A pain shot in my mouth, "ouch" I've broken a tooth
I was sucking on a popsicle when crack it went, "Strewth"
I spat it out to my daughter's horror. My husband gave a cry
That's coz you've got wooden teeth and I gave out a sigh
It isn't enough to have sclero, but I'm falling apart as well
Soon I'll be wailing " Unclean" as I wave my warning bell
My hair is going thinner, my teeth are falling out
My skin is getting tighter, my lips I cannot pout
The greyness is taking over, I'm begining to look like mum
And I can't chew on anything, I suck it with my gum.
They don't have a cure for sclero and they don't have one for age
I guess it's just another chapter and I'm turning another page
I think I'm half way through the book, the rest is there to read
Another 20 pages and false teeth and specs, I'll need
For my eyesight is also failing, is there no end to my spare parts
And I'm joining the old generation before it even starts
The bathroom is full of hair dye, the comb is full of hair
I used to have thick brown locks and now it isn't there
I hope I don't go bald as well, now that would be unfair
No hair, no teeth and blind as a bat, would be too much to bear
My bones are creaking like an old wooden door
My neck is stiff and I can't look around no more
My sex life is a memory, I'd rather have a sweet
For me to get excited would be a proper feat
Gone are the days of passion along with all the zest
I take so long to get in bed, I get out again for a rest
My hubby gets all heated his anticipation begins to surge
But with all my layers of clothing he finally loses the urge
I dread the day but I'm sure it will come
When not only my fingers will be numb
I'll have my teeth in a cup of solution
And my eyesight will only have one conclusion
I'll look like my granny, be permanently cold
But I'll think myself lucky if I get that old
When I look back over my 46 years, I suddenly realise that, I either have a very good memory, or a very boring life. I mention the boring bit very loosely as I for one don't think my life is anything like boring.
I can't begin to put into context any one part of my life, most of it fortunately, has been very happy, or is it that I don't remember the bad times, whatever!
I remember one particular episode of my life being pretty wild. I was in my early twenties. I had a penpal-an American guy from Mobile. I loved to write and as it happened, so did he. He was studying here in England and I became his English friend, not girlfriend I have to add. He was residing in Canterbury and I lived here in the north some 300 or so miles away. We wrote almost weekly and when the winter holidays came round I invited him to stay at our humble abode, to which he agreed. It was 1982.
It was Dec 23rd and I was waiting for him to arrive at the train station. It was one of the worst winters on record and everywhere was covered in snow. I stood on the platform at Manchester Victoria, freezing my fingers off and jumping up and down to keep warm, when this figure appeared in front of me. I knew him instantly. He was extremely pleasent, nervous but curteous and was wearing the brightest heaviest jacket I'd ever seen. Anyway, after our initial greetings we caught a train to take us to my home.
The fire was built up high and my mum had made a meal for his arrival. He was so cold that he could hardly speak and he had the most dreadful head cold ever. We sat him beside the fire and my parents made such a fuss of this young man from Alabama almost treating him as a son. He spent the entire holidays with us and when it was time for him to leave, we asked him to stay in the Spring.
We continued to write throughout the year and when the Spring holidays came, he returned to us in Lancashire. This time he was more comfortable having met my parents previously. We went on several trips, to the English Lakes, York and the seaside. He told me that he intended to return home soon but he was hoping that we could still be penpals across the miles. We did just that!
The years passed, we wrote less frequently but kept in touch occasionally. Then I met my future husband, it was 1985. I didn't write again, and I think he understood because he had other commitments too. The years rolled on.
It was 1997, I got my first computer. I had a child and a wonderful hubby. I'd had a particulary tough year having just recovered from pneumonia. The next few years, my health deteriorated. I'd always had Raynauds and it seemed to be worsening as was my swallowing too. I was being passed backwards and forwards, different hospitals, different doctors, one misdiagnosis after another. I ran my own business, which against all the odds became sucessful, and I continued with my wilderness years as I call it until I was diagnosed with scleroderma in 1999. I often thought about my American penfriend and what he'd be doing now, but I didn't like to contact him as I knew nothing of his present life.
I was playing around with my computer at work one day when an employee asked me the name of my condition. She nodded and asked me if I'd been on the internet to find out more about the condition! I'd never been one for tinkering around the net, especially to learn of my fate but I typed in 'Scleroderma' all the same. A list of headings came up on my screen, one being ISN. I spent the entire afternoon browsing the site, then I joined. It was the year 2000.
I began to write posts, read all about the condition and spent more time on line than ever before. Then one day I was going through the list of members and their stories, when I came across a name I knew very well. "No, it can't be" I thought but I continued to read on. I was sure, it was my American penfriend.
I nervously typed out an email and pressed 'send' with an apology for my contact, just in case it wasn't him. The weeks went by and I checked my mail box daily but there was no reply. I put it down to contacting the wrong person and thought it would have been too good to be true anyhow.
I arrived home from a particular taxing day at work. I'd been so busy that I'd never been near the computer for days. That night, however, I needed to do some accounting so I switched it on. My mail box alerted me that I had email, probably spam I thought. I looked in amazement as a name I once knew came up. It began with, "I can't believe it." It was my penfriend! I was so excited, my fingers couldn't type fast enough and I returned a reply with my disbelief that Scleroderma had affected both our lives in some way or another. He wrote back quickly and began to tell me the story of his girlfriend who had died with Scleroderma and that's why he wrote the story on the ISN website. He couldn't believe the coincidence and neither could I. How can it be that such a rare condition had touched his life twice.
We still write occasionally to each other and if it had'nt been for ISN we would never have found each other again after 20 years. If that's not a coincidence then show me one better.
Scleroderma tears your life apart but it can also bring old friends back together even if it's only through pen and paper.
A visit to the Optician made me realise just how much I need spectacles. It wasn't quite like "Read the top line of letters on the wall", more like "Can you see the wall, dear?"
I read A, O, T, X. Then stuck my neck out as far as it would stretch, screwed up my eyes and then recited letters that were never on the board to begin with. "Mmmm, you do indeed need spectacles" said my Optician who's age is about 90 and still has 20, 20, vision. It may be no surprise to learn that his name is Mr Young.
I've been going to the same place since I was five years old. I was amazed that he continues to remember me, although he did scorn me for not keeping regular appointments, it was 1992 since my last visit! I could hear my husband and daughter outside the room. Hubby was talking on the mobile to someone about goats, and I was straining to hear how many he was agreeing to buy, at the same time Mr Young was dropping various lenses into a binocular type contraption that I was wearing on my face.
"Is that any better" he asked! I just kept saying "Yes" not realising how many different one's he'd tried in there. I heard my hubby say "Well, I'll take them all."
By now I was worried and not listening to Mr Young who had just gone through the entire range of lenses and was moving on to double glazed, when I finally said "That's okay, I can see, it's a miracle." He asked me how I'd made my way into town today and I wondered if he meant, how I'd got there at all. Are my eyes really so bad? In fact, he was asking a general question and I pointed to the door. "My hubby and daughter are outside and I came with them".
He smiled and then inquired about my health noting that I was connected to a rucksack with my enteral feeding in it. Of course, I didn't go through my entire history since 1992. We'd have been there till he retired or drew his last eternal breath but I gave him enough to go on with.
I came out with a prescription and imediately challenged my hubby about the conversation I overheard. "Don't worry there's only 3 and one is a kid."
I was called to another room full of spectacles and my daughter got very excited. I began to try on numerous pairs and none of them really suited me but I settled for a humble pair almost frameless so they don't look too obvious. My daughter loved all the designer pairs and as a result, decided to arrange an eye test appointment for herself. I can't believe she actually wants spectacles. She's never had an eye test except when she was younger and she had almost perfect vision. Anyway, I couldn't see any reason why she shouldn't have another test just in case.
My spectacles will take one week to make, then I'll join the realms of forty somethings with eyewear. I reckon it's a sign of getting old. What next, false teeth! I already colour my hair. Saggy arms, bingo wings as my daughter calls them, everything going south.
Not much to look forward to, getting old but y'know what! if I make it, it'll be a personal acheivement for me.
A visit from the local building regulations officer had us ripping down the kitchen and re-arranging every corner of the house. What for?, you might ask. Well I
have a solid fuel cooker, AGA, and the flue system was in the wrong place according to building regulations. The problem was if we moved it where it was supposed to be, it would be coming up through the stairs. The only logical place after that was on another wall with the flue coming through the bathroom and out the roof. You have no idea the trouble this has caused! I now have a kitchen smaller than before,or so it appears, and a husband so whacked he doesn't know what day it is. My daughter pulled her face and disappeared at the very sight of work and went back to the tin can (trailer) to save her nails.
The last thing I needed was a major setback like this. I have family coming over for the December holidays. All 10, perhaps 12 of them, and all they'll be sitting on is cupboard carcasses at this rate. My Aunt complains at everything, she'll be in her element with this situation. The way it's going, all they'll get is a ham salad,
turkey if they're lucky. And there's me thinking I could show off my new home this year, what a disaster!
On a lighter note, we did have a few holidays to Greece in the summer. The only summer I saw. We've been flooded out more often than not this year and it
would have been more suitable for us to build a boat, never mind a house. But then again, knowing our luck it would have sunk long before now.
One thing I have to be grateful for is the freedom I have this year. Freedom from being an inpatient at the hospital where I spent much of the last two years. The
very mention of hospital gives me goosebumps and shivers. I sure ain't going back there no time soon!
By now you've probably guessed that we're building a house--well renovating actually. It all began 4 years ago when we inherited the family farm. The mere
mention of this to people has them mentally visualising a picturesque scene of cows in the field, chickens in the yard and a quaint old English cottage with a
backdrop of rolling hills. Oh no! Not at all. The farm has been neglected, run down and overgrown for the best part of 10 years when my parents and two
uncles lived here. The farm has been in the family for over 100 years and I had some very sweet childhood memories of cows in the field, chickens in
the yard ...... you get the idea! My grandparents grew greenhouses full of tomatoes, cucumber, grapes and flowers. I spent many missing hours and many
tummy aches due to sitting in the greenhouse scoffing grapes and tomatoes in handfuls, then emerge with the biggest bunch of flowers for my mum. My
grandfather was so irate one day, that he chased me up the field, fell in a cowpat and gave up the chase after he realised that his 50 years seniority were no
match for my six year old youth. Later I was to help with haymaking age thirteen. I drove the tractor whilst my uncles loaded up the trailer with bales of hay. I thought I was the greatest driver in the world until I tipped the whole lot over after being too confident on a bend.
The summers were much longer then, or is that just my age! July and August was hot and September was Autumn. October and November wet cold and
blustery. Now we hardly know what season we're in. The whole weather has gone crazy. I mean tornadoes in Lancashire! Give me a break.
We lived in the Farmhouse and cottage, both of them built in 1660. I know that because there is a stone slab right over the doorway saying so. W.W 1660 I
never knew what the W.W stood for until a local farmer told me that his farm also had the same initials engraved in stone over his doorway too. They are the initials of the builder he told me, so I guess, mystery solved. The years took toll on the properties. After my grandparents died, my uncles and parents lost interest and the farm deteriorated. The houses were so old that rot set in the old beams, small repair jobs became huge projects and before anyone realised it, the whole place was derelict. My uncles died one after the other in a strange kind of way,like they just gave up. My parents became too old to care, and the house was plunging further and further into a point of no return. They left four years ago for an apartment which is small but warm and well managed. They often remark that it was the best thing they ever did. The best thing that I could have ever done was walk away and carry on with my life, being married with one child and living in a decent house in town. That's just me though, headfirst and into trouble. So we sold our home, moved into a trailer and began to rebuild the farm I once loved.
If I turn back the clock, I can see how far we've come in the last four years when all we seemed to do was demolish and rebuild. When I think of all the hours
we spent just cleaning bricks and drying out oak beams, it makes me wonder. The bricks had to be graded, which were suitable to put back and those which
were not. I pulled out numerous bricks with paw prints in them and someone's finger print, they were all handmade. The beams all had the carpenters mark
engraved into the wood, and I could smell cow dung in the walls of wattle and daub. We've painstakingly returned it to it's former glory with some modern
materials as well, and the second stage will begin next year which is another huge project and one I'm dreading undertaking.
If I had a penny for ever time I heard the phrase "It will all be worth it in the end" I'd be almost a millionaire. As it happens I never will be. This place swallows
up cash before it's earned and it's way above budget already. Mmmm will it be all worth it in the end! Only time will tell but I'll let you know when we get there.
They usually say, the older you get, the wiser! I would like to put that to the test in a laboratory since my Dad seems to defy all odds.
He's 78, or is he 79! Who knows? He doesn't and neither do I. He lost his birth certificate along with his driving licence when I was a kid and now he doesn't even know what year he got married, except of course there's me and by doing a rough calculation I make it 47yrs 2 weeks. My mum has slight dementia but is very silent with it. She's never been a great conversationalist. Partly I think, to not being able to get a word in between me and my Dad who never shut up, you may have already realised that from my posts.
I had 50 million messages on my phone the other day, well okay, 20 million! All from my Dad. He's bought himself a camcorder, don't ask why, he ain't got a computer or the slightest idea how to work the ###### thing. He just keeps saying it goes on the telly, TV to you and me! Never mind the inadequacy of being able to use it, he didn't know where the batteries went, you know you're on a loser then.
My Mum just sits there taking it all in, smiling until she has a cramp in her cheeks waiting for my Dad to put her on the telly, as he says. What a situation, he'll never make photographer of the year at this rate!
I'm taking time out this morning. I have a delivery of radiators for my central heating arriving but they never come when it's convenient do they! All they said was, it would be between 8am and 5pm, who are they kidding! You watch 4.55 they'll be offloading after me sitting around all day keeping the geese up the field and the dog locked up. I've gone through 2 loaves of bread already and it's only 9am! And then there's the phone call, it's my Dad. " What time are you coming over. I need some mini tapes for my machine" He means his camcorder. And on top of all this, we have an appointment with a teacher from my daughter's school at 3pm concerning her mathematics. She's just like me in that department. Adding up, taking away and Algebra, what in the **** do you need Algebra for!
I managed fine with a calculator when I ran my own business, and I got through doing three monthly VAT returns, not to mention the Tax, National insurance and the staff's weekly salary. I keep telling her not to worry but my hubby is a genius in the field of Maths and thinks that she should be the same. She's not! Ask him to set the video and he's clueless and common sense he has none, so what's the use of being numeric if you can't set a video to watch your favourite soap!
Anyway, that's my day pretty much mapped out. Wait for delivery, get tapes for my Dad's camcorder, appointment at the school, go to my parents for a lesson in the use of photographic equipment and finally make evening dinner. I'd rather be at work. Y'know, somehow life was easier then, at least I had a set menu.
Gee I feel so bored today, I wish something good would occur
There's nothing on the TV and no juicy gossip to share
Oh, I'm not a gossip mind you, I just like a little chat
I like to talk about nothing but a bit of this and that!
I used to be so busy and time just seemed to fly
But now I'm busy watching, time just passing by
I have a daily list of jobs, I'm like a robot programmed to clean
And no matter how I do it, it's still the same routine
I need to break this system and go and do some work
And when I mentioned it to hubby, he simply went berserk
How can you hold down any job, you wouldn't last the day!
You'd cause so much damage, you'd owe them a week's pay
I knew that he was right of course, I'm permanently dropping the dinner
And keeping warm with layers of clothes, that hang off me coz I'm thinner
You'd be a liability, the office jerk, the ice woman, the freak
And you'd look a proper idiot wrapped up just like a geek
So much for my confidence, sclero takes that away from you too
I used to run my own business with so much work to get through
I used to employ several people, I had so much on my plate
The Tax, Insurance and VAT were jobs I used to hate
I used to be respected, a businesswoman with zest
I made it in a man's world and always came out best
I stood my ground with management, protected all my staff
Had fun with all my workers, oh how we used to laugh
Then one day like a bolt from the blue, I was struck down with this curse
I never thought life could be so bad, in fact it was much worse
I had to give up my business and my world changed from that point on
And everything I worked for suddenly vanished and it was gone
I spent so long in hospital I nearly had to pay them monthly rent
And flowers, cards and medicine couldn't replace the life that went
So ask me if I'm feeling down or if I feel my life will end
The answer is no way, not I, I won't lie down my friend
Coz what's the use of worrying it never put's things right
You have to take each day at a time prepare yourself to fight
And yes, I know how hard it is to face each coming day
Not much to look forward to, and not much else to say
The lack of understanding is sometimes hard to take
No proper diagnosis for each and every ache
The doctor who shakes his head coz he don't really know
And makes you feel a nuisance each time you have to go
I hope they eventually find a cure then we'd all be well together
And not worry about the clothes we wear to face the bitter weather
We'd eat the thing's we dare not try, live our lives to the extreme
And be the life and soul again, how distant that life may seem
So hang on in there please keep strong and keep an open mind
One day in the distant future a cure they may find
And I'll go back to my business and go about my life
But just for now I'm happy just being a mum and wife
You see, I'm not boring and I shouldn't feel so blue
Coz although I lost my business, I still have all of you!
The saying "It could only happen to me" describes my situation very well. The older I get, the more it happens, or is it just me! Who knows. But someone, somewhere is having a laugh spiritually.
Yesterday was just one of those days! If it could go wrong, it would, if I could get it wrong I could, you get the picture!
I picked my daughter up from school as usual. There'd been a few mishaps during the day, far too many to mention. Firstly, I'd forgot to wash my daughter's pants, boy! I was in trouble. Tonight is my support meeting and my daughter enjoys going with me, it's more like a night out with the girls than a group of sickly folk. Anyway I got the usual " You never do anything for me" and a face like thunder to match. Don't get me wrong, she's a great kid, honestly, so loving, gentle, kind, what more can I say except she's a teenager. Well we arrived home and as I pulled up to the gate I saw the next door neighbour coming down the hill. Now when I say next door, I mean kind of next door because she's way down the lane from me but on the next farm. We've known these people all our lives since we all kept our farms through the generations. This lady is genetically challenged in the nicest possible way. I'm not a tall person by any means, at 5ft 1.5 I nearly qualify for a festive elf but my neighbour is much smaller than me, in fact I can see right over her head quite clearly. So now you're wondering why I'm being so descriptive of this lady. Well, she breeds Great Dane's, does very well at Crufts I believe. When you see her walking down a hill with those two dogs on either side, you wonder who is taking who for a walk! A little head bobbing up and down and two great hounds trotting side by side. She called to me as I opened the gate and it was only courtesy for me to wait and have a chat. She remarked on how well I looked compared to last year and asked about the house and general stuff, then she hung her head and told me of a tragedy in the family. I expressed my deepest sympathy as she began to tell me about it. "Yes" she said " It happened two weeks ago. Our Elise, dreadful it was, she was the eldest you know! She was in the field looking over the gate when suddenly her legs went from beneath her, it was very quick, she didn't suffer" I was very, very sad. " Are you okay" I asked offering my condolences and my help if she needed it. " Oh yes, I'm over it now, she lived a long life, nothing ever ailed her". I asked what caused her death. "Heart attack" she frowned. " Oh I am so very sorry" remembering that her own mother had died with a bad heart. " She's at peace now" I said, trying to comfort her dithering lip " If there's anything I can do, or"... Then she stopped me. " Are you thinking it was one of the family! I froze, my mind went blank, a little voice was saying, "who were we talking about, I thought it was her sister" I smiled and said "Er who were you referring to" She looked puzzled and said. " Elise, my dog" My daughter, who'd been listening intensly to the conversation, burst out laughing and ran up the drive. " I thought it was one of the family, I mean human family" She in turn began to laugh. " How long have you known us, 40 years!, have you ever known me to have a sister Elise" I shook my head and apologized for being stupid but said I was sorry all the same, for the dog that is! I was simply dying to laugh but I was too embarrassed.
So you see, I'm just totally scatty. In the space of one day I managed to get just the simple things wrong.
I'm resting today. I can't cope with all this excitement, it's just too much. I keep getting myself into trouble without looking for it. Such is life!
My husband's bright idea came from hating to mow the lawn
He'd ponder on it for hours and then decide to do it next morn
Of course that morning never came and it was always another day
He never intended doing it, the long grass was there to stay.
Then one day he was thinking, a rare thing for me to note
That if he used his head a little bit he was sure to get a goat
Now, no one told my hubby that goats can be awful mean
And that they stink like an old pole cat who's smell can turn you green
So decision made and off he went to buy himself a Billy
Came home with one behind him on a rope he looked so silly
My how that goat pushed me, I had it's horns up my back all the way
I think it kinda likes me and the farmer took no pay
He seemed pretty relieved to see the back of it somehow
I think it's settling in quite nice, it's in the orchard now
What! I shouted with some distress, me apples it will take
What ever made you want a ###### goat for goodness sake
It was eating all the apples, the fence and wire too
My hubby was getting frantic and didn't know what to do
Oh ****, it's got the washing line and it's eating all me socks
The prop, the pegs and all the clothes and even the old mail box
He ran to tether up the goat and coaxed it with some bread
But as he walked ever closer the goat lowered it's head
It's eyes were red as thunder, steam came out it's nose
It set off with a mighty charge and poor old hubby froze
He dropped his rope and ran so fast his feet hardly touching the floor
And catapulted inside the house as the goat rammed into the door
I don't think it likes to be tied up I could tell that from it's action
I think if it had caught you up you'd have been 6 weeks in traction
Whatever made you get a goat all you had to do was ask
I would have helped you mow the lawn. It's not such a daunting task
But hubby thought it better to let an animal eat for free
And now he's peering out the door, that old goat is tupping the tree
I think he's a little mad, and perhaps it's a big mistake
My backside feels a little raw and both my cheeks ache
We spent the day at the window occasionally giving a yell
It ate my best conifer and all the flowers as well
The telephone wire and gatepost, the Gnome that belonged to mother
It was going in at one end and coming out the other
It was bleating, and chewing everything in sight
And didn't stop it's feasting until the day came night
You'll have to take it back I scorned at my stupid spouse
If it carries on tomorrow he'll eat us and the house
He finally agreed to return it, though to catch it was a feat
I'll get up early tomorrow and my worst enemy I'll meet
I'll creep on up behind it and casually slip on the rope
And return it to the farmer before it gets settled here I hope
So morning came and off he went with little time to spare
Behind a bush he tip toed and saw it resting there
He gently stretched the collar for it's neck to follow through
But that old goat was cunning he knew just what to do
He turned upon my hubby then through the air he flew
He must have lifted 6 ft high and he screamed with every butt
He ran towards the shed at speed then behind him the door he shut
That goat stayed there for most of the day and my hubby wouldn't come out
I'll stay in here forever if that goats still wandering about
But I had other ideas and I phoned the farmer to plead
It's not just eating our long grass, but any kind of feed
I won't have a place to live and with that the farmer laughed
I knew he wouldn't keep it, your hubby seemed so daft
A goat isn't just a lawnmower it needs love and care
But how can you love an animal when near it you cannot dare
I'll come around right away and take old Billy back
You have to treat him nicely there is a cetain knack
I've never felt so grateful I shouted over to the shed
It's okay you can come out soon as away the farmer led
I'm sure that goat winked at me with as much as to say
I did the job for you just see as he went on his way
My hubby popped his head out and looked to see if clear
Then routed about the cabin, "What are you doing dear"
I'm getting out the mower, and I'm going to mow the lawn
And that was the last I saw of him until the following dawn
That goat now gone, and good riddance said my hubby to it
Then screamed as he sat on the chair "Oh it hurts when I sit"
No more bright ideas then, I asked with a smirk
And no more trying to get out of a little bit of work
He smiled and admitted that he was wrong for once it's true
It was the worst mistake I ever made to name but just a few
The moral of the story is, never shirk out of a chore
Or I'll be sending Billy round to play his game once more.
Anyone who knows me and I mean personally, will know that I am totally scatty. I always have been and having a chronic disorder gives me no excuse to either blame my scattiness upon that, nor to pardon my actions due to age or circumstance.
I go head first into everything, never first thinking what the outcome may be. Take yesterday for instance. I visit my parents almost every day. They live in an old folks apartment within a complex, nearby. Every Thursday is craft day and this week the topic was creating festive cards. My Dad asked me to join them, so that's just me again, in there head first.
I arrived early just to spend some time with my parents before going into a room full of elderly people and a huge mound of card material and paper all scattered around a huge table. I remarked to my Dad, rather discreetly, that it looked like we were
bout to have a Seance, I could imagine screaming 'Is anybody there!" Anyway I placed myself next to a lovely lady of 90, my Mum to my right. My Dad sat himself next to the tutor, Oh yes, he was having first bite of the cherry. We began by introducing
each other. I was looked upon as the baby since I was the only one there under 70, except the tutor and the warden who are probably the same age as me. Out came a pile of pre-prepared cards for us all to wonder at. There were lots of "Ooohs and Arrrr"
and "Mmms and Ohhhs" I just said, "they're very nice" as I passed each one around the table. Then I did something I promised myself I wouldn't, I opened my big mouth and asked if the tutor had ever been to the wholesale department that I use in Manchester.
Then began a long conversation about all the things they sell, what you could buy and what you have to do to join. Well! don't ask me how but, I've ended up volunteering myself to take a car full of golden oldies, a tutor and a warden to Manchester.
On top of that I now have two more guests, age 85 and 90, on December 25th for dinner, My husband will kill me when he finds out!
We all began a conversation which was far more interesting than making cards, in fact by the end of the session we'd made a grand total of one! and that was made by the tutor as a demo. The warden ceremoniously announced that although the craft morning
was basically a disaster, we'd had fun just the same and everyone is biting the bit for next week. At this rate, the tutor may as well bring one piece of card, some sticky tape and a bit of glue for all the cards she'll be making next time. So she may as
well save the bother of loading her car up with boxes of the stuff, in fact if she just arrived with nothing it wouldn't matter for all the work we'd be getting through. And as for me well, another one of these craft mornings will see everyone coming to
dinner, I already had ten, now twelve, who knows how many may end up coming. If we don't get this house finished. we'll all be in the tin can ( Trailer ) and somehow I don't think it will be ideal.
So now I have the daunting task of explaining my goodwill offer to my hubby, Somehow I don't think he'll be as accommodating as me and he certainly won't be in favour. Did I mention that I also offered to show them how to ice a cake! Oh well, I did!
ll slip that into conversation when my hubby has calmed down a bit.
I think the morning on the whole went well. Okay we never managed to make a card but the topics of discussion that were being made were far more interesting. I never knew the old one's still had it in em! Made me blush I can tell you, and to think my own parents did that! Memories of childhood scorns for doing just the same came flooding back and I finally realized that parents can be hypocrites, Oh yes, that much I learned, So I'm going to be very careful in my criticism towards my daughter for in the future it may come back to haunt.!
Next installment......... next week!
I'm perhaps a little scatty, some say that's my age, oh yes
Some say that I am witty and never in a stress
I do the most incredible things, get everything mostly wrong
Like trying on a pair of shorts that look more like a thong
I drop so many items, my cupboard is almost bare
And when I go out for a meal, people often stare
I might have a mid life crisis, who knows who cares anyway!
And I will have one more trial to get me through today.
The sun is shining and out comes the skimpy wear
But not for me, oh no, for those I dare not wear
I'm happy in my hat and scarf, and gloves all to match
With not so much of a hot flush, nor bare skin not a patch
I look a proper idiot, the high school geek no doubt
And friends all seem to wonder why I want to go out.
I'd opt for a coffee or just a cup of hot tea
Whilst they all drink their beer right in front of me
They laugh and make merry and seem to think it's bliss
And try to make me jealous over the good time that I miss
But I can have a giggle no matter what I drink
I'll have another cup of tea, and a coffee next I think
So who am I and what makes me different, I guess my skin is firmer
The doctor told me years ago that I have scleroderma
Sclero - what! my friends all say, We've never heard of that
Is that what makes you sit around in your gloves, scarf and hat
Or is it that what makes you younger, we envy your complexion
We'd love to look like that too, Can you give us the infection!
And why are you always ill when a cold is all you get!
You're such a funny person, the strangest one we've met
With fingers that do funny tricks and you don't drink or smoke
And if we go out for a meal at the menu you will poke
I can't eat this, I can't that, why! what will it do!
You say that it will stick in your throat and set just like glue
You're always at the doctors I bet you have your own seat
And sit beside the heater absorbing all the heat
What does the general practitioner think of you, are they tired of your trials!
I think your doctor must have a desk full of your files
No room in his cupboard you have a shelf of your own
What do you find to talk about if all you do is moan!
But I never say how bad I feel it would be worse if it were they
I'm sure they'd be much worse than me in every single way.
And who are they to mock me I was once normal not ill not I
I was just your average person who'd give anything a try
I was first to arrange a girls' night out, the first to go to the bar
The first to jump on the dance floor, first to drive a car
First one to go up the aisle, and first to have a child
I guess my teenage years took toll I was kinda wild
So now I'm in my middle years and memories are in my mind
And so called friends are very few and very hard to find
Who wants a friend who's never well or looks different from the rest
And wears thick clothing all year round and jeans and hats for best
And what's the use of restaurants they're places I do not go
They don't give you a discount for eating very slow
They hover round the table like vultures stalking prey
And wonder if you're going to finish the meal in front of you today
Are you very fussy ma'am or don't you like the food!
I can tell they're getting anxious, I think they're very rude
And when we finally leave for home I ask for my hat and coat
Dressed up like a sailor upon the Atlantic on a boat
Yes, I'm a funny person but in a humorous sort of way
For that is all I have to offer, not much else to say
Except I have a wonderful life, a good family and home
And I don't feel isolated don't even feel alone
This disease has gotten hold of me, but it chose the wrong guy
And I won't lie down defeated and watch my life go by
I'll live my life a day at time, and fight it till the end
And the person who is dear to me I shall call them friend
It's not pity I need, and I'd like you to know
That if there is a party I'd be the first to go.
So who is this person I talk about, I bet you're wondering who!
Well, it's the person reading this poem now, my friend -- it's you!
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
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 Â£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!
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.
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!
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!
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
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.
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.
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..
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.
Well now I know how to post, there's no stopping me! I won't say it was easy, there were times I wanted to give up, and I think that myself and Shelley clogged up cyberspace with our constant emails to and fro.
So here I am, square eyed, sore finger tipped and numb bottom. I'd like to say wide eyed and legless but since I no longer drink alchohol, and hardly ever sleep, never mind the rhyme I wrote I was just kidding, I can't boast being either.
My sole task for today has to be housework since I neglected that chore somewhat over the past two or three days, and my computer is giving off a plasticky smell due to constant usage.
Today began with the usual paraphanalia such as the postman's arrival. It's a case of who gets to him first, the geese, dog or me, no prizes for guessing who wins! We only get mail on certain days now, that's because the regular postie has this thing going with the dog, no one else dare take such liberties. He's yet to conquer the geese though and somehow I don't think that's possible. The dog has tried to make friends many times, but the geese are a law unto themselves, and if you ain't got a beak and webbed feet, you ain't in their gang.
My hubby has yet another whim. Winemaking this time, well at least it's not bringing home any more dangerous animals. He wants me to make it so he can drink it, who's the fool here! I gave up the old tipple two years ago but not for the want of trying. I have endulged a couple of times only to curl up with pain and wish I'd never gone there. I guess I'm commited to an achohol free life, how many more pleasures can a woman give up, I can think of another but I won't go there, I've only just got on the blog, being booted off at this delicate stage would be too embarassing, and speaking of embarassment, how embarassing is a clinic appointment. Prodded here and there, asked to reveal the most personal questions, watched by new interns and those wanting to learn, about me! I ask you, would they be interested if I was normal! Nope not in me. I'm just a living text book, not a person, and do I complain!......... I'll leave that one up to you!
I long to go back to Greece, somehow my life is better there. No more raynauds attacks, wooly jumpers or aches and pains, they should prescribe Greece on the National Health Service, probably cost a whole lot less than the mountain of drugs I get through each year. Scleroderma costs both in health and money and that's something to think about.
I'll go and do my thinking and since writing this has got me out of a little housework for an hour, the reason won't wash with my hubby who already thinks I'm lazy.
Time for real work and perhaps a glance at the TV. I think "Monk" is on this afternoon, and I need a little smile.
Let's set up a new venture, said Shelley Ensz one day
We'll make a place to air our views, where we can have our say
So they enlisted me and others to write upon the board
Perhaps a little blog or two, the anticipation soared
So away they worked in the background amidst the sweat and the toil
They tweeked at every little switch, and the keyboards they did oil
They perfected every link and click, and then invited me to join
They said it would be easy, just as easy as flipping a coin
So in I went with a head full of junk and silly poetic rhyme
But it wouldn't let me join the gang it revoked me every time
I changed my name to Barbara, my real name not my tag
And played around with every key, my confidence began to sag
Still I wasn't accepted, and as my frustration grew
I went to open the cupboard it was the only thing to do
I poured myself a little drink and then another after that
My head full of jolly robbins so at the computer I went and sat
I couldn't find the cursor, the keys all looked double to me
And I couldn't log myself in, the words I could not see
So Shelley e mailed me a message and marked them for a jerk
Technology and I do not mix, and the site I could not work
My animals were going hungry and my family reported me lost
I spent so much time at the computer, my marriage it nearly cost
I deleted so much jargon then found myself confused!
I don't think Shelley was happy and I was not amused
For every time I used my mouse the computer began to groan
And by this time I was so ###### drunk and frozen to the bone
My fingers were in spasm, my Raynauds out full bloom
And I was getting hypothermia just sitting in the room
And still I was in wilderness whilst others already there
And by this time I was merry and I didn't really care
I grabbed myself the bottle and the last drop I did sup
Then slumped back upon my chair about to give it up
I'd done everything possible to post a ###### blog
But all I kept getting was a blank brain fog
I'd never been so clever in fact I flunked at school
And always played the idiot, the prankster and the fool
I wished I'd learned to listen then perhaps I'd be a boff
Instead of being a blogger who couldn't pull it off
And so the story went on and on, for days it would seem
My mentors were all waiting for me to join their team
But I was just too ###### drunk I forgot that I was a member
I'd used so many alias's my own name I couldn't remember
Well finally I got there, don't ask coz I don't know how!
I guess you already knew that or you wouldn't be reading this now
So thanks to all the moderators for their guidance and anticipation
And for allowing me to post this rhyme with some exageration
I wish that this new venture will be as successful as the board
And I won't have to get drunk no more, the gin I can't afford.
Well! I have scleroderma -- Sclero what! I heard you say
Oh something very nasty a greek word by the way
I'll give this vein another try, I won't be beaten y'know
I sigh "why not" just have another go.
No! theres nothing there, are you sure you live and breathe
Well! I think I need some of your blood before I up and leave
I'll get someone more specialised, someone who never fails
She's quite a formidable person who has no time for males
The rustle of the curtain told me that she was here
In came this huge brash person -- "Is it you I need my dear!
I've heard so much about you, the woman with no veins"
Why do I feel so worried as they passed over the reins
This woman hovering round me who'd left her last one on the floor
Was about to have a go at me, I was looking for the door.
"Now C'mon love" she said as though I'd jump up and run
And then boasted about her victims as if she was having fun
My last one was a policeman a big strong kind of guy
Screamed out loud for all to hear as if he was going to die
I had another this morning, said that he was the "man"
When I got my needle out he jumped up and ran
My arm outstretched, her hand grabbed mine I really wasn't getting away
This woman they'd got from the crimean war was getting my blood today
Out came this tiny needle and a dish full of viles
I wasn't sitting comfortably and it wasn't due to my piles
She scanned my arm with x ray vision, then began to rub away
That little blighter I think is there had better come out to play
In went the needle for the umpteenth time in succesion
And out came the blood, slow but a steady progression
"There you are dear" She exclaimed with a certain joy
"This is what makes us women, and men a mere boy"
"Did you say you had scleroderma, to do with skin I believe is true
I heard you tell the other nurse so I already knew
Y'see you're never too old to learn my dear and that's what makes me good
So whenever you need to come again ask me to take your blood.
The moral of this poem is never judge a book by it's cover
I want that lady every time I'd never have another