12/05/2017

M.E Awareness Day 2017

I would never have imagined my life as it is now.  If you'd told me I'd be unable to work and unable to do anything without it making me wiped out; If you'd said I would need to use mobility aids to get around I'd have laughed and told you "nah mate".  I'd say that I had spent years studying law, I had a job I enjoyed and a great social life, as well as going to the gym 3 times a week so how could that be possible?

I'm the person who used to be so independent, who thought nothing of coming home from a full day's work and going in the gym for another few hours.  The person who used to go shopping on a weekend and spend several hours just wandering round the shops. The person who went out to the pub, to the cinema, to anywhere that involved doing "normal things" without giving it a second thought.  I was enjoying life.

It couldn't be any further from my life now.  Fourteen years later I am still often in disbelief about it and would change it in a heartbeat if I could.

I have talked lots before about what it is like having M.E (myalgic encephalomyelitis) but in a nutshell it's like having THE worse hangover along with flu and your head having been kicked in. All at the same time.  That's what it's like for me anyway.

If you think of a full battery - that's healthy people.  Think of an almost empty one and that's me. Every little thing I do eats into my battery and leaves my already low energy levels almost non existent.  Resting happens a lot, yet it doesn't really top my energy supplies up so I'm pretty much running on empty.  Drained all the time and feeling horrible.  I've not even mentioned the pain and all the other fun (not) symptoms like memory and concentration problems, muscle weakness, sleep problems, post exertional malaise  (PEM) after anything we do. The list goes on and I really wouldn't wish it on anyone.

Do you know what though? I'm not amazing or inspirational or any of the things people tell me I am.  I am just me.  Me who was dealt a shitty card and had to deal with it.  I have to grin and bear it.  I don't have a choice.  I can't even begin to explain how horrendous living with this illness is yet I have to keep going and be as good a mum as I can to my daughter, who gives me purpose and keeps me smiling.

It's M.E Awareness day today so I felt I should do a post and talk a bit about it.  The reason I started my blog was because I often had people ask me what it was like being a mummy with M.E and I was surprised how cathartic I found it when I wrote. I receive messages from people telling me they have learnt a lot from my posts and that I've helped them understand more which means a lot as raising awareness has always been important to me.

I often look "well" when I am out and then I always wonder what people would think if they saw me in the following days when I'm suffering. When I'm hidden away in bed unable to move. I've had friends cry on me before when they've seen me so poorly but it's made them more aware, so silver linings and all that!

I think that's enough from me but if you've read this then thank you and I am always happy to answer questions so feel free to leave a comment or contact me via my email.

Thinking of everyone affected by this evil illness and hugs to everyone who supports me as it really does mean so much.


M.E Awareness ribbons made by me!


Ali 
xx 

07/05/2017

My girl is 8!

I didn't realise it was so long since I had posted, so apologies for that! I've either been having too much fun or my head hasn't been in the game.  I'd like to say it's the former but unfortunately not!!  So here I (finally) am and quite a lot of stuff has happened over the last month so I'll talk about my favourite thing.. my little Miss' 8th birthday!  I say it every year but where on earth does the time go?  I'm so proud of the kind, thoughtful and hilariously funny girl she's turned into.


She had a cupcake decorating party the week before her birthday, which happened to be Mother's day too. It was at our favourite vintage café with our favourite cake lady (thanks Becks!) and they all seemed to enjoy it.


I had forgotten how much noise a group of girls make too!!  They seemed so grown up which I guess, at 8, they are! Little ladies :-)




Her actual birthday was on a school day and she had Brownies that evening too, but we managed to make time for opening presents and cake of course!


It just doesn't seem 8 years since she was born.  She gets funnier all the time.  She always has an answer to everything and has a knack for one liners.  Last week when I told her she needed to sort her bedroom out, her response within about two seconds was "no offence but you need to sort yours out"!!  I just burst out laughing and I really do struggle sometimes to keep a straight face with the stuff she says.

I am one proud mummy and I love her to absolute bits.  She makes me smile, she makes my heart happy and I'm very glad she's mine.



Ali 
xx

29/03/2017

Social media and why can't people just be themselves!

I recently watched an episode of the show Black Mirror on Netflix for the second time. It's called Nosedive and it takes place in the future, where people can vote each other's popularity out of 5 stars.  The higher people's ranking, the more things they have available to them even including friends or acquaintances.  It's actually a really sad episode and it made me think lots about how there's so much emphasis on social media these days being like an online popularity contest and how many likes people can get for stuff.  I find it really quite sad and it actually makes me worry about my daughter's future.

I grew up with a phone that was connected by a wire to the wall and a TV that you had to walk over to when you wanted to change channels! Social media wasn't a thing back then (I'm not that ancient either!) and I really worry about (young) people today when I see what sort of stuff they post and also how on so many pictures you see, people aren't smiling.  They are more often than no doing the (duck!) pout and the peace sign thing or sticking their tongues out. I mean why can't people just smile and look natural? It seems to have become the norm to do it; but why? That's without all the filters available at the push of a button which make people almost unrecognisable.  What happened to natural beauty and when did these ridiculous poses become the in thing?  I much prefer seeing photos of people smiling, fresh faced and not in the slightest bit staged. I prefer those sort of pictures of myself too but I seem to find it hard to do a natural smile and always seem to do a really fake one if someone shoves a camera in my face, but at least I've tried!

I see so many pictures of (often young) people looking quite frankly ridiculous if you think about it. Girls seem to be a lot worse too.  If I want to take a photo of my daughter and she does a silly pose, I cringe.  I am not sure she understands why I ask her not to do it but I really don't like it.  She knows I hate it and sometimes will do it to wind me up and will laugh at my reaction before smiling! She's not even 8 yet and I want her to look like a little girl.  I'm not saying children don't look like children on such photos but I think it does spoil it a bit when they automatically do it.  Surely if someone points a camera at you, you should smile? I love looking back at photos from over the years and I wouldn't want them all to be like that. They obviously can't be smiling on every photo and I love nothing more than taking one when she doesn't know I have done, but I just find it so frustrating that every time I put the internet on, it's full of people looking the same! This is just my opinion though and I know not everyone will agree!!

Social media is such a funny one.  You can paint a picture of the perfect life when the reality is often nothing like that.  Think of someone you know and the life they portray themselves as having compared to the life you know they actually have.  An illusion of perfection is often far from the reality,  yet people can't help it.  Some people also seem to thrive on comments from others telling them they look amazing or they are "goals" which I absolutely hate!!  Goals is one of those cringeworthy things like when people say "bae". Judder!

The photos I share on Instagram are like an online album of memories for me and I love looking back at them. I like to take a nice photo and will try to make sure I have nothing in the background that I would prefer not to be seen (I mean no-one wants to see a random bra or a dirty plate lurking!) but I never post stuff that isn't real and if I've not been well enough to do something, I won't pretend I have.  I know some people feel they have to post amazing photos all the time which must have taken ages setting up to look just right, when actually behind the scenes it's nothing like the caption may suggest. I don't understand why someone would go to the effort of doing it.  If I don't have anything to post, I don't put pressure on myself to post.  I certainly don't waste energy I don't have setting up a photo for the sake of social media. It really shouldn't matter what people think but it does matter to so many.  Some people feel they have to post stuff to look good, to get a certain number of likes.  Who actually cares though? I also know of young people who feel they have to fit in with what their friends or peers are doing despite not actually wanting to and if they don't do it they will be alienated. It really makes me sad.  Does it really matter? It 100% shouldn't but today's society is a scary place to be growing up in.

I guess what I'm trying to say is I just wish people would be themselves and not feel they have to comply with what they think is expected of them or to please other people.  The episode of Black Mirror I mentioned is very thought provoking. In fact, the majority of episodes are and I definitely recommend watching if you can.

Would love to hear what other people think about this!





Ali
xx

11/03/2017

M.E anniversary

Recently I've been feeling a little bit sad; which happens sometimes given all that life throws at me! However I've noticed I just haven't been feeling right and couldn't put my finger on it... until it dawned on me that it was March back in 2003 when I was diagnosed with M.E and I always seem to get sad each year at this time. 2003 is a long time ago and you would think I'd be used to it after so long but it appears not! 14 years is a long time to have been poorly. To have had "normal" life taken away from you.  To suffer each time you do anything remotely normal and to not remember how it feels to feel well. To not remember what it's like to wake up and feel refreshed.. oh that would be amazing! To actually be able to fall asleep in the first place (oh insomnia you are evil).  To feel trapped. To want to scream so loud (but not having the energy. Oh the irony!). The list goes on...

Today was a rough one.  After a rubbish night's sleep yet again, I woke up in a horrible mood and just felt really sad.  M.E is bad enough even without throwing insomnia into the mix and I never had problems sleeping until I became ill.  I was angry at my illness, frustrated at knowing it was another bad day before it had even begun (it's a bad one when I can tell before I've even got up!), upset at all the years I've been ill, wound up at everything all at once and the tears just flowed.

Sometimes it's good to have a cry no matter how draining it is.  I don't seem to cry too often these days which I'm surprised at really, but today I couldn't stop it.  My little girl then suddenly appeared and I tried to hide it but she knew.  She climbed up on to the bed and cuddled me.  Of course that just made me cry even more!  She asked why I was crying and I said I wasn't feeling too good and that it makes me sad sometimes. She gave me a pep talk!  She told me that I'm poorly and that it's ok and I needed to rest today. She said she's lucky I'm her mummy (more tears).  She wiped my tears and had me laughing within minutes. How crazy is that... that my almost 8 year old is often the one who changes my whole perspective on things. She really is amazing that girl.

The tears tricked me and had obviously decided they hadn't quite had enough and they came again later on. I luckily had the house to myself as I felt like I wanted to be on my own. Then my mum said she was on her way round and I realised how much I needed a mummy cuddle!  I burst into tears on her and she was just there when I needed her. We chatted and I felt so much better for talking to her. Plus she bought me daffodils and a This Works deep sleep stress less rollerball thing. It's not just my little girl who thinks she's lucky with her mummy :-)

I think I definitely needed to get it all out of my system.  I felt much better for it and spent the rest of the day chilling out. Listening to relaxation stuff, watching back to back episodes of the show I'm currently obsessed with and just feeling nice and calm.  As you know if you know me, I try to be positive a lot and I'll carry on being but it's ok to be sad. It's cathartic to cry.  A friend of mine said to me today "You spend so much time caring for and kindness for others despite being ill, I know you often forget you".  It made me stop and think and perhaps I don't spend enough time on looking after me.  Self care is important and I'm going to make sure I do it more.

I won't focus on the negative anymore as I feel I've dealt with it now.  I will be back to focusing on the happy stuff and the things I have to look forward to this year (did I mention I'm going to Disneyland Paris?!!!!!). Little Miss is 8 in a few weeks so I'll be spending some time thinking about how lucky I am to have her.  Because I really really am.




Ali xx

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