Fundraiser & why it is so inportant

This morning my daughter told me that she wants me to be better so I can go places with her.  That statement alone proves why needing a cure for M.E is so important.  It breaks my heart but what can I do?  I have no choice but to keep going.

Who wants to live (exist) like this? Who would choose to be robbed of their life & be completely restricted in everything they do?
It is such a debilitating condtion, yet there is still so much lack of understanding & ignorance towards it. "Oh, M.E is when you are tired all the time isn't it" "Oh you are so lucky not having to work" "Oh you look really well". NO NO NO.

Our fundraising event came about when a group of us M.E sufferers who met on Twitter joked about being real life Sleeping Beauties.  From there we decided it would be good to try & raise some money for research into M.E on M.E Awarenees Day, 12th May.  We can't do sponsored walks, can't skydive, can't do anything involving physical activities but what we can do & excel in is sleeping/resting!

So we are becoming princesses for the day, we have a few men too in Team Princess! I'm sure they are secretly looking forward to it as much as us ladies ;-)  We will be dressing as princesses & raising money from our sickbeds so to speak.

We have already been bowled over by people's generosity.   As well as friends & family, the kindness of people we haven't seen for years & even strangers has been amazing.

Anyone who donates is entered into a prize draw to win a £50 bundle of goodies from e.l.f cosmetics, a fabulous Hugbox, some old fashioned sweeties which a lovely friend of mine has donated and some spoonie (chronic illness sufferer) prizes from The Pillow Fort

The fundraiser is part of an event called The Big Sleep for M.E http://www.thebigsleepforme.com/  The event is inclusive of all sufferers & is to raise awareness of the condition as well as fund valuable biomedical research.  All money raised is going to Invest in ME here
All we want is a cure.

We have already hit our target of £2000 but want to raise as much as possible.  If you want to help us please donate either via our team page where you can sponsor any princess taking part
http://www.justgiving.com/teams/meprincesses

or my JustGiving page is https://www.justgiving.com/AlisonWest33/

I would like to thank everyone who has supported me so far by donating.  It means so much to me.  If my daughter's wish of wanting me to be better could come true then I don't think I need to tell you how that would make me feel.

ME Mummy A xx

Diagnosis & remembering life before M.E

I try not to dwell too much on how I was before I got ill but it is very hard not to think about it.  The amount of times I have thought "I used to do this or do that"...but it really gets me down.  You grieve the life you used to have, the old you.

Before I got ill I was a "normal" 20 something.  I was a qualified Legal Executive which had taken several years studying law to qualify for.  I had a good job working for the Legal Department at the West Yorkshire Passenger Transport Executive.   Amongst other things, I took people to court for non payment of school travel fees (booooooo I hear you say!), I dealt with people who had accidents at bus stations & enjoyed watching the CCTV to see how different the incident was to what they had alleged had happened!  I dealt with people who smashed into bus shelters, bet you would never guess the cost of a new one.. they ain't cheap!!

I had a good social life, I went to the gym 3 times a week & I basically had the sort of life that most people my age would be expected to have.

Things changed when one of my friends was diagnosed with a rare form of kidney cancer in 2002.  She was so young & yet so brave during her treatment.   She lost all her beautiful long hair but still looked gorgeous wearing headscarves :) She was in & out of hospital after picking up various infections in between her chemo.  I would visit her in hospital & chat about all the usual stuff, then break down as soon as I left.  It was heartbreaking seeing her so frail.

I will never forget my birthday that year. I had found out through another friend that morning that the cancer had spread to her lung.  But she rang me while I was at work & sang Happy Birthday to me, the whole time I had tears rolling down my face.  She didn't mention the cancer as I later found out she didn't want to ruin my birthday.

I am sat crying now thinking about this, the day I found out she had died.  Exactly a year to the day of her getting diagnosed.  I had dreamt about it that night & knew when I woke up that it had happened.   I had several missed calls on my phone from friends but I already knew what the messages were.  Her funeral was horrendous.  She was 26.  Taken far too young.

Her death hit me really hard & I was quite badly affected by it.  A few months later we had a family wedding in the Dominican Republic & I had to take malaria tablets.  I seemed to have a reaction to them & started feeling really strange & spaced out during the holiday.  I couldn't even make it through the meal at the wedding as I felt so exhausted & had to go to bed instead.

I never felt right again after that.  The months following I became a constant pest at my doctors.  I was convinced something serious was wrong with me as I used to come in from work, sleep a few hours, go to the gym & feel totally exhausted but I couldn't understand why.  I was getting the most horrific headaches & started freaking out about having a brain tumour.

It became a bit of a joke at work as I was constantly knackered.   I kept going to the doctors & they did various blood tests.  I was checked for anaemia, thyroid problems, leukaemia amongst other stuff. All fine.  It was then after several months of symptoms that it was suggested I may have M.E.  What the hell is that I thought?

I was referred to the ME/CFS clinic in Leeds & saw Dr Stanley who was the specialist at the time.  Then I was diagnosed in March 2003.

I did not really understand it so kept pushing myself to work or to do social things depsite feeling shocking for doing it. I didn't want my life to be different.  In hindsight, it was the worst thing to have done.  I didn't listen to my body & tried pushing through it.  Until I eventually crashed.  Badly.  And became so poorly that I was pretty much housebound & bedbound for a year.  Constant pressure from work about when I was going back.  Realisation that I really wasn't getting better hit me so hard & I hated what it had done to me.

I wanted the old me back but that wasn't happening.   My life had changed for good. My M.E was caused by the trauma of my friend dying & the malaria tablets seemed to bring out the symptoms.  11 years on & I wish more than anything I had a magic wand to take it all away.

Hardest Job?

I have spent the majority of the week laid up in bed totally wrecked after my daughter's party & have been thinking a lot about being a (good) parent.  And about the extra problems people with chronic ilness have to endure.

"They" (whoever they is) say that being a parent is the hardest job in the world. Some people will disagree!  Being a parent IS really difficult.  You are 100% responsible for your child/ren & never get time off when the day has ended or in the holidays. You don't get any training for it & you never know what is round the corner.  But it is what comes with being a parent. However, being a parent & having an illness brings a whole load of added difficulties.

I have been talking to some fellow M.E sufferers recently, who are also parents, about the restrictions we have regarding the things we can do with our children. We have a lot of anger & guilt towards the stuff the condition stops us from doing with them.  But instead of focusing on the stuff we CANNOT do, which is a lot, I want to talk about the things we CAN do. Or the things I have been able to do at least.

From my daughter being a baby, I have always read books to her.  She has always loved being read to & I think it helped with how bright she is & what a good range of vocabulary she has!  She also has a very good memory & when she has seen or heard something once she never forgets. We always read at bedtime before she goes to sleep & that started from an early age.  As well as it being part of her bedtime routine I look forward to snuggling up with her for stories!  She actually asked tonight if she could read one book to me & asked if I would do the other & said it was so I didn't get too tired. She is so sweet!

Another thing we have always enjoyed doing is craft stuff.  We both lie on the floor surrounded by sparkly stuff & she will spend ages making stuff or sticking (kids love stickers!).  Playdough is another thing she's always enjoyed & recently since I started making bracelets she likes to make them too!  She has her own stash of beads but likes to look at mine!!

We play a lot of board games.  Some of the old favourites like Snakes & Ladders or Guess Who.  We have a fair few Orchard Toys games which are brilliant.  They are educational as well as fun & she loves them. She will also happily play with a pack of cards..she actually got some in a party bag today & we sat playing various stuff for ages.  I couldn't believe I was sat playing cards with my 5 year old!  Albeit one of the games was snap ;-)

She also loves me to paint her nails.  I have a bit of an obsession with nail polish so am more than happy to do it for her! She loves rummaging through all the colours & usually wants glitter on them too.   She definitely takes after her mummy in that respect!

Now she is older she is a lot more independent & doesn't need us with her the whole time.  She will happily play in her bedroom or with her toys/dolls but I don't like leaving her for long so usually join her & she gets me involved in whatever she is doing!  Her imagination is brilliant & she amazes me with the stuff she comes out with sometimes!

Of course we watch films or kids tv.  And I don't think as parents anyone should feel bad for letting them do that, as long as it isn't all the time.  I recently got a tablet & she loves playing games on it.  Some of the ones she likes are educational, some are just fun ones, but I do limit her time on it & never let her go on it for too long.

So that is the sort of stuff we do.  And I know she enjoys it as much as when she goes out doing other stuff.  Doesn't stop my guilt about not being able to but it's what I can manage so I know I shouldn't beat myself up about it!

Payback

I've been lying in bed for hours desperately needing sleep but unable to do so because of the horrendous pain in my legs. Twitching, restlessness, almost like someone is running a knife up & down constantly.  So here I am!  And all because I was on my feet more than I should have been because it was party day.

The morning was about making sandwiches & putting all the food together.  I didn't do it though, needed to try & save my tiny bit of energy.  How useless does that make me feel?  Can't make sandwiches becuase it will wipe me out too much!  But to be honest, I can cope with not buttering what seemed like 100 slices of bread.

I used my little energy to put some make up on & try to disguise the dark circles under my eyes!  And to make myself look, & feel, better.  Amazing how a mask of make up makes you (or me anyway) feel.  It doesn't necessarily make me look brilliant but if it helps me feel better than can't really complain.   All thanks to www.eyeslipsface.co.uk whose products I use!

Everything was ready to go & party princess was ready to party!  Went to the hall & set stuff up.  We had very girly, princessy things to do.  Nails (my forte!) face paints, lucky dip, guess the name of the princess and various games.  They all loved it.

I tried to stay sitting down which I had to do whilst painting nails, but was up & down a fair bit.  Despite my mum telling my to sit down & she was right.  I can be stubborn though!

Successful party, lots of lovely princesses & one happy extra special birthday Princess. Makes all the pain & the way I am feeling worth it.

A big thank you to all my family & friends who helped out.  Also people I've not known very long have been so supportive & kind.  I am very grateful for those friendships.

I have been told by 3 different people this weekend that I am a supermum.  I don't agree but it makes me feel very emotional.  I will be hidden away now for several days while the payback well & truly hits me. There will no doubt be tears.  It won't be pretty!  But no parties for another year!

Party time..but struggling

I am writing this whilst having a really really bad day.  I have been in bed the majority of the day as my whole body hurts. I have the most horrific fatigue, it feels like I've been hit by a bus then a train too for good measure.  I haven't even managed to get dressed & it is evening which must mean it's one of my worst days as I usually make sure I get dressed.

It is my daughter's 5th birthday party tomorrow though.  Which means I have to be ok.  No question about it.  Whatever my body is doing I have to be there.  And I want to be there.  I know I will suffer badly from it but I don't have a choice.  I have missed out on too much over the years.  Plus I am looking forward to it.

We (possibly crazily) decided to do the party ourselves.  A princess one for 25 girls! So the planning has had to be done over several weeks.  Months in fact.  This week has consisted of wrapping pass the parcel, putting together party bags including bracelets that I have made, princess ones, which I've been doing over the last few months.  I started making bracelets last year, when my daugter started school as something to do when I feel upto it & I love it.

We have various fun things for them to do and family & friends are helping. One of my carers is coming in the morning to help prepare food & is coming with to the party too.  Several friends have offered to help also which is really lovely.

People will see me tomorrow, make up on, running on adrenalin, looking no doubt fine & the ones who don't know I am ill will have no idea.  They won't see me in the days after the party when I am crashed out in bed unable to do anything except lie still dosed up with painkillers.  That is one thing I still find really difficult, even after so long. The post extertional malaise (PEM).  The way we pay so much for doing the most "normal" of things.  The things that non poorly people take for granted.  I used to too before I became ill & would never have imagined my life would be like this.

So for now it is back to resting & hoping my princess has an amazing party.