16/01/2015

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

11/01/2015

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

09/01/2015

Competitions!

Something fun I do when I feel upto it (or can be bothered!) is entering competitions, mainly on Twitter. It has become a bit of a joke amongst my friends & family that I always seem to win!! I never won anything until I joined Twitter & I seem to have just been really lucky since.

Most of the competitions are where you re-tweet a tweet. For those not familiar with Twitter it is just sharing the competition tweet on your own timeline, like sharing a post on Facebook. Sometimes you have to answer a question but it's never anything too testing! A good day for them is a Friday when a lot of places run "Freebie Friday" prizes so it's a busy day in the online competition world ;-)

The first thing I won was some Sleep-In Rollers, which came with some lashes & spray tan. Then not long after I won some more so I had them sent to my friend!




Since then, I have won various things but I only enter the ones I actually want to win! Some people go for every one going & I often wonder what on earth they would do with the prize if they did win it as there are some bizarre ones. The buzz of winning takes over I suppose!

One of the best things I think I won was a heated throw by Dreamland. I already have an electric heatpad by them & had wanted one of the throws so when I won I think I probably did a little happy dance! They are so cosy & don't take long to warm up. Plus heat helps with my M.E pain so it's brilliant.



Some other stuff I have won include (from the things I can remember!!)
Make up
Nail polish
Handbags
Vouchers (I won another £50 one on New Year's Eve for F&F at Tesco... woooo!)
Chocolates
Games
Jewellery
And today is Freebie Friday & I have just won some fudge!!











You do get a buzz when you find out you've won & it doesn't take long to enter so providing you have the energy it is worth trying! Have fun & let me know if you've ever won anything :-)


ME Mummy A
xx



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