Twenty-something With Chronic Fatigue Syndrome

I want to make something very clear. This is not a pity party. I am writing in the hopes of increasing understanding for those who can not comprehend what it is like to live with an invisible illness, and to extend my support to those who do understand. I've also started to include some of my mental health posts here as I feel it is the best place for them to go, and I know so many of you will be able to relate.

[20somethingwcfs]

The Circle of Life

The “On This Day” feature of Facebook can be quite a source of unease as we look back at who we once were, but I’ve been finding something quite interesting over this past year. Each time I suffer a fatigue crash, whether large or small, almost every single one is paired with a memory of the past when it happened at the same time. Sometimes one year, sometimes several years in a row. 

Currently I am quite low on energy. I’m doing my best to keep up with the demands of life, but truthfully I am just holding on for Christmas. This weekend I was in bed at a decent hour each night, spent all of Saturday on the couch, aside from my trip to the chiro, and then slept for 11 hours that night. Sunday was spent sleeping in, brunch, grocery run around, and more rest. Oh, and a bubble bath and early to bed. 8.5 hours sleep, and I awoke... exhausted. Again. It’s a rainy spring day and as I crept through the house I was certain I was going to drop at any moment, dizzy and fatigued, and yet I packed my gym gear because you never know. The thing is, sometimes mornings don’t dictate how my day is going to go - I feel like death most mornings so I tend to just get on with it. Often I don’t even know I’m sick until I’ve got to work and realised how I feel is beyond my normal. 

I’m almost at work and my body is drowsy, while my arms ache. Oh, now my legs, but only if I don’t think about them. You know what it’s like - the pain moves, like an unidentified mist, ever evading your focus but always there, somewhere. 

Next year I will dedicate more time to rest. Quarterly at least, even if it is just a few extra long weekends. At least this year I feel less guilt about not being able to keep up with everyone. The important thing is that I am keeping up with myself, and doing more things that make me happy and feeling less guilty about weekends like the one I had in which responsibilities were optional, and the bare minimum was encouraged. What washing pile?

[20somethingwcfs]

Progress, relapse, and more progress...

While this blog is mostly around the challenges of CFS/ME, I have to be honest and open about the fact that I struggle with my mental health, and always have. Even before CFS/ME dictated my life (and before I became its master), I had other struggles. Some of you are more familiar with my journey than others, and I don’t intend on elaborating on it too much. Since I was a child I struggled with depression, later developing into anxiety, and with that groundwork done some events in my life caused me to develop PTSD. I struggled with it all mostly on my own, often putting up a barrier between myself and those around me. I tried seeking help once in my early 20s, which didn’t go as planned. 

I would swing between the strong person I knew I could be, and on the brink of death just waiting for my time to come. I wanted to be strong, and I wanted to be tough, and eventualy all that broke down...and so did I. Since that crash I’ve been through therapy along with medication and would consider myself free of PTSD after a lot of hard fucking work. It hurt like hell, but my goodness how good it felt that moment I realised I wasn’t having nightmares anymore. Bit by bit my anxiety subsided, and I wasn’t crying every day. I started presenting in various meetings at work, and even training people. The scared 12 year old crying and running out of the classroom mid-presentation that I was would not recognise me today, nor would the defiant 14 year old who point blank refused to give a speech. 

Having said all of that, social anxiety still nibbles away at me from time to time. It was so hard for me to join the gym and not feel like everyone was looking at me. I was terrified that someone would come up to me and tell me what I was doing wrong. Or worse, what if they’re filming me or taking photos to post on one of those horrible pages? I’ve been going for a while now, and with some change in diet have lost a good amount of weight, but I often still feel the fear of those watching me no matter what. 

My biggest challenge recently was deciding I wanted to take up yoga as part of my routine to help strengthen my body and provide it some respite. For the record, I don’t do classes unless I know someone who will come with me. I never have, and it scares me senseless. But a few weeks ago, after umming and arring for weeks (because that’s what I do!) I went for it, got there early enough to get a mat at the back of the room so no one could see me, and loved it. I’ve done yoga before, so it’s not totally foreign, but to do it without any human safety net is a great testiment to my progress. Even through the mess of a relapse with depression recently, I somehow managed to beat the monsters in my head and feel the joy of yoga again. 

I also have to mention that my CFS/ME journey has improved greatly with the adoption of a ketogenic diet, in conjunction with my usual supplement routine and strength training. This winter was the easiest one for me yet, and I’ve been doing a weeknight yoga class! Weeknight!!! Sure, it’s only been a couple of weeks now, but this is a huge step forward for me. I just know that my body operates better working with ketones rather than glucose. 

So, even though I am flailing around in yoga at the moment, I’m going to keep at it. I know that if I stick with it my body will become stronger, my mind will relish in the peace it brings, and maybe one day I’ll be the girl who speaks up when the teacher asks if we’d like anything specific added to the class. And when depression comes to stay, I’ll just fold myself into child’s pose until I’m strong enough to stand again. 

[20somethingwcfs]

The pain is creeping back

I’ve often tried to explain the pain I feel from CFS/ME, or perhaps it is a Fibromyalgia cross-over (though that wasn’t included in my official diagnosis, I know it often gets overlooked). The thing about my symptoms is that they tend to be a reaction to the climate; sudden weather changes will always cause pain, regardless of whether it is cold to hot or hot to cold, dry to humid and back again.

We are officially in the handover from Summer to Autumn, and this past week my body has been mourning the loss of the heat. I do so much better in Summer. My mind becomes clearer, the pain infrequent and manageable. The main thing I have to focus on during the warm months is to manage my spoons, social interactions, eat well, and take my pills. As the cool air starts to creep in each night, and some days, I need to make sure I monitor all these things plus ensure I am dressed appropriately, have access to heat packs/hot water bottles, buy shares in epsom salts, rest after doing almost everything, and make no excuses for not being able to do things as quickly. Each year gets a little easier, but at this point in the year I still fear what is to come.

When it started I didn’t get pain, I just had what I thought to be burnout that was managed ok by my generally introverted lifestyle and infrequent outings. I was 22 when it really started to take over my life; a friend thought it was the fault of my boyfriend at the time, which I took on board and used to manage our personal time better yet it just got worse and worse. Soon I couldn’t talk properly, I would randomly have to just sit on the floor and be quiet, and then the pain crept in. I will never forget the first day the pain really took hold. My partner and I were at his cousin’s wedding on New Year's Eve (middle of summer here in Australia) and as evening rolled in a cool (comfortable) breeze trickled through the event, and yet it felt like there was something inside my bones trying to claw its way out of them, scraping at them, pulling at the tendons, destroying me from the inside.

As time went on the pain grew worse, and what I couldn’t understand was that no pain medication actually did anything. As my partner and I continued to research what could be done while I pursued my diagnosis we came to understand the nature of the pain; it wasn’t pain caused by anything in particular, it was my brain basically misreading signals of temperature and touch and telling me that there was something attacking me, and because of this pain medication did nothing other than clog up my bowels and harm my liver. In the early days the pain was so bad I couldn’t sleep, which of course made it worse. The bed felt like concrete, my bones felt like frozen steel being scraped by barbed wire, and I would drug myself with codeine and strong antihistamines just to knock myself out. Each day I was more fatigued than the one before, and weekends were spent sleeping.

The best way I can describe the pain is that I imagine it is exactly how it would feel if someone was to run a butter knife over your bones, just haphazardly choosing places over your body. The sites of pain are always the same, but it moves like a mist. The moment you think you’ve got it under control it reappears in your other arm, then thigh, then knee, clavicle, and suddenly a scraping down your scapular so sharp it takes your breath away. The only certain pattern I have learned is that, for me, it begins with sudden changes in temperature or if I have been ignoring the fatigue alarm (the little screaming voice begging to sit very still in a comfortable room with just the right amount of light and warmth). The other herald are the bruises that appear all over my body, like little fingerprints. Over the last week i’ve counted 8 or so in places I have not hit against anything. They also tend to correspond to my more regular pain points, which I only realised just this very moment.

My management plan is fairly simple and revolves around strict routine. I have a very specific combination of supplements (often increasing magnesium, which I am already double dosing) daily. I must punctuate my calendar with adequate rest; going out on a “school night” doesn’t happen unless it is a special circumstance. Regular bed times are also a must, even if it isn’t super early it needs to be consistent so my body feels safe and has less thinking to do. When the weather cools down epsom salt baths are one of the few things that eases the pain (thank God for our giant bath). Last winter we invested in a shower hose to attach to the bath faucet so I could wash my hair in the bath when I was in too much pain and too exhausted to stand in the shower. Often my husband joins me either in the bath or sitting in the bathroom with me just to ease the loneliness that can come from this life. Hot water bottles and heat packs are next; the more the merrier as you can combat multiple pain sites at one time. Lastly, layers of clothes and blankets, especially in winter. If i can follow this then I can function ok. Sometimes, such as in summer, I don’t need it all, but in the cooler months this is all a must to get me through the day.

Then there are the days where none of this is enough. Last winter I had a day where I was in so much pain and fog that I broke down at work sobbing uncontrollably and was sent home. Yes, I am one of the “lucky” ones who still manages to work. I do so out of necessity; I would love to not have to, but that is life. I have made my peace with it and now simply arm myself for war, knowing that if I can make it from March to September without too many incidents I will be able to enjoy the other half of the year.

Last night I stocked up on epsom salts and sat in the bath for as long as possible, slowly leaning forward falling asleep, easing my body. Though it was a hot night I armed myself with hot water bottles and climbed into bed willing the pain to go away. It definitely took longer than usual to get to sleep due to the pain. I awoke to more pain, so I know this will be another difficult day. Onwards I go with sunshine at the end of this frosty tunnel.

Rest soon.

[howilearnedtocope]

hope with chronic illness is not thinking you will magically recover, or that you will have a certain level of ability in the future. hope with chronic illness is believing that no matter what your illness throws on you, your life will be worth living 

[cascadian-dumpster-water-deacti]

Saw this design floating around. Just had to make it.

[chronicillnessmemes]

[image of a person turned away from the camera, wearing a leather vest with the words “No more spoons, only knives left”, on it, with several images of knives]

[20somethingwcfs]

I need this.

[20somethingwcfs]

Since there is so little research into CFS/ME we have to take matters into our own hands. This is my morning batch of supplements, which will be followed at night with more magnesium and my (non SSRI) antidepressant. I have been struggling financially and recently ran out of some of these for a few weeks, so I was down to the bare essentials just to get by. My immune system crashed and in the space of 3 weeks I had a moderate fatigue crash (bed bound for a 3 day weekend), followed by vertigo, followed by a major viral attack causing both the flu and gastro so bad that I ended up in hospital as I was unable to travel home from work. Yes, I still manage to work. Financially, I have no other option. My work suffers when my body gives out like this and I live in constant fear of being let go, even with an incredibly understanding boss. This is my life. This is our life.

[20somethingwcfs]

Alternate realities | The Black Dog

I don’t believe I’ve touched on it too much on this blog, but in addition to CFS/ME I’ve got some relatively heavy mental health issues following my trail. Although I am probably now in the category of “stable” in that department, today is one of those days where there is a shift in my reality and I find myself at the hands of the dark gatekeepers. I thought it worth sharing what my experience is like, as I know there are so many of you out there who feel the same (or similar, since all our circumstances and experiences are unique). 

Today is not a spiral, nor is it something I am too concerned about in the grand scheme of my mental health. having said that, I don’t feel good. I don’t feel my special brand of “normal”, and I am struggling to feel much. I am medicated (valdoxan, for those of you who are interested), along with supplements for my CFS/ME and Pyrolles. I’m certain all that magnesium helps support my mind. I also came to the end of 18 months worth of therapy last December. The next stage will be couples therapy for my husband and I, and then perhaps I’ll go back to one on one, or maybe I will see how I go without it. 

My official diagnosis, in terms of mental health concerns, is Major Depression, Generalised Anxiety Disorder (GAD), and PTSD. My world fell to shit in 2015, after a steady decline that probably lasted 12 months, leading to me having somewhat of a breakdown. This time, though, I was prepared to do whatever it took. I ate my humble pie and knew that I needed help getting out of the hole I was in. To put it into perspective, I believe I’ve always had depression. My earliest memory of it is praying that I would not wake up and asking God to take me home when I was about 9 or 10. So when I say I’m not concerned about today, I know what I’m talking about. 

The thing about mental health is that you can be considered stable but still have bad days. Everyone has a bad day ever now and then, they just say they “got out of the wrong side of the bed this morning”. Those days where you can’t pinpoint exactly why, but you just don’t feel right. That is my day today, but I can pinpoint why. 

This morning, I feel like I am living two realities. It’s kind of like mild PTSD; my mind is telling me I am living one reality, when my body is trying to tell me I’m not there anymore. Surprisingly, it has nothing to do with the main reason for my PTSD. I’ve been really sick lately and my body and mind are weak, plus I’ve missed a bit of work here and there so I’m a little behind. I fear being seen as weak at work, so when I am sick and slow I amplify the consequences in my mind and distrust almost everyone, even those who I normally consider “safe”. The good thing is my psychologist did a really good job with me and I am able to work through all these thoughts and feelings. It’s just hard to do that and live a regular life at the same time. So, as I sit here on the train I am also challenging every single thought that comes my way. It is exhausting, and I am still not feeling anything. Maybe in a few hours I will turn around and realise that I’m doing better than I was a few hours ago. Besides, sometimes apathy is better than anxiety and fear. 

So, why am I sharing this with you? Mostly for me, because I find when I can get it all out I can feel a change start to happen. The other reason is that I know a lot of people go through these feelings, and quite a few can feel ashamed of these feelings because of that old chestnut “what do I have to be depressed about?”. Then there are those of you who just still don’t get it, so I hope this opens your mind a little. 

Off to work now. I’ll be ok soon.

[20somethingwcfs]

Poster child for ME/CFS | 11hrs sleep, 2hrs to function, 2hrs functioning like a normal person, 1hr declining, and then back to bed | Eyes watering so much my makeup is gone and I have to wipe the constant stream of tears | Appetite is lacking, so my one meal of the day was shared with my other half, and I have no hunger hours later | Headache and nausea | Physically and visually sensitive to input | But my mind is alert, so here I rest watching the light on the palms outside my window slowly transition, move, and fade |

[thischroniclife]

My new response to being asked “What happened?”...

[chronicillnessmemes]

[Images are two gifs of princess bubblegum. In the first she says “People get built different” and in the second. “We don’t need to figure it out. We just need to respect it.”]

[20somethingwcfs]

This. My God, this.

[eenymeenypia]

CFS a Haiku

I have three levels:

crap on toast, shit on a stick

death on a platter

[20somethingwcfs]

Yasss

[lovepotsie]

How A Spoonie Says “I love you”

- “Thank you for your help.”

- “I can help, my pain isn’t bad right now.”

- “Do you want me to do that for you?  I’ve got the energy right now.”

- “Nah, I’m not that tired yet.  We can walk around for a while longer.”

- “My pain is manageable right now, I can keep going.”

- “Oh, I wrote that down so I wouldn’t forget it.”

- “I made sure I remembered that.”

- “Are you sure you’re okay?”

- “I’m not too tired yet, I can stay up and talk a while longer.”

- “I can finish what I was doing later, I can help you with this now.”

Please, feel free to add how you say “I love you”!

[awildsnail]

ahhhh this is so good

[20somethingwcfs]

<3

[20somethingwcfs]

Person: Wait you're STILL sick?

Me: *throws a dictionary at their face with the word chronic highlighted*

[20somethingwcfs]

Me: *does anything*

Joints: first of all, how dare you

[20somethingwcfs]

Chronic Fatigue Syndrome is...

Deciding to leave your hair in braids for four days because you are too exhausted to wash your hair. Getting a hose to attach to the tap in the bath so you can have an Epsom salt soak for your pain and wash your hair at the same time. Seeing the sadness in your husband's eyes as you stumble but continue to push yourself. Not realising you have a common cold virus until you are very ill because pain and malaise is your normal. Not being able to express yourself clearly with words and resorting to semi mime. Mental health declining as you feel a glass case slowly separate you from the world. Being unable to sort through the auditory noise of everyday life and becoming frozen in place. Not wanting to be different and pushing yourself far further than you should. Carrying guilt for wanting to just pause the world for a few days. Curling up in a ball watching the world around you, because your body is sleeping but your brain is awake. Not being able to sleep from the pain of your body pressing into the mattress. Heartbreak at believing you could be so much more than what you are if your body would just cooperate. Present to short term memory transference issues, so you can't even remember if you are wearing underwear, what you were just doing, if you've eaten, what you just said. Brain fog so thick you can't remember how to spell the most basic words or understand the most basic concepts. Often forgetting how to spell your own name or your own phone number, and losing focus mid conversation. Losing some friendships, but strengthening others on the basis of those who "get it" and those who don't, and won't. Learning to be ok with your own company. Learning to trust fall into acceptance, without totally giving over to the beast. Refusing to become incapacitated, despite how much you want to just lay down forever. Learning that even the bravest warrior takes time off. Two steps forward, two steps back... And a nap.

[20somethingwcfs]

Fading days

It's amazing how determined one can be to push through despite how debilitating #cfs can be. I know I am one of the lucky ones; I manage to maintain a full time job with a boss who is pretty understanding, and I rarely take a day off. Just because I don't doesn't mean I shouldn't though. Today I am fatigued more than usual. Enough, in fact, that people are asking of I'm alright. I keep getting those cool shudders you feel as the colour drains from your face just before you collapse. Yet somehow I am still here. I am thinking slowly, dragging myself through the fog as I continue to get distracted so easily. I hate this feeling. I am smart damnit, I just want my body to allow me to prove it. I've been in pain on and off for the past few days, ever since the cooler weather came back for it's final death rattle. Last night I took a bath simply because sitting and laying hurt too much. I really need to ask for time to rest and take care of myself, but how can I do that with such a small team and a fear of letting people down. I know the longer I push this the more likely my mental health is to decline, yet it is such a battle to just wave the white flag and say "I'm sorry, but I am struggling and I need someone else to take care of things". I know so many others are bed bound, and I've been close to this myself. I am grateful that I can have a semi normal life, but my God it is terrifying being trapped in this limbo land where one day you're ok, and the next you almost pass out doing the groceries. I'm fading out to grey today, but I'll drag myself through and ask for help. I can't keep going like this or the crash will be catastrophic.

[20somethingwcfs]

Self Care

Most people close to me know that I am very serious about self care. I am quick to prescribe it for all manner of ailments such as depression, anxiety, the flu, various aches and pains, heartbreak, and tiredness. The thing is, I’m not so great at taking my own medicine. I am able to grasp the concept of a bubble bath here and there and some indulgent tv watching, but serious self care is something I just struggle with. 

Having CFS/ME means that I need to be serious about self care. I need to relinquish control of everything and just accept that I can’t physically keep up with the rest of the world. I can’t keep up with the demands of traditional friendships and family responsibilities and have to carve my own way of functioning with external parties. I do everything I can just to drag myself to work each day despite the fact that I feel like an alien and I don’t belong in this world of pushing one’s self to the limit. I get paranoid and anxious that people think I don’t deserve my job and that I’m no good at it. Whenever people are meeting behind closed doors I think they are talking about me and how bad I am at my job. I make mistakes when I am not well, and because of that I need to focus on self care and make it part of my routine. 

Recently I sent out a post on facebook letting everyone know I am not doing well and to not take offence if I decline any social invitations for an undisclosed period of time. This is part 1 of my strategy in combating my resistance to self care. I’ve put it out there and let people know that I can’t keep up, which hopefully means people are less likely to invite me out (respectfully) and those who do should be unlikely to take offence to me declining their invitation. Unfortunately there are some events and some people who can not be avoided. For example, last weekend I was a wreck. Breaking point was so close and I spent 5 hours crying in bed after a driving lesson. My husband had to carry me to bed because I couldn’t walk on my own and struggle with the fact that I had lost the ability to transfer words from my brain to my mouth (I couldn’t speak). The next day was my niece’s 3rd birthday party and also my MIL’s birthday, and I was asked to bake a cake for my MIL. I used the energy I gained from my 5 hour confinement to bake the cake, and resolved to take the next day as easy as possible. My niece’s birthday party went without a hitch (as far as a 3 year old party can), and off we went to the MIL’s party. We pulled up out the front and I was not doing well, but I pushed it aside. I knew I was in trouble when my husband handed me the birthday cake and I almost crumbled to the ground from the weight. By the time we reached the front door I had also reached breaking point. My FIL noticed I was struggling and said I looked like I had a headache, to which I replied I thought I was about to pass out. All of a sudden I had to race to a couch and burst into tears as I felt myself crumbling like a poorly built wall. I was moved to the spare room to recover, and I have no idea how long I was there. At some point I pulled myself out to the gathering and sat in front of the fire. And that was my weekend. I went home and curled in a ball so depressed at what my life has become. 

The following week wasn’t much better. I pretended to be normal through work, but really struggled to keep up. On Thursday I had a freak accident where my neck cracked and I suddenly had intense pressure at the base of my skull and couldn’t talk, see properly, or walk on my own. I was sent home in a taxi and haven’t been to work since. Friday was spent in bed moving as little as possible as my neck was in pain and kept creaking and crackling, even when I was stationary. 

So here I am today, Saturday. It’s a long weekend here which means I am left with 3 days of personal time. My husband has gone out on my instruction so he doesn’t feel trapped in my world, and I am under his instruction to do nothing. It is time for self care, and yet this pit of anxiety and guilt is rising from my stomach up to my throat and my heart is pounding. I feel guilty that I am sitting here in my bed again with the world happening outside. My cat is curled up peacefully next to me as if instructing me on how I should be acting. So, what do I do with this time? I can’t do anything physical in case I put my neck out again (It’s only feeling better now after two days of rest), and even if my neck was ok I still have Chronic Fatigue Syndrome. It’s not going away anytime soon. This is my life and I can’t escape the reality. I have to come to terms with the fact that I am going to spend a lot of my time in this bed. I’d like to sit outside in the sunshine, but the air is so crisp now that it is officially winter, and when the air is crisp my skin thinks I am under attack and tells my brain to send pain signals rather than goosebumps. So what am I to do? I could colour in the adult colouring book I was gifted for my birthday, which sounds nice. I could watch more tv, which also sounds good. I could study, which I really should. There are a lot of things I could do and yet they all fill me with guilt at not going out and being a normal 20something married woman. I should clean the house, I should do the groceries, I should hurry up and get my licence, I should visit my family, I should go to the gym, I should talk for hours on the phone to my friends, I should offer to babysit, I should, I should, I should. This society takes no value in self care, and I don’t think it ever did. Those of us who suffer behind a screen, whether through an invisible illness or mental illness, must live dual lives which provides little time to care for ourselves and so when it comes time to actually having this time to ourselves we tend to mismanage our time and blow it all doing something we only half enjoy because we can’t decide what to dedicate ourselves to as, through our time of just getting by, we have an extensive list of things we’d love to do and a multitude of half started projects that are crying to be finished. 

A quick google search brings up a multitude of articles about self care, how valuable it is, and offer suggestions on things that will help the individual to practice self care. Some of us are in jobs that can lead to burn out which require us to take self care seriously. Some people are extroverts who thrive on the energy of others which makes the traditional list of self care suggestions counter productive, while the rest of us are introverts who revel in the silence of our sacred spaces and benefit from the lists of meditation, aromatherapy, and yoga sessions. What we need to understand is that self care is all about tapping into a personal reservoir of energy and inner peace and as such is a personal journey. There is no finite list of activities that classify an event of self care has taken place, it’s all about knowing what the individual needs. This being said,  there is nothing wrong with sharing ideas with each other to learn what works and what doesn’t. Self care for my husband is creating music, loudly. Self care for me is creating something quietly, or observing the world quietly. My method gives me energy and inspiration, while his saps me of energy and vice versa. Occasionally we find something we can both share, but it completely ok that often we do these things independently.  

Interestingly, as I reach this point in the page I realise writing is part of my self care. I suddenly have no anxiety and have gained some energy, yet a conversation on this subject matter surely would have drained me. So, as I mull things over I realise there are certain levels of self care activities dependant on where I am on the scale of fatigue, both emotionally and physically. 

When my energy is on 5% or lower:

Stop everything, curl up in a ball and rest

Bubble bath, epsom salts (especially if in pain)

Toilet break 

Cuddle someone close to me (husband, friend, family member, pet) and cry (let it out, it feels gooood)

When I feel the familiar hum and buzz of my energy being sapped due to overstimulation:

Put my headphones on and block everything out with music that I know well (because it is familiar to me it is calming)

If able, find a quiet place to retreat to for 10 minutes of absolute nothingness

Choose a piece of fruit and slowly chop it up into pieces, removing any parts I can’t/don’t eat. This is surprisingly therapeutic.

Find a menial task such as laminating, scanning, collating documents, filing emails etc.  

Find a place in nature, preferably in the sun, sit and be peaceful

When I have low mental and physical energy:

Lay in bed observing the outdoors, maybe texting a friend who gives energy through their love and care, or listen to some of my favourite music

Watch something on TV (easier to do on grim weather days)

Watch my husband play video games or have him show me amusing things on the internet while cuddled up to him

When my body is gone, but my mind is awake:

Write, a story or a blog

Watch a documentary to feed the brain

Listen to music and hum along to it. Even if my mouth can’t keep up with the words I can learn the music and humming has this amazing power of waking a little fire inside. 

Sit on my perch in the kitchen and instruct my husband how to cook dinner (It helps feeling like I can contribute)

Have my husband take me on a drive somewhere in nature, maybe having lunch somewhere peaceful

Light my oil burner with some aromatherapy oils (rose geranium is my favourite)

When I’m on 50%:

Colour in/draw/be creative in some way

Cook a meal, maybe something new if I am mentally ok

Join in with my husband playing childish video games

Go for a little walk somewhere (moving feels good, even if I can’t keep up with healthy people)

When my body is stronger but my mind is gone:

Yoga or any other exercise I think I can maintain

Simple housework tasks (again, feeling like I can contribute really helps)

When I’m actually doing ok, but know I need to take time out to maintain this:

One on one catch ups with close, understanding friends

Little dates with my husband

Exercise, but not pushing my luck. Swimming is a favourite for me.

Things I need to do on a daily basis, no matter what level I’m at:

Take all my vitamins/supplements at the right time

Drink loads of water, paced throughout the day

Eat well, eat regularly

Acknowledge and express how I am feeling, even if it is only to one person

Little personal routines, such as doing my makeup and hair. I know it sounds shallow, but often this ritual is all that gets me motivated and feeling human. I know it is a mask of health, but sometimes I just need it to stop myself despairing. 

So, here I am sitting in bed having gone over my plan for self care and realising I am alone (aside from the pets), and I think it is time to colour in. I feel OK physically and mentally, but also know this is from almost 48 hours of bed rest (with some short bursts of physical activity in between). This is my life, and I have to learn to work with it. 

[littlespoonielilybulle-deactiva]

It’s, basically, when I’ve no spoon left.