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


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 


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


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



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


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


A few of my favourite things

This week hasn't been the best for a few reasons but I am trying to focus on positive stuff.  I also think that when you're living with chronic illness it is really important to have happy things to keep you going.  So, I thought I would share a few of my favourite things.. things that make me smile. Other than my daughter as that's a given!

Top of the list I think has to be sparkle! Everyone who knows me knows how much of a magpie I am.. I am just drawn to glitter & anything sparkly. If I could I would live in a glittery wonderland where everything just sparkled & I would be permanently smiling! However as that is only ever likely to happen in a fairytale, the best I can do is adorn my hair, body & anything else I own with as much of it as possible. It appears I have passed my love for sparkle on to my daughter too. Hurrah!

Another favourite thing of mine is nail polish.  I have loads of it & a special storage unit for it all! Well, the stuff I can fit in it anyhow. I used to bite my nails when I was younger so seem to have gone OTT with it now I have decent nails. Obviously my favourite kind of polish is glittery!!

I also love bows. Anything & everything bow shaped I just have a thing for. So imagine my joy when I discovered Crown & Glory, who make the most amazing glittery hair bows. I have rather an impressive collection going on now despite only finding out about them a few months ago!!

Vintage stuff makes me smile. I love things like china teacups.. they are just so pretty. My mum-in-law got me one last Christmas & I adore it.  It would be amazing to have a separate room to turn into a den full of vintage loveliness! I love looking at all the different stuff on Instagram.

As well as vintage I also love kitsch stuff. I've always liked things that are rather quirky. There is some amazing jewellery out there & I love anything that's a bit different. I probably spend far too long sometimes looking through pages of it on Instagram. Can you see a pattern forming?!!

I can't do a post about some of my favourite things & not mention the one & only Keith Lemon! He cracks me up & just in case anyone missed it here is a picture of me when I met him the other week!!! Blog post about it here :-)

Make up, bags & shoes are an obvious thing to like but it's true that a lady can never have enough of any of it!! Yes we really do need that shiny new lipstick even though we have hundreds already... and those shoes. No of course they don't look anything like that other pair I have but hardly ever wear ;-)

I can't finish this post without mentioning my friends. They are just awesome & I am so grateful for them. Any of you who don't know how much I value your friendship then I am telling you now. ☆♡☆♡☆
Laughter, craziness, tears.. whatever it is, they are there & we get each other through. I think having good friends is even more important than having lots of shoes ;-)

What are your favourite things? If you say glitter then have a big high five from me!

ME Mummy A


Looks can be deceiving!

This is a very quick post as I am really struggling as a result of doing too much the last few days (by my standards anyway).

I am lying in bed thinking how people wouldn't believe I was the same person they saw earlier today.  They'd have thought that despite me being in the wheelchair, that I was well. To look at I probably looked fine. It's amazing what a bit of make up & a some sparkle in your hair can do to cover up a load of poorlines!
With M.E, as I've talked about before, it's an invisible illness so it isn't always obvious the sufferer is suffering!

This afternoon it was my daughter's dance show at the Northern Ballet theatre which has made me a very proud mummy (& auntie as my niece was in it too). It was brilliant & I'm so glad I went. I didn't think I would be able to last night as felt so bad.  I think I forced myself to go really as I had a bit of a wobble last night & got really upset about missing out on lots of other stuff.

The way I feel now after almost 4 hours of being home, I am thinking about how wiped out I (we) get from doing something that most people would see as normal.  I have had ringing in my ears for hours, I feel so poorly I can barely move. I have had to just lay really still. Everywhere hurts. And the next few days will likely be even worse.

I have done a before & after picture. My face now is grey, I have dark bags under my eyes & if a picture could talk it would be saying Bleugh!  Looks really can be deceiving...


The Autumn Tag

When my beautiful friend Meg at Meg Says tagged me in her Autumn Tag post I thought "Oooh I like the sound of this" so here I am.

I have to say I love Summer. It makes me feel so much better when I see the sun shining & I love being able to chill with it on my face so I usually dread the change of seasons.  However I do rather like Autumn & so here are the questions with my answers :-)

1. Favourite Starbucks drink

Shoot me down if you wish (!) but I am not a regular visitor to Starbucks! I can't drink coffee unless it's decaffeinated due to tummy problems & IBS, but on the odd occasion I do go in a Starbucks I tend to have a.. shock horror.. herbal tea!! I am seeing lots of pictures online at the moment though of people's festive Starbucks cups so may have to go in just to get one!

2. Favourite music to listen to

I love music & I like a huge mix. I don't have a particular favourite style, it all depends what mood I am in as to what I listen to.  I have just been listening (& singing along) to Bruno Mars. But also on my playlist at the moment is Calvin Harris, Michael Buble, Christina Aguilera, John Legend, Alicia Keyes, Coldplay, Ed Sheeran & Kings of Leon to name a few. A proper mixed bag!

3. Autumn scent

I have just noticed while writing this that I am running short on perfumes!  My all time favourite is Dolce Vita by Christian Dior which is quite a musky scent, but I haven't had any for ages. Hint hint ;-) I like quite sweet smelling ones & wear them all year round despite them probably being more suited to Summer. I love Vera Wang Princess which I ration use of as I don't want it to run out! Next do some nice everyday perfumes & I have a few at the moment.  I don't have a particular scent for different seasons, as long as I like it I wear it.

4. Favourite Autumn lip product

I never used to wear lipstick as I didn't think it suited me & I used to stick to gloss. But a few years back I turned into a lippy lover! I have loads & in Autumn I like wearing red or plum shades.  I recently won a Twitter competition with Bourjois & one of the prizes was a lipstick which has become my new favorite.  It is from the Rouge Edition range & the shade is number 18 Violine Strass.

5. What do you love most about Autumn?

I really like wearing chunky jumpers & cosy onesies! I also love seeing all the different coloured leaves, they are so pretty & watching my daughter jump in them when they are on the ground is lovely.

6. Go to Autumn accessories

I have a bit of a thing for scarves. I have a special hanger in my wardrobe just for them as I have so many! Plus all the ones that aren't in my wardobe.. I think they are so versatile & not only good for keeping warm but they dress up outfits so easily. This is a just a selection of some of mine..

I think Autumn also screams ankle boots, funky tights, earmuffs & long coats. I have a new one which I haven't worn yet in blue check & it is very Autumnal.  I also have a new found love for hair accessories. Crown & Glory is amazing & make the most beautiful stuff. This flower crown epitomises Autumn for me. It is called the Whole Lotta Rosie & I teamed it with my new lipstick as mentioned above.

7. Favourite Halloween movie

Not seen it for a long time but has to be The Rocky Horror Show!

8. Favourite Autumn nail polish

I also have a bit of a thing for nail polish. I have a whole storage unit dedicated just to them! Summer is all about the brights & Autumn is for the darks. I love a classic red mani but I have a favourite at the moment which is another Bourjois product. It is black & has loads of glitter in it. I also have a (big) thing for glitter!  It is so sparkly & it stays on really well. Usually by day 2 I am messing with my nails & have to start again but this one has proven me wrong. It is called 1 Seconde Gel Silicone Texture & is in shade 31 Dangerous Wish.

9. What are you most looking forward to this Autumn?

Having chronic illness makes it difficult to go out & do all the things I wish I could do, like walks in the park kicking crunchy leaves. Going over them in a wheelchair doesn't quite have the same effect! But I am looking forward to snuggling under my amazing heated throw, drinking hot chocolate with marshmallows & doing Autumn crafty things with my little girl. I love burning scented candles when it's dark out, there's something really cosy about having a candle burning. And more than likely I will be eating nice chocolates that are meant for Christmas but that I couldn't resist buying!

Thank you for reading, hope you've enjoyed it. I am tagging my lovely friends Aly at Perfect is a Myth, Hayley at Life, Love And M.E & Emma at Emma's Looking Glass but feel free to write about your favourite Autumn things in the comments & let me know, I'd love to hear :-)

ME Mummy A


When unexpected things happen!

This week has been a week I shall most definitely never forget!  It all started off as a usual one plagued by rubbish symptoms. At the start of the week a new account started floating about on Twitter called The Two Fairies. I had seen a few things about it but didn't really know what it was. But then suddenly, very randomly, when someone asked how I was I mentioned I had a cold & the fairies appeared asking if they could send me something! Lo & behold the following day I received a £50 spa voucher. How totally unexpected & lovely was that?!

As the week went on more & more people got wind of these fairies & they spent every day doing lovely things for people. Everyone who knows me knows how much I love random acts of kindness (RAOK's!) & the fairies were doing just that.  I had my suspicions about who was behind it & it was confirmed a few days ago when the fairies' identity was revealed.  They are called Magic & Sparkle & belong to M&S & their Chrismtas ad campaign! I love the advert, it is quite magical & they are as I write this still granting wishes & sending people gifts.

Anyway so that happened on Monday. Wednesday was bonfire night & I managed to make it out to take my daughter to watch fireworks at her school. Nearly didn't as had a wheelchair disaster which I won't talk about but all was ok in the end!

Thursday was a really really bad day with the M.E & I am ashamed to say my positivity (as per my previous post!) faltered a bit. I was waiting for bedtime so I could write it off & start again but things changed when I got a text from a friend.....

Now some people may laugh but I am a massive Keith Lemon fan. Not in a weird way but in a 'he cracks me up' kind of way! I was watching Celebrity Juice that very evening & laughing my head off as he always guarantees laughter.  My friends know how much I like him & I have been sent various Keith related items including cards, calendars & the best one was a lifesize cardboard cutout of him!!!!

So I had a text saying he was going to be in Leeds doing a book signing the following day. With how poorly I was feeling I thought that as much as I wanted to go I wouldn't be able to, as it said on the website queues were likely to be for upto 90 minutes. There was no way I could attempt that without it really affecting my health.

Then I had a moment of madness & wondered if I sent Leigh Francis who plays Keith a direct message on Twitter whether he would read it. You can only send messages on there if people follow you so I decided to be brave! He has tweeted me before but he replies to his fans all the time & has millions of followers so I am just one of many. I said in the message that I would like to try & go but wouldn't be up to queuing for long with my condition & asked him if there would be anything they could maybe do.  I didn't think he would read it. I was wrong, he did! And he replied saying if I spoke to WHSmith who were doing the signing then they should allow me to go to the front of the queue.

The fact he had replied was amazing in itself but I decided to be bold & ring WHSmith. The manager called me back & I explained my situation.  I told him I shouldn't even be contemplating going due to my health. Which I shouldn't have but when else would an opportunity like it occur!! He said although the access to the unit where the signing was would be fine he didn't like the idea of me having to battle through the crowds in the wheelchair. Then he said (& I am so so grateful) that if I went early he would take me to the Management Suite to meet Keith before he went to do the signing. Erm whaaaaat!?!? I started crying at this point & freaking out a bit.  A lot. A very lot.

Fast forward several hours of palpitations & adrenalin that got me through!  I was so nervous but it was brilliant. Keith was lovely, he knew who I was from my message! He took time to chat & have photos done. I asked if I could put my arm round him for some pictures (don't ask don't get)! He complimented me on my jacket which had full on sparkly sleeves & then got his phone to show me a similar jacket his stylist had sent him a picture of that day!  I clearly have good taste ;-)  I asked if I could take a selfie of us. I do love a selfie! He was just really nice & as funny as he is on TV. He wrote me a message in my book - he has a book out called Little Keith Lemon which is the story of his life so far. I was totally starstruck!

My daughter was a little bit shy, she didn't actually realise Keith Lemon was real bless her! She only knows of him from my cardboard cutout (which I hate to say is in the loft now)!!! But she had her photo taken with him & he signed his kids' book for her. It's called The Beaver & the Elephant & is very funny.  We read it tonight at bedtime & when I said goodnight to her she said Oooosh. You have to laugh! She is very chuffed she has a signed book with a message just for her. Especially now she knows he is real.

I am suffering very badly with my symptoms now but I expected it & I don't care as it was one of the best experiences ever & something I will never forget.  It will make me smile on my dark days & I would love for him to know how happy it made me. Chronic illness stops us from doing so much but I had a 'sod it' attitude & knew that despite the after effects it would be so worth it.  I read a newspaper article which he had done after we met him about being back in his hometown & he said that he had just met a lovely family. I wonder if he meant us, I shall just assume it was to make me happy!!

I never in a million years would have expected this to happen. I never imagined I would get the chance to see him in person never mind sit chatting with him like we were mates. I am still a bit in shock really but it just shows that you never know when fairies may be watching over you & they may totally unexpectedly grant your wishes one day :-)

☆ ☆ ☆ I believe ☆ ☆ ☆

ME Mummy A



I am just sat (well lying down if I'm being literal) thinking about how easy it is to let your illness consume you & how difficult it is to see the positive in things when you feel so poorly so much of the time. But, I have noticed that I am being a lot more glass half full rather than glass half empty recently. I think it's because I know such good people who make me laugh or make me see things differently when I have started to let it get to me.  I know some really positive people too & looking at their stuff online, whether it is reading their blogs or looking at pictures, also seems to help.  I have got really into the wonder that is Instagram (where people just post pictures... I never knew how addictive it would be!) All I need to do is have a look at some of my favorite pages on there & I soon fall under the spell of loveliness!

When I used to go to the M.E Clinic they covered positive thinking as one of the coping mechanisms of living with M.E. They used to advise us to challenge any negative thoughts or replace them with positive ones. So for example if you find yourself thinking something like "I will never be able to go out as I feel so poorly all the time" try to replace it with something like "I don't feel well enough to go out at the moment but I will hopefully improve a bit soon & maybe be able to get out for a bit".

Being positive is very very difficult sometimes but as I've mentioned before there is a lot of support online via social media & it definitely helps to take your mind off how rubbish you feel.  Of course it doesn't take it away but it can help you forget about it for a while. My friends help me get through each day.  Whether it is just general chat or silly, totally random conversations, it seems to keep me sane! Whatsapp is a godsend too & I hardly ever send 'normal' text messages anymore.  I know I can pick up my phone & there will be someone there.

I have done a lot the last few days as a lovely friend of mine (who also has M.E) came up to see us & I am feeling really awful but it was worth it. Another nice memory for the memory box I made with my daughter at the start of the year! And surprisingly, despite feeling bleugh, I still feel quite cheerful.

PMA stands for Positive Mental Attitude.
The amount of times me & my friends have typed those 3 letters over the years makes me giggle. We sometimes say it in jest when things are so bad that it is virtually impossible to be positive! But I really do try. I think I try to cover up how I really feel a lot but what is it they (whoever they is) say..

"Everyone wants happiness, nobody wants pain.  But there can't be a rainbow without a little rain"

I'm going to leave you with some nice quotes as who doesn't love a good quote :-)

ME Mummy A


Question & Answer post

I recently asked on social media if anyone wanted to ask me anything relating to my illness.  Thank you to those of you who asked questions & thank you also to everyone reading this. Here goes.....

What is M.E?

M.E is a very debilitating physical condition that causes various symptoms including severe fatigue, muscle pain & weakness, heightened sensitivity to senses (mine is smell!), problems with memory & concentration & sleep problems. They are just a few of a long list of symptoms & not all sufferers experience the same ones. There is a large scale of severity with M.E. Some people are mildy affected & can still function normally to some extent whereas others are very severely affected & completely bedbound requiring help with everything. I am fairly severely affected, which people who don't know me may be surprised at as I appear to look ok. That is the problem with invisible illness, sufferers often don't look unwell.

There are a lot of misconceptions towards what M.E is due to the lack of understanding towards it I think.  It used to be known as Yuppie Flu & people often think it's "that thing where you're tired all the time".  It is so much more than just being tired. I did a post previously about what M.E is which explains in more detail - link here

What's going on in your body to cause the symptoms?

I am not really sure what's going on in my body anymore!! What I do know is that I constantly feel rubbish. An easy way to describe how I am is to compare my body to an almost empty battery.  I am constantly running on very low energy & if I don't try to recharge a tiny bit by having short rests I burn out.  The exhaustion I experience is totally out of proportion to whatever activity is undertaken.

When you have M.E your body doesn't play ball & I feel like mine has totally let me down.  If I try to walk more than I am able for example, I end up with severe pain & fatigue which comes on very quickly. It's like my body is saying OI STOP!

Our immune systems don't work very well either so we are prone to picking bugs & things up more easily which then take longer to go away & totally wipe us out.

Had I heard of the illness before I was diagnosed & what was my perception of it?

No, the first time I heard of it was when my GP said he thought that's what it was.  He didn't explain it, he may have given me a leaflet but it is pretty much a blur.  I had been forwards & backwards to the doctors over several months so I was finally given a reason for feeling so poorly but I didn't understand it at all.

My mum printed some stuff off the internet for me & I was basically left to find out what it was for myself.  I discovered by the stuff online that there was an M.E clinic local to me so I asked for a referral! And it was there I received formal diagnosis in March 2003.

How has having the illness changed me other than symptoms (i.e am I more patient now, do I appreciate small things more)?

Its has changed me in lots of ways I think. At first I used to get very angry at stuff & it took me a long long time to accept that this was me now.  Over time I have learnt to adjust & although there isn't a lot of positive stuff that comes with chronic illness, it makes you look at things differently.  You definitely appreciate the small things more & I don't take stuff for granted now like I used to. When all the every day things you did without thinking about before get taken away from you, it changes your whole outlook.  Who would ever think that walking down their street would be something they couldn't do? Certainly not me.

When you become ill your world becomes a lot smaller so the little things that other people probably don't find important become really major to us.  I really appreciate people & the ones who take time to think of me. Small gestures mean so much. Knowing people care means the world. I have also met some amazing people through being poorly who I class as some of my closest friends.. other sufferers understand how it is & despite being poorly they are some of the kindest, most generous people I have known.

What's the best piece of advice for someone newly diagnosed? 

Listen to your body.  I didn't & I very stupidly pushed myself to keep going.  I was a 20-something "normal" girl with a good job & a good social life.  I didn't want it to affect my job or it stop me from doing the things I enjoyed. I used to come in from work as a lawyer, sleep a few hours then make myself go to the gym. I remember how I used to tell myself to stop being so pathetic & wonder why I was yawning so much on the cross trainer! I learnt the hard way though & after not even a year I ended up pretty much collapsing & my body totally crashed. It had given up & I regret pushing myself so much now.

What can friends & family do? What should they not do?

It is very difficult for people close to you as they see the person they care about suffering & can't do anything to take it away.  The most important thing to do is just be there whenever needed.  Whether it is to be a shoulder to cry on (as there is a lot of crying!), whether it is to just listen when we need to get stuff off our chests (there is sometimes a lot of shouting!), whether it is to try to make us see things in a different way as our thoughts can spiral rapidly when we are in a crash..we sometimes need someone to be our sensible head.  Helping to get food or drink if we are unable to & other little things to save our energy. Sometimes just a hug will do when you don't know what to say.

When someone is having a particularly bad time, things like a card to let them know you are thinking of them is lovely. Or chocolate always goes down well!  We really don't enjoy feeling so poorly so even getting a nice text message can make all the difference.

Things not to do is say stuff like "snap out of it" or "just stop being so lazy" or "I'm sick of hearing about you feeling poorly" or "I'm sick of you being poorly"!! Having your illness thrown at you isn't nice.

Another thing we (I) don't like but people always think they are helping is to say that their neighbour's auntie's friend's sister had M.E & is now better (as a result of some so called miracle cure)! There are no proven medical cures so as nice as it is we unfortunately have heard it all before & if we don't say much in response then that's why!

What do you do to prevent other illnesses from affecting you because of M.E, such as depression?

I think it is very difficult to become (chronically) physically ill & it not affect you mentally.  When I first got diagnosed & kept pushing myself I was in denial I think. When I eventually crashed I became housebound (& pretty much bedbound) for a year.  My doctor had been telling me for a while that I was showing signs of depression but the whole stigma attached to mental illness & anti-depressants made me fight against it & I was adamant I was fine. I wasn't fine though & eventually broke down in front of my GP.  I started on tablets despite my worry about them but I soon felt like me again & wondered why I had been so against it.  I came off them after a year or so when I started getting my head around being poorly & having to change the way I lived.

However once my daughter was born & my condition took a turn for the worse I didn't realise I was suffering again. I was diagnosed with post natal depression & started back on tablets but I think it is virtually impossible to avoid it when your life is so severely affected by illness. Depression isn't just feeling "depressed" & it may not even make you feel like that. It can affect you in so many ways for example making you really short tempered, disturbing your sleep so you wake up in the middle of the night but can't get back to sleep, giving you major loss of appetite.  All the symptoms were there but I didn't realise until months later when I spoke to my doctor about something else & happened to mention it.

People tell me now I am always happy & radiate positive energy.. not sure I agree & they don't see me miserable & moaning ;-) But I do try to stay positive & I think I use humour a lot to cover up the crap.  I find I laugh a lot now, it helps having equally crazy friends!! There's nothing much else that makes you feel the way proper belly laughing does!

What medications do you take for pain & sleep?

There are various meds we can take to try to help alleviate pain but there is nothing we can take to cure M.E unfortunately.  My pain has been a lot worse over the last few years & I may also have another condition called fibromyalgia which a lot people with M.E seem to get too. Something I use a lot is an electric heat pad. It is really good for aches & I have it on a lot!  I have regular osteopathy sessions too which helps with alleviating the pain for a while.

I take muscle relaxants at night as & when I need them, usually when I am feeling particularly achey as they help with the pain the next day.  I have a few different painkillers for when my pain is bad. I am prescribed a high strength of co-codamol which used to make me feel woozy but I am too used to it now so it doesn't affect me much!  I also have sleeping pills as my sleep is so bad.  I never had sleep problems until I started with M.E.  Insomnia is evil!

How do you explain M.E in a child friendly way?

For my daughter me being poorly is all she's ever known.  She is 5 & a half now & understands that "mummy has M.E & doesn't have much energy".  She knows I get really tired & my legs hurt so I need to use a wheelchair.  It's how things are for us & she just gets it.

Some people with children try to hide their condition from them, or the severity of it, but for me that was never an option.  I think if you explain when they are old enough to understand, even in basic terms, that you are poorly & can't do X Y or Z it gives them a better understanding of why you might not be able to do the same sort of things they see other mummys or daddys do.  I don't think complicated explanations are needed but if they grasp some sort of understanding then it is a good thing.

How was it when your daughter was a baby? How did you cope then?

It was very tough. I didn't expect to become so much more poorly so quickly as I had been at the same sort of manageable level for a while. I relapsed very quickly after having her & was unable to get through a day without having to ring my husband to come home from work early, which wasn't exactly ideal. I used to try to manage but by about 4pm the fatigue was too much to cope with & I would feel like I was going to collapse. It wasn't just the usual tiredness everyone with a baby gets. It is so difficult to explain but I needed my baby to be safe & I didn't feel with the way I was that she would be.

After a while my husband had to get signed off work to help look after us both & we then got support from the doctors in getting care put in place to support me.  Carers started when my daughter was 6 months old & having someone there to help with stuff I didn't have the energy for made all the difference. Knowing I could go & lie down to recharge a bit while my baby was safe helped loads.  Family helped whenever possible too.  I felt useless but soon came to realise that I was just doing the best I could as a mummy with M.E.

How do I manage mummying & being ill?

It is a lot easier now in respect of her being old enough to play without having to constantly be with her.  She has always been very independent since being tiny anyway! We have to do things differently to other mums & as I have mentioned recently in another post we do a lot of craft stuff or play games at home as I am not upto going out lots.  She knows I have to rest a fair bit & will happily chill out with me & watch something on tv while I shut my eyes.

On weekends if we don't have anything planned (or if she doesn't have a play date or a party!) her dad will take her out so she can burn off some energy which she has loads of! Or family if they are around when he is working.  She is quite happy being in the house but I don't like her to be stuck in because of me so if someone can take her out even if just for a bit then it helps. The rest of the time she is happy playing with toys or sitting drawing or colouring in & I'm sure my non existent artistic skills have improved loads as a result!!  I experience a fair bit of mummy guilt about not being able to do certain stuff but try not to beat myself up about it too much.

What does my future hold in terms of ever feeling better?

Honestly I don't know. Chances are because I've had it so long even if I was to improve it will always be there.  It is difficult thinking about the future when trying to manage the here & now. Some days just the thought of getting through the day when plagued by horrible symptoms is daunting enough.

I would love to say one day I will be free from this horrible illness & able to work, or live what I perceive as a normal life, but I just dont know.


Thank you so much for reading & if anyone has any other questions feel free to ask.

ME Mummy A xx


Having a break from the norm

I am not upto writing too much today as we have been away for a few days & I am suffering big time! The joys of payback...

We went the seaside overnight to a place called St Annes which is next to Blackpool. It was nice having a change of scenery & a bit of fun.  I knew I would feel rubbish as a result but (& I have been speaking to a few friends who also have M.E & we all agree) it is worth feeling rubbish when you've actually done something rather than feeling rubbish for no particular reason.  You expect payback & you know it will wipe you out but as I've said before if we don't ever do anything then it makes an already crap existence even more crap!

The journey wasn't too bad despite taking about an hour & 40 minutes.  My back hurts when sitting for not very long & I get really uncomfortable.  But I managed to shut my eyes as my daughter was happy with her electronic books & games on the tablet (obviously I wasn't driving!!) & I was almost nodding off.

We went down to the Pier when we got there & went in the arcades.  You can't go to the seaside & not go to the amusements! Dread to think how much money we wasted!!

We had good old fish & chips too which again is a must at the seaside!

We went back to the hotel & while I rested they went swimming.  We then chilled for a bit before going to do some children's activities.   My daughter now has an arm full of Halloween tattoos!

We had dinner in the hotel & made the most of the buffet! I don't really eat dessert at home but couldn't resist the huge chocolate cream eclair Mmmmm...such a piggy.

We went to Blackpool zoo the following day & really enjoyed it. I was complimented on my newly decorated wheelchair (blog post to follow!)  It was very wheelchair accessible & made it easy for me to get around.

The first animals we saw were a pair of giant tortoises who happened to be mating. My daughter thought it was cute that the mummy was giving the baby a cuddle!!!

They have loads of wild animals there from tigers to elephants to giraffes & it was really nice being able to get so close to them.

My favourites were the penguins but their feeding time was rudely interrupted when a seagull went to the toilet on my daughter's head & we had to go & wash it out!!

We watched a creepy crawly talk & those who know me will be shocked to find out I held both a giant snail & a giant cockroach. I bottled the cockroach at first then decided to give it a go.  I can't say I enjoyed it!  My daughter wasn't phased at all...

We stopped to see an old friend briefly on the way back who I worked with many moons ago & haven't seen for a long time so that was lovely.

Journey home was a nightmare & there must have been an accident or something as we hardly moved for ages so ended up diverting to my uncle's house in Manchester & stayed there for the evening!

I am having a couple of total rest days now so will hopefully pick up soon. After over 11 years of experiencing payback you would think it would get easier but it doesn't.

However when I think back to the "cuddling" tortoises it makes me giggle & seeing my daughter have fun makes it all worth it :-)


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