SMILER GIRLPANTS & DR ANNE MACINTYRE

Bonjour, 

I started this week with yet again more sad news and the loss of two people in the M.E. community. 

So I want to dedicate this blog to them. 

The first one was Smiler Girlpants  who was Facebook friend of mine and an M.E. warrior. It's even sadder because it was sudden and she was talking about the future with her partner, a wedding and buying a home. She will be very much missed.

The other loss was Dr Anne Macintyre. 

"  Anne will always be remembered as an extremely kind and compassionate doctor who helped large numbers of people with M.E. over many years.

She helped them obtain a diagnosis, to get appropriate management advice and she provided support when they were battling with the DWP over benefit entitlement.

She will also be remembered for her book ‘M.E. A Practical Guide’ which was extremely well received and is still regarded by many as being one of the best."

Her book for me became the bible of M.E. 

When I fell ill in 2002/2003 I didn't have the internet and I knew no one who was suffering with the same symptoms as me. 

I searched everywhere for information or for a book that would help me. I searched in my local library and in the town's bookshop. 

I found the book written by Dr Anne Macintyre entitled 'M.E. chronic fatigue syndrome a practical guide' .  I bought the 1998 edition which I still have to this day even though it's a bit dog eared and I've scribbled all over it! It validated how I was feeling and I could identify with everything she wrote as well as providing me with lots of help. It has been invaluable. Even though I never knew or met Anne Macintyre I will be forever grateful to her. 

Miranda Brewster has made a very useful video explaining the book

  
This is Annie's main documentary on exposing the medical scandal surrounding M.E. 

In her video Anne talks about Lyn Gilderdale. You can read the very sad story about her and her mother here 

Anne also talks to Ean Proctor and his terrible mistreatment that happened in the 1980s. Read his story here 

We have to thank Dr Anne Macintyre for relating these stories and the unbelievable suffering that took place. She placed these testimonies on record so we can see the ignorance of doctors at that time and the terrible treatment that was inflicted. 

I think, not just myself, but the whole M.E. community have a lot to thank Dr Anne Macintyre for. 

If you have never read her book or watched these videos I suggest you do so today. I'm sure you will also find them interesting but you need to realise that this took place in the 1980s 

Au revoir
The French Femme 
xxx

TERRIFIED

Bonjour, 

In this blog I want to talk about another emotion that we may experience. The emotion of feeling terrified or scared. 

I've previously written a blog about fear but feeling terrified expresses extreme fear. 

When you're  terrified you can be scared stiff, scared out of your wits, scared to death, very frightened, petrified and alarmed. 

The root word is Latin, terrificare, which means "to frighten."

With a chronic illness like M.E. some of the symptoms can be terrifying. This may include constant extreme pain, paralysis, seizures, unable to breathe, pains in the chest, extreme dizziness, unable to think, to speak or loss of memory.      

We may become terrified that we will end up all alone, with no friends or family to help and support us, abandoned by the medical profession, refused care in our home and what will happen as we become older. 

We may become terrified that we will lose our jobs, be refused benefits, lose our home and security. 

And above all we may be terrified that we may never leave our bed, that we will never get better and only become worse.  

  

Terrified by symptoms

That people can`t see

Who think that I`m faking

And don`t believe me

Terrified when I breathe

By pains in my chest

I feel like I`m dying

Must lay down to rest

Terrified I might fall

With this dizziness

The loss of balance

And some light-headedness

Terrified that I will

Remain paralysed

In my arms or legs

Like I am petrified

Terrified when I can`t

Think or concentrate

I forget so much

Which I also hate

Terrified I`ll be left

Totally alone

No family or friends

To cope on my own

Terrified I may hear

That my benefit

Is going to be stopped

And my life with it 

Terrified I`ll be told

A job I must find

That I`m not really ill

It`s all in my mind

Terrified that I may

Lose my house and home

I`ll have nowhere to live

Lose all that I own

Terrified that I will

Never leave my bed

My life is at an end

And I`ll soon be dead

BUT we can't think like that all the time. I know it's far from easy but we must find strategies to cope with these feelings. 

I'll make a few suggestions and maybe you can add to them. 

1. talk about and share how you feel with others
2. write down how you feel
3. try to concentrate on the present
4. try not to let the fear overwhelm you and take control 
5. take one day at a time
6. the future has not yet happened
7. try some breathing exercises or mediation 

I don't have all the answers but I hope this helps. 

What terrifies you and how do you deal with it? 

I welcome your thoughts. 

Until the next time and another emotion. 

A  bientôt

From the French Femme 

xxx