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 a break from fighting. It's exhausting. Physically, mentally and emotionally exhausting. So today I surrendered and just sat in my recliner all day, staring at the walls, napping, and staring at the walls some more.
It's called depression. I take medication for it but it's still always there, lurking in the shadows, waiting for a chance to jump out and take over mind and body, leaving me in a near catatonic state. I become one with the chair upon which I sit. A piece of furniture. At least for today. Because like depression, optimism and hope are always there too. Lurking in the shadows, waiting for their chance to jump out and strangle depression. At least for a day.
Probably the hardest thing I've had to do in fighting scleroderma, is fight the depression that goes with it. To tell yourself, in your darkest hour, that tomorrow is another day and you won't feel like this forever, takes faith. And my faith comes in knowing that I've been here before and I've survived. Time and time again, I've survived days of despair. And I remember what optimism and hope feel like. Even though they seem so far away right now.
Tomorrow is another day. But for today, I let scleroderma, and depression, win. Because sometimes we need a break from fighting. And it's okay to surrender - to rest your body, mind and spirit - until optimism and hope come out of the shadows to help you fight - and win again.
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