myalgic encephalomyelitis

08/06/2016

ME Awareness 2016 and fundraiser success!

It's quite a while since I've written a blog post as it was my birthday then my fundraiser so it's all been a bit manic.

I want to talk about M.E Awareness day and how proud I am of myself and Team Princess for what we achieved.


M.E Awareness day/week/month is always emotional. It's exhausting when you try to do your bit to raise awareness of this truly awful condition but when you decide to fundraise too (crazy some may say!) you know you are going to be as pooped as a pooped thing for a good while after.

Considering it was my birthday 3 days before Awareness day - the day Team Princess was doing our thing - I was already slightly wiped out before we'd even started! However, it is obviously something very important to me. I had written a status to warn people I would be posting lots on the day but to be honest if they didn't like it then tough! People who know me and know what my life is like support me (or so you would think!) so that was my thinking. Plus I would be raising as much money and awareness as I could. How can that ever be a bad thing?

The charity I chose to support is such a fantastic one so I wanted to push it as much as possible. Smile for ME, if you haven't read my previous post, send parcels of gifts to M.E sufferers and carers who have been nominated by friends or family. It is run by 2 girls who are both M.E sufferers and they rely on donations. Random acts of Kindness are a big part of my life and I love sending stuff to people, so I wanted to raise as much as I could for them to enable them to send lots of Smile parcels.


Before the event had even started I'd somehow managed to raise a big chunk of money and I very kindly received a large donation on my birthday which took me to my £300 target. It gave me a massive boost but then I panicked I wouldn't raise much more!!


My first post of the day was very personal and stated my reasons for joining Team Princess. I will share a copy of it below for you to read.  I had a lot of comments and likes, which to me was as important as raising money as it meant people had (hopefully) read what I had written.


I posted various pictures throughout the day across my social media and I couldn't keep up with the notifications of donations at one point. I was a bit overwhelmed and every single pound donated, as well as every comment or message, meant so much to me. As always, there was a bit of disappointment from some but on the whole I was blown away with people's generosity and kindness.


When my little girl came home from school she got dressed as a Princess too and we had some photos together. She loved it!



I was absolutely exhausted by evening but I was buzzing too so took a while to be able to wind down.


I also ran an auction the following weekend with prizes that had been donated by some of my favourite independent businesses. That went really well too. I really am grateful for everyone's support.

The total raised was £879.88 including gift aid. Amazing! I received some messages from Smile for ME which made my heart so happy. Knowing how much the money was going to make a real difference made me feel so fuzzy and it's the reason I pushed so much for donations. Every single person who donated I want you to know that you really have made a difference. You have helped towards putting a huge smile on a very deserving person's face. I appreciate it so much.



Team Princess managed to raise £3436.95 for various M.E charities so I couldn't be prouder. I'd like to also thank our Queenie Sian for organising everything so well and for all the support. We couldn't do it without her!

I can't stress enough what a brilliant thing it is that Smile for ME do. M.E is very isolating so receiving a parcel literally does make a huge difference to people's lives. If you wanted to make a donation to them, you can do here here.

Thank you to everyone who is there for me, who continue to support me and for all your kindness with my fundraiser. If I could give you all a big sparkly hug I would do!



Ali 
xx


10/05/2016

Auction for my fundraiser for Smile for ME

As you will know if you read my blog, I'm fundraising for the charity Smile for ME and here is my previous post with all the details.

I decided I wanted to also hold a little auction to try and raise some extra money for them, so I contacted some of my favourite businesses and I have very kindly had some brilliant prizes donated.

I will be holding the auction on my Facebook page which will start at 9am on Saturday 14th May and will end at 9pm on Sunday 15th May 2016. Bids will be accepted at any time between those hours. I will contact the winner once the auction has ended and will arrange delivery of the items as some I am sending myself but others will be sent direct from the businesses. I will post Terms & Conditions at the bottom of this post.

The following is a description of the items with a link to the lovely places who have donated them. 

1) Sausage dog print scarf from Lisa Angel.

A large ladies' lightweight fashion scarf with a repeated dachshund dog design. It is black & white print over a salmon pink background and made from 100% polyester.




2) Acrylic pins and necklace from Punkypins

You are Magical, Be Yourself and Feminist acrylic pins plus red Where Fourheart Thou necklace.




3) Voucher from Crown and Glory



This is a very special voucher as whatever the winning bid, Crown and Glory will double up on the value of it. So for example, if the winning bid is £50 the prize will be a £100 voucher! There is a whole load of stuff to choose from on the website so have a browse and I'm sure you'll see lots you like. Crown and Glory will send the voucher to the winning bidder. I have selected a few pictures from their website as examples of some of what you can buy from them.





4) Unicorn Magnet from AnnieANDBlanche

A handmade rainbow felt unicorn magnet lovingly made especially for the auction, complete with sparkly unicorn horn. It has been made using soft wool felt and embroidery thread.





5) Personalised mug from Jilly Jilly
A ceramic mug from the new Mix and Match collection which has just been launched. The winner can choose which design and name to be on the mug. You can see some of the other options here. Jilly Jilly will be sending the mug direct to the winning bidder (their packaging is beautiful!).


I have my own mug from the new range and it's really gorgeous.



6) Box of goodies from Lucky Dip Club.
Some of you may know I subscribe to Lucky Dip Club which is a monthly box of goodies. They collaborate with various artists & illustrators and there is a mix of stuff in the box that you will be bidding on.

A copy of Girl Planet which is a zine they publish each month, Mel Stringer I Donut Care print and patch, Good Morning print by Belsartworld, mini cards by Emma Margaret Illustration, Girls glitter banner by All Her Glory designs, strawbunny pin by Ponypeople, Lucky Dip Club Girl Gang pins, mini motivational pocket cards, BFF keyring kit by Samantha Eynon, mermaid notebook, Lucky Dip Club weekly planner. Wowzers!


A closer look at what's there!



I really hope you see some items you like and hopefully will see you at the auction over the weekend!

The Terms & Conditions are below. The ones for Crown & Glory and Jilly Jilly (at the bottom) are slightly different due to them sending to the winning bidder direct but the bidding process is the same for all.



TERMS AND CONDITIONS -  Princess Ali's auction for Smile for ME

Auctioneer: Alison West
Vendors: Lisa Angel, Punky Pins, Annie and Blanche and Lucky Dip Club
In aid of: Smile for ME

1. BIDDING
The auction will take place on
https://facebook.com/beingamummywithME/
Photos of the items for auction prior to the opening of the bidding with full description will be available on
beingamummywithme.blogspot.com. Bids may be placed by commenting your bid amount on the photo of the item you would like. A post with photographs of all items up for auction will go live at 9am on Saturday May 14th. Bids will be accepted at any time from 9am on Saturday 14th May until 9pm on Sunday 15th May.

2. POSTAGE CHARGES
No charge for postage or delivery of items will be made to the purchaser. The auctioneer is expected to bear the cost of onward postage direct to the successful purchaser. Due to this, UK bidders only please.

3. PAYMENT
Alison, as auctioneer, will contact the successful purchasers on Sunday 15th May, once the bidding has closed at 9pm. They will be advised the total amount to be paid. Payment may be made through BT mydonate page set up for Smile for ME. Please note payment through PayPal is not available for BT mydonate, payments are through credit or debit card only. A link to the page will be provided. Please note gift aid cannot be claimed on these payments.

4. STORAGE OF LOTS
The items for sale will remain with the auctioneer until sold.

5. VIEWING OF LOTS FOR SALE
There will be no physical viewing of items for sale. Bidders must rely solely on the description of items and photographs given by the seller/auctioneer. A catalogue of the items for auction will be available on
beingamummywithme.blogspot.com. The auctioneer does however undertake to forward any purchasers’ queries to the vendors, if there is any uncertainly about what is on offer.

6. DELIVERY OF LOTS
 All Lots to be sold will be delivered direct from the auctioneer within 10 working days of receipt of payment. The auctioneer will bear the cost of postage or delivery (unless otherwise stated) and will undertake to ensure that the item is secured packaged to avoid damage in transit.  




TERMS AND CONDITIONS -  Princess Ali's auction for Smile for ME

Auctioneer: Alison West
Vendors: Crown and Glory and Jilly Jilly
In aid of: Smile for ME

1. BIDDING
The auction will take place on
https://facebook.com/beingamummywithME/
Photos of the items for auction prior to the opening of the bidding with full description will be available on
beingamummywithme.blogspot.com. Bids may be placed by commenting your bid amount on the photo of the item you would like. A post with photographs of all items up for auction will go live at 9am on Saturday May 14th. Bids will be accepted at any time from 9am on Saturday 14th May until 9pm on Sunday 15th May.

2. POSTAGE CHARGES
No charge for postage or delivery of items will be made to the purchaser. The vendor is expected to bear the cost of onward postage direct to the successful purchaser. UK only bidders please.

3. PAYMENT
Ali, as auctioneer will contact the successful purchasers on Sunday 15th May, once the bidding has closed at 9pm. They will be advised of the total amount to be paid. Payment may be made through BT mydonate page set up for Smile for ME. Please note payment through PayPal is not available for BT mydonate, payments are through credit or debit card only. A link to the page will be provided. Please note gift aid cannot be claimed on these payments.

4. STORAGE OF LOTS
The items for sale will remain with the vendor until sold.

5. VIEWING OF LOTS FOR SALE
There will be no physical viewing of items for sale. Bidders must rely solely on the description of items and photographs given by the vendor/ auctioneer. A catalogue of the items available for auction will be able to view at
beingamummywithme.blogspot.com. The auctioneer does however undertake to forward any purchasers’ queries to the sellers, if there is any uncertainly about what is on offer.

6. DELIVERY OF LOTS
The auctioneer will notify the vendor of the details of the successful purchasers once payment has been received. All Lots to be sold will be delivered direct from the vendor within 10 working days of receipt of payment. The vendor will bear the cost of postage or delivery (unless otherwise stated) and will undertake to ensure that the item is secured packaged to avoid damage in transit.

7. CONFIRMATION OF OWNERSHIP
The vendor warrants to the Auctioneers and to the Purchaser:-
a. That she is the true owner of the Lot or is properly authorised to sell the Lot by the true owner.
b. Is able to transfer a good and marketable title to the lot free from any third party claims liens and encumbrances and that all entries on the entry form are correct.
c. That no lot is subject to any hire purchase, lease, contract hire agreement or any other finance agreement or contract.




Thank you for your support. Feel free to ask any questions in the comments.

Ali (aka Princess!)
xx

21/04/2016

38 things about me for my 38th birthday!

Yes it really is true, I am turning 38 at the beginning of May. However much I try to deny it, it is happening. Booo!

People who don't know my age usually guess at late 20's and that will do me just fine! I certainly don't feel (or act!!) my age. I did a previous blog post where I mentioned it here.

So as it's nearly my 38th birthday I thought why not tell you 38 random things about me which you may or may not already know. In no particular order let's go.....

1. I was a lawyer before M.E struck and I had to stop working

2. I have 2 middle names

3. Hardly anyone calls me by my full name and I usually get Ali or Al. Or Sparkle!

4. I used to be really really shy when I was little and people never believe me when I tell them

5. Peanut butter with jam is one of my favourite things to have on toast

6. I prefer savoury to sweet food

7. When I was little my sister pushed me into a lake and I had to walk round the rest of the place in just a Fat Willys Surf Shack t-shirt because my jeans were soaked. I  have never forgiven her

8. I love marmite

9. Glitter makes me smile lots (like you didn't already know that!)

10. I don't like boats or bridges

11. I love the sun and would like to live abroad

12. People always think I am Spanish or Italian, especially when I have a tan

13. I used to bite my nails really badly and only grew them when I was about 24

14. The sound of rain relaxes me

15. The sound of cutlery scraping on a plate makes me cringe

16. Having no fringe doesn't suit me!

17. I was a huge New Kids on the Block fan and went to 3 of their concerts. My mum came to one once and was the only one who wasn't screaming! It was at an ice rink too so was freezing. Sorry mum!

18. I had my tonsils out when I was 21

19. I don't think there is any such thing as having too much jewellery

20. Keith Lemon is my idol (not really but I'm a huge fan as you probably know already). I was lucky enough to meet him privately before one of his book signings due to not being able to queue for long because of my health. We chatted about glittery jackets and took a selfie!

21. I hate spiders

22. I have to use a wheelchair because of my M.E but I blinged it up and it looks super cool

23. One of my favourite sounds is my little girl's laugh

24. I was meant to be in a TV advert when I was about 5 but I was the only child who wouldn't stop crying so they had to pull me out

25. I did some modelling for a series of childrens' books about ballet called Scrambled Legs. I was mortified about having to wear a leotard

26. I didn't get another job after the leotard one!!

27. People who make me laugh are my favourite kind

28. I love my friends and family to bits and would be a bit lost without them

29. It makes me sad not being able to do lots of things because of my health but I'm doing well at looking at the positive rather than the negative

30. Acting silly with my daughter makes me happy. She says she likes that I'm not a boring mummy!

31. Cheese and onion Walkers crisps are my absolute favourite flavour

32. I prefer drinking from plastic cups (adorned with unicorns and such things) rather than drinking from glasses

33. I sometimes daydream about going on an American roadtrip on an old blue vintage scooter

34. I always have really vivid dreams and I sleeptalk

35. I love watching people do streetdance.

36. I'm short sighted and have astigmatism so everything is a bit blurry without my glasses

37. I love doing random acts of kindness.

38. I am fundraising for a charity called Smile for ME as part of my annual M.E fundraiser and you can donate via this link (cheeky plug!). If you fancy buying me a virtual drink for my birthday you could donate a few pounds instead and I'd be mega grateful. My previous blog post has all the information.



Thank you for making it to the end :-) Hope you enjoyed it and if anyone wants to send me glitter covered cheese and onion Walkers I'd be ever so happy!!

Ali
xx




12/04/2016

Team Princess fundraiser 2016

The time has come again for us to become Princesses on M.E Awareness day! For those of you unfamiliar with what Team Princess is, we are a group of sufferers who become Princesses for a day to raise awareness and money for M.E charities.  We have raised over £10,000 so far for UK & Australian charities and have funded research and drug trials as well as supporting various services the charities have to offer people.

Me and my mini Princess last year 

Our founder and official Queenie Sian, who blogs over at Me, myself and M.E came up with the idea a few years ago. She wanted to raise awareness as well as fundraise but she also wanted to celebrate some of the people who display different qualities which in her eyes make them true Princesses. Being brave, strong and having courage to name a few. For being there for each other despite all suffering. Spoonie sisters we like to refer to it as.

Sian has written a very informative blog post with all the information and details of how to join Team Princess which you can find here.

This year, despite my illness and all it brings, I decided I wanted to try to be more positive. I have surprised myself with how I've managed and every night I have written something good from the day in a diary. It has made me realise that even on the worst days, for whatever reason, there is still always something good no matter how small. Which kind of leads me into the charity I have chosen to support this year...

Those of you who know me will know how much I love a Random Act of Kindness (RAOK)! I really enjoy sending people things and knowing it has made them smile is the nicest feeling.

So, I am excited to announce that the charity I am hoping to raise lots of money for is Smile for ME. It is a fantastic charity run by two lovely ladies, Alice and Gracey, who are both poorly themselves. They send personalised presents to sufferers or carers who have been nominated by someone for a smile. I have nominated friends through them previously and all I'll say is that it was emotional when they received their parcels!


M.E can be a very isolating and debilitating illness so to receive something lovely and unexpected can make a huge difference and give you a massive boost. I would love to be able to raise enough money to send lots and lots of Smile packages! If you wanted to nominate someone you can complete the nomination form.

Of course on May 12th I will be dressing as a Princess so will be sharing photos and information on my social media. However if you want to donate now, my fundraising page is HERE!

I have a Facebook page for my blog here which if you follow you will be able to keep up to date with stuff. I will also be holding an auction on or around the day and have some fab prizes which have kindly been donated by some of my favourite independent businesses. I will provide details shortly! The Team Princess Facebook page will have lots of information about the event so please give us a like to be kept in the loop. The team JustGiving page is here.

I have had a lot of amazing support in the previous two years so I am really excited about this one! Thank you in advance for donating and supporting me. This illness is really difficult to live with so if I can help make fellow sufferers smile then I'll be happy.

For more information about what M.E is and how it affects me, please see some of my previous posts What is M.E?, Diagnosis & remembering life before M.E, (In)visible, A day in the life of ME!

Thank you for getting to the end as I know it's a long one!



Ali
xx

15/11/2015

Makeup and products I use to try to disguise my dark circles!

Let's talk about make-up!  For as long as I can remember I have loved the stuff. Back in the 90's (when I thought I was really cool but I really wasn't), I rocked the good old frosted lipstick & probably looked as orange as an actual orange with all the Rimmel bronzer I used to slap on. We all thought we looked so good too...

Fast forward a few decades (eeeek) & I still love it as much, although I now have some idea how to apply it. And there's not a frosted lipstick in sight.

Another reason I love make up so much is because as a poorly person, it has become my best friend in helping me disguise my 'very scary, chronically ill' face.  Although I have an "invisible illness" I don't think it is actually always that invisible. I blogged previously about that here.

Image from Pinterest

When I get up in a morning & look in the mirror I always think "URGH". I look pretty poorly. It's obvious I'm not well. Pale face, despite the rest of me having an olive tone and horrible dark circles under my eyes. That's my biggest problem area which is why I have come to rely on concealer. I look really grey sometimes too which is a big giveaway that there's something wrong!

I don't wear make-up every day. When I first became poorly (many years ago now) & had to stop work, I was pretty much bedbound for a year & practically lived in my pyjamas.  So now, I try to get dressed each day at some point as it takes me right back to those dark dark days if I don't. It definitely helps mentally. I also feel better with a bit of make-up on, but it wears me out so much doing it that unless I'm going out I tend to not put much on whilst just in the house. Just enough to make me feel less gross! I love putting it on though, so if I am going somewhere & feel able I will just take my time with it.

I start by applying some Garnier BB Cream which I find really nice on the skin. It doesn't give mega heavy coverage but it works well & does a fairly good job at evening out my skin. I used to always buy the normal version & found my skin was always so greasy, so now I get the one for combination to oily skin in medium.


I apply it with a Real Techniques buffing brush, which has become my number 1 favourite thing! I don't know how I coped before I had one as they make your make-up so much easier to apply & give such a lovely finish. The Real Techniques Core Collection  is a really good set which has 4 starter brushes in (including the buffing brush) & I would definitely recommend it if you fancy trying some brushes.


I then add my concealer & my favourite at the moment is the Collection Lasting Perfection concealer. I watch make-up tutorials on YouTube & everyone always raves about it. It only costs about £4 too. I have shades 2 & 3 but I find 2 the best for my skin tone, although the palest one is probably one I need too.

Top left before concealer. Top right during (I apply wherever needs it).
Bottom left on 1 eye. Bottom right on both eyes .

I then set it with some mattifying powder & put some bronzer on. I use the Body Shop honey bronze bronzing powder at the moment as it isn't too orange & you can build it up. I used to put bronzer all over my face but now I know you don't need to!! Just apply on places that naturally catch the sun.



Something I think makes a huge difference to how you look is blusher. Blusher reminds me of my grandma as I always raided her make up stash when I was little & she had the Max Factor powders & blushers. Or rouge as she called it :) I have a few different ones but at the moment I'm using a baked one by Makeup Revolution. It's really pigmented & I think a shade that would suit all skin tones... here.

One major thing that I think opens your eyes a lot is black eyeliner & mascara. If I can't be bothered with proper make up I always put a bit of liner under my bottom lash line. It makes them look so much bigger! I also have a Rimmel ScandalEyes waterproof Kohl Liner in Nude which I sometimes put on the inside corner of my eyes & my waterline. Once it's on it well & truly stays on!



Finally, lipstick. It changes your whole face. I never used to think it suited me so wore gloss for years, but I have a rather large lipstick collection now! You can't go wrong with a classic red lip & I have so many that I can't pick a favourite. This one is by Collection & it is really pigmented.


I have lots of other make up & I use various different things depending on how I feel, but this tends to be the typical look I do. I seem to do more of a natural eye more often than colour as it is easier, but I am not afraid of being daring. I also stick to a natural lip if I wear colour on my eyes. I did some smoky eyes recently which I don't often do but I really liked how they looked. I put Rimmel Exaggerate lipliner in Eastend-Snob on my lips which is a beauty blogger iconic product & goes with everything!


Before I go (I know it has been long, sorry!) I'm just wondering if you saw these pictures of me without me saying I was poorly would you know? Do I look ill? Would you know I spent the majority of the time with crippling exhaustion and pain? The answer is likely no!

People are so quick to judge regarding how you look. I get it all the time when I am out. The stares because I am in a wheelchair. The tuts when I park in a disabled space. It gets right on my nerves so please please don't judge or pass comment without thinking first. That is all I will say now as I've ranted lots about it before!!

Thank you make-up for helping me look slightly less zombie like :-) If you fancy a giggle have a look at when my little girl did my make up here!!




Ali 
xx

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