Living with Severe M.E.

It can be really difficult living with severe M.E., I spend so much time here in my bed, in my bedroom. I’ve found it important over the years to make my bedroom a lovely space to be in. Here are some of my tips I’ve found that have helped me cope with having M.E. in different ways. From making my bedroom a lovely space to just general ways of coping day-to-day - some things I plan to go into more detail in future blog posts  

Bring the outside world in

Whenever my family go on holiday they collect a selection of postcards for me. This allows me to experience different places around the UK and the world. I also love it when they send photos of places they’re visiting. 

Personalise your bed 

I find having my favourite bedding and washing it in my favourite laundry projects such a lovely thing. Having my favourite bedding gives my bedroom a touch of my personality and accessorising it with things like blankets just makes my bed a lovely place to spend time in. I also have my comfy body pillow - maybe you could add some cushions too. I also find having normal bedding on my profiling bed and medical mattress makes my bed look less clinical.

Use your imagination

Imagination can be such a powerful thing. On my worst days or when I have a migraine or I can’t tolerate any light or sound I turn to my imagination. I’ve been all around the world: to Central Park, the Blue Mountains in Australia, to the Costa Rican rainforest and to my own private beach in the Maldives.

If I can tolerate it I listen to soundscapes and let them aid my imagination to take me to different places.

I find my imagination relaxes me as well as distracting me from the increase of my symptoms that I get on my bad days.

Lighting

Lighting is a great way to create a lovely space in your bedroom. I love fairy lights and my sensory lighting. I have a Mathmos Space Projector as well as a mushroom lamp that offers different light modes such as a choice of colour, brightness and a colour changing mode; this lamp comes with a handy remote.

Smart lighting I find is really helpful on a practical level too as I can control my bedside lamp from my phone or with my voice. I can set it to different levels of brightness as well as the tone of the light colour.

Get green fingered

If you’re able to, in terms of letting light into your room and also able to look after plants having plants in your room can be another way of bringing a bit of the outside into your room. Plants like succulents and peace lilies and oxalis’ are very easy to look after.

Dealing with medical supplies in your bedroom 

Sometimes it can be hard to get the balance right when you have medical equipment and supplies in your bedroom. You don’t want your bedroom looking too clinical whilst at the same time having what you need and having supplies at hand and having the equipment you need to aid your independence and health.

For me I have a profiling bed and air mattress; I find having nice bedding on it makes it look a little less clinical and at the foot of the bed where the mattress motor is I’ve put a little bunting. I also have a Flexzi iPad stand and I chose pink so it adds a pop of colour. My over bed table doesn’t look out of place. I’ve seen people decorate their IV poles and I've also seen medical supplies cupboards with coloured accents or I’ve seen people use the three tier trollies for supplies. For me I keep what supplies I need at hand in one of my bedside drawers and in a box under my bed then the remaining supplies I’ve organised hidden away into draws in my wardrobe and in a large cupboard in my bathroom.

Sometimes though it’s inevitable that medical equipment from beds, IV poles, mobility aids, hoists and supplies having to be out for ease of access or simply because they can’t be moved out the way as they’re needed frequently or they fixed in place.

Aids, equipment & gadgets

It can be really helpful to get some gadgets in your room to make life a bit easier and to give you a bit more independence. 

One of my favourite gadgets is my Flexzi iPad holder it’s amazing for positioning my iPad whilst I’m reclined or laid in bed and I have to spend a lot of time like this in bed. 

Another really helpful item is my over bed tabled, part of the table tilts so it’s great for being able to do activities in bed. I’ve also clipped a rechargeable light onto my table too. An alternative is a a bed table; I have a lovely bamboo one that also has a portion that tilts or another option is just a simple lap tray, personally I prefer the ones that curve around you.

I also find my Dyson fan great for my room. I have the hot+cool fan so it’s perfect for all year round. I can control it from my phone or with voice commands or alternatively with the remote. Even though I live on my own it can be helpful to use the heater on my Dyson as it means I don’t have to get up to turn the thermostat up if I’m not able too. For me I struggle with dysautonomia so I find it hard to stay cool or warm up so it’s important to have my room cool/warm to manage my symptoms.

Audiobooks have been a lifeline for me

On my bad days or when I’m fatigued there’s little I can do. Audiobooks have become a lifeline for me and they help keep me occupied. They also aid my imagination and I love listening to a wide variety of genres.

If because of your disability you have a ‘print disability’ which includes those with physical disabilities who struggle to read books as a result such as holding the book or being able to cognitively concentrate or read print etc then you may be eligible for some of the free audiobook libraries such as RNIB and Listening Books - many local libraries now also have e-libraries with access to free audiobooks. I recently joined my local library on the recommendation by my best friend and I was able to join over the phone.

Activities 

Spending so much time in my bedroom and in my bed I’ve found it important to find ways to do activities I enjoy. These have mainly been low-level activities as it’s mostly what I can tolerate but I’ve found ways to be able to do more energy consuming activities too.

Some ways I’ve found the ability to do activities is from using my Flexzi iPad stand which I can mount my iPhone onto as well. My table which I mentioned above has also really enabled me to do activities whilst in bed too though sometimes I use my lap tray.

There are many activities that can easily be done from your bed: different crafts, activity books, reading, listening to audiobooks/podcasts/music/radio, watching television programs, gaming, writing, journaling, blogging, filming for social media - the list goes on and I will do a dedicated blog post on this topic at some point soon.

Feeling pretty

Sometimes when I’m feeling up to it putting on a bit of makeup can make me feel much brighter. I also like to dress up nicely too some days even though I’m not going anywhere or seeing anyone other than PAs/carers. Another thing I do is styling my hair or if there’s some free time getting my PA to curl my hair for me. I also like to spend time on my nails too, painting them and doing nail art.

Friendships

For me my friends remind me I’m not alone and that I’m not forgotten. My friends are people I can talk to about anything, good or bad. If either of us are having a difficult time or just to chat about our day, what books we’re listening to, to motivate one another, to have someone to confide in. Just simply being a friend. Oh and to exchange funny animal videos with - that friend if you’re reading this you know who you are!

Friendships are really important because of the isolation we live in. I don’t have any friends locally and for some people meeting with friends in person can only be brief or not possible due to the limits of their M.E. Technology really helps. I chat to my friends on WhatsApp, sometimes it’s typed messages with other friends we send voice messages; it’s whatever is easier for us to do but it keeps us connected. I also like to write to my friends too the old fashioned way through the mail.

Pen pals

Pen palling is something that really helps me. For me it gives me a connection to the outside world and to other people. I love reading about my pen pals and friends life’s and what they’ve been up to and writing back to them; it takes my mind off what I’m going through physically as I’m replying writing about what I’ve been up to such as what books I’m currently reading/listening to or discussing something with a pen pal such as the antics their pets get up to or their work or college course. I also feel like I’m talking to a friend when I write my mail replies too.

I also join in the Warrior Card Swap which is a monthly scheme where you send mail to someone and you receive mail back from someone else. I really enjoy this and if I’m ever having a bad month I can always opt out. Through this card swap I’ve made friends and found new pen pals.

I love displaying my mail on my notice board too. On there I put the cards, postcards and other bits I’m sent. Looking at my notice board reminds me of the kindness of the person writing to me and the quotes on there have a personal meaning to me. Again like my friends my notice board reminds me I’m not alone and that people are thinking of me.