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 can honestly say that being home all day has it's good and bad points like anything else. First there's the boredom especially since I worked for a living for 27 years, was seriously ill for 4 years and gave up my business. I started work when I was 15 and if you work that one out you'll now know my age -- 46!
So in the last 4 years, two of which I was in hospital. I've now been home 2 years or 22 months 11 days --- How this is messing with my brain!
I've been trying new ways to motivat
I've got on my little green wellies, my gloves, hat and spade
I'm going in the garden to the veggie patch I've made
I've never been greenfingered more like blue to be exact
The colour of my raynauds when it does it's unique act
I've never been a gardener, I should with the land I've got
But I've never had a thrill out of watching cow dung rot
I was born into farming but never took interest
Rather go out with the boys, I liked that the best
It's such a terrible pity I never listened we
I don't know but there's something about having all the family home and then waving them off to school and work that makes me sigh with relief. It's not the prospect of daytime TV, nor the loneliness, it's the fact that all the time is to myself and I don't have any pressure to do anything. I guess it's the lazy attitude I've developed since becoming sick. Take this weekend for instance! We decided, or rather my hubby decided, to make a vegetable patch in our lawn. Okay, so practically thin
My first radio show will be aired on the 27th April and if I say that I'm nervous it would be a massive understatement.
My theme is upon healthy eating --- Dish of the Day! And for my first dish I plan to talk about a soup which will be made with ingredients purchased from our local market. I suppose I have to start with something simple and I only have around 15 minutes to deliver my recipe.
I think I might give out the recipe for Stilton and Leek soup -- one of my favourite soups when I was
Well, I've made it through winter -- no mean feat you might say! But that's how you come to judge life with scleroderma -- another year, another challenge, another episode.
Life is just too short, so cramming as much into it as possible seems the logical thing to do. My brain works rather like my computer these days -- too much information and Wham! it crashes then shuts down for eons. That's me all over except I still function physically if not mentally. With my raynauds in remission for a f
First day of spring and yet another year has passed. I have so much to look forward to, namely the completion of this ###### house which has dominated our lives since my husband's mad cap idea to rebuild a cottage that never had so much as a lick of paint since 1660. True it was a mammoth task, and we sure have made hard work of the whole thing -- I swear if I hear my daughter say "I hate living here" one more time, I'll up and leave myself.
The onset of spring has me dreaming of long summer
Global warming! -----Where?. Climatic change is certainly happening but my views on the cause are very controversial. I'm a complete skeptic and don't believe what I'm being told. Sure we burn too much fossil fuels and we're all guilty of littering the planet -- there's just too many humans per square mile and too much technology. But my theory is this: I think global warming will happen anyway with or without our help. The dinosaurs would still be with us if nothing had changed although the
It seems like only yesterday that I led my 3 year old daughter by the hand and into a room full of screaming rugrats and hyperventilating nursery assistants. The whole morning as I remember was upsetting and traumatic, not for my daughter... for me! She just let go of my grip and headed for the doll house in the corner with not so much as a sniffle. Me on the other hand, walked home with a lump stuck in my throat ready to burst at any moment and as soon as I got through my front door, I let go.
I'm almost up and running again, well up anyway! My nose continues to run and I have a nasty great cold sore right underneath my left nostril -- I'm sure in the old days I'd have been labeled a candidate for the Black Death, didn't they paint a huge X above the door? Anyway since my house needs a lick of paint, as long as they continue all round with it I have no worries.
The cough is still troublesome -- I hear my hubby moan and turn quickly over in bed when I go into spasm, like Yeah! I can
One thing for sure about being ill, you have time to think! Not that I am a great thinker -- I go straight in feet first and no thought about anything, always willing to volunteer my services whatever the project.
I couldn't find anything remotely humorous lying in bed staring at the ceiling and counting the flaws in the plaster except perhaps the cough which produced nothing but a gurgling rattle and then a blast of wind at the other end, at least something was moving. I couldn't just lie the
You're not your normal self today whatever on earth that means
I'm normally very cheery and bouncing full of beans!
But you can have an off day, goodness knows I've had a few
But the only person commenting, my friend happens to be you!
Yes, I have a runny nose but that's normal to compare
Having scleroderma is much worse and hard to bare
I can surely rid myself of cold and fight off all those sneezes
It's the other stuff I'm battling with the king of rare diseases
Oh I start to shiver
I'm determined to dig myself out of this pity pot of a hole I've dug for myself recently. I suppose we all get down in the dumps at times and I'm no exception- --Yeah! some folk may look at me and think, "There's nothing wrong with her" and in my little world there isn't. So how come some days feel so depressing?
I have much to look back on over the last 3 years and although I don't like to dwell on the past the emotion takes over at times.
I was writing on the message board, in fact it was
Yikes! What am I doing this mad hormonal twit!
I did a stint on the radio for Raynauds, did my bit
And then I went and mentioned that it was my desire
To be a roving reporter and available for hire
I could be the next correspondent or even make TV
But now I'm ahead of myself, little adventurous me
Oh did I mention I have sclero, but the station didn't care
And that makes me feel special to be of some use there
I really worry about children and how they eat then relax
I don't think th
I don't need no doctor to tell me how dizzy I am--in fact, I'm probably the queen of stupidity. I can't blame sclero, oh no! I've always been that way--- fact is sclero has slowed me down enough to think and my episodes of pure gormlessness are much fewer these days. However, when those moments arrive I do it grand style!
Saturday was a busy day. I don't remember many days not being so, but last Saturday was a bit more hectic than normal.
We were invited to a 21st birthday party, nothing un
There are certain things that make me cringe, things that make me annoyed and things that make me seethe! I am a relatively tolerant person even though my hormones may be in decline but I draw the line with the NHS!
My six monthly rheumatologist appointment is nearing. I know I have the appointment, it's in a safe place. Last night around 7.30, I received a phone call from a female version of Stephen Hawkins, in other words a robotic voice! It said. If...your..name ..is .. Bar..bara .. Lowe
Yikes! I'm like a little robot whizzing here and there
I forget just where I'm going until I'm finally there
My daughter's dress is waiting at the store for me to get
And I'm rushing to the car in case the thing gets wet
Mum! Please get my prom dress I've only got till July
And at the rate the time is going, the days will surely fly
My little girl's a lady, sixteen and leaving school
And everything is either being stressed out or cool
Mum! I need some nice new shoes to go with my atti
Back to normality -- whatever that is? I've had some good feedback on my little stint on the radio, if only from my friends who were listening!
All in all it's been a pretty average week, nothing with any substance to report. The usual stuff of nearing appointments and the wonder if anything new will emerge -- like, yeah they got a cure! -- dream on...... I know beforehand what I'm up against, a lengthy wait in a crowded room, people coming and going with slips of paper -- one department th
The last minute nerves kicked in and I began to wonder why on earth did I put myself forward for such a feat. I am of course talking about my day at the radio station.
I started the day with doubt as I heard that the presenter was unavailable due to illness. Fortunately the station rang me to clarify the situation well in advance by informing me they'd arranged for a stand in DJ to conduct the interview -- The nerves began again just when I thought I'd gotten away with it, Drat!
I arrived far
I'm feeling kind of low today I didn't sleep a wink
I cannot function properly or have the power to think
I'm doing such stupid things coz my mind is all a blur
This scleroderma thing I have, is more for me to incur
Not only am I changing, my life is weird just coz
I'm 46 and starting my natural menaupause
I'm generally the type of person who always feels the chill
And if the whole family are sweating Y'know I never will
My layers of heavy clothing whilst others wear skimpy gear
Rushing round the house, scraps of paper in my hand
Finding bit's of info wrapped up in a rubber band
I'm going on the radio -- what ever will I wear
I could sit and have the interview with nothing on -- bare!
For no one will ever see me except the presenter and the mike
What a horrible dream I'm having the thought never the like
I'll put on my best trousers or perhaps a little dress
I'm going to highlight Raynauds not going to impress
I have my little speech in hand, things I have to
I was browsing through some of our old photographs when I came across a packet containing some really old snaps of myself and hubby, boyfriend as he was then, on vacation in Rhodes. My daughter let out a shriek as I passed her one of my then favourite pictures of her dad. He was leaning against a rowing boat in long shorts, flip flop sandals, sporting a truly 1980s hairstyle with an earring. "That's never my dad"? she yelled but it was. " Who is that in the peach dress -- don't say it's you
When I retired from work through illness, I thought that my life would change in that the rat race only ran around me and I not around in it! Memories of the past two and a half years are by no means sweet and I'm at pain to remember just how bad things got -- did I really go through so much? Here I am down the line and I should be enjoying relaxation and peaceful days - not so!
Living on a farm has visions of fairytale proportions " Ooh aren't you lucky" some say imagining me in boots, twee
The snow never came and to say I'm a bit relieved is probably an understatement. I was, like all kids in my day, excited when the stuff fell and couldn't wait to get home from school and get out my sled. Looking back, and if I'm honest, I think I may have had the beginnings of what was to come! My fingers, toes and lips used to ache beyond the pain barrier when I returned indoors and my gran used to ward me from the fire exclaiming, "You'll get chilblains -- come away" But when you're a kid