Today Is M.E. Awareness Day

The Hub has M.E. and I had intended to write about it and him but – somewhat ironically – after the day I’ve had, I’m too tired to blog.

Instead, I will re-post last year’s article (which is actually a re-post from the year before, but nothing has changed so I don’t feel guilty), and ask you to spare a thought for people like the Hub, facing prejudice and disdain from those who believe he is too lazy to work, on his best days; and too lazy to get up, on his worst.

 

Today is International CFS/ME Day.

That’s a mouthful so, in layman’s terms: millions of people across the world suffer unexplained fatigue, excruciating pain, the stigma of being called ‘lazy’, and are generally considered too idle to work.

Please consider me sticking two fingers up at those who say my husband who, before he became ill, ran his own business, travelled all over sub-Saharan Africa, trained under-14s at football, was a qualified referee who covered as many as five games every Saturday, set up and ran the official MCFC Supporters Club of South Africa and occasionally came home to remind himself of what his family looked like, is lazy and too idle to work.  I don’t buy it.

I don’t know how much you know about ME but here’s a bit of info to get you started:

It has many names, including:

• Yuppie Flu
• Myalgic Encephalomyelitis
• Chronic Fatigue Syndrome
• Post-Viral Fatigue Syndrome

Fibromyalgia is similar but not exactly the same, though I can’t really tell you the difference; and I don’t think it matters to those who suffer from these dreadful and debilitating conditions.

It robs you of a meaningful life.

You will spend your time in a haze of pain, exhaustion and prejudice – because ‘you don’t look sick’.  Someone once said to the Hub, ‘I wish I had it; I could do with six months off work.’  Now that person does have it, and it’s been a lot longer than six months.  I don’t gloat over that because I wish nobody had it.

Symptoms vary from person to person.

That’s one of the reasons it’s so difficult to diagnose and treat.  It doesn’t help that many in the medical profession don’t believe it exists.  It took two years before the Hub was taken seriously by a doctor.  He would be in bed for weeks.  When he could drag himself to the doctor’s he would invariably be told to ‘take two paracetamol and go to bed.’  One doctor said he needed a psychiatrist.

When a doctor finally did take him seriously, it took many more months for him to be officially diagnosed: the only way to do it was to rule out anything else.  He has had every kind of scan, blood test, whatever, available on the NHS.  They were thorough, but what a waste of money.

Then, once diagnosed, you are left to get on with it because there is no cure.

A few of the symptoms:

• severe, debilitating and disabling fatigue
• poor concentration
• brain fog
• poor memory
• useless sleep i.e. you never feel refreshed
• muscle pain
• headaches
• migraines
• joint pain and inflammation
• swollen glands
• sore throat
• hot sweats
• cold sweats
• noise sensitivity
• light sensitivity
• anxiety
• insomnia
• too much sleep with no benefit
• short-lived paralysis
• numbness
• twitching muscles
• tinnitus
• blackouts
• depression
• feeling spaced out
• mood swings, particularly bad moods
• nausea
• IBS
• lack of temperature control
• allergies
• chest pain
• sinusitis 

This is not a complete list.

Not pleasant, is it?

So, if you know someone with CFS/ME or Fibromyalgia, please don’t take it personally when they cancel a long-standing date or seem fidgety and uncomfortable when you visit.  They simply don’t have the required energy.  If they live alone, offer to help with their shopping, take them to appointments, or anything else they might need.

Be nice.  Don’t judge until you’ve walked a mile in their shoes – you’ll have to do it, because they can’t walk a mile in any shoes.

And be careful yourself: slow down; don’t feel the need to do everything.  Believe me, M.E. can happen to anyone.

*

An apology: I had intended to write a good-humoured piece that would send you on your way with a smile and hopefully leave you thinking a little about this illness.

I couldn’t do it.  The sufferer has all the suffering, but their loved ones have to stand by, helpless, watching as their lives go on hold.  I hate it.

The saddest thing he ever said to me was, ‘I never got to play football with my own children.’

*

Two Useful Links:

If you need help claiming benefits: AfME Fact Sheet

From a convert to the cause: Daily Mail Article

 

What About M.E.?

Today is M.E. Awareness Day

(That’s only five words, but I was too tired to go on)

I wrote this for last year’s M.E. Awareness Day.  Nothing has changed, so I decided to re-post it as I wrote it.

Today is International CFS/ME and Fibromyalgia Awareness Day.

That’s a mouthful so, in layman’s terms: millions of people across the world suffer unexplained fatigue, excruciating pain, the stigma of being called ‘lazy bones’, and are generally considered too idle to work.

Please consider me sticking two fingers up at those who say my husband who, before he became ill, ran his own business, travelled all over sub-Saharan Africa, trained under-14s at football, was a qualified referee who covered as many as five games every Saturday, set up and ran the official MCFC Supporters Club of South Africa and occasionally came home to remind himself of what his family looked like, is lazy and too idle to work.  I don’t buy it.

I don’t know how much you know about ME but here’s a bit of info to get you started:

It has many names, including:

• Yuppie Flu
• Myalgic Encephalomyelitis
• Chronic Fatigue Syndrome
• Post-Viral Fatigue Syndrome

Fibromyalgia is similar but not exactly the same, though I can’t really tell you the difference; and I don’t think it matters to those who suffer from these dreadful and debilitating conditions.

It robs you of a meaningful life.

You will spend your time in a haze of pain, exhaustion and prejudice – because ‘you don’t look sick’.  Someone once said to the Hub, ‘I wish I had it; I could do with six months off work.’  Now that person does have it, and it’s been a lot longer than six months.  I don’t gloat over that because I wish nobody had it.

Symptoms vary from person to person.

That’s one of the reasons it’s so difficult to diagnose and treat.  It doesn’t help that many in the medical profession don’t believe it exists.  It took two years before the Hub was taken seriously by a doctor.  He would be in bed for weeks.  When he could drag himself to the doctor’s he would invariably be told to ‘take two paracetamol and go to bed.’  One doctor said he needed a psychiatrist.

When a doctor finally did take him seriously, it took another six months or more to be officially diagnosed: the only way to do it was to rule out anything else.  He has had every kind of scan, blood test, whatever, available on the NHS.  They were thorough, but what a waste of money.

Then, once diagnosed, you are left to get on with it because there is no cure.

A few of the symptoms:

• severe, debilitating and disabling fatigue
• poor concentration
• brain fog
• poor memory
• useless sleep i.e. you never feel refreshed
• muscle pain
• headaches
• migraines
• joint pain and inflammation
• swollen glands
• sore throat
• hot sweats
• cold sweats
• noise sensitivity
• light sensitivity
• anxiety
• insomnia
• too much sleep with no benefit
• short-lived paralysis
• numbness
• twitching muscles
• tinnitus
• blackouts
• depression
• feeling spaced out
• mood swings, particularly bad moods
• nausea
• IBS
• lack of temperature control
• allergies
• chest pain

This is not a complete list.

Not pleasant, is it?

So, if you know someone with CFS/ME or Fibromyalgia, please don’t take it personally when they cancel a long-standing date or seem fidgety and uncomfortable when you visit.  They simply don’t have the required energy.  If they live alone, offer to help with their shopping or anything else they might need.

Be nice.  Don’t judge until you’ve walked a mile in their shoes – you’ll have to do it, because they can’t walk a mile in any shoes.

And be careful: slow down; don’t feel the need to do everything.  Believe me, it can happen to anyone.

*

An apology: I had intended to write a good-humoured piece that would send you on your way with a smile and hopefully leave you thinking a little about this illness.

I couldn’t do it.  The sufferer has all the suffering, but their loved ones have to stand by, helpless, watching as their lives go on hold.  I hate it.

The saddest thing he ever said to me was, ‘I never got to play football with my own children.’

*

*

Related articles

• Why Can’t Medical Science Figure Out Chronic Fatigue Syndrome? (psychologytoday.com)
• Thoughts on An Alarm System Gone Awry: Pain in Fibromyalgia & Chronic Fatigue Syndrome (blogsbyrobin.wordpress.com)
• Why Fibromyalgia could be misdiagnosed… (nashuafibrosupport.wordpress.com)
• Please – International Awareness day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromyalgia (FM) (fibromodem.wordpress.com)
• Fibromyalgia FAQ: Frequently Asked Questions About Fibromyalgia by Margo Watson (drbradshook.com)
• http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrofactsheet.htm
• http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfsfactsheet.htm

What About M.E.?

Today is International CFS/ME and FM Awareness Day.

That’s a mouthful so, in layman’s terms: millions of people across the world suffer unexplained fatigue, excruciating pain, the stigma of being called ‘lazy bones’, and are generally considered too idle to work.

Please consider me sticking two fingers up at those who say my husband who, before he became ill, ran his own business, travelled all over sub-Saharan Africa, trained under-14s at football, was a qualified referee who covered as many as five games every Saturday, set up and ran the official MCFC Supporters Club of South Africa and occasionally came home to remind himself of what his family looked like, is lazy and too idle to work.  I don’t buy it.

I don’t know how much you know about ME but here’s a bit of info to get you started:

It has many names, including:

• Yuppie Flu
• Myalgic Encephalomyelitis
• Chronic Fatigue Syndrome
• Post-Viral Fatigue Syndrome

Fibromyalgia is similar but not exactly the same, though I can’t really tell you the difference; and I don’t think it matters to those who suffer from these dreadful and debilitating conditions.

It robs you of a meaningful life.

You will spend your time in a haze of pain, exhaustion and prejudice – because ‘you don’t look sick’.  Someone once said to the Hub, ‘I wish I had it; I could do with six months off work.’  Now that person does have it, and it’s been a lot longer than six months.  I don’t gloat over that because I wish nobody had it.

Symptoms vary from person to person.

That’s one of the reasons it’s so difficult to diagnose and treat.  It doesn’t help that many in the medical profession don’t believe it exists.  It took two years before the Hub was taken seriously by a doctor.  He would be in bed for weeks.  When he could drag himself to the doctor’s he would invariably be told to ‘take two paracetamol and go to bed.’  One doctor said he needed a psychiatrist.

When a doctor finally did take him seriously, it took another six months or more to be officially diagnosed: the only way to do it was to rule out anything else.  He has had every kind of scan, blood test, whatever, available on the NHS.  They were thorough, but what a waste of money.

Then, once diagnosed, you are left to get on with it because there is no cure.

A few of the symptoms:

• severe, debilitating and disabling fatigue
• poor concentration
• brain fog
• poor memory
• useless sleep i.e. you never feel refreshed
• muscle pain
• headaches
• migraines
• joint pain and inflammation
• swollen glands
• sore throat
• hot sweats
• cold sweats
• noise sensitivity
• light sensitivity
• anxiety
• insomnia
• too much sleep with no benefit
• short-lived paralysis
• numbness
• twitching muscles
• tinnitus
• blackouts
• depression
• feeling spaced out
• mood swings, particularly bad moods
• nausea
• IBS
• lack of temperature control
• allergies
• chest pain

This is not a complete list.

Not pleasant, is it?

So, if you know someone with CFS/ME or Fibromyalgia, please don’t take it personally when they cancel a long-standing date or seem fidgety and uncomfortable when you visit.  They simply don’t have the required energy.  If they live alone, offer to help with their shopping or anything else they might need.

Be nice.  Don’t judge until you’ve walked a mile in their shoes – you’ll have to do it, because they can’t walk a mile in any shoes.

And be careful, slow down, don’t feel the need to do everything.  Believe me, it can happen to anyone.

*

An apology: I had intended to write a good-humoured piece that would send you on your way with a smile and hopefully leave you thinking a little about this illness. 

I couldn’t do it.  The sufferer has all the suffering, but their loved ones have to stand by, helpless, watching as their lives go on hold.  I hate it.

The saddest thing he ever said to me was, ‘I never got to play football with my own children.’

*

*

http://www.afme.org.uk/allaboutme.asp?table=contenttypetwo&id=4

http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm

http://chronicfatigue.about.com/od/whatischronicfatigue/a/understandCFS.htm

http://chronicfatigue.about.com/od/forfriendsfamily/a/lifeafterfmscfs.htm

http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrofactsheet.htm

http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfsfactsheet.htm

I Won’t Dance; Don’t Ask Me

Thanks to my sisinlawann for sending me this link:

Despite his recently diagnosed restless legs, the Hub can’t dance any more.  The Hub can barely walk downstairs any more without being out of breath.  We thought it was the CFS/ME but when he went to the doctor about his legs she had him take a blood sample.  Turns out he’s anaemic.  It’s quite rare in men so he has to go to the hospital for an invasion.*

*The Hub swears she said ‘examination’ but from the disgusting things they might possibly be doing to him, ‘invasion’ sounds nearer the mark.

The silver lining to all this, of course, is that at least it’s him and not me.  I can’t put a large forkful of food in my mouth without gagging; it’s why I don’t eat trifle.

The Hub won’t be doing this any time soon (though he will probably manage the first bit of the video):

I used to love dancing.  I can tap dance, and I have three certificates and a bronze medal to prove it.  I also have scarring on my arm: as a child, I swung round and round in dancing joy and accidentally clocked the dog and he bit me.

Um, maybe that’s a slight exaggeration for dramatic effect: our aged golden labrador, Bruce, happened to be yawning as I span spun spinned whirled around and my arm went in his mouth and he licked me.  I shouldn’t malign that beautiful old dog; he was so gentle, the budgie would land on his head and peck him and he would run under the couch to get away from it.

This isn’t him:

Of This, That ‘n’ T’other

I’ll get the serious stuff out of the way first.

• I don’t know whether to be pleased or irritated with an article that I came across: a doctor who writes for the Daily Mail magnanimously concedes -below an article on haemorrhoids – that CFS/ME is ‘real’ because he attended a conference that said so.  Thanks, Doc; I’m sure the estimated 250,000 sufferers in this country, many of whom have doctors as uninterested and unsympathetic as you have been, are grateful to be taken out of the category Lying, Time-Wasting Toe-Rag.  I’m ambivalent because yes, it makes me angry that anyone would think my hard-working, hard-playing husband would prefer to lie around the house faking pain and fatigue than provide for his family and enjoy a rich life, maybe playing football with his sons or taking his wife out to dinner; but our ME community is so reviled amongst so many in the medical profession that any acknowledgment that this is a real and debilitating condition is welcome, no matter how patronising the delivery.
• The Hub took part in a study of CFS/ME patients a few years ago, called the FINE Trial (Fatigue Intervention by Nurses Evaluation).  A nurse came to the house once a month for about six months and talked with him.  The idea was to see if a talking cure worked – presumably to test the theory that it was all in his head.  It didn’t help much – presumably because it’s not all in his head.  What did help the Hub was having a sympathetic ear from a stranger; I don’t think people realise the deleterious effect on the psyche when even family and friends – those alleged to know your character – think you’re idle and/or faking it.  There was one person who told the Hub ‘I wish I could get it; I could do with six months off work.’  Try fourteen years and see if you still feel the same.
• You can read a simple summary of the report here.  The conclusion I found interesting was: supportive listening is not an effective treatment for CFS/M.E.  No kidding.  Supportive listening won’t fix a broken leg either; I wonder why that is?
• Here’s a cartoon that pretty much sums up the medical position on CFS/ME:

That’s enough bitterness for one day; this is supposed to be a funny blog.

• I heard a quote yesterday, attributed to the writer Kate Fox: Why do Geordies have an existential problem?  Because they’re always saying, ‘Why I?’ 
• It’s not the exact quote; I Googled it and couldn’t find it, but I did come across a poem of hers that tickled me, especially this line:     Glad never to leave one particular Lancashire town?/That’s Stockport syndrome.
• A sad exemplar of our times over at Parentdish: a reality tv show in the States about a modern Partridge Family has not been aired for over two years because the family is – wait for it – too happy: Despite two years of effort by a television crew to show the seamy underbelly of the family Witchger, CNN reports too many family confessionals ended with smiling kids and parents saying, “It was really fun.”
• I had a giggle at a friend’s recent Facebook status; she has a husband named Brian; I’m pretty sure she meant to type ‘brain’: Going to sleep now; worn out from brian’s overactivity.

Finally, we haven’t had a poem for at least two days, so here’s a bit of fluff for Carry on Tuesday.  The prompt was to use the line One misty moisty morning from the 1973 Steeleye Span song.  Don’t ask me how I ended up with this, because I have no idea:

Boat Race

One misty, moisty morning
a hoity-toity Cambridge few
goaded the gangly, spangley crew
who wore the Oxford Blue:

You shall not prevail, they cried;
when the Thames has reached high tide
we’ll kick your Cox over the side
and then the rest of you.

  

I don’t even watch the boat race, though I still sigh over the memory of Rob Lowe in Oxford Blues – and any other film/tv/photograph in which he appears. 

Sorry, I have to stop typing now; I appear to be drooling.