Bath bombs and taking a break

I didn't post last week as I had a very tough week both physically and mentally so decided to take a step back, utilise self care and do some craft projects that were just for me. If you want to know more about self care i wrote a whole series that starts here. I apologise for the not very photogenic photos but i'm still not 100%.

While i was having a break I made this beautiful dream catcher just for me:

I'm torn between making more and listing them in the sending spoons store or keeping it as a hobby just for me. What do you think?

To keep myself busy I've been making bath bombs to give as small presents for Christmas. I thought I'd share how to make them and what I learnt from my disastrous first attempt.

The recipe:

1 cup bicarb (baking soda)
1/2 cup citric acid
1/2 cup epsom salts (I use Dr salts eucalyptus muscle therapy salts)
1 tsp water
2 tsp essential oil (I used lavender)
3 tsp oil (I used coconut oil. If solid microwave for 20 seconds first)
Extras like food colouring, shimmer, sugar stars etc

1.Add all the dry ingredients together (add petals too if using) and mix well.

2.Add the liquid ingredients together, including the food colouring and shimmer.

3.Carefully add the liquid to the dry a drop at a time whilst stirring. If you accidentally add a bit too much stir quicker until absorbed.

4.Once all the liquid is absorbed you should have the consistency of wet sand and it should hold its shape when squeezed together.

5.Fill a circular mold a little bit over, (for a mould i'm using a christmas decoration featuring Olaf from frozen, you can buy proper moulds or even cut a tennis ball in half for a mould.

It's important to fill it quite tightly and make sure it's firmly in place.

6.push the two halves together and leave to dry. 

I put mine in the fridge for 4 hours to dry.

Tips:

• To make different colours in one bath bomb, separate the dry mix into different bowls then add food colouring and mix before piling into layers in the mould.
• To put something in the centre of the bath bomb make a small hole in both halves and fill with goodies then press together.
• For petals on the top add petals to mould first then press mixture in.
• If you make a batch that reacts too quickly or doesn't work it makes a great toilet cleaner!

Fatigue with chronic illness and wristies

So since joining Conscious Crafties I've met some amazing talented people. I've also started to sell a lot of my Wristies so I thought I'd show you them. These are heat-able wrist warmers with optional scents made with real petals and flowers. I make them out of polar fleece so they are lovely and soft and hold their heat really well. They're great for arthritis, RSI, carpal tunnel, Raynaud's, EDS and fibromyalgia plus the occasional ache and pain. Now I've shown you these i'll tell you what they have to do with fatigue:

I'm making some today but fatigue is getting the best of me so all I've managed to do is pin them and make final cuts. Because fatigue will mean this post will take me all day to write I thought id write about fatigue.

Someone without chronic illness might think, or say: "what's the big deal? your just tired!" or "get some rest and you'll be fine!" That's the issue. no matter how long we sleep for we never feel refreshed, no matter how hard we rest fatigue will still hit us. After all we still have to eat, breathe, go to the loo, talk and try to have a life. All these things take precious energy when we have none.

 Our bodies are fighting our illness' so we start the day with less energy than a normal person and use more doing everyday tasks.

So what does fatigue actually feel like?

It isn't just been tired, it feels like having the flu or the fatigue you might feel after running a marathon. It is a bone aching, hard to move, hard to think, fighting the urge to fall asleep, nauseating battle. Sometimes this battle starts because we've done something like gone to the supermarket or had a day out, sometimes it starts because yesterday you did the laundry. It doesn't always make sense.

Todays battle is because I put the clean clothes away in the wardrobe and cooked a meal. That simple. I didn't run a marathon, I haven't got the flu, I didn't do an aerobics class. I put clothes on hangers and made a risotto from frozen ready prepared veg. You see the problem?!

How do we cope with Fatigue?

Luckily I can still function with the fatigue I'm experiencing today (otherwise I wouldn't be writing this), but it means that all other plans are off the table. Everything I can do from bed will be done from bed. If I have to move I will be using my chair, you see the side effect of battling fatigue is if you fight too hard you still lose.

If I don't take the time to rest today and use as little energy as possible tomorrow will be worse. At my worst with Chronic fatigue / ME I was working and I pushed through the fatigue to turn up at work and try to keep my job. After a while things got so bad I collapsed after trying to get dressed. Just pulling some clothes on was too much. After that point it took me 6 months of careful pacing and sick leave to get to the point where I could do one thing that took a large amount of energy a day, for me that was driving a short distance or going to the local store for some food.

I had to learn what used up the most of my energy and limit that. I had to learn to take rest breaks without feeling guilty and lazy. Most of all I had to learn to listen to my body.

There's a great app called MECFS diary.

I used that to log how much energy I was using. After a week it gives you a functional ability percentage. That percentage shows you what your limits are. I also used this app to see when I should rest. For every 1 hour of high (red) energy activity I scheduled 30 Mins rest.

I used AYME's functional ability scale available here (PDF) to work out my limits. I now flit between 60 - 70% instead of stuck at 20%.

How can you help someone with chronic fatigue/ME?

1. Don't get mad at them if their not able to do something

2. Don't blame them for their fatigue

3. Don't make them do things/ push themselves it wont help

4. Do Give them space to rest and pace themselves

5. Do try to help them by splitting activities into small chunks with time for rest in-between

6. Do support them when their overwhelmed, support is so important

7. Don't assume that if they did something yesterday they can do it again today ( we wish)

8. Do stay friends with them, they don't like having to cancel on you and they need your support

9. Make sure they have food and water within easy reach (we tend to neglect ourselves when fatigue sets in)

10. You've already done it by reading this post. Understanding how we feel helps you to empathise with us.

As always thanks for reading, I hope this can help in some way whether you experience chronic fatigue/ME or know someone who does. Feel free to leave any questions or comments below.

Next weeks post is going to cover the Apps I use to manage my chronic illness' and symptoms, until then have a great week.

Laura:)

Conscious Crafties

So this week I was fortunate enough to be accepted into Conscious Crafties.

The Chronic Comforts store has been set up, there's not much listed at the moment but its growing day by day. You can have a look here:

https://www.consciouscrafties.com/Crafties/chronic-comforts/

Conscious Crafties Is a lovely, friendly community of people with chronic illness' or people who care for those with Chronic Illness' to sell their crafts. It goes further than an online store. There's a supportive community where crafties can find support, advice and creative genius. It's all the brainchild of karen thomas a lovely lady and a spoonie  herself, here's what she has to say about why she founded Conscious Crafties:

How was the idea born?

Karen Thomas
Conscious Crafties Founder

Hi there, I'm Karen and after becoming sick in 2011 almost overnight, I found my way to various support networks. I noticed we all shared the same sense of loss, we'd lost friends (because not many stick around when you have to let people down at the last minute), some of us had lost jobs (due to being unreliable) and the biggest thing that hurt deep into my soul was the overwhelming loss of purpose, we all felt useless. I desperately wanted to make that better. So in 2011 the idea was born to create a community for everyone to showcase their talents in one place and give people a way of creating their own businesses. It was also a way for me to feel useful again, by using my skills to help others. Conscious Crafties is about empowering us all to be successful, tell our stories and meet new like minded friends who understand our struggles. I'm also hoping it plays a key part in changing the way Disabled and Sick people are viewed by the world. We can still contribute and are incredibly talented!!

 

My Beautiful Friend Sam

Conscious Crafties has been built in honour of Sam, my beautiful friend I met through sickness and our love of crafts. Her strong fight with Gastroparesis and POTS sadly ended in Oct 14. Heartbroken, I knew then, after years of thinking about it, the idea for us all to sell our crafts and skills within a supportive community needed to be launched, so it could help people NOW and give them hope for the future.

Karen has been so patient with me and has supported me to open my Conscious Crafties shop. The whole site has tidbits of advice at every stage and well thought out timesaving features all designed to save you some energy. Ive only been set up 3 days and im already making friends.

Once you list a product the "techy magic" on the site posts it on social media to get your products seen by a wider audience.

I've been amazed at the wide range of skills and talents there are, from artists to wood burners every kind of art and craft is welcomed. You can apply to become a Conscious Craftie here

Or buy something from a talented disabled person or carer here.

As usual any questions or comments just let me know below....

As always thanks for reading,

Laura :)

Awareness friendship bracelets that give money to Spoonie charities

A couple of weeks ago I was experimenting making Macramé bracelets with tiny Tibetan silver spoon charms. I had an idea that as they were quite quick and easy to make I would make one in different awareness colours and with each order offer the option to make a donation to a charity. I linked options to donate to charities that raised awareness, funded research into treatments and cures or funded support groups for different chronic illnesses'. They're all available in my Etsy shop.

This one I made for chronic fatigue/ME. Blue also happens to be the awareness colour for Dysautonomia (common in people with EDS) and restless legs syndrome (common in many chronic illness'), Crohns disease and many others.

This particular one has sold and the kind buyer donated to the MS trust. Although purple is not typically the awareness colour of MS, other charities where also mentioned in the listing raising awareness for all Spoonies. Purple is typically for fibromyalgia, Chiari malformation, some Crohns charities use purple as well as blue, cystic fibrosis, lupus and many more.

 

Finally, Black and white is for EDS, rare diseases, primary immunodeficiency and a few others. I Haven't stopped yet and their are still plenty of chronic illness that need awareness. My next creation shall be a red one for Vascular EDS, HIV-AIDS, Marfan syndrome, Heart issues like congenital heart defect, congestive heart failure, long QT syndrome and blood disorders like Haemophilia.

If you feel like raising some awareness yourself or want to know more about awareness colours / ribbons You can find a handy chart of different awareness colours here:
http://www.disabled-world.com/disability/awareness/ribbons.php

Is there a chronic illness you would like me to raise awareness for or a charity you think could use some support? Just leave me a note in the comments section.