A folk song…

I found stellar today! 

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

Happy Samhain all
💀🕸👻🎃🌾🍃🍁🍂🌳🌿🍄
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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. 

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.

If there’s a whisk there’s a way

So Lupus can be positive, in particular it gives you the gift of savouring the small stuff. Today I began to feel a little better (probably the 20mg dose of preds) so I turned to my favourite things. 
My morning meds were done in style with a pot of English Breakfast Tea.

By the time I got to this afternoon I felt like getting in the kitchen and baking. I went for a super sweet sugary treat and baked a Cherry Bakewell Cake. I love almonds and cherries so this super sticky monster was a perfect choice. 

The recipe can be found here.
I find cooking relaxing and therapeutic. I get to use my brain and creativity whilst keeping busy. Then you get something great at the end and yummy to eat. I most enjoy baking for others and making people happy with cake. I think the love of baking comes from hours in the kitchen growing up. I cooked with my mum, my grandma and even my dad. I loved making anything but gingerbread men and cheese straws were always a staple. I love the fact that all the learnt tricks and tips are in my head passed onto me and ready to pass on. 
I get asked if I would bake for a living or go on Great British Bake Off. To the first I always reply its a labour of love that I don’t want to ruin with money. And to the second, as soon as they invent a Bake Off for disabilities I’m in, I just doubt I could take 16 hours in the kitchen when sometimes 5 minutes is a struggle. Plus I’d crumble with the stress.
So for the moment it stays a hobby that I enjoy the small moments of.
The only issue is with cake and steroids you can grow a little round!

Managing the money when you’re not earning much

Today we sat down for nearly 3 hours to do all of our finances. Uh oh.

Things have been tight and we’ve borrowed too much. It has been a tough year with Paul being made redundant, a motor bike being stolen, and my health declining. I can now only work part time or I get really sick so am taking major cuts in funds.

So how do you do it without feeling like its the end of the world?

I guess its being realistic so we’ve decided 3 things:

1) Stick to a budget – writing out what you actually spend is a big eye opener. We always use this tool.

2) Don’t cut out everything – we love eating out and our coffee so we are still doing this but looking at ways to make it cheaper – i.e. not buying from Nespresso but trying Lidl’s brand.

3) Make things instead – we always try to make our presents, this year more than ever for Christmas. Its also fun and means we can hopefully wean ourselves off of our Amazon Prime subscription and spend more time together. I’m not posting pictures here incase I ruin any surprises, but I promise a tutorial soon. In the meantime this is my ‘to make’ board

Fingers crossed we can do it.

I’ve emerged from a 3 hour nap…

Right lets turn this black mood around. This weekend I had a lovely visit from my mum. We went to the seaside on crutches and I had a couple of hours of fresh air and sunshine. We watched the Vulcan take its last flight over the Britain, drank ale (which made me feel sick combined with the meds), ate fish and chips and ice cream. Looking down the coastal path I remembered how I loved riding my bike along the shore. My wise mum said ‘why don’t you make it a goal for in a year?’

So here it is… ‘on the 11th October 2016 I want to get back on my bike and be able to ride it down the road pain free.’

Me and my treasured bike in 2015
Ice Cream from Sundae Sundae

Beers in the Black Dog

Plane spotting on Tankerton Slopes.
Other Spoonies what would your 12 month goal be?