So…yeah…life eh? I’ll write more about why I’ve been gone for so long another time, for now there are more pressing matters to discuss, because it’s…

may 12th blog bomb hashtag

Fibro awareness day! Well, to be precise it’s more like invisible illness awareness day. Previously I’ve given away some free downloads: click here for the stickers, and here for the pdf’s and here for my story.

This year one of my precious chums, Sandy, sent me a link to a site that showcases artists who have invisible illnesses. They curate an online exhibition each year that goes live on awareness day and…my work was accepted 🙂 I’m particularly grateful to them for their patience, because my submission was less than timely/perfect due to how ill I’ve been this year.

I had to choose 3 pieces of artwork and there’s an interview too. Please pop over to have a look at all the amazing work produced by brave souls who are battling a chronic illness…and we’d be EVER so grateful if you could share the site too. Thanks oodles.

One of the images is a self portrait that helps to illustrate one side of an invisible illness, this other selfie is another side completely:

self portrait sandra lock

 

…being chronically ill means that your life changes. For some of us it’s a huge change, a complete end to how and where your life was lived and headed. I feel like I’ve slowly lost who I was and as the sleep deprivation etc slowly wears away at my brain function and energy and mobility I have no idea where I should be trying to get to…or how to put a positive spin on it.

Fatigue is a mood killer. It’s the nemesis of those of us who suffer from depression…

into the fire pain image

 

…and even though I KNOW that, when I’m bowed down by fatigue and all my worries and fears bombard me it’s still easy to forget how important rest and pacing are. To remember that things will get brighter. To keep in mind all the things that I have to be grateful for.

self portrait sandra lock 'dreaming'

One of the things that they attempt to drum into you on a pain management course is the importance of pacing. The Three P’s: Pacing, Pacing, Pacing! Yet if you’ve had a run of cancelled appointments and days spent unable to get out of bed and that miracle occurs; a day when you feel you’ll be able to perhaps…

wash your hair or

have a bath or

have a friend take you out for a drive

…then no matter how much your brain tries to remind you to pace yourself, your heart wants to make the most of the miracle. So you try to do more than one thing, and then payback is a complete and utter b*tch.

self care is not a luxury

 

I wish…well, I right now I’m wishing many things and most of them, frankly, aren’t related to writing about fibro! So my apologies for a somewhat lacklustre post, revisiting work rather than presenting something new. In a way though that’s a perfect illustration of a life lived with a chronic illness: you can only do your best.

Thanks for reading, and don’t forget to pay a visit to the M.E. Again artist showcase.

May your muse be with you,

sands signature


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My internal thermostat is faulty since Fibro hit, and after a life with poor circulation and being permanently cold I’m now over heated most of the time.
…and that was before I hit the hormonal roller coaster that is the menopause.
I mentioned one thing that helps in the previous post, which is Avène spring water spray. (Evian and Vichy both do one too.) in the past I’ve mostly used it to help my eyes during the hayfever season, but it’s wonderful for cooling you down when it’s hot.
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I bought mum some plate warmers as part of her birthday present earlier this year,
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…and one day when feeling utterly overcome by the heat I spotted them and wondered if the gel would freeze. It does, and having one on my lap really helps to get my body temp down.
Other friends have also recommended;
wetting and freezing a towel/flannel,
keeping a small spray bottle of water in the fridge,
Liz Earle eye bright kept in the fridge helps sore eyes too,
…anyone have any other ideas?

Thanks to Alison and Elaine for ideas 🙂


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Whenever they issue a heatwave alert and mention that the elderly and infirm are at risk, I’ve never really viewed it as appertaining to me.

Until now.

I am really and truly NOT coping with this heatwave at all. I just commented to a couple of online chums that I’d give away a decade of my life willingly if it would get me a home with air conditioning installed. I had to take Mum to hospital on tuesday and it nearly finished me off. No more driving for me until the temperature drops…or leaving the house full stop. My fatigue increases in direct correlation to the rises in temperature and I am feeling so…useless right now I could weep.

Meh.

Here’s a cold picture to soothe all my spoonie brothers and sisters.

 Winter dreams iphone art

Winter dreams…

 


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My story…

…well, a little of it.

fibro definitionAt the start of 2007 I was a special needs primary school teacher progressing steadily in my career, I had another permanent contract, was coordinating the arts throughout the whole school, running a project with special schools in Germany and Slovenia and had successfully taught abroad and done masses of travelling. Admittedly all this meant that there was too much stress at work, but that’s the teachers lot these days so you just buckle up and cope.
My immune system had finally gained strength after a bad patch that had started on my return to the UK from working in the USA, that was until the winter of 2006 when I was laid low by a couple of viral infections.
In February of 2007 I started to feel run down again, achey and like the flu was looming, my waist was sore too and when I investigated I found some small blisters…a visit to the GP confirmed my worst fears: shingles.
I’d been critically ill in my mid twenties with chicken pox so knew how badly my immune system coped with the wretched herpes zosta virus and it wasn’t until after the Easter break that I was able to return to work. On the Sunday before I went back to school on the Monday, I’d noticed how sore my ankles and knees were, I had difficulty bending, but I put this down to my increased exercise after a period of illness.
By the Wednesday morning I was finding it increasingly hard to walk. A PE lesson I led that morning was hellish because I couldn’t demonstrate anything to my pupils at all. I got an emergency appointment on the Thursday morning, came into work, told my boss, left for the doctors around 11.30am…and never returned to work again.
Ever.

It took two years until we managed to figure out a medication regime that got me walking again and managing more than 30 minutes of sleep a night.
(During this time I did a pain management program…tussled with occupational health, the union, the teachers pension people, various benefits agencies…but they’re stories told elsewhere or best put to rest.)
One day everything seems fine, the next your world crumples and you’re left learning to cope with an incurable and invisible illness that some fools in the medical community still think is psychological. Yes, there are medical professionals that don’t keep up to date with research, so this is where charities like Fibro Action are invaluable.

Surfing the Fibro hashtag on Twitter yesterday I noticed that the Fibro Duck charity had some new posters etc available, including a symptoms word search! What a great idea 🙂
I also found a helpful blog where the blogger has taken the time to collate all of the myriad of symptoms linked to fibromyalgia. As it stands, she has a PDF that lists TWO HUNDRED symptoms. Yes you read that right; 200. In Emily’s own words:

“Fibromyalgia is a syndrome with many symptoms. Each individual with Fibromyalgia will have some of the symptoms. A few people will have all of the symptoms, but not everyone with Fibro has the same symptoms or even has symptoms all of the time. Also, symptoms may vary from day to day, year to year, or even minute to minute for each person coping with Fibromyalgia and other common coexisting conditions as well.”

Yes, fibro loves company and is frequently not the only illness present. A dear friend of mine is currently battling the following along with fibro: MS, diabetes, coeliac disease and cancer of the lymph nodes.

Emily goes on to point out;
“these symptoms are not meant to diagnose! My purpose in compiling them is to help people be more aware of what people with Fibromyalgia may be dealing with at any given moment and to help people with Fibro track symptoms, so that you have as much information as possible for your doctor to help you.”

may 12th blog bomb hashtagToday is fibro awareness day, (along with ME/CFS and iirc lupus. There may be others, it’s sort of invisible pain and fatigue illnesses day…) all spoonies around the world would be massively grateful if you could take the time to read the information that the links below lead to, even if it’s only one of them.

  • Fibro Action: a charity that helps raise awareness and will help you to keep up to date with current research.
  • Fibro Duck Foundation: a humorous approach to awareness that also has awareness raising at its core and is where you can find the symptom word searches.
  • Inspired Living with Fibro: the blog where you can find the list of 200 symptoms.

I have a couple of posters, cards and tees etc available in my Spoonie Store that list symptoms too. My royalties are set very low so that people can afford to buy things, but what little I make I donate most of to fibro action using Ploink.
Here’s one of the designs available, click the image to see more.

Many thanks to all who’ve made purchases. Your help spreading awareness is MUCH appreciated.

fibro t shirt

Click to see other items, including bumper stickers and cards etc.


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Quote by Ralph Ransom.
The rest of the quote is:

Before the reward there must be labour. You plant before you harvest.

Well over the years I’ve done a massive amount of labouring, planting and tending. Yet here I am still sowing tears and trying to deal with a cornucopia of wretched things…and mostly because of an awful night, the black dog arrived and I was suddenly overwhelmed and utterly defeated.
I am truly thankful that I managed a good nap and now feel less suicidal. This serves to further reinforce the massively negative effect that sleep deprivation has on emotions, amongst other things. No wonder the suicide rate is so high amongst people with Fibro.

The need for valium continues and my GP has also doubled my SSRI dose.

After three blood tests Mum’s been diagnosed with diabetes and but has to wait for yet another appointment before any treatment will begin, which will probably be in about a month. Our GP made an urgent referral for her to see a consultant at the chest clinic in early December of last year. Then rang up to try to hurry things along for mum and the appointment is…April 15th. If you’re reading this and live outside the UK, be grateful.

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Discovered a new app, thanks to Instagram. It’s called ‘Waterlogue.’


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On a good night/day I’ve been managing perhaps two sleep cycles. (A sleep cycle lasts 90 mins. Bare in mind though that they’re not true sleep cyles because we fibro peeps don’t reach the lower restorative level.) This has been going on for about three weeks and steadily worsening to the point where its just occasional fitful dozing, not even a sleep cycle.

Insomnia

Lack of sleep has many side effects, apart from the creeping black cloud of depression my nerve pain has been escalating in a most disconcerting fashion. Friday my left side started going numb, which strangely enough isn’t actually preferable to pain. I was losing feeling in everything from the two smallest toes and little finger on my left hand to the side of my face and it seemed to be spreading…

Facebook sticker

Made using a Facebook messenger sticker.

By Sunday the feeling was returning, but the right side started showing signs of going the same way and the usual nerve pain was screaming… (These weird symptoms, like loss of feeling or an inability to put weight on your ankle coz it feels like its been broken, usually last for a maximum of 48 hours and after nearly 7 years I tend to ignore this stuff and just cope as best I can. Not always the best plan as my nearly exploding gallbladder proved.) 

After having pressure put on me to do it, I rang my GP on Monday. Apparently I’ve never mentioned the numbness to her before, (well seeing as when I do mention stuff, like my blue toes for example and she replies “its just another fibro thing” I usually figure, what’s the point it’ll be another fibro thing? Yes I know there’s a middle ground, I just haven’t found it yet.) I have mentioned the insomnia before and she’s had no solutions, but in fairness to her its never been this bad. Anyway long story short, I’m having to resort to the dreaded “very addictive” diazepam for a week. Then maybe increase the ssri dose. Yay more drugs 🙁 can’t believe how much my life has changed…

Positive thinking

Trying to be positive, but its tough. Also trying a LOT of hypnosis apps, hopefully I’ll report back on them at some point soon. See you on the other side, I hope, dear reader. Apologies for all the unanswered messages etc hope you understand.

Wish me luck…and lots of visits from the Sandman. 

 

 

 


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