Keeping up appearances

 I was talking a to a friend today who is having Chemotherapy as part of a treatment for her MS. Knowing that she was going to lose her hair, a few weeks ago she had her hair cut short and donated her hair to the charity that makes wigs for children with cancer, a lovely thing to do. After getting used to her new short style, which really suits her, she is now at the stage that her hair is falling out and the next step is to shave the rest off. It got me thinking that the main thing people worry about when having Chemo is the hair loss and they feel self conscious and worried about how they look. Most people having Chemo shop for wigs and or hats before treatment. This of course does give them a bit of control over what is otherwise a very difficult treatment and something that is often done alongside having to get used to the shock of diagnosis too. As I said this friends donated her hair to be made into wigs for children, but maybe there could be a way of having people’s own hair made into a wig and make them feel more themselves.

Amy Dowden from Strictly come dancing is currently undergoing treatment for cancer and has shared videos of her shaving her hair off. On Saturday night she appeared on live TV without her wig, she looked amazing and I am sure she probably felt awful.

So why is our hair so important and why do we feel so ashamed of losing it? If you are having chemo it is often the only indication of the damage that Chemo does to the whole body, but it also shows what you are going through and people should be proud of what they are doing. Ironically the professional dancers on Strictly this week did a number where they were all wearing wigs as they danced to a Barbie theme. They all looked so different I couldn’t tell who most of them were. Changing hairstyle and colour is often something we do to make ourselves feel better or happier about ourselves and the amount of money spent on hair products is crazy.

Hair also often says something about our character or allows us to fit into a specific culture, eg skin heads, punks, goths etc, it becomes part of our style. Growing up in the 1970’s saw some wild hair styles and colours.

People do make assumptions about people related to hair styles and colours, eg skinheads are thugs, blonde’s are stupid, goths are weird. As a child I always had short hair and my hair was black, most people assumed I was a boy. I did grow my hair a couple of times, but much prefer it short. As my hair started to go grey I spent time and money on covering it up. I always found having my hair coloured so draining, but felt I had to do it regardless of this. Thankfully I have now accepted the grey, I might not like it as much, but it means I have more energy and money for more important things. Appearances are important and we all want to look our best, but we should not be ashamed of something that is natural and or out of our control.

It’s not just a female thing either, male hair products has become big business too. Many men are ashamed of going bald and or grey, especially if they are still relatively young. In the area where I live we have so many barbers shops and there always seems to be another one opening.

Why do we get so ashamed of how we look? As a wheelchair user and hearing aid wearer I am really bad for it. When I first had hearing aids I grew my hair over my ears to cover them, when actually it’s much more practical to have it cut around my ears. What is there to be ashamed of, I can’t hear without them and a lot of people don’t even notice that I am wearing them. People used to be very ashamed of needing glasses, now they are almost a fashion accessory. I only wear glasses for reading and it’s such a pain having to take them on and off all the time and I can never remember where I put them, but glasses now seem much more acceptable than other corrective aids. I hate people knowing I wear hearing aids and even with them my hearing is not great and I spend much of my time either avoiding contact with people or coming across a stupid rather than explaining that I cannot hear. I wonder if people with guide dogs feel ashamed, I do hope not.

None of us are very good at accepting things that make us stand out as being different. I use a wheelchair outside of the house and I hate the way people treat me because of it, I am not a lesser person and without it I wouldn’t be able to leave the house. I hate that I am reliant on someone to push me and feel sorry for my daughter and husband and often avoid going to things if it will make it awkward for them. I think perhaps some of the shame comes from feeling that I am not justified in using it, I am not paralysed, I just can’t walk far. I do feel like a fraud when I get out of my chair to do something or use a blue badge parking bay, even though I have a blue badge.

As someone who has an illness that imposes a lot of limitations on me, I still feel so ashamed that I don’t work and I don’t do much cooking or cleaning. I hate asking for help and am ashamed that people have to do the daily chores for me. It makes me feel a lesser person and an unworthy person. I can’t accept that it is not my fault, I always feel it is my fault and I should try harder and do more so then this piles upon my physical limitations and adds to the exhaustion and means I can do even less. I always think that people think I am lazy and spoilt because I don’t work. I also feel that if I had another sort of illness it would be more justified, but with ME, you feel so ill, but nothing much shows up medically so you feel such a fraud. I often wonder how I can feel so unwell and have so little energy when apparently there is nothing wrong with me.

I am currently feeling so useless as I am supposed to be making stuff for a hedgehog recue charity to sell, but I never manage much and other people are so productive, it puts me to shame. The lady who runs the rescue is badly sight impaired and has multiple health issues, she is also foster Mum to disabled children and she work relentlessly. I do want to be able to help so much more and am ashamed of how little I get done.

We all put so much pressure on ourselves to keep up appearances and to appear normal. What is normal anyway?

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.

Merry Christmas everyone

Well only a few days to go before the big day, we seem to have been in the run up for months.  I am not sure how I am keeping going as there seems to be one problem after another on top of Christmas preparations and school holidays and normal routine.  I am not sleeping despite being exhausted as my body is flooded with adrenaline and cannot relax.

So many people seem to be struggling and finding it difficult to get into the Christmas spirit, whilst the kids are hyper and singing Christmas songs dawn till dusk!

The weather is weird, not very festive at all, but some newspapers are still saying we will have a white Christmas!

It is difficult to know what to do at this time of year it is so exhausting and the demands are huge and there is so much conflict about what to do, what you can manage, what you should miss out on and then there are always unexpected things that crop up, in my case; toothache, a very sick cat, things falling down or falling apart, Emily wanting to do cooking, crafting etc.

I never know what I should try to do and what is not worth the effort and probably spend far too much energy on this debate.  I don't want to miss out on seeing people and seeing Emily enjoy Christmas, but I know I will feel awful.  The alternative is to be stuck on my own still feeling awful and wondering what I am missing.  To be honest most people won't really notice if you are there or not as long as you don't miss a major event like Christmas dinner.  I usually end up doing a mixture of being there and not being there and still always do too much.  Other people carry on with whatever they are doing with or without you.

The lists symptoms starts to feel a bit like 12 days of Christmas;

On the first day of Christmas my ME gave to me Chronic Exhaustion,

On the second day of Christmas my ME gave to me, aches and pains and chronic exhaustion

On the third day of Christmas my ME gave to me brainfog, aches and pains and chronic exhaustion

On the fourth day of Christmas my ME gave to me dizziness, brainfog, aches and pains and chronic exhaustion

and so on until you get to the 12th day where you feel like you got trampled by 12 reindeer and never want to see Christmas ever again!

Also at this time of year I start thinking about what I want to achieve next year and how it will be better than this year, more pressure, more things to do and in the end I am disappointed as I never fulfil what I wanted to, I miss out on things, I push myself way beyond my limits, I send all the time feeling awful and another year passes and not much changes except we are all another year older, I'd like to say wiser, but don't think that is the case.

Well I had better finish now and wish everyone a Merry Christmas whatever you choose to do and hope that 2016 is a better year for everyone and remember

Hang in there!

Pride and Prejudice Pt2

Well it's been a stressful weekend with awful events happening affecting people close to me and although I am not directly involved or affected it has been very distressing and makes me feel so helpless and annoyed with myself for complaining about my own issues which seem quite trivial in comparison.  It also makes me push myself to do more as I feel I have nothing to complain about.  I know I am not well and need to rest, but when I try I can't settle it's a bit of a nightmare really, but I just have to do what I can.

I feel guilty as I want to do something for myself, but because of all the things happening and priorities changing I am not able to.  It was quilting at the weekend and I really wanted to go, but there were no places, and as it happened I probably wouldn't have been up to it so I ended up stuck at home again.  Tomorrow night I was booked to do a bath bomb making class with Emily, I knew it would be difficult, but really wanted to do it, but just today it got cancelled.  It was a relief and a frustration as I know I won't get another chance at it.  Then I beat myself up for being selfish when other people are suffering much more.

We are still trying to get Emily's new room finished off, it is a struggle for me as it is up two flights of stairs I can only go up if I rest after one flight and have to limit how many times I do go up there.  It is all taking shape and we should be happy with what we have done and be proud of it, but I feel more embarrassed and don't want people to think we are showing off or spoiling Emily.  Most of the work has been done by other people so is not ours to be proud of except that we enabled it and paid for it of course (more embarrassment).  Now it's down to us to get things in place and the rest of the house back to normal.  I am ashamed that I can't get more done and that it is taking so long instead of being proud of the bits I do manage to get done or persuade Rob to get done, embarrassing nagging wife!

As many of you know I dabble in crafty projects, but never think my things are good enough or have any pride in what I make and it takes away the pleasure in what I do.  I also feel guilty for doing something I enjoy when there are important things to be done or other peoples needs to be met.  I don't want people to think I sit around having fun all day.  A lot of the time I struggle to do anything because of pain, dizziness and cognitive problems.  I started my blog to have a record of what I make, so I can see what I do achieve and also to make notes about where I got things from and how I made them and to share ideas, not to show off.  My makes are usually quite simple as I like simple things and they are easier for me to concentrate on anything complicated or fiddly fries my brain!  But then I see other people's makes or magazines and I think my stuff is so basic and too simple for anyone to like it, then I get put off and make less.

I feel like I have to swallow my pride so much as I have help in the house and need a lot of help from Rob for every day life to tick over.  It should be me who does those things, that is what Mum's do, don't they?

They say pride comes before a fall according to English club.com

 "Possible interpretation: If we are too proud about ourselves or something, we will probably meet with failure or disaster. When we are too self-important or conceited, something is sure to happen to make us look foolish.
Note: pride (noun) = an excessively high opinion of oneself or one's importance | A variation of this proverb is: "Pride goes before a fall."

Origin: This proverb is a contraction (some would say misquotation) from the Bible (Proverbs 16:18): "Pride goeth before destruction and an haughty spirit before a fall.""

What about those of us who are not self important or conceited, but yet still end up looking very foolish?  Then our pride (dignity) and self esteem is dented even more.  

“Generosity is giving more than you can, and pride is taking less than you need.”   ( Kahlil Gibran, Sand and Foam)  This word pride is very confusing.

You should take pride in your appearance and you're house etc, but too much is showing off, not enough and you are thought not to care.  Is there a right and wrong, how do we find the balance?  This seems to be a question that I come across in so many situations.  How do I do my best to create the right appearance and do the right thing without showing off, or appearing not to care or worrying or doing too much, too little etc, etc. whilst keeping within my limited energy.  I never wear make up and can't do my hair for myself, I wear comfy warm clothes and shoes from necessity not because I don't care.  I often hate the way I look or the state my house is in and other such things, but we can't always keep up appearances.  For those who are old enough to remember the programme I feel more like Daisy than Rose or Hyacinth!!

ME is real and it's bad

I have seen a few things this week trying to get across the impact of ME and how it affects us

Firstly an article from Health Rising, "The authors looked at median and mean quality of life scores. The median scores are a more accurate measurement of a community because they’re not skewed by people with really high or low scores. How did the quality of the lives of people with ME/CFS stack up next to those of people with cancer, multiple sclerosis, heart attack or stroke? They were worse – significantly worse."  There is another take on it here  stating "In a list of 21 medical conditions, including: breast cancer, colon cancer, heart disease, renal failure, stroke brain, lung cancer, rheumatoid arthritis, sclerosis, depression, angina, among 10 others…ME/CFS is listed first in severity of disability.   FIRST."

Along similar lines this image 

and this 

I have also read a couple of blog posts by Sian Wooton who describes what it is like to have the condition and the realities of trying to do things that you want to do Let me put it this way and Holiday Reality.  Well said Sian.  And another post from Anna Jones about fatigue.

I am sure that people will say that I am not that bad, believe what you like, I know how it feels and it hurts not to be believed and makes me push myself all the more which makes things worse.

I think some of these images sum up my feelings, especially the last one!!

ME and guilt

Been feeling really guilty and anxious this weekend.  There is a  lot going on and I am dependent on Rob to get things done, which makes me feel bad as he has a full time job and deserves a break at weekends, but weekends get so manic trying to fit things in and keep up with chores and activities.

On Saturday I ordered some new craft stuff, but then felt really guilty as it's not my money and I don't have a lot of time to do things so often things go unused, it feels wasteful and unfair on Rob and Emily, so why do I do it.  As I do my ordering online I often fill my shopping basket and then never check it out, I did this several times with these items, it was only when an offer came through from one of the companies that I finally ordered.  It's lovely getting new stuff and trying out new ideas, but it's always tempered by the guilt, I feel sick writing about it.  I then feel under pressure to use the stuff and think of ideas, but in reality there is little time and energy and other things take priority.  This morning I am trying to get going on a card that someone has ordered from me, but still feel guilty and that I should be getting other things done.  I have done two loads of washing and got Emily ready and to school, so why do I feel bad?  My kitchen is a mess, but B comes in to sort that out later, the dining room is full of half painted furniture,  I should sort that out, but its difficult to do and Rob wants to do it, but I know he doesn't really have the time and it's likely to stay there all week.  I get like this when I have people working in the house I feel like I should be running about doing things and looking busy!

I have extra things on this week, so do need to conserve my energy.  I am also getting in a panic as Rob is out tomorrow night so I need to be able to cook something for Emily and me, I also have to get things ready tonight as rob takes Emily to gymnastics.  I don't know why I am worrying as it will just be simple stuff to put in the oven, but then I feel bad as Emily has so many meals of chicken nuggets, chips and peas, especially on the night she doesn't eat at same time as us.  It what she asks for and I don't have the energy to do something better for her.  I can't eat the same as her because of my intolerances, so end up doing different things and get in a muddle, its so annoying and I waste a lot of energy worrying before I have even started to do anything.  it's not very in keeping with the mindfulness which has really gone out the window this weekend. It just makes me feel so useless and a burden.

Emily does a lot of outside school activities and I can't really get her to them so poor Rob has to get in from work, cook and then take Emily where ever she is going, leaving me alone a lot of the time, I feel like I never see them and when they are around there are basic things that need doing which we all find boring and frustrating and everyone is tired and irritable.

I have been trying not to let the building work get to me, as it will be great when it's done and it's something we have wanted to do for many years, but never had the money or time to get it done.  After so many times of putting it off we got a quote which was more reasonable and seeing their work we were very impressed so decided to bite the bullet and go for it.  The actual work is not really a problem, a bit noisy, but it the impacts on other things like painting furniture in the dining room, having to go and choose carpets, needing to find a decorator and it all gets overwhelming and I am stuck in the house with constant reminders of what needs to be done and feeling guilty because I can't do things and not wanting to ask Rob as he has enough to do already.

Emily hates change, so although she is excited about getting a new bedroom, she is also very unsettled and got upset with the scaffolding outside her bedroom and wants to help with things, that she can't really do, it's so frustrating.

Yesterday I met up with a lady who is doing skin care and make up to raise money for the Nepal earthquake appeal.  She was doing a skin cleanse and make up for just £4, her aim is to do 30 in 30 days.  It was nice to have it done, my beauty routine and make up gets very neglected.  I hardly ever wear make up and usually forget my skincare!  The lady is also trying to promote Tropic Skincare.  They are nice products, but more expensive than I would normally buy as I don't feel it's worth it when I rarely use them and don't go out much.  Thankfully she was not pushy and was basically trying to raise money, having just done fundraising myself I was keen to help and it's great when you get something for your donation too.  Sadly again this made me feel guilty though, it was Father's Day and there I was having something done for me and poor Rob sitting outside in car waiting for me, it's also his money, not that he minds a good cause.  Emily came in with me and of course chattered away.  Later on she said the make up is nice, but it's a waste of time and money to do it everyday.  So true Emily.  If anyone local is interested in supporting this lady with her good cause see details here.

After the makeup we went to Rivers Meet  to show our support at the Summer Fair.  There were many people there that know me and they all said wow you look great, you don't look like you, your hair looks great!  It's a bit of a shock really, I am not used to compliments and its hard to know how to take it.  Does that mean I usually look bad?  Should I try harder to look nice when I go out?  One person said to me  that I looked really well, but she she knows me realised that I probably didn't feel that good.  Then it's kind of I have to accept these compliments and say nice things in return, but I am useless at talking to people and it was noisy, so I felt I was being rude.  We also didn't buy anything, it feels wrong to go and look at the things people have made and say how nice they are, but not buy anything, I know they have put a lot of time and effort into their products and want to make a bit of money from it, but I can't buy things I already have or don't need.  I hope that lots of other people did buy.

More guilt was piled on when we got back home, as it was time for me to rest, but Emily didn't want me ton and then she got upset saying she had no one to play with, meaning other children, even though she was going out again an hour later to a Messy Church.  I felt bad because I couldn't go with her and because Rob had to take her and then come back and get tea ready whilst I rested.

It's all so frustrating and I always feel guilty and useless and push myself to try and do things so that others don't have to, which usually makes things worse not better.

Now I have to get something to eat and go to rest which all feels wrong whilst Rob is working, Emily is at school, the workmen are working and B comes in to sort the house out.  Most people would think an afternoon rest great, but not me I hate it and it feels so wrong that other people do so much for me, but I still complain that I have too much to do, or that I am missing out on things or can't do nice things.  Am I being selfish and unreasonable, am I am being unfair to others, should I try harder?  is it wrong to do things for pleasure or relaxation?

ME vs Cancer

Here is a great article about a fellow sufferer Jenny Andrews, who has had both ME and cancer and her experiences of the difference in attitude and treatment between the two and her descriptions of having ME.

http://www.dailymail.co.uk/health/article-2861107/I-d-CANCER-chronic-fatigue-syndrome-Woman-s-battled-condition-10-years-says-people-unfairly-labelled-attention-seekers.html

There are some great quotes

"Jose Montoya, a professor of medicine at Stanford University and a leading expert in CFS, has described the condition as 'one of the greatest scientific and medical challenges of our time'. 
He said: 'Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.'"

"Chronic fatigue is like having horrendous nausea and then being thrown on a ship - and feeling sea sick - with bags of potatoes tied to each limb - and then someone asking you to run a marathon. And that is just to get to the toilet."

"'I've been told I'm not ill, to have a glass of wine and that I'm actually depressed. There comes a point where you start to doubt yourself and think "am I"?

She continued: 'However with depression, you have no motivation, feel like there is no point to anything and have no fun any more. 

'I do have the motivation, drive and ambition to get up and do things - just not the physical strength.

'Some people think I'm making it up and being lazy - it's horrendous."

"'I've been told that in order to have the best chance of recovery, you need to start getting treatment within the first six months.

'But many doctors say you have to have had symptoms for six months before you are diagnosed with CFS."

"Tony Britton, of the ME Association, told MailOnline: 'We are not surprised by Jenny saying having chronic fatigue syndrome feels worse than those awful days when she had bladder cancer.

'When people have cancer they can generally access speedy and effective treatment, research is rapidly moving forward to reduce the death toll, come up with individualised treatments, and providing a good quality of life as long as possible. 'The whole medical and nursing establishment can get behind you.' He added that by contrast, CFS – which is also known as M.E. (myalgic encephalomyelitis) – is poorly understood."

Please do read the rest of the article.  Well done Jenny for getting this article published.

My husband had cancer in 2006/7 and despite having a strict drug regime and risking hospitalisation if he unable to keep his medication down he says he is glad he had the cancer over ME.  He is now able to lead a normal life and care for me and my daughter, people with ME can't do that.

All Princessed out

Last few days, May Offer, any orders for cards or bracelets, money will be donated to ME fundraising. Items won't be made until June though, due to school holidays, check out http://www.craftyjanes.co.uk/gallery.shtml and https://www.pinterest.com/emilysmummy/made-by-me/ for ideas.

My current total for the fundraising is £459.01 plus gift aid of £92.98, which is £551.99!  The Princess team total is over £5,000 :-)

I did another awareness event at Rothwell Baptist Church  Family Friday, we did the crown making again and Rob did a talk. It was good, but was rather ME from Rob's point of view, we were supposed to do it together, but I got past being able to argue with him and just let him get on with it.  It gave the information even if it wasn't quite how I would have done it. It seemed to be well received. I always find it difficult to judge and always think it does not do justice to the reality, but how can you do that really?  When we did the one at school the children asked some interesting questions.  I think as much as anything though it shows that you never know what a person is feeling or suffering, whether it be illness, bereavement, trauma etc and could make for some interesting discussions.   If anyone is interested in sharing experiences and writing a piece I would love to hear from you by email or comment on this post.

As part of the fundraising we also had an auction on the team facebook page I sold some bracelets and cards, I hope their new owners like them.

At the school event and the Friday club event we had a competition for best crown for boy and girl, here is Emily modelling the ones made by her class mates

Between the two events we also went to see Disney on Ice at Leeds Arena.  It was a great show, but rather exhausting for me, it was well worth it to see Emily's face

I am going to post this now as it has taken me nearly a week to type it!  I hope to post the full set of photos and captions when I have the time and energy, doing these events and having school holiday has been totally exhausting, being a Princess is not an easy life!

Story behind the photos!

Every picture tells a story or so they say, or the camera never lies, but in this case the pictures were not telling the truth.  They show happy faces, they show peace, they show fun.  They don't show the pain, the difficulty getting ready and getting there, the payback for doing it, the effects of the bright lights, the effects of having to concentrate on what people were telling me to do and still getting it wrong.  They don't show the weeks of preparation and anxiety about getting it right and being ready. They don't show ME at all do they?

We tried to tell a story by taking the sleeping pictures

But without the captions they don't tell you much.  They don't tell you how painful it was to be in that position, they don't tell you I had 2 hours sleep the night before, they don't tell you the tiara was hurting my head and making me dizzy, they don't tell you how difficult it was to put my make up on and how ill I felt the day before having my hair cut and coloured, they don't tell you all the thoughts rushing about in my head and how all I want to do is go home and lie down for real.

Add captions and they do speak a bit louder

But they are still far from the truth.

Then we have the ones where it looks like I am holding Emily

Actually she is standing on a chair

Then the ones of me on my own, smiling and laughing

Again they don't show the effort of just standing there and the brightness and trying to follow instructions, the difficulty moving about in the dress.  They do demonstrate putting on a brave face

They do maybe demonstrate some of the isolation and the feeling of being alone with the illness, as what you don't see is the other four people who were in the room, or that they were doing all sorts of things to make me laugh and smile.

The ones with Emily, don't show the pain I feel at missing out on so much of her growing up and and the guilt at not being able to be a proper Mum to her, the difficulties I have trying to explain my illness to her and the battle I have to do the best I can, which never feels enough.

They don't show me going straight to bed when we got home, hardly able to move.  They don't show later in the day when she wanted me to carry on playing Princesses and I got angry at her fussing and excitement.  They don't show me crying as I can't do what she wants or because I can't stand the noise or because she won't listen to me.  They don't show the confusion on her face when she can't understand why I can't play with her or meet her demands.  They don't show all the help I have to keep the house in order and to put food on the table so that I can be there for her.  They don't show the sadness I feel when she has to put me to bed or help me in the bath rather than the other way around.

They show a happy little girl there is no doubt about that, but they don't show the tantrums and defiance and confusion of her every day life.

They show a little girl who is well cared for as she has a Dad who works hard and makes sure she can have what she wants and take part in activities without my support.  They don't show the hours I spend on my own waiting for her to come home, only to find it too overwhelming and the joy crushed.  

They show a little girl who is loved, but it is so difficult to show that to her and to show that I really mean it.

The sad pictures maybe show better reality, but still dressed up and wearing make up is not the real me.

Wearing comfy clothes and shoes that take minimal effort to put on and wear is much more me, hence the slippers

This doesn't tell that my husband also has health issues and had cancer at 29 and needs a complicated drug regime for the rest of his life.  Or that he has to work full time to cover the expenses of my being ill, cost of physio, wheelchairs, special food and that he has to come home from work and cook a meal and that he has to take me everywhere I need to go and does many things on my behalf.  That he has never been able to enjoy his recovery as he has always had me and Emily to care for.  We have to pay out for decorators and gardening because he just doesn't have the time for doing DIY.  It doesn't show the stress and the arguments that we have, I don't even recognise those smiles.  That we never spend any time together as I am too worn out once Emily has gone to bed and we hardly ever have time without Emily and if we do it's to difficult to do anything.

The happy family photo, again a rare sight to all be in the same room and looking happy, no sign of the strain of getting us all ready, the arguments and tears later on because I felt so ill and Emily and Rob were fed up.  The fact that we have to accept that this is our complete family despite the longing for another child that we can't have and the times that Emily is so upset because she has no one to play with or to share the burden of having a sick disabled Mum, someone who would understand how she felt, although I would not wish that upon another child at least they would have each other for comfort.

These pictures from the same day show a more realistic story, having to use a wheelchair to go out, spending hours resting in a dark room and the fact that some places see disability as a joke!  Out of 4 disabled spaces 2 were obstructed with concrete pillars so couldn't be used by a car, but they have provided the obligatory spaces.  I emailed them to complain, but as yet have not has a reply and don't really expect to.  Ah well I won't have to worry soon as my entitlement to a blue badge is coming to an end due to criteria changes, so then I won't be able to go out anyway!

I need to stop now as this long post also gives the wrong impression, it doesn't show, how many mistakes I have made, how long it has taken, the pain and dizziness and shaking to get it complete whilst I still know what I want to say.

So have I raised awareness into ME?  I don't know, I think I have given a very good demonstration of why people think people with ME are liars and not really ill at all.  I pushed myself made myself more ill and gave totally the wrong impression.  No wonder people don't understand, but if I showed the real story there would be nothing to see and we can't spend all our lives being miserable and feeling sorry for ourselves, sometimes you have to put on a brave face and make an effort and accept the consequences of it.