Tuesday, 29 April 2014

Blue Ribbons

In my experience it isn't all that easy to get hold of M.E. Awareness blue ribbons. You can buy ribbons of the same colour for colon cancer or child abuse, for example, but other than BRAME I haven't had much luck in finding any for CFS/ME. 

Blue ribbons for M.E. Awareness. I wear mine all year round!
So I bought the materials online to make my own. I couldn't have attempted such a thing 12 months ago so it shows how there has been some improvement in my health. 

If you would like me to send you one please message me via social media if it is easier for you. If it's not too cheeky any small donations to my JustGiving page would be very welcome. All proceeds are going to The ME Association.

 (For those of you who are coming to my house on the 11th, I've already counted you in and got a pile of blue ribbons ready and waiting just for you!)

If all goes according to plan they will be posted to you the week commencing the 5th May, in plenty of time for M.E. Awareness week. I ordered the wrong safety pins, hence the slight delay in delivery while I wait for the correct ones to arrive.

I'm afraid it'll have to be on a first come first served basis and once they're gone they're gone. If you want to make your own though the materials were fairly easy to track down via Amazon. Although make sure you buy coiless safety pins! 

Coiless safety pins. 3/4 inch.

EDIT - Second class stamps cost 50p. 50 whole pence! Each!

Friday, 18 April 2014

The Princesses and M.E.

A whole host of us are now taking part in the idea that came about when a few of us decided to take part in The Big Sleep for M.E. on Monday 12th May. I can't remember exactly how or why we decided on being princesses for the day (joking about being real life Sleeping Beauties I think) but Sian likened it to the story of the Princess and the pea, except we shall be the Princesses and M.E. Clever isn't it? 

I do not have my own fundraising page for this event as I had already decided to raise money for The ME Association again this year and didn't want to confuse you all. 

You can vote for a member of the team here, like I have done. Team Princess on JustGiving

I can only imagine that by the 12th May I will be cream crackered after Blue Sunday's charity tea parties, so bed will be the best place for me. Why not lay there in style? I have my tiara, white gloves and feather boa (because this Princess wears feather boas) at the ready. Just need to find some Princess-esque pyjamas now!

There's a Facebook page where you can get fundraising target updates and read about the experiences of my fellow Princesses. Chief Princess Sian also has a more detailed blog post.

Sunday, 13 April 2014

Chipper Tuesdays

Lipstick Tuesday has taken the world by storm. Well my little world anyway. Every week there are photos on Instagram, Twitter and Facebook from (usually) pyjama-clad ladies who've decided to join in on the fun. I hope you're enjoying it as much as we are. It has genuinely given me something to look forward to and has broken up many a mundane week.

My partner in crime (Cara) has had her thinking cap on recently with regards to Lipstick Tuesday. When she filled me in on what had been going on in that brilliant mind of hers I saw exactly where she was coming from and totally agreed. Lipstick Tuesday is too restrictive. And I'm getting lipstick all over my pillowcases! So it is being expanded to be all inclusive. To cover all bases. To be universal. 

Totally stolen from Cara and I'm not even sorry. 

Chipper Tuesdays are about wearing or doing anything that brings a smile to your face and that makes the day a bit brighter for you. I'm even thinking about digging out my old prom dresses (although I'll probably have to wear them as a scarf rather than a dress now. They've shrunk you see...*cough*.) You only really see the benefits of lipstick when you look in a mirror but if you're wearing a pair of particularly snazzy trousers, or that sequin jacket that you've been saving incase an occasion arises where you can get out of the house and wear it, you don't even need a mirror. You can see how fabulous you look just by looking down. Why save things for best?! No offence pals but when are we going to get to wear those pink suede heels we bought on a whim 'just incase'?! Wear them in bed! On Tuesdays! If I'm honest with you I tend to dress myself in whatever takes my fancy anyway. A bit like a small child does when they're first allowed to pick their own clothes. So I shall still be wearing my lipstick on Tuesdays just to differentiate between Chipper Tuesday and the rest of the week. And also because I'm just super glamorous like that. 

Chipper Tuesdays accommodates for all. Men, women, children, lipstick-loathers... Full credit goes to Cara for this one. I'm just the messenger. 

See you on Tuesday! 

Friday, 11 April 2014

One month to go

Apologies in advance if this is incoherent. The best way to describe my current state is 'sloth-like'. I might pop back and edit this later but I wanted to get in touch with you all now. 

It's now a month until the start of M.E. Awareness week which means it's a month until my charity tea party 'Blue Sunday'. Some of you may remember last years event, which was the first. (Blue Sunday 2013.) After a couple of years of illness I finally felt well enough to try and do something to raise awareness of Myalgic Encephalomyelitis. We decided a marathon was out of the question... because I no longer had a pair of decent trainers. Instead we opted for a cake sale style shindig. So my extended family and closest friends to joined me for Afternoon Tea at home.

The idea for the virtual side of the party came about because lots of my friends lived too far away or were too poorly to travel, or both. This way they could stay in their pjs and even in bed of they wanted to, and follow the tea party updates that I was posting online. 

Blue Sunday 2013. Some of the photos sent in via Facebook  
Just like last year, I have set up an events page on Facebook but I hope that this year we can expand things to include Twitter and Instagram by using the hashtag #BlueSunday. That's the plan anyway! For those who can, or want to, there is a JustGiving page for donations. All I would ask for is the price you'd expect to pay for a pot of tea and a slice of cake in your local coffee shop. 

Blue Sunday 2013. Some of the photos sent in via Facebook

Any donations are so very gratefully received and all those a who donate and attend will be entered into a prize draw. So far I have two prices and am looking for other kind souls who are willing to donate others. Last year I forked out for prizes myself but funds just won't allow that this year I'm afraid. 

Prizes kindly donated by The Pillow Fort team: Subscription to the magazine and a jar of spoons, either on a necklace of key ring 

Many of you are asking how a virtual tea party actually works. I have no idea really is the honest answer. This is only my second year of attempting it. I'm still rather poorly so it really isn't going to be an all singing all dancing extravaganza but it's an opportunity to meet new friends online, and to eat dangerous amounts of cake. What more could you want for a Sunday afternoon in May? All you need is an Internet connection and cake. Lots of cake. 

And to those who are coming to my house for Afternoon Tea that day, don't worry. I won't be doing any of the baking myself...

Tuesday, 8 April 2014

Battered & bruised but battling on

I've received so many messages of support that I thought a blog post was necessary as a way of replying to you all at once. 

It's now two day PMB (post mini breakdown) and I'm feeling quite mellow actually. Not chirpy, not sad and yet not numb. Emotions wear me out and I am quite quiet and slow and dazed. While I've been sitting and licking my wounds there have been tears of loss. Of relief. Of frustration. Of empathy for those in the same boat. Of despair. I am not myself. Not yet. My scars are emotional not physical, but those can be the ones that are hardest to heal.

Something gave way at the weekend. Like a crack in the wall of a dam that grows bigger and bigger until the wall gives way completely. And having to cancel plans to meet my friends just ten minutes before we were meant to meet was the straw that broke the camel's back, as they say. Sounds silly. It was only coffee. But it wasn't. To me it was my whole month. A token of normality. 

After publishing I cannot win I had every intention of following through with my plan to give up and sleep. I closed my blinds, turned my phone off, curled up into a ball under my duvet and shut my eyes tight. I was desperate and defeated. It was a rash decision and I know now that I would have woken up to be so disappointed in myself, even though I was well within my rights to throw in the towel like that. 

Not-so-little bro and his girlfriend saved me from myself. He came to see if there was anything he could do and to ask if his girlfriend could come up to see me because she had some flowers for me. She'd heard I was upset and stopped off to get them on her way over. The gesture made me cry again. But different tears. I was so touched. I was too proud to let her see me crying my eyes out in bed so I said I'd come back downstairs instead. I am so grateful to the two of them. Without that knock on the door I don't know if I'd have been able to pull myself back from the edge of the metaphorical cliff. I would have jumped into a world where M.E. wins and each day after that one would have been void of light and hope.

Contrary to what I said I will not give up and I hope I never do. I will not berate myself either. My 'outburst' was not weakness. We are in no way weak, us sufferers. Well physically maybe... I've been here before and I imagine I'll be here again but, just like the times before, I can reassess and rebuild myself again. I don't need to be told I'm lucky in so many ways. I know that. That wasn't what this was about; my supposed inability to see the silver linings. 

Your messages and kindness and gifts of words have not gone unnoticed, they have just left me lost for words. I haven't ever met the majority of you who I've heard from in the last couple of days, never chatted to you on the phone, never even seen a photo of you and I don't even know many of your names. But, essentially, along with my family, you have held my hand and wiped my tears and assured me that you will continue to do so for as long as I need. 

Thank you.

Sunday, 6 April 2014


I learnt a lot today.

I learnt that a human being can cry an unimaginable amount of tears.

I learnt that boys get uncomfortable when you cry.

I learnt that one simple act of kindness and thoughtfulness could save me from potentially undoing years of hard work.

I learnt that things can change, for better or worse, in a matter of minutes.

I leant that I am incredibly strong and immensely brave.

I learnt that life is unfair.

I learnt that M.E. is even more so. 

I learnt that I have too much respect for myself to give up now.

I learnt that I am incredibly lucky to feel that way.

I learnt that people cannot read minds; if I don't tell them, they will not know.

I learnt that you won't always get what you want.

I learnt that when you have M.E. this will happen a lot. 

I learnt that it's okay not to be okay.

I learnt that deep down I know that I am doing the right thing; that sensibleness was the best path to take on the road to recovery.

I learnt that most of my real friends live inside my computer.

I learnt that my soul really is unconquerable just as I'd suspected. 

I learnt that the good will always outweigh the bad.

I learnt that sometimes you have to hit rock bottom.

I learnt a lot today.

I cannot win

As I write this, I imagine my friends are all chatting and drinking coffee as we'd arranged to do this afternoon. I should be there. I had planned to be there. I had spent the last few days excited to be there. But where am I? I'm in bed. 

All I did was put on a pair of jeans, a thin t-shirt and a jumper and then flatten my hair. I did all this in silence. I applied no makeup. I hadn't even wasted any energy laying out my clothes the night before this time because that can leave me exhausted and shrink my chances of being able to actually put them on the next day. This time I went with spontaneity, if you can include pulling any old clothes out of the wardrobe spontaneity. 

And what was my reward? It wasn't getting to meet my friends for a coffee and catch up. No. It was cold sweats and increased fatigue. It was dizziness and trembling legs. It was losing the ability to use my muscles correctly and drink my morning drink without dribbling it down myself. 

I have been the model sufferer apparently. The perfect patient; treating my body with the upmost respect and tackling the rehab faultlessly. But for what? What has it done for me? 

This is the final straw. So I'm done. I've had enough. I'm throwing in the towel. I am not getting anywhere. Literally. 

And so for the first time since The Beginning I am giving up and letting myself go to bed to sleep and block it all out. Sod the rehab. Sod the retraining my brain into knowing that sleep is only for nighttime. Sod it all. 

Well done M.E. You've broken yet another person's spirit. 

Saturday, 5 April 2014

Garden Adventures

I am desperate to see myself as something other than an unemployed poorly person. I want to get into the habit of saying I'm a blogger or a baking or a knitter rather than always saying "Oh I'm not working at the moment" or lying to delivery men and telling them that I'm always at home in my pyjamas because I'm on the night shift. 

It's hard and I think it takes guts; to change the way you see yourself. Your illness restricts you in unimaginable ways and the majority of my time has to be spent surviving the illness rather than distracting myself from it with M.E-friendly activities.

If I have a couple of hours doing x y or z I have to have a few (or more) Nothing Days either side. I can't manage more than five minutes of 'doing' at a time just yet. So for every five minutes of activity, be it adding and mixing ingredients in a bowl or planting a few seeds in a tray of compost, there is a chunk of Purple Time. I don't know what the ratio would be. Perhaps for every 45 minutes, only 5 minutes are active. I'm not exaggerating. It makes you wonder whether finding a hobby is even worth it but I need it for my sanity. I hope one day I will be able to have a whole day of 'doing'.

I've tried baking (which I'm just terrible at actually), sewing (I have a sewing machine that has outwitted me), decoupage (it's early days but so far so good), reading (which depends on how 'well' I am functioning cognitively), and now I'm having a go at gardening. (I've always been a bit of a Jack of all trades (master of none.))

I cannot get enough of fresh air and being outside. And if I'm in the garden I like to think that means I'm not housebound anymore. Ever the optimist! 

Never afraid to get my hands dirty

Gardening for me involves a lot of large cushions and lying on my front pulling out teeny weeds that don't have sturdy roots. My dad then tackles the 'proper' weeds for me. I'm trying my hand a planting bulbs and replanting potted plants at the moment. This involves large cushions again and sitting in the most unusual, but comfortably, positions. No kneeling or crouching for me! It doesn't agree with me. 

Lightweight plastic trowel set, large cushions and a rest place where I can out my feet up = M.E-friendly gardening

I'm also having a go at growing my own vegetables (even though my tummy despises them at the moment.) I'm growing them in small trays and so I was able to sit at a table and plant the seeds rather than bend down to do it. I had help putting the compost in each tray because I'm too uncoordinated and weak to manage such a task myself. So far I have courgette and pepper seedlings and it is VERY exciting. I've never grown anything before and the only plant I've ever kept alive is a cactus. 

Courgettes & sunflowers
And of course no garden project would be complete without a Paint Your Own Gnome. My mum bought him for me to keep me entertained. The box said 'Requires adult supervision' but I managed it all by myself (although it took me longer than it would've taken a toddler.)