A day in my life

Waking up 

9am: This is when my alarm goes off to wake me up, I find it helpful to keep to a routine and wake up the same time each morning. Sometimes I’m awake before 9am, usually because I’m in pain; if I do wake early I just take some pain relief if needed and lay in bed and listen to a podcast or audiobook until its time to start my morning routine. I have an Apple Watch and I monitor my sleep on the Apple Health app, my aim is to get 10 hours of sleep. If I sleep well it helps me to function a bit better during the day; if I don’t sleep well then it makes it harder to function and it has a negative impact on my symptoms.

Recently I’ve been waking up with a lot of neuropathic (nerve) pain in my left hand affecting its function too. I can also wake up with subluxed or dislocated joints as a result of my Ehlers-Danlos (EDS).

9.15am: This is when I take my morning medication. I use a Pivotell® medication carousel that sets off an alarm to help me to remember to take my medication; I also take my pink inhaler which has a lovely floral case from Inhaler Tailor - I like to accessorise medical devices as much as possible to make them look less clinical. I also find it easier to use a spacer with my inhaler. - I log all the medication I take, both regular and PRN (as and when needed) plus every time I use my inhaler on the Apple Health app to help me monitor and keep track of things especially as I get so forgetful, it also serves a great help for things such as medical appointments such as my asthma reviews or when I’m asked what medication I take.

I allow my meds to kick in and then I start to slowly sit myself up. I have to do this because of the problems I have with dysautonomia and orthostatic intolerance, basically if I sit up too quickly my blood pressure drops and my heart rate goes up and I get really dizzy and I’m at risk of passing out. I also have to spend a lot of my time laid or reclined during the day as my body can’t tolerate being upright for too long. This is one of the many reasons why having my profiling bed is so helpful as I can sit myself up in little increments or recline if it gets too much until I’m fully sat up and ready to get out of bed; I can also tilt my bed to raise my legs higher up which helps if my dysautonomia symptoms are playing up. Dealing with a dysfunctional autonomic nervous system (dysautonomia) can be really difficult as there are a multitude of symptoms and things that can go wrong in the body all of which are very unpredictable.

9.30am: Once I’m sat up I put on my CareLink around my wrist, I can press it if I need assistance in emergencies and someone will come through on the intercom box, it also detects falls so should I fall it immediately alerts CareLink. I allowed my body to adjust and I’m able to safely get out of bed - so if I get out of bed before my body is ready and I pass out my CareLink falls detector will be alerted. I then disconnect from my night bag. Next I’ll make myself a coffee and the return to rest in bed. I’ll usually listen to something on my iPad like my audiobook or a podcast and I’ll play a game like The Sims or do a jigsaw puzzle, some mornings if I’m not feeling great I prefer to just lay and listen. - I find my MERU Flexzi iPad stand really helpful, it’s attached to the bar on my bed and allows me to use my iPad more easily especially when I’m reclined or laid down in bed. 

If I can tolerate it I’ll open one of my blinds a bit to allow me to start adjusting to the light, later, once I’m dressed I’ll open the other blind a bit if it’s a day where I can tolerate a bit more light. On my bad days with M.E. or my migraines my hypersensitivity to light is worse and so I find the light painful so I’ll keep my blinds closed.

If it’s a day where I’ve got agency care I’ll get my breakfast around 10am which I usually make the night before to make it easier on my morning routine as all I have to do is simply get my breakfast out the fridge.

I’m not completely my best in the mornings; I usually wake up more tired than when I went to bed which is a feeling often felt by people with M.E., I’m also just generally not a morning person either.

When my PA arrives

I have a PA to support me in the day but once a fortnight I have three mornings when I have an agency carer instead as I’m struggling to recruit PAs. My PAs work for either 2½ or 4½ hours depending on what day it is, agency carers are here for 1½ hours. - I’ll write this as though it’s one of my PA’s shorter days to work so you can get an idea of what I enjoy doing in my free time and also what my symptoms are like during the rest of the day.

10am is the time my PAs Diane or Jo start. (My agency carer usually arrives around 11/11.30am)

My PA will make my breakfast for me, usually porridge along with a drink and we’ll have a chat. Sometimes at this point I’m still not feeling fully awake. After breakfast and chatting for a bit we’ll put the bath on to run (my bath is the slowest filling bath in the world!)

My bath lift

Whilst the bath is running we get my clothes out for the day along with my creams. I have a few creams that I apply which are different barrier creams to prevent me from developing pressure sores. Alongside my creams I also have a hybrid airflow mattress which one of my nurses provided me with and this also helps alleviate my risk of developing pressure sores. - I’m assessed as being a higher risk for pressure sores as my skin is more fragile and I have poor healing because of my EDS as well as this even though I’m not bed bound I still have to spend the majority of my day in bed so the creams and mattress help as a preventative and so far they’ve done their job.

With the support and enablement from PAs/carers I have a bath. I try to remain as independent as I can by doing as much as I can without exhausting myself out with Post Exertion Malaise (PEM) either now or later in the day. I usually what I can manage to do is wash my face and brush my teeth and I help to dry myself too. I can’t tolerate showers as with my hypersensitivity showers to me feel like a powerful painful jet wash. To get in an out of the bath I use a bath lift which is a seat that lowers and then reclines me into the bath and then it will do the reverse to get me out. I’ll get dressed on my bed, to protect my PA/carer or if I have a nurse visiting me I’ll raise up the height of my bed to protect their back so my profiling bed not only benefits me it also benefits those caring for me.

12pm: I’m usually dressed by this time. It’s important to pace everything I do to lessen my PEM, pain, fatigue and other symptoms. My PA will make my lunch along with another drink and they’ll also wash some pots and maybe do some other jobs like load the washing machine, make a hot water bottle, and put a drink in a thermal tumbler for me to drink later.

Afternoon

12.30pm: Is when my PA finishes work. After they leave I’m usually feeling exhausted so I take my hot drink and hot water bottle to bed and I put on a podcast or audiobook. Usually I’ll just lay and listen sometimes on my good days I’ll also do something like a jigsaw puzzle on my iPad or some other low-level activity.

1.30-2.30pm: Later I might have some energy for day’s main activity. Depending on what kind of a day I’m having will decide what activity I do, from a lower-energy activity to an activity that will require more energy for me that day, or spoons if you want to use Spoon Theory. Also depending on how much energy or spoons I have and the activity I can usually do an activity for about 20-60 minutes. I have to keep a check on how I’m feeling to ensure I’m not going to overdo it and bring on PEM which is very easy to do.

PEM can be very unpredictable and you never know how bad it will be or how long it will last for. PEM is one of the main symptoms of M.E.

Some of the activities I enjoy doing in an afternoon might include:

• Writing to a pen pal
• Crafting e.g. kits, card making, iris folding, diamond painting, crochet
• Assembling die cut sets onto cards (a nice low-level activity)
• Colouring
• Activity books like sticker-by-numbers 
• Blogging 
• Doing my nails
• Going out for a ride with my Batec on my wheelchair (if it’s a longer day I have with my PA or my Dad is visiting me)
• Put some makeup on

On a really really good day I’ll also do some of my to-do list such as medical admin and other admin tasks such as emails, telephone calls and form filling, I might also do some very basic jobs around my home that are doable for me and leave the more energy zapping or difficult jobs for my PAs or carers, just things like tidying my craft table or over bed table and cleaning it with and antibac wipe. It’s nice on my really really good days to feel like a home owner by doing simple house jobs it also makes me feel more productive and independent too.

If I do an activity I’m usually pretty exhausted with PEM especially if I’ve over done it and often my pain levels flare up too. I also especially get a lot of pain in my legs with my M.E. alongside hip pain due to my EDS. I also often experience headaches and migraines. When I get really exhausted my immune system can flare up too and I can experience flu-like symptoms as well - this is the Malaise which means generally feeling unwell and feeling in discomfort. All these symptoms often require additional pain relief and other medications to help relieve the symptoms as well as the use of other pain and symptom management techniques.

3pm: by about this point (sometimes it’s earlier) I’m in desperate need to just simply rest. I’ll usually close my blinds as the dimmed room helps as the light only adds to my pain. I put in my noise cancelling AirPods to block out background noise as this can exacerbate my symptoms. My profiling bed helps me get as comfortable as possible. I use the app Calm and I put on a soundscape and I just lay in bed and listen to this to rest. 

On my worst days I’m unable to tolerate any noise so I just put in my noise cancelling earbuds and lay in bed to rest. This can be difficult emotionally as I have no distraction from my symptoms and I just have to simply lay in bed. 

I’ve developed a good setup around my bed to have everything I need to hand for occasions when I’m unable to get out of bed.

Depending upon how I’m feeling and if I’m having a good or bad afternoon will determine how long I need to rest for. On a good day I’ll rest for 30-60 minutes on a bad afternoon I’ll rest until my evening carer arrives around 4-5pm

4pm: On a good afternoon afternoon after I’ve rested I’ll listen to something, a book or some podcast episodes and do a low-level activity, or I’ll watch something on my iPad so it’s still restful-ish until my evening PA/carer arrives. 

Evening care

My carers/PAs get to me around 4-5pm(ish)

On a really good day if I haven’t been out earlier I might go out for a ride with my PA on my Batec for about 20 minutes usually around the area where I live.

Once I’m back from my Batec ride or if I haven’t been out I’ll begin my evening care with getting a wash. Sometimes I’ll have a wash at the sink, on not-so-good days I just use Fresh Wipes to wash or Nilaqua waterless foam cleaner. On a bad day and I’m not up for a wash at all I’ll just get into my pjs. In an evening we reapply my barrier creams again. I like to wash as it helps with my sleep time routine; also washing is important when you have barrier creams on your skin as a build up of cream can cause the skin to break down so it’s very important to keep it washed off before reapplying it.

Afterwards my PA/carer will make my tea for me. On my good days I’ll join in and help where I can like if passing things out the fridge and freezer and deciding my portions. My PAs/carers will do other things for me like washing the pots, drying and putting them away, cleaning the kitchen space, preparing my night time and morning drinks, making me a hot water bottle, setting up my night bag, emptying the bins and recycling box, folding laundry or anything else that I need help with.

On my really bad days my carers will let themselves in as I’m unable to get out of bed. If I’m experiencing a crash (when my M.E. symptoms are worse) my carers will ensure they talk quietly and keep conversations to a minimum. They’ll also be careful not to bang my bed or make sudden noises and to be gentle when helping me into my pyjamas. They’ll keep the door shut and keep the noise down in the front room when preparing my tea and doing other jobs. Additional things they do is ensure my pain is managed and give me pain relief if I haven’t been able to take it myself. They’ll also ensure my Hydrant bottle is refilled for me - this is a litre water bottle with a long straw that clips to my pillow, it means I can sip on water and stay hydrated hands free when lifting a water bottle would be a challenge.

5pm: this is when I take my evening medication.

Evening and bedtime routine 

5-6pm(ish): is when my PA/carer leaves depending on when they arrive. I’m usually pretty exhausted afterwards and ready to settle down.

After they leave if I’m feeling up to it (on a good day) I’ll update my bullet journal for the day. Then I’ll brush my teeth. I keep water wipes and travel face products next to my bed so I usually do my evening skincare routine in bed.

On bad days when I can’t get out of bed or I’m already in bed I’ll just be resting washing or listening to something on my iPad. In terms of my personal care I’ll just skip brushing my teeth as much as I dislike it and I’ll also miss out my evening skincare routine too as I just don’t have the energy as I have to prioritise where the last of my my energy goes.

7pm: I’ll get into bed if I’m not already there. Depending on how I’m feeling I’ll maybe watch some easy watching TV show of for a short while. If not I might listen to a book or podcast I might do a jigsaw puzzle on my iPad at the same time or I might just lay and listen if I’m too tired. My symptoms usually gets worse the later it gets in the day.

8.10pm: is when I take my bedtime medication 

8.10pm-10.30pm(ish): I used to always go to bed at 9pm whether I was tired or not but a few months ago I did a sleep session for people with chronic pain and since then I’ve learnt to go to bed when I’m tired so when I go to sleep varies. Sometimes I’m nodding off at 7pm so I’ll go to bed as soon as I’ve taken my bedtime medication other times it’ll be later.

What I find hard to understand is despite really struggling during the day with chronic fatigue is at night I can sometimes struggle with insomnia. My way of trying to understand my sleeplessness is because my body doesn’t have the energy to sleep. I can also struggle to sleep sometimes due to high levels of pain.

9pm: I try to avoid screens before I sleep so I’ll lay and listen to my audiobook or a podcast. Sometimes I read a book but there are times like at the moment where I lose the cognitive function to do things like read a book, but I hope to get back reading soon.

I find it really helpful to have smart lighting so I can adjust to brightness of my lights with my voice or on my phone/iPad I can also turn plug sockets on and off too; I can also have settings such as ‘evening’ or if I say ‘good night’ to my HomePod all the lights and plug sockets turn off around my home - this makes it easier for me and my carers too. 

I sleep with a body pillow around me, it’s nice and comfortable but it also supports my joints as when you sleeps your muscles relax and that’s when my joints can sublux or even dislocate in my sleep.

I aim to get 10 hours of sleep at night and then when I wake I’ll repeat all of this the next day!