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Welcome to Cream Crackered Blog: a health and lifestyle blog about life as a 30 something with a chronic illness. I started this blog just over a year ago when my life was turned on its head by a diagnosis of an incurable, long term neurological illness called M.E. After my diagnosis I was shocked to learn of how much stigma the disease is shrouded in, and the lack of support available to sufferers, so I started this blog with the aim of raising awareness of the disease and hopefully offering advice and support to fellow sufferers on how to build a new life alongside chronic illness. 


It has since grown into a wonderful, supportive, inclusive community on Instagram which I would love for you to join. You can find the links to all my social media accounts at the top of the page.

 
 
  • Lorna McFindlow

A Reintroduction to Me and My M.E

Hello pals. Since there are some new faces here, I wanted to do a little reintroduction to me, but mostly to my M.E.


So here’s a few things to know about me: I’m Lorna, I’m 34 years old. I live in North West England with my husband and my two cats. I love board games, pizza, peanut butter and true crime documentaries. Sometimes I look like this:

A close up selfie of Lorna, a white woman with brown hair tied up in a top knot. She has a heavy fringe. She is wearing make up, a polka dot dress, lightening bolt earrings and is smiling directly at the camera.

... but most of the time I look like this:

Another image of Lorna lying on the couch. She wears an eye mask and an electric heat pad around her shoulders. She is visibly in pain.

That’s because for around 7 years now (4 years diagnosed) I have been living with M.E (Myalgic Encephalomyelitis). I also have endometriosis, fibromyalgia, hemiplegic migraines and POTS (Postural Orthostatic Tachycardia Syndrome).



Today though, I just want to focus on M.E for a minute. For those who may not know what M.E is, here are some infographics that explain the symptoms:


A list of M.E symptoms taken from the ME Action Network website, which you can read here: https://www.meaction.net/learn/what-is-me/

I always try to be as honest and clear in how I represent my illness because it’s one that is still highly stigmatised and disbelieved. I know that many people will see a photo of me smiling, my hair and make up done, and presume I can’t possibly be as sick as I claim to be. Which is why I always try to share all sides of this illness as honestly and openly as I can. Warts and all.


Getting sick with M.E meant that I had to give up my career as a teacher and my life in Italy. I went from teaching, running, hiking, cycling and travelling to being housebound about 80% of the time, unable to work and needing assistance with day to day tasks such as bathing and cooking. My M.E symptoms fluctuate and some days I might sit at the more severe end of the spectrum, where I become bed-bound and unable to tolerate light or sound. However, these relapses are usually temporary and, at my baseline, I can at least walk around my house, do a bit of writing and advocacy work online and play with my cats. I can also occasionally leave my house in my wheelchair to socialise for short periods.


Something I’m very conscious of is that the faces and stories that dominate the online spaces are those of people with more mild or moderate forms of M.E. People who can still, on some level, “function” (in line with the capitalist ideas of productivity). To be clear, I believe that to call any form of this illness “mild” is inaccurate and does an injustice to the suffering and struggles of those living with it.


In raising this issue, I am absolutely not aiming to discredit the work that these brilliant people do - their struggles are valid and their work is important. But ultimately, mild or even moderate sufferers like myself can not and should not be held up as sole representatives of an entire patient group. To do so gives a false impression to the non-sick/disabled public on what this disease is, and how it affects people in its most severe form.


So today I wanted to talk a little about Severe and Very Severe M.E, and what that looks like. I’m including a graphic to help give a clearer picture of hot the disease affects people at this more severe end of the spectrum:


Image credit to Chantelle at Chronically Rising, who you can follow here: https://instagram.com/chronicallyrising?utm_medium=copy_link

Most people with Severe or Very Severe M.E are entirely bed-bound and unable to walk. Most require constant care, many are unable to eat or digest solid food. Most are unable to tolerate light or sound, meaning they have to live their lives in the dark, shut off from all stimulation. Even the smallest exertion can have a severe effect on their health, often causing tremors, seizures and/or paralysis. They are some of the sickest people I know, yet they are amongst the most ignored and maligned. People have died of it. Sophia Mirza, Merryn Crofts, Jennifer Chittick. Many more have died either from related complications or by suicide, because life became unbearable for them. These people live their lives in darkness and silence, and most doctors either don’t know how to help or don’t care to; assuming symptoms are psychological or self-inflicted in some way.


Because of the nature of this disease, this patient group are unable to advocate for themselves and that’s why I feel that those of us who suffer less severely have a responsibility to speak up for them and to accurately represent what this disease can do.

Over on my Instagram page I’ve tagged a few people whose M.E is (to my knowledge) severe, or at least more severe than mine, and who write or post about their illness. I’m sure I’ve missed lots of brilliant people, for I am but one brain fogged girl, so I would love for any severe sufferers who may be following me to share their experiences, if you’re able, or tag accounts you think we should be amplifying.


I’m also looking for someone with Severe M.E to do a guest post on my blog. I appreciate that writing may be inaccessible for many of you due to brain fog and other symptoms, but if you’re able to maybe record it as voice notes I could transcribe them for you. Please get in touch if this is something you’d be interested in.


Overall, I just want those of you following me to know that my experience is not representative of the entire M.E patient group. M.E is a spectrum disease, and even in my moderate situation on the spectrum my life has been turned upside down and forever changed by this disease. I have lost so much and my day to day life is difficult and painful. That’s not to say there also isn’t joy in my days, but try to consider that if this is what a “moderate” form of this disease can do - imagine what life is like for Severe and Very Severe patients.


Please take this disease seriously, it is so much more than it appears and patients deserve so much better than to be ignored, neglected and maligned by doctors and loved ones.


I’ve included some resources for people to expand their understanding of M.E if they wish. Please feel free to suggest more resources in the comments or message me directly with links.

Documentaries:   Unrest (2017) - Netflix, Google Play, iTunes Store • Voices From The Shadows (2014) - Vimeo  Books:  • A Girl Behind Dark Glasses’ and ‘A Girl In One Room’ by Jessica Taylor-Bearman • ‘The Puzzle Solver: A Scientist’s Desperate Quest to Cure The Illness That Stole His Son’ by Ronald W. Davies

As always, thinking of Severe sufferers and holding space for you in my heart. Those of us who are able will keep advocating and fighting for a better future for all of us.


💙

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