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?

What is the point?

I wrote this nearly a week ago, but feel so ashamed it has taken until now to pluck up the courage to share it and I still don't know if I am doing the right thing.

1am 14th November

Can't sleep again, so upset and overwhelmed with life and possessions.  I am so ashamed and upset at all the craft stuff I have most of which will never be used as I don't have the ability, time or energy to use it.  Today I wore myself out looking for something, there are so many places to check and so much stuff to go through, things are still not back to normal after building work so makes finding things all the harder.  So many unused things, so many UFO (unfinished objects), it's madness.  I dread to think of the cost of it and the cost of things to store it in too.

We are always saying we can't afford the things we would like and we would get pleasure out of, yet we have boxes and cupboards full of stuff that costs money.  Not just craft stuff; books, toys, kitchen stuff, tools and gadgets and clothes, and once bought it is all worthless.  My husband tell me they are sunk costs.

"In economics and business decision-making, a sunk cost is a cost that has already been incurred and cannot be recovered. Sunk costs are sometimes contrasted with prospective costs, which are future costs that may be incurred or changed if an action is taken." Wikipedia

How did we get it all?  It's scary and gives no pleasure at all, just stress and guilt.

What makes me think that any purchase will get used any more than the previous ones?

What right do I have to send money I don't earn?

When I spend so stupidly how can I say we can't afford things we need or help we need when I have hoarded so many things, it's so wrong.

Even if I started now I could never use up all the stuff and of course trends and interests change so much of it becomes obsolete unless you are very creative, which I am not.

My husband earns all the money for me to squander it on useless stuff including clothes and shoes etc which mostly go untouched as I rarely wear anything special as I am alone in the house most of the time only get out for the school run.

He also funds my disability needs as I have no income.  I had an assessment the other day for my social care funding and my income is a grand total of £21.80 per week.  I get no benefits because of inconsistent NI contributions and because my husband works.  The cost of illness and disability is quite high; wheelchair, scooter, prescriptions, glasses, hearing aids, walking stick.  I am a huge liability and give nothing in return.  

It's doubtful that even these purchases are worth it, my wheelchair is probably the exception, but it's in a poor state.  I am still reliant on others even if I use my wheelchair as it is attendant propelled and I couldn't manage on my own. I don't like using the wheelchair, but it means I do get out of the house. When you are in the wheelchair you do become invisible and people don't talk to you in person and they have little consideration and you are just at the level of everyone's, bums, elbows, bags and cigarettes too! I have a walking stick, but find it a pain to use. I have a mobility scooter, but rarely use it as I cannot get it in and out of the car so can only use it from home and the weather is rarely good enough to use it, can't be used in the rain and I feel cold very easily and it does require concentration to use it where as in a wheelchair someone else controls it. My daughter has been teased at school because of my wheelchair and walking stick. My daughter hates the wheelchair as it means she has to be independent when we are out and feels she is being ignored as my husband is pushing me, she is not quite big enough to push me herself which she doesn't mind doing and she is too big to sit on my knee which she could do when she was younger and made busy places easier to cope with.  I have been having a discussion this week about getting a stick with a seat for doing school, but It's only for doing school to go from car park to classroom the rest of the time I use my wheelchair so can't really justify another piece of equipment and daren't give anyone more reason to pick on Emily.   I find my normal stick a nuisance as it is so assume seat stick would be more so and in the busy playground I am likely to end up on the floor whilst trying to balance on the seat.  It has only become an issue now it is too cold and wet to sit on the floor!

Hearing aids do help, but also cause a lot of stress, I am currently without one as it needed to be repaired and the cost of purchase and maintenance costs is unbelievable, but it became too difficult to get NHS ones and to travel to appointments and to collect batteries etc.

Prescriptions are probably not that worth it either, but it's the only treatment on offer and at best they mask symptoms, but often are of no benefit and take a lot of time and effort to obtain.

Glasses are a new thing to me, so no idea if they will be much use, I am sure most of the time I will have no idea where they are.  I chose the cheapest pair in the shop, but was then charged more than the glasses to have an anti glare coating on them due to my intolerance to bright light!  organisations sure know how to make money out of peoples needs.

Once upon a time we used to eat out and have nice holidays, but not now.  Even though Rob earns more they seem unaffordable or an expense we can't justify.  We thought things may improve a bit as Rob has got a promotion, but guess what?  He won't get more money, just more work and more responsibility!  It's a job he really wants to do so is taking it, it can't be all about money all the time, but it seems very unfair.

I am so stupid and not setting a good example for Emily about how to manage money or about finishing projects and managing time.  Last night she was watching Grand Designs and said she would like the house.  I said we can't afford it, she asked how much it would be.  I told her it would be several Million and she said well just go to the bank and get it, she couldn't understand that we don't have several Million in the bank, but then those programmes don't help as people borrow much more than they can afford.

I never stick at anything. I forget so many things I have learned or lose the ability to do things.  I never have enough time or energy as it all goes on daily routine or searching for things.  I feel so stupid and useless and hate living this way.  It feels like my whole life has been a string of failures, inability to succeed, not finishing things or trying things I am not capable of.

I hate feeling this way, I am 44 and haven't achieved anything and never will.  There is no point in looking for other things to try, I have more than enough to keep me going, but just don't/can't do it.  I'll never achieve anything or move on or feel pride in things I do.  You only have one shot at life and I have really messed up and don't know how to change that.

I am unemployable, of little help to anyone and not very skilled at most things.  I know I am lucky to be able to afford some things and to have my house and family, but it's not the life I want for me or my family we are all pretty miserable most of the time.

I must look and sound like a spoilt brat, I don't deserve any of these things and I am not grateful for them as it makes me so unhappy and angry.  I am so disillusioned with everything I try as it is never good enough or I need some sort of help or just find it too hard and it all becomes pointless.

What is the point in making things no one needs or is interested in?

What is the point of writing a blog that no one is interested in anyway, especially all my self pity?

What is the point of trying to make people aware of ME?  What does it matter to those who don't have it?  Why should it be taken more seriously or researched better it's of no interest or benefit to other people and those who don't have it don't need to know about it.

What is the point of writing stories I can't do anything with so they just join the rest of the things that will never be finished off properly or be of any use to any one?

What is the point of getting up each day to follow the same routine and to push beyond my limits and then be of no use to anyone and by the time I see anyone else all I want is my bed?

What is the point of being in bed if I can't sleep or rest properly so I am tired and ad tempered before the next day begins?

What is the point of trying when all I seem to do is make a mess of things or wear myself out even when my intentions are good?

What is the point of having a family if I am useless and a burden to them and unable to join in so many things.

What is the point of reading a book when you have no idea what you have read or buying a magazine only to flick through it and wish you could do all the crafts recipes etc?

What is the point of finding recipes that we never have the to make or don't have the ingredients for?

What is the point of trying to have nice meals or healthier food when much of it gets wasted?

What is the point in complaining when no one wants to hear or has any interest?

What is the point in soldiering on when it just makes things more difficult and is not appreciated?

What should I do?

What can I do?

Why does everything feel so wrong?

What is the point of me trying to sleep when it won't make any difference to how I feel in the morning?

What is the point in being awake and worrying about everything?

It's pointless, stupid, waste of time and energy.

What is the point in spending an hour writing all this rubbish?
frown emotico

Steps.....

Today was Emily's school year 6 leavers service in church.  Only 3 years and it will be her turn!  Time moves on so fast and I feel like I have been left behind as I am so stuck with this stupid illness.  I try to move on and be happy and take pleasure from things, but the illness comes along too.

I doesn't seem that long since I was 11 and moving to high school, we didn't get such an amazing send off and celebrations like they do now, it just happened. time seems to run away with us.

In church we sang one more step along the world I go, a song we had at our wedding and Emily's christening, I'm having it at my funeral too!  It always make me think of the good times and the bad, we are constantly moving along and things are changing even if they aren't as big as moving to high school.  We mark large steps the life events, but we don't notice the little steps we take each day.  For me today the steps I had to take up to the church were slow and painful and I returned home in agony and had to go and lie down.  I don't feel good that all I could do was go to the service, but was my achievement any less than those children leaving for high school?  I hope they have nicer memories of it than me of course.

When I moved to high school that was the beginning of my health problems and my progress was very slow at times, but things did still move on.  I didn't go through high school like my peers and go on to do degrees and get good jobs etc, but life did still move on and I did what I could within ,my limitations.  Instead of being proud though I feel ashamed as I didn't do what normal people were doing and didn't get the education that they got, even years later when I got a Masters degree it felt like a failure not a success as I was older and was too ill by then to get a job.

Each day I feel ashamed of what I manage to do, to me it's usually too much, but in the grand scheme of things is not much.  This week I have made 2 cards, but I feel I should have done more.  I feel guilty because I didn't make Emily's teacher a gift (Emily made one and didn't want me to), but it still feels wrong and I might still make it as it's something I want to do, but even then I won't be happy with it.  Many of the big steps in my life have been difficult and I sometimes wonder if that puts me off making the little steps as I am afraid of failure and not doing things means I can't fail, but then I feel bad for not trying.  On the other hand each day feels like a big struggle just to manage the daily routine without fitting in other things as well.

At the moment we are taking quite a big step by having building work done, we have wanted to do it for 8 years but always put it off due to cost and stress involved, but when we inherited some money last year we decided to go for it.  It should be a happy time watching it being done and planning how it will be decorated and furnished, but I am finding it stressful and worry about the cost and getting the work done after the builders finish.  I am lucky that the builders are great and aren't intruding on my life and routine and are very happy and helpful. So why do I feel guilty for having the work done, ashamed that we can afford to do it, worried that we are showing off or being unfair to those who are worse off.  one of the reasons we are having the building done is because we felt we needed to live up to expectations and improve our house as we can't afford to move.  It will be great to have more space, but it's not essential and we could just have got rid of a load of junk instead!!  We are planning it as a room for Emily so that she can have her own space as she grows up, but then it feels like we are spoiling her and not making her realise that you can't have everything.

Then I feel guilty for the things I can do as there are many people worse off than me, much sicker than me and less fortunate than me.  My default setting seems to be guilt.

I have had a bad week thanks to someone's insensitivity which made me feel useless and like I spoil things for my family too.  When I get upset I start going through all my regrets and limitations and feel worse than ever and that I am not a good wife or mother.  My pain has been really bad, I don't know if this is linked to the emotional stuff, or possibly when I feel bad about myself I try to do more to stop the thinking and to try and prove I can do things.  The emotions are draining and I have not been sleeping, so all in all a bad week.  I need to put it behind me and look for the little the things, the good things, the things I can do.  I also started feeling even more guilty about spending money as we have a lot to pay out for and it looks like I will lose my DLA sooner than thought as the changeover to PIP has been brought forward.  Losing the DLA means I lose my Motability car and my Blue Badge which both give my my little bit of independence, even if it is only that I can take Emily to school, go to the Drs and collect my own prescriptions, it's the little things that count and make me feel part way human and useful.

Mind you maybe that is not a bad thing sometimes, today I felt really ill, but still had to collect Emily from school, I was in a lot of pain and my concentration was not great and I managed to hit a sign in the school car park, luckily no damage to the car, just my pride!

Yesterday I took another big step for me, I decided to try and make myself feel a bit brighter and  to make most of the nice weather and go on my mobility scooter to fetch Emily from school and got to the local library. I lost count of the number of people who took the mickey, stared at me or deliberately got in the way and then when we got to the library for a book I had checked online before going the book wasn't there. I asked at the counter and she said it was returned to another branch and they have lost it, so I said yes but it says it is available at this branch, that's right she said because it is our copy and was returned to another branch!!! She has reserved another copy for me, but that means I will have to pay for it which was why I had checked if it was at local branch before going. I ended fed up, annoyed and in pain, not to mention insulted and wondering why I bother making an effort to do things.

So it's back to little steps, well they are today as the pain does not allow big steps, I feel like I am shuffling along like a little old lady, which according to my daughter I am!  Think we are all feeling old this week as we mark the passing of another year, Emily keeps saying time is going too fast and she should not be this old, she is 8, but then it's only another 8 years until she can leave school and make her own way in the world.

Apparently this week they added a leap second into a day as the world is turning slower, doesn't feel like it to me! I keep saying I am sensitive to movement and it is the turning of the earth that makes me feel dizzy all the time!  Well it moves at 1,000 miles an hour that makes me dizzy thinking about it.

Well time for some little steps to the kitchen to make a cup of tea, that is one thing I always appreciate.

One more step along the world I go,
One more step along the world I go;
From the old things to the new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

Round the corners of the world I turn,
More and more about the world I learn;
All the new things that I see
You'll be looking at along with me.
And it's from the old I travel to the new;
Keep me travelling along with you.

As I travel through the bad and good,
Keep me travelling the way I should.
Where I see no way to go,
You'll be telling me the way, I know.
And it's from the old I travel to the new;
Keep me travelling along with you.

Give me courage when the world is rough,
Keep me loving though the world is tough;
Leap and sing in all I do,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

You are older than the world can be,
You are younger than the life in me;
Ever old and ever new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.