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CFM Babs from Chorley FM


Gettin On With Life!

Posted by CFMBabs , 11 February 2008 · 764 views

'Getting on with life' is a term I use loosely for the way I feel on a day to day basis, however there are days which bring me back to earth with a bang! I like to pretend that I am, after all, a normal human being. I look no different facially, a fortunate case I'm told. I act no differently with my friends and behave in much the same way as I've always done for the last 30 years or so. So when these 'off' days come it's a shock even to me.

Just when you're least expecting it, that little reminder raises its ugly head! I hate those days and all they have in store. I woke on Friday and almost instantly knew that I was in for a dose of sclero sickness. I was nauseous, felt yuck! and constipated. I was weak, felt heavy and generally felt like I had a disease worthy of its name. For most of that day I was sluggish, heaved whenever I wandered around, had this awful stomach ache and couldn't describe to anyone how low I felt.

If you've ever been constipated or had bouts of heaving when nothing comes up but very nasty tasting bile, then you'll know what I'm talking about. As for the constipation, well it's no joke! I know it's the subject of many a bad taste jest and I for one have laughed, but I sure ain't laughing when it happens to me! The pain that it causes and the elation of actually relieving yourself is incredible. I've heard it likened to having a baby, well I wouldn't go that far but I think it comes pretty close. You can't think straight, relax, or do anything constructive when you know you gotta go, but can't!

Anyway it wasn't all about constipation. I was sore from constantly heaving and totally washed out. My fingers ached -- don't know why but they had to give a show as well, my head pounded and I genuinely felt like I had the world on my shoulders and I felt like I was stuck "Up The Swanee Without A Paddle."

In truth I've done very little since Friday and today I finally went to the you know what?-- Yippee! I was alone in the house, daughter at college, hubby at work and I gave it my best shot! So without going into detail I think you know the rest. I still feel like the proverbial rotten tomato, but at least I'm probably 2lb lighter and I certainly feel that way. Not that I can afford to lose any more weight ( my dietician would be doing back flips if she knew I'd lost 7lbs since Dec). Goodness knows if I lose anymore I'll be a size zero -- I'm 47kilos which is about 105lbs and now I probably 103lbs not bad when you think that I was once 144lbs. It's so hard for me to convert weight into pounds so I apologise if I'm all out of proportion. In the UK we measure by stones or kilos, another Euro meddle.

Today I'm going to raise my game and attempt to clean the home. I'll see how far I get before I begin to heave again. It won't take long I'm sure, but I guess you know about that as well.


Despair With Doctors

Posted by CFMBabs , 04 February 2008 · 798 views

Much is said about doctors, be it good or bad. Fact is they are only human, with some exceptions of course! I've come across so many of them in my time, every age, nationality and gender. I therefore feel I've earned the right to applaud or critcise doctors, since my dealings with them have been many. The good ones always made me feel better, the bad ones always worse. I have, thankfully met more good than bad but the fact remains that there are bad ones out there and I fear those I've yet to meet.

My rheumatologist is wonderful, my GI surgeon is my rock, dieticians and nurses all feature on my list of good, but the one I need the most, and especially to be on my side is my general practitioner and she leaves something to be desired. I'm not a regular face at the surgery, fact is I'd rather suffer than face my general practitioner. She's cold and very abrupt, knows nothing about sclero and has made it clear that she intends not to read into the subject. If I was a doctor, I'd want to learn about everything my patients had and would'nt that make me a better doctor, knowing about something that everyone else knows very little about!

She criticises me and challenges me, always asking what I want? The last time I went, I was asked why I went to see her with a cold? If that was true then I'd have agreed it was a feeble ailment, but when it turned out to be a chest infection and I really did'nt feel that great, she gave me antibiotics which I couldn't swallow and I had to go back and see her miserable face greet me with contempt like I could have prescribed them myself!

I've had pneumonia 3 times previously, so I don't take having a heavy cold lightly. My last general practitioner was wonderful to say the least. We lived in Town then. She was lovely to talk to, always had time for you and always very thorough. I honestly believe if not for her I might not be here now. She knew about sclero, knew what I was in for! And when I asked a question she couldn't answer -- the phone would ring at home some hours later with an explanation. When I first had pneumonia, she was just incredible and cared for me at home after a long spell in hospital. After that she told me that if ever I had just a sniffle, to come to the surgery for a check up. She found me the best rheumatologist she could, and was always interested in my condition, "learning all the time" she once said. Correct me if I'm wrong but she's one **** of a good doctor!

Things have changed so much since then. My new general practitioner seems to care more about money, NHS targets and saving budgets. It seems to me that patient healthcare is secondary and in my book that's wrong. It's not like a general practitioner should be, more a manager, and if your face doesn't fit -- you're out!

I may be a drain on her resources and that's not how I want to be. I want to be treated normally but I expect a little understanding. Who else can I turn to if not my doctor? It's true you are alone with this disease but does she have to make it so obvious!



Posted by CFMBabs , 04 February 2008 · 735 views

Support Groups, I never thought that I would ever in my life need one. I'm not the sort to confide in people or share my misfortune in a way that would attract sympathy or pity. In short what on earth am I doing relenting on my past tense?

I guess coming to terms with a chronic illness sets you apart from the norm, like I never thought I would marry,have a baby, grow old, least not get to 40! But here I am having done all 4 and past the 40 mark as well. I guess we all have our milestones and looking back, I can't say that my life has been all bad!

Sure scleroderma has its place, as much as I hate to admit it. And Raynaud's drives me to the point of exasperation at times. Sometimes I hate what I've become but I never regret anything -- why should I? Because, on the whole, I've been there and done that.

My life is never boring. Much of that is because I won't allow myself to wallow in self pity. I try and carry on just as any normal 40 something would do, I just alter my style a little.

To realise I'm not alone took just one step. I nervously rang a number in my quarterly newsletter from The Raynaud's and Scleroderma Association here in the UK. That was 5 years ago! I spoke to a lady who ran a local support group and also attended the same hospital as I did. We spoke for a short while and realised at that point that we had much more in common than Raynaud's and Scleroderma put together.

I cautiously attended the next meeting, this was my first contact (and I have to say I was nervous) with a group of people who were all in the same boat as me. But y'know what? We all got on like a house on fire and it's been that way ever since. We have fundraising evenings, meet every month and, dare I say, have such fun! And there's hardly a mention of illness, it's just like a girls' night out.

I'm off to my meeting tonight. I wonder what will be on the agenda? No matter, we'll all be in stitches by 9pm, we sure do make a rumpus. I'm the quiet one y'know? And If you believe that then you'll believe the moon is made of cheese!


Self Inflicted Pain

Posted by CFMBabs , 03 February 2008 · 736 views

I'm glad our football team won yesterday, it was a great treat for my daughter's 17th birthday. She received, amongst other things, a signed football from the team and a special treat from us -- a meal at the stadium.

It was bitterly cold, the wind was cutting and although I had two pairs of socks and a pair of furry boots on my feet, the cold still got through! My hands were dead for most of the match and my knees wouldn't work when I got up from my seat, so why did I do it? I guess that question is asked each time we do something we know we shouldn't. To put yourself through such pain when it could have been avoided is ludicrous -- don't you think? But through the pain I actually enjoyed the day, I must be sick!

It's Sunday the TV is rubbish, the weather too. I've just took out a huge ham from the freezer (my fingers are dead again) and I'm thinking about all the other things I need to do today. I have an ingrowing toe nail that's hurting real bad on account of my self taught chiropody skills. Fact is, I'm supposed to have a chiropodist and attend a clinic, but my wonderful general practitioner has stopped all of that and the fee they charge is just ridiculous. Of course it's a small price to pay when you challenge your health, but it's my personal stubborness not to pay for anything I am entltled to receive for free!

My old general practitioner was wonderful. Okay, she didn't know very much about my condition, but she helped me with anything I needed, researched how she could help me further and refrerred me to the best rheumatologist she could find. This one, on the other hand, is entirely the opposite and is concerned with saving her budget -- I'm just a drain on her resources, at least that's how I see it!

I see the chat this evening is again about Keeping a Good Relationship with your Doctor, so I take it I'm not alone in my feelings towards my doctor? I guess this problem is worldwide!


Let's Eat Pancakes!

Posted by CFMBabs , 01 February 2008 · 745 views

This year I'm tossing pancakes for the old folk, residents of the local elderly care home after featuring them on my Thursday radio cooking spot.

We have lots of silly little customs, but these little holiday festivals always remind me that winter is slipping away and spring is just around the corner. I yearn for spring, even more for summer, and if you have Raynauds you will know why!

Last night was particulary rough. High winds, and a snow forecast drag me back to reality -- is winter going out like a lion or coming in for the last stand. My gran had a saying. March comes in like a lion and goes out like a lamb! But this is February.

My fire is burning fuel at the rate of knots, it has to; keeping the house warm is almost like keeping an old draughty barn ambient. Although it's cozy for the family to sit around the fire in the evenings, it's absolutely no joke trying to keep warm.
My daughter's birthday is tomorrow -- Groundhog Day, in the US, I believe, and something to do with the end of winter -- Please correct me if I'm wrong! If he lived over here, he'd never come out at all, well if he had any sense!

She's out with her friends this evening marking her 17th birthday in style. It's just 1pm and she's already strutting around and the smell of perfume fills the house from top to bottom. Tomorrow we've booked a special treat -- an executive room at the football (soccer) stadium. She'll watch the match, meet the players, hopefully we'll win! And be treated to dinner with entertainment before returning home.

The weather forecast is very cold -- perhaps snow, but any way it's not going to be a very nice day. I'll be staying indoors at the stadium, watching 22 players in shorts chasing a ball is not worth catching pneumonia for!

This wind is unrelenting -- there goes another chicken and there goes another piece of something, hopefully not from my roof! Help us this evening if the wind keeps up, we'll have nothing left by tomorrow!


Good Old Days

Posted by CFMBabs , 30 January 2008 · 729 views

I'm at inner peace with my condition! By that I mean I have total acceptance of the way I am. I never went through denial, in fact I was more relieved to discover that the symptoms I'd been having were, in fact, not in my head but had a fancy name to boot, even Greek by origin!

That was 8 years ago when I thought I was going out of my mind! The word Hypochondria raised its ugly head on more occasions than I'd like to admit. Even my own family thought I was looking for attention or sympathy and that hurt the most.

Moving on -- I hate to dwell on the past. I have my humour to be grateful for and see the lighter side of life wherever possible. I've never been a serious person, and believe me it's got me into trouble over the years! Yes, I've always been the clown, so I guess my family was right in one way -- I did warrant attention.

I can't be serious, and as I said before, it has got me into trouble in the past. My husband's friend, a work colleague, once told me that he tested lightning conductors for a living. This started up visions of a guy 30ft up a pole, embracing it for dear life in the middle of an electrical storm, hair stuck up on end, charred clothing, blackened face and shouting, "This one's okay mate." I even remarked that he probably didn't do much overtime or work on sunny days. I could imagine the phone ringing -- "There's a storm on the way, get out there." Of course he didn't find it remotely funny and went on to explain the correct procedure for testing lightning conductors. Some hours later I was wondering why I had the will to live, he was such a bore.

I remember one occasion in the seventies when I almost got sacked from my place of employment -- this was just one occasion, there were many more!
We had a boss, the type you put your head odwn without raising it until he'd passed by. He was the original stereotype boss who made you quake in your boots with mere mention of his name.

It was late Autumn and a lean period. Work was very scarce and there were 12 girls all seated in a room waiting for work to do. We were'nt allowed to talk and had to behave impeccably. We had a drinks dispenser in which you got the most awful coffee in a plastic cup -- we drank plenty of them of course, and the waste bins were always full of used cups. We were a finishing department, all of us bookbinders, and ait was a pandora's box of scrap paper, clips, string, in fact all the things a good school cupboard would long for.

I scribbled on a piece of paper -- doodling. Everyone else just whispered conversation, and the only place you could talk freely was upstairs in the ladies toilets, but if you got caught, there was the wrath of David (David was our boss).
We used to disappear for a short while but dared only to spend 10 minutes at the risk of being caught. I pondered for a while and then began to put together a plan that could enable us to spend as much time in the toilets, chatting and then be alerted without his knowledge the minute he entered the department.

I learned at Brownies when I was 7 how to make telephones from paper cups and string. I put my plan in action and made a set of phones -- this was before cell phones and in the 70s. They worked a treat -- pull twice on the string and answer, "David's coming." Out the girls woud come just in time for his entrance. He must have been pretty impressed by his very well behaved bunch of girls because he even said. "I've never seen you so quiet and disciplined." It wasn't long however before we got caught. He crept in one day and caught me on the plastic phone. He grabbed the cup and hollered down the line. "You lot out of there!" he fumed.

The girls came out of the toilets head down, trying not to snigger, but everyone else thought it so funny that the place erupted just like David's face and he marched out and then returned with written warnings for us all. I wonder how he would cope today with cell phone technology. I think on the whole he quite liked us and I'm sure that some of the antics we got up to made him smile behind closed doors, if not, then he must have been the very sad person we all thought he was.

I miss those days and we still laugh about them whenever we meet. We've all taken different paths in life but the very best days were back then and nothing has ever come close.

I have hundreds of stories like that and I'd like to share them with you -- if you'll allow me.


Yesterday's Appointment

Posted by CFMBabs , 28 January 2008 · 726 views

As far as appointments go I suppose yesterday was a bit mediocre. I travelled 30 miles there and the same back with a stiff neck, sore back and little patience with congestion at every road exit. No wonder I returned home feeling like I'd wasted a complete day with nothing to show!

The highlight of the day had to be meeting my friend in clinic otherwise I may have fallen asleep with boredom. And coupled with the fact that two people were called at once and fought for the weighing chair had me thinking there was after all so much more to life than squabbling over a chair. I therefore graciously showed the lady to her seat and happily sat back in the waiting area. I was competely cool about the whole thing, after all it was such a piddling thing to worry about but the whole issue blew right up in my face when the nurse treating me and had clearly had enough of the day, leapt to my defence and demanded I sat in the chair first.
I don't mind being made a fuss of, in the right frame of course but if I was ever to be put forward before my time for something more serious, I'd feel much obliged, but please! a couple of minutes more wouldn't have mattered and I was prepared to wait.

My excitement of being shown to my chair I could hardly contain and something I wasn't in the slightest worried about, turned into a fiasco and at that very point I wanted to go home! I've lost 7 pounds in weight since the holidays. Okay not a problem if I was normal, in fact several years ago I'd have leapt with joy in losing a few pounds and considered it a triumph. These days, however it's not so good news when all I have to replace lost weight is a liquid food that obviously isn't nourishing me properly.

Feeling the need to make excuses I tried to blame it on my daughter's present bought at the holidays. Y'know the kind of game that goes on TV and you play with a remote. I was playing tennis and I can boast that I'm not only good but professional! Much to the annoyance of my daughter, I can beat her score no problem and that infuriates her. Then I kind of remembered my stiff neck and sore back -- Mmmm, and realised the cause.

There was much said about my weight loss and I was beginning to tire of being told the obvious -- "Keep your feeds regular." Okay! so I missed the odd few, so what? Would they like to carry a heavy container on their back 24/7. Anyway with my solemn promise to be a very good girl, I left and headed for home with nothing more than a ticking off and a lost afternoon.

My mission today is to go to my local market. I always go on Tuesdays. I like to support local business and I love bargains. The weather so far seems fine, at least the birds are twittering outside -- if they think it's spring then who am I to argue. This weather is wierd! It's never stopped raining for weeks and now its almost 50 degrees outside. My daffodils are up and about to flower and the trees all have little buds on them. It's almost February but it feels like April, which reminds me that my daughter will be 17 in a few days. We need a mortgage or a huge bank loan to pay for this birthday. I'm dreading next year when she will be 18.

I hear her prancing around the bedroom. It's 7.30 in the morning, better get a move on or I might miss the chance of a coffee.


Money, Life And A Built House

Posted by CFMBabs , 27 January 2008 · 744 views

Waking to the sound of a cockerel's crow may sound idyllic for some, indeed it was a very 'country thing' at first and it put a wry smile on my face as the young rooster tried his new found call: rock-a-doodle -- eeek as apposed to doooo! Now it's well and truly found its cry and personally I feel like chucking my boot at it.

My daughter is at an age where clothes, boyfreinds and personal appearance are the only thing that matters. It's not considered the in thing to be countryfied with an Hooray Henry! attitude and indeed she hasn't been. The farm life certainly doesn't do anything for her street cred.

The poor kid avoids bringing her friends home on account of mountains of goose poo through the yard which sticks rather well to high heels and doesn't provide anything but a slippery surface. It doesn't help that once indoors, the house is half-finished and her mother walks around permanently with a rucksack and tube like she's about to conquer Everest. It definately doesn't feature in a teenagers agenda.

On the whole I feel mighty sorry for her, she's had much to put up with in her young life. It certainly can't be easy and these are things you tend to forget when you have a chronic illness -- the impact is has on family!

The cockerel has finally shut up! Now it's the geese who have their turn. My daughter has gone off to college in a huff and my hubby has just turned the house upside down looking for the bank card which was in his jacket pocket all along. Of course I got the blame, I always do like I had it last. You'd think that I was the sole beneficiary of our bank account and that he never spent any money. He'd love that, of course, but where on earth does he think the food comes from? True I am a good cook, I can say that because I even have a cookery radio show, but I don't go out and hunt or collect flora or mushrooms, so the stuff almost invariably comes from the supermarket and until they begin giving it for free --- I have to pay like everyone else.

The money goes so fast these days. I no longer work for a living. Goodness knows how much I miss my contribution to the family pot! Things are much more expensive now, fuel and the rising cost of living are all linked somehow. Much emphasis is being placed on the farming community -- perhaps not at the moment but I can see great change afoot. The ever increasing pressure on the global warming issue is forcing many to think about bio fuels and that loosly means growing crops for fuel. I think it's a good and bad thing and without going into depth, I think there will be much said about the subject in years to come.

In relation to my daughter, her head is in the clouds. I can't see her in rubber boots driving a tractor or being remotely interested in growing anything but her fingernails. Her idea of learning to drive is cruising around the countryside in a sports car rather than bouncing around a field on a tractor.

So today finds me travelling to the hospital in Manchester. I hate that journey!
It was posponed by myself last week because my house was flooded. I rang to cancel and they replied with an answer I could hardly believe. "It's not a good enough excuse." Now I ask you -- If that's not a good reason for missing an appointment -- what is? Does my entire house have to collapse? Does my house have to be washed away? Not a good excuse -- really!

Better get myself ready then. I'm not in the mood for hospitals but then again am I ever! I'll get it over with and then I'll go and spend some money -- as if!


Personal Triumph

Posted by CFMBabs , 26 January 2008 · 758 views

I don't have many personal triumphs these days, in fact my days without any kind of trauma are few. Above all else, I have a family to be thankful for, a wonderful daughter to boast about, a lovely country life albeit pandemonium at times and a husband who is at least loyal if not totally understanding.

My personal triumph is a feather in my cap as they say. I fought the sytem and won! I battled for justice against a very flawed system, changed the law and got recompence for my father. Yes! I feel I have the right to boast because it makes me realise that I'm not altogether useless after all and I have my place in society.

You lose so much self esteem with scleroderma because if you thought you were the only person close by with it -- you'd probably be right! And if you ever thought, "Why me?" then you would have just cause to feel that way.

I guess the moral of the story is that you should fight for what you believe is right and not accept anything less. Having a chronic illness can give you self doubt or cause you to feel as though you are becoming out of touch with normality. You leave work, adjust, battle every little hiccup, and at the same time try to lead a normal, happy life, I think that actually we are quite marvellous!

I won't lie down just yet and there is much to be done in our society. If I can't right my own problems then at least give me the satisfaction of success in others!


Rain, Rain Go Away!

Posted by CFMBabs , 21 January 2008 · 742 views

Today was my rheumatologist appointment. I say was, because I'm not going! I can't believe how bad the weather has been, not just recently but for over 12 months. It's hardly ever stopped raining and in the last 48hrs it's dropped over a months worth of rainfall. My unfinished house is flooded way above shoe level and I'm walking around in rubber boots.

I took my daughter to college this morning and I should have had a boat. The roads are all flooded, driving conditions are atrocious and it's so dark -- there's no let up! The clinic is in Manchester, noted for it's rainfall and it's some 30 miles from my home, small wonder why I'm not going.

The purpose of the appointment was to be new drugs --- vasodilators for my Raynaud's. I can't take pills on account of my swallowing motility problems, so they're trying new soluble tablets -- why I have to travel so far to learn how to dissolve a tablet who knows? It's not tablets I need right now it's flippers and a snorkel. Anyone got a raft they can lend me?

My geese are loving it but the cat is not impressed. I watched it walk across the yard this morning on it's claws without getting it's paws wet. Then I laughed as it leaped across one plank of wood and missed the other -- splash straight in a huge, and I mean huge puddle. It was like a wet rat -- if I'd got it on camera it would have won a competion for sure. Have you ever witnessed a wet cat, have you ever seen the look on it's face? Boy!

The dog is slightly more aware but daft enough to go and get soaked. It stands there in the rain looking indoors, but it ain't coming in -- the smell would be totally off putting. There's plenty of shelter outdoors, the chickens know it but the dog would rather get wet.

Back to the forecast and it's not good. We are due to have snow later and then a big freeze overnight --- fun and games tomorrow then. I'll need skates or skis in the morning. What's happening to our weather?

I don't believe it, it's finally stopped... but wait, there's a huge black cloud on the horizon. I'll get fuel for the fire without getting soaked me thinks! Better do it now!
Rain, Rain go away. Come again another day!

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