Polly, The Smart Phone & Blogging - Or Not As The Case May Be!

I've had such a long break from posting I'm really struggling with how to get back into it. So, without any further angst I have simply jumped back in by typing the last two sentences! Wow, that wasn't so hard, was it? (Breathes a sigh of relief...)

I must apologize to anyone out there who has clicked back to this blog every now and again to see if I've finally posted. I do that with a number of blogs that I love and have been soooooooooh very disappointed to witness the sorry state of recurring absences. I must be a glutton for punishment, given the number of times I've done exactly that. Eventually like any sane person, I will give up as no doubt some of my regular readers have done in my case.

 

Personally speaking, I blame the advent of the Galaxy SII. I've always yearned for such a luxury, even in the days when luxuries of this type were only available in futuristic sci-fi movies. So, you can imagine how chuffed I was when my cell-phone (mobile) provider contacted me and offered me my hearts desire. Best of all, it didn't cost me a red-cent! Oh yes, I jumped at the offer.

That said, I grilled the poor girl on the other end of the line. I'd only upgrade if I could get an I-phone or something similar. In the end my choice was significantly reduced to the Samsung Galaxy II, due to the fact that it would support office! Guess what I did on Christmas day? Blah, blah, blah...

Anyway, the long and short of this post is that I wish to apologize for being a crappy blogger. I kind of got distracted. It's too easy to go surfing when you've got Wi-Fi and a hand held computer to facilitate. Waaaaaaaaaaaayyyyyyyyyyyyyyyyyy toooooooooo easy! Oh yeah.

Sadly, one of the few things that isn't easy to do is blog from it. I know that countless others can do exactly that, however I can't. I find that the touch screen, even with SWYPE is just too hard on my hands to do much more than site hopping on the internet and writing the odd e-mail.

http://www.flylady.net/

Even the simple act of viewing my favourite blogs on a daily basis can become too much for my delicate little pingies. It's repetitive strain, you see?! Seriously though, that is exactly what it is; probably on account of the ridiculous number of favourite websites and blogs I like to trawl through at a time. For those of you in the know, I believe this may constitute something of a problem.

Addiction? Or not! Who's to know? One thing I can tell you is that my physician agrees that persons with Fibromyalgia tend to be more at risk of hurting themselves accidentally during the carrying out of their everyday lives. What does this have to do with posting though? Pretty much everything.

CHAOS! Can't Have Anyone Over Syndrome is deadly. It can affect everyone, particularly those who are
not Born Organisers. In my case I've always been slightly disorganised, but since being unwell things have got slightly carried away when I was hiding beneath the bedcovers feeling sorry for myself.  This is due to an overwhelming lack of storage and the over bearing excess of belongings.

My computer desk has become a place to keep my neatly folded clothing. BTW I also store my shoes beneath it and two bolts of upholstery fabric beyond that! The nice thing is that I can admire them on the rare occasion I clear my desk and give myself access to my computer screen and keyboard.

The upholstery fabric is now residing on my sofa in the sitting room, fulfilling yet more dreams! One is a lush crimson coloured velveteen and the other is similar only it's a beautiful shade of creamy yellow with cream and red stripes through it. They compliment one another nicely and are the stuff that dreams are made of. They also frustrate me no end, considering that it must be all of nine years since my trip to Material World in Athlone. Still, one day...

So, Polly's Not Sick?

Yesterday I left my diary in somebody's office by accident. I returned to retrieve it some two minutes later (enough time to walk up and down the stairs, poke my head into the office & discover that I should also have brought back an original copy of the document I'd just delivered!)

Having found a stranger in the office, which I suppose should be expected after four years absence, I had introduced myself to the lady concerned & asked if I should know her. That may sound a wee bit of an odd question, but she was obviously a part of the furniture and I felt as though I ought to have known her! In any event it turned out that she worked in the A&E Dept normally and was just holding the fort, so I had no need to have known her in the past. Phew, this means that I'm not barking mad after all!

She seems like a nice woman and when asked about my story, I divulged all my darkest secrets. You know, the ones regarding intractible pain, fatigue, memory loss, blah, blah, blah, oooh, and the fact that before I went off sick I was as cross as the proverbial bear...

So, that all went nicely. I photocopied the document and promptly forgot to take my diary with me when I returned to theatre. Nice one! My diary is my lifeline. It's got all sorts of stuff in it, including reports, reminders, my name, and all the stuff that I'm likely to forget - so a lost diary is something of a disaster!

Anyway, as I already told you, I returned to 'the office' , knocked quietly on the door and walked in. I could hear voices coming from the inner office and thought no more of it. All this meant was that I could retrieve the diary easily. Or so I thought...

"...she's the girl that's been off sick, claims to be sick when in fact there's nothing wrong with her..."

I don't know for certain, and I can't be sure, but it's one heck of a coincidence that I've recently returned to work after four years and four months sick leave. It's also a coincidence that I've had to take my employers to task to enable me to do this legally and safely. And it's also a coincidence that I met a woman I didn't know, introduced myself to her and told her about my recent experiences and then forgot my diary and walked in on this conversation. Isn't it?

Thankfully my stint as an axe-wielding psychopath with murderous tendencies is over. My menstrual cycle appears to have released me from yet another potentially catastrophic phase in my existence which is lucky for the woman whom I overheard. I ignored what I'd heard, asked for my diary, swapped an original document for the copy and thanked her sweetly - with a smile.

Later on yesterday evening I took my magic tablets early, in the hope of avoiding the need to take additional mediciations to make me sleep (no such luck). I also took pain relief because my feet and hips were particularly sore. Thankfully the pain in my chest had settled down, although it was on the left side directly above my heart I knew it would pass because I've had it before.

In fact I've had it nearly every day since 2004! It may not always be in the same place, but it's forever present. Medications, rest and adjusting my daily life have helped. But, it's still there, underneath the surface just waiting for a crack in the pharmaceutical armour.

Just for the record, my last working day before my sick leave was 1st February 2006. The symptoms became troublesome in 2004 on a particular date, in a particular place. I was given my diagnosis in February 2005. 
And I returned to work on 31st May 2010.

I'm on a rest day today. Working just 15 hours a week has resulted in my insomnia returning, pain returning, an increase in my medication, resting on my rest days - as in staying in bed for most of the day and an increase in the balance in my bank account!

Is it worth it? I don't know. It's nice to feel useful, but is it nice to be in pain and put off taking medications because it's a low grade pain and it might go away? The problem is that it doesn't. I take medication. I feel fatigued and my head is spinning. Who said I wasn't sick, eh?

Pardon? You Did What Polly?

Yesterday, I finally embarked upon my keep get-fit regime. This entailed a visit to Tog 24, the purchase of some lovely breathable garments made from bamboo/charcoal fabric, unfortunately all dark grey or black, but hey, they were on promo. So I was happy, enthused (finally) and the sun was shining.

About three or maybe four years ago I purchased a new bicycle. Purple of course. Sadly, its first outing entailed a gruelling trip to a neighbouring village which lies about four miles away. As the children were much younger then I was compelled to follow them as they cycled off into the distance with little or no thought for their tired old Mum trailing behind them. These days I'd probably hurl abuse at them and turn for home...

Anyway the long and short of the above paragraph is that was the very last time I used my brand new sparkling purple bicycle. In the meanwhile both the children have commandeered its services from time to time and it's no longer as shiny or new. Still, it's in pretty good shape, it's mine and it works.

I decided a few days ago, in my infinite wisdom that I am going to walk the Dublin Marathon for charity. So, with just over six weeks to go it really was time to make a move on 'training'. As one of the symptoms of fibromyalgia is a lack of body temperature regulation. I am not only inclined to feel the cold, but also the heat. This of course means that I always have a top layer with me, even in the heat of summer.

At one time, before my diagnosis and the onset of reliable medication which have helped with this annoying and somewhat problematic symtom my family had often laughed at my insistence on wearing thick Aran jumpers/cardigans on the hottest of days. Even now, I tend to layer up for hikes up the mountains, as temperatures can vary depending on the altitude and the terrain.

One of our Scouts once asked me why I insisted upon wearing so many layers if I get sooo hot. My reply? So that when it's cold I'm warm and when it's hot I can strip off, with the added advantage of being able to share my clothing with kids who've just got soaked during a water fight in a mountain river...

To return to the purple bicycle of yesterday evening; I had also purchased a computer which measures distance, kilometres/miles per hour, calories burned and other exciting things like that. Yesterday it was finally installed on the front fork of my bike and put to good use on its inaugural journey.

Apparently I cycled a full four kilometres around the block in just over twenty-two minutes. Admittedly I stopped to catch my breath once or twice, but otherwise I was pretty impressed with my performance. This was especially due to the fact that despite my exertions, I wasn't particulary hot or sweaty - this is a first. So, the breathable fabrics worked and so did my poor muscles! (This gear will come in handy for mountain hiking!)

What did come as a surprise was the fact that once stopped and allowed to recover from the shock of actually exercising I became wheezy. So much so that I unwrapped my standby Salamol inhaler and took a couple of puffs. And then another - thankfully the wheezing stopped.

Today, is my last day of smoking. My first day of continued exercise - not only did I do four and a half hours of strenuous ground clearance in my Mum's garden I also walked the mile to the village for her newspaper. Okay, so it's actually 6/10's of a mile, but I did walk back again and only stopped to talk to the neighbours twice. This time I was in my all cotton gardening gear and got quite hot and sticky.

Apparently, I've turned over a new leaf. I counted my points for breakfast, dinner and tea and earned a whole days points on top of that for use in a well deserved glass or two of red wine.

My only regrets are that I've become so unfit that any of this is necessary and that I couldn't get my flaming chainsaw going after it ran out of petrol - and yes, this was after the fuel tank had been refilled! Still, I probably earned another thousand calories in the process. So now I'm off to sample some more of the nice red wine...

Polly'ternative

Just every now and again, I take it into my head to do a post relating to the condition Fibromyalgia. This is something which I am all too familiar with, but am at once grateful for the opportunities it has presented me with and resentful of the problems it has caused.

During my travels, whilst investigating this annoying medical condition I encountered Alternative Anna or Silverleaf as she is known on Twitter. Either way, she has been a useful contact for someone approaching a complete change in their lifestyle and career pathways. Checking in every now and again to catch up on what she's been up to has reassured me that this unfortunate condition is indeed not a figment of my imagination rather something real!

On the days when I have no energy and my interest levels have zeroed out Anna is always a source of inspiration. Perhaps this is because like me she just gets on with it as well as she can, and when she can't, she can't! This has been well documented and like I said it has often reassured me that the feelings and the pain I endure is not psychosomatic, imaginary, or anything else but real!

Recently Anna started to put her polymer clay jewellery up for sale on her ETSY shop. This is lovely, and I would probably buy some if I hadn't started doing much the same thing myself. She is also selling the most delightful little knitted hedgehogs, the proceeds of which she is donating to hedgehog rescue charities.

My first sight of these adorable little creatures was on her blog. She had posted a tutorial, which to be honest at first sight didn't impress me terribly. This is probably why I don't knit much; apparently I lack the imagination to envisage the finished product - anyway, I continued to scroll down and found this!

Isn't it just gorgeous? Well it is if you love hedgehogs, so there! This of course could have something to do with the fact that I have a thing about hedgehogs as my photo of the Paris campsite in 2006 will show!

This little guy was our only visitor on Bastille Day and he only called in to complain that we had blocked his run with our windbreak. Thankfully we were able to appease him as he helped himself to our left-overs which had been waiting for me to tidy them up following our rushed evening meal. Sadly our guided tour around Paris and fireworks display from the Seinne took precedence over the washing up...

At this stage in the post you're probably wondering what this has to do with Fibromyalgia. Apart from the fact that our trip to France was taken before my medications had been sorted out, the fact that I was constantly in a lot of pain, suffering with chronic insomnia and surviving on five hours sleep with the aid of a table absolutely nothing!

I am thankful that this routine has since changed for the better. If I take all my medications on time and go to bed at a reasonable hour I now dream and have restorative sleep which allows me to wake at a reasonable hour feeling refreshed.

Sadly, this is not naturally induced and I often find myself in a position whereby it's not possible to stick to this routine and then suffer the consequences, which is where people like Anna come in. They remind me that I'm not okay. Anna makes me realise that I am not alone and that it is okay for someone who looks okay, like I do, to feel crappy the way I do so much of the time.

I sit and look around my home at the end of what used to be my working day and wonder what the hell I've done with my time, but reading Anna's blog reminds me that I'm not okay and it is okay for me to feel like this. Thank You!

Polly Pierce

Polly's Mind Cues

This post is a little thank you to the people who have been so kind and provided me with huge quanities of inspiration and encouragement. It is not often that you come across someone who is willing to give honest and reliable advice; but somehow I seem to have been lucky enough to have found some truly great critics...

Darina Loakman who introduced me to the concept of WHAM'ing and all the resources out there for people like me. Without her influence I certainly wouldn't be the confident blogger and website owner promoting my very own brand of handmade wedding stationary over at Vinca Cards!

Despite Fibromyalgia/ME; for several years I haven't checked myself into a nearby institution for the clinically bored and terminally insane! Thanks to the stimulation provided by the whole business of WHAM'ing, my memory is 100% better than it was a year ago and I am using my time constructively even while I am resting...

I have developed a keen interest in business from a pleasant past-time; with astounding results; having been forced to take a leave of absence from my profession as a health care worker. While my energy levels may not be what they could be; they are certainly much improved. I can do my weekly shopping with relative ease; which is largely due to a first class family doctor and an understanding consultant.




Jean, Lorna, Niamh, and so many others have put themselves out to answer my questions or send me messages on subjects that few would even show interest in. I even received a telephone call from a total stranger the other day; advising me to sort out my e-mail address as soon as possible.

All I could do was laugh the laugh of the embarrassed and agree with her - I had simply not got around to changing it to a dedicated e-mail address and let's face it; yahoo.co.uk doesn't sound as good as pollypierce@vincacards.com does it? I was thankful to her for being courageous and acting on her convictions. I just wish I'd thought about it before I re-vamped my business cards and placed my ad in the paper!

DG, the two boys and BJK have all been so supportive and patient with me. The house is a mess and unfortunately my good friends Fly Lady & The Household Helper haven't succeeded in converting me from slob to housekeeper just yet. Rome wasn't built in a day; I'm getting there and my family are right behind me...

What happens next is a mystery. I have resources and tools at my disposal to help me over the next hurdle; and an interest in business development. I hope to report back in another year that things have gone from strength to strength. This will take both time and money to achieve; but hopefully I am on the write (sic) track...

Polly Pierce
Vinca Hand Made Greeting Cards & Wedding Stationary

Internet Recovery Therapy In The Approach To Christmas

Hi there, I'm backkk!

Goodness, it seems like such a long time since I was on the blog!

The whole idea of setting up a blog was to make a little cash from selling my cards. That was of course on my other blog Vinca's-A-Thinka! over on my Freewebs site, I can't actually remember quite when I started it all off as it seems like forever, rather than the few months it has been.

Being a total novice at all this I decided that I had to start somewhere and to be honest was much more comfortable with the degree of anonymity that the web offers. Seeing as I knew very little about web development I started to play on the Microsoft Office desk top publishing program and whipped up a few very amateur ideas to be thinking about.

Unfortunately, I also discovered some lovely templates on free-web hosting sites and blog sites. This now means that I end up devoting much of my time to designing and redesigning my sites. The actual blogging is relatively easy by comparison; assuming that you can find the time to do so in the first place!

This morning I decided to take the world by storm and tackle my mail boxes; considering that between them there was the best part of five hundred e-mails this is quite a time consuming past-time. My new friend Fly-Lady is responsible for at least a quarter of them, and this is after careful deletions of testimonials galore!

Don't get me wrong now. I am not accusing Fly Lady of nagging; or anything like that, but when your back is at you and the Fibro shoulder/neck pain has resulted in the consumption of pain killers galore; talk about housework is the last thing you need. That said, some of the testimonials are truly inspiring and despite my many complaints, we are still getting there; slowly!

Getting back to my commercial website; Vinca Cards, we haven't actually sold a single card - yet! There is a very good reason for this which is that I haven't yet to put one card up for sale! Yes, I know; that does sound a little odd. However, I decided that rather than jump right in with both feet and make a load of expensive mistakes, I would suss out my market.

I used the website as an opportunity to conduct market research into what my market was all about. I included a questionnaire's and a guest book asking for comments, a members forum and a comments section at the end of each post in my blog. Unfortunately my feedback hasn't been high in numbers, ie less than a thousand returned questionnaire's. However the less formal feed back, ie comments and remarks made has been very encouraging, much of which I have already put into action.

At the moment I am thinking about re-designing the layout of my website to offer my products for sale on-line. Of course this will involve the inclusion of a lot of modern cyber tecnology and the applation of a great deal of patience & common sense on my part.

What makes this transition difficult is the fact that the whole business of inter-net trading, blogging, etc, is just so new. To people who are working crazy hours outside of the home, then commuting large distances on top there is often little chance to familiarize themselves with the inner workings of their computers, and so; there is little common sense in this area.

Luckily, I am blessed with a number of contacts who are kind enough to share the benefits of their experiences, all of it free of charge. Unfortunately there are also those who are only too happy to charge ridiculous amounts for what is slightly outdated advice; packaging it differently and peddling it as the new answer to our prayers.

With so much going on in the blogosphere, it can be difficult to manage one's time. Maybe I should take a leaf out of Fly Lady's book and set my timer in an effort to control my surfing time? There are so many great sources of inspiration out there that it can be very difficult to self regulate and be self disciplined; I have met some lovely people, who have been willing to give so much of themselves.

I wonder if The Priory; our local treatment centre for a rehabilitation of addictions deals with addiction to the internet? If so, who would be prepared to pay for my treatment? After all, while I have been so busy on the net, who has been making the money out of my card business? The quick answer is no-one; which is why over the next couple of weeks I expect to see a turn around in the structure of my VINCA Cards website.

There are a number of people that I should be thankful to, not least Darina Loakman, Angela Willis, Yarrow Stark, Lynette Chandler, Kirsty T, Alice Seba & Kelly McCausey & Rich Shefren. More recently I have found just what I needed on the craft side of things with Chewing Paper, The Worsted Witch, Amy Peters, and several others who's url's & names seem to have disappeared into the annals of Google Bookmarks; which I am unable to access at the moment!

A word of caution, be careful regarding the bookmark button on the google or firefox tool bars, they are a great idea and very easy to use; unless for some reason the server is having problems, like mine seem to be at the moment. From this day forth I proclaim that I will be using my own favourites and cataloguing each address into an appropriate file. Hmmmh, that sounds like another days work!

Christmas is just around the corner now, and still I have great intentions. We have yet to bring home a tree, all our decorations are still in the attic and the presents bought so long ago need to be wrapped! On top of this, we must find the large living room; ie the one I started to renovate two years ago; our small house is too small for five of us to live for twenty-four hours in what used to be LB's bedroom!

It's not that my plans are particularly grandiose; rather I need urgent treatment for my internetproblems; they are beginning to impact on other areas of my life, to the point that I am quite adept at hiding my efforts. Unlike the alcoholic I can't hide it under the bath or in the hot-press; and yet still I try! Now, where is that timer, again...?

Chocolate

Thanks to my cyberfriend Fly Lady; plus the fact that my Fibro-flare is slowly beginning to clear up, I am back in the mood for relocating/tidying up the house. In fact, yesterday I managed to cook up enough meat for two days meals. With one or two changes to the basics we'll have a scrummy strogannoff for four this evening; without any of the usual grief which accompanies the life-style of busy card making Taxi-Mom!


At the weekend DG & I spent a lot of our time sorting and clearing. First it was the boys' room; then ours. Having moved it all around; we now have the task of transferring the computer to the new computer desk in the corner. I dare say that I might get around to it eventually! It's hard work dragging the components around the place; not only is it heavy, ie the monitor, but it's also fiddly.



One of the advantages of all this is that once installed it would be easier to use; a proper computer desk has all the necessary accoutrement's, rather than my homemade diy jobbie at the end of the hall. Also, our room is much lighter and therefor I would be less prone to eye strain as I'll be able to tweak the final adjustments to the wiring without the use of a flashlight!



Fly Lady would be proud of me. Not only have I acquired a smart new home for my computer; I have also got tons of extra storage space for the paper, books, shredder, scanner, printer(s), files, etc. With a little more effort and we could all be that little bit tidier; especially me, and I will never again have to ransack the house for a little piece of paper again. It's a nice thought, but I am not so sure about that aspect of things, some habits are just too hard to break!



In the meantime our latest addition to the family; ie Chocolate the fluffy ball of kittenish fun, has a new playground. In order to keep the mayhem to a minimum; I announced to one and all that the poor little scrap would sleep in its bed in our bedroom. That way neither the boys nor the dogs would have the opportunity to upset him too much, or me for that matter! Seeing as he's a very well behaved little cat, he is already toilet trained and comes when his name is called; that is unless he is curled up in a ball on our bed.


The boys are simply chuffed to bits with their new friend and have even set up their Scalectric's for the first time in ages, in an effort to entertain him. Well, I'm not so sure about that one, as it's them I hear laughing their socks off, but hey! They're not doing any harm; so we'll leave them for a while, so long as they remember to pack everything away afterwards.



Since Chocolate's arrival; on Monday evening, we have had all sorts of fun and games. The girls' natural curiosity has been met with hissing and spitting, stiking out with razor sharp claws and running to hide. Gypsophillus; being a terrier is determined to seek him out. Whether this is because she wants to play; we're uncertain.



TilleyTwo is also curious. We think that this is probably her maternal nature coming out; she has already managed to smother a couple of escapee hamsters and a field mouse while licking them quite literally to death! Unfortunately she's not so keep on Chocolate's annoying habit of swiping at her nose...

I'm off to the washing line and then I'm going to think about another 27 boogie-fling!

Polly Px

I am sitting in a lethargic haze at my PC, feeling most peculiar due to a nasty flare up of Fibro pain. This time it is my right neck, shoulder and part of my chest wall, oh..., it is also radiating down my right arm. So much so that it has affected the strength and muscle tone of that arm and the pain awakens me at night as I am unable to relieve the pain by altering my position.

I embarked on yet another diet this morning; pills, pills and yet more pills! Oh..., I am not at all a happy bunny today. I am pretty well sedated by the coctail of pain relief I am taking at regular intervals throughout the day. It includes quantities of Solpadol (Codeine & Paracetamol), Zydol (which isn't narcotic, despite behaving like one), Lyrica (an anti-epilepsy drug which is somehow great for nerve pain), Prozac (which is good for nerve pain), and Amitriptylene (a potentially addictive tri-cyclic antidepressant which is very effective in terms of pain relief and relief of insomnia), and don't forget Cataflam (non-steroidal anti-inflamatory). My goodness; what a mouthful - figuratively and literally!

Recently a psychologist; whom I am attending at the request of my Rheumatologist, told me "that Fibromyalgia was related to how (I) am feeling." He made it clear that he didn't wish to get into an argument about this statement. My mood is far more likely to be affected by the pain, & it's debilitating effects, that I experience everyday of my life! I am very much inclined to tell the lovely, lovely French gentleman where to SHOVE it!

The previous week the same man told me that he didn't believe my memory had been sufficiently impaired as to be problematic. Indeed, he can't see any problem with it at all! The fact that BB's friends are convinced that I have Alzheimer's Disease is obviously irrelevant; as is the fact that BJK keeps reminding me of missed appointments and conversations that haven't taken place. Go figure...!

Despite the huge handful of hope (aka medication); the pain remains, though the senses have gone! I don't enjoy the sensation; being out of my tree isn't a giggly high, or a mellow "Hey man...!" It is a sluggish & lethargic heavy fatigue; it interfers with my comprehension and concentration. Heaven knows; on the best of days my concentration levels are variable; the BRAIN FOG that accompanies the Fibromyalgia takes care of that! No, I definately do not like being under the influence; especially as I am still in pain and contemplating my next dose of confusion.

I remember being told; during my student days, that clock watching was a sure sign of pending narcotic addiction. My Family Doctor was concerned about my regular use of codeine based pain relief; believing ME to be in danger of addiction.

I now know that clock watching probably has more to do with pain than addiction. If I were addicted I would be self-medicating a little too frequently; instead I prefer to go by the clock, I am only too aware of the horrible effects of drug addictions. After all; I have nursed many addicts during my nursing career!

Rather than trust my ability to self regulate my Family Doctor prescribed tri-cyclic antidepressants, which have proved successful in the treatment of Fibro pain. Unfortunately, during an intense flare-up Amitriptylene is insufficient and I have to resort to codeine anyway!

As I sit staring intensely at words on the monitor, my right arm is clutched tightly to my body; an effort to restrict movement of the shoulder, while the rest of my body is happily floating off somewhere towards the rear of the house! It's a shame my mind isn't quite so happy. And NO! There is no chance of me becoming addicted or abusing my pain killers 'cos it's horrid...

My rant today is soley motivated by the fact that I AM suffering a flare up of a condition called FIBROMYALGIA. It is NOT, I repeat NOT a psychosomatic disorder and frankly, considering the debilitating effect of the pain and the drugs I am taking in an effort to control it; I resent the implication implicit in " (my) feelings affect the way (my) body feels."

To many doctor's FIBROMYALGIA/ME/CHRONIC FATIGUE SYNDROME is little more than an exclusion diagnosis. An exclusion diagnosis means that IT is only diagnosed in the absence of abnormal test results to exclude anything else. Outside of the medical fraternity Fibromyalgia is a little known condition.

To make matters worse; Fibro sufferer's look normal. We look pretty healthy. Our families & friends don't realise that we often can't join in; it's not that we don't want to! The condition gives very few hints to those on the outside and we are often accused of being lazy or disinterested; or depressed.

Were I suffering from depression and let's face it; EVERYONE has bad days, it would almost certainly have a lot to do with the fact that little sympathy is forthcoming & the medical fraternity is clearly divided in its view of what is to many a very REAL and FRUSTRATING condition.

I might be medicated with psychotropic drugs (ie happy drugs) and anti-epilepsy drugs, but I am NOT under the care of a psychiatrist, never have been and certainly Do Not intend to be! Nor do I have epilepsy or indeed depression...!

So, let me ask you a question; if I were to borrow my mother's Mink Coat, would that make me a mink? I think not!

My Wish for ME

After my rather long winded ramble yesterday I thought I'd keep it short today. Please click on the link above (in the title) to view a blog by an on-line friend of mine; Celfyddydau. It is very short & sweet; definately succinct and really explains all of what I was saying about ME/FIBROMYALGIA/CFS yesterday.

The reason it is referred to as a SECRET is because we might look okay on the outside, but we are anything but on the inside. When people can't see an affliction they can be very cruel and apply labels; lazy being one of the most popular ones!

I promised to keep this one short and sweet, so I am off now! Please leave any comments on both my blog and Celfyddydau's blog as I am convinced that this photo will make a difference; if only it were part of an awareness campaign.

Thanks for looking,

Px Polly Peirce

Blog, blog, blog

Hi there!

You know;when I started blogging I had a number of reasons in mind;

1. principally because I make (hand-crafted) greeting cards by hand; using a variety of techniques and welcome the chance to show them off;
2. secondly because it gives me a chance to indulge another passion of mine, which is writing,
3. I love photography and have really only started to be able to do what I have always longed to do, which is to take good photo's on a good camera. There's no point in having them if they don't get shown off from time to time!

The problem is that not everyone shares the same interests. This means that to some I am considered to be an eccentric; while to others I am considered to be quite normal.

I actually don't like the word normal because it infers that anything which lies outside of its parameters is abnormal. I personally consider that a better choice of wording is average.

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In terms of treating patients I cannot recall the many thousands of times when I have been asked "is it normal, nurse?" Most often they are enquiring about their pulse rate, temperature or their blood pressure. On the surface that is an easy question to answer; a simple yes or no would suffice; but, would it?

I have always considered that it is best to be truthful, while protecting the patient from startling facts which might upset them. It is a difficult question to answer, considering that there is no such thing as 'normal'!

Almost always I will answer, somewhat evasively, that it is what one would expect given their age, circumstances, etc., or that it is within expected parameters.

First of all I do not wish to be the person who eroneously informs the patient that in fact everything is not as it should be, or the person to tell the patient that everything is normal when in fact it isn't.

For most people the answers that I choose to give; when asked this question, is more than satisfactory. Only a very few want to know the intimate details of how their bodies fit into the parametres described as normal or anticipated.

I do not believe in telling lies, at least not intentionally. From time to time, like most people I might tell the occasional un-truth, generally due to misunderstanding or misinformation.

Unless I am having a bit of a laugh and playing a trick on someone I do not tell lies, it is not how I was raised and anyway, I can't do so for toffee! When there has been an element of deceit involved in some such plot; I will always apologize and offer an explaination myself to the recipient afterwards. I am normally forgiven quite readily.

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So far, the story to date is that I am a forty-something trained nurse; working in a specialised unit in an HSE Hospital, Somewhere in the Midlands. Due to ill-health I am taking a break to concentrate on the more important things in life, like my health and my family.

As an interest I started to make greeting cards and have been doing so for the past year. I have progressed so quickly in terms of skill and knowledge and am now able to sell my cards, for a reasonable cost.

During this time I have indulged my second passion which is photography. Since BJK gifted me a Canon Powershot digital camera have been enjoying including the occasional photo in my range of cards.

What I have discovered about myself is that while indulging my creativity my mental acuity has improved dramatically. I have good days and bad days, like most people; except my bad days really are bad days.

If I am short of sleep I suffer what can only be described as brain fog; a common complaint amongst the ME/Fibromyalgia/CFS community. On a good day, when I have remembered to take all my meds on time I feel like a million dollars. There is no consistency in my condition and I plan my life accordingly.

At last I am beginning to pace myself. In the past if I was a bit slow after a weekend off, it was probably due to copious amounts of alcohol and very little sleep for three days. Nowadays a glass or two of wine or not taking my tablets till late will have the same effect. If I forget to take my tablets I am doubled with pain, sometimes severe and other times so slight that I feel a bit like a junkie as I take my codeine; nothing else is effective.

I can no longer mash potatoes, so we have them boiled in their jackets. The skins carry the nutrients anyway. DG or BB will mash if they are around. My beloved Le Creuset Saucepan set is too heavy for me to lift without pain. Everyone knows not to get in the way if I am wielding it; from pillar to post and God help anyone that gets in the way as once in motion I cannot stop lest I drop it and its contents.

At other times my joints are so sore that I find it difficult to press down upon my rubber stamps, sometimes I have to do this while standing above the surface; generally my chair.

Sometimes I cannot stand up, either my back will not straighten itself out or I have pains in my legs or feet; sciatica just finishes me off. None of which is ideal for a busy nurse, in a busy unit...
I can no longer lie on my right hand side in bed and if I lay on my left DG snores into my ear and keeps me awake. I don't sleep well on my back and people with ME/Fibromyalgia/CFS are not supposed to sleep on their stomachs. My legs seize and ache if I lie in a foetal position and my left hip goes into spasm for days on end.

My arms, elbows and wrists ache and keep me awake if I curl them up toward me. My sleep is non-restorative and leaves me feeling like I have been run over by a steam roller. It used to be a lot worse.

If I take my tablets on time and in the right doses I do get some relief, and then I think I am Superwoman. I look around at the devastation around me and try not to feel guilty.

I tell myself that I am doing my best and that in anycase it doesn't really matter. The housework will still be here when the boys have left home, in a few years time. Anyway, Quentin Crisp declared that "after the first four years you don't notice the dust!"

I notice the difference and despite the family being supportive and wonderfully patient; it does appear that it is me, 'The Mammy' who is expected to make the difference.

After my huge energy expenditure at the weekend (during the five mile hike) it's important that I take it 'handy' this week; allowing myself the opportunity to recoup. If I don't I will end up putting myself back into a place I do not want to be in.

I don't find the need to justify myself, I understand my condition and the effect that it has had on me. http:Unfortunately people on the outside looking in are unable to see what I see. Apart from the fact that the black pits around my eyes are a thing of the past and the fact that I have put on a couple of stone in weight; I look just the same as ever.

My five mile hike was probably easier on my aching body than traipsing around the National Ploughing Championship showground. At least my body was moving at a reasonable and constant pace for most of the time, instead of dawdling along very slowly and still for extended periods of time while looking at exhibits and waiting for other people to turn up. My body isn't able for that kind of abuse and painkillers were taken as a matter of urgency.

Maybe because I had consumed the pain-killers in advance of the hike,I was able to survive it. On the up-hill climb I had been ready to call it a day more than once; my thighs' on fire; pelvis creaking & groaning, lungs gasping for breath as I heaved my aching body higher & higher up the mountainside. Our guides were very kind and slowed the pace to allow me to catch up. I've been catching up ever since...

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I hate the way my body has been behaving and resent that my being able to do something normal is such a challenge for me. I am proud of my achievements, however, and am determined that nothing is going to stop me from making a success of this part of my life; not even my own lack of confidence!

ME/Fibromyalgia is a chronic pain condition with chronic fatigue. It changes lives for the worst in many cases and just occasionally it can change things for the better.

Before this thing really got its grips into me I barely saw my family, I was always at work or on call. On my days off I was so tired that I lacked the energy to talk. I was prone to outbursts of temper and simply didn't have the reserves to change things. I was over-tired and under-weight,in chronic pain, stressed out and not myself.

Now that my body has decided to make this stop I am a different person altogether. I love my family and most of the time enjoy spending time with them. I have two dogs, a rat, a cat and a ferret; only the cat was possible before - they're more self sufficient.

My boys most certainly would not be participating in things like the scouts and gymnastics and the teachers in the school wouldn't even know my face. I would be better off financially though.

I used to dream of the day when I could afford to go job sharing. That day would never come, as I knew that I would never be able to afford to do it. It's just as well that we none of us know what the future holds, isn't it?

By the way I forgot to mention that the fourth reason for my blog is that I can let off steam! The only problem is that I didn't think it would take up so much of my time...


Luv Polly Px