Observations on ME

Edit: Over 90 posts for the #May12BlogBomb, wow! sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html

Observing ME from the inside and from the outside can tell very different stories. As a sufferer or carer you are acutely aware of every limitation, every pain. Many of us take great efforts to lie to ourselves about the true severity, but when it comes down to it you can’t avoid facing the limitations faced on your life. If you’re simply too ill to dress yourself, you can learn to appreciate the loungewear you’ve been in for the last week but you can’t convince yourself you were able to get dressed.

As a friend or acquaintance, you don’t see that side. On the torturous days when the sufferer wonders if they will even make it to the next morning, the outsider can only see their absense. There is no way to tell just from that the severity of the reason for it. On the days when the sufferer is as good as possible – perhaps they make it to work, or they are able to sit up and feed themselves, or able to tolerate a moments touch – the outsider can only see what they are managing in that moment. One who isn’t there all the time doesn’t see what’s going on all the time.

That’s why what’s portrayed in those surface glimpses gives such a wrong impression of what’s really going on. I only know that those around me who are suffering are truly in such bad states because I’ve been there myself. I may only speak to them rarely, and always when they are well enough for that, so I don’t see what they are really going through. I see just that but I can’t deny the reality of how awful their situation is – because I know what it’s truly like, I’ve been there. But for those on the outside, those without that intimate knowledge, what impression do they get? When you think of it like that, it’s easy to see how people jump to wrong conclusions.

They can’t know how much payback will occur from such ‘simple’ actions, how much careful planning has been expended for the possibility of flicking through a magazine. One who hasn’t seen it rarely dares to imagine the true state of a life with ME.

That’s why the job of telling people, of raising awareness is utterly vital – why those who are campaigning the best they can to let people know about this awful disease are doing such an important thing.

May 12 Blog Bomb

This post was written as part of the #May12BlogBomb for ME awareness. In tomorrow’s post I’ll start exploring some of the major reasons why those who are raising awareness are doing such a fantastic thing, but for now why don’t you join in: read about it here: sallyjustme.blogspot.com.au/2014/04/may-12-blog-bomb.html, or write your own post with the hashtag #May12BlogBomb.


Being there

This post is part of the ME Awareness Week Synchroblog, hosted today at https://dearlittledisease.jux.com/1225844 with the topic “Being a good family/friend/carer”. To join in, head over and post a link or comment (click the little speech bubble in the top right hand corner). 

I think the essence of being there for someone is just that, being there. We lose it in the cacophony of modern life; somehow interpret being there as doing something important, fixing something broken, thinking about the person who needs us there… but not actually being there. It has been said that the measure of love is what you spend your time on, and I agree.

Is “thinking of you” being there? Is “too busy” being there? No. We know what being there for someone means, if we took time to think about it. We know what it would mean to us if nobody was there when we needed them.

Being there is listening in the long silences where our hearts are broken and we have nothing left to pour out.

Being there is laughing alongside each other til our sides ache in a way they usually don’t.

Being there is picking up the phone and calling someone who might need you, just because you care.

Being there is daring to share your own pain with someone who shared theirs with you; to not count them too fragile to count as a real person.

Being there is taking the time to understand someone who is in a place you’ve never encountered.

Being there is visiting someone who’s somewhere you’d rather not go, because they can’t leave.

Being there is treating someone like a person just because they are a person, treating them like you would want to be treated because it could be you.

Being there is what makes the difference, time and again, between someone unable to go on and someone enduring the pain for the hope of a better tomorrow.

Me Awareness Synchroblog

ME Awareness Day

Okay, lets try this post again, now that my brain is slightly less like a marshmallow:

I know I haven’t finished the “week” yet, but (ironically) I’m not up to writing that much right now. I’d written ahead to Friday before the Neuro appt, but the Saturday one is untouched as of yet. Hands and head don’t have enough energy between them to manage what I want to say. I will put it up eventually though; it might not be ME awareness week anymore, but ME is still there :(

So – awareness. I hope anyone that’s read even a single post has got the idea of what it’s like to live with this disease. It’s comparable to cancer or AIDS; in some cases it’s worse. And it isn’t rare. Approximately 1 in 250 people will get it. Right now, it’s estimated that there are around 250,000 sufferers in the UK – 10% of them are children. 20% are lucky; they’ll get better. The younger you are, the faster you’re diagnosed, the more you rest – these all contribute to being able to recover. Another 20% will deteriorate, eventually dying of malnutrition or organ failure. The remaining 60% never recover, they just learn to live with it, for their significantly-shortened lifespan (on average, we’ll die 20 years early). It’s not a great prognosis.

What’s worse, is most doctors haven’t heard of it, or “don’t believe” in it. Patients are usually told to think positively and exercise: the first does nothing, the second could kill them. Those that do “believe” often misdiagnose patients: thousands upon thousands suffering endlessly with a treatable or even curable illness, because they were never tested properly.

For ME, there’s no treatment. There’s no cure. There’s barely any scientific research or funding.

I’ve been kinda overwhelmed by the responses to what I’ve written so far. I didn’t realise beforehand how little people knew about how ill I was – I guess it shows how little awareness there is. Anyway, thank you to everyone who has messaged me and especially those wanting to visit! ME is a lonely illness to have, I really do appreciate all the time I have with people.

I wanted to raise awareness in general, about how serious a disease it is, and how it’s a real, physical and tormenting thing – it’s not people being lazy, or feeling a wee bit tired. I know I haven’t covered half of the symptoms, but I’m so, so glad that this has impacted people to understand what it’s like to be living with. Unexpectedly, God’s been using it to raise awareness among people we know of how we have to live now, and how much help we need. So, yay! I didn’t expect to get so many views or so much feedback. I’m really happy about this week and what I’ve managed to do – all lying down in bed, crazy! Thank you God.

Oh, for those who have mentioned their love of Tibby, he has a photo/video blog at http://lordtiberius.blog.com


Had a neurologist appointment yesterday; she was fantastic. Listened to what I said and very thorough; she said it does sound like ME but she wants to test for some other things as well (pretty sure that at least one of them is treatable so yaaay, here’s hoping!!) Thanks everyone who was praying about it :) also get referred to physio.

Not overly knackered (I guess I can describe it now as maybe a Tuesday/Wednesday day?) from it but woops, my fingers are in pain. Too much typing… who, me? Probably not going to manage Saturday’s post for a bit. I’ll put it up though, even if it’s a day or so late. I’m going to go rest them on something warm again, see if it helps.

No more typing now. Night night!


When G gets up for work, I manage to coherently discuss the plausible locations of his uniform, and point out his unwarranted beard. I’m shuffling to the bathroom in a way I would describe as “normal” now – although that definition is highly debateable. It only requires minimal assistance from nearby walls and furniture, and my balance is no longer quite so elusive. Progress is slow, but at least 10% of that is the cat’s insistence on sitting down precicely where I intend to put my foot, coupled with my inability to lift it high enough or far enough to get over him. This morning, I feed him, then we go back to bed.

I wake up just before one, feeling amazing. There’s no flueyness in my head, and when I turn the (admittedly dim) light on my eyes don’t start screaming at me to make it stop. The pain in my muscles has reduced itself to a perfectly bearable level; my headache likewise I would merely classify as an irritation. The recovery from Sunday’s escapade seems complete. I feel… normal. I’m sure my legs could manage a dance or two, a jaunt down the stairs and to the shops. I feel tired, but it’s just one-all-nighter-tired; people deal with this all the time. Maybe I’m getting better. Maybe I am better.

By the time I reach the kitchen, my feelings of normality are crushed; I shuffle all the way and my legs are tired by the time I’m there. I feed Tibby and make a cup of tea, then make another one remembering to actually boil the kettle first this time. My sudden burst of energy is celebrated by microwaving myself something hot to eat, then munching it in the living room while the cat plays in the sunshine. I switch on the fan and use it to blow bubbles for him, laughing as he leaps up to burst them. The endless movement of the bubble-wand (into the pot, out of the pot) tires my hands out, so he only gets a few minutes. We go back to bed, and I do my usual internet stuff with him curled up on my chest, doing his best to interfere.

I manage to concentrate better on the forum postings today, but that tires my brain out faster so we have a doze. When I wake up, I smuggle the wool-bag under the duvet while the kitten isn’t looking, and do some crochet. I’m actually pretty amazed that I can do it while watching TV shows; multi-tasking is not dead! It tires my arms out pretty fast but I enjoy it too much to stop when I should. A small, fluffy ninja sneaks a ball of wool away while I’m not looking, and liberally applies it to the bedroom floor. Not impressed. The cat is sternly reprimanded, but not before I sneak a few photos of him looking adorably guilty in the middle of the blue-spaghetti frenzy.

Twenty minutes of crochet brings back the flueyness, prompting me to abandon it shortly after and return the bag to a safe and kitten-free location. Usually I would persevere against all reasoanble advice, but I don’t want to push myself too much. I have plans!

I’m super-excited, because someone is coming to visit tomorrow. I can go for more than a month without seeing anybody except G, so two social events in one week is amazing! (I also get super-excited about receiving letters and emails, and whenever G buys me sweets or ice-cream: life is slow.) I used to put more effort into tidying up beforehand, but I’ve grown slightly more sensible than that now. G is also getting pretty good at keeping the living-room in a reasonable state, and I’ve stopped caring so much about the bombsite where our kitchen used to be found. Still, I give a cursory glance at the area to ensure no disasterous mouldy mugs or escaped-cat-litter. I remove my lunch stuff: safe!

There’s a part of me that stubbornly insists that nothing’s wrong, and I can do anything I want if I just put my mind to it. When I’m in payback mode (or whatever it’s called: Post Exertional Malaise; Post Exertional Fatigue; Post Exertional Neuro-Immune Exhaustion; I-really-shouldn’t-have-done-that-yesterday…) it’s not there at all, but on days like today it’s hard to ignore. Compared to where I could be, it’s heaven. Compared to where I have been, it’s nothing at all; I could kid myself that I’m just fighting off the flu and I’ll be all better by tomorrow. Humans have an amazing ability to acclimitise to almost any situation, and think that it’s “just how things are”. It’s only when I compare my life to what other people think of as normal, that I realise my “normal” doesn’t nearly match up. I just have to try sitting up for a while, to realise that there’s maybe something wrong.

Days like today are brilliant. Days like today could almost make me forget how sick I actually am. I think that I feel well; and if I don’t do anything ridiculously exertional (don’t sit up, wash myself, cook, walk, read, wash dishes, do laundry, tidy up, clean the litter tray, expose myself to light, play games, listen to music, go outside, get dressed….) I can keep the charade up for days, even weeks. As long as I don’t question why I can’t carry two cups of tea, I feel normal. Well, maybe a bit achey from everything I did yesterday; I’m sure it will pass.

That’s part of the problem; as long as I play it safe, I don’t think of myself as ill. But eventually I have to do something out of my league, just to survive, and it all crashes down. When I’m careful, most of my days are like today – but I can’t keep it up forever.

I feel like I could maybe handle more crochet, but I don’t want to exhaust myself before tomorrow so I go back to bed and rest some more. When G gets in he runs me a bath; I add lots of oil, my pathetic attempt to displace my inability to wash. Thank you that I can still stand to wear deoderant and perfume. I get in and relax, my mucles releasing aches I didn’t realise I had. I glance at my legs and instantly feel like I’m masquerading as a yeti. At least I’m not as furry as the cat! G has put a chair next to the tub with the towelling robe on; Tibby curls up on it and stares in fascination at the intriguing water. I chat happily to Tibby and he ignores me in a cat-like fashion, so I flick water in the air for his entertainment. G comes and talks to me for a bit, then rinses my hair and washes it with some bicarb-and-water. I used to have to wash my hair every day to prevent grease-overload, but last time I washed it myself I couldn’t use my arms for a week. Fulfilling my daily shampoo and condiitoner ritual is too much to ask of any man, so I decided to take advantage of my inability and try out the “no shampoo” thing. Sodium bicarbinate or vinegar both do as good a job of cleaning as any shampoo, but I still wind up with a grease-bomb on the intervening weeks. Hopefully one day I’ll look like I actually clean it.

The chair is not just for Tibby’s benefit; it means on a good day I can get out of the bath by myself. I rudely displace the cat, and pull myself up on to the edge of the tub. All the benefits of the heat on my muscles are swiftly undone as my weight pulls me down, trying to keep me in the water. I heave myself again, into the chair this time, and rest for a minute or so. Victory! I lean my arms back to try to get the dressing gown on without getting up, but it’s a futile struggle that only results in more joint pain. I get up, put it on, and sit back down, then wrap my hair in a towel and shuffle through to the bedroom.

Tonight, I succeed in my attempts at making dinner, sitting down and entertaining Tibby with a feather-on-a-stick while the microwave does the work for me. G carries the food through on my behalf, of course. After dinner I lie back down and spend a while chatting on msn, Tibby bouncing around the room like a mad thing, making me laugh. Normal bedtime; normal insomnia; normal sleep.


creep… bounce! creep… bounce! creep… creep… bounce! bounce! bounce!

I let out a hngnghhh as he lands smack-bang in the middle of my stomach.


“Come on hyper-cat: Through to the other room.”

G comes back through and I doze off as we snuggle. I’m woken again by him getting up.

“Whrs my cdl?”

“I’ve been cuddling you for the last two hours!”

“…dnt rmembr.”

“You were asleep”

He frees the fluffy menace and starts up a game on the computer; I watch him play through sleepy eyes. It feels like I’ve just pulled two all-nighters on a project; that overwhelming exhaustion you get, seeping down from your head into your bones. G’s suddenly not at the computer anymore; the microwave just went off, so I figure it must be lunch-time. The screen is burning my eyes, so I put on my blindfold and roll over. I hear G come back, apparently just in time to save me from a fierce lion attack.

“Thsis your bdinfluence, hsmuch better behaved whnyou’re atwrk.” The food smells gooood. I drift back off.

The computer shutting down wakes me up again. G comes over for a cuddle, which turns into a fierce battle with the still-hyperactive cat. Apparently, it’s half past two. I still feel nauseous from yesterday (combine this with ME’s effect on periods and hormones in general to get the perfect recipe for constant-pregnancy-scares) so I request some lunch. More energy is expended trying to protect it from the cat than in actually eating it – he found out about margarine, and is now obsessed with stealing bread in the hopes that it comes lathered in the stuff.

I check email, comics, forum, and spend the rest of the afternoon lying down, sunglasses on, watching internet TV. My back is sore from sitting up yesterday. The streamed shows really tire me out, but I can’t face doing nothing for another day; I’d rather be exhausted and actually have something to occupy my mind. As well as documentaries, I like some comedies, and a few crime dramas – I haven’t quite sunk to reality TV yet, but we’re getting there. I never used to watch that much tele, actually – I would read books upon books, maybe several a week. I’ve been engaged in my current reading matter for two or three months though; I can only take in a few pages at a time before it doesn’t make sense anymore and the paperback is too heavy for me to be holding up, anyway. I might progress better with something a little less wordy, but we’re getting there. On good days, I spend far too much time translating what the abstracts of scientific papers mean so that other people with this can understand them. I usually manage one every couple of weeks.

What else did I used to do? Video games – I remember being able to play something for a whole day, but now half an hour gives me a blinding headache and longer than that knocks me out for a good while. Even the Sims seems a little challenging for my level. I liked Warhammer and tabletop RPGs – I used to be a Dungeon Master but I don’t think I could manage one character safely any more, let alone the whole game! Tactical things like that are just totally beyond me – my mind fogs up and gets rid of any hope of focusing. I occasionally play board games with G’s friends, but it makes me feel fluey and leaden, and I can’t function the next day. I miss all the things I used to do. Now I spend my time browsing the net aimlessly, watching mindless TV and chatting to the few people who still go on MSN. Anything that engages my mind just drains it, sucking out the power from my half-charged brain-cells like an old smartphone with GPS left on.

I’ve taken up new hobbies though! TV; the forum; writing a blog. I learned to knit and crochet too – I can do it lying down, although too much or too often is still a killer. I feel useful again, making baby clothes for the endless supply of adorable sprogs produced by our church. They’re so small and sweet, and the clothes are much more manageable to produce – it would take forever to make something for me to wear, but a baby hat can be done in a few days. I love the bright colours, the cute designs, the miniature items you end up with and the smiling gurglers that wear them! There are a few people who exchange e-mails and letters with me on a regular basis – I get one once or twice a week, and can spend hours thinking about what to respond. I’d prefer to be able to write back by hand, but a minute or two with a pen cripples me, and my handwriting has evolved from a beautiful clean flow into the aftermath of attack of the spider-zombies.

I’ve also, of course, acquired a cat; although G has to do all the hard work for that one.

I decide to try making dinner for once, and a cup of tea too. My current speciality is microwave-meals, although I can do oven-based ready-meals too if I need to. While the first plastic box heats up, I pour some water in the kettle, careful not to fill it any more than I need to; the last time the kettle was over-filled, there was spilling and scalding and water heading everywhere except it’s proposed destination. I sit down on the floor while I’m waiting for everything to finish, gently stretching my legs. It’s about the most strenuous exercise I can manage, nowdays. The microwave beeps and I carry through the dinner to G; he appears both delighted and impressed with my achievements. Thank you God that I’m not entirely useless. I’m too tired to make my dinner now though: I go back to bed and he fetches me my tea, then eats his dinner while mine cooks.

I chose lasagne, so he sits on the bed next to me and cuts it all up. Usually I try to cut one piece off myself, in a stubborn effort to retain my pride, but I’m too tired for that tonight. Thank you God that I can still feed myself. Thank you that I don’t need a tube. Tibby does his best to get a bit when I’m not looking, but I’m wise to his games.Mine! He eventually curls up, biding his time until the tub is empty and unguarded, and he might be able to sneak a lick around the edge of it.

I lie back and amuse the kitten for a while with a lazer-pointer, watching him dance around the bedroom after the fiendish dot. Eventually I can’t grip it anymore; I throw him a bottle cap and he amuses himself again. A friend has come online, so we chat for a while; then G needs to sleep, and the normal bedtime routine ensues. It’s spring, but I’m freezing cold – when my foot brushes G’s he yelps and moves away. An hour later, I’m boiling up and everything comes off (hands and feet still their usual feared icicles, though). My constant on-off-on-off routine with the blankets can’t be helping G sleep: Tibby got fed up with it long ago, and is snoring away under the bed. Eventually I get comfortable, and drift off to sleep.


Dreams; Movement; Delierium. Noise and light. A goodbye kiss. Door shuts; Footsteps fading. Blindfold and earplugs, dark and silence.


A loud noise breaks through the silicone barriers, but I’m not sure where from. Doorbell! I clamber out of bed, and crash straight into the door. Ow. Somehow I stumble to the intercom before it stops ringing.



I press the magic button of letting-people-in, but the patronising lady inside the computer fails to announce the opening of the door.

“Um. Is it opening?


“… Um, I can’t come down and let you in. Sorry. Could you try another flat?”

No post today. I make it back to bed, propping myself up on the wall as I go. The cat has emerged from his sleep to investigate the noise, and squeaks up at me. I check the time: half one. I suppose it’s lunch time for a little kitten. I shuffle to the kitchen, the kitten chasing the end of my stick each time it’s lifted up, and grabbing onto it with his tiny paws. My legs are working much better today.

I take my toast back through to the bedroom and eat in bed, checking my e-mails and catching up on comics. I make the mistake of scrolling down the facebook front-page; happy pictures of people who used to talk to me, having fun. My classmates preparing for graduation, acquaintances spending time together. Normal life. Oh God, don’t let me become bitter. I don’t want to be that person. I want to rejoice with people, but it hurts. It hurts so bad. I force myself to ‘like’ things that I know I would be happy about if I could join in; one day I might feel it. The light is filling my eyes with vinegar again, so back to dozing in darkness.

I somehow slept until after four! Pillows are propped up against the headboard, and I lean back against them, trying to get comfortable. I’ve been practicing sitting up: I want to be able to sit for extended periods without feeling like I’ve caught the plague, and my back being in agony for days. Not sure it’s working, but it would be great if I could use my proper computer again (with suitable support – desk chairs? Let’s be realistic!) Tibby looks at me pointedly, so I make room for him to sit on my lap and he snuggles against me, resting one paw on the trackpad and one on my hand. There’s a whole computer front set before him, and he picks the two most awkward places. Cats. I navigate to an online support group I joined, moving his paws out of my way repeatedly. Eventually he gets fed up and lets me use it properly.

M.E is the only illness I have ever heard of, where patients are actively discouraged from joining a support group. I think it stems from that common misconception that we’re totally well aside from “false illness beliefs” – maybe they think that if we talk to each other about it, we’ll make ourselves worse. I like to “bolster my false illness beliefs” by discussing the latest scientific research (when I can comprehend the papers), and chatting with other people who are housebound. We do all sorts of  activities that are “detrimental to our mental health”, like sharing pet photos and ideas for crafts, and giving out birthday greetings. New people join every day, asking for advice about the same things: My friends have all left me; My doctor thinks I’m faking to get attention; My family have no income anymore, how do we live?; Is there a cure?; Is there a treatment?; Is there any help out there at all? There’s a chatroom too, but the conversation is too fast for me to understand what’s going on; it gives me a headache. Using a forum is nothing like socialising, really. It’s nothing like friendship at all. It’s the best thing I’ve found.

I scan through the posts that are interesting, but I can’t really take the words in, so it’s more a case of reading the titles and moving on. Someone’s been admitted to hospital; hourly seizures, and they can’t swallow anymore. Someone has a new pet. A new paper’s out, something to do with cell dysfunction in M.E patients. Someone’s feeling worse, someone’s feeling better; ten threads discussing every-day things, and ten more from people panicking because they’re too ill to work. Someone’s new, someone’s taking a break, someone’s needing a hug, someone’s a grandmother! I’m not up to replying beyond “hugs” and “congratulations”. My headache gets stronger and I feel like I’m about to throw up. We take another nap.

Half an hour before G gets back, I get rid of my clothes from Sunday and run myself a bath. The water pounds against the tub like machine-gun fire as the tub slowly fills with hot, steamy happiness. I test it gingerly with my toe, forgetting that my foot is a numb ice block which won’t tell me anything. When I try to step in, it burns my ankle and I hastily withdraw and add more cold water. I’ve always liked my baths at a temperature G describes as “like the lava in metroid”; I love feeling the heat swirl around me and soothe my aching muscles. I lie back in the darkness, soaking up the warmth. Bliss. Tiberius curls up beside the tub, enjoying the free sauna.

After five minutes or so, my heart is doing it’s level best to escape from my chest. I used to enjoy long, hot baths like this, but I just can’t deal with the temperature anymore. I run the cold tap, enjoying the coolness swirl under me and around my body. The sound alerts Tibby, who pokes his nose over the side, fascinated by the water. I flick some at him and he drops back to the floor, trying to work out where it came from. I drip some more over the side and he starts from drop to drop: what sorcery is this?! The bath has cooled down uncomfortably, but at least it’s relaxing again. Thank you God, that I can still bath.

G comes home, right on time. “Are you in the bath? Do you want a wash?”

The bathroom light is blinding when he switches it on, but comprimises must be made for the sake of hygiene. He rinses my hair in the water, then pours some of his shower gel into a flannel and moves onto the rest of me. I point out how terribly erotic this all is; he laughs: “It’s somewhat spoiled by the cat viciously attacking my feet.” He helps me to get out – the sudden weightyness you feel when you step out of water is enough to prevent me from doing it myself – and helps me get on a towelling robe. I shuffle back to bed and lie down, waiting for my skin to dry. The heat dissipating from my body makes me sleepy, and I doze a little as G plays a game on the computer. Putting on clean pyjamas feels amazing.

G got us a pile of ready-meals from the reductions well, much more convenient for a full-time employee/full-time carer, and his wife who can’t cook anymore. I’m hungry, so he gets up to microwave them; I follow him to offer my limited assistance. My legs feel a bit shakey; too many trips to the toilet. Six steps in, they give out. I slump down by the front door and wait for him to come back through.

“What are you doing?”

“I wanted to be a helpful fairy…”

“Silly, you need to rest. I don’t need any help, come on – back to bed.”

He helps me up and half-carries me back to the bed, then goes back to the kitchen to finish dinner. We eat in front of our computers, him playing a game, me chatting to a friend on msn. I don’t talk to people very often in person, but a couple of old friends who live far away make a point of contacting me whenever they see me online. Thank you God for their support. I wish they lived closer.

We hold hands as we listen to the Bible, then stay up late, talking about things in the dark. On the worst days, this is what I miss the most – spending time talking with him, sharing our hearts. I feel guilty – this isn’t what he signed up for. Worse, poorer and sickness were in the vows, but I didn’t want to put him through them. He doesn’t seem to mind. Thank you God, for such a good husband. He sleeps soundly, and I pray into the night, counting the hours until I fall asleep.