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CFM Babs from Chorley FM



Posted by CFMBabs , 07 October 2006 · 868 views

You have Raynauds, said my doctor. I must have been nineteen
A very common condition, many people with that I've seen
It's nothing for you to worry about, it may even go away
And with that diagnosis, I was sent on my way
My friends thought I was amazing I could make my fingers white
And they almost looked illuminous when we went out at night
I laughed with all the others but really deep inside
The pain was just unbearable and that I had to hide
First it started with two fingers then three, and then all four
Then it moved to my other hand and began to effect some more
I couldn't do my job, couldn't open doors with handles
My fingers dead as door nails and they looked like little white candles

The years went by so quickly and they kept getting worse
I hated having blood tests and going to the nurse
You see I had a problem and I didn't know what to do
My fingers they were bending and always turning blue
I started getting ailments, every day was something new
I even had pneumonia and eating problems too
I knew that things could not be right, by then I was 39
I never had a single day that I could say "I'm fine"

Finally, someone who cared and made me feel at ease
A young doctor had an interest in a very rare disease
I think you have scleroderma and that's why you feel so ill
I'd never heard of such a word, but I listened to him still
I'll refer you to a specialist and he will take a test
And now they say is history and my mind is at rest
I do have scleroderma and that ###### Raynauds too
And I'm so glad that I met him and the condition he knew
For years I spent in the wilderness, all the times it drove me mad
I walked around with a condition, one I never knew I had

My life has changed oh yes indeed, but not always for the worse
I still have my life to live with or without this curse
I take each day as it comes. look forward to the next
And see that scleroderma is nothing but written text
For life is how you make it and it's very plain to see
That maybe I have sclero, but sclero ain't got me
I'll fight every little problem and put it down to rest
And do the things I really like, things that suit me best
So if you're scared and all alone, remember I was there
I felt the world against me with friends who didn't care
But now that's all behind me and I don't give a toss
If you don't like me when I'm ill, your friendship is no loss


Great Feeling -- Not For Long

Posted by CFMBabs , 07 October 2006 · 887 views

Hey! We all get bad days with scleroderma; in fact more bad than good. When I feel good, I just have to share.
This morning, the sun was shining, I felt reasonably okay and I was going shopping to my local market. So gloves on, jacket, scarf and boots, I set off in my new car, yes new car! The heater was on full blast and the radio was competing to make me deaf.... What!, DEAF I said. OKAY SO I WAS DRIVING oops, sorry for shouting over the music, yes driving into town. I had a real good feelgood factor about me. I stopped at the traffic lights and turned the radio even higher, Katrina and the Waves, 'Walking on sunshine' was playing, now that's a feel good song if ever there was one! So I'm there singing away, tapping the steering wheel " Yeah, I'm w a l k I n g o n S u n s h I n e, w h o o a a --- a n d d o n I t F e e l g o o d
Yeah, yeah. Then I glanced to the side of me. A car full of kids and a totaly gobsmacked mum were all staring at me. I stopped in mid chorus and in a moment of pure silliness, stuck out my tongue -- there, that'll stop you from staring I thought. The lights changed and I stuck my foot right down and off I shot. he, he! I'm just so great today.
Moment of madness over, I swung my car into a wonderful wide spot in town, grabbed my rucksack with my feeding pump in it, coiled up the feeding tube and stuffed it in my pants. Boy I was ready for anything! Round the market I went from one stall to the other. The stall holders were all shouting " Who'll buy a box of apples or pears for £2.00, C'mon English apples and pears" The next stall was selling bed linen, the next boxes of cakes, chocolates and sweets, mmmm my favourite stall of all.
The sun was still shining. I felt so great, so alive if I could sell this feeling, I'd make a fortune. I spent two solid hours just walking around with a stupid smile on an equally stupid face. I felt so high, I just never want to come down.
I stood at a stall in wonderment at all the lovely things I could buy if I had a home but my home's not finished, I reminded myself. All the things I could wear but my feeding tube would show, all the things I could eat but I can't, oh man! I was coming down so fast I felt like a bursted balloon. My feeding pump began to bleep, I'd kinked my tube. " What's that" someone said, and then everyone started fumbling in their bags thinking it was a mobile phone. My bubble burst! I hate this disease, I snapped at myself, I hate being myself, I hate everything about myself. I'm going home!
I left the stall feeling like a hound dog in trouble. My head low and dragging my feet. I got into my car, turned on the ignition and Wham! the radio blasted at my ear drums. I banged the switch to off, sorted myself out and went home.
I came home to a mountain of bills, untidy beds and goose poo on my foot.
I sat down in my tin can ( Trailer ) and was willing myself out of this mood.
It's 12 .00 lunchtime, hubby will be coming home soon, and what have I done today! Nothing.
Such is life with a chronic illness. One minute up, the next you're down. Won't stay like this for long, you watch. Tonight I'll be swinging from the lightbulb and life goes on.
There's always tomorrow!


Wedding Crashers

Posted by CFMBabs , 07 October 2006 · 832 views

This is one of my favourite true stories; one which I tell over and over again, mainly because it breaks the ice in company and it's a pleasure, if not embarrassment for me to tell it.

It must be ten years ago since this happened--my, how time flies. I know my daughter was just a mere 5 year old. I was working like crazy running my own successful print finishing business, and my hubby working just as hard in his line of work.
We recieved a phone call from my husband's father; he was just recovering from a heart attack. He asked us if we could accompany him to a family wedding in which we had also been invited. The Bride-to-be was my hubby's cousin whom he had not seen since he was five or six years old. Of course we had to go whether or not we accompanied his father, and a couple of days later we recieved an invitation to the evening reception.
It was July, I remember that much! My business was booming, I was so busy. We'd won a contract for a local tycoon's sportswear franchise, and we were flat out with work. I say we because I had to employ thirteen other people for the summer. I already had five girls working for me then.
The weekend of the wedding drew close and although we'd recieved an invite with the date, time and venue upon it, we couldn't find the card. My hubby said it was Saturday and I had no reason to believe it wasn't. The plan was to join his father at the evening reception and then take him home afterwards, easy.
All that week leading up to the wedding, I was so busy that I didn't know if I was coming or going, all I knew was we were to be at the reception for 7.30.
I worked Saturday morning, and then went into town for a gift for the Bride and Groom. With that in hand and our finest outfits chosen, we were ready for the night. I rang my hubby's father when I returned home but he must have left early because there was no reply. It wasn't important just a quick call to inform him that we'd be there just after 7.30.
My daughter was jumping up and down with excitement as we dressed for the evening. She was wearing a new dress and looked a picture, we wore our finest gear. Finally we set off for the venue and got there bang on 7.30. " How's that for timing" my hubby said as we walked into a dark noisy room with music blasting.
" Where's your cousin! I asked " Well, she's the one in the big white dress" said my hubby rather sarcastically. " She's changed a bit since I last saw her" he remarked as we drew closer to the party and I just laughed and pointed out to him that he was only a mere lad then. We stood there for a short while, then the Bride came over and welcomed us fully into the room. " I'm not being ignorant, but which side of the family are you from", she asked.
My hubby smiled and said " Don't you remember me, I'm Steve, Des's lad, your cousin". She laughed, put her arm around him and told us to go and eat some buffet, relax and enjoy ourselves.
The room was really crowded, this was a huge affair, and I didn't think my husband's family had it in them to produce such a lavish reception.
We sat at a table with some other people, They asked who we were then began to talk about all the little things Steve and his brother got up to when they were kids. I assumed without really asking that these were his Aunts, or perhaps other long lost cousins. Our daughter was dancing to the Spice Girls, but I was worried. I was worried because we'd been there almost an hour without seeing his father. I asked around the table if anyone had seen Des! Everyone kept shaking their heads, "It's been a long day love" said one of the party " Perhaps he's gone home to change". I was a bit more skeptical than that. I was concerned about his health and what if! My hubby was on his second plate of delicacies and well into conversation with people I had never met before. I was getting very uneasy.
I tapped my hubby on the shoulder and shouted, as the music was so loud. " Go and ring your dad, he might be ill" He nodded and promised to go after he'd finished this huge plate of allsorts. Finally after me nagging him for half an hour, he went. I didn't want to ring him myself because if he was ill he wouldn't tell me.
Our daughter was still jumping around the dance floor, was bright red in the face and her hair was wet with sweat. I was talking to his Aunt, or whoever, when my hubby returned from the phone. He tapped me on the shoulder and tried to whisper something in my ear, but the music was too loud and I couldn't hear him.
He beckoned me to a quieter corner of the room and I made my excuses from the table. He looked troubled and very upset. " Oh no, is your dad okay! I asked. " He's fine, but we're at the wrong wedding" " What! I snapped " What do you mean?" " I mean we're at the wrong person's wedding. It was yesterday and my dad's not pleased". " Never mind your dad, how on earth are we going to get out of this one! "I began to shake and suffer an overwhealming sense of doom.
"We'll have to tell them" he said. "We'll come clean and apologize" but how could we do that after we'd been there most of the night, eaten most of their food and been given drinks from complete strangers.
I decided to make a run for it, to get our daughter off the dance floor and slip away somehow, but my daughter was loving the dancing and refused to leave the floor, but a promise of something nice on the way home did the trick and we made our escape. We managed as far as the door when a voice shouted from the side. " Where are you going?" It was the Bride. We'd been seen.
My hubby decided that the game was up and he sat her down on a chair beside her new husband. He began to tell her about the mistake. I was dying with embarassment and I just wanted the floor to open up so I could jump in. Then the broadest cheekiest smile spread across the Bride and Groom's face and then it turned to laughter. They handed back their present, tears in their eyes from laughing so hard. We refused to take the present back, after all we'd had a free night with people from another tribe.
We were asked to stay the rest of the evening, but I could see the news spreading around the room and I just wanted to leave. With that we made our umpteenth apology and left.
The following week it was to make the local newspaper and was a topic of news on local radio. My staff at work all thought it hillarious and was the subject of many discussions at lunch for many years to come.
Now we always check the invitation and I never trust my husband's judgement on relatives.



Posted by CFMBabs , 01 October 2006 · 987 views

Don't you just hate Sunday's, I do! Family snoozing and the day never seems to get going, D'ya know what I mean!
Today is no exception to the rule. I awoke to the sound of knawing, hooting and a very unhappy dog running around my trailer, yes, we're still in the trailer.
My constant moaning at my husband about the never ending building project is wearing thin. I'm like an old record he say's, but what's unatural about wanting a house to live in!
We've been homeless in a loose sense of the word since 2002 when we decided to rebuild the cottage, since then it's become a major project all because my parents who lived next door decided to leave. Then we had not one house to rebuild, but two, as both were in desperate need of attention.
My husbands estimation at the time was six months and even that seemed like forever. What followed was four years of bad luck, bad management and ill health.
It's fast becoming winter, the air is very damp and the nights are drawing in. I can see another festive season in a tin can, that's my pet name for the trailer. Every deadline we set ourselves came and went, the latest one being end of October, I don't think so! The heating is causing a problem since the new chimney is smaller than the flue pipe from the woodburning stove. There is a way around the problem, it's just a matter of what's allowed by the building standards,which are very tough in this country.

My own little project for today will be making Green Tomato Chutney. I don't know why I do it since I can't eat the ###### stuff! I just end up giving it all away. It keeps me busy for a short while and keeps me warm too. I noticed that the recent storm had brought down a large number of apples from my tree and I don't want to waste them. My hubby is considering making cider but he'll never do it. Funny how some men think of food first and then alchohol. I think mine has it the wrong way around, drink, food and build a house! In that order and by saying that, I've just realised why the house isn't finished, Mmmm I'll use that in my next tiff.
Our next project is collecting that goat! My hubby persuaded the local Brownie pack leader to pick it up for us in her huge 4x4 vehicle with a horsebox on the back. His method of persuasion was to appeal to her softer side especially where animals are concerned. He told her that if the goat wasn't moved by Sunday from the local pub, it was going in the chefs curry! So she immediately enlisted the help of 5 little Brownies and another leader to assist her in catching the goat and persuading it to climb into the trailer. I can see a pantomime developing here!
I'm staying well clear, and that's why I'm making Green Tomato Chutney, get the picture!
My geese are quiet. I'm always suspicious when they're quiet, what are they up to!
My hubby's still in slumber, my daughter too, and my fingers are becoming quite numb. Sunday is such a lazy day!


What A Week, What A Day!

Posted by CFMBabs , 29 September 2006 · 874 views

Argggh! can you hear me screaming. I wrote this piece once and the whole thing disappeared right in front of my eyes. So here goes again.
Boy! I've had a frustrating week. Besides having sclero, running a dangerous farm animal sanctuary and having a blocked tube, I've also had the usual run in's with the medical profession.
I have not one but two different hospitals, yes, two, sounds straightforward, Nope!
My problems began earlier in the week when my feeding tube just blocked up. I was running round in circles for two days and then finally today I met a freckle faced jam jar bespectacled secretary, whose sole purpose in life was to file her fingernails to the wick! After I'd stood there half an hour or so, she put down her nail file and asked what I wanted. " Can I help you! " That word of course does not exist in the NHS. I explained about my tube and that it was blocked. She began her response sounding like that ###### owl that keeps me awake every night. " Oooh, I think we can't help you today, not here" I was slightly confused by this and pointed to a sign above her head which said 'Gastroenterology Dept' She looked up like she'd never noticed it before and said " Yes but there's no one here today who can help you" I gave out a huge sigh after what seemed like a million phone calls to and from different people all pointing me to this department. " You'll have to go to Preston" she said. Preston is my other hospital, the one which looks after my tube. Manchester is my sclero centre, so that explains why I have two.
I set off amidst the rush hour traffic, straight up the M6 motorway in Lancashire. I heard on the news that there had been an accident involving two vehicles right where I needed to get off. To make matters worse, I was sandwiched between two large oil tankers and a geek in a landrover with what looked suspiciously like the non helpful secretary I'd just left. I finally exited the motorway and arrived at my destination. The next trial was to find a parking space. You couldn't get a piece of tissue paper between parked cars, and I knew I was in for a long day. Finally a space became available and I shot in, much to the annoyance of another motorist who was also waiting for a space but I was there first. I was tempted to make a rude gesture, but the urge just fizzled away as I got out of the car.
I got to the department and much to my surprise I was expected. I was led into a room and given all the sympathy I justly deserved. Finally someone who knew me, about my condition and was prepared to help me. She lay me on the all too familliar couch and began to push and shove at the syringe attached to my tube. She was labouriously pushing and shoving, grunting and groaning, then finally, whoosh, I let out a scream and she let out a well earned "Yes" I shuddered to think what anyone passing by outside must have thought, dare I say climax!
Much to my relief and her delight my tube was free and so was I, now for the drive back home.
I arrived to a welcoming party of two cats, one dog and nine geese, all hungry and waiting for me. The biggest animal of all, my hubby was coming home for his lunch and I got there just in time.
So now I'm writing this, for the second time today. I've just been distracted by an irate motorist honking at the gate. My clever hubby has left the gate open and my geese are all over the road and having a honking competition with the driver. The dog's barking at the commotion and I've just been verbally abused by a man in a bright yellow junk heap of a car outside my gate. Surely he was having a laugh when he bought that big yellow banana, small wonder the geese were honking, it sounded like laughter to me.
So what a week, what a day, what a life. I'm going for a lie down before anything else goes wrong, and I think it will Y'know!


Good Old Days!

Posted by CFMBabs , 29 September 2006 · 988 views

Mum, do you remember the war she asked! an innocent question indeed
I'm doing a school project and an old person I need
How old do you think I am!, you cheeky little chump
You never ask a lady her age you might just get a thump
Well do you remember the war or not! I'm simply asking you
Which one are you asking about!, please not 1942

I was just a little twinkle in a very young lads eye
I wasn't born till the 60s and I won't tell you a lie
I was raised to the sound of the Beatles 4 lads from Liverpool
And I was just a little kid skipping off to school
We didn't have computers then in fact we had nowt
And if we couldn't afford to buy it we'd simply go without

I remember watching the old TV it was black and white back then
And gran and grandad argued about who'd switch it off at ten
They wouldn't let me watch it if the programme was too late
And if the news was on at five o clock my programmes would have to wait
They were never really violent, no swearing or bad scenes
In fact I wasn't allowed up late till I was well into my teens

So, No, I don't remember the war, perhaps it's just as well
Coz I have happy memories and only those I have to tell
I know that thing's must have been hard, my gran she told me so
And food was rationed for everyone, the mountain was so low
They didn't have fresh fruit or veg and sometimes not enough
They made do and mend with everything, they really had it rough

I remember she told an old story about a bomb that never blew
And kids all climbed upon it till the boys turned up in blue
They took it to the munition works and melted the whole thing down
And made another explosive device to throw back at another town
The windows had to be covered, no lights allowed after dark
And only the sound of the sirens and a lonesome doggy bark
And when it was all over, they thanked their lucky stars
And climbed out of their shelters like they'd been behind cell bars

My gran she died in the 70s and then I was a teenager too
She laughed at all my clothing, the flares were something new
The men all had moustache's long hair and baggy suits
And some of them had shaved their head's and wore red bovver boots
I told my nan they were skinheads, the others you could see for a mile
But all she did was laugh at them. "What a mess, you call that style"
They need their hair cutting, the others they need it to grow
I'm sure they feel uncomfy and doing it all just for show.
And when I came home in hot pants, she nearly had a fit
You'll rip those pants if you bend down, or even try to sit
You can see every little crease and every little fold
You'll catch your death if you go out you'll be too ###### cold.

Now I'm what you call old, 45 clapped out no good
And I would have those years back if I only could
For you may have your mods and cons and short of nothing it's true
But we knew how to have a good time and we didn't need owt new
Our friends well, they were trusty, and on who you could depend
And if you needed any help a thoughtfull hand they'd lend
So, No I don't remember the war, I kind of wish I had
Coz all the things that happen today, back then were'nt so bad


Summer Recess

Posted by CFMBabs , 28 September 2006 · 883 views

Oh no! the summer school holidays, six weeks of blowing lids
One mad hormonal teenager, and a shopping mall full of kids
The moaning I hear from morn till night is getting on my nerves
And the criticism from one so young is more than one deserves
Why can't we do something interesting instead of sitting at home!
I swear I'll be climbing the walls and be wishing I was alone
Why is it nothing will do, I suggest a walk into town
The look upon my daughter's face is permanently in a frown
Ugh! and what will we do when we get there, boring is all she says
And slams the door of her bedroom and there all afternoon she stays
I sigh and wonder what I was like at her age, back then
I was playing out with my friends, had to be in bed by ten
For 15 was a tender age and only just into boys
I'd rather of had an ice cream or play out with my toys
So now I'm sounding ancient, perhaps I was boring then
I was almost 27 when I got into men
My mother was always warning me, stay away from boys I knew
And grow up like your mother, I'm just like her it's true
I can hear it in my lectures, I used to call them that you see
And now I'm saying the exact same thing, to grow up just like me!
So round the shops she drags me purse and bags in hand
First she goes to a top shoe shop where a pair is almost a grand
Next we're in the most expensive boutique, a pair of shorts for forty pound
And she's screaming right across the shop, another pair she's found
I'm glad her father's at work today, for patience he has none
No wonder his hair is fading fast with her it'll soon be gone
She spends her cash like water, mind you she saves it too
And everything she wears to date is always fashionably new.
What ever happened to hand me downs or cheap clothes from the corner store
These kids today are so fortunate the choice is so much more
This pair looks ok does it mum! I can see she's in a strop
I didn't say I liked it enough, so she stormed out of the shop
You didn't like me in those shorts I could tell with the look you gave
It wasn't the shorts I told her, it's the money you should save.
To her shopping is a pastime and really just a game
I hate her when she's in this mood, but love her just the same
How many weeks have you got left, I ask in anticipation
Then find myself wishing I wasn't in this situation
Are you tired of me already, she asks as it's only the start of the break
No' I reply with gusto, it's just me feet are beginning to ache
All this walking round the shops is all too much for me
Lets go into a cafe and have a cup of tea
I sit down at the table and look into her eyes
The image of her father and some of my family ties
To me she is beautiful, the most precious thing I own
And now I see a woman, my how she's grown
I love that child with all my heart and this trip seems all worthwhile
Just to see her happy face and that wonderful cheeky smile
I'd give her all the earth, if the earth is what she required
And place it on a silver plate, but my feet feel so tired
Let's go home my sweetheart and get away from town
I'll make us a nice little dinner even though for me it won't go down
The end of the day and we head on home after all that shopping muddle
We curl up on the settee and give each other a mighty cuddle
I love you mum and I love you too we pretty much agree
But those shorts you tried on dear, were too short above the knee
I knew you didn't like them, all you had to do was say
But we'd both had enough by then you see and it was time to call it a day
Don't tell my dad what I got, you know that he'll go mad
I don't think he ever had any clothes when he was just a lad
Go hide them away he'll never know just wear them and tell him they're old
He'll never know the difference if he is never told
I'm the mother of a teenager, my job is mum and friend
I love her dearly with all my heart and to the earth's end
She's grown into a woman and soon she'll be wed I know
But for now she's still my baby and always will be so.

Barbara Lowe



Posted by CFMBabs , 27 September 2006 · 888 views

I'm having one of those days! Y'know the one's where you need to scream but no one listens. My whole life revolves around my family, feeding them, the animals and trying to feed myself. So what happens if I can't feed myself. like today. I'm bunged up, blocked, totaly backed up with liquid nutrition. My tube is solid, kaput! I went about my usual business this morning after a really uncomfortable night. My neck, shoulder and arm were killing me, not to mention my feeding pump kept bleeping every few minutes or so. In the end I growled, got up and switched the ###### thing off.
I got back to sleep eventually, must have dreamt about something because I woke up wondering where in the world I was! It was 7am I knew that much. I got up to go to the bathroom then shot back as my tube pulled me back towards the machine, ****! I'd forgot to disconnect it, more worrying I'd forgot to flush it. I woke my husband and daughter and I just knew today would be challenging, so far it has been!
My hubby now off to work and daughter scurrying around in her bedroom, I decided to flush my tube. I knew deep down that it would be blocked, that stuff sets like glue. I was right! I pushed, pulled shunted, you name it, but the stuff wouldn't move. My daughter shouted from her room. " What on earth are you doing! you sound like the cat when she's constipated" Very funny I thought, but true. I needed her help but I wasn't getting that until she'd finshed her daily routine and the house smelling like Jennifer lopez's boudoir.
Finally she emerged like she was going to her prom, only she was going to school. I asked her to try, and only after a slight moan she set about pushing water through my tube, I have to say without success. She pushed so hard at one point that the syringe blew and water went all over, her face was a picture. " I hope that was just water" she scorned at me, and only after proving that it was, she forgave me.
Next stop was the nurse. Have you ever tried contacting them in an hour of need! Sure they're okay when you first get to meet them. " If you ever want anything, just ring we'll be there, no problem" Okay! I rang. I hit a brick wall, a secretary from the middle ages and a whole lot of " Oohh, I don't think so" So what next!
I called at my general practitioner's surgery in the next village. The resident nurse there nervously told me that she'd not done one of these in years, well, that sure gave me confidence. I should have walked out there and then and saved everyone the bother. She pushed, pulled, moaned and then gave up. I left with no more than a phone number to call a speciallist, speciallist, I ask you! A speciallist in pushing and pulling and telling me it's all my fault, yeah I know!
So here I am, completely wasting my day. My hubby will be home soon for lunch and I'm still waiting for mine. Hard to tell at this stage if I'll ever get it moving, but one thing is for sure if I don't, I'll be in hospital for a couple of days whilst they scratch their heads wondering whether they should replace it or not. I'll just go with the flow -- whatever!
My hubby came home with a bottle of soda water for irrigation purposes. He tried and tried but to no avail, "This tube is definately blocked" he exclaimed! with that he returned to work.
I'm not having a good day, since when did I ever! you can have a moderate day, even a so, so day. Etsy kietsy as they say in greece, but never a good day. So before I sink into feeling sorry for myself, I'll go and do some theraputic shopping before the daunting task of contacting the hospital. The ovewhelming doubt of, should I, or should I not keep swirling around in my head. It's 12.30am, I'll go shopping first and then I'll tell them later. I could do with a few days away from the geese.


Crest Poem

Posted by CFMBabs , 27 September 2006 · 943 views

What's the meaning of Crest! wouldn't you like to know!
It's not as bad as you may think, my rheumatologist told me so
So what's the C, I hear you say, well calcinosis to me and you
And R stands for Raynauds and it's what turns your fingers blue
E is for the esophagus, I have problems there, Oh my!
S is for sclerodactyly, it makes you look younger, Mmm not I!
And T for talengectasia, hard to say and harder even to spell
The symptoms of crest I have all 4 and the 5th one now as well

So what did I do to get such a thing? Is it something that I ate
Is it something from my teenage years or just plain old fate
Did I overdo the drinking, going out and having fun
Then why is it my friends are all ok and I'm the only one!
Did I enjoy my life too frantically, live my younger days to the full
At least I can look back and say that my life was never dull
Did I stay out too late in the evenings and come home early dawn
And go to work the very next day without so much of a yawn
Am I being punished for enjoyment or something else maybe!
If I knew then what I know now, I'd have listened to mum you see
She always warned, you'll catch your death going out dressed like that
But it wasn't hip to go outside with wooly jumper, gloves and hat
She used to roll her eyes and shake her head "You'll rue for that one day"
Those words she said come flooding back and I remember them today
So maybe I am partly to blame, I caused my frankenstien too
This monster now within me that turns my body blue
If ever they can find a cure and make it go away
I'd be the happiest person you'd ever see today
But at least I know I'm not alone and there is always you!
Someone I know I can turn to and always see me through..


Claiming For Disability. Can You!

Posted by CFMBabs , 27 September 2006 · 826 views

I've noticed many times on the messageboard the unsuccessful claims for disability. I've been down this road so many times.
Here in the UK the laws on disability seem the same although worded differently. In my experience, and I qualify for that title since I've had numerous claims turned down, I concluded that it's not how you represent your claim, more on who actually approves or disproves it. A general practitioner will only have limited knowledge of scleroderma, my own general practitioner is no exception, having admitted that she has never before had contact with anyone with scleroderma, and it's generally recognised that a doctor will consider themselves lucky if they ever come across a patient with the condition throughout their working life such is the rareness of the condition.
So how do you go about claiming! Well of course it depends on how scleroderma affects you, although you will undoubtedly have a degree of disability that qualifies you for the criteria. In my own experience, my general practitioner refused to sign anything and not even return a report to the DSS, which I have to say I find very infuriating and arrogant. Fortunately I am a born fighter and I simply wouldn't lie down on this one and I kept on applying until someone got so tired of reading the forms, they sent an independant doctor out to see me.

The forms are meant to catch you out. I found myself contradicting myself on many occasions throughout the form. I remember messing up pieces of paper, sheets I'd written to base my claim without writing them on the form first. I decided that since they only wanted to know about my worst days, I would base my claim on the winter months only. I began with writing something like I have more bad days with my fingers and toes in the winter and on cold days.
The forms also asked what I could reasonably do, reasonable for me would be able to walk a short distance outdoors without pain, any more than a short distance would affect my circulation and my feet would be numb, painful and uncomfortable. I concluded that I could not reasonably make a meal without discomfort, peeling potatoes with or without an aid could trigger a raynauds attack, not to mention the total dysfunction of my fingers to work properly due to scleroderma. Handling any kind of cold meat, uncooked veg or even opening packaging or tins can cause distress and pain or even a total inability to do the job. I also stated that holding a pan and lifting it from the cooker was very difficult for me to do. I told them about the burns I'd recieved due to numb fingers after putting them into hot water and not feeling the temperature, and how the bathtub had caused burns to my feet becuse of my inability to test the temperature of the water.
I told them I needed help to prepare a meal, help to bathe, dress and wash my hair. I couldn't squeeze the shampoo out of the container or wash my hair poperly in the shower, never using a hand held shower.
I always wear loose clothing, no zips, buttons or fasteners that require any kind of dexterity.
The forms were all based on what you could reasonably do, and without sounding too disabled, I answered all the questions as honestly and as detailed as I could based on my very worst days.
I also continued to explain what my everyday life was like. Shopping, handling cash and loose change and how carrying a bag woud trigger another raynauds attack. Taking a bus or train and fumbling with change, even opening a car door or handling the keys. All these things we take for granted and we don't really take notice of. What we have to ask is, can a normal person of my age do this without the trouble we have!
I got letters from people who knew me best, my nurse, support group and The Raynauds Association to which I belong. My general practitioner could not know all these things about me because she only ever sees me when I have something other than scleroderma to complain about, and let's face it what more can there be to complain about except a sore throat, hay fever or a headache, I'm sure there are other things too. And the very fact that you're at the general practitioner on that day is because you're well enough to go outside and see her, so all she sees is a lady with sclero and a sore throat.
I'd welcome anyone who wants help in filling in the forms. I may not be able to help, but I can give you some encouragement. The most important thing of all is that you never give up, that's what the doctors are hoping you will do.

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