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…
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:
…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…
…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.
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.
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,
Posted by Sand on Nov 14, 2014 in Life | 0 comments
The last 10 days or so have been…even more of a roller coaster than usual. I want to update all the WONDERFUL friends I have that have been texting and emailing me with their love and support, I’m lying on my bed feeling pretty much totally ‘Ack!’
I think part of the reason for my recent, and inevitable collapse is that I’m tentatively hopeful that there’s a light at the end of this horrible dark tunnel and I promise an update ASAP.
In the mean time, here’s something that I learned today that gives you a window into my current mental state:
No matter how long you run the cold tap for, the water’s never going to get hot…
Posted by Sand on Oct 7, 2014 in Life | 2 comments
I started a blog for sharing stories about District Nurse ‘care’ and anything similar that highlights the impact that poor funding and organisation has upon medical treatment,
At the moment there’s not much there, but there is a link to a petition calling for more DN funding, so I’d be grateful if you could sign it. Thank you.
Regarding my aunt, (thanks to all who continue to send their best wishes and support, it’s much appreciated, I’m sorry for not being around online much, if at all.) things are not looking good.
Since she returned to Ward 11, after Mum raising her concerns and an out of hours GP being called, her condition has continued to deteriorate. There were a number of samples taken yesterday and an xray done and Mum is waiting to hear from the consultant’s secretary with an appointment to meet him. Thankfully my cousins Dave and Linda continue to be a tower of support and strength to Mum, and Linda will hopefully go to meet the consultant with her. They suspect that the fluid retention is being caused by a problem with her liver and kidneys, but don’t really know…but my aunt is very ill and not really aware of much at all any more. Mum managed to reach her on Saturday, but felt she was losing her by Sunday… The confusion has been aggravated by a faulty hearing aid, but of course the nhs being in the state it is, as far as I know they’ve been unable to sort this out. I suspect though, this is the very least of the concerns.
I’m finding it hard to stay positive and fear the worst now…
The next post will be my letter to the hospital complaints department.
Posted by Sand on Oct 5, 2014 in Life, Uncategorized | 5 comments
They moved my aunt to the intermediate unit (rehab) on 25/9/14
When she arrived she was seen by a Physio who gave her exercises she couldn’t manage and was told by a nurse that she had to stop thinking of herself as being ill because she wasn’t anymore.
She was told off by nurses for not doing the Physio exercises properly (yeah that inspection that judged the ward to be failing said the problem was management bullying seems some staff have been negatively influenced as a result…) until a doctor saw/examined her and asked why she was being expected to do those exercises when she was too ill for them.
So they moved her to a different bay, in the same ward.
Mums been too weak due to the diabetes medication to visit until yesterday but we’ve been getting more and more worried because my aunt was getting more confused and tearful again. Other members of my family who visited raised their concerns with staff, but to no avail.
When mum went in, firstly she noticed that there was blood on the back of the dressings on my aunt’s legs. (The dressings are supposed to be changed when they become soiled. The soiling isn’t usually blood.)
Also, my aunt’s stomach is so swollen she’s virtually unable to get up from a sitting position. Mum queried this and asked if my aunt was being given her water tablets regularly…
…only to discover that they stopped the two medications that do this when she went into hospital on the SECOND OF SEPTEMBER! So she’s not had ANY since then.
Now I understand that this was probably due to the fact that, as far as I’m aware, at least one of those medications puts strain on the liver and hers was failing, as were her kidneys at one point. But this should have been a short term measure that was addressed before too much time had passed. Either to put her back on the meds that are known to be effective for her once her liver and kidney function returned to normal, or to prescribe an alternative.
Instead there was a doctor, who frankly sounded like he was out if his depth, telling her to stop drinking, due to test results. To the extent that when he next requested a water sample her urine was BROWN…then she was told she needed to drink more. This pattern was repeated iirc…sheesh.
Anyways the result of Mum being insistent last night was that the ward sister rang her later on to say she was concerned too and had asked the out of hours GP to come in to examine her. When he’d seen her he declared her too ill to be on that ward and she’s been moved to an assessment ward to be…assessed.
If you’re reading this and you’re;
b) don’t live in the UK
I do hope you’re feeling lucky!
Edit: Just had a text, they’re sending her back to the critical care unit…and putting her back onto her usual water tablets.
When there’s a bed available. *sigh* I’m convinced that’s at the core of why she was moved too soon.
So what does this tell us boys and girls? Not enough beds, not enough staff, poorly trained staff. One word: funding.
Struggling with this a little bit at the moment
Edit two: It took until Monday, but she’s now back on Ward 11 in the critical care unit. Most of the staff there were wonderful, especially Alison, to whom we owe a great debt. So glad that the hospital twitter account noticed my gratitude 🙂 And so nice to be able to have something positive to say.
Posted by Sand on Sep 26, 2014 in Art, mobile photography | 0 comments
He’s behind you!
…wondering if I should have added some light to Bartleby’s eyes again?
Posted by Sand on Sep 19, 2014 in Art, mobile photography | 2 comments
I clearly hid the fear source too well the first time…
Hmmm, though I may only have posted it to Instagram…
Bet you can guess who now.
Posted by Sand on Sep 15, 2014 in Review | 2 comments
My inclnation to use organic skincare as well as watching what’s in the food I eat has led me to a slight Lovelula shopping addiction.
*I’m hoping the reduction in chemicals etc will help my struggling body etc. I did this BF (before fibro) but getting the shingles and then being knocked flat by fibro kind of made me doubt the effectiveness of such a change…but then extreme stress takes its toll no matter what you put in or on your body.
Lovelula do a monthly beauty box, for £12.50 each month you get a box of organic skincare goodies that amount to more than what you’ve paid. It’s a lower cost way to try various organic skincare brands.
This month’s box reflects the fact that last week was organic skincare week and it was filled with products that are endorsed by the soil association.
Danbo wondered what would be inside…
Each box includes a voucher code so that you can get a discount on any of the brands in the box until the end of the month.
Danbo likes the look of Herbfarmacy’s mallow balm
One of my favourite organic brands is proving to be Balm Balm, I’m totally smitten by their frankincense range, but more about that another time. There was a large bottle of their rosehip serum in the box, which costs £13.25 from Lovelula.
I’d previously tried their rosehip facial range, Balm Balm often do little gift sets with travel sized versions, and whilst I like it, my combination skin just can’t take their serums. They’re just too oily for my currently hormonal skin.
But, this is easily absorbed elsewhere on my body, like my neck etc and as with all the Balm Balm products I’ve tried it’s fragrance is lovely without being overpowering.
Another brand in the box was Skin Blossom. Their range is more affordable than many organic brands and so far I’ve used, and liked, their shampoo. (Although as far as haircare goes at the moment I’m a tad besotted with the John Masters organic range.) The skin blossom product in the box is their facial toner.
Currently my facial routine is a foaming facial wash (I’m trying an Avalon organics one right now.) in the morning and Balm Balm’s Frankincense cleanser in the evening. (On the days when I have the energy to clean my face twice in one day…) I follow up with a spritz of Balm Balm’s frankincense hydrosol. What I tried doing was using a little of the skin blossom toner on a cotton pad to make sure all the cleanser was off my skin before the spritzing, but after a couple of days of this my skin started to look more unhappy than usual so I’ve stopped using the toner for a bit. It may just have been the menopausal roller coaster i’m on, so I’ll try it again in a week or two, but I may just use it after I’ve used a facemask or similar, or to freshen up during the day. The toner costs £5.95 from Lovelula.
Bentley Organic hand sanitizer costs £3.65 from Lovelula, and is fab. Most hand santisers I’ve tried leave your hands feeling sticky and then overly dry, and they often have a really strong smell. This is none of those things. It’s a light foam rather than a gel, dries with a more natural feel and has a light pleasant smell that fades quickly. I’m a convert! The ‘nasty’ hand santisers already in the house and car will now only be used for cleaning rubber stamps and my crafting mats etc. (Which they’re ace at. Every art room needs hand sanitiser and cheap alcohol based baby wipes. Top tip.)
As I’ve already mentioned I’m a fan of balms so I looked forward to trying another brand. Although this is a facial balm i’ve not used it on my face yet, as I suspect it’ll be too heavy. It smells lovely, a very light vaguely citrusy smell with an undertone of rose geranium. It reminds me a little of Balm Balm’s Relax balm. So far I’ve been using it on my elbows and various other dry patches of skin. It sinks in quickly and is light enough that I think those with dry complexions would find it great.
Mallow beauty balm costs £14.50. Yes, you read that right, Septembers beauty box is certainly great value.
And there’s more…
Essential Care (now known as Odylique) lip silk costs £5.50 and smells and tastes like oranges. It does indeed feel lovely and silky on your lips and is refreshingly citrusy, but I’m not yet convinced how much it moisturises my lips before wearing off. At least I’m not ingesting anything nasty from it, but I think I’ll probably mostly stick to Burt’s Bees lip shimmer and use this before bed.
The final couple of goodies in the box were two tester size Pai skincare products. Their advocado and jojoba day cream and their exfoliator. The full size of the day cream is £30. I’ve not tried it on my face yet, but like the other products in the box the fragrance is light and pleasant and it’s a light, silky, easily absorbed cream.
It’s the exfoliator that interests me the most though. Here’s their blurb about it:
Pai Kukui & Jojoba Bead Skin Brightening Exfoliator marks an innovative and ultra-gentle approach to exfoliation.Unlike other exfoliators, whose uneven grains can damage and irritate healthy skin, Pai’s clever Micro-Sphere system is formulated to protect as it polishes. Perfectly cylindrical 100% natural Jojoba Beads gently roll over skin, lifting away dead skin cells and surface impurities as they go. Enriched with exotic oils, the nourishing gel formula transforms into a silky milk, washing away to leave skin refreshed and radiant. High concentrations of Omega 3 & 6 plus Vitamins A, D & E instantly hydrate and soften your bright new complexion. Ideal for sensitive and problem skin, including skin prone to redness, eczema and acne.
Ultra-gentle Micro-Sphere exfoliation system reveals younger looking skin. De-flakes and polishes skin without damaging skin cells. Gel transforms into a silky milk which washes away to leave skin visibly brighter. Rich in Omegas 3 & 6 to lock-in moisture. 100% Detergent & Alcohol-free.
The exfoliator is £20 for 50mls and I’m looking forward to trying it as my face currently finds most exfoliators way too harsh. I’ve tried it on the back of my hand, and it seems lovely. I really like the way water transforms it into a silky milk that leaves your skin soft rather than stripped of moisture.
So, will I be using my 20% discount voucher this month? Probably! I’ll stock up on my Balm Balm frankincense duo and possibly get another hand sanitiser and I suspect I’ll get the Pai exfoliator, if my face is happy after I’ve tried it of course. I may also try Skin Blossom’s bath soak, sadly I can’t restock the shampoo by them that I’ve almost finished because Lovelula don’t sell it.
Will I continue my monthly beauty box subscription? (You can pay month to month, six monthly or yearly, but the price is £12.50 whichever option you choose.) I think so, though I’m not sure how much more room there is in my bedroom for beauty products…
You can currently buy this Beauty Box for £19.95, click the photo below to go to their website.
Each time you shop with Lovelula you get points to the value of 10% of your order, you can use these points to get money off your next order/s. If you click the photo above using my link and buy something, I’ll get a few points, so thanks lots if you do as every little does help 🙂