Living with M.E and EDS - What my day looks like

I thought I’d share with you my daily routine and how having both M.E and Ehlers-Danlos affects every part of my day and how I try to manage my symptoms as well as what it’s like to live with disabilities and chronic illnesses; especially ones that limit my energy and ability to function.

I’ve literally been working on this post all month. Blogging is hard with limited energy and when you’re dealing with Post-Exertion Malaise from other things in life but I enjoy it and I love seeing how many people my blog reaches and I hope it helps readers; makes them feel that they’re not alone and hopefully through sharing my lived experience I can share ways on how live with a disability or chronic illness and it will help other people out there. Though blogging is difficult for me at times and I get frustrated that I struggle to not blog as much as I’d like to this is what keeps me blogging. I would have liked to have blogged more this M.E and EDS Awareness Month this has been the main post I’ve been working on. Maybe next year I’ll be more organised and plan ahead.

My day…

Waking up

My blue smart blind

I usually wake up feeling like I haven’t slept. I also have difficulties with sleep so a lack of sleep often makes my symptoms a lot worse during the day which then makes my sleep at night worse. It’s like a never ending cycle but this isn’t unusual if you have M.E.

I find waking up at the same time, 9am, helps. I also have time to wake up and get functioning ready for when my PA arrives. If I could sleep in and didn’t have PA’s each day I probably would and would love to sleep more especially as I often sleep so badly.

I sleep on a profiling bed with a hybrid airflow mattress. My profiling bed allows me to sit myself up, get comfortable independently, raise the hight of the bed for care tasks with my PAs and nurses as well as tilt the bed to manage my POTS. My mattress helps to prevent pressure sores especially as I spend such a long time in bed. I’m also a high risk for pressure sores be cause my skin is more fragile because of my EDS and because I have reduced mobility. 

I also have a body pillow which I find supports my body which helps with my EDS joint instability and also when I’m quite tired and my muscles are weak.

Sitting up slowly

Once I’m awake I lay and allow myself to wake up. My smart blind automatically rises a little at 9.03am and a little more at 9.15am to allow me to adjust to some daylight (my blinds behind my smart blinds are still closed), I just find this helps with my light sensitivity. Usually just my smart blind stays up during the day so my bedroom is kept dim. Sometimes I do open my other blinds if I can tolerate the light. I wear dark glasses as well.

At 9.15am I take my morning medication. I usually read or watch a bit of YouTube until my PA arrives at 9.30am.

I sit myself up in little increments which I find is better and helps my orthotic intolerance and POTS. - With both M.E and EDS it’s very common to have dysautonomia which is problems with the body’s automatic functions. Orthostatic intolerance and POTS: Postural Orthostatic Tachycardia Syndrome, are two conditions under the umbrella term of dysautonomia. Basically sitting and standing are difficult for my body to do and cause dizziness, low blood pressure, high heart rate and feeling faint and actually fainting (syncope). As a result of this I spend a lot of time laid in bed and I have to use my wheelchair.

My time with my PA’s

My PA’s Alison or Emily get here at 9.30am. They make my breakfast for me. Doing small tasks helps me as it helps save my energy for other things and for later in the day, it also helps to minimise the severity of my PEM (Post-Exertion Malaise) later in the day.

As an alternative to agency care I get Direct Payments allocated to me from adult social care to employ Alison and Emily to support and care for me. I’m allocated hours for a mixer of personal care, social support and to do my weekly food shopping.

Getting ready for the day

My bath lift

Usually I get a bath in the morning; because of my hypersensitivity with my M.E I can’t tolerate showers. I use a bath lift to get in and out of the bath and I have help to lift my legs in and out of the bath. On a bad day I’ll have a wash in bed.

I try and do as much for myself as possible. My PA prepares my toothbrush and I brush my teeth. I wash my own face I just have my PA wet my flannel mitt for me. My PA’s do wash me as this is something I struggle to do and I’m usually getting tired by this point. I do break the tasks down so after each task I’ll rest so I can be in the bath for some time. Towel drying is a joint task. I’ll get dressed on my bed which my PA help me with and I also have barrier creams put on me to prevent or treat pressure sores. 

If I’m having a bad day I might put on clean pyjamas and have a PJ day but as much as possible I try to wear ‘day clothes’ to help with my sleep. I’ve found maternity jeans a great tip for wheelchair users as well as for comfort laying in bed.

I often wear funky compression socks which I find helps with my circulation and blood pressure. Sometimes though I find the tightness can irritate my M.E’s hypersensitivity and the pain I get in my legs when my M.E flares-up.

I have to be careful when dressing and undressing because of my EDS as my joints are so unstable and cause easily sublux or dislocate.

I also have to deal with my SPC catheter. I have bladder failure because of my EDS as EDS can affect organs in the body; my EDS also affects my digestive system and heart. I like to choose a tubie pad set that will match my outfit of the day. I also like the wear bag covers as I feel more comfortable and confident with a bag cover and line cover especially if I have to go out. I’ve got some cute sets like yellow ducks, dinosaurs and floral designs.

Once I’m dressed I’ll transfer into my wheelchair and I’ll do a self-care skincare routine. I’ll also brush and style my hair. When Emily is working I’ll ask her if she can braid my hair. I find braids great as I love my hair braided and it keeps my hair out the way for a few days.

My PA’s will also ensure I’m wearing my CareLink watch which detects falls or I can press it should I need help in an emergency - like the time when someone came into my back garden at 3am or when I had a severe asthma attack.

I’ll also put on my CMC thumb braces on both hands. These are the only two braces that I wear all the time as I get a lot of pain there and I use my hands a lot. I’ll put other splints and braces on when needed such as post-dislocation or if a joint is being particularly painful or unstable, or to support it when doing a task like typing or writing.

After getting ready for the day 

Once I’m ready for the day my PA will make me a hot drink. I always drink drinks with a straws and hot drinks at a cooler temperature. Often I’ll drink out of a lightweight lidded cup too as I have weak wrists so holding and drinking out of a mug is often difficult for me. I find straws really helpful and now with the ‘straw ban’ I ensure one is always on me. Lidded cups and lower temperature drinks are also safer for me.

Usually my PA’s finish at 2pm during the week and 12pm on a weekend. On a Tuesday Alison does my weekly shop for me so she’ll finish early.

If I have a medical appointment I will ensure it’s within the window of my PA’s hours so they can take me. I also need someone with me at all times when I leave the house in case of emergencies or I start to become unwell or I get tired etc. At appointments my PA can also sometimes add in information on my behalf at appointments too which is really helpful especially as I get forgetful and brain fogged. They can also assist me like if I need to get undressed and into a hospital gown if I’m having a scan or just provide me with emotional support.

Sometimes if the weather is nice I like to go out for a ride with my Batec - my wheelchair power add-on. Getting out the house with my Batec massively helps my mental health as I spend so much time in my home. Sometimes I go around my estate or to the postbox but even if I just go up and down the road it’s nice to get out and get some fresh air.

We do other thing activities too like batch cooking homemade meals, baking and crafts. 

What I do during the day…

One of the first things I try to do after my PA leaves is do my daily bullet journal for the day. I’ll write my to do list and any reminders to myself as well as upcoming appointments etc. so I’m able to plan and pace my day. I traffic light each task on my to do list to help with activity management. My bullet journal is like my second more functioning brain and I’d be quite lost without it. I also use it to track my health, symptoms, self-care and sleep and other things like my spending and books I’ve read.

I have regular rest periods throughout the day where I’ll lay in bed and listen to an narrative soundscape or a mindfulness meditation. I find rest doesn’t restore my energy levels but it just puts a pause in my day and allows my mind and body to just stop especially before I hit the crash point. I find that if I don’t rest my energy levels will complete crash and my Post-Exertion Malaise will be a lot worse. I’ll also lay with a podcast or audiobook as restful activities.

My over bed table for activities

I try to set one ‘main activity’ each day, like today it was to type a bit of this blog post. Some activities I’ll do on my own others I’ll do with my PA depending on the activity and day as well as whether I’m having a good day or not. On bad days resting is more of a priority than doing an activity,

I have to spend most of my day in bed and I’ll know the signs for when my body is needing to lay down with my Orthostatic Intolerance. 

I do try to spend some time out of bed each day and that’s one reason why I love my new wheelchair as it allows me to be able to get around my home. Plus being seated in my wheelchair is much safer for me and it is more manageable for my OI and POTS. I try and sit in my front room for lunch and tea at least and spend a little time at my craft desk too just for 5-30 minutes if I can. It just gives me a change of scenery from my bed. In the summer when the weather is nice I’ll try to go out in my garden; I have a garden bed so I can lay down and enjoy being outside.

If getting to the bathroom is challenging I’ll attach a day bag to my catheter so that helps my M.E.

I’ll normally do a mixture of resting, laying and listening to my audiobook or a podcast, doing a activity if I’m able to and just general other stuff all mostly in bed until my PA comes back to work around 3.30/4pm.

If I have an appointment that day (not just medical appointments but dates in my diary for say Dad visiting) my day will be dedicated to resting, as will the day before and the days after as after I will experience PEM. I try to limit my appointments and space them out as much as possible to give myself time to recover.

Post-Exertion Malaise

PEM is a key symptom of M.E, fatigue also comes along with EDS as well. PEM is a flare-up of M.E symtoms as well as an experience of other symptoms following any form of physical, cognitive, emotional or social activity. PEM can com on hours or days after the activity and recovery can take days, weeks, months or even longer. Even the smallest things like talking can cause me to experience PEM. The hardest thing I find with PEM is I don’t know when it will really hit me, how bad it will be and how long it will take me to recover. 

I experience PEM daily and by mid afternoon around 2/3pm my body is struggling with PEM from my morning routine and any activity I’ve done that day like my ‘main activity’ is really affecting me.

I also experience PEM from other activities like appointments or spending time with my Dad. The PEM from bigger things like this they will crash me much more and my M.E symptoms can be much worse and the crash will last a lot longer and will take longer to recover from. I might struggle to feed myself,  be unable to drink out of a cup, unable to talk and move, my pain levels are high, I struggle to tolerate noise and light much more than normal. These are a few examples of just how severe M.E can be for me just from simply leaving the house to see a doctor.

My bedroom and bed space

My bed with accessories:
Giraffe hands free bottle
Flexzi stand
Body pillow

Most of my day is spent in bed at various degrees. Having a profiling bed is so helpful as I can independently lay myself down and get myself comfortable. My body pillow is very supportive both for my EDS joints and the weakness I have in my body because of my M.E especially when I’m tired or having a bad day.

I’ve developed a bit of a set up in my bed space. I have everything I need organised into my bedside draws. I also have a Flexzi stand for my iPad and kindle (which I also have a remote controlled page turner for which is great for reading laid down). I also have a handsfree water bottle or I can swap the bottle and be able to drink hot drinks handsfree - this is especially helpfully when I struggle to hold, lift or drink out of my lidded cups whether it be because my M.E has flared up or because my EDS is bad in my wrists and hands. I also have my over bed table which is great for putting things to hand on, or eating meals off or do activities in bed.

I keep my bedroom low-sensory. I usually have my blinds closed and my roller blind is voice controlled so I can close that if I need more darkness. It’s nice and quiet too but I often wear my noise cancelling headphones as well.

I find smart technology really helpful when living with severe M.E. I can voice control my heating, fan and lighting too; alternatively I can control everything on my Apple devices. I have soft lighting in my bedroom and I love fairy lights and I love my remote control mushroom lamp which I can set a colour I find I can tolerate and I can dim/brighten or use it as a sensory lamp.

Evening PA time

I’m usually quite tired by the time my PA gets to me around 3.30/4pm. I have a list of ‘bad day needs’ for when I’m having a bad day and I might not be that talkative when I’m tired and in pain. I find my EDS pain gets built-up during the day too.

In an evening my PA’s will help me get ready for bed. I’ll have a wash in bed which my PA’s do pretty much most of. I use a towel off foam wash from NilAqua that I highly recommend. More barrier cream to put on.

I’ll rest in bed while my PA makes my tea. I’ll eat my tea either in my from room or in bed depending on how I’m feeling.

My PA will do other jobs while I’m eating.

Before they leave they’ll ensure I have everything I need for the rest of the evening and night time.

Once my PA has left and my evenings

I usually go back to bed if I’m not already in bed once my PA has left. I’ll rest and listen to a soundscape a well as lay and listen to a podcast. I might also watch some television (I’m really into police body cam documentaries on YouTube at the moment). I don’t watch a huge amount of television as I find it quite sensory overwhelming. I’m also really enjoying colouring at the moment I’m a bit obsessed with my pens and colouring pages from Calm Over Chaos currently - I’ll colour and listen to a podcast for a bit as my evening activity if I have the energy. I have a very busy mind so I find resting really difficult - not helpful when you have M.E and you’re feeling exhausted. I find I can just about entertain myself with podcasts or my audiobook or reading my kindle. I try to do restful activities in an evening as my energy levels are low and I’m pretty exhausted and in pain. I find I need to distract myself from my pain and symtoms as well until I’m ready to sleep.

If I’m having a good evening I can get into m wheelchair and get myself a hot drink like a decaf coffee. I like flavoured decaf coffees. If I’m not having a good evening I’ll ask my PA to leave me a coffee in a thermal tumbler so I can still enjoy a coffee later in the evening.

Sleep

Sleep is really difficult for me. I have some evening inf where I accidentally fall asleeep while listening to a podcast and I’ll wake up in the morning with my glasses still on and my duvet still folded over unswept in. Then I get other nights where I just cannot sleep at all sometimes because I’m in pain other times it’s just  because my body refuses to fall asleep. Thankfully I do have an appointment with the sleep clinic next month so I’m really hoping them can help with my insomnia as I have insomnia a lot and when I have a lack of sleep my M.E is much worse the next day.