Enchanted Sleep

by Sarah Allegra

 


The Fog Rolls In © Sarah Allegra

 
 

My dad likes to tell a story about me from when I was two years old. He was very slowly “chasing” me around the coffee table, making silly monster noises while I giggled and shrieked and ran (or more accurately waddled) away. After a few laps around the table, I seemed to figure out I wasn't making any progress in my efforts to escape the “monster” behind me. Seeing that I couldn't run away, I turned around, ran toward my dad, wrapped my arms around his leg and bit his knee. Obviously, as a two-year-old, this didn't actually hurt my father. But it's a story he likes to tell to illustrate who I am and what I'm like.

Having Myalgic Encephalomyelitis is a lot like endlessly running around a coffee table, minus the giggling and fun. No matter how fast you run, the M.E. will be right there behind you. It will always be bigger, faster and more inexhaustible than you. You cannot escape it. And it has no knee to bite.

 


The Blue Ribbon © Sarah Allegra

 

I was diagnosed a little over six years ago, though I'd had symptoms for much longer, dating back into my late teens. It sent its first tendrils into my body so slowly and quietly that it took a long time for me to realize something was truly physically wrong with me. Then one day, those tendrils exploded into choking vines. And I have been trying to hack them off ever since.

Most of you reading this will be familiar with the ways in which M.E. steals from your life, one piece at a time. The constant exhaustion. The lack of stamina. The hyper-sensitivity to all stimuli. The way it grabs hold of your brain and squeezes until there's almost nothing left of you. The loss of relationships, the loss of freedom, the loss of activities that used to be the driving force in your life. It is a ruthless evil which won't be satisfied until it has taken every part of your body, mind and soul.

 

The Spoon Theory © Sarah Allegra

 

As of now, there is little I can do to fight it. But I will not surrender to it either. Modify my life, yes. Try and manage my symptoms as best I can. Those are skills I have developed to survive this disease and keep going. And creativity in my attack methods is key. 

I have always been artistic; painting and illustration were my main focus for most of my life. But eventually it became too painful to wield a pen or paintbrush. At the time this came to a head, I was dating a photographer (now my husband). I sat him down one day and made him explain the basics of using a camera to me. Suddenly, I could create images again. And it was a beautiful thing.

 

Three Good Days © Sarah Allegra

 

I started into photography focusing mostly on venting the emotions I was going through during my early stages of testing and diagnosis. It was a very frustrating, upsetting time, but I could vent those feelings through the images I created. Photography became more and more important in my life. Not just for the catharsis it offered me, but for the ability to create which it put back in my hands.

Early on, I discovered that my images could convey emotions and concepts in a much more concise and visceral way than my words. So, I began working on a series visually portraying what living with M.E. is like. I wanted healthy people to understand. Not for pity or attention. But for awareness. Most people don't even know M.E. exists. And until people know and understand, there can be no effective public outcry for treatments and cures. My series continues to be a small step toward that larger goal of raising awareness. And it is a salve for my soul. It gives me a measure of control. It gives me power against what I cannot fight any other way. It matters.

 

Martyrs To A Name © Sarah Allegra

 

I cannot slay the M.E. Not yet, anyway. I accept my limitations and do my best to work with them or around them. But for the foreseeable future, we will be together...no matter how much I hate that thought.

But I will not go quietly. I have my art. I will keep creating as long as I am physically able to. And though it may be a mostly symbolic defiance – like a bite on the knee from a two-year-old – I will keep fighting.

If you're not offended by artistic nudity, see more of my work at
SarahAllegra.com.

 

Inside Looking Out © Sarah Allegra

 
 

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Most Popular

Top 5 articles for the week of August 6, 2018:

  1. The Symptoms of Myalgic Encephalomyelitis
  2. Care for Someone with Severe Myalgic Encephalomyelitis
  3. M.E. & The Summer Holidays
  4. A Self-Help Guide to Myalgic Encephalomyelitis 
  5. Lyme Disease / Borreliosis & M.E.in the United Kingdom
 
 
 

Trending Topics

Lyme Disease has received a lot of media coverage recently. The subject is covered on M.E. Support in Lyme Disease / Borreliosis & M.E. in the United Kingdom. For additional help and support, please visit Lyme Disease UK or LymeDisease.org (USA).

I am currently receiving a lot of enquiries about Candida. Please take a moment to read Candida & M.E. by Medical Herbalist Jo Dunbar. You are welcome to contact Jo at her clinic for more guidance.

 
 
 

Unrest Review

My brother Stuart and I went to our local screening of Unrest recently, an award-winning documentary film about Myalgic Encephalomyelitis.

Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head”, she turns her camera on herself and her community as she looks for answers and fights for a cure.

Although it was emotionally challenging to watch, we are pleased to share our views on this groundbreaking film with you.

 
 
 

Featured Product

These lovely enamel Pin Badges have been specially cast for M.E. Support.

This plain blue ribbon design is suitable for Myalgic Encephalomyelitis, Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivity. The badges are 25mm long and measure 14mm at the widest point (image not actual size). They have a nickel finish and a secure clutch pin fitting. These subtle badges are perfect for your jacket lapel and can be worn throughout the year.

They are a great investment at just £1.65 each. These badges are individually packaged in protective plastic bags. If your delivery address is outside the UK, please Contact Me for an Airmail quote before placing your order.

 
  
 
 
 

Amazon Wish List

One of the biggest expenses I have with running M.E. Support is the cost of office supplies. I created an Amazon Wish List so that you have the choice of supporting this cause with tangible items as an alternative to making a monetary donation.

Please consider purchasing an item from the list and Amazon will dispatch it to M.E. Support on your behalf. I currently require the following items and would appreciate any help you can provide:

 
 
 
 

How to Help

M.E. Support currently has a number of Volunteer opportunities available.

M.E. Support gratefully receives Donations and welcomes corporate, family or individual Sponsorship.

Would you like to promote a product or service? Reach potential customers with an Advertising package from M.E. Support.

M.E. Support will be launching fundraising packs and media kits in Spring 2018.

News

Page 1 of 3  > >>

13 Aug 2018
M.E. Organisations
31 Jul 2018
M.E. & The Summer Holidays
10 Jul 2018
Latest Metabolites Research
23 Jun 2018
Westminster Hall Debate
5 Jun 2018
Forward-ME Meetings
18 May 2018
Merryn Crofts Inquest Ruling
15 May 2018
Article by Hannah O'Brien
12 May 2018
M.E. Support Competition
8 May 2018
BBC Documentary
28 Apr 2018
The Synergy Trial

 

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Latest News

A selection of news from the Newsletter and Facebook Page.

Page 1 of 3  > >>

13 Aug 2018
M.E. Organisations
31 Jul 2018
M.E. & The Summer Holidays
10 Jul 2018
Latest Metabolites Research
23 Jun 2018
Westminster Hall Debate
5 Jun 2018
Forward-ME Meetings
18 May 2018
Merryn Crofts Inquest Ruling
15 May 2018
Article by Hannah O'Brien
12 May 2018
M.E. Support Competition
8 May 2018
BBC Documentary
28 Apr 2018
The Synergy Trial

Diary Dates

CFS/M.E. Research Collaborative
19-20 September, Bristol

CFS/ME International Conference
26-27 November, Queensland

Int. M.E. Awareness Day
12 May, Global

#MillionsMissing M.E. Protest
12th May, Global

9th Biomedical Research into ME Colloquium
TBA

14th Int. ME Conference
TBA

Severe M.E. Day
8 august, Global

 
 
 

Facebook Page

The M.E. Support Facebook Page is a moderated space on the social networking service.

This is an ideal place to read and comment on the latest news, discuss and seek advice on issues affecting M.E., along with getting to know like-minded people.

Simply log in or sign up for free and click 'Like' to join this growing community.

 
 

 #MESUK

 
 
 

Competitions & Offers

Every year, M.E. Support holds a competition to send someone flowers for International May 12th Awareness Day.

Who would you nominate to receive this surprise gift? Please visit the Competition page for further details.

 
 
 

Hire Me

Through my experiences as an M.E. sufferer and webmaster, I have expanded my knowledge of health related issues, along with gaining skills in multimedia management.

I am currently Available to Hire for the following projects:

  • Reviews and sponsored posts related to Myalgic Encephalomyelitis for M.E. Support.
  • Freelance writing assignments in the area of health.
  • Content creation and content curation for websites/blogs and social media.
  • Website development and social media management.
 
 
 

Bexhill Social Group

Alongside my work here at M.E. Support, I run a Social Group for people living with M.E. and related conditions in Bexhill-on-Sea, East Sussex.

These informal monthly gatherings are a chance to meet other sufferers for friendship and support.

 

de-la-warr-pavilion

 
 
 

Louise's Gallery

Away from M.E. Support I am a keen amateur photographer. I enjoy all photographic subjects,
and I have a passion for capturing light in the natural world.

You can view a selection of my photographs, or purchase prints and greetings cards, in my online portfolio at Louise's Gallery.