Happy when skies are grey

My daughter makes me feel proud. Proud of myself for what I have achieved & proud of her for the person she is.  She's definitely no angel & is a typical (5 year old) girl who loves a tantrum!  But, she's my little superstar.  She's my world.  She makes me happy when skies are grey.  Our song is You Are My Sunshine & we sing it together on an evening before she goes to sleep.  We have a funny little bit we do together at one point, it makes it all the more special.

Being a mummy is so rewarding.  It is really tough too especially with chronic illness. M.E makes everything so much more difficult but I cannot imagine life without her.  She understands I'm poorly & helps me with little things that children shouldn't really have to do but it's all she's really known.  Yesterday she helped me get in the shower "so you don't fall mummy" she said.
This morning she took an empty bowl from the side of my bed downstairs for me, not sure if she was after something ;-) but it was very sweet.

On days when I feel like absolute rubbish & don't think I will be able to crack a smile, she will just give me a cuddle or pull one of her crazy faces! She has a way of making me laugh & without her I don't know what I'd do sometimes. She rubs my legs too when they are bad...can't complain at that!

I was talking to her today about me not being able to take her lots of places & saying how we have fun though at home playing games & doing crafts & stuff.  She said that was her favourite thing to do.  Love her so much.

I haven't seen her much today & miss her loads.  She's staying at her grandparents so we didn't get chance to sing our song.  We will just sing it twice tomorrow & I'll make sure I get extra cuddles :-)

ME Mummy A
xx

Fundraiser done, proud!

It's six days since we did our fabulous fundraiser.  Six days since M.E Awareness Day.  It has taken until now for me to recover & get back to what I class as normal for me!

The morning of the event I felt rough. Hadn't slept great (just for a change!) & I could have done with going back to sleep. But that was not an option!!  I got myself ready & transformed into a Princess....

It's crazy how when you have M.E it takes it out of you just doing the simplest of things. All I had done was get dressed, put some make up on & donned my wig which probably took the longest ;-) yet I was shattered. What a good job we were raising money from our sickbeds & not having to go out!  I tried to rest but was very involved in online interaction which took it out of me too.

I had already raised a few hundred pounds which was amazing, but I started getting notifications of more money being donated. I was slightly overwhelmed & felt very emotional.

Seeing my fellow Team Princesses looking beautiful (especially
Princess Allan who had gone all out in his efforts!) made me so proud.  Here we were, poorly people doing our bit to raise as much money & awareness for this nasty condition we have been made to live with.

As the day went on I became more & more exhausted.  You can tell with my eyes the worse I get as they go really dark & I go a lovely greyish colour!

But I had my mini Team Princess mascot coming home from school to dress up with me.  She was really excited & I got all emotional all over again.  For about the 57th time that day!

I had some really touching messages & comments on my JustGiving page.  The following are just a few.

"Just want to say what a fantastic thing you're doing & I have learnt so much from reading your blogs".

"I had heard of M.E but didn't really know much about it. Your blogs move me to tears".

"I never knew you had it & I was so uneducated on M.E.  You're doing something amazing by making people aware".

"Fantastic work. You have increased awareness & raised money for a worthy cause".

People's generosity & kindness was unbelievable. By late afternoon I was absolutely wrecked & had to call it a day.  I had a soak in the bath & went to bed! When I woke up the next day I had managed to raise a staggering £640!! And as I write this we have as a team raised over £4000! So so proud I can't even explain.

We hope it helps towards finding a cure.   To live with M.E is like living with a constant hell around you.  It ruins lives.  It ruins us.

I would like to thank every single person who has donated, liked or shared Facebook & Twitter posts & people who have read & shared my blog.  It means so much to me.  I feel like I am helping a tiny bit in helping people understand.

Lots of love
ME Mummy A xx

M.E Awareness Week #may12blogbomb

So today, May 11th, is the start of M.E Awareness Week which means our Princess Day is nearly here.  We have all been working hard at raising as much money as possible & preparing for becoming Princesses.  All whilst being poorly.

I am suffering as it was my birthday a few days ago so the Payback has well & truly got me! But I am looking forward to dressing up & donning a few sparkly accessories.

Apart from raising money it is just as important to raise awareness of this horrible condtion.   A lot of people still don't realise how debilitating it is so by doing various events, us sufferers hope to raise as much awareness as possible.

Fundraising has been kicked off today by the very lovely Anna at M.E Myself & I blog who started an event known as #BlueSunday.  She has held both a real life & virtual Tea Party to raise money for The M.E Association.  Lots of us joined in with the event, not that we need an excuse for tea & cake!

Blue is M.E Awareness colour so some of us have turned ourselves blue with a little help from some clever photo editing ;-) There is a JustGiving page dedicated to it called Turn Yourself Blue for M.E.  They also have a Facebook page here

 

There are various other events going on throughout the day & the sole aim is to raise as much money as possible.  

I am rather looking forward to becoming a Princess, I mean who wouldn't want to be one? :-)  My daughter is one of our #teamprincess mini mascots & she will be dressing up once she is home from school. She has an important job on Wednesday as she is drawing the winner for one of our prizes, the e.l.f cosmetics £50 bundle! Everyone who has donated has a chance of winning prizes. All the details are here on a previous blog post.

There is also something happening on Awareness Day for bloggers called #may12blogbomb which this post will be a part of.  Again, to raise as much awareness as possible.

Some great blogs by fellow M.E sufferers are definitely worth a read.

Anna at M.E Myself and I
Sian at Me, Myself and M.E
Charlotte at Info Freak
Aly at There's No Such Thing As Perfect
Hayley at Life, Love & Fighting M.E
Meg at Meg Says
Allan at I Could Be Wrong


If you want to donate to my JustGiving you can either text the code PALI50 to 70070 or visit my page at www.justgiving.com/AlisonWest33

Thank you for reading & for all the support :-) xx

(In)visible!

I have been thinking about how difficult it is having an invisible illness.  For a lot of people, unless they can see something obviously & physically wrong with someone, then they don't understand how you can be ill or disabled.

For example, I have had many a dirty look from people when I park in a disabled parking space without having my wheelchair (but with my disabled badge!) & get out the car.  I can walk a tiny bit.. so I must be a fraud!!! It winds me up & I have been known to lose my temper when I've experienced tutting or eyes rolling from ignorant people.  I have also been known to say sarcastic comments too!  Interestingly, the majority of people I have seen this sort of this behaviour from have been elderly.

The problem with invisible illness is that you may look "well" yet you feel far from well.  Everything hurts.  It is an effort doing the smallest of things.  I am good at disguising my pasty white face & dark eyes. Make up is my friend!

We went out for a meal a few nights ago with some friends & I put my face on!  I tried my  best to cover my dark circles but I could still see them.

We had a really nice night but I knew I'd suffer for it.  Payback is wonderful!  Not long after getting home I started aching. Palpitations kicked in.  I took hours to get to sleep.  I woke up the next day feeling like that double decker bus had got me again.  I took a picture while I was in bed, where I spent the majority of in day.  This is my M.E face!  The 'day after the night before' face!

However, it was worth going out & actually feeling normal. We have to try living a bit rather than just existing.  I hide away in the days after when I look like a junkie!  And then I reappear when it isn't quite so bad.

So please do not judge or assume people are OK when you don't know how they are suffering.  Someone may look fine but it's what's going on on the inside that you can't see xx