I am a girl who was swallowed by a wolf...

So I did that Facebook word cloud thing that everyone is doing, because they got lovely things in theres like 'Time, love happy, today, beautiful <3'.

I got this...

Three days on I'm still too ashamed to post it on Facebook. I realise I'm a broken record, consumed by Chronic Illness. It's what defines me and I hate it.

I got swallowed by the wolf and became it.

It's time to refocus and regroup. 

So I started a new Etsy shop without the word Lupus in it!

Wardrobe clear out

You may have seen my recent post about saving money, well I'm having a wardrobe clear out and donating 10% of everything I sell to Lupus UK.

http://www.ebay.co.uk/ulk/itm/131643410634 

Please take a look at my items and share with friends... 

A folk song...

I found stellar today! 

https://steller.co/s/53Lymb77xfy

Happy Samhain all

💀🕸👻🎃🌾🍃🍁🍂🌳🌿🍄

Lupus and Insomnia

So it seems that when Lupus is active insomnia follows. I regularly see other Lupies online at this time with the 4am call out to see who else is awake. I have 3 main types of insomnia:

1) Painsomnia - this is pretty straight forward, you are in so much pain you cannot sleep. Strong painkillers such as Co-codamol or Tramadol allow you to grab snatches of sleep but the whole thing becomes desperate and exhausting.

2) Restless Legs - This is the most frustrating and happens to me on and off. I can have a month of nothing then 2 months of being driven to despair. My legs twitch and move on their own. They kick and demand me to tense and loosen the muscles. If I don't move the sensation becomes unbearable. I have no idea if this is partly psychological as I dread the moment I get tired, and fear the bouts of it coming. I have to try to distract myself or walk around to get it to calm down. It's the most maddening and torturous feeling. No matter how tired you are you cannot sleep because of physical discomfort. It definitely has a physical root too as I kick and twitch constantly in my sleep.

3) Just Wide Awake - Nights like tonight I just cannot sleep for no rhyme nor reason. Nothing is on my mind and I am simply not tired. In fact my brain is doing some wonderful thinking and creating ideas. I end up watching endless amounts of 'catch up' or pinning on Pinterest. I know I am flaring at the moment so that may be the reason. I have a sneaky suspicion it's the high dose of Prednisolone I'm on. I'm so fidgety all day and have absolutely no concentration. I feel restless and irritable and do not want to be taking these drugs. Hopefully soon there is another answer on the horizon. Or maybe it is just the full moon!

So I'll leave you with some sleep facts...

P.S. I have a sneaking suspicion number 22 doesn't help me!

Speak out

Sometimes it's almost a relief when a visible symptom appears because you can prove its not all in your head. I read this article today. It says a lot about the inner thoughts people with invisible illnesses have. 

http://m.huffpost.com/us/entry/6560026

It also makes you appreciate how good some practitioners are. My rheumy nurse and physio are the best. Time to take them a gift I think.

Spoonie Solidarity

A couple of weeks ago whilst in the middle of a flare I saw that +ChronicallyLiving had posted about Spoonie Survival Kits . I was intrigued, this looked like a fab idea to treat your self whilst flaring. Then I found out they are doing it to raise funds for various causes.

'Each Spoonie Survival Kit contains a unique assortment of items that will hopefully help you to smile and remind you that you CAN do this.
In the medium kits, there are a range of items that symbolise different aspects of being chronically unwell, as well as some small luxury items that will hopefully bring comfort to the recipient and remind them that somebody cares.
We are entirely non-profit: 25% of the sale of this item goes towards sustaining the project and 75% goes to a chronic illness charity. Our current charity is Action For ME.'

So within about 5 minutes I had purchased one, they only had small one left so I went for that. A few days later it arrived and it felt like a special Christmas.

It was full of spoonfuls of kindness and love and it made me very happy. 

Today I saw that they are up for an award which would help them to do more. 

PLEASE READ💗

Spoonie Survival Kits is up for a huge award and the chance to develop as a social enterprise, including a prize of £10,000 towards the cause! The project with the most votes goes straight through to the final and we're currently in second place so any votes are really appreciated! To vote, follow the link in my bio and click on where it tells you the current number of votes. When it turns red, your vote has been cast! It takes literally seconds and you don't need to put in any details. 
We want to spread as many smiles as possible, raise as much money as possible and also raise as much awareness of chronic illnesses as possible too and the support from you guys is what helps us to do that! Love and hugs 💜💙

•••

http://www.nacue.com/spoonie-survival-kits/

Steps to happiness

Kindness is the small acts that make a difference like Paul making me breakfast to save a spoon.

Working hard is not a chore when it's your passion. I just need to pace myself so I can work more.

I humbly accept that the people I work with are amazing. Collaboration makes us great. 

Smile often especially and strangers. I like people who smile whilst driving as I find it so tough.

Keep honest with yourself and you limits. Don't promise the world and if your struggling let people know.

Stay loyal to your sisters because they are wonderful and loyal to you.

Travel hurts and makes me sleep for days. When it's worth it it's great and I love new places. Just give me a rest when I get there.

Never ever stop learning especially from children. They are wise.

Be thankful always for moments that make you smile. The smallest memories are often the best. Like making someone smile by baking them cake or a hug you really need when having a tough day. Gentle hugs though when everything hurts.

And love, yourself first because when you look after yourself you can give more to others.