Tag Archives: ME

Today Is M.E. Awareness Day

12 May

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

 

When Is M.E. Not a Neurological Condition?

30 Oct

Answer: When it is time for a flu jab.

"The One Ring" from J.R.R. Tolkien's...

“The One Ring” from J.R.R. Tolkien’s works (Photo credit: Wikipedia) If only medical reception phones worked like this

Sigh.

The NHS gives free flu jabs every year for those with certain conditions, including pregnancy and anything neurological.  I freely admit the Hub is not pregnant, but he has M.E. which is most definitely a neurological condition.

Unless I try to book his jab, that is.  Every year we go through the same much ado about something important:

Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring Ring [The phone in the doctor's surgery] 

Receptionist: Hello, this is your medical centre speaking.  How may I obstruct you?

Tilly Bud: Hello Beautiful Lady, Keeper of the Appointment Book.  Please may I book a flu jab for my husband if it’s not too much trouble for your Kindly Beautifulness?

Reception [Barks]: Name?

Tilly Polite: The Hub.

Loooooooooong pause.

Recepti [Grunts]: Of number street name?

Tilly Politer: That’s right, O Clever Hoarder of the Surgery Pens.

Recep [Indignant]: He’s not eligible.

Tilly Desperate [Sigh - inaudible to avoid provoking the beast]: We have this discussion every year, dear Starched Muffin of the GPs.  He has M.E., which is a neurological condition.  If you don’t mind checking his record, Lovely Tracker of the Public Toilet Toilet Paper, you will see that he has had the jab every year.

Rec [Reluctant but Dutiful]: I’ll have to speak to the nurse and get back to you. Wait by the phone.  Do not take toilet breaks.  Do not pass/go.  Let your bladder burst and soil your seat before leaving the designated hearing-of-the-ringing-telephone area.  I will make one call only.  No reply from you, and I will disappear from the face of the earth with any possible appointment that may or may not be offered or not offered to your alleged eligible spouse.  Do you understand these conditions as I have explained them to you?  DO YOU?

Tilly Terrified: Yes, O She Who Wields All The Power.  Thank you for your great mercy to this humble supplicant.

R: Don’t mention it.  No, seriously, don’t mention it.  I don’t want the other patients knowing I have a softer side.  [Hangs up]

Tilly waits.

Waits.

And waits.

Still waiting.

Yellow pool starts to rise.

Waits.

What About M.E.?

12 May

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.’

*

*

Unhappy Anniversary

15 Aug
South Africa (orthographic projection)
Image via Wikipedia

Imagine it’s August 2021 – what is your life like?

If ever there was an exercise in futility…. 

On this very day, Fifteenth August, 1996 – fifteen years ago – I arrived back in the UK after fourteen years in South Africa, with two children, two prams, eleven trunks full of stuff I wouldn’t see for eight months, six suitcases, and the expectation that the Hub would follow me and we would have no trouble finding jobs, a home and a happy new life.

The Hub followed me, so that was something.

We found ourselves homeless and jobless; he got sick with CFS/ME; our money ran out; and three of our parents died within eighteen months of each other.  Did you ever stand in a hurricane and wonder how you got there?  Me neither, but I bet I know how it feels.

Work for a better future, definitely; but don’t expect it.  Expectations are a waste of time.  Dreaming is a waste of time.  Live in the now, and make the most of it; be grateful for what you have – a happy marriage; great kids; much laughter; a roof over your head and food, however burnt, on the table.

I’d rather look back on laughter and good times than hope for it to come, because there are no guarantees.

Thank You

14 May

For your comments offering support and sympathy.  They were appreciated much more than you will ever know.

I will go back to them on blue days.

What About M.E.?

12 May

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

A Massive ‘Thank You’ And An Update

16 Mar

What brilliant readers you are!  Thank you all so much for your supportive comments on yesterday’s post.  I can’t tell you how much it means to me.  I sometimes feel like we are living in a vacuum, coping with ill-health, no work, no money, and little support.  I haven’t felt like that today.

Thank you.

I want to address a few issues that arose from the comments. 

I don’t read the Mail; I linked to the article from a Google alert I have set up for all CFS items that appear online.  This particular article was written for their Science & Tech page.  The Telegraph also covered the Skiver app story, but the tone was not so low.

Making a formal complaint: I have to admit, it never occurred to me.  I have strong feelings about the right to free speech and a free press: Ms Rees is entitled to her opinion, however misguided I might think her, or how inconvenient that may be to me.  I had no compunction in availing myself of the right to upbraid her: freedom of speech works both ways. 

The reporter may have been insensitive – it was her ‘Poor you’ after the mention of CFS that so enraged me – but I’m not convinced she broke any guidelines, so I don’t feel I have the right to complain.  I do very much appreciate your indignation, however; and I hope you don’t think I’m letting you down.

What I did do immediately after posting last night was send the link to the MailOnline editor, with a request that s/he forward it to Ms Rees.  I had to laugh; the automated reply came back with this information:

Our Email Support Service is able to provide you with :

Information on CFS/M.E.
Details of local NHS services for CFS/M.E.
Support to help you cope with the illness
Support for carers

I also sent the Mail link to Action for M.E., a charity campaigning for better recognition of the condition.  They had this to say:

Like you, we took serious issue with the reports in yesterday’s media that make light of the ‘Skiver’ app encouraging people to use CFS/M.E. as an excuse to take days off sick.
 
We wrote to the Daily Mail and the Telegraph expressing our concern. We also wrote to the makers of the app itself, who have been in touch to apologise. You can read about this here: http://www.afme.org.uk/news.asp?newsid=1079

I was pleased to note that they had acted so quickly.  You can read the whole article at the above link but here’s the important bit:

A senior Gospelware representative has replied, saying:
 
“Please accept my sincere apologies if we upset or offended you or your members in any way. The app was meant to be a bit of fun, and from feedback I now realise that we got it totally wrong in using CFS in this case.

It hadn’t occurred to me to complain to the app maker for trivialising CFS, so I’m glad to know the people at AfME are on the ball.

I haven’t had a response yet from Gwyneth Rees; if I do hear anything, I will let you know.

Once again I’d like to say a big ‘thank you’ to everyone for your support; it means much more than you will ever know.

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