I'm tired. So tired. Tired of nausea, of living in the bathroom, of pain, of this dreary weather. Tired of being tired. Tired of scleroderma.
Today I gave up. I let scleroderma win. And it felt good. Sometimes I just don't have any fight in me. Some warrior I am. I don't even have the energy to be angry. And you know what? I don't care. At least for today, I don't care.
Sometimes we need a break and we never get one from Scleroderma but at least we can give ourselves
Not long after my first son was born I started having a lot of unexplained muscle pain and fatigue. The year was 1997. Soon, my hair started falling out - by the hand fulls. Not in clumps but overall thinning, at an alarming rate. I went to a dermatologist and he said that since I was nursing it was probably a lack of vitamin K. So I took vitamin K.
I was having lower back pain and since I had been diagnosed with a bulging disc from a work related injury when I was 5 months pregnant, I w
I did a spot of reminiscing last night, not of the good old day's, no sir not at all, more like the bad day's. I'm referring to just a couple of years ago when my life was so much different then.
The summer photographs fell out of the cupboard as I was looking for something else. I sat down with them on my lap and looked through every single one of them. The first packet contained all the pictures from Crete in early July, our first trip of the year. I looked pale, thin and like someone who'
I heard that the summer is over, on the news today
I wish that spring was beginning and summer on it's way
No more sitting in the garden or wearing skimpy gear
The jumper's out of the cupboard, now the cold weather is here
The nights are slowly drawing in and the howling winds blow
I might as well just get undressed and go to bed like an Eskimo
My hot water bottle round my feet, my socks and a chocolate drink
I'll take a good book with me and under the covers I sink.
I hear a noise fr
A planned trip to Wales was fraught with bad weather and ill tempers to match.
Besides all the usual checks around the home before departing, we had the animals to sort out and the farm to secure, all this for just one night! To me it all seemed so not worth it, and I was almost having a nervous breakdown by the time I sat in the car.
We set off around lunchtime with enough baggage for a 7 night stay in Greece. My daughter squealed a cry of dissapointment as we drove past the airport on r
Another mad weekend. Am I the only person in the world with such a hectic family life? Answers on a postcard please!
My parent's have gone on holiday to Wales and my daughter's on holiday from school, are they ever at school these days? Anyway, my hubby's taken my car to work, ****! that's my freedom gone this week.
I have three Pygmy goats coming later this week, Boy! that will be fun. Firstly we have nowhere to put them, secondly I don't know how they're getting here, and on Saturday we ha
Thank goodness for the weekend, the family's all home
I'm sick of being stranded every day on my own
At least I'll have some company for a day or two
And find lots of little jobs that they can help me do
I want to choose a carpet, so off to the store in town
I had a colour in my mind, the price was knocked right down
I wanted a nice rich colour of red to match my warm decor
But my daughter wasn't that impressed and found it quite a bore
The salesman tried his level best to sell me his
Oh! I shouldn't of eaten that, I knew that from the start
This pain that burns inside my chest closest to my heart
But this isn't heartburn, it's just a common name
It's sometimes called dysphasia but it hurts all the same
I need some kind of medicine to put this fire out
But I can't find the tablets, there's none of them about
I climb high upon my pillows and gaze up at the moon
I'll stay like that for hours, it'll be the morning soon
That horrible tasting acid, that nasty bitter tas
How did you feel when you were diagnosed with scleroderma or some other connective tissue disorder?
I've heard this question so many times, on the messageboard and at my monthly support meeting. I guess we all react differently but what is common to us all is the lack of support on offer. How many times has a doctor raised his arms, shrugged his shoulders or shook his head when faced with what seems like a perfectly reasonable question?! How many times have you been faced with " What?" at
I feel like a spinning top today. My daughter's at college and caused mayhem this morning when she emptied the entire cupboard to find a plastic shopping bag, y'know the type you get from the supermarket.
Well, she wasn't having any old plastic bag, oh no, it had to be a designer bag with Nike, Goldigger, or Reebok pasted all over it. I keep a small stock of carrier bags for me to use again and they do make great household bags as well. My bit for the environment you see.
If you've ever been in a doctor's waiting room when there's a mini epidemic of colds, read on you'll know what I mean!
I sat in a corner, I always do. I'm not in the crowd of young mums any more with their snotty offspring in arms. I did plenty of that when my daughter was young. I see elderly people with handkerchiefs permanently glued to their noses and the occasional sneeze that makes everyone raise their heads from the boring DIY magazines that doctor's waiting rooms all contain for so
Oh me bones are achin, me dry eyes itchin too
I'm achin so many places. it's like having flu
Me red spots are bloomin, I look like I've got pox
I think I'm about ready for that long oak box
But, eee I'm not talkin bout that, It'll come soon as think
So I'll put on't kettle and make me'sel a drink
Outside it's bloomin rainin, n, fairly cowd as well
It's gettin toward winter me bones can alus tell
I'll be rubbin on potions and stink like th'owd pole cat
And hubby won't come near me, I'
Excuse me one moment whilst I scream and bang my head against the wall, here goes....... Arrrgh -- Ouch! That's better.
Yes, I'm having one of those days, not one of your average scleroderma days but one of those ###### days when nothing goes right.
The day began slowly as usual and then gathered speed at frightning levels. Firstly I got into a who can shout loudest match with a fellow disabled driver. I'm at best the most placid person by my own admission, at worst I'm a grouch when v
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
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 America
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 M
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 n
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 gre
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 syste
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 i
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 gre
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 to
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 com
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 thr
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 feelgoo