I know it's been ages since I've posted properly, but it's not been an easy few weeks.
We think we've worked out why I've been feeling so pants, but it's a bit complicated, and we don't know for sure.
If our suspicions are correct (hopefully they are because I have no idea what else it could be), I'll go into it in more depth then, rather than risk giving false information now.
It’s ME Awareness week from 10th-17-th May, and the chairman of the ME Association, Neil Riley, wrote a message comparing what others see of our illness as “the tip of the iceberg” so, while I play the waiting game, I thought I'd tell you how my average good day looks.
I know I've told you before that I have to rest eight hours a day to function and that I can't do more than a certain amount within my activity times, but it's all a bit abstract so I thought I'd lay it out a bit clearer.
I'll also include some of my other coping mechanisms and tools so you can see how I think about things and manage the tightrope walk a little better.
I'm going to warn you now though, as I do rest a lot, parts of this will seem pretty repetitive, and/or boring. That’s because it is, but unfortunately there’s not really anything I can do about that.
Although I’ve mentioned before that my level is around 15%, that’s within the guidelines for ME sufferers, as judged on the scale included in “Severe ME/CFS: A guide to living" by Emily Collingridge.
In terms of comparing my daily activity with someone healthy at my age, it’s more like 5%.
For example, reading the seven Harry Potter books would have taken me about a week when I was well. I did the same thing recently, but it took me 16 weeks.
Regardless of the ME, I still cried like a baby when Dobby died.
So, without further ado, here is my good day.
I normally wake up between 6.30 and 7.30am.
As a general rule, the later I wake, the better the day will be, because it normally means I've slept more than 8 hours.
I still wake up tired every day no matter how long I’ve slept, but if having ME is like waking up with weights strapped to your limbs and torso (which it is), then the more sleep you have, the fewer weights you have to lug about all day. The weights never go away completely but it does make a difference.
Everything becomes a hundred times more difficult if I've slept less than 8 hours. Nine is infinitely preferable. Ten is basically the Holy Grail.
In the morning, I take a little time to come round properly. Rushing anything is bad because it usually gets too much adrenaline into my system, and that wears me out quicker.
Slow and steady wins the race.
I usually use this time check my emails and indulge my social media addictions for about 10-15 minutes (for me it's pretty much the least tiring activity I can do), before going downstairs, letting the cat out, grabbing some cereal, and heading back to bed to eat and rest.
This takes about half an hour, so I usually rest for an hour at this point. Laying down, eyes closed, no talking, clearing my mind and focusing on my breathing.
If I wake up earlier, I do a bit more web surfing after my first rest, and then rest again. Scintillating, I know.
Once that rest is completed, provided I’ve negotiated a slot with my parents, I head for a wash. The negotiations are often a lot more complicated than they sound given that my stepdad takes longer in the shower that any other human I've ever met.
It's entirely possible he's actually a merman in disguise.
From here the days fall into two categories: shower days and hair days.
I’m not able to wash my hair and shower in the same day, it’s way too tiring, so on one day I’ll shower, and the other I’ll have a wash in the sink and mum washes my hair after.
Raising my arms above my head for any length of time is a no-no so I have to have a hand with my hair.
I know not showering everyday probably sound gross to a lot of people, but when you have limited energy you have to make sacrifices. I’m actually pretty lucky that I can do this much; there are plenty of people who rely on wet wipes.
Showers are still pretty exhausting so I have a bench to sit on during bathing.
I also use a towelling robe/dressing down instead of a regular towel, so I don’t have to use as much energy drying myself off.
It’s not easy for me to admit, but before the Occupational Therapist recommended that tip, my mum used to have dry my arms, legs and back for me while I sat on the toilet lid, because I didn’t have enough energy after a shower to do it myself.
Even with the robe I still have to call her in to dry the lower parts of my legs for me.
Not being able to wash and dry myself completely on my own is pretty much the most humiliating thing that’s ever happened to me. I’m 28, and it makes me feel like a decrepit 90 year old. I still can’t quite believe I’m telling you about it, but if I don’t, how on earth are you ever going to know what it’s like? It's ME awareness week, after all.
Also, doing so stands a chance of helping other people in similar situations (use a towel robe, people!) so I feel like I’m just going to have to taken one for the team on this one.
If I have enough juice left while I wait to dry off, I brush my teeth (I’ll do it later in the day if not).
Electric toothbrushes are an absolute godsend because they do the vast majority of the work for you. If you have a chronic illness and you don’t have an electric toothbrush, I would rectify that asap.
To be fair, even if you don’t they’re a pretty good move from a hygiene/teeth-not-falling-out standpoint.
On a hair wash day, I wash in the sink and call my mum in after to wash my hair. At the moment I sit balanced on the edge of the bath supported by my arms and mum leans over me.
This is pretty lame for both of us, so we’re trying to set up a kitchen sink hose attachment so neither of our backs hurt so much.
UK plumbing being what it is, we’re having trouble finding a hose that’ll go over the mixer tap at the moment.
Another tip I’d recommend is using a natural salt deodorant (although stinky paranoia means I use a normal one if I’m expecting visitors). It works just as well (despite said paranoia), and doesn’t stick to skin or clothes so much, so it makes it a lot easier when you have to wash next time.
It does take a while to dry, but that just means you can lounge around like a swooning Victorian lady, which greatly appeals to my sense of drama.
The wash process takes about 15 minutes, so I then rest for about 30. Laying down, eyes closed, no talking, clearing my mind, and focusing on my breathing.
During this rest I’ll normally listen to my first relaxation track of the day, and I put my SAD lamp on while I do it to try and get some Vitamin Ds.
SAD lamps don’t actually have UV light in them, but they do pep you up quite a bit when it’s grey, so they’re really, really useful when you live in the UK.
This is also around the time Mum will bring me what I call my ‘Vitashake', which is a faux milkshake designed to hide an extremely nasty powder-based supplement I take. More on that joy another time.
It’s clothes time! It only takes five minutes, but you can usually get a fairly good assessment on how I’m feeling based on what clothes I choose.
There’s the good day skinny jeans/skirt and t-shirt combo, the not-quite-so-good t-shirt and leggings combo, the feeling-a-bit-pants t-shirt and pyjama bottoms combo and then full pyjamas.
Every girl reading this knows that there’s also a graded system of underwear that goes:
- Nice bra
- Comfy bra (my usual standard)
- Stretchy yoga bra/top thingy
- No bra (only when I’m not well enough to get out of bed)
You can also tell how bad I’m feeling by the number of grey items I’m wearing.
I have no idea why, but I tend to gravitate towards grey when I feel bad. Presumably, it’s because I feel like this colour best describes my emotional state.
I then lie down and rest for 10 minutes, eyes closed etc. (Sometimes if I have enough juice (or if it’s really cold) I’ll get dressed straight after washing and then I’ll rest for 40 minutes till ten.)
If it's a hair wash day I'll dry my hair at this point and then rest for longer.
Fortunately my wavy/curly hair only requires sitting and hanging my head upside down while I shove a diffuser at it for five minutes, so I can usually do that myself.
Second breakfast time! One part of my ME is that it’s turned my slight hypoglycaemic tendencies into a full case of the hungry faints, so I eat six small meals a day to keep my energy at a stable level.
This is one part of the day that I enjoy because it makes me feel like a Hobbit (minus the hairy feet).
I try to make my meals last at least half an hour where possible (it’s recommended to help nausea and to aid digestion) so I’ll often go back on my phone while I’m eating to try and eek it out a bit, even though you’re not really meant to.
This is actually a sign of improvement for me, because for a long time I couldn’t eat and do another thing at the same time.
If I manage the full half hour, guess what?? I rest for another hour!
This rest time is normally when my stalwart companion, Jessicat Fletcher, will come and jump on my stomach to demand cuddles. Technically I should count those as an activity, but I often don’t because, a. they only last about 3 minutes, and b. cat-cuddles are really relaxing.
I go downstairs at this point, armed with my phone, iPod full of relaxation tracks, and my notebook for writing down my activities and rest periods.
I get myself a glass of water, lie down, on the sofa, cover myself with a duvet, and… oh! ten minutes have passed, so it’s time for another rest before lunch.
Lunch time, and yes, I do really have to eat again this soon. For some reason it takes a long time in the morning for me to build up energy, so I have to eat every two hours. I have a tiny bit more leeway in the afternoon.
I have to sit on the sofa with a tray, because my muscles aren’t strong enough to support me on a straight back chair for long enough; it’s far too tiring.
Eating is one of the only times I sit up for an extended period, so as I improve I’ll have to strengthen my neck muscles before I can travel anywhere in a car or wheelchair.
I can cut up my meat on my own again though! Woooooo!!
Lunch is nice though because my parents come sit with me so we have a chat while we’re eating. Talking while eating is not something I could've manage before (having my parents in the room while eating is not something I could’ve managed either), so hooray!
Again, I’ll try to make it last thirty minutes.
After that… an hour’s rest. Laying down, eyes closed, no talking, clearing my mind and focusing on my breathing. You know the drill.
Afternoon is my favourite time of the day, because it's when I have the most flexibility.
We eat tea at five, so, within the next three and a half hours, I get an hour and ten minutes to do whatever of my manageable activities I want.
Obviously that's split into chunks because I still get tired if I try and do too much at once; two 30 minutes and a 10 (with two 60 minutes and a 20 minute rest), or shorter activity periods if I'm having a worse day.
I tend to do some more relaxation tracks during my afternoon rests, as by this point I'm pretty "clear your mind and focus on your breathing"d out.
If I have appointments, they'll take place during this time, or I might do some online shopping, blog writing, reading or, my newfound hobby, cross stitch.
I've been able to read actual books and even some magazines recently; a massive improvement, as before I could only manage reading on my phone (much lighter and no repetitive page turning).
Magazines are a big deal because of the sheer amount of different kinds of information they contain. I have to read them bit by bit but it's still an achievement!
TV is still a bit much at the moment (with all the noise and movement it's a lot of stimulus to take in), but hopefully that'll improve in time.
Radio is a complete no-no. For some reason I find it waaaaay more tiring than TV. Maybe because there aren't any visual cues?
To be fair one of my main symptoms is noise sensitivity and I also having trouble assimilating auditory stimuli, so that's probably the main thing. A pair of earplugs is never too far away.
I also go out into the garden in the afternoon if I can.
We have a hammock, so it's not a massive change to do my activities and rests in the sunshine as long as I don't overdo it or get too hot, as temperature changes have a negative effect on my energy level. Layers of clothing, duvets and shade are key to handling this.
I'll have a snack at the mid point of the afternoon as well, to keep my blood sugar levels steady.
Tea time, and back to the sofa with a tray. Again, my parents will usually come sit with me and we'll chat while we eat.
Half an hour later... Rest time. Again. For an hour.
The last ten minutes of the day downstairs. I'll usually spend this chatting more to my parents or texting friends.
20 minutes rest.
(Sometimes I skip this step and go straight to bed if I’m extra tired.)
I head up to get ready for bed at seven.
It takes about 15 minutes, and then... I rest again. For thirty minutes.
Mum comes up with a small bowl of cereal to stave off any blood sugar drops during the night.
If you find yourself waking up in the night that's often why it happens.
Me and mum have a last gossip and she toddles off at about 8pm while I rinse my teeth one last time.
And then... this is the only time during the day I don't measure rests!
I know! You were expecting more, but I'm a bit more lenient with myself at this point because I'm about to sleep.
I give myself a whole half hour (gasp!) to read and indulge my social media addictions some more, as I'm normally reading on my phone at this point.
There are plenty of people who’d say it’s a bad idea to use my phone to read in bed and that I should have a book instead, but given that I actually find that more difficult, I’m happy to bend the rules on that one.
Phone off and lights out time.
This is when I actually start my proper wind down process towards sleep. Insomnia has been a real problem for me in the past so it’s taken my a while to find a process that works for me.
I start by doing a round of ’tapping’, or EFT, which is a process of tapping on different meridian points of your body and talking about your worries about sleep. It looks and sounds completely mental, but actually works really well.
Then I lie down and let my mind wander and daydream, to try and get myself into a better, calmer state, followed by relaxing my limbs bit by bit when I feel myself calming.
I finally listen to a final relaxation track designed to help me go to sleep, and then its earplugs in, and (hopefully) off to dreamland.
This process takes around two hours, but can take longer if I’ve overdone it or not rested enough in the day.
Believe it or not, two hours is actually a pretty short amount of time for me to be able to go to sleep; I’ve always found going to sleep tricky and that’s only worsened since I got sick.
I have sleeping tablets to use as a last resort.
And then, after however many hours sleep I can get, it's time to rinse and repeat and do it all again.
And so concludes my good day! I hope it gives you a better insight into my life (and the lives of others like me).
The days don't always run as smoothly as I've written of course; life is not that predictable, so there has to be a certain level of flexibility.
If I don’t manage to get all the rest after washing completed before second breakfast is ready, for example, I’ll have to add what I’ve missed on the end of my next rest. It’s not ideal, but it’s necessary to not feel terrible, so I do it.
Some days I’m absolute pants at clearing my mind and I have to try daydreaming about calm things. Or I’m so frustrated with the whole thing I have to take a break from resting for a minute and go get a drink, or change where I’m resting.
Some days I lose track of how long I've been doing an activity, or how many rests I've had, or I just can't switch off no matter how I try.
But on those days I just have to be a bit kind to myself and realise that I'm not going to do everything perfectly all the time.
It might mean I have to deal with a few bad days as a result, but that's part of the illness.
It's not how I thought I'd be living my life, but as long as I'm doing my best to stick to my regime and get better, then that's enough.
(By the way, I know I've not gone much into the bad days or dealing with symptoms, but that's because I'm not really ready to share that yet.
If you have questions though, feel free to ask me.)
And finally, on a slightly less gruelling note, my cousin Richard has raised £300 for the ME Association so far!!
I'm so grateful for him for running in the BUPA 10K on their behalf (and mine) and to all those that have donated.
The ME Association fights our corner so it means a lot that you've supported them.
If you haven't donated there's still time to do so here.