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!!

Not Enough Beans

I found this explanation of ME energy very good and easy to understand, http://sweetbriarsisters.com/blog/cfs-awareness-understanding-crashes/.  I have pasted the full article here;

How To Understand CFS Crashes in 5 Minutes or Less

If you have a friend with Chronic Fatigue Syndrome you’ve, no doubt, heard about how she’ll crash after an eventful day.  But hearing about such a thing and understanding it are two very different things.  What amount of activity is ok and what isn’t?  Does she crash all the time or only every once in a while?  How can you make sure that you aren’t the cause of one of her crashes?

The answers aren’t always simple, but it can help to understand a little more of what’s going on.  I created the following image to explain what it feels like.  It’s not based on science (though there are studies showing  what’s going on, but they are way harder to understand than my cute little pictures!), just based on my life.  For those of you who ever wondered what my life is like- here it is as best as I know how to describe it.  I do these calculations every single day.

It is so hard for people even those of us with ME to understand how to make best use of our energy and why we get payback for what we do.  Also to explain why we can do some things if it is worth the effort, although its not always possible and varies on a daily basis.

It makes sense explain this way, its a bit like getting a loan you can live of that money for a bit, but then it runs out and if you keep borrowing then you will end up in big trouble at the end of the day.  If you keep borrowing the effects just last longer and longer and eventually there is nothing to borrow from and an awful lot to payback.  

Everyday life can easily use up all the beans and you can't just go out and buy more as you need beans to do that.  Of course every day is different and the number of beans varies as does the demands on your beans and there is nothing for an unexpected event like a visitor, a child's tantrum or an emergency which can leave you borrowing well into next week!

Of course this still doesn't make life any easier and the people who need to understand what happens to us probably won't be reading this as they are not interested or think they know already.

Wouldn't it be easy if the solution was just to eat more beans!