Hi I’m Naomi, I’m 31 and I have Severe M.E. It was lovely to receive a message from Alice asking me to write a piece for February’s Smile For M.E.’s monthly feature. I think it’s important that people with M.E.’s voices are heard and it’s great that Smile for M.E. do this.
Smile For M.E. is a charity that means a lot to me in many different ways. I was kindly nominated by a wonderful friend to receive a Smile Parcel back in August last year and it truly brightened my world at a time when I was having a difficult time both with my health and personal life. I wasn’t expecting my parcel so it truly was a surprise to receive. Everything that was chosen to be put in my parcel was so perfectly matched to me as if everyone at Smile for M.E. knew me personally. For example sending me bath products because I can’t tolerate showers, and including lots of crafty things there were also some metallic colouring pens and only recently to receiving my parcel I’d been thinking how much I’d love to have metallic colouring pens and I was going to put them on my Christmas wish list.
What I also loved in my parcel was the card that was also included for me written from one person with Severe M.E. to another. I could relate so much to the words that were written inside and it really meant a lot to not feel so alone.
My parcel and card reminded me in my felt isolation of my life with M.E. that people are thinking of me and it helped remind me that I wasn’t alone. For me the smallest gestures and things in life mean more than anything, more than the big things. A message or letter from a friend, watching my garden from my bed, the warmth of the sun on my face, enjoying a nice cup of tea, fresh bedding and pyjamas and other little things. I feel more gratitude for these small things now since I became unwell, especially since my M.E. has become severe.
M.E. can be a very isolating illness. I don’t have any friends that I see in person; I only really get to see my care team, carers, nurses physios etc. and close family but the interaction I find exhausting. I don’t have many friends and my only communication with them is either on WhatsApp where I message a couple of my friends but mainly I write to my friends. However I’m not always well enough to use my phone or write. I love pen palling and putting mail up in my room and writing letters is really important to me. Looking at the mail put up in my room brings me a smile especially on my bad days; the cards remind me how loved I am and that I’m not alone. Some of my friends and pen pals have M.E. too and all my friends have the understanding that because of my health I’m usually slow to reply, or I might only give a short response like a postcard which I really appreciate. Since becoming ill I’ve come to realise who my true friends are and the people that matter in my life.
I’ve also raised money for Smile for M.E. in the past through selling handmade cards; all together I’ve raised over £50 for the charity.
I do have to be mindful not to overdo it when I get lost in my creativity and cause myself to have bad Post Exertion Malaise (PEM) from not being mindful of how much I’m doing. I’ve discovered a list of low energy crafts that I can do from my bed. I’ll also break the process up; on my good days I’ll prepare the card at my craft desk where all my supplies are and then I’ll put it together another time, again I can do this from my bed. My over bed table has been a great investment, it was something I bought when I moved into my home; I also wanted a space for a craft corner in my new home so I have that space too with a desk and storage for my craft supplies. On my good days I can sometimes spend some time at my desk in my craft corner writing letters or crafting.
I think having a hobby of any kind can really help when you have a long-term illness. This could be anything, whatever takes your interest and you are able to do it not only helps you cope physically by giving you a distraction from your symptoms but it can help you emotionally too. Finishing a craft project for me gives me a sense of achievement.
As well as crafting I enjoy laying in bed and listening to books, sometimes I’m able to read; I like podcasts too. I enjoy blogging and I try to help others with M.E. and other chronic illnesses and disabilities through my blog.
There’s this quote I love: “there are things that are possible; things that are impossible, but otherwise I think that within my restrictions anything is possible.”
We can’t do everything but within what we can do we can do anything!
It is difficult living with M.E. in so many different ways. The hardest aspect I find is the unpredictability, not just struggling to predict one day to the next but struggling to predict one hour to the next. In the morning things can be manageable but in the space of an hour I can be struggling to function to do the simplest of things in extreme pain, too exhausted to pick up a bottle to drink, unable to tolerate most of my senses, a brain full of fog that struggles to function and so much more. No amount of rest during the day will reset my broken batteries so I have to just try and remember to do every pacing and activity management tool I know and most importantly listen to my body.
It’s been a struggle to get specialist services. I became ill in 2013 after a bad case of the flu despite being vaccinated. I became so ill I had to leave University. I eventually went to my GP but I just repeatedly was told I had Post Viral Fatigue Syndrome and with rest I’d soon recover. I never did. Eventually in 2017 a neurologist who I was seeing for something else assessed me and diagnosed me with M.E. but he didn’t explain it to me. I’d never heard of M.E. before and so I was left to go home and work things out myself and how to live with this illness. Back then my M.E. was moderate but it’s declined and now it’s classed as severe. We don’t have access to specialist services in our NHS Trust but currently I have a supportive GP who is trying to refer me to a specialist M.E. service that will take on out of area patients.
Despite the lack of specialist services I have been lucky after a long battle to get the care I need though there is a huge shortage of PAs. I’ve also been lucky to get a wheelchair from the NHS and recently I bought a wheelchair power add-on, my Batec which has been life changing. I’m also now waiting for my new wheelchair to arrive in the next few weeks and that will be much better for me as my NHS wheelchair no longer meets my needs. I’m also glad that I’ve been given the equipment I need to give me comfort and independence like my profiling bed, air mattress and bath lift; I’ve had some great Occupational Therapists and Complex Care Nurses over the years who have wanted to help improve my quality of life. I’m grateful for the community services like the nurses and physios and other professionals who come out to me. I’m also so amazed to have my own home that’s adapted for my needs. So I have a lot to be grateful for, but getting all of it has been a struggle at times to one degree or another.
I think more needs to be done to increase access to specialist support including making the support virtual or bring it to people’s homes. As well improve access to community care, like GP and nursing and community therapy teams and also improve social care services. On top of this improvements inpatient treatment care also need to happen too. Make people with M.E. feel believed and listen to what their individual needs are and meet those needs in all sectors of care. As well more education among health and social care professionals on M.E. is also needed. Care shouldn’t have to be a postcode lottery.
Naomi Gilchrist
Website: www.agirlcallednaomi.com
Instagram: @naomis.broken.batteries, @handmade.by_m.e, @agirlcallednaomi