Thursday, January 21, 2016

Little Miss Brainfog

Little Miss Brainfog lived in a normal house in a normal street, surrounded by normal people.

Little Miss Brainfog also looked normal, but had an illness with and extraordinarily long name, Myalgic Encephalomyelitis, which it is easier to call ME.

Like it's name Myalgic Encephalomyelitis is also rather complicated and extraordinary.

The illness made Little Miss Brainfog feel like ; Little Miss Dotty, Little Miss Scatterbrain, Little Miss Fickle, Little Miss Whoops, Mr Bump, Mr Topsy Turvey, Mr Forgetful, Mr Lazy, Mr Muddle, Mr Dizzy, Mr Grumpy, Mr Clumsy, Mr Worry, Mr Slow and Mr Grumble all rolled in to one.

Along with a few others that you may not have heard of  before such as Little Miss Ouch, Little Miss Confused, Little Miss Sleepy and Little Miss Lonely.

In a morning when it was time to get up Little Miss Brainfog found it very difficult to get out of bed because of feeling unwell and tired.  People thought she was like Mr Lazy, but she really wanted to be up and doing things like Little Miss Busy and Mr Rush.

Once out of bed Little Miss Brainfog used a lot of energy getting her breakfast and getting ready, it was hard work and she felt very like Mr Slow.

Little Miss Brainfog has difficulty doing things for herself and often needs help, this makes her feel like Little Miss Useless.

After getting ready Little Miss Brainfog tries to do things, but because of feeling ill and not being able to concentrate or think properly she feels like Mr Muddle, Mr Clumsy, Mr Dizzy, Little Miss Dotty, Mr Forgetful, Little Miss Scatterbrain and Little Miss Whoops all in one.  This is what brainfog feels like and why she is called Little Miss Brainfog.

Little Miss Brainfog finds it difficult to get out and meet people and join in activities, people think she is like Mr Rude and Mr Uppity, but it's actually because of the brainfog and feeling so ill and in pain.  All the other people in Normal Town seem to have fun and know lots of people and do lots of things.  Little Miss Brainfog feels left out and lonely as well as being ill.

When Little Miss Brainfog does go out she feels like Mr Silly as she needs to use a wheelchair and people don't think normal looking people should use wheelchairs.  As well as not being able to walk Little Miss Brainfog finds the light, noise and business of Normal Town very overwhelming and just wants to go home or find a place called peace and quiet land- which doesn't seem to exist.

Little Miss Brainfog has to rest during the day, but she really wants to be like Little Miss Helpful, Little Miss Busy, Little Miss Quick, Little Miss Tidy, Little Miss Fun and Little Miss Somersault.

Little Miss Brainfog tries her hardest all the time and wants to be like Mr Strong and Mr Perfect, but the harder she tries the worse the extraordinary illness becomes and she feels like another unknown Mr Pathetic.

Have you ever tried to run a marathon through treacle whilst in pain, with lots of noise and flashing lights around you, whilst carrying the weekly shopping?  You haven't?  This is what doing a very ordinary task feels like to Little Miss Brainfog, for example walking upstairs and then when you get to the end you become Little Miss Scatterbrain and forget why you are there and have to do the whole marathon again.

Have you ever been so tired that all you want to do is go to bed for a good sleep?  Little Miss Brainfog feels like this all the time, but when she tries to sleep she can't, how very peculiar!

Have you ever spun around until you feel so dizzy you fall over?  This is what Little Miss Brainfog feels like standing still.  How bizzare!

Little Miss Brainfog might look normal, or appear to be like Mr Lazy, Little Miss Scatterbrain, Little Miss Whoops or Mr Rude. Actually she is some very special people inside like Mr Strong, Mr Impossible, Mr Clever, Mr Brave, Mr Good, Little Miss Splendid, Little Miss Star, Little Miss Wise, Little Miss Brainy and Little Miss Stubborn.

She would love to be Little Miss Sunshine, Little Miss Giggles, Little Miss Helpful, Little Miss Busy, Little Miss Busy, Little Miss Fun, Mr Happy, Mr Bounce, Mr Clever and Mr Busy.

So remember the next time you see a person they might not be who you think they are, appearances are deceptive.

Monday, January 18, 2016

If you're Happy and you know it.......

but what if you aren't happy, or don't seem to know what happiness is?

We seem to have got in a rut of misery and even doing nice things doesn't make us feel good and everything seems hard work and not worth the effort.  We just seem so bogged down and can't see the wood for the trees in anything we do.

Now I have depression and ME so am used to being like that, but the rest of the family seems to feel the same and I don't know how to help.

Apparently, today is Blue Monday and Leeds is one of the most depressing places to be, according to Yorkshire Evening Post story.  Trust me to be in the most depressing place on the worst day of the year, but I don't think my location makes much difference as I am not out and about and mixing with other people.  It's not post Christmas blues either as we didn't enjoy the festive season or do anything exciting and were glad when things got back to normal.  Emily was really unsettled by the holidays and just wanted to be back at school, which is a bit soul destroying when it took me so much effort to get ready for Christmas and make it happen.

So what is happiness?  How do you be Happy?  According to Google, who of course knows everything!  Happy is "feeling or showing pleasure or contentment." and other words for happy are 
contented, content, cheerful, cheery, merry, joyful, jovial, jolly, joking, jocular, gleeful, carefree, untroubled, delighted, smiling, beaming, grinning, glowing, satisfied, gratified, buoyant, radiant, sunny, blithe, joyous, beatific, blessed.  How often do we use those words?

I think there is a lot of pressure to be happy, with sadness or displeasure being viewed as wrong, and we are always being told if you have somewhere to live, food and family you should be happy.  We accept that we are lucky to have those things and are grateful to have those things, but also work hard for them and been made to feel ungrateful when those things don't make us Mr Happy of course then makes us feel bad and it all becomes a bit of a vicious circle.

Being ill gets me down a lot and the limitations that are put on my life, but if I complain, I get responses along the lines of how can you unhappy with what you have got?  You are lucky to not have to work, you are lucky to be at home all day.  Those things don't make me happy though as they are not the things I want to be doing.  I know I am lucky to have a nice house, but it is stressful keeping it like that and having to ask for help with anything that needs doing and any jobs we try to do taking months and months, if not longer many never get finished, and always trying to live up to others expectations.  Yes I am lucky to have a relatively new car, but it's not actually mine and I could lose it any time that DWP decide I don't deserve it any more.  Even the car takes effort to keep it clean and running well, tomorrow it's off to be repaired after part of the roof fell on it during the high winds, so more hassle and more money to pay out.  I hate every time I get in the car as it is filthy inside and so needs cleaning out, I am hoping it might get valeted when it goes for repair!!  I have to remember tonight to take out anything that we need from it as we don't know how long we will be without it.  We will get a courtesy car, but have no idea what it will be.

Yes I am lucky to have my daughter and husband, but it doesn't mean they make things easy and at the moment tensions are running very high and we are having a lot of problems with Emily's behaviour and having trouble getting any support or getting anyone to believe us as she is an angel to everyone else.  

This graphic that someone sent me about sums it up

I know the graphic relates to children on the Autistic spectrum, but I think all children and adults can be like that sometimes, we spend all our time putting on a brave face and being nice to people, get over loaded with stimulation and when we get to the end of the day in our own homes it hits us and we get bad tempered or tearful or withdrawn, however our bodies decide to cope with it.  Or am I just making excuses to justify poor behaviours?

I am showing my age now, but as I have been writing this song popped into my head, originally sung by Ken Dodd in 1964!

Happiness, happiness, the greatest gift that I possess
I thank the Lord I've been blessed
With more than my share of happiness

To me this world is a wonderful place
And I'm the luckiest human in the whole human race
I've got no silver and I've got no gold
But I've got happiness in my soul

Happiness to me is an ocean tide
Or a sunset fading on a mountain side
A big old heaven full of stars up above
When I'm in the arms of the one I love

Happiness, happiness, the greatest gift that I possess
I thank the Lord that I've been blessed
With more than my share of happiness

Happiness is a field of grain
Turning its face to the falling rain
I can see it in the sunshine, I breathe it in the air
Happiness happiness everywhere

A wise old man told me one time
Happiness is a frame of mind
When you go to measuring my success
Don't count my money count my happiness

Happiness, happiness, the greatest gift that I possess
I thank the Lord I've been blessed
With more than my share of happiness

Happiness, happiness, the greatest gift that I possess
I thank the Lord I've been blessed
With more than my share of happiness

Makes it sound so simple to be happy and it is quite a catchy song that makes you smile I guess.

Another in similar vain;

Bring me sunshine
in your smile,
Bring me laughter
all the while,
In this world where we live
there should be more happiness,
So much joy you can give
to each brand new bright tomorrow,
Make me happy through the years
never bring me any tears,
Let your arms be as warm
as the sun from up above,
Bring me fun, bring me sunshine, bring me love!

Made famous by Morecambe and Wise (lyrics Metro).

 Perhaps if I sing these each day it will make me happier?!!

It's strange how songs appeal to me, it usually the tune that I notice as I can't hear the words, but then if I look up the words to something I like the sound of they are quite meaningful.

One that sticks in my head a lot is Reflection from the Disney film Mulan, I have never seen the film, but the song is very powerful and my daughter is learning to sing it. The lyrics tie in with my previous blog Who am I.

Look at me
I will never pass for a perfect bride
Or a perfect daughter
Can it be
I'm not meant to play this part?
Now I see
That if I were truly to be myself
I would break my fam'ly's heart

Who is that girl I see
Staring straight
Back at me?
Why is my reflection someone
I don't know?
Somehow I cannot hide
Who I am
Though I've tried
When will my reflection show
Who I am inside?
When will my reflection show
Who I am inside?

(lyrics Metro)

We can learn a lot about happiness from children, watch what makes them happy, seeing it snow, blowing bubbles, splashing in puddles.  As adults we miss all that and think we are too grown up for it, but if we try it, it does make us smile and laugh, even if we do get cold and wet!

I keep trying to be mindful and live in the here and now and savour the little things, but they easily get missed amongst the daily routine and trials and tribulations.

Today I managed to do a small craft project that have been meaning to do for ages and I am pleased with it and it made me happy, but I am overwhelmed by the huge number of things waiting to be done and that takes away much of the pleasure of actually having done something.

I will end with a few pictorial quotes

Definitely food for thought.

Here is a happy picture of my daughter take the other day, she was happy because she had just drawn a picture of the cat, it's in the little things.

Wednesday, January 13, 2016

Who am I?

It's been a while since I posted, Christmas was quite overwhelming in a number of ways and very difficult.  New Year was quieter, but depressing!  I don't really like Christmas and New Year as for me it marks another year with no progress and another year older having got nowhere, so I get rather down, this year it was even worse, but I tried to keep as bright as possible for Emily.  I am struggling now I am back to being on my own all day and all the payback is hitting me now.  It's also that time of year where you see people or hear from them and they say "did you have a good Christmas?"  And of course you have to say "yes thank you."  I will bounce back a bit, I have Emily's birthday party to organise now, only 3 weeks on Friday, can't believe she will be 9!

We live in Leeds which was badly affected by floods over Christmas, we were away from home, but watched it unfolding on TV and online.  Where we live wasn't affected by flooding as we are on a hill, but some of the low lying areas near by were affected.  Kirkstall Road was the main area shown on TV, I used to live off Kirkstall Road as a student, it was quite a run down area then, but has changed a lot and there is a big entertainment complex there which was affected.  We rarely go to that area of Leeds, but had been a few days before to the cinema as the cinemas we normally go to weren't showing the film we wanted.  Actually it was very disappointing, we went to she Charlie Brown and it was so slow and hard work.  Emily spent half the time asking to leave.  We took a friend with us and if she hadn't been there and watching the film we probably would have left, will have to choose something more exciting next time.  Our electric went off sometime over Christmas which we think could have been due to power surges from the flooding.  Most things came back on, but some sections of the house tripped so the freezer didn't come back on and we lost everything in it.  There wasn't anything expensive or special, but it was still costly to have to throw it all out and replace it.  It was a relief that we didn't need to go out and buy a new freezer though.

Living with a chronic illness is hard work in itself and robs you of many things including who you are or want to be.  I feel I am trying to play several roles; Mum, wife, daughter, daughter in law etc and they can't be done together as they are all different.  If you go to a play sometimes actors play more than one part, but that's only if they are small parts, they change appearance and hey presto they are someone else, but the lead characters couldn't be more than one person as they can't be two people at once.  They can do it on TV eg Mr Tumble as they film separately and then splice together, but we can't do that in everyday life.  All these roles are on top of full time sick person.

I use what little energy and time I have I use all my energy doing things for other people and then have to spend big chunks of time in bed when I am on my own.  Emily said the other day she doesn't like it when I rest at weekends and asked that I have a shorter rest so that we can do things.  It's not an unreasonable request given that we seem to do chores and then I go to rest and don't come back until nearly tea time.  I often sacrifice rest if we are away from home as I have no choice.  In her eyes she thinks I make more of an effort for other people and put them first which I do, but not consciously and she doesn't see the payback I suffer for it.  She is also not able to see that many of the things that take up my energy are for her, getting her to school and activities, sorting out parties and arranging to see people etc.  I often don't join in the things I have organised, I do the background work from my phone and computer at home, but have to miss out on events. or at best be pushed around in my wheelchair and then have to rest when at home.  This makes me feel very bad at my role as a Mum.

I rarely spend any time with my husband. On the rare occasions that Emily is out and we are together we spend time trying to get things sorted out or I use the time to rest.  We had a couple of hours together on New Years Eve and I spent the whole time in tears as I was so exhausted and fed up.  We rarely make nice plans as we have got so used to anything special being spoiled we have changed a lot of plans and missed out on many things and I think we have now got into the thinking there is no point as it will get spoiled.

My identity is so vague and mixed and I don't have one role that I can do well and be proud of.  I don't have a job with a job title and something that I do and get satisfaction from or get rewarded for ie. getting paid.  My husband is about to start a new job, he gets a new job title and a promotion so he and others can also see that he is making progress and being successful.  I can't even say I am a housewife or stay at home Mum as I don't do my own housework and my daughter is now at school 6 hours a day.

I want to get back to my craft stuff and have something to take pleasure from, but it still doesn't feel right just something to fill time and I don't have the energy to become better at it or learn new skills or do anything for very long.  Most of the time I don't get to do much as my energy and time are taken up with a very boring daily routine.

I will be 45 this year and I don't want another miserable year, just getting older and making no progress, but what can I do?  I want to have some fun, do something for me, be able to enjoy life, be helpful, be useful, be me, but I really don't know how to do that and I feel that I will just plod along getting older and not getting much out of life.  I want to be a good Mum, wife, daughter etc without struggling and always wishing I could do more or be better or pushing myself too hard and making my ME worse.

Oh dear, as I said New Year is a bad time of year, hopefully my next post won't be so depressing.

I will leave with a picture of my beautiful cat who was very ill over Christmas and we really thought we were going to lose him.  He is 16 1/2 and we can't face the thought of life without him.  This picture was taken last night when he was laid on the bed with me and I didn't have the heart to move him so I could get comfy to sleep!  He did move eventually and then woke me about 6am making a right fuss because he had used his litter tray, he thinks we need to know!!  It's just good to know he is back to himself again.