Be Yourself!

Many years ago, while I was pretty young & before I decided to study law, I did some work experience with a barrister. I remember having a debate with a relative beforehand about what I should wear as I didn't want to wear the bog standard smart clothes. My argument was it shouldn't matter how you look but society is such that it does matter! We are made to feel like we have to conform with the norm. So I bought some new, very respectable outfits..

People are judged straight away on their appearance & anyone who dares to be different is often frowned upon. Which really irritates me. I have probably always been quite lacking in confidence. People may find that hard to believe as they always think I am really outgoing & don't believe me when I say I used to have terrible shyness. Shyness so bad that when I was very young it used to get me into trouble!  I still think I'm shy but people laugh when I say it. I have never particularly liked myself either. I don't think any female is ever 100% happy with how they look but we can make ourselves feel better by wearing the things we like. If we dare!

I think the problem is a lot of people are too conscious of what others think & are more bothered about whether they will be stared at if they look a bit different to everyone else. I used to be the same. When I first began working & earning money, I would often spend my lunch hours in the shops buying clothes.  I used to really like H&M & spent a lot of time there. I would buy whatever I liked but didn't always dare to wear some of the stuff out if it was a bit unusual. The whole confidence thing again.

As I got a bit older (& perhaps wiser) I began to realise that if I liked something then I didn't really care if people pulled a face at it & if I wanted to wear it & felt good in it then I damn well would!  I do like on trend clothes but I am often drawn to stuff that is a bit quirky. I went shopping with one of my carers recently & she just laughed at some of the stuff I took to try on. She changed her mind about them when she saw them on but it really didn't bother me that she didn't like them. This is a jacket I bought.. Mary Berry chic is all the rage don't you know!

My fairly recent addiction to hair accessories has also given me a lot more confidence. The other members of the Crown & Glory Glitterati group which I am part of (link here) are very cool & a pretty amazing bunch of girls. I have hair envy of a lot of them who have various brightly coloured locks & it has inspired me to do something a bit different with mine so watch this space...

Chances are if you see me these days I will have some sort of accessory in my hair & I may well be wearing something that the people in TOWIE wouldn't approve of!!

When you become poorly you kind of lose your identity a bit as you become "that person with M.E". Which I hate. So you need to make sure you do whatever you can to feel good about yourself. BE YOURSELF! And on that note I shall go & adorn my head with one of my many bits of pretty...

Ali
ME Mummy A
xx

Fun & games

When you have a child you have an excuse for playing games. Board games in particular are a favourite of mine! When you have an illness like M.E which makes it difficult to do certain stuff then playing games is the perfect solution. Low energy activity & fun ..unless you discover your child hates losing!! Or perhaps even you do ;-) My daughter never used to like it but she's fine with it now & even tries to lose on purpose sometimes so someone else wins, which kind of defeats the object!

We have a good selection of games & I have found some good bargains in charity shops too if I've been lucky. Some of the classic games are still firm favourites like Guess Who, Ludo and Snakes & Ladders. We were playing Guess Who (well, a different, cheaper version of it but the same thing!!) yesterday & we had both picked the same person without knowing. Was pretty funny when we realised at the end! Hearing my little girl laughing is my favourite thing & we always end up giggling lots so it's very good medicine!

My daughter came back from her grandparents last week with Screwball Scramble & it was a complete blast from the past. I used to love it when I was younger so was nice seeing it again. I don't think they make games like they used to but then that just makes me sound really old. Which I am I suppose!

Another favourite in our house is Orchard Toys games. Link to website here. They are educational as well as fun & suit various ages. They do have age guides on the box but even the ones for younger age groups are nice to play with the whole family. They make good presents too so can never really go wrong with them.

I really like wooden games. My favourite ones are by Melissa & Doug. This is a link to their website but various places stock their products. We have had their stuff since she was a baby as they do lovey chunky jigsaws & other puzzles suitable for tiny people. We also have a retro wooden Noughts & Crosses which always goes down well when friends are here to play.

Children seem to have a knack for making their own games up & we are often having to play some totally bonkers game that my daughter has made up! A few weeks ago we had to roll a dice & each number was assigned a different action by her. So if we threw a 1, it was something like clapping hands a certain amount of times, 2 was rolling a bouncy ball across the floor & 3 was singing a song ..you get the idea! Very random but it kept her occupied for ages. It drove me mad but she was happy!!

I remember when she was a lot smaller & never sat still, I would say "let's see how long you can lie still for" as it was sometimes the only way to get a break! It would only last a few minutes until she was up again. Kids have so much energy, it would be nice if I could pinch some of it!!

We are running out of space for everything despite donating a lot of stuff to charity recently, but it's her birthday coming up so no doubt we will have to try to find room for lots more things! Can't wait (there may be a hint of sarcasm in there!) :-D

Ali
ME Mummy A
xx

My views on the press claims that M.E patients are scared to exercise

So the good old press wreaked havoc in the M.E world this week by claims that people suffering from M.E (also known as Chronic Fatigue Syndrome - CFS - which in my opinion is a rubbish name for it) would get better if they were not frightened to exercise. Or that by not exercising they are making themselves worse! Grrrr.

And I couldn't really keep my mouth shut about it even though I should really do the usual & roll my eyes at the rubbish they print. However I feel that if we, as sufferers, don't speak up then some people "may" actually believe it. And a lot more harm than good will happen to people, especially those who may be newly diagnosed, who take what is printed as gospel.

Several newspapers reported that new research had been released & claims that sufferers were making their symptoms worse by not exercising have really angered people who live with the (extremely debilitating) condition. There is something called Graded Exercise Therapy (GET) which some people within the medical profession think will help & it is used as a form of so called "treatment". These medical people think M.E is a psychological condition (it most definitely is not) best treated with enforced exercise, which only worsens the condition's effects.   

Before I got M.E I went to the gym about 3 times each week. I loved to exercise & keep fit. I even pushed myself to keep going before I had been diagnosed but knew something was wrong. It is one of the things I have found most difficult about the condition, having to stop.  Who would purposely choose to not do something they enjoyed? How can someone fear doing something they know will make them about a thousand times more poorly? It is common sense. Would you say to someone with a broken leg to try & run on it to make themselves better? No, I think not!

Try walking (or not walking if we are being literal!) in our shoes Mr/Ms journalists & tell me if you still think what you have written is true.

I find it so frustrating that even walking a tiny bit wipes me out so much that it affects me both with pain & fatigue for days. Any over exertion, no matter how small, has the same affect. I know my limits & if I could exercise without it detrimentally affecting my health then I would be doing it already. I tried to do a ballet dvd once years ago with very gentle exercises which someone had recommended but it knocked me sideways & I felt as if I had been run over!

I do think it is important, if we can, to keep our bodies moving a tiny bit but that is very different to exercise. I mean things for example like moving legs about a little. Of course all sufferers are affected in various ways so everyone is different & it isn't always possible. I have osteopathy regularly (which I will be posting about seperately soon) to help alleviate pain. I had lost all my muscle tone when I first started going a few years ago through being immobile for so long so I try to keep moving a bit when I can. However I know what I can & can't do & on my worst days can barely move at all.

Action for ME have printed a response to the press articles & this is what they said. Link to article here here 

If it was as easy to just exercise to get better then you'd have seen me back at the gym long ago. I wouldn't even make it past reception now without feeling like I would collapse! Harmful articles like the ones this week are the reason research into M.E & finding a cure are so important. 

Ali

ME Mummy A
xx

My daughter, my sunshine

My little girl is my absolute sunshine. I know I've said it before but she is. I love reading with her before she goes to sleep & tonight after her books, she asked if she could sing me a lullaby. I think she was just doing it to stall going to bed but I thought it would be nice!

I wasn't quite expecting the words that came out of her mouth. In such a lovely tune too...
"Mummy I hope you sleep well tonight.
I wish that your M.E goes away & when you wake up tomorrow you will be better".
When she saw the tears in my eyes she said I was her precious girl. It is so unfair that I am a poorly mummy & my girl shouldn't have to see it.  But I am & she does.

Sometimes things just hit you & you are not sure how to feel. I cried at her song then laughed when she called me her precious girl. Emotion overload!

We were snuggled on the sofa earlier watching tv & I said that I could just fall asleep. Her response cracked me up. She said "oh then I would get to watch my tv all night"!!

My life would certainly be a lot more dull without her ♡

Ali
ME Mummy A
xx