Quick update post

Had a very busy and emotional day yesterday so really feeling it today.  We put my Mama’s (grandma’s) ashes in her final resting place with my Papa (grandad) on what would have been their 75th wedding anniversary.  Sad and emotional for us all, but they are together now and will be happy.  My Uncle read

Death is nothing at all. 
I have only slipped away to the next room. 
I am I and you are you. 
Whatever we were to each other, 
That, we still are. 

Call me by my old familiar name. 
Speak to me in the easy way 
which you always used. 
Put no difference into your tone. 
Wear no forced air of solemnity or sorrow. 

Laugh as we always laughed 
at the little jokes we enjoyed together. 
Play, smile, think of me. Pray for me. 
Let my name be ever the household word 
that it always was. 
Let it be spoken without effect. 
Without the trace of a shadow on it. 

Life means all that it ever meant. 
It is the same that it ever was. 
There is absolute unbroken continuity. 
Why should I be out of mind 
because I am out of sight? 

I am but waiting for you. 
For an interval. 
Somewhere. Very near. 
Just around the corner. 

All is well. 

This must be particularly difficult for him as his own son died aged 37 three years ago.  Thank you for the reading Uncle Peter and for your strength, I know it can’t be easy.  We take comfort in the fact that Mama, Papa and Simon are now all together.  None of us really knows what happens after death, but I think we have to believe it is a happier place and our loved one are at peace and together.

I was able to give my Auntie and Uncle a button picture that I had made for them

I also gave them and my parents Emily’s latest school photo, which they all liked and had a good laugh at, it is a typical Emily picture!
We bought some yellow rose trees to plant in my Mama’s memory, the one in my garden is flowering again 
I have bought a couple of books for my Kindle this week about ME/CFS

From ME to you with Love
This collection of brave, honest, moving and inspirational letters are the voices of those who hold on to hope every single day that an effective treatment or cure will be found; sufferers of all ages and severities who are determined to be taken seriously by the world and make the very best of their restricted lives. All too often, their hardest fight is against the attitudes of so many who think that this neurological illness is ‘just over-tiredness’ or ‘all in the mind’. These letters voice their wishes for better understanding and treatment of ME to friends, family, the professionals involved in their care and the general public. The profits from the sale of this book will go to Invest in ME, a UK charity raising awareness of ME and funds for biomedical research. Find ‘From ME to You, With Love’ on Facebook” 

Tickle ME
“At 23 I was diagnosed with Myalgic Encephalomyelitis. I went from being a busy, social and active young lady to bedbound. Three years into this illness i have learnt a lot, and the one thing that keeps me going is staying positive. 

I am sure any of you who have this condition can relate to brain fog moments… I think if we didn’t laugh we would have to cry! I have chosen to laugh, and I want to share with you all of my funniest brain fog moments. 

After all, laughter is the best medicine! 

25% of all royalties from this publication will be donated to Invest In ME, an Independent charity campaigning for bio-medical research into the illness. 

I hope this book warms you inside, and I think it’s pretty much guaranteed you will be able to relate to it!” 

Also the print version of 

Can I tell you about ME/ Chronic Fatigue
“Meet Mollie – a woman with an illness called ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome), and her family, Mike, Ellie and Eric. Mollie and her family help readers to understand what ME/CFS is, what it is like to have it and how it can affect their family life. Mollie can’t always do things that other mums do because of her illness, which can sometimes be frustrating, but they share strategies that help them all to cope. The family also explain how ME/CFS can affect different people in different ways. This illustrated book is an ideal introduction to this often misunderstood condition. It shows family, friends and anyone who knows someone with the condition how they can support someone with ME/CFS, and their family.”

These have been added to my ever growing pile of things to read and inwardly digest.  From ME to you and Can I tell you are meant to be read by family and friends to improve understanding, but its difficult to get people interested, they either think they know what they need to know or are not interested in finding out more, but hopefully reading them myself might give me some coping strategies.

Along with these have have printed out a piece about gratitude from Psychology Today to try and get me back on the thinking positive road and Strong Willed Children a positive article on having strong willed children.  Its going to take me a long time to get through them all.

I really have to give in now and get some rest I am so tired and in pain, dizzy and brain fogged.  I pushed myself too much yesterday so I am paying the price today, but sometimes it has to be done.

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