'd been hit by a double decker bus and then scraped up off the floor with a road sweeper's brush! All right that was a bit graphic and over the top but you know me?


My situation bears the fruit of no sympathy so I don't bother to mention that I had my head over the toilet for most of the day. It's like being pregnant all over again and I remember the first 3 months all too well. When the family come home, I'm my usual perky little self and I went about the rest of the day looking like I had an hangover.


As a nation of complainers other than the weather where there is much to complain about! I think we don't complain enough. I realise that if I had a full time job I would succumb to many injustices this wacky world has to throw at me! Am I a lone soldier, seeing as I'm home all day with nothing better to do than have a go at the institution? I just don't have rose tinted lenses, I'm afraid, and I can see around the corner much more clearly than most.


I knew I couldn't go any further without mentioning telecommunications. Yes! I have a mobile phone which confuses me each time it rings -- well it doesn't ring actually -- I have The Puddy Cat Dolls doing their stuff whilst I fiddle with the controls in order to answer.


Text messaging -- What is that? My daughter has lost the art of reasonable conversation and her spelling along with it. I always spend an unprecedented amount of time deciphering her words trying to make head or tail of it. I mean what does this mean: Mos cya L8tr @ cos, tb, lvya st lol? I need a book, it certainly isn't English! I lose patience just listening to the click, click, clickety, click as her fingers tap at breakneck speed on the keypad.


"Will you give it a rest you're jarring on my nerves!" Then it vibrates on the table which sounds a whole lot louder than it should. I ask her not to text me because if it's anything to do with picking her up from college -- by the time I've ingested and understood the words, I'll be late for sure!


Feeling better by the hour. I'll be fine before bedtime and then it will all start again tomorrow. Oh, I love my disease!


The Telephone Man!

My telephone infuriated me so I thought I'd write a rhyme

The problem was it's ringing and couldn't get there in time

I had to do a marathon to answer an important call

But it just rang 5 times and that was it! --- that's all!

I complained to the company who gave a silly excuse

I told them 5 short rings for me were simply just no use

So they told me there was a charge, one I thought was free

My telephone bill is enormous without another fee!


For seven rings it will cost me ---- just two more rings I ask?

Well it's £7,50 per quarter, Ugh! even Dick Turpin wore a mask!

It's the rate my dear and if you don't want to pay

I cannot help you further so have a nice day!


Well, I gritted my teeth and grew ever mad

This was the worst excuse I've ever had

It's my own phone and I own the bell

What kind of service are they trying to sell?

My phone can ring just seven times and then that's my lot

For every ring thereafter the bill will start to tot

I rang the head office to explain my little plight

And spoke to a gentleman to put things right


You say you are disabled and the phone is far away?

Well move it closer to you and then went on to say

I wear spectacles because of my failing sight

And my optician charges me extra--- allright!

So why should you be different just because it's you

It's not my fault your telephone get's you off the loo


I could not believe his attitude, this guy was mocking me

If not enough to be disabled, he tells me he can't see

To mention his predicument, and to mine he compares

I think he needs binoculars and a few more extra pairs

He said the phone is a luxury, and I should be in awe

That 7 rings are chargeable and that is the law!


So I reported him imediately for his arrogant attitude

I was greeted with apologies for him being so rude

He really shouldn't have said those things

But all I'm left with is five short rings


The gist of it all is evidently clear

It kicks in when I'm not here

And if I can't make it to the phone

People think that I'm not home

My husband is sure I'm having an affair

Each time he rings I'm just not there!


Better get a mobile phone!


Phone Misery!

Yes my head is ringing -- not with the sound of my telephone but with a rather disgusting response from my phone service provider. My last blog explained my position, but the events that led up to my complaint was much more intense than just 5 rings.


I was upstairs in the bathroom. The phone began to ring downstairs. I pulled my pants up, barged through the bathroom door, slid down the banister rail, threw open the French doors, leapt over the couch, hurdled over the table, jumped over the cat, dived on my phone and it stopped --- Not!!!


That's what I imagine my phone company would expect me to do, although I kept my elaborate thoughts to myself! Well, I went through the series of options again. Not one of the options related in any way to my complaint. Totally fed up with chasing my tail, I rang the telephone regulatory commission, not satisfied with the excuse I'd been given previously. They were very helpful and gave me a direct number to the inner sanctum that was not contaminated with robotic voices!


I dialled the number and a rather sad and forlorn sounding voice picked up and in a long drawn out drone, introduced himself as a representative of the company. I honestly wanted to wind him up in the turn of a key sense, not in the wrong way! But when he listened to my plight and through the many sighs he kept periodically blowing out, it was clear that he had no intention of listening with any sympathy.


"You have a free answering service for which there is only provision for the phone to ring 5 times before the answering service kicks in," he droned.


"Yes I know but is it so difficult to change the length of the rings to more than 5?"


"Not possible Ma'am -- you have to pay for extra rings!"


"Well, I understand that you charge but I think it's unfair when people like me and the elderly find it difficult to do a pentathlon each time it rings."


"My dear! I have spectacles and I have to pay for them," he retorted


"What? -- You're comparing a disability to wearing specs? -- I wear them too but if they didn't suit the job in hand, I'd complain and not expect to be charged for any slight adjustment!"


I could not believe this man's total arrogance in an explanation that only served to infuriate me further. I reported him to the commission and they were just as annoyed as I was.


I'm considering changing my supplier and fixing myself up with a phone that I can carry around like my mobile -- No more leaping over obstacles for me.


How infuriating.


Seven Rings -- Kerching!

I scratch my head in disbelief. I'm rubbing my head with red tape and a sense of pure idiocracy. Just read on .......


My telephone company, a nationally recognised business, and for integrity purposes I've been with them for as long as I can remember!


Well it all began today when for the umpteenth time it rings just 5 times before the answer messaging service kicks in. Now, unless I can run the London Marathon in record time -- I simply cannot get to the phone from the other side of the house in time to answer it. Simple you may think? -- have another line put in. Well yes that's an option but before doing anything so drastic I thought it best to contact the company to extend the amount of rings it does on the line.


I spoke to numerous people who weren't really real people because it was automated. I went through every number on the keypad, finally succumbing to an option that did not suit my needs. Argrhhh! I screamed in despair. I tried once more after calming down with a quick coffee and chose any option just so I could speak to a living breathing soul who may, just may, be able to help me with my plight.

I hit success when a guy answered and I began to explain my problem with 5 rings not being enough on my line.


"Madam" he said! " 5 rings is standard you cannot have any more"


"What, you are telling me that 5 rings is all I am allowed?"


"Yes ma'am -- you can have 7 but it will cost you £7.50 per quarter"


"£7.50 for two more rings" I asked


"Yep that's right"


I was struck with silence at that point because I could not believe that my telephone is not allowed to ring 7 times without charge.


"Excuse me but, I can't run to the phone, I'm disabled actually and 5 rings is not enough. Do you know how many calls I miss because of this?"


He went on to explain a rather bizarre charging system which would increase my over extortionate bill even further.


I cannot believe the cheek of the matter. How can they warrant charging so much for two extra rings. It's my phone and my bell -- if you want to get picky! And if I have to drop everything and run to the phone to save £7.50 I will. Surely an unfair, bewildering system and there's a letter in the making as I write.


Simply weird.


Smile For Raynaud's

Batten down the hatches, bring out the winter attire

Put on the layers and move closer to the fire

Don't go out in the wind and rain -- for sure a blue attack

Before you've even got there you'll be wanting to come back


You'll be wanting to drink plenty - no ice or fizzy juice

With fingers gone into spasm they won't be much use

You'll curse your condition, how it spoils the fun you have

And for a little spot of cuddling, your hubby will need Sat Nav!


You sit in an office waiting for the nurse to call

Looking at the ceiling and staring at the wall

This place is cold and lonely I'd go home if I could

I know I'll be ages coz the vampire's after blood


I hope the one they send me isn't a trainee nurse

I'm not really moaning but it couldn't really be worse

My veins are very choosy and just a little shy

I find I make excuses, for each time they try


The fifth time of trying, the nurse begins to shake

My arm is full of pin holes and both begin to ache

She got a little spot of blood, I ask if that's enough

But I have so many tests, they simply need more stuff


The attempts are now too many and she admits defeat

So I go back into the waiting room and sit upon on a seat

The room is full of strangers, a woman starts to smile

How long have you been here? -- I say well, quite a while!


We begin a conversation and I suddenly realise

That they all have sclero -- What a surprise!

Put the heating on full blast we're having an attack

Someone left the door open and didn't put it back


The life and times of a sufferer, sclero is the pits

I never feel beautiful, never get out my bits

I never eat a single meal, a funny woman indeed

When I use a whirring pump to deliver all my feed


So why am I complaining as I look around the room

I see smiling faces not dread or doom and gloom

I think life's what you make it and always keep a smile

It's not a special requirement but important all the while!


Mad Farm!

I walked into a sad looking town this morning. My usual trip to the weekly market was just about as damp as the weather. I knew there wasn't the usual entourage because I got a disabled parking space without squabbling or fighting for the one nearest to the market place itself. Could this be the result of the credit crunch I ask myself?


Well the stalls looked very sparse. The little man who stands in the middle with his materials and cottons, hadn't bothered to turn up, which was rather disappointing for me seeing as he was the main reason for my visit! There stood an empty stall just rattling in the wind. I'd forgotten to mention the wind! It was raw, swirling and howling with fast moving dark clouds -- we were in for a downpour never mind a downturn. I wandered aimlessly then decided to go home before I got a soaking to add to my frozen feet.


There was always the supermarket on the way home. I spend more time there these days than in my house! I think it's boredom or the lack of company I yearn for when all the family are out. Anything has to be better than listening to all the racket outside and the embarrassment I feel when the postman gets his trouser leg pulled by our Jack Russell Terrier. I hear him scream but dare not show my face -- he blames me for the dog's behaviour and the last time I ran out to help, I picked her up and she nearly pulled the tube out of my stomach. Now I'm not about to go into the ins and outs of my condition with a grumpy postie who I think quietly hates me, for the sake of a dog who's lost the plot.


That dog needs re-training or something. Ever since my dad left, the dog's gone barmy! We try our best to calm her down but she's a highly strung pooch and we haven't got the heart to chain her up. The geese are just as bad and they encourage the dog by mimicking her bark! It's utter mayhem out there -- no wonder I enjoy the solace of the supermarket!


I very often hear a distant "H-e-l-p" from someone who really shouldn't be in my field. It's either the goats or the geese that have them cornered, they mean no harm. Any kind of bag, means food to them and the gander is very forthcoming when he thinks there might be a titbit for him. He stands tall, right in your face honking, and the more you back off, the closer he comes!


I've had to rescue quite a few people, and what do I get -- abuse! They refuse to accept that they're in the wrong for being there. I mean you wouldn't wander into someone's garden and pick their fruit would you? I despair at times, and when it comes to someone sawing my trees down for fuel -- Hey! They're my boundaries!

I don't know -- the cheek of it!


The postman's just been. I heard his wheels spinning at the end of my drive. I know it's him because the dog shot past the window with hair stood on end. I heard a bang and then a quick getaway! What a place to live when you have to escape the wrath of a mad farm and a farmer's wife who screams like a banshee down the road.


It's raining, in fact it's hammering down. I got home just in time. The wind is getting stronger and I can hear all the debris next door as the wind howls through my great hole in the wall -- yes! I still have a great hole in my wall. If this wind gets any stronger, I'll have every leaf from every kind of tree inside my home. I'll put some coal on the fire -- at least I'll be warm but let down that my plans for today ended before they began!


Raynaud's Buddies

Why can't we hibernate? Seems to me like a very good idea and I might just do that! Some people just don't get it when it comes to how cold a person like me can feel. Sure I look like an Eskimo when I go out and always commandeer the seat next to the radiator. Everyone in the room looks relaxed, rosy and dressed for the occasion -- I'm blue, frumpy and look like I've been dragged in from the street in sympathy.


I hate the prospect of going out with new friends. I'm not antisocial although it sounds like it! No, I'm just not at my best in cold weather and quite frankly I could be mistaken for the weirdo in the corner!


I shuddered not with cold but dread, at the prospect of going out with my daughter's new beau's parents at the weekend. It was inevitable, our path's had to cross at some stage and it happened to be on Saturday. Of course the venue had to be a restaurant/pub, neither of which appeals to me any more. I realise there is nowhere else suitable -- we could hardly have gone to the movies or 10 pin bowling could we?


So I put on my best thermals, boots, thick jumper, gloves and faux fur jacket for my expedition to the one place I avoid - usually! We met inside. I thought it felt cold so whilst others were removing their attire, mine stayed wrapped around me. Stuart -- thats my daughter's boyfreind, arrived with his parents just as I was cupping a mug of coffee in the middle of a severe Raynaud's attack! We introduced ourselves and his mum pointed to the coffee.


"Oohh I'll have one of those, and are we near a radiator?" she asked before any conversation began. Now she's my type of woman, I thought. We'll get along just fine.


The men conversed about football -- we conversed about the weather, and when the meal arrived, instead of asking why I'd not ordered, she went on to say how much she hated to eat late. I was beginning to really like this person and we had much in common -- how much was about to be revealed.


"Take your coat off, Dawn" Her hubby said, "She's always cold, well she has Raynaud's!"


I spun around so fast and nearly cricked my neck. "You have Rayanud's?" I asked.


"Yes, do you know what it is?"


Know what it is! I'm knowing more than what it is, in fact if it had a chief sufferer I'd be up there with them. I told her that I also had it and the conversation went into hyper- mode. So hugging the radiator and drinking coffee -- I'd found my best buddy.


My daughter may have got herself a boyfriend but I've got myself an understanding friend and I can hear wedding bells, I'm almost buying a new hat! Hope they stay together -- I can see many more nights out!