Happiness Barometer by Debbie Deboo

Debbie's a friend of mine. She posted a link to one of her blog posts on Facebook today, so I snuck over and had a snoop. Let me share it with you:

I found some old photographs the other day, pre illness. In some of them I’m sitting in a festival field with purple hair and a paper cup of beer in my hand surrounded by crowds. I have a big smile on my face. I post them onto Facebook and someone remarks ‘you look so happy’.

That got me thinking, yes of course I am unhappy with my illness but I hadn’t really realised the extent of how much it showed in my face and how my eyes now didn’t sparkle and my smiles were much more muted. I don’t set out to look unhappy and in fact I don’t go around feeling miserable, I think I’ve just fogotten what it is like to be SO happy. To be with friends, enjoying myself with beer and music, which of course never happens anymore.

It got me thinking about Richard and how his happiness must have been affected, he was sitting in that festival field too, smiling. He doesn’t go to festival anymore, and he isn’t ill. he stays with me….

I guess our barometer of feelings is based on a sliding scale and that sliding scale adjusts…..

I don’t feel particularly unhappy but maybe I’ve forgotten what happiness feels like.

It had me in tears. I had such a similar experience recently. I scanned all of my old photographs a couple of years ago. Then last year uploaded some to Facebook. The husband of a friend of mine was obviously looking through them. I've known him about a year, met him properly just the once. He sent me a private message saying simply 'What happened to you?'. Asking what he meant he asked me why I used to look so full of life, even despite being depressed, but in my more recent photos and when he met me that spark is gone.

That's M.E.. Unfortunately that's what it does to us. 'What happened to you?' is a question that will remain with me for some time to come.

Fibromyalgia is a joke?

Disagree with the title of this blog post? I do. If you're on Facebook, please go to this page and report it:

STOP the Whining!!! Fibromyalgia is A JOKE

How to report a page on Facebook:

• Next to 'message' click the little arrow.
• Select 'report page'
• Select 'hate speech'
• Select 'targets people with a disability or disease'
• Click 'continue'
• Check 'Report to Facebook'
• Click 'continue'
• Click 'ok'

Just a sample of what the delightful individual who made the page has to offer:

Is Fibromyalgia a disease with a physical pathogen, or merely the result of depression and stress? The pain may be 'real' but the cause may be literally all in your head.

One sure way to stir up controversy is to say that Fibromyalgia or Chronic Fatigue Syndrome or some other illness that has no physical symptoms (other than reported pain) is a made-up illness. People will get incensed and say, "Our Pain is Real!"

And that may be true. But pain does not occur in your joints, your muscles, or even in your nerve endings. No, it occurs in your mind. Even if someone saws your leg off with a chainsaw, the pain doesn't occur in the leg, but in your mind, where you actually feel pain. Similarly, you do not "see" with your eyes, but rather receive light signals. It is the mind that assembles these into images that we see.

But mental illnesses have a stigma in our society. And depression is one of those illnesses where we tend to blame the victim. "Cheer up!" we say, as if it were a cure. And people are thus reluctant to seek help for depression, convinced it is too trivial a matter to bother a doctor about.

And as a result, it is not uncommon for a lot of maladies to appear in the mind - psychosomatic illnesses. And these do occur with regularity, particularly among depressed people or hysterical teens. And some folks often make hay from these things - doctors or political activists with an ax to grind.

And the sufferers from these illnesses do enjoy the attention they get, and are comforted in having an official diagnosis of their ailment. After all, just "getting too old" or "drinking too much" or "being depressed" are not as concrete a diagnosis as a mysterious disease without any physical symptoms - other than pain. The mysterious disease has a name and a cache. And if anyone calls you out on it - that it might be fake - even the Doctor who first gave it a name - you can go on the offensive and call them all sorts of nasty things. Just wait for it...3.....2.....1.... FLAME!

He is right. It's made me very angry. I do not suffer with depression, so I disagree very strongly that FM or M.E. / CFS are physical manifestations of mental illness. I have suffered from depression and anxiety for years in the past, and yes, some of those years were while I was ill. I had a breakdown in 2001. I am not ashamed in the slightest to admit any of that. It says something about the author of the page that he assumes that every single person with Fibro would be ashamed to admit they had any psychological conditions. A few of my Fibro friends do, and they're not ashamed to admit it either.

I am insensed that someone has made this page. I do not understand what they stand to gain from it. I am assuming that there must be someone in their life who has Fibro, and they are jealous of the attention that person, or those people, get. He has talked about enjoying the attention from the illness after all. Personally, I do not get any attention from the illness, so I don't really understand what he is talking about there.

This is hate speech, plain and simple, and it should be squashed.

What I really have!

I feel a little guilty posting this really, but the nature of such pictures is that they are sweeping statements, so I'm going with it. (Do feel free to post this to Facebook if you feel it's appropriate). Please do not be offended if you are a friend or family member of someone with M.E. who actually does understand.

M.E. is so frustrating sometimes. At times it feels that absolutely no one believes we're ill. Sometimes I even find myself doubting the existance of the illness myself. Anyone doubting my health condition (especially myself) always proves to be detrimental to my health, as it results in me pushing myself. When I failed the Atos Medical Assessment, for some reason my reaction was to believe that the nurse knew better than I did what I was capable of; I pushed myself extremely hard, crashed and burned even harder.

Possibly, if some of us post this on Facebook, a few people who had previously not really given M.E. much thought will understand that this image is portraying pain and anguish, frustration, and severe illness, and they may just think a little bit more about the fact that we are ill.

We are ill. Please don't doubt it.

Raise money for Young People with M.E.

Jane, one of the members of one of the groups I belong to on Facebook, wishes to raise money for the charity AYME. Yesterday my boyfriends mother did a sponsored run in aid of Cystic Fibrosis. It made me a little sad knowing that most of us with M.E. would love to raise money for charities, but we can't do sponsored runs, or walks, etc. Jane has come up with a novel idea; she is going to give up Facebook for a week to raise money. If you are able bodied, and healthy, this may not sound like much of a challenge, but please believe me when I say it is. When you are housebound, or worse, bedbound, the internet is a lifeline. Facebook is one of the few social mediums many of us have. Giving it up for a week, for me at least would be amazingly challenging, so I really admire her for this.

So please, I urge you to sponsor her. You can do so through Just Giving, here. Give as little or as much as you can!