You Don’t Understand the Energy It Takes for Me to Rest

Monday 18 April 2022

Spring has finally sprung; brighter days are beginning and I’ve sent the sun a new hat by special delivery with hopes it will put its hat on and come out for a little while. April is M.E. Support’s 21st Anniversary and next month is the 30th Anniversary of M.E. Awareness Day, so, with that in mind, I thought I would try something a bit different to celebrate the milestones.

I want to be able to give an all-inclusive experience of this illness and I endeavour to make sure I account for all levels and stages. I want to give a clear, concise and honest view always of this illness and support our community the best I can. I know in my life I’m pushing more than I should most days, it’s not the poster for how to cope with M.E. or how it affects us and I know I’m further forward in my maintenance of this illness than many. I also know so many others are even worse than I have ever been.

This illness has broken me at times, especially in the early years, so much so that I thought about ending this life to free my husband of the burden, and it has brought me to my knees many times since. In the early years I was completely bedbound (that was also couchbound when my husband lifted me to it). He would have to help me sit up to drink, cut my food so I could take it piece by piece, help me to and from the bathroom and watch the woman he knew me to be slowly start fading away each day. I saw no hope, I didn’t want to live but I didn’t want to die, there was no way out and I felt alone in a very dark world. Even with all this being said, I’m one of the lucky ones with this illness.

Like many of you here I’m sure, I have made some fantastic friends through the M.E. community, most of whom I’ve never met, but they have been there for me in the darkest of days and I feel very privileged to have them in my life. One of those friends is an amazing lady called Hannah Gimblett, who is one of the many out there who are severely affected by this debilitating illness. Hannah is passionate about sharing her story and like myself, is committed to setting the record straight and spreading awareness. She has a passion for journalism and photography and has very graciously agreed to collaborate with me for this post.

Hello Hannah, I’m really appreciative of having your time, energy and viewpoint for this month’s blog.

I know you’ve had a hard journey so far on the road of M.E.; could you tell us how it began for you?

It began at the age of 13, after struggling with Juvenile Polyarticular Arthritis for seven years prior to that; it took a bad chest infection and the flu to set off something in my immune system, leading to Severe Myalgic Encephalomyelitis.
I was instantly hit extremely badly by the condition, and it has only deteriorated over time.

M.E. in general has a huge stigma still but more so if you’re a young person who suffers from it. How have you personally found people’s reactions towards you?

I’ve had various shocking experiences regarding people’s reactions to the diagnosis of M.E. These range from hateful comments online to a long list of awful treatment from the medical profession, which, of course, has had an impact and led me to be very cynical regarding new doctors that I’m introduced to. It’s difficult to not be disheartened by the stigma that still surrounds this debilitating condition.

There are a lot of suggested treatments by doctors and medical professionals to try and ease the symptoms of M.E. What treatments and alternative therapies have you tried and how did you find them?

After 15 years of struggling with this condition, there unfortunately isn’t a treatment or therapy that has benefitted my physical health, so far.
Although, regarding my emotional wellbeing, art therapy – whether that’s in the form of music, crafts, or photography – is certainly something that has stayed with me.

As a severe sufferer of M.E., you are mainly bedbound; what does a day in your shoes look like?

With me being completely bedbound since June 2019, a day in my shoes can sound quite monotonous to most. It is usually structured by medication, sleep and meals; other than that it all depends on my pain levels on the particular day.
On a good day, I’m able to pick up my camera, even if that’s to simply practise composition or continue with a photographic chronic illness project called ‘Process of time; Same view, different perspective’. Preferably some botanical photography from bed if I’m not too exhausted.
Otherwise, it consists of a lot of music, which helps as a good distraction for my pain. The other highlight in my day, (still dependent on my energy levels/my overall chronic pain) would be if I’m able to watch a good movie with my mum.

This post is called “You Don’t Understand the Energy It Takes for Me to Rest”, as I really do feel that right now the M.E. community is being misrepresented and misunderstood, even within our community. What do you wish people would understand about M.E?

I truly wish people would understand how painful and debilitating a condition M.E. actually is, especially severe M.E. It has tipped my life upside down and thrown such a lot of curveballs with my health; from developing contracture in my feet, to bad fluid retention, the list goes on of co-morbidities that I now have due to this illness.

Next month is the 30th Anniversary of M.E. Awareness Day and as far as we’ve come in the last 30 years, we’ve still got strides to make. What would you like to see happen for the M.E. community in the next few years?

It would be amazing to see much more funding being placed into the correct research for M.E.; in my opinion, this condition and the stigma surrounding it has prevented this from happening.
Leading on from that, if there could be a deeper understanding from both medical professionals and people in general as to how unbelievably debilitating and life-changing this condition is, that would be a welcome shift.

Have you found many organisations, charities or other support helpful while on this difficult road?

From my personal experience and my journey so far, I haven’t found any organisations particularly helpful; I feel there is even less input  when transferring to the adult services.
Of course, M.E. Support is a fantastic resource for all who are affected by this illness. But the main thing I have found helpful, even during hospital stays, is the individuals who encourage/suggest activities or passions for me to pursue, especially in my darkest times; this been incredibly invaluable.

What advice would you give anyone who has just been diagnosed?

To keep going, even when it gets extremely difficult. And don’t let the doctors make you doubt anything about yourself – you know your own body more than any doctor or medical professional!
Also, please don’t keep everything bottled up; from experience, it absolutely is a downward spiral of negativity. It can be unbelievably tough, especially with severe M.E, so lean on your loved ones and never feel like you’re on this journey alone.
Alongside the above advice, I would try (on the days that you feel up to it) to make the time for a small thing in your day that brings you joy or a sense of fulfilment; whether that be music, art, writing, whatever it may be, if it distracts you for even a moment, it’s worth it.

I have mentioned in previous blog posts about supporting our mental health and having a ‘Mental Health Toolbox’ to rely on. Meditation, nature, music, books, dogs and writing are all in mine. What helps you through the darkest days?

In those darkest days, to still hold on to a sense of creativity is invaluable.
Pressing play on my favourite album is incredibly healing, music truly does feed the soul.
To hold a camera in my hands, even for ten minutes, is something I also find very meditative.
The most important of the three is my loved ones, most especially my mum, she’s my source of strength, inspiration, and comfort. Without such a wonderful mum, I truly don’t know where I would be.

You, as you have said, have a passion and, in my opinion, a great talent for photography. I share this affinity as I’m a really sentimental person and photography allows me to capture memories and my view of our world. What does photography mean to you?

Photography has been a constant in my life from a very young age and for that I’m extremely thankful. To have this passion and source of creativity that I’ve had to cling on to, despite my life changing so dramatically, is a true blessing.
Of course, currently, my photography isn’t as varied as it used to be, when I was able to access a wheelchair; nonetheless, I continue to pursue this glorious art form as much as I can. I look forward to expanding my photography with various projects and ways to keep me occupied with a positive focus in the future.

You’ve done so much despite your debilitating health, creating your own magazine, and having photography featured in various publications. What are you hoping for next on your creative path?

Thank you. Despite everything I’m continuing to go through, there is such an awful lot that I would love to achieve.
It would be wonderful to continue to contribute to publications, both with my photography and journalism; I very much enjoy combining the two to create something that brings a spark of creativity.
I have a project involving my love for botanical photography coming up over the summer months, that I’ll thankfully still be able to capture and be involved in, despite my situation.
Overall, it’s a true dream to be well enough to pursue my photography in such a way that continues to bring me joy and nurtures my creative passion.

You are a really inspiring, strong and kind-hearted person and it’s a pleasure to be connected to you and get to know you better. I know this will have been such a huge drain on your energy. Thank you so much again for joining me for this post.
I’d like to give you the opportunity to use your voice here and say anything you feel is important that we may not have covered.

I would like to say a big thank you for asking me in the first place, especially as M.E. Support is a brilliant source of information for those of us who struggle with this awful illness.
And a massive thank you to those of you who took the time to read my interview.
Keep going everyone, no matter how tough it gets in your journey; there are always things to distract yourself with and passions close to you to pursue.

If you would like to see Hannah’s beautiful photography or follow her creative outlets, please visit Hannah Gimblett Photography or join her Lil’ Hannah Facebook group.

I would like to finish this month’s post by sending my congratulations and appreciation to Louise for her tireless efforts over the last 21 years for the M.E. community. Louise has provided the community with support and information solely from her own pocket and relies on donations. As a treat for hitting 21 years, it would be much appreciated if you are able, to send a Donation or make a purchase from the Wish List to help her continue giving support and to allow her to put plans in place for the future of M.E. Support.

Thank you for taking the time to read this month’s blog post for M.E. Support. Please do like and share this post and comment about your experience on the Facebook Page.

May’s edition of the blog will bring you several posts in relation to advancements in biomedical research and steps forward that have been taken in the last 30 years of M.E. Awareness Day.


rose_hannah_gimblettA Single Rose © Hannah Gimblett