Be Kinder

Recently I have been having problems with my speech. I can’t get words out. Or my words end up coming out as gobbledygook. As a writer, I love words and I have, to be honest, always been better at writing things down rather than speaking my thoughts out loud. But this is, this is something else.

This isn’t a feeling-sorry-for-myself post. This post is a plea to everyone to have a bit more patience, and a bit more understanding if someone is struggling because you don’t know what their story is. You don’t know what they’re going through.

I had to ring the dentist to book an appointment. Usually, when I have one of my moments, I laugh it off and say “Oh, sorry, it’s Monday and my head is still in bed,” or something similar. Mostly, people are cool and it kinda just passes them by. They accept it. The dentist’s receptionist didn’t. The receptionist was impatient and downright rude.

Now, I’m not judging her, because I don’t know what’s going on in her life and maybe I had caught her at one of those moments but shit, that conversation gave me loads to think about.

Now, I’m struggling with my health at the moment. I won’t bore you with the details, apart from the speech bit, but it got me thinking about other people – the old, those with autism, those with post-stroke problems to name a few – and how we treat other people in society who might not be quite as on the ball as we’d like them to be. Life is speeding by. Life is getting faster but what if we’re not? What if we can’t keep up?

Shit, some days, I can’t even get Alexa to understand me! (Alexa please play The Prodigy and she plays Panic at the Disco!!? Now, I like Panic at the Disco but it ain’t The Prodigy. Actually, come to think of it, have you ever tried asking for The Prodigy after a few beers? That’s how I sound on a normal day to be fair :)).

Maybe we all need to be a bit kinder, a bit more considerate?

Maybe we all need to calm the fuck down a bit?

Sorry for all the swearing.

Actually, no I’m not!!!

There are some times when “Oh dear” just won’t do.

 

And yes, the featured photo has nothing to do with this post. But, it is a cute dog. You’re welcome ūüôā

 

Twenty-Four Beautiful Things I’ve found on Conscious Crafties – Part Two

This post follows on from my last one in celebrating the talents of those who live with chronic illness or are carers of those with illness. These are people who sell their beautifully crafted items on Conscious Crafties, an online marketplace and a supportive community of like-minded people.

Conscious Crafties

From Fiona’s Crafts and Gifts:

Fiona crochets¬†and makes handmade cards while living with ME, Brittle Asthma, Diabetes, Arthritis, Neurofibroma, Migraines and Coeliac Disease. Her shop is ideal if you’re looking for a gift for a newborn baby.

Here’s a gorgeous¬†pink crocheted blanket available in small, medium and large and ranging in price from ¬£15.00 – ¬£25.00.

And my personal favourite, the New Baby Girl Card priced at £3.00 and with free postage and packing:

The card is 6 inches by 6 inches and has a white organza bow and three sparkly pink gems on the front.

Are you looking for something truly unique? Then maybe take a look at items from the next shop on my list.

Branch Beads:

Branch Beads is run by Sarah who is a carer and also a mum.  She has twins aged 5, a son with dyskinetic cerebral palsy and a daughter with an autistic spectrum disorder.

There are all sorts of handmade Jewellery in Branch Beads, but they specialise in Wire Animal Pendants. I particularly love the hare pendant:

Priced at £25.00, this little chap is made from high-quality silver plated wire and a turquoise dyed Magnesite stone. Also, check out the cute wire wrapped moonstone polar bear:

This is priced at £25.00 and has onyx eyes, a crystal bicone nose and a large rainbow moonstone body.

From Gert Lush Designs:

Gert Lush Designs is a treasure trove of beautiful handmade items. Run by Sharon who crafts whilst living with Restless Leg Syndrome, Sleep Apnoea, Lymphedema, Type 2 Diabetes, Depression, Anxiety, Memory Issues and Mobility problems.

I love this¬†At Rainbows End¬†card, priced at ¬£2.50. The beautiful background reminds me of holidays spent in Ibiza. It’s got that hippie vibe to it and I love it:

Also, check out this gorgeous moon and stars pendant priced at £25.00:

Sharon writes that “These beautiful handmade wirework pendants make perfect gifts for the lady in your life, what better way to show her you love her like giving her the moon and stars?” She’s right. I would love one of these in my Christmas stocking!

From Felt Treasured:

Claire, who runs Felt Treasured, crafts whilst caring for her husband who has heart failure, COPD and pulmonary hypertension. She has also recently been diagnosed with fibromyalgia.

I’m absolutely in love with Claire’s Christmas Decorations! Take, for example, the¬†Pack of 2 Christmas Owls¬†priced at ¬£7.95:

Or her cute Mouse/ Rat Fairy Decoration:

Priced at £9.95, is approximately 17 cm tall and has been lovingly given sparkly wings and a silver star.

From Alycraft Book Folds:

Alycraft Book Folds, is run by Alyson who crafts with Rheumatoid Arthritis, Fibromyalgia and Osteoporosis.

My most favourite item in her shop is this Unicorn Magic Book Fold, priced at £35.00:

Or, are you looking for something truly unique to give a loved one this Christmas? What about a¬†stationery set¬†using your loved one’s favourite book title for just ¬£23.00?

This is such a clever idea!

From By Samantha Webb:

By Samantha Webb is the place to go to if you want a cute teddy bear. Samantha crafts with Rheumatoid Arthritis and Anxiety Disorder.

Lonnie¬†has got to be one of the cutest bears I’ve seen!

Priced at ¬£129.00, Lonnie is made with beautiful dusty pink mohair and has cotter pin joints and glass eyes and¬†a pink bow around her neck with her little bells. Samantha writes that “Lonnie¬†loves the springtime, she wants to grow roses some day and spend her days tending the garden. She would love a home with someone who loves florals too.”

Equally as cute is Edmund the Sleepy Bear, at £29.00:

I think me and Edmund would get on quite well as, like me, he “is so sleepy he can hardly keep his eyes open. If only he could find a comfy spot to lay down his little head and dream about chocolate and strawberries, he would be the happiest little bear in the world.” Me too!

As you can see, the lovely people at¬†Conscious Crafties¬†are amazingly talented people who craft despite all the struggles they face. Why don’t you consider giving one of their beautiful handmade gifts as presents this Christmas? You won’t be disappointed!

 

With Thanks to Karen Thomas, founder of Conscious Crafties, and all the lovely talented people who agreed to take part. You rock!

 

With thanks to smborkowski6 on Morguefile.com for the featured image.

 

Chronic illness – Learning not to smile and say the lie that is, “I’m fine.”

I read an excellent article yesterday, written by Katie Willard Virant and published on the Psychology Today site, in which she argues that those of us with chronic illness can learn a lot from the #MeToo Movement. You can find the article here.

She asks, “Can we learn from the bravery of the #metoo participants and speak of our painful experiences in a world where many wish we would stay silent?”

Yes, we must learn to find our voices and share our stories. We must learn to stand up and shout “Chronic Illness? Yeah, #MeToo.”

Except…I won’t. Not yet.

The truth is, I’m just not that strong enough. It takes so much effort sometimes to just to get through the day, without sticking my head over the parapet to say, “Yeah, #MeToo.”

we should all be able to stand up, to tell our stories

Don’t get me wrong, I strongly believe that we should all be able to stand up, to tell our stories and, most importantly, be listened to.

But, I’m just not that strong enough. Not Yet.

In the article, Katie Willard Virant talks about The Blamers, The Shamers, and the Disbelievers. They’re bloody everywhere. I know exactly what she’s talking about and I don’t really talk to people about my illness. Friends and neighbours are in the dark about my fibromyalgia. Yeah but – I can hear some of you say – you’re telling the whole world, via your blog, that you have Fibromyalgia.

I am.

But this is easy. You’re not facing me. I don’t have to hear your responses. I don’t have to see your face. I’m not going to be let down. And, I don’t have to respond to “The Blamers, The Shamers” or “the disbelievers” here, not if I don’t want to. I’m in control.

I’m just not that strong enough. Not Yet.

Out there, that’s where the fun starts. I haven’t trusted many people with my secret, out there, in the real world. But I’ve encountered some, especially in the early days of my diagnosis, when I was naive and thought certain people, who I believed I was close to, would understand. I’ve had the “you’re just not eating the right kind of food,” comment from someone I opened up to. Another person said, “Oh, Fibromyalgia? Yeah, that’s very trendy now, isn’t it? Really, that’s what doctors say when they don’t know what’s wrong. It’s not¬†real.”

Yeah.

I’m so trendy. I want to be so now.

No. I’m not a f^^king fashionista who wants to be bang on trend. And I’m not some eyebrows that are “on fleek”. And this pain? Not real?

Yeah, ok. So, it’s in my imagination when I can’t walk the dog, when my body feels like it’s on fire, or when I can’t go out because it’s just. Too. Much…

I won’t tell you any more about my pain. That would be too boring. And an inconvenience. You don’t want to know about my pain. You just want me to smile and say, “yeah, I’m fine.”

But you know what’s even worse? What makes me feel ashamed? It’s when I agree with them in the conversation. Not because I believe what they’re saying (I don’t. My pain is VERY real), it’s because I don’t want to be a nuisance. I want to shut the conversation down. I want to climb back into me.

just…smile and say, “yeah, I’m fine.”

I don’t talk about personal things to people. They usually let you down. (Don’t worry, I have fantastic support from a few special people. YOU KNOW WHO YOU ARE. And I love and appreciate them for it). I have had people who should know better turn away from me. But not my hubby. He has my back. Without him and a few other people, I would be absolutely stuffed.

But still, I’m quiet.

People have, in the past, told me that I just don’t know how to handle pain. That I’m attention seeking. The silent implications of their words are written large;¬†you don’t matter, you are a nuisance, will you just shut up?

But still, I’m quiet.

When I saw my CBT Counsellor because I was frustrated and felt that no one was taking me seriously in the medical profession, that they thought I was somehow making it up, he asked me why I thought that was? I didn’t know. Then, he asked what my level of pain was at that point, sitting in front of him, from 1 (the least pain) to 10 (the most pain). I said, around a 9. “And yet, you have a smile on your face. You look well.” He did believe me. He was making a point. It was then, after a lengthy conversation, that he made me realise that I was very good at wearing a mask, to make other people happy by not saying what I was feeling.

I’m too much of an inconvenience.

So, I’m quiet.

I’m not good asking for help. I’m not good at telling people what’s going on, and I’m not good at standing up for myself, but I’m bloody good at masking the pain.

AND I need to STOP.

I am worth it. And you are worth it too.

I will stand up and say #MeToo for chronic illness.

But not yet.

You see, I’m still learning. And it’s not something I’m good at. After years of hiding, of being quiet, it takes courage to stand up and say “me too”.

But I’m getting there.

Slowly.

BUT, I am getting there.

Until then, I have #MyTribe. Small in number, but big in support, and to them, I say thank you!

 

With thanks to Clarita, at Morguefile.com, for the featured image.