Chronic Comforts & The Prince's Trust Enterprise course.

Todays post is to raise awareness and share my experiences of the princes trust. The Princes trust is an amazing organisation which helps 13-30 year olds who are unemployed or struggling in school. They were founded by HRH The Prince of Wales and have been running since 1976.

This week I was lucky enough to have a place on their Enterprise program. The Enterprise program helps young people (age 18-30) who have a business idea, learn about business, create a business plan and apply for funding. They run a 4 day training course that teaches:

• Skills to run a business
• Marketing and selling
• Pricing, book-keeping and cash flow forecasting
• Business plan topics and structure
• Mentoring.

There is then a 1:1 meeting with the training facilitator to go over anything, and discuss the next steps. You're provided with a business mentor who then helps you develop your business plan and ideas, they're available through email and face to face meetings. Finally you attend a business launch group where you pitch your business to two Prince's trust volunteers and they decide if your business is viable, they then decide whether to loan you funds to start your business. Once you have done all this you become a Princes Trust supported business.

Did I happen to mention that all this training and support is FREE!! Obviously the loan is repayable (6% APR after the first 6 months, £20 a month until then), but everything else is free.

This course was amazing. The trainers for each topics were all volunteers and included those that had set up their own business' those that sold services for very influential business', accountants and venture capitalists.

There is a workbook you work on throughout the course, completing this can give you a level 1 and 2 qualification in Exploring Enterprise.

Now I'm working on the business plan with a view to re-launching the Sending Spoons shop with a new name of Chronic Comforts and some exciting new products in the pipeline!

The Princes trust runs in several cities and towns across the UK, for more info contact 0800 842 842
or visit: princes-trust.org.uk,

If you want any more information, or have any questions feel free to leave a comment.

As always thanks for reading,

Laura :)

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 :)

Social self care

Hi guys,

Todays post in the self care series is social care, if you missed yesterday's post on Emotional self care you can catch it here, if you would like to start at the beginning of the series here's The basics of self care.

So why is social self care important?

I don't know about anybody else but i have moments, sometimes days where i just want to hide in a cave and not come out. I don't want to see anyone, talk to anyone or be near anyone, i just want leaving alone. However there is then a real danger of becoming and feeling isolated, alone, lonely. As humans were sociable creatures, been isolated can make us unhappy, depressed and anxious.

Been chronically ill can make been sociable difficult. Pain can make us quiet and withdrawn, anxiety can leave us afraid of social interaction and fatigue can leave us not having the energy. That's all before we even get to the issue of having to cancel plans at the last minute due to flare ups / relapses  / down days. Luckily there are ways around this.

First of all having a small group of friends or even one friend that understands or at least tries to understand and doesn't get upset when you cancel is priceless. Hold onto that friend like they're a tub of  vegan ben and Jerry's and never let them go!

If you cant make big social events like parties (or they're too much) organise small events at a place where you know you will be comfortable and can manage if your condition worsens while your there. Invite those friends that are like gold and do something easy that can be quickly changed if needs be.

My favourite thing to do is invite one or two friends over to my flat and let them pick a movie or a DVD or netflix and get a takeaway in. minimum spoons used, no cooking or long conversations are needed and if i start to feel unwell as the night goes on i can lay down on my sofa, take meds etc... whatever i need to do. The upside is i get to see my friends and feel sociable, the downside is that they are having to come to me all the time.

If having people over isn't an option or you don't have any of those ben and Jerry's friends another option could be support groups. I go to a local fibromyalgia support group when i can and have met some lovely people who all understand , the comfort of shared experience is not to be underestimated. Been around people that have literally been there, done that and got the awareness t-shirt can be so supportive and encouraging. There are community support groups all over and a quick google search can normally find them. Failing that if there are any charities for your condition(s) they usually have a database of support groups. If there isn't one in your area why don't you start one?

Now if leaving the house isn't an option there's social media. There are lots of ways you can be social online. Twitter has a chat run by the lovely Tania Jayne (@whentaniatalks)  under @spooniespeak at 7pm every friday (GMT). She also has a blog (http://www.whentaniatalks.com/) and you can find lots of people to relate to using the #spoonie, #spoonieproblems, #spooniecult or hashtags for your condition(s). There are even spoonie netflix parties where spoonies arrange to watch the same thing over twitter and then comment on it together @spooniecult runs these and they are normally at 7:30pm (EST).

On facebook there are the invisible illness support groups, spoonie support line (to exchange numbers), spoonie support and then various support groups for different conditions.

I'm not very good on snapchat as i have not had it long so i don't know if there is any support there.

One things important, you don't have to be alone. If you feel like socialising there is someone out there for you to talk to, been able to talk to someone and knowing your not alone helps ease the isolation that can come with been chronically ill. It can also give you some awesome friends to help you through the tough times.

Again thanks for reading, feel free to check back tomorrow for the last in the series, Spiritual self care.

Have I missed anything? Do you know of other support groups, twitter chats or support that i've missed? Let me know in the comments.

Laura:)

The basics of self care.

Spoonie self care

This week I'm going to be covering self care, I'm currently having a flare up of my ME/CFS so I'm writing this post at quite an apt time over several days. Todays post is covering the basics, over the week I'm going to cover each area in more detail with more ideas for adapting to good days and bad days.

I spent two years learning health and social care at college when I was younger. That taught me the basics of how to care, nurture and support someone's health and wellbeing. I then went on to spend 10 years working in the health and social care sector where I put this into practice again and again. I'm now going to apply that to nurturing my own health and well-being and hopefully help you to do the same.

So the acronym we were taught was P.I.E.S but I think an extra "S" is needed. PIES stands for:

Physical

This is nurturing your physical health, for those with a chronic illness this could be as simple as ensuring that you have taken your medication, eaten properly, drank plenty of water and completed  your Physiotherapy for the day. This can also include exercise (if able) and anything else that you may need to do to look after your physical health.

Intellectual

keeping your mind stimulated. Read or listen to audiobooks, learn new things, take classes, complete puzzles, write, anything that keeps your mind busy. Remember that your brain is a muscle and also needs exercising. Spoonie life can be boring, this keeps things interesting.

Emotional

This can be a tough one for a lot of people especially those with disabilities who can have mental and physical issues. Counselling, journaling, crafting, getting out of the house, been around nature, cuddling pets, taking a bubble bath and chatting to a good friend can all help nurture emotional wellbeing. Emotional ill-health is just as serious as physical ill-health and should be treated as such. There are symptoms which are called "psychosomatic" these are physical manifestations of psychological issues like hair loss and rashes when stressed or a twitch when nervous.

Social

Pain and fatigue can make you cranky, anxiety can make you want to build a fort and never leave but its important to maintain contact with the outside world, even if your fort is amazingly comfy and you need a "warning, approach with caution!" sticker on your head. This doesn't have to be going to a massive party and talking to everybody you see! It can include social media chats like #spooniespeak or @spooniecult on twitter, support groups on facebook, having a Netflix and pizza party with your closest friends or simply making time to call your family and friends for a chat once in a while. Of course if you have the energy and confidence to go to a massive party and chat to everyone go for it! Its about what's right and feels comfortable for you.

Spiritual (The added "S")

This doesn't have to be in the traditional sense of the word. This can be anything from prayer to meditation or even spending time appreciating nature or animals. Watching a sunrise or sunset can be a spiritual experience for someone. As hippy as it sounds whatever makes you feel at peace with the world can take care of your spiritual needs.

Self care should nurture each of these, it doesn't have to be all of them everyday, but as long as they are all covered in some way you can take some control and responsibility over your own health and wellbeing. You can do as little or as much as you can. Adapt your self care to how you are feeling and remember you are important make some time for yourself.

As always thanks for reading. Each heading is now linked to each post from the series.

Laura :)