Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.

CFM Babs from Chorley FM


Big Old Tree

Posted by CFMBabs , 12 November 2007 · 778 views

Oh no! the leaves are falling the winter months begin
And I am contemplating whether to go outdoors or in
The plain old truth of the matter is, I hate the winter chill
It sort of makes me grumpy and also makes me ill

I'm like a little eskimo with my clothes of heavy attire
I'd sooner be in Australia, even then in front of a fire
I was shivering so much in Egypt that they had to warm the room
I'm sure that I was more stiff and cold than good old Tutenkhamun

I wrap up warm in summer even Greece I take a wooly
I never get in bed naked, well actually not fully
I never seem to break a sweat or admit to being hot
I think my little body has simply just forgot
Scleroderma wotsit? And Raynauds I have too
My body feels like plastic and my digits all turn blue

I'm such a weird person, can't function during attack
I'm sure my brain's connected to my fingers at the back
It seems like my head freezes the moment my fingers go
I'm in my own special world where no one wants to know
I'm like a little robot who's batteries are running low
messing with my reactions, winding down to slow

Soon all the trees will be standing bare, poor trees do they feel the cold too?
Shedding all their springtime green, turning colour perhaps they do?
Then I will give my sympathy as I watch the winter frost
Covering all the branches when all the leaves are lost
Poor old English oak out there on it's own
Hundred years of winter is how long it has grown
And I'm sat here moaning, how selfish could I be
For those of us less fortunate, even the big old tree.


Life Goes On -- Let Them Eat Cake!

Posted by CFMBabs , 09 November 2007 · 745 views

If you looked at me without knowing I had a chronic illness, you'd think I was the girl next door, well woman actually! The great thing about this disease is that you can look amazingly well -- even fool the doctors, hard to believe, and that's where the problem lies. If I had something more visual or a condition that most people are familiar with, would I be treated differently?

Yesterday for instance. I was doing my radio show. Not one of the presenters knows anything about my inability to eat, or that I suffer from a rare condition. I mean it's not something you gladly tell people is it? I was asked to eat a piece of cake I'd made, live on air. What could I say? If I didn't eat it, was it not good? If I did, I'd be in some pain for the rest of the day -- I ate it! "Mmmm, delicious with a coating of butter," I said!

It stuck firmly in my throat and afterwards it was difficult to speak. I had to tell this guy that eating for me, is a no no! I approached the subject very tentatively, so tentatively that he didn't have a clue what I was on about? So I came right out with it. "I have a feeding tube." There I said it! His faced changed from wonder to amazement.

"I'm sorry," he said. Now that's the reaction I didn't want. You see, I don't want sympathy or anyone to feel sorry, I just want to be treated as a normal person with a disability that doesn't affect my life in such a way that I have to explain my self every time. As for the cake. It stuck there for hours until I finally managed to get rid of it, and without going into detail I think you know what I mean.

Now I have several presenters at the station all going out of their way to make me comfortable. I'm not complaining but, please enough is enough! I hope I have cleared the air and not dug a huge hole for myself. Time will tell!



Posted by CFMBabs , 07 November 2007 · 723 views

My favourite home visit is the 6 monthly follow up with my dietician. I must be an awful sad person when I look forward to a visit of this nature, but I do! This young lady saved my life, and if you think I'm exaggerating -- read on!

There are times in everyone's lives, I'm sure, when you feel as though you're banging your head against a brick wall, no one listens, no one wants to know and no one cares. I felt like that two and a half years ago. I was going through a very difficult time with my illness. I was new to enteral feeding, felt very frightened and alone. I felt alone because actually I was! It seemed as though the medical profession had abandoned me, almost like I was exaggerating the whole thing. I was left to my own devices and if I complained then that's exactly as it looked -- I was a complainer!

I'm not a complainer; if I was they'd have known about it. I endured a nightmare scenario with relative calm and patience and if I'd known better at the time, I would have screamed a lot louder. I thought it was unreasonable for me to expect the NHS to do anything more than they already were so I just sat it out.

My dietician was very understanding and called one day when I was having one of my worst episodes of vomiting and pain. Realising this wasn't right; she set about complaining on my behalf and getting right to the heart of the problem. The result of her efforts was that I got the treatment I so badly needed and total attention to my needs. The pain had been caused by pancreatitis and not some fictitious pain that I invented, which is exactly how I felt they treated my situation. My tube was also kinked and difficult to use, it wasn't my inept usage as suggested, and I was vomiting because it was simply in the wrong place. I could have ended up with peritonitis or some other 'itis' thing! It was a desperate situation and yes, I'm right in saying that my dietician saved my life!

Today, we discussed the possibility of more surgery. We chatted for a while about the implications and whether I would be better off with or without intervention. I think we both agreed that it was a no win situation, without the surgery I may choke, with the surgery things may not be better after all, and all that will have happened is a whole lot more pain and suffering for nothing. Of course, it may make things much easier or solve the problem entirely. This is the dilemma I find myself in -- no wonder I put it off till next year which in hindsight is only 7 weeks away.

Decisions like these are something we get used to with a chronic illness and perhaps we decide things a little too hastily. The promise of greener grass on the other side of the fence is all it takes sometimes but in reality who knows?


Post November 5th

Posted by CFMBabs , 06 November 2007 · 700 views

Bonfire night! -- GuyFawkes night! Whatever! It certainly went off with a bang.
For once, it wasn't raining and believe me that's a plus. The huge pile of rubbish my hubby found lying around, burned with a red hot glow lighting up half the country lanes for miles and the rockets he bought from Joe Bloggs! delighted my father and daughter, although they were some distance away.

I can't say that I'm a fan of fireworks these days and I may sound rather like a spoilsport but I'm glad when the whole thing is over. You end up stinking like a smoked ham, freezing your body parts, and all for what? 20 minutes of crash bang and fizz and the entire evening is over. If you ask me I'd rather sit in front of a warm home fire with feet up watching the box. Of course there's not much on that either and being on my own all day, I'd rather hear about my family's day at work and college, than what the dog did to the geese or vice versa!

I went to bed last night with an incredible sore throat and the shivers. I was feeling less than okay around 9pm and figured the bed seemed a more inviting place than sat in the living room watching some rubbish on TV. I always worry when I feel a flu like symptom coming on and it's with good cause. I can't afford a bout of flu at the moment or at any time actually. Its usual course nearly always ends up with a chest infection and forbid the thought, pneumonia! Thankfully I woke this morning feeling much brighter than I felt last evening and I'm hoping that the flu jab I had did it's job -- certainly seems that way.

So despite having a headache and a few sneezes, I'm generally okay, if there's ever a case to be okay with scleroderma. Funny how you accept and adapt to a condition and get used to it. My defination of ill is now when I get something other than I've already got! -- If you get my drift. I don't see sclero as being ill any more, more like a condition that is part of me rather than affecting me in a sick sort of way. Another symptom merely complicates things and you end up not knowing whether it's scleroderma related or not! Now I'm digressing.

So November 5th over for another year, now it's full steam ahead into the silly season! I have 9 guests for dinner this year and one turkey won't be big enough for sure. Those geese outside are looking decidedly nervous, but I couldn't harm them so I'll buy a ready prepared bird -- coward or what?


Dreams Of Summer

Posted by CFMBabs , 05 November 2007 · 782 views

I got on my rubber boots, my gloves and my hat
Off to my local town, that's where my place is at
I love to browse around the shops, though hubby doesn't know
He likes to keep his pennies, and watch the savings grow.

My daughter spends her cash like it's going out of fashion
And when she opens her wardrobe, my hubby's face is ashen
For she has so many clothes and I have a collection too
Though often it is hidden "Oh I've had it a year or two"

When the time comes for a vacation, the cases we will stuff
Poor old hubby has so little, he never has enough.
With passports ready at the gate, we girls are waved right through
While our personal beast of burden lags further down the queue
He's laden with all the shopping, perfumes and the bags
And under both his armpits are our holiday girlie mags

The plane takes off for warmer climes and hubby falls asleep
He's snoring over the engines, he's collapsed in a heap
Not one thing will stir him not even turbulance in flight
I think I'd better wake him, he'll never sleep tonight.

Bump go the wheels and we're back in greece Yippee!
Can't wait to get off the plane I love it there you see
And hubby trails behind the crowd, as we begin to board the bus
He's dragging all the baggage and most of it's for us

Dreams of past summer vacations are all that we can do
Winter is upon us, the cold day's and feeling blue
Just wait until next year when we'll be off again
We'll just have to put up with wind and all the rain


Remember, Remember The 5th Of November

Posted by CFMBabs , 03 November 2007 · 658 views

November 5th, traditionally a time for celebration in the UK. This day stirs up excited children and deniably excited adults to what can only be said as aerial carnage and choking acrid air. The date refers to a time in history long ago (1600's) when it was okay to be disgruntled with royalty, but the penalty for treason was the loss of your head or some other grusome end. Guy Fawkes Night, Bonfire Night call it what you will, but it's sure to go with a bang!

As for me, it's no fun standing around a bonfire unless I can get almost on top of it. I can't eat, so having traditional fare is out of the question. It's usually wet underfoot and, if recent years are to go by, it will probably be raining as well. These days our family celebration is somewhat down grade. My daughter has grown out of fireworks and standing in a field in rubber wellington boots, well, this does her street cred no good at all and, I must admit, I share her disgruntled view.

Back in my childhood, I would have been looking forward to this night like December 25th. My dad would build a bonfire, buy a box of fireworks and we'd have a mini display in the garden. My mum stayed indoors, fireworks never became her favourite pastime, and I would be running around like a headless chicken with mud up to my eyeballs and jumping up and down with excitement. The rockets would soar into the sky, bang and then fizzle -- not a great display of arial delight and colour, not like the one's of today which are so like the real thing. I saw one last week in a shop that I'm sure you could sit on and ride. The display nowadays is like the millennium all over again.

Tonight is our November 5th. Black peas are on the menu -- parched peas as we know them -- with lashings of vinegar. Baking potatoes wrapped in tin foil and thrown onto the fire as it dies down. Treacle toffee, hot dogs and Parkin, a sticky treacle, oat and ginger cake that you either love or hate -- I loved it! The weather is grim as usual. Will it rain tonight? I suppose it will, it never fails, and the fire will go out like a damp squib and the fireworks will have to wait.

As for me, well! I'll be doing the food no matter what. There's nothing to spoil the fun except we may have to do it all again tomorrow.

Guy Fawkes, you have a lot to answer for mate!


All That I Am - 15 (last Chapter)

Posted by CFMBabs , 30 October 2007 · 750 views

(cont. from Part 14)

All that I am is a 47 year old woman who never really amounted to much except for leading a very different life to most.

I never made my fortune – the streets were not paved with gold after all!

I never travelled the world – I got as far as Greece which I suppose I should feel grateful for, it's further than most people ever got.

I didn’t get to have a large family but I couldn’t ask for a better one. I have a lot to be thankful for and I will never forget those who have it worse.

I'm middle aged and my achievements may not be all that I'd wished for but I made it so far -- ill or not!

The old saying is, “The best is yet to come.” Well I sure hope so – the last few years were not so great. I have scleroderma to thank for my illness and Raynaud’s to thank for my inability to take money from my purse, open a door with a key and not being able to build a snowman.

Life is certainly an open book, a box of chocolates, a script waiting to be written! So whilst I wallow in and out of self pity, I'll give time for the rest of my life to unfold and hope that every chapter will be a new adventure for me instead of looking back to what has been and lamenting what could have been!

Thank you for allowing me to share my life with you. It ain’t all bad after all.


All That I Am - Part 14

Posted by CFMBabs , 29 October 2007 · 712 views

(cont. from Part 13)

Pancreatitis! Yet another diagnosis to grace my ever increasing list of ailments.
It wasn't my esophagus this time but I had more than my fair share of attention from medical staff in a strange hospital with my long list. My battle with abdominal issues, and the terrible year I'd had so far, just complicated the whole situation further when I explained that I needed another bout of surgery to take down an unsuccessful wrap. I was introduced to another consultant who sat beside my bed with a cute smile asking if I was an alcoholic. I've been asked many things in my time but never if I was a drunk. "I think you may have gallstones," he said shrugging his shoulders." So not only did I have pancreatitis but possible gallstones as well!"

I was wheeled into an ultrasound room. I was very uncomfortable at this time -- pancreatitis is more than uncomfortable, I can tell you. I lay on a couch and the sonographer stroked the little strobe backwards and forwards. The gel they put on at first was enough to give me goosebumps all over my body, and the pain, well, let's just say it was not the best 20 minutes on a couch I've ever spent.

The results came through very quickly and I did indeed have gallstones. The plan was to remove them in a couple of days but since I was already on a waiting list in Manchester, they decided to hand me back to my own consultant there. I was in hospital for 4 days then I was allowed home for a couple more. I saw my consultant in Manchester and a date was set for both procedures to be performed by open surgery.

I was very nervous when that day came around. By all accounts it was a major operation. I'd opted for epidural pain relief afterwards and would have to spend at least a few days in HDU directly afterwards. I was in a small room with numerous green-gowned people. What happened next was no surprise as they battled to site a cannula, finally placing it in my groin. The epidural was sited in my back and by this time I was so cold that they wrapped a silver foil blanket around me. I think my surgeon had fallen asleep by the time I was anaesthetised, but after that I can only remember waking in a room full of machines, monitors and bleeping sounds.

I could feel anything, couldn't move my legs, but I had no pain. There was some concern about my blood pressure being too low so I was permanently strapped to a cuff which expanded around my arm every 15 minutes or so. The staff were brilliant. They did almost everything for me -- combed my hair, washed and changed me, in fact I felt like a child again! Then I had to leave, go back on the wards where things were much different. Left in a bed with some degree of pain and then I started vomiting. The scar accross my abdomen was quite large and believe me when I wretched the pain was terrible. I felt like I'd broken my ribs or at least that's how I imagined it would feel. The staff told me I looked awful -- I didn't need them to tell me, because that's just how I felt anyway.

10 days had passed. I'd just started to walk a little and take a bath. I was still very ill but going the right way. After another week I was home. The surgery had been successful, the wrap taken down and gall bladder removed, but I still had my feeding tube.

Two years of absolute torture and here I am facing those same old issues again. I have to make a decision and this time it's out of my hands. The decision on whether or not to have further surgery rests with me but with a dilemma: I could carry on like this indefinitely, but I could also choke in my sleep. To put the wrap back would mean going through the same procedure again. Am I strong enough? We'll see. I'm waiting for next year -- more swings and roundabouts!


All That I Am - Part 13

Posted by CFMBabs , 25 October 2007 · 748 views

(cont. from Part 12)

Back in hospital, in the same bed I'd left just 3 days previous -- it was still warm!
I was severely dehydrated and the pain and vomiting was getting worse. It was late September by now, I'd been in and out of hospital since August and I was beginning to feel very low. By now I'd had the nasal tube removed and a PEG (Percutaneous Endoscopic Gastroscopy) tube placed into my stomach. This tube was inserted through my abdomen via x-ray and was not a pleasant experience. The consultant, a man near to retirement, took the decision to re-operate and loosen the wrap, thinking it was too tight! The procedure was to be done with keyhole surgery as before.

So, after a couple of days rest, they revised the original surgery. I remember very little about the first 24 hours afterwards. I woke feeling very ill indeed. I had a urine catheter, was strapped to a machine which delivered pain relief and a monitor strapped around my arm measuring my blood pressure. I knew I was in deep trouble at this time. It was like a darkness spreading across my body, if I moved just 1 inch, I vomited violently. I was so drained, I was lifeless. A doctor sat at the side of my bed venting his concern. Scleroderma had got me it seemed although I didn't know why.

One week on, I was still in a semi-conscious state. My weight had plummeted and I was a mere shadow of my former self. I was on so many different drugs -- things for my kidneys, liver and a multitude of anti-sickness drugs that stung like crazy every time they injected my leg. If I have to be honest at this point -- I though I'd had it and that's no exaggeration of the truth, and deep down I think the medical staff thought that too!

I was transferred to another ward. They kept pumping me with a cocktail of drugs as well as feeding me artificially. My whole life as a bubbly person -- gone in a matter of 2 months. There I was lying helplessly in a hospital bed wondering what would become of me.

Then one day, almost like a bolt from the blue, I turned a corner. The dark cloud that had hung over me since the last surgery suddenly lifted and I woke one morning feeling totally different. I can't explain how I felt, or what had happened but it was very strange. I didn't feel unwell in any way. The nausea had gone, the overwhelming tiredness and the pain had all vanished. It was amazing!

I quickly recovered after that but there was still one thing that torments me to this day -- my feeding tube. I still couldn't swallow. I tried so many times to eat. Drinking was a problem too! I could take sips but that was all and that became the biggest concern of all. I'd lost 42 lbs in weight and although I looked like a babe, I felt terrible. My figure was startling -- my clothes didn't fit anymore and if I hadn't looked so pale I could have been the envy of my friends.

My life was far from ideal. My doctors were not pleased with my inability to drink properly, so a complete reversal of the original surgery was planned for a later date. I'd been at home in my little tin can. The dreaded mobile home was still our abode! The house had suffered a major setback. My family was so worried about me that they'd had precious little time for anything else. So there we were, house half-finished and me half right and half wrong -- what a predicament. To make matters worse, my parents had become so ill that they had to move to accommodations more suited for their needs, leaving the farm entirely to us to manage -- things surely couldn't get any worse, could they? But they did!

I was recuperating nicely. Sure I had this ###### tube thing and it's true I wasn't right health wise but I was home and pinning my hopes on further surgery to take this troublesome wrap down. It was a Friday, I remember that much. My hubby had just come home from work and daughter home from school. I was sipping a cup of coffee when something happened. My stomach just bloated and this incredible pain spread accross my chest. I was violently sick, couldn't breathe and collapsed in a heap on the floor. The paramedics were called and I was rushed to my local hospital. My hubby was sure I was having a heart attack and followed the ambulance to the emergency dept. What happened next was another chapter in my life. What else could go wrong?


All That I Am - Part 12

Posted by CFMBabs , 25 October 2007 · 791 views

(cont. from Part 11)

Building the dream was a term I've never liked to use. For one, it is more like a nightmare scenario. Four years living in a tin can and the worst years of my illness to boot. Our mobile home just large enough to swing a cat and small enough for absolutely no privacy. It was an igloo in winter, sweat box in summer and most of the time plain old damp! The events which took place after the front wall fell down might have made the decision to give up easy for us, but it didn't. My hubby was determined to carry on and I suppose this was the one time he happened to be right.

We sourced a stone mason who came and put back the front wall even better than it was before. My hubby and I set about rebuilding the brick gable and turning our new found skills into those of a carpenters, plumbers and all round house renovators, with a few arguments along the way. I remember standing back admiring the work when the postman arrived with a letter I'd been waiting for.
I'd decided to have elective surgery on my stomach, a Nissen Fundoplication (stomach wrap). I'd waited two whole years because in the midst of everything, they thought I had angina! Tests on my heart proved otherwise and I was rebooked for surgery. That was August of 2004.

I was admitted on the morning of August 25th. They immediately began checks and made me ready for surgery. The only thing they couldn't do was site a cannula. They tried in vain finally succumbing, sending me down to the theatre hoping the aneasthetist could do better. It was all getting rather panicky at this point until they managed with one last attempt and then I can't remember what happened next! It was evening when I finally came round. I was on oxygen and couldn't breathe very well. A nurse was close by and she came over to say that I'd given them quite a scare and asked if I felt okay. I didn't feel 100% obviously, but I'd just had surgery -- how was I supposed to feel?

I was given a drink of water which immediately came back so violently that I almost soaked the nurse. "Never mind," she said, "It usually happens." I was sleepy for most of the night and the next day I didn't feel much better. Another drink had come straight back, then another and another. I couldn't swallow anything. They didn't seem too worried, but by the end of the day they began to show some concern as I began to dehydrate somewhat. That night I began to vomit even though I had nothing inside my stomach. The nurse was becoming quite worried about my internal stitches and injected me every 4 hours with anti-sickness drugs. By the following morning I felt so sick that the doctor was called and a plan of action was needed.

They decided to place a nasal gastric tube into my stomach just to give me some hydration at first but after yet another day of vomiting, they began to feed me through it as well. It was now 4 days since admission and no sign of going home. They told me I would only be in hospital for 3 days at the very most, yet there I was 4 days and counting. I was begining to lose weight and I didn't look very well at all. After 10 days they sent me home with the tube still in situ and a whole lot of liquid nutrition. I was to go back in 2 weeks, but I never got that far. I became extremely ill. mostly due to dehydration. I couldn't feed and put water down at the same time and I was also begining to have a lot of pain. This began a whole new chapter in my life and one I'm still writing today!

Recent Entries

9 user(s) viewing

0 members, 9 guests, 0 anonymous users

Search My Blog

April 2017

24 252627282930