M.E, Me & My bed

How I’ve set up my bed space

My bed set up

Most of my day is spent in bed because of my Severe M.E. My body can’t tolerate being sat up like in my wheelchair for very long due to my Orthotic Intolerance (an aspect of my Dysautonomia). My symptoms are also more manageable when I’m laid in bed. When I’m feeling crashed or experiencing Post-Exertion Malaise I often can’t get out of bed at all.

Over time, especially since getting my own home, I’ve developed a good set up in and around my bed to make life easier for me. Occasionally I change things but my set-up is pretty well established with everything I need.

I’ve attached links to all the products I have where I’ve been able to find the product as some companies that I originally bought from don’t exist any more.

My bed

Prescribed to me by my Occupational Therapist or Complex Care Nurse, so they’ve been provided to me by the NHS.

My profiling bed 

My profiling bed is like a hospital bed but it looks less clinical. It still has all the functions: raising my head and my legs, tilting and raising the height of it.

Because of my POTS my bed helps me as I’m able to sit up in little increments, this especially helps in the morning. I can also tilt my bed when I’m have a POTS episode.

I’m able to independently get myself comfortable.

Raising the hight of the bed helps when my PA’s, carers and nurses are caring for me or doing tasks like changing my bedding.

I keep my heat pad near my bed so it’s easy to reach on my own and I hand my headphones on the grab rails so they’re close by.

My hybrid airflow mattress 

My mattress is a static mattress at the bottom with an airflow mattress on top. It has moving tubes of air to making it a pressure relieving. On top of the airflow tubes it has memory foam which I find more comfortable compared to my previous mattress that didn’t have the memory foam layer. I much prefer this mattress because on my bad days when my hypersensitivity is worse I don’t feel the mattress moving as much compared to my old one which I found more painful.

Bed accessories 

Body pillow 

I don’t know how I’d cope without my body pillow. My current one is a memory foam one from Pillow Pod. It contours to support my back, hips and legs. Because of my muscle weakness it holds and supports me in place in bed; it also helps with my pain too and it helps me to get more comfortable whatever position I’m in. It’s also supports my unstable joints which I have because of my Ehlers-Danlos Syndrome. 

Giraffe bottle

Top: Flexzi stand
Bottom: Giraffe bottle

My Giraffe Bottle is another essential feature on my bed. I have a plastic bottle for water and I have a stainless steel bottle for hot drinks. I struggle to lift bottles and cups a lot of the time so my Giraffe Bottle enables me to position the straw in front of me whether I’m sat up or laid down and to drink hands-free. The straw stays in position as it’s in a gooseneck.

The bottle sits in a holder that is clamped to one of the grab rails on my bed.

I did have the Hydrate bottle before but I struggled with straw as it would often fall on the floor.

Flexzi iPad & kindle stand

The Flexi stand is another essential on my bed (I had to go for the pink one!) You can put Velcro patches on things to attach items to the Flexzi stand. I mainly use it for my iPad and my Kindle. I have it clamped onto one of the grab rails of my bed. (I’m still able to use the grab rail which is helpful.)

It’s so helpful as I don’t have to struggle holding items or having them balanced on my lap or placing them on my over bed table. Especially because a lot of the time I’m laid down so I’m able to position my iPad or kindle in whatever way is comfortable for me.

With my Kindle I’ll also use a page turner remote as tapping the screen is difficult a lot of the time especially when I’m laid down.

Over-bed table

I find my over bed table quite multi-functional. I can use it to put what I need near me on it like drinks, medication, hand sanitiser, headphones, my Kindle etc. I can also do activities in bed on it or I can clear it and title the portion of the table that tilts if I’m doing a particular activity. I can have meals on it. My PA’s can also put all the things I need on it for a wash in bed.

The table raises so if I need to raise the hight of my bed I can raise the hight of my table.

Essentials to keep in my beside draws

Organised draws

Firstly I find organisation a must have. I use draw organisers to keep everything neat and tidy and in its place making it much easier to find what I need.

My main essentials in my top drawer 

• Clinell hand sanitiser wipes
• Hair ties
• Hand cream
• Pixi lip balm
• My pouch containing my Kindle’s page turner
• Aveeno hand cream
• Remotes for my fairy lights, lamp and Dyson fan (I can also voice control my fan or use the app)
• High NRR ear plugs and my Loop earplugs - I also have pink noise cancelling ear defenders in a lower draw as sometimes I find headphones more comfortable to wear
• Wired earphones - I use these as an alternative to my noise cancelling headphones as even on ‘aware mode’ it’s still difficult to hear around me so when my PA is about and I need to be able to hear and communicate with them but equally I want to lay in bed and listen to to my book I’ll plug these into my iPad
• Hand held magnifier, an alternative to using these CCTV magnifier on my mobile

Communication cards

Communication cards

I have a set of communication cards in my top drawer. These are just some of the cards that say:

• ‘I’m feeling crashed and I’m too tired to talk right now’
• ‘I need some help’
• ‘I need pain relief’
• ‘Can you help me eat’
• ‘I need some time out to rest’
• And a few more including ‘yes’ and ‘no’

These communication cards are different to my blue Stickman Communication’s blue communication book which is more of a mini medical book that I carry around in my wheelchair bag.

My medication draw

One of my bedside draws is dedicated to medication and medical equipment. In there I have all the essential medication I need beside me like my pain relief medications, IBS medications and other PRN (as and when needed) medications. Like my other draws this draw is also neatly organised. I also have a pot for oral syringes to keep them together. So I don’t have lots and lots of boxes of medications I have a medication organiser. It’s a little case with compartments in it. In there I have my medication and of course I’ve labeled each compartment so I know what medication is in where. Other things I have in this drawer in my thermometer and my pulse oximeter. I also have an assortment of things for my migraines like 4head and Kool gel patches and my Koldtech headband. I also have a spare blue inhaler. I also have some self-warming heat wraps. There is more but that’s a good summary of this draw. This is the only draw that I’ve labelled, just to make it easier for others to me able to identify it.

Snacks 

I keep a few snacks like dried fruit and gluten free crunchy oat bars. Some of my medication like my migraine medication needs to be taken with food so having snacks I my bedside draws means I’m able to take my medication without having to get out of bed. 

Skin and dental care

In my second draw down I have a packet of aqua wipes and some mini skincare products so I can cleanse my skin in bed. I also have Colgate Wisps which are like mini disposable toothbrushes with toothpaste in them so I can mess free clean my teeth in bed if I’m not able to get to the bathroom. 

On top of my bedside draws

The top of my bedside draws

I have a lamp as that helps give my room some low lighting. I’ll get more onto lighting below. I also have a box of tissues and a favourite coaster so I can have a drink near me.

My charging station 

I have a charging station with a holder for the magnetic charging port for my iPhone and also my Apple Watch. This is helpful as I don’t have the struggle plugging my phone into a cable. 

My HomePod 

This is the Apple version of an Alexa. It’s a speaker, I can voice control my home, it’s an intercom to the HomePod in the front room, I can set timers and alarms, add things to my lists like my shopping list or to do list and so much more.

My inhaler case and blood pressure monitor 

I have a case with my inhalers and spacer in it. This makes it easy to keep everything together as well as for in the event of my asthma getting worse. On top of my inhaler case I keep my blood pressure monitor which is in a case. It’s a wrist blood pressure monitor. I have to carefully monitor my blood pressure because I’m on medication that lowers my blood pressure and because of my POTS I have low blood pressure as part of my POTS. 

Emergency information

Emergency info

On my windowsill I keep all of my emergency information together. 

I have my ReSPECT document, this a document to give to paramedics in an emergency outlining my care wishes in advance.

My red file is my Medical History Passport. This contains information about me, my medical conditions, care plans, ways I communicate, medication I take, medical devices, past surgeries and ED admissions among other things. 

Then I have my denim Filofax, this has my Stickman Communication cards in. This Filofax has my emergency Information, cards briefly explaining my different medical conditions, yes and no cards, a pain score card, a card explaining my joint problems (so to be careful with moving and handling), a card about local anaesthetic and EDS, a card to say that I have someone with me to support me and to not separate us, a card about my dark glasses and a few other cards on other topics. 

Smart tech in my bedroom 

I have a lot of smart technology in my home, especially in my bedroom environment. This gives me more independence to be able to do things and not have to rely or wait on other people or struggle to do something on my own. The voice control is especially helpful. I just say Siri commands into my HomePod and I’m able to control the environment around me.

If you are bed-bound or mostly bed-bound I would highly recommend smart tech like lighting and blinds, plus heating if you live alone. When buying a fan I would recommend looking for one that has links to Apple HomeKit, Alexa, Google Home etc.

Lighting

In my bedroom my lighting, my lamp and main light has Philips Hue smart bulbs in them. I can control the lighting on AppleHomeKit either with my voice or with the HomeKit app. I can change the brightness and hue of the light. I also have set ‘scenes’ so I can say ‘Siri Evening’ and the lighting will go to a preset setting around my home.

Because I keep my bedroom dim because of my M.E I find being able to turn to lighting like my lamp on at a hue and low percentage really helpful as it gives me a little extra light but not too much light if I weren’t to have smart lighting.

My smart blind 

This was something I discovered last year and it is so helpful to have a voice controlled blind. I also have it on automations so in the morning at 9.05am the ‘good morning’ scene comes on and my blind raises a little to give me a little light. (I have Venetian blinds behind my Smart Blind which the vast majority of the time are kept closed.) I can however just ask Siri to close the blind for me if I can’t tolerate the light. On dull, dark, rainy days I can raise the blind up. There’s also a remote control for the blind which makes it easier for my cleaner and PA’s to operate the blind.

Hive heating 

I am so glad that I finally got Hive Heating. Now I can put on and control my heating with ease either with voice commands or via the app on my phone. Before I’d be sat cold in bed in the morning until my PA turned up to work or I’d be unable to turn the heating on or off on my own because I couldn’t reach the thermostat. Now I can put the heating on for a set time just to warm up my home like in the morning or if i woke up in the night feeling really cold. It’s especially important to stay warm for me as getting cold makes my symptoms worse like my muscle spasms, and I have a low immune system and because of my dysautonomia my body struggles to regulate my own body temperature. My Hive Heating has defiantly been a good investment. 

My Dyson fan

My Dyson Fan in my bedroom has links to Apple Shortcuts. I’ve set up a series of voice commands such turning the fan on and off, different speeds, night mode etc. so I can now say those voice commands to my HomePod to control my Dyson fan. I can also control my fan on the app or with the remote if I’m unable to use voice commands.