Thursday, May 01, 2014


I wrote this last week whilst away on respite, it was not mentally restful!

I have ummed and erred since about whether to commit to print.  it is taking up a lot of space in my mind and is making me unsettled so therefore I think it is beneficial to let it out.

I am sorry in advance if I upset or offend anyone; that is the last thing I want to do. This is about my own thoughts and feelings.

My husband has read this and thinks I should publish it online so here goes.


The Wikipedia definition of honest is "a facet of moral character with positive and virtuous attributes such as integrity, truthfulness and straightforwardness.  Being trustworthy, loyal, fair and sincere".

One of my biggest bug bears is people who lie.

This was highlighted when reading a book about a place accident and the cause being covered up and a coroner have to give a verdict of unknown cause, because the truth could not be told and she would lose her job if she was honest.  There were a lot of twists and turns and cover ups etc and I can't remember all the details as it was complicated, but it was the lies and deception that really stood out and set me thinking.

We tell our children not to lie and tell them of if they do, yet as adults most of life is a lie, often with good intentions, but even so, lying is wrong.  As I was reading it struck me how much time and money is either spent creating lies or uncovering them and often the truth is not discovered as the liars are better at telling their tale and people telling the truth are made to feel like frauds.

Benefits are claimed by many frauds and it seems that fraudulent claims are more successful than genuine claims.  The genuine people are told they don't qualify and are penalised for telling the truth, whereas a liar builds a convincing case - how is that right?

Being brought up in a household with financial problems and health issues, but where things were never talked about or false information given, makes me hyper sensitive to lying and cover up even if the intentions are well meant.  I would rather it was cards on the table whatever the truth - the truth is often easier than the fears created by deception or protection.

This said you would think I am honest as the day.  Wrong.  I am currently away, not many people know as I think they disapprove.  I haven't lied, just not said anything.  I don't want to be thought selfish or useless or unfair to my husband and daughter, so I feel like I am hiding away in secret.  I write this blog about living with ME, but don't mention a lot of things as I don't want to be accused of being a fraud.  If I write about being away which is paid for with SDS which is basically tax payers money I think there would be uproar, even though it is approved by the City Council as an alternative to traditional respite and its not like I am having it easy.  To get here my husband had to take me in my wheelchair to the train as it is too far to walk into the station and to the platform.  When I get here it is straight off the platform to a taxi, so that's ok, but the travelling still takes its toll and I suffer great pain and other symptoms from the movement and noise.  Once I arrive I can't get around so stay in the hotel until my husband comes to pick me up.  I potter about inside and make use of the different rooms and the peace and quiet.  Being confined actually helps me to look after myself and rest to recover from the journey and my usual daily routines.  If I had my mobility scooter or people with me I would want to be out and about doing things which is not respite.

How many times a day do we do something dishonest to please others or to feel like its the right thing.  If someone asks me how I am, I usually say "ok"; that's rarely true.  If I say "not feeling great", I get "oh so glad you are feeling better" or "you look really well today" or many other variations and on the whole people don't really want to know, its just a phrase like saying hello, but if you don't ask how people are you are considered rude.  Isn't it more rude to ask a question you don't want to know the answer to, or don't listen to the answer.  I don't often ask how people are, not because I don't care or because I am rude, if someone wants me to know they will tell me and they usually do in great length if only to make me feel guilty or like a fraud, because I have ME and they have something much more serious like a cold!

Even though I tell people I am ok, which is not true, I still feel as if they think I am useless and always complaining and making a big deal when I have said I am ok and not said anything, but if I was honest I would not be heard either - how strange.  If I am honest and ask for help with something then I get treated with disdain or like I am making a fuss.  To avoid this I have to be dishonest with myself and push boundaries and feel ill and then because I have done something I am expected to do it all the time, but can't and have to sacrifice things that are more important or things for myself.

Sometimes it is hard to be honest with ourselves or others as we want to be able to do things and don't want to disappoint, but don't realise how hard it will be or that we are setting ourselves up for failure.  I feel like people expect me to fail and I prove them right by taking on too much.  I miss out on things that I want to do in order to keep up a front and appear organised and "correct" and then can't do something I really want with Emily or for myself as that pile of washing took priority!?

How can I expect my daughter to be honest and understand when I say "Mummy can't play with you", when I have just been tidying up or using computer.  Or if I say Mummy needs help to hang up the washing, her thought is well you did it yesterday - you just don't want to play with me.  If I am with other people I will sometimes forego my daily 2 hour rest, not without consequence though.  But to rest feels like I am drawing attention to myself or making a fuss or that it is rude to the people I am with.  But then when its just me, Emily and Rob I nearly always have rest, but never leave Emily on her own, which means getting help or going without during school holidays.  Emily does not always understand that I need it just to function and and says I don't care or don't want her.  I am being honest in my need for a rest, but because I was dishonest with others it makes it look like my need is a lie.

When Emily was little she didn't like chocolate so at Easter I asked if people would give her something other than chocolate.  For some it was fine, with others my honest back fired and they took it as an insult and just gave her more even though she didn't  like it.  We used the chocolate to make chocolate crispies and gave them away.  Then she started to like chocolate and people thought I had been lying and was just mean. I still don't want her to have a lot as she easily gets stomach ache from it.  When it got to the year that one person gave her three Easter eggs, I got cross and complained.  I was being honest and felt it was unfair as it is me who has to ration the chocolate and I also feel like I can't give her things myself.  Maybe its also part of my childhood, but my parents gave us books at Easter instead of chocolate as we got plenty from others. I tried giving children other gifts instead, but it was frowned on so under pressure now give chocolate to keep the peace.  I gave small bite sized eggs this year in the hope that they eat less rather than stuffing faces.  Emily of course got loads except from a couple of people who accept what I asked.  Emily of course is thrilled with all the chocolate, but we have many tummy aches and upset stomachs to deal with as well as battle of wills.  Might be making chocolate crispies soon.

Another incident that really sticks in my mind is last year we went away from home for my birthday, which is also my wedding anniversary and it was Father's day.  We had agreed before we went that we would take cards with us and give presents at home.  The morning arrived and I  gave Rob his card and got nothing in return.  I was cross because I had made a card especially and we had specifically agreed just to take cards.  He said he had forgotten it, but I could tell he was lying and was upset even more that he could not be honest.  When we got home still no card and he admitted that he had not got one.  This made me very cross again we had specifically spoken about cards and he had agreed.  it was my birthday and I got nothing, he got a handmade anniversary card a Father's day card, it made me feel as if I was worthless.  I know he thinks cards are a waste of time, but encourages me to make them.  I do often wonder why as most people don't even say thank you let alone say if they like it.  Then a few days later my hard work will go in the bin, it doesn't exactly give me much motivation.

Being honest can also get you into trouble.  It's difficult to know how to write some of these things, but as this is honesty, here goes.  We were having big issues with Emily's behaviour and things at home were very fraught so I asked for advice from local family support services and organised a meeting.  I was getting increasingly upset with Rob's attitude towards Emily and told them that Rob sometimes smacked her when she was naughty.  I was smacked as a child, as were most kids in the 1970's, but when Emily came along I began to realise that it was wrong.  How can you tell a child not to hit another person, but then smack them or tell them to keep their temper under control when you lose control and smack.  Rob knew my views, but did not completely agree.  Well all hell let lose and social services were called in and school notified.  We then has ten days of chaos over the school holidays with social services assessments and reports.  We all had to be interviewed separately and asked some awkward questions.  In the end they decided that Emily was quite safe and we were good parents and the case was closed.  It was awful to have to go through and put a great strain on us and all this could have been avoided if I had lied.  The upside of my honesty is that Rob is much calmer, more attentive and has not smacked since.  So hopefully this shows honesty does pay.

During this time which came after a hectic Christmas and the run up to Emily's birthday we cut ourselves off from people a bit.  I began to feel guilty and emailed family and friends to say sorry we were not ignoring them and were just having a tough time.  Most people just ignored the email, some did reply and say they understood.  Also at this time I asked for some help with an outside project that is too much to do ourselves.  We rarely as for help and now we know why, people either made excuses (some of them valid) or ignored the request.  We have one helper!  We won't ask again and may also think twice before we drop everything for others.  This reinforces my feelings that people do not understand our circumstances and do not care.  Thank you to the one person who is helping, despite his wife being in hospital and to my PA who says she will help too. Otherwise it would have been Rob on his own with me and Emily getting in the way and needing to be looked after.

Going back to honesty and children.  The biggest lies we tell are to children. Santa, the Tooth Fairy, Easter Bunny (where did he come from, we never had an Easter Bunny).  Emily is terrified of all of them, the thought of some stranger in the house.  She usually wants to sleep with me when we are expecting a visit.  I spent Christmas eve in a single bed with her, even though she was sleeping in the same room as we were at parents/grandparents, she insisted on sharing the bed.  I didn't get much sleep, but Emily was happier.  What trauma are we subjecting her to, but if we tell her the truth she would want every other child to know, not sure that we would be popular then.  We are put in the position of buying lots of presents because some are from Santa etc, so then kids need something from parents too, difficult if Santa gives the main present, parents look like they don'rt care so buy more. I got caught out with the Easter Bunny as I just bought a few things combined from us and bunny, but Emily wanted to know which was which.  I also did and Easter egg hunt and Emily decided to email eater bunny (he has an address) to ask how many eggs there were.  Of course EB does not reply and I have not worked out how to send anonymous emails as she will want to see it.  Christmas is difficult as we get involved with making shoe box gifts for Operation Christmas child.  Emily wants to know why they don't get stuff from Santa as he goes to every child.  It will be so much easier when we can tell her the truth, but it also kills the magic of Christmas.

Here are some quotes that I have seen that I thought went with this topic rather well.

Disclaimer; The opinions voiced her are solely mine and are not intended to upset anyone.

All images and website content are ©2014 Jane Shaw

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