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
(cont. from Part 6)
Employment. I was, until 2002, a valued member of the workaholic society. I began my working life at the tender age of 15 and other than taking maternity leave when I was 30, I'd hardly ever missed day of work in those early years. It was later when my problems began. I had many bouts of illness, working through most of them - soldiering on as the saying goes! I can only ever remember two occasions of absence and that was because of salmonella and sinus surgery. I was 24.
(cont. from Part 5)
Common complaint -- I don't think so! My friends don't have it and they don't know anyone who has it either. What was that doctor thinking of, telling me it was nothing to worry about? It wasn't him suffering, I'm only 19.
Back then it was considered Barbara's party trick. My friends honestly thought I could turn my fingers white on demand. During the winter months -- I could! But you can only do it so many times before you begin to wonder what was really going on? I
(cont. from Part 4)
Vanity! What on earth is that all about? Vanity went out with my 20's and never came back. Some say it's marriage that causes it to leave -- I say it's scleroderma. You see my first Raynauds attack happened when I was just 19. It was one of those defining moments you kind of remember with such clarity. There are not many things in life that you recall as being your very first occasion, but I remember that day alright! At 19 you either live for clothes, boyfriends or life
(cont. from Part 3)
Challenges! Well, if there's ever one day without one it would be a miracle. Today, I can't bend nor straighten my finger and whilst some may think that is such a trivial matter, let me tell you that in the grand scheme of things every little fault with my being adds another chapter to this open ended book!
Of course throughout my time of suffering, and I don't want to sound self sympathising here, there have been days when I just wanted to get off the merry-go-round,
(cont. from Part 2)
Tiredness, well if there was a prize for being constantly fatigued, I'd win hands down! My day only get's going around mid-morning, speeds up a little by afternoon and then grinds to a halt around 7pm, that's when the "Yawns" begin.
To think back 6 years, and that's not a lot of elapsed time, I used to run my own business, employed several people, and kept up with the rest in a very chauvenistic world of high-flying executives. I worked within an industry of tight sched
A friend once asked me, knowing that I love to write, "Why don't you write about what it's really like living with a chronic illness?" Of course I've written so much about the disease itself, but I've never written a biographical account of my day-to-day life. I decided that if I was going to do it, it would be my own story, not about my journey to diagnosis, nor my condition in medical detail -- just my own day as seen through my own eyes, in the hopes that others may have some understanding.
(cont. from Part 1)
So, around town I go with my rucksack bobbing about on my back and it's about this stage of the game that I begin to feel like I'm carrying a lead weight around with me. My shoulders, neck and back ache, and if that wasn't enough, my fingers begin to go into spasm. Now, if you're not familiar with the condition Raynaud's, you won't appreciate that having dead fingers and toes that turn completely white, is no happy vacation! So whilst I'm cursing the pack on my ba
Things we take for granted like, a washing machine, refridgerator, cooker, tumble dryer -- er! Tumble dryer! I haven't had one of those for 5 years on account of our ever ongoing renovation work. I've sure missed that machine. Believe me, hanging out your washing to dry in weather we've experienced this year, was and is a nightmare! I mean how much can a domestic queen like me suffer? It was not right to hang washing in front of the fire particulary when you had the minister coming for coffee. M
Well, I might have been poetic about global warming but there's nothing poetic about waking up to a hard ground frost such as experienced this morning! I could hardly believe my hubby was scraping the ice off the car windscreen -- but he was!
I immediately put plans into action. My day would be spent searching for all my winter woolies and perhaps adding a few jumpers to my collection. I built the fire right up the chimney, slipped on my favourite heavy jacket and hastily headed for town. My
Global warming what, where and when will it begin?
I'm counting on my chickens for when it finally comes in
For the very thought of warmness fills me with such glad
I haven't been warm since Greece, the best warm I've ever had
I was just alright in the sunshine whilst others wilted and hit the shade
And I lounged just like a lizard, coz that's how I'm made
At night I wrapped up in clothing before we hit the bars
And all the tourists looked at me as if I'd come from Mars
For they were
I'm writing from a personal experience with the public toilets in town. Sometimes these little havens can be a very cold place, particulary if you have Rayaud's and people know nothing of the condition. I'm not blaming individuals here, but it kind of makes you aware of the lack of understanding and awareness of the condition. I have sclero too, but it presents itself with no visible scars, unlike some conditions. I don't think it's pity we're after, just an understanding that being cold is not
If my life was a soap opera I'd still find most of it hard to believe -- much more fiction rather than reality. In my last blog, I was writing about our forthcoming trip to Greece, how happy I was soon to be basking in warm sunshine. All my plans of total relaxation with some normality to my circulation, went right out of the window the minute we arrived and dropped our luggage in our hotel room.
My hubby was uncomfortable on the flight mainly due to an insect bite picked up while he was wee
There's been no end to this dreary summer -- it's almost autumn and all we've had is winter weather! No surprise then -- we're off to Greece! Tired of aching muscles, constant blue digits and persistant colds, I'm looking forward to the sun. My preparation began yesterday with a visit to the hairdresser's. My mop of straggly unkept locks were in desperate need of a makeover.
"Take it all off," I begged. Not literally, though! I watched in the mirror has she hacked chunks of half tinted and
It's Thursday and today is my regular spot on the airwaves. My hubby is quite taken aback by the response I'm getting -- he never realised he had such a famous wife! I find myself being approached in the street by people I've never met before -- "Are you Barbara?" they ask. Even somewhere as grim as a hospital waiting room I'm recognised as a person they know from somewhere! I guess I must have a good face for the radio, as the song goes! Here's a woman who reads out recipes live on air and who
I put myself in some situations, quite why I'll never know! I have a hobby that has occupied my youth to some degree and it's not your usual kind of thing, y'know, like horseriding which most girls in these parts did at that particular age.
It's not anything sporty -- is that really any surprise? So, okay -- I make cakes. I make wedding cakes, in fact any special occasion cakes, and I spent 8 years at evening classes learning the art -- if you can call it that!
My fingers are not so delicat
Oh dear. All I ever seem to do is moan. I know that myself and I'm being truthful about it. It doesn't take a wise bird to recognise the fact that I'm in danger of becoming boring. Sure in my head I'm 16, fact is I'm 31 years older than that but, Shhhh tell no one!
My daughter and I linked arms as we walked in bright sunshine -- Hang on, did I say bright sunshine? Yep! I did, seems like summer paid us a visit today although rather late. It was a comfort to walk around without a jacket, I nea
Life has handed out some cruel dishes over the past few years, none more so than bad health, if not one thing it's another. I swear I have my own personal parking space at the local hospital and before long I'll have a whole wing named after me!
My Father, who unfortunately suffers with Angina and COPD, collapsed straight after my Mum's funeral and consequently went into hospital. My role as daughter has never been as testing and I'm back visiting yet another parent. My face is so common in
I thought my worst day was the day my mum died -- the next worst is her funeral!
We're all dreading that last journey, and this blog is becoming far too sad for me to carry on with, so even at this very depressing time my mum sent us some humour to laugh and cry about at the same time!
Making arrangements at the funeral parlour was our first stop after registering her death. Believe me it was difficult to bear! We were ushered into a small room, offered cups of tea and left for a short whil
I've had many occasions on which to say, "That was the worst day of my life." I thought I'd been through them all, but none of them tops this one! My mum died yesterday and although expected and long overdue it still hurts with a degree I can't come to terms with. To say it was long overdue is not a callous remark -- she suffered greatly towards the end!
She suffered with Alzheimers but it was slow in progression. The last six weeks however she became less aware and then the realisation set
Oh this weather! It's said that the Brit's are ruled by it and I think I understand why? Every day -- rain! My only sunshine this summer will be my last trip to Greece (I'm working on my husband for another). My daughter anxiously buys new clothes in the hope of us jetting away. I'm just putting plans into action! My hubby is slowly coming round to the idea.
Another weekend and a wasted Saturday and Sunday not able to complete any work on the house or round the farm. My dining room in the o
Another week gone by and each day an episode in itself! My endless quest for medical supplies, hospital visits and my job as a dutiful daughter are taking their toll. My job as search engine for medical necessities is high on my agenda. I have a whole new collection of equipment to complement my new feeding tube but laying my hands on the stuff is like going underground to a sleazy club and doing the deal!
My need for new size syringes and newfangled tubes has caused quite a stir at my vill
A very lazy Sunday, only rising from my bed at 9am, and yes, it's raining.
We had plans today, my daughter and I, a mother and daughter thing, y'know like shopping or a wander round the seaside which isn't too far away. Instead I've lit a fire because believe me it's July and 50 degrees. The birds are singing with rain coats on and the dog is so wet it's grown flippers. I'm joking of course -- who'd believe that? But this relentless bad weather is getting everyone in the country down. We had a
Too much can happen in the space of a month --- was it really that long since we booked a vacation to Greece then swanned off? It's true that I'm pining, even yearning for the country I call second home but reality kicked in the moment I boarded that jet homeward.
So back in Blighty! -- that's knickname for Britain. The sun hasn't yet caught up with summer. It's never hit anything above 60 degrees since our return and yes!, I'm pretty fed up with grey skies and the relentless pouring rain. W