Saturday, 24 September 2016

Daytime TV and Cobwebs

Time is very strange at the moment.  In some ways it feels like it is moving very slowly, but also I blink and another day has gone by.  Making the decision to take a break from professional life was relatively easy.  I simply do not have the energy to provide the service my clients deserve.  I will be honest and admit that I do not have a return date planned.  I will know when the time is right.

I could describe myself as housebound, as I cannot drive, hubby is too busy to take me anywhere (and I have not felt well enough to go out anyway) and we live miles from the nearest bus route.  However, I am outside at least 3 times per day - sorting out the animals and walking Buzz the dog - so I know I am lucky.  Things could be a lot worse.

dairy farm in Pembrokeshire, Wales, UK.  Green field with grass and hedgerows.

I am on Day 9 of withdrawal from codeine.  I am tentatively saying that the worst of the symptoms have passed.  I have managed to sit at my computer for a couple of hours this morning (sorting through emails, unsubscribing from newsletters and cancelling any regular payments that are not totally essential), and now back on again as the rain storm rapidly approaches Pembrokeshire.  Taking a break from doing readings is enabling me to take the time I need to properly rest and eventually to spend more time doing things that make my heart sing (crafting, gardening ...).  However, my income is reduced and there is very little spare money once the regular bills are paid.  I could really do with winning the Lottery!

One of the reasons why I am back at my computer is that the daytime tv on a Saturday is rubbish!  I really got into the routine of watching the programmes during the week.  That is something I have not done for years.  For the first couple of days I felt the usual guilt for not being busy, but soon realised that rest is essential.  I now put my feet up whenever the essential chores are done, which brings me onto the second part of this post title.

Cobwebs - we have had some sunny days this week and this really highlights the result of my lack of energy and sickness etc.  Cobwebs are everywhere.  I managed to remove them from our dining room yesterday ready for a meeting - but the rest of the house will have to wait for a day when I can walk around with the big fluffy duster.  I love housework and home management, and always kept up with the cleaning by doing the essentials each day and then at least one extra task.  We have a big house and really I need to be spending several hours per day to keep it at the level I want.  For the past couple of weeks I have been doing very little and the dust/cobwebs etc are building up.  This is a side effect of chronic illness that most people wouldn't think about.

Life changes so much when a chronic illness hits you like a sledge hammer.  My world has literally shrunk.  I used to love travelling, but now I really prefer to stay at home (car travel is painful, I get nausea and coping with the movement/noise/lights etc is difficult).  I am hopeful that I can reduce my symptoms and get stronger.  Coming off the codeine tablets is the first step in a long journey.

I hope to blog tomorrow about the latest journal I am making.  Visit me again soon if you are interested in mixed media/book making.

ETA - I find crafting and also learning new skills to be a fantastic way of distracting me from pain.  I have joined Life Book 2017 - a year long mixed media class starting on 1st January.  Click on the link to read more about it and register.  It would be great to see lots of Spoonies there.

Ali x

Wednesday, 21 September 2016

WOYWW 381 - what a week

My journal for September involves using Tyvek - and acrylic inks to 'dye' it.  I did some 'happy shopping' and bought a selection of colours, including my new favourite, Copper (I have copper in most mediums now!).  I have dyed both sides of the Tyvek (which I bought on Amazon - lots of different weights available) - just squirted random ink on and moved it around with a foam brush.  You have to work fast, as it sinks in.  Hopefully by next week I will have at least a prototype journal to show you.

My health has taken over my life even more than usual this week.  I went into a flare after having my mum to stay and driving the car too much and then I decided to finally go cold turkey and stop taking my codeine tablets.  They were less efficient in actually reducing my pain levels and I was aware that I was going into withdrawal symptoms if I didn't take them regularly.  So, last Thursday evening was my last tablet.  Withdrawal was and continues to be fairly horrible - but I am over the worst now and I am pleased to report that my pain levels are no worse generally.  Each day seems to bring another withdrawal symptom, ie sneezing one day, cough the next and then yesterday my hip flared up.  Today has seen me mostly lying on the sofa watching tv with my heated blanket - I am either freezing cold or far too hot at the moment.  I am told that I should be over the majority of the symptoms by Day 13 or 14, and I am on Day 6 at the moment.  I have only wanted a codeine fix a couple of times, but now I understand how difficult it is to be addicted to something.

My next step in a couple of weeks is to start thinking about what I can do differently to cope with my pain etc without codeine.  I am already taking some new supplements, so hopefully 2017 will be a better year for me.

Happy WOYWW to those I do not manage to visit (I only seem to have the energy to get on the computer for very limited time).

Ali x

Monday, 19 September 2016

Life Book 2017

I have always wanted to join in with the fab mixed media all-year event that is Life Book, but there were always reasons in my head for not making the time for it.  2017 is different.  I am keen to learn a lot more about mixed media, so I am waiting excitedly for 3rd October when I can register.

Click HERE to read more.

ETA - registration is now open!!  Use code FIREWORKS2017 for a 20% discount.

Wednesday, 14 September 2016

WOYWW 380 - stiff and sore, and very slow moving

I am very happy to be typing this post today.  I have had my mum staying since Saturday, so have been forced to stay out of my craft room and I am very excited about getting on with more book making/art journalling in the coming days.

My desk is still almost identical to last Wednesday, so I am going to take a photo of my new bookshelves.  I promise to have a more interesting photo next week!

If you would like to join in with the worldwide tour of crafty workspaces (or bookshelves), then jump on over to Julia's Stamping Ground.

(Ikea Raskog Trolley on left and you can just see my new metal ruler on top.  Ikea wooden drawer unit on top of my old 'bedside table' - drawers contain various items like stencils, completed cards ...  On top of that is my new set of fine-line paint pens and a sample set of acrylic paints/mediums etc, both of which I am itching to try out!  A small green basket with some small mixed media boards.  Then the bookshelves, which I put together myself - they look like they are leaning, but they are not!  All of my craft books, Tarot decks, runes, business/studying books ...)

I have described myself like an arthritic tortoise this morning, as I have been driving the car more than usual and stupidly decided to shovel some muck on the yard yesterday, so now my hip pain has flared up and I am generally suffering.  Some careful pacing of housework/animal care, taking of painkillers and a session in the hot tub later will help loosen me up.  Of course, crafting will also help!

A short post this week.  I hope that everyone is well, and that some of the UK are enjoying their late summer 'heatwave'.  In Pembrokeshire we are finally getting some sunshine today, but mainly it has been cloud/rain and my shorts are definitely in storage until next year.

Happy WOYWW.

Ali x

Wednesday, 7 September 2016

WOYWW - Happy Shopping

Morning/afternoon/whatever to all the lovely people who join in/like to be nosy like me with this world tour of crafty workspaces every Wednesday.  Join in at Stamping Ground.

My messy craft table this week shows that some crafting has taken place - and more planned for today.

The two patterned blocks of paper front left are my prototype books for the August part of the journalling/book making course that I am very happy to be taking part in.  The 4th quarter (October-December) has just opened for registration, and you can sign up for the entire year at a reduced price at any time.  See HERE for the full range of courses that the wonderful Kiala Givehand offers.

To the right is a page from a horse magazine being used to catch any stray glue and my craft mat.

Top left is the sample set of Golden paints/mediums that I just received from Jackson's Arts, plus their catalogue (lots of colour inspiration), a pack of mixed media boards to try out and the one item that I went to their website to purchase (the other items just jumped in that shopping cart!) - my smart craft apron, which will probably cover my entire body!

There is also a large bottle of PVA glue and other 'bits'.

I am jumping on here to get this typed before breakfast, as I have a busy day ahead and trying to get organised.

Happy WOYWW to all those that I do not manage to visit.

Ali x

Friday, 2 September 2016

Burning Legs and Itchy Skin - Fibromyalgia, Chronic Fatigue Syndrome - or both?

I was formally diagnosed with Fibromyalgia in 2010, but have probably had it all of my life.  Chronic Fatigue Syndrome was added to the list earlier this year.  I should be used to the constantly changing symptoms by now - and I am certainly better at coping/pacing myself so that I can make the best use of my limited energy.  However, regularly my body decides to have a 'flare' - where one or more symptoms are worse than usual, and I struggle to cope.  The only thing that time and experience has given me is that I know that this flare will pass - I just need to take any medication that will help make me more comfortable, and distract myself with activities that allow my body to rest.

Therefore, here I am, fairly early in the morning, after a very disturbed night - sitting on the sofa, watching tv and typing away on my laptop.  I feel generally very sore and stiff, which is usual for me, particularly first thing in the morning.  However, the two symptoms which have flared this time are leg pain and itchy skin.

Leg pain - they are burning; they literally feel on fire.  The pain is not eased by resting or moving around.  It is always worse lower down, and will probably spread into my feet.

Itchy skin - again, is worse lower in my legs.  This is normally just in the evenings and I wake up feeling more comfortable.  Last night though it continued and was bad enough to keep waking me up.
Both of these symptoms are very common in the Fibromyalgia community - I see them mentioned all the time on social media.  I have a very enquiring mind and wonder WHY these particular symptoms occur.  Also are they just symptoms of Fibromyalgia - or could they be part of my Chronic Fatigue Syndrome too?

Well, I have just done a Google search and burning legs is a very common symptom - but there are no real reasons given for this.  A condition called Peripheral Neuropathy is mentioned, which is often seen in Diabetes, and there are lots of different medications, particularly in America.  However, I get the message that doctors do not know why it occurs and there is no one effective treatment.  I am not willing to take medication unless it becomes a constant part of my life, so hopefully my usual daily routine of regular movement combined with rest will see it easing later on.

I have now done a Google search in relation to Chronic Fatigue Syndrome - and, yes, it is a common symptom with that too.  I have no hope!  The main difference that I noticed immediately between CFS and Fibro is that the symptoms with CFS (or ME - that should be another blog post - are CFS and ME the same or completely different?) seem to be far more severe and life-changing, and the sufferers are very descriptive in how they are feeling.  It does seem common that people will be diagnosed with both conditions.

Here is a discussion about the symptoms - Healthrising forum

Are you as confused as me yet?  Imagine actually having these very long lists of symptoms, which change constantly - and every day, with no real hope of recovery?

Now, the itchy skin - mine has eased a bit with some distraction and taking an allergy tablet when I first got up.  I wonder whether this is linked to the burning pain - is it something to do with nerves, as mentioned by a few of my doctors in the past?

My Google search this time found lots of useful information about why it may be occurring and how to treat it.  It seems that it is related to nerve problems, which makes sense to me.  Extreme Itch in Fibromyalgia and Chronic Fatigue Syndrome

(To make my suffering worse, it is also common in menopause - and I have been in perimenopause for a while, and, of course, I also have Psoriasis.  I should be used to itchy skin by now, but when it really hits it is almost unbearable.)

There you go.  A blog post with only a small amount of useful advice, but a lot of confusion.  This is part of daily life for those with Fibromyalgia and/or Chronic Fatigue Syndrome.

I would love to hear from anyone who can relate to how I am feeling this morning - leave a comment or email me at

Ali x