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CFM Babs from Chorley FM


All That I Am - Part 11

Posted by CFMBabs , 23 October 2007 · 726 views

(cont. from Part 10)

Millennium! There was much said about this particular year. Computers would crash, the world markets would collapse -- the end of civilisation was predicted.
I was fighting yet another chest infection. I'd had two bouts of pneumonia already and I was fast approaching my third. Later that year I was diagnosed as having
scleroderma for real, and I say real because it had never been diagnosed in black and white and it was only ever mentioned in terms of what I might have. This word had haunted me since my mid-thirties. It had been mentioned every time I became sick, and finally I'd had enough.

"If this is sclero wotsit -- do something for me, please?" My general practitioner was brilliant at that time. We lived in a small town in a small terraced house. The house was
never grand but it was comfortable, warm and a little palace. I was a country girl at heart. I'd been raised in the country on a farm and never knew anything about living in a town and having neighbours. My friends back home warned that I would never be a "towny" but I adapted very quickly and I have to say they were the best years of my life. My general practitioner held her practice in the middle of town. She always had time for everyone, but she was very strict about time wasters. When she learned I had scleroderma, she spent her precious time explaining the symptoms as best as she could, even requested leaflets for me to read. She was my rock at that time. I wish those days were back. My current general practitioner couldn't care less but that's another issue!

It was 2001. I was busy with my business. My circulation was terrible, I nearly lost my foot and a few fingers to Raynauds. I was in and out of hospital enduring
horrible infusions that almost exploded my head, at least that's what it felt like! The headaches and hot flashes this treatment caused were almost too bad to bear. Apart from all this, my parents had also had health problems and my uncle who had lived on the farm with them, suddenly died. Suddenly, we had inherited the farm!

My parents had let things slip for years. I was in no fit state to help and wouldn't have had the time anyway. There was a cottage next door to my parents in which my uncle had lived. It was in a very bad state of repair -- practicaly unliveable. We decided to sell our little home in the town and make our move sooner rather than later. It was decided to place a mobile home (trailer) on site whilst we did the renovation. We managed to employ a builder who had experience in old properties, but the house sale went really badly and took too long to complete. We lost his services before they ever began and then ended up stranded in a
housing boom where everyone it seemed, wanted a builder. My hubby had always had an adventurous streak in him, but I'm not quite sure if that's the right term -- daft, I'd say is more appropriate! I must have been mad to agree to do the renovation ourselves. No bulilding experience had we, not even the first idea of building a wall and there we were, ordering mortar, wood and a whole yard of materials.

We began by taking down a very dangerous wall, brick by brick. We cleaned every single one. It was summer 2002. We had piles of neatly stacked bricks and
it actually looked like we knew what we were doing. My hubby began to dig the first footing, a trench 3ft or so deep and 2ft wide. It was about 30ft long and
when I stood in it it came up to my hips almost. He'd bought an industrial-sized cement mixer from auction and mixed tons of cement. He had a wheelbarrow
and spade and every 10 minutes or so he ran with the barrow and tipped it in the the trench. My job was to spread the cement along with a long handled brush,
which I found was the best implement for the job. The wind was strirring up into a real forceful blow. Dust was flying everywhere and it was difficult to see. We'd got just about most of it done when we decided to take a tea break. I had grit in my mouth, dust in my eyes and a raging thirst. We returned to the mobile home for a well earned cup of tea. The kettle was just about to boil when there was a thunderous crash in the yard. My mum and dad were standing at the front of the house when we arrived at the scene and what we saw almost broke my heart. The front stone wall had collapsed, and more worryingly, it had collapsed right where we were working. I'd have been killed for sure.

That tea break certainly saved my life that day -- thank goodness for tea!


All That I Am - Part 10

Posted by CFMBabs , 22 October 2007 · 779 views

(cont. from Part 9)

Just us three! That's how it was always going to be and although our disapointment was hard to swallow, life goes on. We bought ourselves a little touring caravan. We had a large car, big enough to tow our little box up and down the country. My daughter was 5 years old and the look on that childs face when the caravan was cleaned ready for our next trip was a picture. We'd pick her up from school, much to the envy of her friends and head for the English Lake District. It was only a short journey, but we knew a place where they catered for young and old alike. It was a site like no other. It had entertainment for the kids during the day and early evening and then the adults were catered for till the small hours. We never stayed for the late show, so venturing back to our little box early evening and then perhaps going out for a little tour in our car before returning to bed.

My daughter loved Bradley Bear, the 6ft tall children's entertainer who was the saviour of many a bored child. I applauded the guy in the furry suit wondering how he managed to be so energetic in the hot stuffy atmosphere of a club. The place became simply known as "Bradley's" and the mere mention of his name was like all her birthdays had come at once. It was there where we talked about the effects that sclero was having on our family. I'd just learned that it was in fact the cause of my non-fertility and was rather callously told that all things being equal, I shouldn't have had a child at all. Maybe then, I should have spent my time being more proactive with my family instead of wasting everyone's time trying to get pregnant. Of course money was mentioned. I was reminded how much money this type of treatment costs and I somehow felt like I'd cheated the health service out of millions, but how was I to know?

We had many great times in our little holidays until my daughter grew, and grew too big for Bradley and too big for the caravan. She soon longed for holidays further afield and that grew into her love affair with Greece.

I always felt much better in Greece! The warmth of the sun, the food and everything seemed much calmer. I had no aches or pains, my Raynaud's never showed up and I ate much better too. I was beginning to love this place even more than before. I never seemed to have a problem, until I returned home that is. Straight off that plane and walking to the arrival lounge at Manchester Airport, I'd have a Raynaud's attack! By the time I got home, I'd be freezing, aching and back to square one! Typical England -- raining and miserable.

I returned to work with a glut of paperwork and a whole pad of messages. Welcome back to reality and a mountain of new orders and some old ones too! I had irate customers raging on my answerphone: "Where's my job?" And new customers begging for quotes. Head in hands, I wished I was back in Greece!
I had staff, all girls, lining up telling me all the gossip and who said what to whom! And whilst I was catching up, the phone never ceased to ring. First day back -- I hated it and I suppose looking back, I'd have longed to be a stay at home mum at that point. I never thought I would be, never wanted to be, but in the end had no choice. I never expected to end my working life so drastically but who knows what life has in store for them?

My life was about to change -- a nightmare, it has to be said and I wasn't prepared for that!


All That I Am - Part 9

Posted by CFMBabs , 21 October 2007 · 730 views

(cont. from Part 8)

The fertility issue -- a difficult subject to discuss even with the closest of friends. No one likes to admit they are lacking somewhat in that department, especially my hubby. It was the most challenging thing to hit our relationship and if we'd parted at that time it would have been more than understandable. I'd been placed on fertility drugs by my general practitioner. My daughter was 4 years old and although we tried throughout her toddling years to conceive, a little brother or sister were not forthcoming. I paid a visit to my general practitioner who at that time was the best doctor I've ever had the pleasure of confiding in. She put me on oral drugs at first and when they didn't work after 12 months she referred me to the hospital. There were lots of intimate questions, ones that we'd never discussed before and what they asked us to do was something teenagers mock when in a group of friends. Our first appointment, faces red, and fidgetting on a chair in front of a very handsome doctor. He asked me to attend the hospital every day for intravenous drugs and then on the last course my hubby was to come along and do his bit. That first attempt was absolutely embarrasing to say the least. We walked into a room of strangers equally as embarrased as we were, and one by one the male partners were summoned to a room with a little pot and one of those magazines straight off the top shelf of a news stand.

Each lady was called in, I suppose when they'd gathered a sample from their partner. Some were called almost straight away, others like me waited for what seemed like hours. I joked with one of the ladies that they'd probably be better off having the nurse do it! To which all in the room burst out laughing and from that point on --- dignity over. Eventually I was led to a room. In that room were 4 or 5 people in gowns, a long tube and a small pot. I was placed in the most uncompromising position, legs high and apart, shaking like a leaf and dreadfully embarrased by it all. I felt the probe inside and then it was all over. I was wheeled into another room and instructed to lie flat for an hour. My hubby was waiting in another room along with all the other guys and the topic of conversation I believe was who had the biggest pot! The things some men say about their manhood behind closed doors never ceases to amaze me. We had 3 attempts at this procedure and it was always the same result -- negative. There was nothing wrong with either of our plumbing and it just left the doctors scratching their heads after each failed attempt.

We were placed on a new treatment which had been quite successful for some people and they felt sure this would do the trick. By now I was injecting myself with fertility drugs each day, it saved me the trip to hospital and it meant I could still run my business without any time off. The drugs were strong and my mood swings were like having PMT in hypermode. The big day came and I was prepared for theatre for this was a treatment unlike any other in the past. An egg was to be gathered from my ovary whilst I was asleep and mixed with my hubby's sperm. It was then placed back into my tube and hopefully nature would take it's course.
The proceedure went fine until I began to regain conciousness -- I couldn't breathe. Somehow I'd refluxed into my lungs and was choking. The medical staff panicked and I was turned over and bashed around finally ending up on air. I was blue and had a very lucky escape. Needless to say, the fertilisation didn't work either and because I'd given them such a shock during my recovery, they never offered the treatment again. I went back on fertility drugs but when I became ill again with another bout of pneumonia, they pulled the plug. I was 35.

We never had any more kids, just the one, but what a good one she is. I have lots to be thankful for, at least I was allowed one little treasure.


All That I Am - Part 8

Posted by CFMBabs , 21 October 2007 · 754 views

(cont. from Part 7)

Scleroderma, what a strange word for what seems like no ordinary condition, or at least one I should be worried about. It didn't seem to me like a chronic illness, indeed, as it was explained to me, I had in the back of my mind -- hard skin? Well, it was something like that but nothing you could treat with a corn plaster or a tube of moisturising cream! To think that I had an uncurable illness never crossed my mind. I thought it was just a stupid word for a stupid kind of condition.
It's a Greek word my doctor told me. Well, I love Greece so I may as well develop something of that nature. I never took it seriously until it got serious with me.

In spite of having pneumonia and then developing a pleural effusion almost 6 months later, I never connected the two. I went on to develop Asthma and ended up on inhalers. My working life was becoming much more difficult and I ended my long association with my employer with sadness, but with a degree of necessity.
I spent a lonely, boring and useless 12 months at home. With my daughter now at primary school, my days were long and uneventful. I was near breaking point when I took the decision to work for myself and start a business doing the only thing I knew best -- print finishing!

I started in a small room based on a pilot scheme which was funded by local government. I never anticipated any success but it got me out of the house for 7 hours each day and the work began to filter in, albeit slow. This was suppose to be a hobby kind of job not a busy workshop but that's how it went! Soon I was employing several staff and moving premises and the result was a thriving business with little old me at the helm. I was working day and night, had a cellphone permanently stuck to my ear and tax invoices and wage bills spread all over the dinner table at home. I was attending meetings with customers, dealing with the most arrogant of people and running a family home as well. I simply didn't have time to be ill -- It wasn't meant to be this way. I was supposed to be taking things easy and making my life useful instead of moping at home -- so why did scleroderma always get in the way?

I'd be okay for months and then like a bolt from the blue -- I'd become ill. The wintertime was worst. My fingers would cease at the very touch of a cold box and then I'd get the most awful cold that would linger for weeks. My breathing would become laboured, my strength would drain and I'd feel terrible. My stomach was also becoming more of an issue. I was beginning to suffer vicious bouts of heartburn after eating any kind of meal and I swear my employees all thought I had an eating disorder, I spent so much time in the bathroom trying to make myself vomit, that my staff made excuses for me when the phone rang. Truth was I did have an eating disorder but it was more a physical condition than mental. All this to cope with and a business as well was taking toll on my life and that of my family.

I'd had many good times during what became seven long years in business but the end came when I could carry on no longer. I look back many times and laugh at some of the things that happened and cringe at some of the things that made me so annoyed at times. The good times far outweighed the bad and I miss my business so much and then I don't -- it's a swings and roundabout thing. At least I can say I've been there and done it.

I was in my mid thirties and up to now I haven't mentioned the more embarrasing moments of my life. I've mentioned my business and my day-to-day living but not the things we only talk about behind closed doors. I had a secret that no one ever knew about and it involved numerous trips to hospital for myself and my hubby. We had the most gorgeous little girl. She was concieved naturally in 1991, I'm not going to lie and I will say it took time. I did the ovulating monitor thing -- got my hubby leaving work early and going to bed with the watch -- legs high on pillows and resting flat on my back for half an hour after. I have to be embarrasingly honest about this as I believe this subject needs respectful discussion. 19 months later we had our little bundle of joy -- worth the wait and every bit making our life complete. There was just one thing though -- we wanted more kids. This is now the part of my life I began to hate the most.


All That I Am - Part 7

Posted by CFMBabs , 17 October 2007 · 783 views

(cont. from Part 6)

Employment. I was, until 2002, a valued member of the workaholic society. I began my working life at the tender age of 15 and other than taking maternity leave when I was 30, I'd hardly ever missed day of work in those early years. It was later when my problems began. I had many bouts of illness, working through most of them - soldiering on as the saying goes! I can only ever remember two occasions of absence and that was because of salmonella and sinus surgery. I was 24.

Salmonella was the outcome of an unplanned lunch with my friends. I ordered a seafood dish which, looking back, I remember being slightly cold. That night I began with stomach cramps and then vomiting so violently that I couldn't move further than the bathroom door. Like the fool I was, I attended my place of work the following morning only to be sent home before 10 am. I was really quite ill and didn't realise the seriousness of the situation until a few days later when I visited my general practitioner. I was so fortunate not to have landed myself in hospital and to this day I don't know how I kept myself out.

I also suffered with crippling headaches for much of my 20's. Migraine, they said but I always seemed to have a cold. It was diagnosed much later that I had chronic sinusitis and they decided to fix me with sinus surgery. I suppose even back then things were not quite right. The surgery was successful but, as for me, well -- I came round from the anaesthetic and lay almost paralysed for days. A procedure which would normally take just 2 days to recover from and just one day in hospital -- took one whole week in a hospital bed and 3 weeks to recover! The alarm bells should have rung at that point, especially when the nurse noticed that my fingers were blue and all panic broke out around the ward. "I have Raynaud's!" I screamed, but they didn't know what that was, except for one doctor who was fresh from med school. I became centre of attention for the rest of the day, being given a pair of gloves and endless cups of coffee -- what could have been worse!

The defining moment came in my 30's when I finally accepted that this Raynaud's thing was rather more than just a nuisance. The attacks were much lengthier, more debilitating and certainly much worse than ever before. I was 34 and enjoying motherhood to my little girl. I still worked, although it was part time to fit in with my routine. It was January 1, 1995, New Years Day. I'd spent the night, New Years Eve, lying awake suffering from an extremely sore throat. The fireworks outside popped and banged until the small hours and I watched every one of those rockets explode in the sky from my bedroom window. I rose from my bed that morning to a new year and possibly the first turning point of my life. From that day on, I became sicker and sicker. It was Friday, January 13th -- unlucky for some -- well, that was certainly true for me. I'd battled on at home with a flu-like illness that never improved, but got worse each day. The doctor was called and I was instantly admitted to hospital with -- wait for it -- pneumonia! I knew I was ill, but I didn't realise how bad I actually was. It was at that very point I first heard the word Scleroderma. Just like I remember my first Raynaud's attack, there I was lying in a hospital bed learning a new word for my condition! It was a young doctor, again fresh from med school, who noticed my fingers turning blue. He noticed that I'd also been attending clinic for my gastric problems which had begun in pregnancy.

"Do you have scleroderma?" he asked.

"Sclero what?" I replied.

"Scleroderma -- have you never heard of it before now?"

It didn't sound like a serious condition, a bit like being told you have a treatable rash. He mentioned skin and he mentioned hardness, he prodded and poked me and then wrote a whole lot of pages before he left.

My husband came to visit with his usual report of his 50th attempt to make the washing machine work and the the successful creation of dinner cooked on my new stove. I had a list of instructions all penned out ready for him to take home, mainly the programmes for my wahing machine and settings for the oven. I told him a doctor said I had something I couldn't pronounce and after that it was never an issue on any of his visits.

I spent a week in hospital on intravenous drips. The cannulas were always being taken out and resited because my veins were too small. I was sure glad to get home but that strange new word evaded me and for a time was forgotten, after all it was nothing to worry about -- was it?


All That I Am - Part 6

Posted by CFMBabs , 15 October 2007 · 762 views

(cont. from Part 5)

Common complaint -- I don't think so! My friends don't have it and they don't know anyone who has it either. What was that doctor thinking of, telling me it was nothing to worry about? It wasn't him suffering, I'm only 19.

Back then it was considered Barbara's party trick. My friends honestly thought I could turn my fingers white on demand. During the winter months -- I could! But you can only do it so many times before you begin to wonder what was really going on? I was never without a cough or a sniffle and whilst others suffered colds and then recovered, mine seemed to linger for weeks. I wasn't soft, far from it, and I hated to say it but my colds always seemed much worse. My closest friend once said to me, "You're a hypochondriac, I'm sure." And there were times I thought so too.

My 20's were wild to say the least. There I was, newly qualified as a print finisher and loads of dosh in my pocket. I lived and breathed for Friday -- my night out with the girls. Even then something wasn't right, but I was young and didn't care. We'd be in a club, my fingers wrapped around a glass of something intoxicating, when one of the gang would suddenly point to my hand and shout over the music, "Your fingers are at it again!" The music was so loud it's a wonder that I didn't suffer from deafness as well as dead fingers. They looked fluorescent under those lights like one of those luminous skeletons you find in the joke shop.

I wore gloves most of the time in winter and then kept them on through spring and sometimes summer too. I was 22, looked like my gran and felt 62. My friends fell about laughing as I once turned up like Nanook Of The North during a night out one cold December. I remember it well and my friends never let me forget it either. Fact was, the pain in my fingers was getting worse and I now had it in my toes. Whilst they wore skimpy dresses and sling back shoes, I wore jumpers, jeans and boots. "You're such a wimp," they'd say. Perhaps at the time I felt the same but I was sure that I was no wimp.

When I look back there were times when I could have said, "Hey this is not right, why me?" I had plenty of cause to say that, as over the years I suffered such dreadful bouts of illness. Not common at all I'd say.


All That I Am - Part 5

Posted by CFMBabs , 14 October 2007 · 770 views

(cont. from Part 4)

Vanity! What on earth is that all about? Vanity went out with my 20's and never came back. Some say it's marriage that causes it to leave -- I say it's scleroderma. You see my first Raynauds attack happened when I was just 19. It was one of those defining moments you kind of remember with such clarity. There are not many things in life that you recall as being your very first occasion, but I remember that day alright! At 19 you either live for clothes, boyfriends or life itself. What kind of 19 year old should have to worry about how to dress sensibly and by that I mean clothes your gran always said you should wear! That day certainly changed my path in life.

My job as a print finisher was only 3 years into training. There were 8 other girls in the factory and myself and another girl were the youngest. It all began on a Tuesday -- I know that because it was market day and one hour for lunch meant that I could easily wander around the shops and buy things that young people do -- clothes! This day in particular was slightly different. I promised my mum I'd pick up some veg which meant that my bags would be slightly heavier than normal. On my return to work -- nearly always on the last minute I might add -- I dropped my bags on the table and couldn't believe my eyes. Two of my fingers had turned completely white and felt totally numb.

"I'm having a heart attack" I screamed! My friends all gathered round in disbelief as they grabbed my hand and ageed it must be my heart.

"Go home" They said! "Go to the doctor, it's not right -- never seen anything like that before!"

My fingers began to tingle, turn blue and then felt really hot when they eventually turned red. My friends told my boss who insrtucted me to go home, but I didn't! I told my mum when I got home explaining that I'd had a funny turn with my fingers. She thought I was being dramatic and it was nothing, so with that I put it to the back of my mind. It didn't happen again for a long time and it wasn't an issue in my life -- until winter that is! It was a freezing cold day. The heating at work wasn't working too well and all the staff were complaining and putting on extra layers. I was working near some double doors which constantly swung open as paper was delivered. I touched a very cold pile of paper and to my horror --- It was happening again! The same two fingers, dead, white and I could barely move them.

"Oooh you're not right," said one of my friends. "I should get that checked out if I was you!"

I remember some days later going to see my general practitioner and what followed was a classic situation of doctor ignorance. "You have Raynaud's dear!" He swung back on his chair and told me so. "Nothing to worry about -- lot's of people suffer from this. Not life threatening, you'll have to put up with it I'm afraid."

I spent the whole time walking home trying to remember the word Ray something. Was it Rain-hards or Ray-nodes? Or did I hear it wrong? I looked at my fingers -- Whatever it is I ain't seen anyone with this before and my friends certainly didn't have it! Common -- huh? Who is he kidding?


All That I Am - Part 4

Posted by CFMBabs , 10 October 2007 · 773 views

(cont. from Part 3)

Challenges! Well, if there's ever one day without one it would be a miracle. Today, I can't bend nor straighten my finger and whilst some may think that is such a trivial matter, let me tell you that in the grand scheme of things every little fault with my being adds another chapter to this open ended book!

Of course throughout my time of suffering, and I don't want to sound self sympathising here, there have been days when I just wanted to get off the merry-go-round, when days became weeks and weeks became months of going through stages that I really didn't like. The never ending hospital appointments, facing my general practitioner who has more interest in sniffles than anything that can't be cured by the pharmacist!

Yes, it's fair to say that my general practitioner hates me, I'm sure of that. I never worked out the reason for her not liking me and the only shoe that fits in this case is the fact that I cause her more work than she's prepared to do in one day! Take one instance! Her dragonistic stance and a whole sentence that may as well have been fire from her very breath. "I have 4,000 other patients as well as you!" That was in reply to my asking for a referral back to my consultant, Fact is, it's hospital policy that you go through your general practitioner. It wasn't that I was being too hasty. I was losing so much weight, dehydrating and was in excrutiating pain! I was finally admitted and I was. by the time I got there, seriously ill!

With that little episode behind me, I still feel a sense of dread just sitting in the general practitioner's waiting room and when I finally come face to face with her, I can barely look straight into her eyes -- she scares me! So, why not change my doctor then, I hear you say? Well, we live in a rural area, there is only one surgery in the vicinity and that just happens to be her. The rules of the NHS state that there is a 4 mile permitted area in which a general practitioner can work, outside of this you enter another domain. I'm smack bang on the border and with GPs arguing that I'm not theirs, what other choice do I have?

Constipation. A subject so taboo that most people hide away the fact that they suffer with this very painful condition. Truth is, if you've never suffered from this, the very thought of it is one of amusement! Let me tell you there is nothing amusing about constipation. The pain it causes and the misery it can inflict upon a person's day to day living can be unbearable. I've pondered a full day avoiding the trip to the lavatory. I know that once I'm sat there the pain will come and then probably amount to nothing. Without sounding digusting, there is only so much a person can take. My doctor gave me bullets, not the kind to shoot one self with but to insert into a very painful area after a week of trying to rid the you know what! Sometimes it can be as painful as childbirth!

And then there's the other side of the coin -- Diarrhoea. These are times when the old plumbing goes into overdrive. You've done a week of straining and now there's no time to get to the lavatory. If I had to chose between the two, my vote would be the latter, although, in reality, I don't know which is worse. These are problems I hoped I'd never face. In my teens I thought they belonged to old folk. Now I am not old, but still those days are here.


All That I Am - Part 3

Posted by CFMBabs , 09 October 2007 · 747 views

(cont. from Part 2)

Tiredness, well if there was a prize for being constantly fatigued, I'd win hands down! My day only get's going around mid-morning, speeds up a little by afternoon and then grinds to a halt around 7pm, that's when the "Yawns" begin.
To think back 6 years, and that's not a lot of elapsed time, I used to run my own business, employed several people, and kept up with the rest in a very chauvenistic world of high-flying executives. I worked within an industry of tight schedules and demanding deadlines. I took the knocks -- I took the blows -- I'm sure there's a song in there somewhere?

But, yes, I did it my way!

I was a well rounded individual in many ways, weight-wise being just one issue! I loved my food although it stuck in my gullet on most occasions and ruined the best nights out I've ever had. Still, my love for curry never stopped me indulging in a feast of different courses until my esophagus filled up to the top and I couldn't physically squeeze any more in. I'd spend the rest of the evening afterwards holding my breath as the food moved backwards and forwards in my throat. Eventually though, I began to eat less because of it, and then gradually things became a whole lot worse. The decision to do something about it became the biggest turning point in my life and began a journey that I'm still travelling on today!

I guess it was 2002, it must have been something like that. I remember moving to the farm into a 2 bedroom trailer. We'd set our sights on rebuilding the farmhouse cottage within a year. We'd had several pitfalls along the way. We lost our builder for a start as he went off on another job, didn't bother to tell us and then never came back and that was before we took down a wall or laid a brick! The months rolled on and we slid into winter. Of course we weren't prepared for snow and ice and all that a cold winter had to throw at us. It's absolutely no fun having a condition that reacts to the cold when you are living in a tin can.

Spring came along and we were still looking at the house and watching pieces of it deteriorate in the March winds. Finally we made a decision -- the most stupid one to date. We would rebuild the house ourselves! I mean, why not? My hubby was an engineer, I was creative and rather than doing nothing but stare at an empty shell, we might as well have a go at it. So, then I became Barbara the Mum, housewife, business woman, scleroderma sufferer and builder. I was "Jack of All Trades" but, as the saying goes, "Master of None!"

We had many misfortunes along the way. I became very sick after spending long spells in hospital. The building work suffered -- the family suffered, my life was becoming very different indeed.


All That I Am - Part 2

Posted by CFMBabs , 05 October 2007 · 740 views

(cont. from Part 1)

So, around town I go with my rucksack bobbing about on my back and it's about this stage of the game that I begin to feel like I'm carrying a lead weight around with me. My shoulders, neck and back ache, and if that wasn't enough, my fingers begin to go into spasm. Now, if you're not familiar with the condition Raynaud's, you won't appreciate that having dead fingers and toes that turn completely white, is no happy vacation! So whilst I'm cursing the pack on my back, I'm also swearing at my digits to come back to life and be of some use. Coins are the worst, I tend to hand over paper notes and end up with a purse full of silver and brass to add to all the other weight I'm carrying. At this point I feel like the proverbial donkey laden with goods that are neither use nor ornament!

My favourite stall -- Chocolate and sweets. I know, I know, chocolate is bad for you! but it's just okay for me, for whilst I can't eat much, I can pop a square of delicious milky chocolate on my tongue and suck it till it melts. Of course 10 minutes later I'm regurgitating the stuff and at the risk of sounding disgusting here, I'll move on!

Gloves -- what use are they? No matter how thick they are, my fingers still have their moment of glory! And with that it's time to go home. It's no fun having scleroderma either. It's this I hold responsible for my swallowing problems and so many other changes to my life. Oh, I'm not complaining -- far from it, because in the grand scheme of things I don't have it too bad -- limited they say, and I do agree that it is in fact, limited! It certainly limits me in more ways than one. I used to be so active -- had my own business, even attempted building our own home, but all that's gone now and all in a couple of years. Yes, I guess you could say my life has changed but have I changed with it? Well, you'd have to ask my family about that. I don't think I have, but they may have other views.

Back home and I slump in the chair. The fire I made this morning needs more coal so I put on a few cobs, a log and also the kettle for a nice cup of coffee. TV -- should I turn it on or leave it switched off? I can't decide because so much of it is rubbish. It's either home makeovers, chat shows where people air all their dirty washing live on TV -- by that I mean all the scandal that goes on in the world, are there really such sad people out there who want a studio audience to sort out their life? I'm thoroughly amazed that someone would have an affair and choose to tell hubby live on TV with the guy she's having an affair with sat right beside him, and then it turns out he's a she really -- Oh, how complicated can life get, but then it does make life sound so simple by comparison. I could watch the news but it's always the same: political wrangling, global warming and a nice little jolly story to end the report.

My feed is almost half way through. The clock says it's time for me to work out plans for evening dinner for the family who will be starving to the point of malnutrition by the time they arrive home. If they really thought about it -- how do they think I feel having to make a meal I can't eat? Oh, I'm over that stage now. I can quite happily make a meal without drooling and it's a kind of routine rather than torture. I can tell you there were times though when I thought the world was against me and sympathy was nowhere to be found at home. People I meet ask, "How can you make a meal and not want to eat it?" The answer is, "I don't know!" I guess that's one obstacle I've overcome and the ultimate proof lies with the fact that I present a cookery show on the radio. That may sound hypocritical, but I actually enjoy cooking, always have, and I don't see why something I like doing should change! And to make things worse, the presenters at the station don't know my about my personal circumstances -- I don't want to be treated any differently. I wonder, though, about the day they discover the truth (and it's bound to happen) that their "Dish of the Day" presenter can't eat anything she makes. That doesn't sound good does it? There I am reading out the recipe and putting heart and soul into my show complete with " Mmmm" and "Gorgeous" as if I were devouring the dish on air -- if the listeners only knew!

Mornings can be a trial though. Some days I get up with an overwhelming feeling of nausea and then I inevitably vomit. There's nothing in my stomach and the wretching is the worst feeling in the world according to me. The scars I have across my stomach, bearing witness to the many procedures I had two years ago, still hurt and I don't think the muscles have ever healed. That's the pits, and these mornings are the worst I ever feel. Such days as these are slow from start to finish and the only time I truly hate my condition.

Hospitals! Where would we be without them? Well for a start I wouldn't be sat here giving my account of the day. So why do I hate them so much? The mere mention of the word causes collywobbles and a sense of dread. The appointment letter arrives and without boasting telepathy I know that it will say -- six months. Chances are I'll have mislaid the letter by then and won't have a hope of knowing what day or time I should be there. Out come all the drawers. This is my attempt of a filing system and usually I've either missed putting the letter in there or it's right at the bottom and I've missed the ###### appointment by two days. My need for a diary is paramount and I never think of buying one and if I did I would probably forget to fill it in. My apologies to the hospital, eating humble pie won't wear with the secretary and she makes another appointment for 2 months time. That's eight months from my last consultation!

My last appointment was long and in the end pointless. Five hours, a whole day, sat in a waiting room and then a 10 minute consultation with my Rheumatologist who ordered more tests in the name of medical science. Is this what my life has come to? A human laboratory mouse! Six months -- now eight -- for a brief chat and a whole lot of poking.

Socialising! Now there's a thing! My clothes are now 4 sizes smaller than they used to be and the figure I longed for as a frumpy 20 year old has arrived in a cruel twist of fate. I could have enjoyed it more in my 20s Oh, the thought of what I could have done with a figure like this and what I could have worn. Still, I'm having a late menopausal fling and all the clothes I looked at on plastic models -- I can now wear!

There's a downside though like so much of my existence. It's no secret that I liked a little alcohol -- a social drinker you might say! Now I'm stuck with a cup of coffee if the pub will make me one. Other than that it's soft drinks and I have to be careful with them, too. Orange or any citrus juice will give me heartburn so it leaves little choice. Of course my hubby gets a personal chauffeur to take him home after a night out as I'm stone cold sober. Thankfully, this only happens once a year -- how can I complain? And if you think it's no fun for me, think again! I can hold an audience without false courage -- thankfully I've lost none of that.

Disability badge! This is one small piece of card that has made such a difference to my life. Parking can be a nightmare around town and when the weather's cold it's a relief to find a parking space in front of my destination. It's also frowned upon as well. I've had an egotistic elderly gent approach me with an attitude so Victorian: "I hope that badge is yours." I rather wished it wasn't because that would mean I was normal. He was, of course, referring to my parking next to him in a better spot, I should imagine. I retorted with lifting up my jacket and flashing my tube. In the world in which we live I could probably have been arrested for indecent exposure but my message got across loud and clear and this man hung his head and apologised. That was the one occasion I shook with temper but I kept my cool and went about my business as intended.

In reality, my life is not so bad. There's so much devastation and hunger in the world and people far worse off than myself. I've kind of been there and done that! My family are okay, my daughter healthy and a hubby that cares enough about me for him to stick around even through all that I've been through! I didn't mention the pain -- perhaps it's better not to. At the risk of complaining and being a bore, I purposely left that part of my day out. I do have pain and it wouldn't be a true account without a mention. So there, I've mentioned it! And that's all I'm going to say!

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