Goodbye 2014

This last year has been very mixed as usual. I have been poorly for so long (coming up to 12 years) that it's difficult not to dwell on the fact that it's another year gone & you're no better bla bla bla. This year I feel like 2015 is just a bunch of numbers & I am not going to start going on about what I expect or hope from it as it never seems to happen!

So many people I know have had such a lot of awful stuff happen this year & it hurts that I can't do anything about it. Suffering with bad health is another thing that you can't do anything about for anyone but given half a chance you would make it go away. However, despite that, there has been positive stuff happen too. Friends old & new have helped make it better with lots of laughter & support.

Something nice that I started on 1st January 2014 was a Memory Jar.  My daughter decorated it & the intention was to write down things that made me smile & fold them up, put them in the jar & not read them until New Year's Eve.

So here we are on 31st December 2014 & I did indeed keep up with the jar! I didn't always remember to write stuff down but it's a good job I didn't as it was full! I sat with my daughter today & she opened them & passed them to me to read. So many lovely memories & things I had forgotten all about. Small things that made me smile. Things my daughter said that made me laugh. Achievements, no matter how small, went in the jar. Places we went. Meeting new friends. Of course meeting Keith Lemon was up there with the highlights!

I am going to be doing a new jar for 2015. When you look back over the year & all you can remember is being poorly or having bad stuff happen, then it's lovely thinking of all the things that made you smile.

Happy new year!

ME Mummy A
xx

Illness on top of chronic illness

As if it isn't bad enough having M.E & never feeling well anyway, when I am unlucky enough to catch some sort of virus or bug or lurgy (!) it makes everything a million times (or so it seems) worse.

I started feeling like I was coming down with a cold a few weeks ago but it just kept lingering & didn't really get any worse so I (stupidly) thought I had got away with it. Wrong! For about the last 4 days I have had a cold. For healthy people a cold is just that. It doesn't affect them too much & they can carry on doing stuff. However add chronic illness into the mix & it becomes so much worse.  I am quite prone to sinus infections after a cold so I am having to try things to stop it happening like doing sinus rinses & using steroid spray which I have in just in case. If I catch an infection it makes me mega poorly so I really can't afford to.

Whenever I get ill it affects me so much worse than it would if I didn't have M.E. Even something as simple as a cold makes you feel like you have full blown flu even though you haven't.  I have the flu jab now & have avoided getting it the last 3 years since having the jab.  I used to catch it every year without fail & couldn't risk it anymore as flu & M.E is pretty much the worst combination ever!!

It is the school holidays at the moment & because I've felt so rough I've not been able to do stuff out of the house with my daughter, which I am finding quite upsetting today. As you will know if you read my blog I already find it hard not being able to do a lot of stuff but when you're ill on top of ill it really does get to you.

She knew I was upset earlier & before going to the cinema with her dad she brought me this note she had written me. She really is the best. My little sunshine ♡

ME Mummy A 

xx

Festive season & missing out

I am writing this because I am feeling pissed off & need to get it off my chest! My family have gone to a local coffee shop & the kids are meeting Santa. I am however too poorly to go out & yet again M.E has ruined something for me.

I have been doing well being positive lately but it's times like this when it hits you & you just feel so sad at having to miss out. Again. I have had a few very stressful things happen this week & it has all caught up with me now. If I had ignored my body & pushed myself to get ready to go out, I would likely have collapsed before even getting in the car. There have been too many times where I have made myself do stuff knowing full well I wasn't upto it & the impact is has on me is just not worth it.

The festive season is difficult for anyone suffering from (chronic) illness for various reasons. We have to try to rest as much as possible to enable us to get through & cannot join in the festivities like everyone else around us. We feel hungover when not so much as a drop of alcohol has passed our lips & the chance of a mad night out is a fine thing!

Having children at this time of year is extremely difficult as (for me anyway) you want to be doing fun stuff with them & have visions of going to Winter wonderland type places & doing things like ice skating & eating hot sugar doughnuts. The reality, if even well enough to get up out of bed in between resting, is being snuggled under a blanket whilst watching Christmas films & drinking hot chocolate. Which isn't all bad I suppose! But the way it makes you (me) feel when all you want is to be doing "normal" things is quite soul destroying.

My daughter asked if I was going with today & having to say no breaks my heart. Every time I miss out it breaks me a little bit more. Who wants to miss out on precious times where memories are made? This life is no fun.

Sorry for the slightly negative post, I just had to write while I am feeling like this. I don't want pity but this is the reality of chronic illness.  Us poorly people are some of the strongest & I wish I could give us all good health for the new year.

Never take for granted what you have & appreciate everything.

Lots of love & sparkle
ME Mummy A
xx

Happy things & importance of having things to look forward to

Life with chronic illness is very difficult. Day in day out plagued by symptoms is really no fun. It is very easy to fall into a dark hole & struggle to get out of it so if you find something that makes you feel happy then you need to grab onto it! So bearing that in mind I wanted to mention a couple of things which have been making me smile recently. I don't often buy things for me so I have been treating myself for a change!

If you have read my recent posts you will know how much I like Crown and Glory hair accessories. They have a monthly subscription called The Glitterati run by the super sparkly Sophie King who owns Crown & Glory. I joined a few months ago & for £20 per month you get a box full of goodies worth at least £50. Bargain!

Now it's always nice getting happy post but knowing at the start of each month a box of amazingness will be arriving is rather exciting!  Not only that but there is a secret Facebook group for members where we chat, share pictures & can also swap any unwanted items. Everyone is so so lovely too so it's been really nice meeting new people. It is quite amusing when we know the postie should be bringing the sparkly box.. we (well I definitely do!) seem to turn into a crazy window-watching-postman-stalkers!!

I wasn't exaggerating that the box is sparkly...

Inside there is always a mix of different hair things, some totally exclusive to the Glitterati & not available online.  The last few months have been sponsored by other places too so we've had extra lovely things in them.

The latest box was a Christmas themed one & if you like pretty things & sparkle I think you will share my appreciation of it!

Of course my daughter also loves wearing the stuff & even though I am not well enough to go out very often, who says you can't adorn your head with beautiful creations even if you're in bed ;-)


☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆


Another monthly subscription I have been admiring (or rather drooling over) online for a while now, but only just signed up to, is Lucky Dip Club. I first found out about it on Instagram - link here - when I spotted it on someone's feed. I can spend ages looking at the pictures as it's all so lovely & quirky & fabulous! For £15 per month you get a box full of gorgeous kitsch goodies made by the very talented Leona. Each month has a different theme, there is always lots of positive quotes & a personalised item in each box. The presentation of everything in the funky packaging she uses is almost as exciting as what's inside!

They sell out really quickly when they become available each month & you can either buy a single monthly box for £18 or you can have a rolling subscription so you ensure you don't miss out on the next one.

The latest box was a "Kitschmas" one & to my excitement it had lots of glitter & bows in it! There were a couple of DIY garlands so I have done them with my daughter & it was lots of fun. I have just found out January's theme is unicorns, seriously excited about that one!

I know there are various beauty subscriptions that people are fans of & probably loads of other things too so if you want to share I'd be interested in knowing. Although I think two addictions is plenty enough already!!


ME Mummy A
xx

Charity!

With it being the time of year where our kids get loads of presents I started thinking about children who don't have anything & decided that it was time to have a toy clear out. Rather than take stuff to a charity shop I wanted to find somewhere direct who would benefit.

I found out about a local refuge & when I spoke to them they were extremely grateful that we were going to take some stuff there. It is the first time they will be doing Christmas for the children there & they said they would use the stuff we gave as presents for them.

When we took everything (we dealt with the ladies in the office) my daughter was so sweet & helped them put the toys into boxes. She said she wanted to work there! They said they couldn't even begin to tell us what a difference it would make. They had even written a lovely thank you letter for my little girl & it made me feel really emotional.

It really moved me & the thought of children with nothing made me feel really sad.  So I have been asking around friends to see if anyone has any stuff they no longer want so I can take it there again before Christmas (we are going in a few days but they don't know yet!)

As well as toys & clothes I am trying to get as many selection boxes as possible as they are doing a bit of a campaign for them to put in stockings for the children on Christmas day. They said they had some advent calendars donated a few weeks ago & seeing the children's reactions was amazing. One little boy was shaking with excitement as he'd never had one before. Just heartbreaking.  I contacted a few local supermarkets to see if they could help but they are already donating to other places.

If anyone local who knows me wants to donate anything let me know. Thank you x

Something else I heard about through a friend of mine was a campaign a Leeds fashion blogger called Gabby is doing. She is working alongside Leeds Children's Charity 'to give young people the gift of fashion this Christmas'! I donated a big bag of clothes & a few accessories & I can't wait to see what she does with the things I gave her to create new outfits. The link to her blog with the details is here.  Knowing people who wouldn't be able to afford new clothes will be having new outfits given makes me feel all warm & fuzzy.

I know it isn't much but knowing I have helped less fortunate people a little bit makes me feel happy. It doesn't take much & the difference it makes to these people is vast.  If everyone donated one thing imagine how much it would help?

Thanks for reading.
ME Mummy A
xx

Who says wheelchairs can't look good!

A while ago I mentioned that I had a new wheelchair which I was making some decorative adjustments to! That seems like ages ago now & I have been meaning to post some pictures of how it looks so here goes...

I decided not to go too over the top with colour, much to my own surprise... I actually love it & for the first time since having to use a wheelchair I don't feel embarrassed as I am no longer using a battered-rusty-falling apart-old thing!! So here is my lovely new companion, that is yet to have a name (!)

I used zebra print Duck Tape for the black & white.  Their UK website is here but you can buy on Ebay or Amazon & also Asda stock it.  I bought some silver crystals on Ebay which are described as for laptops but can be used to decorate anything.  They were really easy to use & can be cut to size then just stuck on.  I can't say it was a totally stress free job as I had to change my mind about the pattern I wanted originally on the sides as I couldn't get them to sit flush but I prefer it how it is now!

I have had lots of compliments from people when I've been out in it. I mean, who doesn't like a bit of bling!  When we went to Blackpool Zoo recently one of the people working there told me I had the perfect design for being there & I even had a sneaky picture taken with the zebras!!

My friend Hayley (who blogs here & since I starting writing this has been featured in 4 National newspapers raising awareness of M.E!!) did a visual campaign for M.E Awareness Week here & inspired me to have a few pictures done showing how you can still (yes, really!) look good in a wheelchair.  I am planning something else but for now here are a few snaps of me when I first decorated it.  I wish I could say I actually wear the heels however I don't!!! They live on a shelf in my bedroom for purely eye candy purposes. Crazy? Maybe. But I love them & had to have them, even if just for show!

Disability doesn't mean you should be invisible. And it certainly doesn't mean you can't look good.

Thanks for reading.

ME Mummy A
xx