Tips for living with M.E - M.E Awareness Week

Living with severe M.E comes with many challenges. Alongside dealing with the symptoms and medical side of the illness including juggling health and social care services which at times often leave you feeling let down, something I know for my own experience, there is the social and emotional aspects of the illness that can be challenging. Often you feel isolated as you're not well enough to go out and meet a friend for coffee for example or you may struggle to even see a friend at home as conversation can be tiring to do. I have, despite having severe M.E myself found ways to learn to live with the condition so here are some of my coping tips.

Make your bedroom a cosy happy space

Making your bedroom a cosy space makes it I find a nice place to relax and enjoy being in. This can include things like having bedding that you love, and putting up fairy light and having photographs on display. Most of all I love my giant notice board where I put up all my mail sent to me by friends and pen pals. It's nice to things on display that make you smile when you look at them. I'm also a person who love sensory things so I have my aromatherapy diffuser and also a Mathmos Space Projector both of which I find calming and relaxing.

Keep your bed tidy

Often my bed has a lot on it as a way of being able to keep things to hand but I've found that having a clear bed makes it a more relaxing space.

As a way of keeping your bed tidy you might find it handy to have a pocket organiser which you can tuck under your mattress. This way you can keep everything that you need to hand without cluttering up your bed.

Organisation

Being organised can really help. I can't profess to be the most organised person but I've found that trying to be as organised as possible can help. This includes keeping the floor space clear but also have some sort of organisation in how you store things in wardrobes, draws and cupboards.

I've found labelling boxes, cupboards, draws etc helpful so either myself or others know where to find things. I also find having sections for things helps - you can see and example of how I do this in my YouTube video 'How I organise my craft supplies'.

Have a schedule

One of the things I did with my occupational therapist was to create what we called a 'daily plan'. This is a schedule for the day with alternating activity and rest periods with other slots for things like meals, appointments, physiotherapy and winding down for bed. 

I find having a schedule helps give my body predictability and it helps me with activity management and pacing.

Plan

As well as my Daily Plan planning in advance hugely helps to try and minimise as much as possible the payback PEM (Post Exertion Malaise) or PENE (Post Exertion Neuro-immune Exhaustion) - the latter affecting me more. 

So as an example when I went for my pre-admission assessment at the hospital (which was on a Tuesday) I planned a restful weekend and Monday. I also had my COVID vaccine that week so I requested that to be on the Friday to allow me a couple of days to rest and recover. It didn't stop me experiencing a flare-up in symptoms and PENE but it did help having that gap.

Learn activity management, pacing & grading

These three tools are pretty essentials to living well with M.E whether you have mild or severe M.E. These tools I find help me manage my symptoms and allow me to engage in enjoyable activities both on my good and bad days even if it's a really bad day and all I can do is lay listening to a book.

Here are some of my previous blog posts on this topic: 'Pacing', 'Pacing, Activity Management and Rest'.

Hannah Ensor has writing a great book on pacing which I'd recommend; It's called The Pocket Book of Pacing. I'd also recommend the pacing post-it notes for planning your day/to-do list.

Finding ways to do the things you enjoy

Finding ways to adapt on how you can continue to do the things you enjoy can be immensely helpful. For example if you enjoy reading but struggle to read you may prefer to listen to an audiobook. Or if you enjoy writing to pen pals it may be easier to type letters rather than write by hand.

Audiobooks & Podcasts

I've found audiobooks and podcasts a bit of a lifeline. I struggle reading so audiobooks are a lot more accessible for me. I also find that they're good for my bad or rest days as I can just lay in bed or sit in my rocking chair and just listen to a book. Again audiobooks help pass the time and there are lots of different places where you can get audiobooks from. I personally use the RNIB library but I've recently been recommended some other places where I can get audiobooks from.

Start a project

I find projects help give me something to focus and work on and it's nice to see my project grow and develop. This is partly why I started this blog and now I've moved onto also keeping a YouTube channel. I also have my photo journal and my One Second Every Day project  As well as that my other project is my BSL (British Sign Language) course; it's making me longer to do than planned but it's nice to work on when I can.

Write letters

Writing pen pals are a great way to "meet" new people and devolve new friendships and to "socialise" with the people you write to. I love letter writing to both my pen pals and my friends (I see it as my version of sending a text) and reading letters hearing about my pen pals lives and reading what they've been up to and our common interests that we discuss. Just as equally I love replying to my pen pals and putting letters together.

If you don't feel able to commit to writing to pen pals you could join the Chronic Warrior Collective's monthly Card Swap which each month you can opt in or out of and you only commitment it to send one piece of mail to someone and in return you will receive something from another member of the swap.

Try and experience to outside world

Often when gong out is limited it can aid that isolation from the outside world. When I was in my long hospital admission I liked having a bird feeder which what stuck to my window and I liked watching the birds. I also like people to send or give me postcards such as when my Dad and stepmum have been away or from pen pals of the places where they live or have visited. 

If you are able to on a nice day try and sit outside if you can, even if it's just for 5 minutes, or get someone to take you out for a short walk to get some fresh air.

Practise self-care

Self-care is so important for or wellbeing; it helps us physically, mentally and emotionally. I feel personally that self care is even more-so important when you have a chronic illness. I talk more about this and self-care in this blog post which I wrote for Self-Care Week: 'Self-care when you're chronically ill'.

Along the topic of self-care I'd also recommend getting into the routine of practising mindfulness on a regular basis.

Other aspects of self-care is making yourself feel nice so this could be using your favourite toiletries, having a skin-care routine, putting on some makeup, learning different hair styles and putting on your favourite clothes or pyjamas. I have been known to spend the day on my bed wearing my favourite vintage style dress just because I felt like dressing up nice.

Also, don't compare yourself to other people. I'm guilty of that myself seeing people around me doing an achieving the things I'm wanting to do and achieve myself including those I know which M.E or other chronic illnesses. But our circumstances are uniquely our own and everyone is on their own path. Equally what we see especially on social media we have to remember is a carefully selected snippet of people's lives and we don't see or know the full picture of what that person is sharing, or even if what they are sharing is true.