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.

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!

Pulled apart

Some days you feel like you are made of broken pieces and more drops off.

On days like this I don't have words.

So here are some better ones than I have.

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?

Enough is enough

Today is a proper swallowed up, useless to the world, black dog non existent day. Cancel the world I'll be back next week once I've stopped the self pity.

Mouth Ulcer 101 - Warning contains picture of ulcers

Everything you need to know about mouth ulcers! Well 11 tips as I don't think I could write 101!

When I get mouth ulcers, which is a permanent thing, they are epic. They range from blisters and painful lumps to open bleeding sores. As well as coating my mouth in every part I also get them as sores in my eyes and nose and elsewhere. I regularly get them on my lips on the outside and these take forever to heal and bleed due to cracking. My record is 27 that I can count on one go. They are a big signifier that lupus is active. My taste completely changes when I have them and I feel constantly dehydrated. Sometimes when they are in my throat it swells and seems to affect my hearing and gives me earache. Just to really help with the humiliation I've added some funny photos for you to look at :)

 

So as a bit of an expert I want to share what works for me and hope you share your tips back.

1) Keep hydrated. If you can't eat you need to keep you fluids up. Ice lollies and also great for this.

2) Difflam is the only form of pain relief that works for me. The amount of times I've been asked if I've tried bongela is a joke. For one maybe but for chronic and extreme ulcers nothing works like Difflam. The mouth wash is best as you can get it everywhere with a swish and a gargle. It is pricey at around £12 a bottle so get it on prescription if you can. I also steer clear of corsodyl as I find the benefits don't outweigh the stained teeth and ruined taste buds.

3) Everyone has a home remedy including salt or vinegar. Argggghhhhhh the thought. For years I haven't been able to eat walkers salt and vinegar crisps. Just the thought of eating them makes my mouth blister. I'm sure these remedies may work for some but I'm in enough pain as it is thank you!

4) Talking of foods stay well away from sugar. It always seems that when I've binged on the stuff the ulcers quickly follow. As yet I'm not sure if it's aggravating the skin of my mouth or triggering lupus. But trust me, stay clear.

5) Whenever I've brushed my teeth in front of someone they always comment on how little toothpaste I use. This is because it literally burns my mouth and it erupts in blisters. I few years ago whilst on a visit to maxillo facial, I was told by a consultant that lauryl sodium sulfate (essentially soap and the thing that makes toothpaste foam) is considered a trigger. Look for a kinder toothpaste. I now only use an American brand called squiggle. It can be found here.

6) Keep up with forums, advise and other websites. Generally people who experience these things are the best experts.I quite like http://www.mouthulcers.org/ and they have a shop.

7) Avoid acidic foods they burn, burn, burn

8) Rest, they are a sign that somethings not quite right whether run down or stressed, try and take it easy.

9) Medication. Hmmm so this is a tricky one. I've probably had every type of meds over the years and not many really work.  There was a time when you could get little pink steroid tablets that dissolve in water and are used as a mouth wash, but they seem to have disappeared. The only time I am clear is when taking Prednisolone in high doses, maybe this is because it also controls the lupus. When I was on Methotrexate for Lupus it also causes them so I took a lot of folic acid and vitamin B which seems to ease it.

10) Embrace the pout. This photo was taken in a huge flare up and with mega ulcers. I had to grin and bear it as I was Bridesmaid at my Best-friend's. A bit of very carefully applied lippy meant I had a super pout for free!

11) Let people know and ask for help. Yes mouth ulcers are not life threatening but they can be excruciating and debilitating. You may not be able to speak properly or for long without pain, and phone calls are impossible. Let them know about foods too.





So there it is, I hope this advice can help someone somewhere xx

If I had a pound for every hospital visit I'd be rich

Honestly I would. It's a full time job managing all the appointments. Let alone remembering all the forms and meds. Then there's the checking up when it goes wrong. 

Today's were back to back. An MRI scan at 7.10pm on a Sunday (I was shocked by this one) followed by a procedure with gastroenterology today. I forgot details both times and got berated by the nurses. I understand they've provided me with all of the details in the reams of paper, handouts and leaflets but sometimes I get muddled up. 

This time the MRI was a 45 minute car drive, followed by getting lost in the hospital and an argument. We arrived on time at 7.10pm for the appointment to be told I should have been there at 7 and be early for my appointment. Oops. Then when I mentioned they'd overlapped procedures and I was supposed to be drinking moviprep at 7pm and would I get out quick I had my head bitten off. Maybe the nurse had had a tough day, I get it but I also am anxious about procedures and not exactly having a ball! As the nurse put my headphones on I couldn't stop tears leaking from my face. I lay in the 'rave cave' with magnetic hammers banging, ugly pop tunes funnelled into my ears, watching the strange led lights change colour and sobbed. I full on let out some of the built up pain all whilst staying absolutely still in case I messed up a picture.

Then today I was on the other side, a bmi hospital (referred through the Nhs) no medical insurance would touch me. I can't fault their service and tacky hotel style private rooms. I guess you get what you pay for and the staff are less hassled.

So it turns out my knee is now considered 'urgent' I was referred back in May for a botched operation last November. Full of fluid after a full sinovectomy  and a completely displaced knee cap. The bones in the joint are showing trauma and are bruised. For someone who apparently has lupus 'under control' it's sure is playing up. On the up it looks like the other problems are just a lot of ibs.

I'm sure this is fascinating for all!