This is me.

This is me, take me or leave me.

I am a shy person who occasionally does bold things like dye my hair blue, or shave it all off.

I took GCSE drama, performed in the school choir, and love to dance, yet one of the things I hate most is getting up in front of people and being noticed.

I also hate talking on the telephone and do avoid it as much as possible (apologies to those who do try to phone me).

I like wearing unshapely comfy clothes, which yes mostly come from the men's section in the clothes store, and yes tend to make me look boyish - especially with the shaved head. This does not mean I wish I were a boy, I just like to be comfy and I value that more than being accepted.

I do not wear makeup. Once upon a time I did try. I didn't like it. I think people are beautiful as they are and there is no need to paint on a face for the world to see. However I can appreciate why people like it, and that some use it to hide behind. I hide behind my sunglasses, I feel slightly uneasy on really dark days or rainy days when I can't wear them.

Vanity is a stress I do not need in my life. 

I'm beginning to learn that wherever I am (my home excluded) I always feel a little out of place, that is just me. 

As an adult I'm still not sure how to make friends. When the kids were younger I'd instigate play dates, but how does it work when they are at school? I chat to people online all the time, that is easy, but in real life? I struggle... I feel awkward and chat does not flow. I guess this will get easier with practice.

I like doing nice things for people. I like giving gifts when they are unexpected or needed rather than when it is appropriate to. I have just joined a Happy Mail group which I hope will open my eyes to new ways in which I can make people happy.

I feel like I am writing to justify myself, which isn't needed, but I'm writing it anyway.

Scared

Earlier today I wrote a post about having my hair cut off, which is all very well and good and some may find interesting, but it has totally masked how I am actually feeling about life at the moment.

Last week my youngest started school. The school run generally I struggle with and on my bad weeks I have been known to be a tearful wreck by Friday. Last week I was a tearful wreck by Wednesday... I put this down to the added anxiety, stress of my youngest starting school. Although I wasn't worried, I knew she was going to love it and be fine.

My lovely monsters shared their back to school cold with me so that hasn't helped this week, and actually I managed a little better, I wasn't a tearful wreck until Thursday! And I managed to get my paints out Wednesday - which is a mega bonus.

But Thursday, Friday and now today I have been completely and utterly drained. On returning from taking the kids to school I have sat down and pretty much not moved until it was time to pick them up again. 

This huge backwards leap in energy has me scared. Scared that I am not improving but in fact getting worse. This is of course unrealistic thinking. There are always set backs, especially when routine is changed, and I never remember how bad the bad days are after a spell of feeling a little better.

As I write this I'm getting a sense of de ja vu at having written something very similar before, which only emphasises the fact that you do almost immediately forget how bad it can get.

So please excuse my ramblings, I obviously needed to write this in order to help me remember that this is how it goes and it will get better again.

Confessions of a hairless ME

Well it has been one week since I took the plunge and shaved all my hair off!

In the week leading up to the event people kept stopping me and asking if I was nervous - I was not. Then people seemed keen to come and watch, so I opened it up to have people around to watch.

On the morning of the event I was exhausted and more nervous about having an audience then I was having my hair shaved off!

Half way through the cutting my eldest daughter (6) disappeared upstairs, when it was finished and I went to find her she was in her bed crying and she wouldn't look at me. She said she didn't like my new hair. I told her to remember that I was still me and what I look like makes no difference to who I am. She did eventually appear back downstairs (with a little hot chocolate bribery), and after not very long was wanting to take me out and show me off to everyone!

My husband who is hairless had warned me that it would be cold, but I wasn't quite prepared for the sensation of having no hair!

It has been a cold rainy week here, so mostly when leaving the house I have been in a hat. Not because I don't want to show off my new hair, but because I'm not quite ready to get a cold wet head!

I have managed 1 or 2 school runs without the hat which have only met with positive comments.

But here are my 'confessions'.

I couldn't look in a mirror until Wednesday without thinking "wow that's strange, what did I do!"

I can't stop running my hands threw it - it is a lovely feeling.

It is surprisingly cold and I have spent much time in the house wearing a hat!

I am amazed at how quickly it grows!

It does look better than I had feared it might, though I don't love it as much as I had hoped!

It has taken away the irritation that I often feel with my hair, but has left me with a new irritation, but I am hoping that will pass as it grows a little.

All in all I am thrilled with how much money I have made for the ME Association, very pleased I have finally gone through with it, and haven't experienced any negativity only a couple of odd looks and double takes.

Sponsored Head shave

I was first diagnosed with ME when I was 16. I was lucky enough to spend most of my 20s in good health, but unfortunately nearly 3 years ago this awful illness struck me down again.

Very little was known about ME when I was 16, and not much more is known about it now. Despite being a chronic, uncurable, debilitating illness which effects thousands of people around the world there is very little research done.

When I was 16 ME was just coming out of its darkest days of being known as yuppie flu and being laughed off and was just beginning to be treated like the serious illness that it is. 14 years later and it still feels like it is just emerging. There are many people like me who are battling to raise awareness amongst everyday folk. Social media has made it much easier to inform the masses and get the word out. But a lot of GPs are still stuck in those dark ages, wanting to laugh it off and not treat it seriously. This is why so much more research is needed, to give the GPs something solid to hold onto.

Many sufferers experience sensory overload, we become hugely sensitive to light, sound, smell, touch. You will very rarely see me outside the house without my sun glasses, even on a dull day. Others have to wear ear defenders, steer clear of strong smells, busy places.

One of my sensitivities is touch. I can no longer stand to wear jewellery, i often need to wear big baggy clothes which don't restrict me at all, and my hair really irritates me. This is one of the reasons this seemed the perfect fundraising for me, shaving my hair off is something I threaten on most bad days and now I will be able to see what it would really be like and at the same time raise some much needed money and awareness for the ME Association.

I asked my 6 year old daughter how she felt about me shaving my hair off and her first response was "nervous", so I asked her why nervous, she said "nervous of what other people will think".

I was shocked that my 6 year old already has preconceptions of conforming and worrying what other people think, this gave me all the more drive to go ahead and show her that it really doesn't matter what you look like, or what other people think, you are you and that's all that matters.

So on September 12th my husband will be shaving my head for me - and I can't wait!

To sponsor me visit www.justgiving.com/joME

Or Text JOME85 £5 (or any amount) to 70070

"It's Real, it's Physical, it's ME"

Holiday ramblings

The end of this week sees the beginning of the summer holidays for my children. This brings with it a range of emotions, pride, relief, sadness, frustration.

My eldest will be going up to year 2 and excitedly started her new class this morning.

My youngest will be starting year R in September. I am so proud of how she has come on in the last year. She has gone from a shy girl who would barely say 2 words to a confident, never stops talking whirl wind! She is going to love school.

But it also sees the end to me being a stay at home mum. I should be getting excited about looking for a job, going back to work. But I can't. I can't begin to describe the sadness and frustration at not being well enough to work.
A few people reading this will be thinking "oh I wish I didn't have to work", "you're so lucky being able to stay at home". But believe me when I say I am not. It is lonely being at home when everyone else is at work or school. It is frustrating not being able to bring any money into the family.
I should be looking on the bright side, think about all the extra rest time I will get that will aid my recovery, but it is hard always looking for the good points.

Holidays in themselves are hard. When the kids were little I would dread the summer holidays. 6 weeks without our usual routine of toddler groups. Now I find relief in them. Yes I will have 2 stir crazy children to entertain for 6 weeks, but I won't have to leave the house twice a day 5 days a week so I really can spend all my spoons on them!

I did recently have 2 and a half weeks of feeling great. We went on a family holiday and we walked, swam, scooted, disco'd and even climbed a light house! I managed to keep the momentum going for a while after we got back which was great, made me realize what life should be like. But then life happened, and I crashed. But I will get back there again.

I'm also struggling a bit with social media at the moment. I used to say that being a part of these sites meant I could live vicariously through my friends and family, but recently I've been finding it hard seeing people doing things that I wish I could be doing. So if I am a little quiet it is because I am avoiding my timeline. I am still looking at notifications though and posting the odd thing.
This is good really because I spend far too much time on the computer which is not good for my pacing and I will have far less time to look during the holidays.

I'm sure I will be back to my happy smiley self again soon. In the meantime bear with me.

Sorry for the ramblings, clearing my head.

Different types of tired

Through having M.E. I have come to learn that there are different types of tired.

In everyday life;
There's the satisfyingly tired where you've been busy, exercised, achieved things and are then worn out by the end of the day.
Then there's the frustratingly ill tired where you can't move no matter how much you want to get up and do things you just can't.

When you add M.E. into the mix it gets trickier. For when you are satisfyingly tired through having done something, perhaps too much, you're body aches and the chances of actually being able to sleep well are greatly reduced.
Then when you are ill tired, although now perhaps able to sleep no amount of sleep will fix this state of tiredness.

On a slightly related note, I bumped into a friend yesterday who I know has been feeling under the weather lately so I asked how she was feeling. She was about to answer then stopped herself and said she really can't moan to me about it. I realise I have been particularly active in advertising my M.E. (With last week being M.E. awareness week), but I believe everyone has a right to moan if they are feeling rubbish no matter what the circumstance.

Everyone is fighting their own battles and your level of hardship is still hard to you even if it feels insignificant next to someone else's.

Some of my M.E. friends have it a lot worse than me, they struggle day to day with severe M.E. are housebound apart from hospital appointments, but still offer unconditional support to me and others with my level of the illness even though we are significantly healthier.

Having M.E. doesn't make you uncaring for others with minor ailments, if anything it has made me even more mindful of looking out for others feeling rough, and offering them my care and attention, probably because I know only too well how lonely it is to be ill.

"People will forget what you did, people will forget what you said, but people will never forget how you made them feel" - Maya Angelou

Fighting

Today I am feeling very sorry for myself. Having been hit on Monday by a 12 hour tummy bug I still feel horrible.

Last year I had a mild tummy bug and it set me back months on my recovery. So today is filled with uncertainty on top of the wobbliness and exhaustion from doing the smallest of things.

There have been tears every time I think about the coming weeks or even days. Trying to figure out how to make what is usually doable happen now that it is not.

I hate this struggle. But I will fight on and I will win.

But it is not all doom and gloom. My nearly 4 year old has done a lot to make me laugh today. My friends on Facebook have also done well at making me laugh - my world would be very lonely without my virtual family, some of course are real family, some I have never met but are just as supportive.

A very short post today, but I've been trying and failing to write something for a week now!