REST AND RELAPSES

Bonjour,

I'm sorry that I haven't been around so much but I've been in a relapse. 
In fact many of my friends seem to be in the same place at the moment. 
I wonder what's going on? 

I had been doing so well but maybe I just pushed myself a bit too far. 

So what is a relapse in M.E. ? 

A relapse is more serious and long term than post-exertional malaise which is an essential feature of M.E. 

Postexertional neuroimmune exhaustion (PENE) is compulsory as a criteria for Myalgic Encephalomyelitis (M.E.) in the latest International Consensus Criteria 

For me a relapse is a deterioration in my level of health that lasts more than a few days. So far this has lasted four weeks!

The late Dr Elizabeth G. Dowsett said `It is an unexpected deterioration in the condition of a sick person after partial recovery`

But what causes a relapse? 

 The late Dr Elizabeth G. Dowsett said ` The commonest causes of such a reverse in ME appear to be mental and physical over-exertion and stress or secondary illness (usually an infection, possibly a minor one)before recovery from the first`

A relapse can be caused by 

• overactivity
• poor sleep
• a secondary illness
• stress
• stressful relationships
• special events
• sensory overload

Of course the next question for me and anyone else in a relapse is how can we recover from a relapse? 

Dr Elizabeth G. Dowsett said

`Recovery from ME depends, as we shall see, upon a very delicate balance between infection and immunity, so it is as well to be informed of other factors which maybe detrimental to progress including:any upset to the immune system(commonly immunisations and immuno-suppressive drugs such as steroids)hormonal disturbance (such as puberty, pregnancy, childbirth,contraceptive and other hormone therapy unless strictly monitored)exposure to toxic chemicals and drugs (including those in recreational use such as alcohol and tobacco)Other deleterious factors to be avoided if possible, comprise surgical injuries (especially to the head and neck), malnutrition and sudden climatic change.We do not know why relapses can be cyclical (at weekly, monthly or longer intervals) despite the patients’ best efforts to avoid all the above.` 

How can we manage a relapse? 

Dr Elizabeth G. Dowsett said 

Immediately seek extra support to remove all stresses (physical,mental, emotional, intellectual)

Be patient and listen carefully to the signals given by your own body so that you can aim to remain in charge

Maintain good nutrition (by means of supplementary feeds, on prescription, if necessary)

Seek to delegate all tasks except those you love to do or which are absolutely essential, till recovery

Do not ascribe all new symptomsto the relapse; seek a medical opinion if possible as you may have another potentially treatable condition

Do not despair; in surviving this relapse, you will gain confidence about self-management and quicker recovery in the future.

REST is very important and that's total rest. 

Rest

Rest

Rest

And hope to get better

That`s my advice to you

You know it makes sense as

It`s the best thing to do

Rest

Rest

Rest

And hope to feel better

I know it`s hard to do

But it`s the only thing

That will benefit you

Rest

Rest

Rest

Listen to what I say

Your body needs to heal

And have a proper rest

As exhausted you feel 

Rest

Rest

Rest

Let your mind become still

Repose your tired brain

Clear away all your thoughts

As they are only a drain

Rest

Rest

Rest

Stop! It's now time to rest

This is the remedy

When you are in relapse

Towards recovery!

  

Of course that means different things to different people depending on the level illness and the severity of the relapse. 

So I have been doing a lot of resting and very slowly making a way to a recovery. But it's hard and so easy to overdo things again. 

Alongside lots of rest the other strategy is to adopt good pacing 

Hopefully I'll learn something from this latest relapse! 

Do you have any other tips advice on how to deal with a relapse? 

Would love to hear from you. 

A bientot 

Love from the French Femme

xxx

P.S Don't cats just know how to rest and relax!! 

CHILLI ME CHALLENGE

Bonjour

I have been inspired by so many people who have been taking up the Chilli ME Challenge and especially by the video posted today by Mama Chill

It has in turn inspired me to write a poem and encourage others to do the same. 

The chilli is hot

The challenge is now

It's all for M.E.

But do you know how? 

Make a video

And eat a chilli

No matter how hot

It's all for M.E. 

Have your milk ready

To help with the heat

Your mouth is on fire

As it's no mean feat!

Share your video

For many to see

Let's spread the message

It's all for M.E.  

So why are so many taking up this challenge? 

Because we need to do all we can to bring attention to the plight and suffering of so many with M.E. which can be a lifelong illness.

We need to raise awareness and biomedical research funds

One way we can do this is by making hilarious chilli-pepper-eating videos.

Are you ready to take up the CHILLI ME CHALLENGE? 

A bientot 
From the French Femme xxx

I VALUE MY LIFE

Bonjour

So here we are in the middle of Summer and many people are going off on holiday. For people with a chronic and long term illness, like M.E., it's either impossible or extremely difficult. 

Yet I recently planned and took a holiday by the sea. It was hard but I coped with all the demands thrown my way. 

In a minute I'll share with you what I learnt and offer some advice from my experiences.  

But first I'll tell you why I took a holiday. Apart from the obvious reasons and why everyone needs a holiday, I feel that I must go on living despite having M.E. 

I've been suffering for some 12 years now, with relapses and good periods. I have gone through a grieving process for my past life, I've done tests after tests, I've tried lots of different approaches to see if anything improves my level of health and the quality of my life. I've learnt as much as I can about this illness. Now I have to accept that this is my life and continue living my life as best as I can within the confines of my illness.  

Yet deep inside I still feel that I am the same person and value my life all the same

Value

Now I value my life

Though nothing is the same

So much has been stolen 

Yet here I still remain

How I value myself

This person deep inside

Although my life has changed 

The real me is alive

Did I value my life 

Before illness arrived?

I thought I was dying 

But somehow I survived

Now I value my life

It's so precious to me

And I go on living

Despite having M.E.

So how to go on living with M.E.?

I'm not as serious disabled as some but with careful management I have found that I can travel and can go on holiday. I was recently inspired by this blog  

Of course it depends if you have someone to help with travelling and planning a holiday. 

I don't have either so had to plan well in advance. 

Here are my few tips that might help you

1) Look carefully at where you want to stay. 

2) How easy is it to reach by public transport?

3) Do plenty of research beforehand.
4) Make lists and lists of what you need.
5) Pack slowly and don't leave it to the last minute
6) Make a note of all your travel plans i.e. times of buses, trains etc.
7) Consider your limits.How far and how long can you travel in one day?
8) Maybe, like me, half a day is more than enough to travel on public transport
9) Register as a disabled passenger and ask for help at all times.
10) I have a priority card which also comes in very handy.
11) Take with you plenty of fluids and dry snacks like nuts as well have any medications easily at hand. 
12) Look at all your alternatives in case things go wrong e.g. taxi numbers.
13) If you are travelling alone tell others about your plans and have their contact details in case you need help. 
14) Keep with you all information about your illness and any medications that you need. 
15) Rest well before you travel and rest when you get to your destination and of course rest and recover when you return.
16) Above all pace, rest, relax and enjoy yourself.    

Now I know that I can travel and go on holiday. 

My life hasn't finished - yet. 

Of course it has changed and I get some funny looks when I ask for help as a disabled passenger. I suppose they assume that everyone who is disabled needs to use a wheelchair. Still I don't care because I have proof of my disability and I am not afraid to ask for help. 

I hope my blog will help you and inspire you to do the same. 

Bonnes vacances et bon voyage!!

A bientot from the French Femme
xxx       
  

   

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FEELING GUILTY

Bonjour

Comment ca va? 

I want to do a series of blogs about how are relationships are affected by being ill with M.E.

We change with this illness as we can longer function the same. 
So inevitably our relationships and interactions with others change. 

This first blog is about the changing relationship between partners, husbands and wives. Often there are breakdowns and break-ups. 

Some are fortunate to have all help and support that they need. 

Some become abused and isolated. 

Sometimes the partners are unable to cope with this illness and all the complications that arise.  

It must be hard for a loved one to see how we suffer, change and no longer well enough to share the same things.  

So many of us push ourselves beyond our limits because we don't want to let our partners down. There are so many expectations and demands on us.  
We start to feel guilty 

Feeling Guilty

I’m feeling so guilty

Because I can’t help you

But I don’t have a choice

There’s so little I can do

I’m feeling so guilty

This illness is to blame

It’s not really my fault

I’m no longer the same

I’m feeling so guilty

As I depend on you

So please don’t resent me

There’s so much I can’t do

I’m feeling so guilty

As I rely on you

I feel like a failure

When there’s nothing I do

I’m feeling so guilty

Since I really need you

And I’m letting you down

But don’t know what to do

I’m feeling so guilty

I can’t cope without you

But I appreciate

Everything you do

Do you feel guilty? 

I think in the past I have often pushed myself so as to be with my husband and do things with him or for him. 

The problem is that if you don't say how you feel you end up making yourself worse.

I think you need to be honest and open about how you feel. 

Tell your partner how you appreciate all that he or she does to help and support you. I think communication is important. 

Still I guess it's hard to avoid feeling guilty.

Well on that thought I leave you until the next blog about our relationships

A bientot
From the French Femme 
xxx

 
 

M.E. AWARENESS ALL YEAR ROUND

Bonjour

So what have you done in May to raise awareness? 
I took a bit of a back seat this year, for personal reasons. 
However I know there has been a lot of great awareness raising and initiatives during May. 

I started the month with a blog and I'm going to end it with a blog. 
I just want to say that raising awareness needs to continue all year round and not just in May.
But we need to keep fighting to gain the respect, understanding and treatment that we all need and deserve. 

On a personal note I have recently been made fully aware that, even when you have better days, think you have turned a corner and are able to do more it doesn't mean that you are on the road to recovery. 
M.E. is a remitting and relapsing illness. 
So don't be fooled like me and think you have beaten it. 
It has a way to surprise you and come back with a vengeance. 
It's waiting in the wings just to leap in and re-assume it's role in your life. 

So treat it with respect. Don't do too much when you start to feel better. I know it's easier said than done. We all fall into the same trap at times. Sometimes we have no choice as we have to deal with 'life' and all that comes along. 
For me the two strategies that help are rest and pacing. 

The problem is that it can be a life long illness for some and it's so hard to manage. 
I do believe that there is some hope on the horizon, especially for those young or newly diagnosed. I try to remain optimistic but of course there are days when that's so hard. 

OPTIMISTIC

One day

Some one

Will find

A cure

And I 

Will be 

Healthy 

Once more

So hard

To be 

As years 

Go past

To hope 

That I'll 

Be well 

At last!

  

In the meantime I will continue to raise awareness and understanding through my poetry. I am well on my way to another book of poems about M.E. 

So watch this space! 

I hope you will join me in the continuation to raise awareness and understanding. Every little helps. Why not share this picture so that others can have some idea of what it feels like to have M.E...... 

   

And of course you can share my poems and my blogs. 

Well that's about all for now. 

A bientot

From the French Femme

xxx 

WHAT ARE YOU GOING TO DO IN MAY?

Bonjour

Today is May Day. Here in France it’s called La Fête du Travail or La Fêtedu Muguet. It’s a public holiday. The French greet each other with a sprig or small bouquet of Muguet (Lily of the Valley), a flower that is considered a lucky charm. The tradition dates back to the beginning of the century.

 

Today is also the first day of a month of International awareness for the spectrum of illnesses called Chronic Immunological and Neurological Diseases which includes M.E.

May 12^th is International Awareness Day. You can read more about it and my poem dedicated to that day in my previous blog.

In previous years I have done a lot of awareness raising for The Big Sleep for M.E.

This sort of awareness raising takes its toll on those like myself and others who already face the challenge of living with a long term chronic illness like M.E.

So this year I am taking a step back. I also have personal reasons which need my attention. So sadly I’m unable to contribute at the same level.

Yet I encourage others to take part in awareness raising, even in some small way. Every little effort helps.

Please feel free to use and share any of my poems or blogs which you can find here and on my face book page.

Some of my poems have been wonderfully illustrated by fellow sufferers and convey very powerful messages about what’s it like to live with M.E.

You can also buy my book and share with others to help raise awareness and understanding.

It's available worldwide but here are some of the links on Amazon

In paperback from Amazon UK

Kindle version from Amazon UK

On Amazon Com 

All money I receive from the sales of my book in the month of May I will donate to Invest in ME

So what are you going to do? 

I hope you have a good month of May.

In the french tradition I wish you Bonne Chance

A bientot

From the French Femme

xxxx

 

 

 

 

 

 

HOT AND COLD

Bonjour

Well at last we have reached Spring and here today in France it feels like we have skipped Spring and gone straight into Summer! I have difficulties in adjusting to temperature changes and the seasons, especially if sudden and dramatic. Do you?

Sudden changes in temperature are known to bring on a relapse of ME in some cases. I once had a major relapse when there was a sudden and huge change in the weather. In a matter of days it turned from Winter into Summer. My body just couldn't adjust that quickly and I suffered badly for many months afterwards. 


Loss of thermostatic stability is one of the symptoms of M.E. as outlined in both the Canadian Consensus Criteria and the more recent International Consensus Criteria 

'Loss of thermostatic stability - subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold'  

 

When I first became ill I felt cold all the time, even in the middle of Summer, and often had cold fingers or toes. At the time I had no idea what was going on. I still have occasions when I become cold all over and it takes ages to warm up. I've been known to go to bed with wearing pyjamas, dressing gown, thick duvet and covers along with a hot water bottle and still feeling cold! Then all of a sudden it's as if someone has flicked on a switch and I become hot all over - in fact just the reverse, too hot. The body is unable to regulate temperature and changes.

Then, to make matters worse, I entered into the menopause and all the night sweats started. I had a period of years when I woke up many nights drowned in sweat even though it was cold in the bedroom. I would start off covered up, wake up hot, throw off all the covers and then within minutes freezing cold again!!!

Bizarrely I even have times when one part of my body feels hot and the other cold. That's so difficult to manage. 

I fare better in a warmer dry climate and don't do very well in the damp and cold. I know some people are totally unable to tolerate either hot or cold. Which do you prefer?
 So how do you cope with this aspect of M.E.?  I have learnt to always have many layers of clothing which I can add or take off. I try to avoid the extreme climate changes. I try to be more aware of what will make me feel worse and avoid situations that will only exacerbate these symptoms. If possible change your location and see if that helps.  

This is the poem I wrote about being hot and cold 

Hot and Cold

My thermostat

Is not working

Out of control

Either too hot

Or very cold!

How can I be

Both hot and cold?

Body confused

Instead chaos

Has taken hold!

Don`t understand

Why I feel hot

When it is cold

Why I feel cold

When it is hot!

Temperature

Always changing

Never the same

One minute cold

And then BOILING!

A sudden sweat

Comes over me

Take off layers

But then I feel

Cold instantly!

Hard to control

And keep stable

What must I do

To make myself

Comfortable?

 

Of course the benefit from sunshine is to capture some vitamin D. So I think I'll just take a walk out in the sunshine.....................

 

A bientot

From the French Femme

xxx