Doodles and craft

I run a group called the M.E. Craft Collective over on Facebook. there are about 175 of us at the moment, but we are steadily growing in numbers.

Our health and crafty abilities vary considerably, but it is great fun to show off what we have managed, ask for help and ideas, and be inspired by other peoples work.

I have a friend on there who is mostly bed bound, while there she manages to make some beautiful cards, and recently has started sharing her doodles with us. This inspired me. Doodling was something I did a lot of when I was at school, somewhere in the loft I have homework diaries full of doodles! I used to love it, but realised I hadn't done any doodling in years. So I picked up a pen...

I've become a little addicted over the last few weeks, coming up with ideas and needing to get them down on paper. Even dreaming about the patterns in my sleep.

I am a fan of inspirational quotes and have tried to combine some quotes within my doodles.

I am not good at self promotion, I look at something I've created, especially something drawn and all I see is the faults. I always think there are people out there who can do this stuff so much better than me, perhaps I should leave them too it. But I enjoy it and I have had some lovely feedback recently.

Unfortunately all this doodling has taken it's toll on my weak wrists. I now have pain in my hand and all the way up my arm, so I think I need to take a break from it for a while, which is very hard because once I get into something I like to keep going, but I need to try.

One interesting thing I have noticed is how my brain works differently now to how it did when I used to doodle. In my teens all the doodling was there in my head, the random patterns and designs would just be there, but these days I need to look at pictures for inspiration, the ideas are there, but the patterns are not, it's like I've lost that section of my brain that produces pattern. I don't know if this is down to the M.E or just getting older, but it is odd!

Anyway, here's a link where you can see all of my doodles as they are done www.Facebook com/wonkeycreations

And here are a few of the one's I am most pleased with.

Be the change you want to see in the world

This quote means so much. It is so true.
Everyone complains about the world today, about how people don't have the respect for each other that there used to be, about how everyone is looking out for themselves and not others. Yet at the same time a lot of the people complaining don't go out there and try to change things.

Granted one person can't change the world, but one person can show others how to change which in turn could change the world.

If you go out there today and smile at people, say nice things to them, donate something to a food bank, do a good deed, I guarantee you will feel good and you will have made others feel good. And perhaps just maybe the other people touched on your journey will also go out of their way to make a difference.

There are so many small, simple ways you can change the way you live which will help so many people. Being kind doesn't have to cost anything.

Being ill has made me realise just how lucky I am to be alive, to have a warm safe home for my family, to be able to get out of bed everyday and to know that I can feed my family.

I am a firm believer in random acts of kindness. I have been researching ideas of things to do with my kids through advent, 1 random act of kindness for each day to try to teach my children that giving isn't all about presents and that it can be just as rewarding as receiving. I don't think my 3 year old will understand, but I think it is a valuable lesson for my 5 year old and I hope to turn it into a yearly tradition.

All through this year I have sent out random parcels to people, all with the intention of raising a smile, some items needed, all were appreciated. I have more in the pipeline and hope that these too will be received with a smile.

Could you smile at someome today? Compliment them? Lend a shoulder if they look in need? Could you donate something to a food bank (they are even appealing for presents if you have anything you could re-gift)? Could you donate some old bits and bobs to a charity shop instead of putting them on eBay? Could you volunteer some time to help a neighbour?

So think about it, what could you do today that could change someone else's day or even life?

Party day!

I'm awake. It's 5.30am, this is pretty normal for me, in fact I've done well to sleep in this long, was awake from 3.30am yesterday.

I  am so excited that it's the day of my party. I have butterfly's in my tummy and everything. But today of all days I need to keep my emotions in check. With excitement comes stress, adrenalin, anxiety - all ridiculously draining emotions.

Today will be busy. Even if I just sit down and delegate tasks it will still be busy with people running around, lots of things to remember, and that's all before we get to the party.

I'm fighting a virus, yesterday I felt pretty rough, not helped by the 3.30am start. I had this nasty feeling like I had a scarf tied around my neck too tight and all day I kept forgetting words and was really struggling to put sentences together.

I hope today for he party at least my cognitive functions will pull themselves together and all this achy ill feeling will be put on pause.

I know already that I will look and behave like a normal well person, in fact I expect I will hear 'you're looking well' more than once today. But come 6pm when everyone has gone I will collapse into a heap and barely be able to speak.

It will be worth it, I will have a great time. I just hope the payback doesn't last too long...

Anyway, back to trying not to feel too excited. 

Wish me luck for today friends!

Food and M.E.

When I started this M.E.. relapse in February 2013 I was getting all sorts of symptoms I had never had before. Chronic heartburn, indigestion, and dizziness to name a few.

In June one of my friends suggested I try cutting out gluten. This was a challenge as bread and pasta have always been some of my favourite foods! But within a couple of weeks I was noticing some major changes. The chronic heartburn and indigestion had mostly gone, and after a couple of months the dizziness went away as well!

I was however still getting some stomach cramps and occasional heartburn. I went to the Drs and it was suggested I try going on the fodmap diet. This has hugely helped, but is very restrictive.

The more I have paid attention to how I feel verses what I eat the more I have had to cut out. Once a food has been removed from my diet it is very hard to reintroduce it. I think this is because I then expect to react to having eaten therefore I do react - I guess this is a negative placebo effect.

I saw a nutritionist a few months ago and underwent Vega testing - which I read up on after the testing and can see why medically it is seen as a joke. Even the lady testing me couldn't tell me how it worked. However there seems to have been a lot of truth in what this machine told me I should be avoiding. In fact I think there is only 1 food on the list which I have reintroduced with no ill effects. Though there are plenty I have problems with that weren't on the list!

Generally it seems with M.E. it is helpful to cut out caffeine, alcohol and sugar. Caffeine was easy to let go of (though I still have 1 real tea in the morning). 

Alcohol I still miss, but even half a glass of wine gives me a 2 day headache, so it's just not worth it.

Sugar on the other hand has been hard. I've tried baking with reduced amounts of sugar, different types of sugars and syrups, but the only thing which doesn't send me into a crash now is molasses syrup, specifically in flapjacks (which I now live on). Also fruit seems to be ok - of course excluding the high fodmap ones.

I do feel sad sometimes that I cannot eat the things I want to eat. Today I have a nasty cold and I would like nothing more than to have a nice bowl of soup out of a can with a stick of garlic bread, but there are so many things in that combination that I cannot have it is totally out of the question, the result would inevitably make me feel worse than I do already!

I hope one day that I will be able to eat at least some of these things again, but for now I am stuck in a land of plain meat, rice, and fruit and veg! 

So I can no longer have gluten, dairy, alcohol, caffeine, sugar or nuts - basically I'm no fun at a party, or I'm a very cheap date!

It's a small world

Having M.E is like living in a very small world.

Often with M.E. your whole world is your house. Anything outside it is scary and out of bounds. And even then a lot of things inside your house you cannot do. It is frustrating, you can see all of these things that you want to do, but know that you can't. 

It's hard looking at jobs knowing you could have achieved all of them in a day when you were well, but knowing it will take a month or longer to do the same jobs now.

If you are unlucky enough to have severe M.E then your whole world is very small, probably only as big as your room. 

At the moment my whole world is my house, and the school run. On a good day the beach might be a possibility and on a really good day, or knowing I need to but that there will be payback my local shops might get a visit. 

Even with my slightly expanded world I still find anything outside the house a little scary. 

I have had to find a way to look around the house and prioritise. There are always things that have to be done everyday, there are other jobs that can wait till tomorrow and there are hundreds more jobs waiting for some other time (or other person) to do them!

I am still getting better, but progress is slow. 1 step forwards 2 steps back is how it feels at the moment. But all I have to do is think back to a year ago to see that I AM getting better.

Me time

Today was my youngest daughters first day at preschool. It was the first time she has ever been without either me or her dad.
She was brave, took it in her stride and I am very proud of her.

So from now on I get 2 and a half days a week without either child. The first time for me I have had in 5 years!

It was very odd leaving her there today and walking around without her leading the way, I suppose I will get used to it, but it will take a while.

So, what am I going to do with this new found time?
Today was only 2 hours, and I didn't dare leave the grounds, so I sat in the children's centre making paracord keyrings & bracelets, and cutting out various bits and bobs the staff there sent my way (it was very busy in there today).
I picked up some forms while I was there with the idea of volunteering some Monday mornings, when I read the form it made me laugh. I need 2 references who are not friends or family... I haven't worked in 5 years. My last direct boss was my husband, though I may still be able to find someone at the company who would vouch for me. For my second reference I would have to go back 8 years. How on earth could any reference from either of these bosses be at all relevant to volunteering at a children's centre?
The staff at the centre have seen me pretty much every week for the last 5 years (with a little gap when we moved away), surely if they don't know me no one does?

So, tomorrow I have from 8.45am until 3.15pm with no children. It is going to be so strange.
I know I need to not do too much, but at the same time there is soooooo much that I could do! I have orders that need making, many projects that need starting. A house which needs organising, tidying, cleaning.

The thing I am most looking forward to doing is listening to some of my music, loud, and singing without being told to stop by one of the children, or dragged off to help with the toilet or to stop an argument.

I will try very hard not to do too much else. It will be so easy to overdo it and be useless for the rest of the week.

I AM getting better and this free time could give me just the rest I need to boost my recovery - well here's to hoping anyway!

Waiting for the crash

Crashes are strange things

Sometimes if I have a friend round for the afternoon I can feel myself getting more and more tired and by the time they go I can hardly move. I think of this as a mini crash as it doesn't seem to flow over into the following days (or not too badly anyway).

Other times I seem to be able to get away with doing much more but the crash is delayed. 

Take this week for example, I went on a mini holiday. 5 hours in the car there, 2 nights in a hotel, 7 hours in the car on the way home. That in itself is exhausting, but then add to that I was constantly surrounded by people, family, children, noise. During those 3 days we ventured to 2 parks, an animal petting farm, had a picnic, went to 2 cafes and went out for dinner. Also on the drive home we stopped at a shopping centre and got my 2 girls measured for new shoes.

I was very much expecting to wake Saturday morning and find myself in crash mode, but I didn't. All day I was waiting for it. I sorted all the holiday stuff and put it away, did the washing, still no crash... We went out to get the few bits of school uniform needed for next term, still nothing... I cooked a nice dinner, now quite tired but not what I would call crash.

So when will it come? 

I know it will come, but when? 

It's an odd sensation feeling well when you know you shouldn't. Kind of like living on borrowed time, or borrowed energy.

I know I need to take it easy for a few days now, because the energy I am feeling isn't real. If I keep going like I have been it will catch up with me and the crash will be far worse. But how do you stop yourself being busy when you do feel up to it? How do you do less than you feel capable of doing? 

These are questions I will never know the answer to, yet I will constantly ask.

Friendships

I have always been one of those people who gets on with everyone, who doesn't stand out from the crowd, doesn't voice opinions and spends a lot of time in my own company - with or without the ME.

Perhaps this is why when I was a teen I liked having my hair various shades of blue and purple. It made me stand out a bit and became something of a conversation starter.

I have always had trouble making friends. Perhaps I come across as odd, I don't know...

When in a group of people I tend to have trouble contributing to conversations, not because I don't have anything to say but because I can't find a way in. I usually try a couple of times and then give up and sit there smiling and nodding. Again this has always been the case with or without the ME.
The ME does make it harder as when I do talk I loose my train of thought easily, forget simple everyday words and muddle my words up, especially when I'm a bit tired.

I had some good friends when I was at school, but once I left at 16 I gradually lost touch with them. We are still in contact thanks to the joys of Facebook, but I wouldn't call them friends in the true sense. In that we don't talk regularly, we don't share our lives - more than just reading what the other is doing, and we can't depend on each other for support when needed.

I suppose though these days it isn't all that clear cut. I have good friends online who I can moan to if I'm a bit down or in need of support. I have friends locally who can help me out if I need something from the shops, or help with the kids.
What I miss is having a friend that comes round often for that cup of tea and a catch up.

Pacing

Pacing is the best thing you can do if you have M.E.

It means taking it easy, never doing more than you are capable of, in fact never doing as much as you are capable of.

My specialist (in my teens) said never do anything today that you wouldn't be able to do tomorrow. So if you're having a good day today and feel like doing a bit more than usual, don't!

He also recommended never doing anything for more than 15mins at a time. So you can watch your favourite TV show, but only for 15 minutes, then you have to go and do something else, something completely different like ironing (just an example never happens in this house!).

Pacing as a teenager was relatively easy as I had no commitments, no deadlines, no need to do anything. Having said that I was still pretty hopeless at it. If I was feeling up to it I would watch that whole film, read all of that book I was enjoying, generally not follow the rules.

Pacing with 2 small children underfoot is even harder.
The bare minimum; meals have to be chosen, shopped for (all be it online but with brain fog even this is tough), prepared, cooked. Clothes have to be washed, and the house kept in order. Children need to be delivered to and picked up from school not to mention entertained and refereed!

I am fairly stubborn and a parent, so often feel the bare minimum is not enough. Therefore when I am feeling good I forget all of the rules, we go to the beach, we go to the shops, or to the park, basically I go that extra mile, use up all of my energy to try and make my kids lives that little bit more fun.
This always backfires when I then crash which means even the bare minimum is too much...

Will I ever learn how important pacing is?

Every bug is scary

For most people catching a bug is inconvenient, and never very nice. 

For me catching a bug is one of the scariest things in the world.

To start with you don't know if its actually a bug or if it is a crash, a contamination of food, or just some lovely new symptoms to add to the list.

You try to carry on, plodding through the daily to do list until the bug takes hold and in my case this week leaves you passed out on the floor.

So then you take it easy and you hope it will pass quickly - just like any normal person would.

Now 4 days on I should be feeling better, but the overwhelming fatigue is still here. I cannot stand or do anything for very long, and I daren't even consider leaving the house under my own steam.

So then I start wondering is this just a bug or has it struck me back into relapse?

I feel today how I felt a year ago. 

I have worked so hard in the last year to get myself back to what almost resembles normality. To have all of that taken away by a small insignificant bug is just not fair.

I've written this to share my worries, now I shall go back to thinking positive. For one of the awful catch 22s of M.E is the more you worry and stress about it the longer the recovery will take.

Social media

Everyone has a different reason for wanting to or not wanting to use social media.

I have friends who don't use any of it, some who will only use Twitter and others who only use Facebook.

Personally I use both but for different things.
I have most of my friends and family on Facebook and love that it means I can stay in touch with everyone, share photos of my kids and activities, share ideas, ask questions, and generally keep up with the world even when I am not well enough to join it!

On twitter I have a couple of friends (ones who won't use Facebook), but mostly I use twitter to connect with people I don't know, other #spoonies, like minded people from all over the world. I'm still learning how it works, but I kind of like it.

I have heard said that Facebook is where you learn to hate your friends and Twitter is where you learn to love strangers. I can see the truth in that. Facebook can be irritating with all the horoscopes and chain mail, but I like that you can choose exactly who see's what you are posting, whereas on Twitter anyone can see everything you post. But on the other hand I like how anonymous you can be on twitter, you are just a voice talking to the world in general, rather than just your 'friends'.

The world of social media is there to 'keep you connected', yet it can be the loneliest of places. If you are having an off day or feeling down you go to these places for a pick me up, but all you see is hundreds of people enjoying life, doing things you wish you were doing. Often the day you really need someone to comment on that seemingly flippant post you just made, is the day that no one is paying attention.

For now I am addicted. I am trying hard to cut back on the time I spend on social media as it will always be there, but my kids will grow up. I don't want them to look back at their childhood and see me glued to an electronic device reading pointless nonsense all day long.

There is more to life than the internet.

Music, dancing and me

As a kid I remember always having music.

My dad played double bass in a jazz band, some of my earliest memories are of going to gigs.

As I grew up I was always 'borrowing' my mums and my sisters cassette tapes and learning the words or making up a dance to go with them. I particularly remember borrowing a Roget Miller cassette from my mum. Then later Levellers and Carter USM from my sister.

I remember in primary school putting a band together with a friend of mine - though mostly we made up dances to songs on Now 23!

Going up through secondary school I enjoyed singing in the choir, I tried a few different instruments, had singing lessons. I enjoyed socialising with the alternative crowd, rock & metal night clubs, moshing - about the closest thing to dancing I did in my teens!

Every new album I got I would sit down and listen to over and over again trying to learn all the words. It still amazes me if I listen to an album from that time how well all the words have stuck.

I was always big on the words. Tried writing poems in my teens, very angsty, unrequited love type things, I still have them in a box somewhere.

I never got into mainstream nightclubbing, went a couple of times, but really wasn't my thing,

I spent a bit of time in my late teens working with a friend of mine on the door at the 100 club in London for the Sunday night swing cats club. I loved the music, the atmosphere and was amazed by the dancing! I always hoped that one day I would be able to go back there and dance like that. I still have two much loved CDs from that time, Ben Waters, Shakin' in the makin', which I still dance around the kitchen to regularly, and The Fat Cats, Keeping up with the Dow Joneses, which I must dig out and play again!

I was about 19 when I went to my first Ceroc (modern jive) night, and was amazed to find how easy it was! I loved it, quickly went from going one night a week to going as often as I could, sometimes 3 or 4 nights. I was hooked. I danced and I danced until I met my husband, who didn't like the idea of dancing... I still went once every now and then, but never regularly.

I've been maybe 5 times in the last 5 years (since we had our first child), and now with this relapse dancing feels just out of my grasp. But then 6 months ago going into town to run errands was just out of my grasp, so I can do this!

It is such a wonderful feeling being on that dance floor, being led by someone else, not worrying or caring about what you look like or if you're doing it wrong, but just going with the flow.
Now I think about it I could say the same thing about moshing in my teens, it had nothing to do with what it looked like, but everything to do with how it made you feel.

Painsomnia

This should be a real word meaning you can't sleep because of the pain.

I am very lucky with my M.E. that intense pain isn't an especially consistent symptom.

Yes I suffer aches and pains, and I get headaches almost everyday, but it is usually bearable.

Unfortunately every now and then I am wracked with pain. Pain in my lower back, left hip and left knee. There is no rhyme, or reason for this pain. There is nothing I can think of that triggers it, it just happens.

I had never experienced pain in these places until during my first pregnancy. During pregnancy it was called SPD, the pain I get now is very similar.

The biggest problem with this pain is sleeping. Or more to the point not being able to get comfortable enough to sleep.

When I suffer with this I feel the answer to comfort would be floating in a pool of water, so after a terrible nights sleep last night that is exactly what I did this morning. Nearly an hour in the local swimming pool to take the weight off.
Feeling good at the moment, if a tad tired, but we will see if it helped!

Could I not just take some tablets for the pain?
Well I can take paracetamol, but that doesn't do much.
Ibuprofen gives me stomach pains, co codamol makes me feel very strange and doesn't do much more for me than paracetamol...

Perhaps the answer would be a hot tub in the garden!

Minimalism and me

I grew up in a house full of things.
I know everyone lives in a house full of things, but this one really was full.

My mum is from the school of 'it will come in useful one day'. She has often been proved right, and when she has gotten rid of something within 6 months she has found a potential use for it!

I have never been quite so much of a hoarder, but I have still managed to accumulate a fair amount of stuff. Something that was bought to my attention recently, having moved house for the second time in 2 years. It was surprising to find what hadn't been used in between the house moves, indeed some things hadn't even been unpacked.

When we moved in October I was still very unwell with my relapse. I wasn't able to do anything for very long, quickly exhausted. Doing the bare minimum for my family day to day was almost too much.

It felt like for months every where I looked in the house there was something that needed doing, boxes that needed unpacking, a room that needed cleaning or organising. It was completely overwhelming seeing all that needed to be done and knowing I couldn't do it all.

I did try. I did far too much everyday and was a tearful wreck by bed time, and unable to do anything on the weekends.

After Christmas I came across a book called Clutter free with kids. It completely changed how I look at the things that I own and what we need to live.

So I started selling things on local selling boards.
I ordered some sacks from 'Clothes for Charity' so that all the money from my donated clothing would go to Invest in M.E.

With every item, box, sack that left the house I felt lighter, energised, more in control.

I thinned out my kids toys, back to basics and favourites and you know what, they haven't even noticed. Fewer toys for them to throw over the floor, fewer toys to have to tidy up! Everyone's happy.

Now the lounge is a lovely tranquil place, I rarely look around and shudder at all the things to tidy up and clean. As less stuff really does mean less work.

I haven't finished yet, I still have a couple of rooms to do and a loft full of toys to sort out!

I went to visit my mum recently and although I thought I would be fine with all the stuff, after all its not my house so not my problem. I still found it a little overwhelming. Overstimulating. So much lovely stuff, everywhere you look there is something interesting or pretty to look at! It is amazing how much your surroundings can effect how you feel.

Theatre and me

In my first year at secondary school I accidentally put myself forward to help out with props on the schools Christmas production. I had meant to offer to help paint scenery, but being little and shy I got my words muddled up and ended up helping with the props. Possibly the best mistake I ever made.

I loved it!

I worked technically on every production possible at that school.

When it came to choosing options for GCSE I chose P.E without thinking too much about it, I had always loved sports. I was turned down. 

My drama teacher then casually suggested I take drama GCSE instead, this had never crossed my mind as an option, I hated drama, still one of my least favourite things is having to stand up in front of people and be noticed! But he told me I could do Stage management as my drama GCSE. I would still have to participate in the practical lessons but my marks would be on my technical work. - I still have a great deal of respect for Mr Evans. I think everyone has one teacher who change's the course of their life and he is mine.

Of course I still had to act, and I even had to perform in a small production due to a classmate not turning up, but it did me no harm, in fact it helped to give me the little bit of confidence I have now.

By the time I left school in 2001 I was certain all I wanted to do was have a career in technical theatre. I started a course at college and was on my way. Unfortunately less than 2 months into this course is when I fell ill with M.E. Completing the course became an impossibility. 

My tutor at the college was adamant I could not work in theatre without qualifications. 

I think one of the things that helped to pull me through my M.E. was the thought that I really did want to work in technical theatre, and that I wanted to prove my tutor wrong.

Of course I had to get myself well first. Once I was well enough I started building up my ability to work. I began with a couple of hours a week in a charity shop sorting donations - a fascinating job, which I did for maybe a year. Then moved onto bar work, starting at just 8 hours a week, then building up to 40+ over the course of 2 years. That's when I knew it was time to pursue my dream again.

In 2005 I was given a fantastic opportunity to work as a casual technician at the Hazlitt Theatre Maidstone. I helped on a couple of shows, then did the panto with them that year as assistant stage manager & sound #2, an experience I will never forget! A 90 hour week followed by 4 60hour weeks, a job not for the faint hearted, but I survived!

I continued to work there through 2006 as a casual technician, bar staff and general all rounder. Then a friend of mine offered to put in a good word for me at the larger local theatre the Marlowe in Canterbury. I sent off my CV, and in March that year got a phone call from the Chief Electrician at the venue offering me a couple of weeks work follow spotting the Easter show. I loved every minute of those 2 weeks, the team were friendly, the job was great. I was very sad when the 2 weeks were over. 

At this point perhaps I should note that I went on to marry the Chief Electrican (Ben) from that theatre!  

When a permanent position arose at a smaller venue in Canterbury in the September of that year Ben talked me into applying. I got the job! I proved my tutor wrong. A full time job as a technician in a local theatre with no qualifications. I enjoyed it there, though I didn't get on that well with my team. I left in May of 2007 returning to the Marlowe to work as a casual technician, box office assistant, and bar staff. Turns out I quite enjoyed having lots of little jobs. I worked my last panto as a follow spot operator while pregnant with my eldest - quite an experience. 

I can't see me ever working in a theatre again, especially now I have kids, and after my recent relapse. But I am very glad I got to do it when I did. Lots of happy memories.

Meet Wonkey

This is how my business and blog got their name.

I once owned a gorgeous motorbike. It was a Yamaha Virago 535, in a custom metallic purple. I loved riding this bike, the wind rustling past, the freedom, loved it!

I changed a few things on the bike once I got it, some through necessity, like the exhaust, others just because I could, like the wing mirrors. Trouble was the pretty shiny wing mirrors I chose looked great, but I couldn't see past my right shoulder with them... So we popped a different mirror stem on that side.

This made the bike look wonky, and so the name stuck!
But I hear you say, that's not how the business/blog is spelt. Well words have never been my strong point, and spelling even less so. When I created my business page as Wonkey Creations I had no idea I had spelt it wrong, but I'm happy with it, it still reads the same and well, its me!

The daily fight - but you don't look sick...

Everyday I am fighting this illness.
But you don't look sick - I hear you cry.

On a bad day I feel like my limbs are made of lead, they are heavy and hurt to move.
My head aches, my eyes are heavy and swollen.
I have all manor of digestive problems, always having to look carefully at everything I eat.
I can't form sentences, I struggle to find the right words.
I'm dizzy, nothing is quite how it should be.
If I have to go out then it gets worse because anxiety kicks in. Not a fear of going out, but of suddenly developing a new symptom, or passing out randomly.
Over stimulation, noise, heat, light, people, can all be too much.

But none of this you can see.

On a good day often my head still aches, my eyes are still puffy. I still struggle to find words, and over stimulation bothers me.
That's why on the dullest of days I will still be wearing my sunglasses - special skiing ones which still aren't dark enough sometimes.
If we go to a toddler group we try to be first in, as once it gets busy the noise, the heat in the room and all the people is too much for me to bear.

I love having people popping in for a cuppa and a natter, it makes me feel normal, though tires me out quickly.
It doesn't happen often though as people have their own busy lives, sometimes it feels like we are caught in a time warp, standing still while the rest of the world is running around us.

So yes I might not LOOK sick, but believe me I'm still fighting.

P.S. I've just realised I haven't mentioned fatigue in all of this!
Fatigue is of course the one symptom which is always there, some days worse than others.
You know how you feel at the end of a really busy day where you've been running round non stop and you can not wait to get to bed. That's how I feel when I wake up most mornings, before I've even gotten out of bed...

Birthday Bash

I like birthday's, I especially like birthday parties, I think it gives a good excuse to get together with people, especially for someone as unsocial as I am these days.

I had a big party for my 18th (feels like a million years ago), this went well, lots of people came, it was great! I tried to have another for my 21st, still had a good time, but not many people came.
I decided a couple of years ago that I wanted a big party for my 30th.

Then I got hit with this m.e. relapse... and I am more determined than ever not only to have a good party, but to get as many people there as I can.
I see this party as a celebration of life, I am still alive after all!

I can't go out and socialise, I can't go dancing like I used to, I don't see friends, or family as often as I would like, and there are some people who I haven't seen in years, but would love to see again. So to gather everyone in the same room for a few hours would be amazing. I hope to manage a dance or two too.

I suppose I also want to gather all these people so they can see me, meet my kids, my friends, my family. The people I have invited I see on Facebook or twitter or on the school run, they only see that portion of me and it will be nice to bring them all together.

I imagine I will crash after the party and won't be able to move for a few days, but it will be worth it.

Kermit the electric tricycle!

16/06/2014

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Last summer I was very worried about how I was going to get my eldest to and from school.
The school was not that far away, not even 1 mile, but I simply could not walk that far.
We knew no one else going to that school who could help. My mum suggested a mobility scooter, great idea, but they are expensive and how was I going to get the kids on board?

Then my husband came up with the idea of an electric tricycle. Initially he thought we could buy a tricycle, convert the back to a bench seat for the girls then buy an electric conversion kit.

Luckily we found the perfect tricycle! It is called a "Child Transporter" and it came from a company called Mission Cycles near Maidstone in Kent. We then found and electric bike shop in Swindon E-Motion who were happy to do the conversion, so they got the trike shipped in, built it, converted it and christened it Kermit!

We have had ups and downs with the electrics, but I wouldn't be without it, it is wonderful!

M.E. the relapse

In the early months of 2013 I was very stressed, I suffered a chest infection followed by an ear infection and just didn't pick up. 

My gp said that it was post viral fatigue and I would improve after a few weeks. My mum said it could be my m.e. coming back and I should start following the rules again. I should have listened to my mum!

It took me the best part of 6 months to come to terms with the idea that it was the m.e. back. I had to stop driving due to the dizziness and fatigue that had taken over my life.

We moved back to Whitstable in the October of 2013, which very much helped with the reduction of stress!

When we moved back the idea of having to get my eldest to and from school was scary. I knew I needed to take my youngest to toddler groups and that was daunting, and going into town to run errands was out of the question.

Now 7 months on I can manage the school run with out becoming a tearful wreck by Friday. I can go to the odd toddler group, although I do struggle with these due to the over stimulation, noise, people, heat. And amazingly I can even get into town using my electric tricycle and run errands! 

I am amazed with how far I have come, and I hope I will continue to improve and perhaps next time notice the warning signs.

M.E. in the beginning

I first fell ill in 2001 at the age of 16. I had a nasty bout of tonsilitous which antibiotics wouldn't shift and some nasty stress in my personal life (which I won't go into). 
After 6 months of not doing much other than staying in bed I was sent to see a specialist in Tilbury, he gave me the diagnosis of Chronic Fatigue Syndrome (CFS), otherwise known as Myalgic Encephalomyelitis (M.E.)

By this point I had been thrown out of college due to my not being able to attend and didn't have any structure in my life (unless you count watching Neighbours).

I was advised to create a routine, and do everything in 15minute chunks. For example I could read a book for 15 mins, but then my next activity could not be a mental one (TV, computer, etc).  

I followed the rules as best I could, bearing in mind I was a teenager! I built on what I could do slowly and by the time I was 21 I would say I was fully well and in my mind would never be ill again! 

I lived a normal life for the next 7 years. I worked, I passed my motorcycle licence and enjoyed a few summers of riding, I got married, had 2 kids, re located and then bam...