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  • barefut

    Just for Today

    By barefut

    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
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  • barefut

    My Scleroderma Diagnosis Story

    By barefut

    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
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Snowmen Or Snowgirl

I thought we were in for a record year of having no snow and not much ice. The temperatures have been very unseasonal, I suppose rather worryingly, global warming seems more like a reality rather than fiction. I've never known a winter like it, I've actually been known to venture outdoors with just a jumper and no jacket such as never been witnessed in January before. Here we are in February -- here is the snow! Weird though it may seem, we live in the far north west of England quite close

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Getting Through A Party

As far as weekends go, this one was hectic! It was my daughter's 16th birthday and of course she wanted a small party. She had only her closest buddies and we invited several of our friends. I was stuck in the kitchen for pretty much the duration making Hors Dourves or ' horses doofers' as my hubby calls them. She made her own cake which I thought was quite impressive for a first attempt and the feedback was good too! There was a real sense of homeyness as the fire jumped high up the chimney

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Hurting Head To Toe

I'm hurting from head to toe and a little bit in between And I'm feeling very sorry for myself, life can be so mean My teeth are hurting and keeping me awake, my hemorrhoids in full bloom Try going to the toilet when everyone's left the room It really makes me wonder how I ever go at all I never eat a morsel my appetite's so small And yet I produce a parcel, not easy by any means I wish I could get stuffed on fiber filled baked beans!   I went along to the dentist -- Dick Turpin wore a

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The Importance Of Support Groups

My grandmother always said, when making conversation one's private life should never be hung out like dirty linen on the clothes line for all to see! Her point was always taken and I was raised to keep all my problems behind closed doors. It's therefore most unlike me to have become someone who actually enjoys sharing my pitfalls in life with complete strangers and new friends. I'm talking about support groups. Who would have ever thought it.... me of all people, Yep! I hang all my smalls on

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Just Can't Sleep!

Our first night's slumber in our almost new home turned out to be the most disappointing action we've taken this year so far. We longed for a lovely bed, new linen and our own space instead of in a tin can. We went to bed early and the room was warm -- bed inviting, hot water bottle under arm, bed socks and a tummy full of warm milk. We each let out a moan of comfort as we slipped between the sheets, then silence! An owl hooted in the distance, the hot water bottle made a rippling water nois

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Rag Doll

All I ever seem to do is wait! My life is one endless waiting room, let me explain. To my family,I am wife, mum, daughter and niece! I was a business woman. employer, independent, confident and self motivated in a male dominated environment. Now I'm nothing more than a stay at home mum. I'm skivvy to my mum and dad -- not that I mind and every other Tuesday I take my aunt out for the day as she's in a residential home. Today I have a quest, like every other day in fact. I'm taking a tr

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Risk Of Being A Moaner

I can relax now if only for a short time! I had my endoscopy -- un-sedated but thankfully all over in a matter of 15 minutes or so. Thankfully too that he found nothing to alarm him although it would have been to my horror if he had. I kind of like my GI, he's young and quite funny! I get along just fine with him and he's not one bit snooty quite unlike some doctors I come across. I was waiting patiently beforehand in a room full of other patients when I began making conversation with a lad

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No. 1 Member Of Memberships

The more I write, the more I seem to be volunteering for. Don't get me wrong -- I love it! I'm a member of PINNT, an organisation in the UK which supports people on artificial nutrition. The word PINNT simply stands for Patients on Intravenous and Nasogastric Nutritional Treatments and Yep! that's me. I found the organisation in a little pack I received from the hospital and duly contacted them for information -- I do like to know I'm not on my own, I think you get the picture! They liked my

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Big Day For Me

Well tomorrow is the day! What day? I hear you say. Well, the one where I reluctantly travel to the hospital for what I can only describe as torturous to say the least --- call me chicken, I don't mind! I'm talking about the dreaded endoscope. There's not much I can't say I've had done to me over the past few years and although it takes very little time, it still has to be my most least favourite test of all. The trouble is they can't sedate me and shoving what resembles a garden hose down

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Wild Goose Chase

I would imagine that most people would spend their Saturday mornings either tucked up in bed or doing something more pleasurable than trudging muddy fields with a stroppy teenager and hubby on a mission and a father-in-law with angina, searching for geese! My Saturday began just as that. The neighboring farm paid us an overdue visit to say that the gander had been terrorizing his mother in the kitchen -- I knew which one of the bunch that was -- he loves his piece of bread in the morning! Th

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The Incredible Hulk

My life unfortunately seems to revolve around hospital waiting rooms and five minute meaningless appointments which have you whirling around a system which doesn't work. I mean, Who am I? I'm not the sharpest knife in the drawer nor am I the smartest person on the block but, please! I'm not stupid. I sat in a hospital room with my daughter, it was her appointment, one she has waited for after a series of mess ups over the last 4 months. In this room there were people of all ages, sex and nati

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Looking Ahead

I was asked recently how I remain so cheerful! Fact is, I hadn't realised I was until now. Life goes on, doesn't it? And if you live in the past or dwell on what could have been, then you'll never move forward. I'd like to involve myself with more projects and I guess that's my New Year's resolution although I never intended to make one. I can't vow to lose weight, take on a fitness programme or return to work, though that would be my dearest wish. I guess my life has changed in so many ways

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New Year --- New Me?

Continuing into 2007 without any New Year resolutions, I guess one year merely carries on to the next. Scleroderma aside and all the problems along with it, I wonder what life has in store for me in the following months. One thing is for certain, 2006 wasn't all that bad. It wasn't a vintage year nor was it anything to archive as a memorable era, but at least I got through it without the dreaded hospital stays. Finally in a house, albeit unfinished, and enjoying a huge amount of space to loun

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Wierd Festive Cheer

To say that I've been quite busy over the festive period is probably the understatement of 2006. I'd forgotten how much hard work was involved planning a family get together and a consequent huge dinner to end the day -- I was simply out of practice and unprepared! They base TV programmes on home makeovers and celebrity chefs. I did the best of making a shell of a home a place fit to hold a banquet and I must say no one noticed the hard work, good or bad, and I guess it was all worth it in th

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What A Week Dec 18

My diary has been so full ---- I hardly know where to begin! We got the carpet down after a marathon 24 hour session. It was pouring with rain outside, freezing cold, windy and fairly miserable. The carpet fitters commented about the mud outside and I stood hands on hips making sure they didn't get past me with muddy boots. Anyhow, after four hours it was all over and what once looked like a house on a building site, now looks like a home..... on a building site! The geese are still reluc

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8th/9th Dec

Had a week of non stop work in the house. The carpet arrives in less than 4 days and I still haven't got a ceiling in the front room. The stairs were hard work, I felt like I was in a silent movie, what a par larva! They were heavy and unbalanced and holding them aloft whilst my hubby drove in the bolts, was far too much for me. I was in a very uncompromising position at one point, not knowing which way to go. In the end my hubby rammed a pair of step ladders under the whole thing and that hel

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Insomnia

The clock is ticking and I cringe at every chime I can't catch my sleep at this moment in time I went to bed coz I was sleepy and really needed the rest I'd been having a "one of those days" and didn't feel my best My shoulder ached, my neck and lower back too Going to bed early was the only thing to do   Its 3am in the morning, I'm starting counting sheep Tossing and turning, restless but I still can't get no sleep! The covers on the floor and I pick them up again I can't close my wea

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Dec 7th

Y'know the saying, if it can go wrong it will! I'll have that inscription on my headstone for sure, or "I told you I was ill!" That was of course a famous quote from one of our finest comedians, Spike Milligan! My phone line has been off yet again. The storms brought havoc and my poor line has so many joints in it now it looks like a broken licorice stick! Of course my internet service was disrupted too, so for the last couple of days I've been twiddling my thumbs. It's only 6 more days befo

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Dec 3rd/4th

Gee! What a busy weekend and so blustery weather-wise. It felt as though a typhoon had hit the trailer -- we were certainly rocking and rolling! It's not right though, the weather I mean. 8 degrees this morning-- that's about 44 degrees to you and me. I've never got the hang of metric somehow, I prefer the good old system, Fahrenheit, Pounds, inches, etc., instead of Celsius, Grams and Centimeters. Europe, in it's vision of a united state, huh, it will never happen. We're still an island an

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Dec 2nd

Well!. Turkey's ordered. I made a calculated guess this year going for a modest size bird instead of the Emu I normally buy. I thought it would be a good idea to put pork with the turkey instead of a mountain of the stuff on the plate and since the people coming to dinner don't eat much anyway, I reckon there will be more than enough as usual. My hubby had a sulk when the mention of money came into the equation, questioning me in the shop as to whether we need all the paraphernalia of accessor

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December Diary

1st December.   We've got 24 days 5 hours and counting. The Turkey not ordered, the shopping not done, the family in high expectation, am I in trouble -- You Betcha! The house is standing still, work has stopped-- guess why? We began to put in the stairs then catastrophe struck! The ceilings are not high enough to take the rise as tested by myself with a very sore head afterwards. The events to follow are that we need to take out some of the floor upstairs to accommodate the steps. Now I'm

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Past Times

I visit my parents regularly, every day in fact. They live in what we call sheltered accommodation for the elderly. It's a great little place. The heating, electricity, rates and rent are all taken care of by just a minimum payment each week. The cold winter months can be deadly for the old and infirm, but I'm pretty much satisfied that my parents at least will be nice, warm, and taken care of during that spell. We sit in the apartment and talk about all the things we did in days gone by. T

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My Life

I love reminiscing, I have many happy memories to share Like when I met my hubby, in a pub with all my friends there He was kind of popular, I was just shy and coy We were such an odd couple, he was just a boy My friends all dared me to speak to him and make the very first move But I was slowly diminishing, my bravery I had none to prove So I stood on my lonesome and looked around the room Just waiting to be whisked away or face my pending doom Then a solitary figure stood right beside m

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