Today I’m going to share the post I’ve been meaning to write since I started this blog, namely the story of how I got sick.
I used to get asked this a lot when I met people, and I absolutely hated answering it. It’s actually one of the reasons I started this blog, so that when people asked me that question I could just tell them it was a long story and direct them to my blog instead of having to talk about it.
That may sound a little bizarre, but from my point of view, getting sick is probably the worst thing that’s ever happened to me, and the period leading up to that was one of the most stressful times in my life. Having to talk about it when I was still suffering so many effects from it, was a little like watching the car crash that crippled me in slow motion, over and over again.
I hasten to add that it’s not as bad as that any more; over time that feeling faded, and it became more like watching an episode of the Crystal Maze and shaking your head in shame as each team member (with steadily worse 80s hair) got locked into various room while Richard O’Brien made snarky comments in a fabulous jacket.
Now… it’s just what happened.
I’ve spoken before about my tendency to blame myself for getting sick. That's because I was under so much stress beforehand, which is a common thread in those who get ME/CFS. There’s part of me that says, “if you hadn’t done x or y maybe you wouldn’t have become sick,” or, “you shouldn’t have done so much, how could you have been so stupid?”
But it’s something I would never in a million years think about, let alone say to, someone else with ME/CFS, so I’m learning to give myself the same courtesy.
We can never know what might have been, and… I was healthy, young, capable. I had every reason to believe that, while I knew I was pushing myself farther than I had gone before, that I could take a leave of absence and after a month's rest I would be fine.
Obviously that didn’t happen, but... there are people who don’t have periods of stress before getting sick. I could have gotten ME/CFS anyway.
I certainly never planned this, or pushed myself deliberately knowing the consequences, and I don’t believe anyone else would either.
This happened to me, to all of us, and it’s not our fault. Even if that’s incredibly hard to believe sometimes.
I made the choices I did in good faith, and that’s all anyone can ask.
You might think that if that's the case then there's no point continuing to talk about that period in my life, but (even without what followed) it left its mark, so I think writing about it will be cathartic.
Now that’s said, I’ll tell you the story. Buckle in. It was a very long year. Well. A year and a month, but who's counting…
October 2011 was the beginning of my second year of my Master’s Degree.
I had taken the part time route for my MA that would allow me to work and support myself in London, so instead of one year, the work would be spread across two.
During the first year of my MA I’d changed jobs, from being a waitress at Pizza Express to working as a Specialist at the Apple Store. I had wanted to be surrounded by creative people (and less covered in tomato sauce and garlic butter), and, although it was hard work, I finally felt I had found my place, both at work and at university.
I had decided that, while the previous year had been good, I really wanted to get as much as I could out of my last year at Camberwell, and what was likely to be my last year in higher education. I was also very aware that my dissertation deadline was coming up, so I knew I had to hit the ground running. I had organised to work three days a week at Apple, Thursday to Sunday, so I could study for three days a week, Monday to Wednesday, and have one day off a week.
I also started going to jive-dancing lessons with a friend. I’ve never been very fit so I thought that perhaps some exercise would allow me to build a bit more stamina, and also be a fun way to have some time when I didn’t have to think about work.
Basically, the plan was to be a Super Competent Badass.
I had signed up to be a Course Rep the year before. For those of you that don’t know what that entails, it means taking any grievances or ideas from your course members through to the staff members (otherwise known as a series of extremely tedious, compulsory meetings where a lot is spoken about and very little decided upon); acting as support to the course members, especially if they’re new, or struggling; and, in the case of art based courses, helping organise events, fundraisers and the final show at the end of the year, which in our case was in September.
To be honest, I’m not sure how I did support-wise. The journey to Camberwell took an hour and a half (two buses, and trains on both the underground and the overground), so I wasn’t there as often as I would’ve liked. But I tried to make sure everyone knew who I was and how to contact me, got everyone out to the pub as soon as possible, and helped organise a Christmas party, etc.
There were lots of meetings, workshops, and a small exhibition to allow our work to be marked that term. I also had two commissions from different educational publishers to work on. But most of the period from October to December that year pretty much passed in a haze of research and writing.
Mid December, a couple of weeks before my Research Paper was due, I got a terrible case of Tracheitis, which is like tonsillitis, but in your windpipe. And is about as much fun as it sounds. It hurt to breathe and each breath sound rather like a set of bagpipes deflating.
I went home to Norfolk, where my dutiful mum nursed me back to health. The doctor told me not to overdo it, and that six days a week was a lot to work. It was, but I’d worked at Pizza Express with people who did that most of the time, so I didn’t really think anything of it.
I did at least try to take things a bit more slowly in January. I was still recovering, but I was able to focus more on the drawing aspect of my MA. I had been offered two fairly large commissions in the summer, so I knew it was best to try and work on the alphabet book early, so I wouldn’t be as stressed near the end of my course. It was certainly sound in theory.
I took some time off to visit friends here and there, and got into a bit of a rhythm with everything. I would lie in on days when I didn’t have to work at Apple, spending a leisurely morning reading, have lunch and start work on my MA or my commission work in the afternoon. I’d work until 11 or 12 that evening, and then head to bed to start again. It wasn’t easy, but I was enjoying it. I’ve always liked being busy, and I was doing things I loved.
Apple could be hard work; you have to be on the ball constantly, but my fellow employees were so incredibly lovely that I always felt supported. I had made a place for myself in the Setup Team (the area of the store where new owners could unbox their products, personalise them and learn how to use them. I was even starting to do training of my own, and it felt great.
I agreed to apply with a friend from my course to run a week of workshops in Poland in October. There’d be a group of us, so I’d only have to run one workshop while I was there, and it’d put us in great stead for projects after the MA had finished.
At the beginning of February I got my results from my mid point review; the official half way point of my course. The results were fine, but not as good as I had hoped. In response to this I created something which I now term “the Schedule of Doom”, although at the time I called it, “the Schedule of Sort-Your-Life-Out”. It looked like this…
As you can see, it was pretty full on. Unsurprisingly I got run down enough to get a throat infection not long after implementing this. I think this was when it really started to hit me just how much I had taken on. But… I was a bit stuck. I wanted to do my MA, that was for me, and to help me in my chosen career path. It was also extremely expensive and I’d already paid for it and done a year and a bit of the course. I didn’t want to stop studying. (Plus if I did defer I’d probably have to pay even more extortionate fees, as the cost had just gone up again for new intake students. I wouldn’t be able to afford to pay more to study later. It was now or never.) It seemed a bit ridiculous to say no to a decent commission with a respected publisher because that’s what I was ultimately training for, and I’d already signed a contract with said publisher. Most illustrators have difficulty saying no to commissions and I’m no exception; there’s always the worry they won’t ask again. I couldn’t afford not to work part-time at Apple. London is expensive and I wouldn’t get paid for my commission until after the final deadline which was months away. Although Apple’s wage is good for a retail job (and no, I won’t tell you any more details on that score), but with the (extreme) expense of my rent I had around only £250 a month to live on, so fewer hours there weren’t an option either. I did what I could. I finished my dancing lessons and stopped going to dancing events in March, so there was one less energetic thing to do. I negotiated with work to have Sundays off every week so I knew exactly when I would have free time. I had already said that I couldn’t help organise the extra exhibition the course had in April, as I knew I was already dealing with a lot, and had more to come.
Keeping the level of effort necessary was excruciating. And things outside of my various workplaces weren’t easy either. My father’s side of the family were being… difficult, to say the least, and were causing a lot of stress and pain; and someone I knew who was struggling would call me daily needing support, which quickly became overwhelming. I eventually started to get panic attacks when they would call.
My landlord did his yearly hike of rent, and in an effort to save money, and potentially ease some of my burdens, I tried to house hunt for cheaper accommodation. It became clear that the stress of trying to find something that wasn’t a flea-infested rathole and was somewhere in my price-range wasn’t something I could cope with, so I had to stay where I was and deal with having even less money each month than I had been previously.
Thoughts of taking time off work to focus on my studies became even less unlikely.
I decided that I’d just take things day by day. It was summer, my show was in September, and then it was just my trip to Poland in October. The end was in sight.
I decided to tackle the end of year show with a vengeance, and looked for bargains for tables and shelves and booze and printing. I worked out that we could get the whole show paid for, including our own invite, drinks, shelves, card holders, everything, for £35 a head, plus our individual print costs, which I bartered down to a decent rate from a printer’s in Covent Garden.
(Shout out here to everyone who helped me organise the show, you were amazing, and also thanks to everyone on the course for never losing your temper with me over my constant email reminders.
I realise signing off on my emails as the Exhibition Nazi may have been a bit weird, but, in my defence, organising that many stressed illustrators is like herding a small army of particularly creative cats.)
There was slight hiccup when my beloved alphabet book was made late by a heathen in charge of a printer, and I had to reprint my book with the guys in Covent Garden (Orange Printers are bloody lifesavers), and then essentially teach myself how to do hardback bookbinding so I had something to hand in to the assessors, but, miracle of miracles, I managed. Even if I had a few grey hairs afterwards.
It was a long slog, but I wheeled a suitcase of work across London to hand everything in, and rewarded myself with a burger, a milkshake, and, joy of joys, another throat infection.
The final show came and went, and I was running around helping with the show shop, and then it was off to Poland for a week. By this time my nerves were really beginning to fray, and I was pretty sure I was becoming depressed. The trip to Poland was a resounding success, and I loved it, but I was so tired I did have to hide away and have a cry at one point.
Finally, I had only one item left on my social calendar. A family wedding at the end of October.
I was coming down with something (again) but I went to blow of some steam and danced with my family (some of whom ironically suffer with ME/CFS) and the next day I wearily made it home. There was a kid on the train who screamed for the entire 45 minute journey. Sometimes I wonder if he was sick and I caught something from him. I hope against hope he doesn’t have this.
It was Halloween so I ate chocolate and watched terrible werewolf movies and then fell asleep.
On the 1st of November 2012 I woke up sicker than I ever had been. I could barely move. My flatmate had to go and buy me soup and painkillers because I couldn’t get out of bed for longer than it took for a bathroom trip.
I’m not sure how long it was until I went to the doctor, my memories a little blurry, but I distinctly remember paying £2.20 to catch a bus one stop (about 300 metres) because I couldn’t make it all the way on my own. My fellow Londoners (and poor, starving artists) know that’s practically heresy.
I also remember the doctor taking one look at my tonsils and saying, “that’s a lot of pus.” (Thanks, Doc. Don’t hold back.)
I told her how tired I was, and how much I’d been doing, and she signed me off work for two weeks, and prescribed me antibiotics, anti-depressants, and lots of rest.
In hindsight, my walk to the pharmacy must have been pretty funny. I looked so awful that people took one look at me and actively avoided me. As someone who was regularly hired in customer service roles for looking approachable, it wasn’t something I’d ever really experienced.
It was like having a impenetrable bubble surrounding me that was bouncing the residents of Stratford off like pinballs. Perhaps they feared the zombie apocalypse. Or rabies.
Despite my plague-ridden appearance, I got the drugs. I don’t actually remember how I got home.
A couple of days later I could still barely move, so my wonderful mother, who’d been worrying about me overdoing it for so long, and was so desperate to help, came to Stratford, rolled me in a duvet, and took me home.
And I’ve been here ever since.
I realise that this might seem like a ridiculous story to you; that I took on so much, or that I didn’t give up more, or that I expected to be okay after doing all the things I did, but remember that I had no reason to suspect that I wouldn’t be fine after a period of rest. I was healthy. I got sick, yes, but I always got better.
You hear stories of people overcoming difficult odds through determination all the time, and I had that in spades, so why should my story be any different? I think in the end, it’s just chance.
Sometimes I wonder whether I still would’ve got sick if I chose a different career path with fewer, more standard hours. But then I realise how many of my friends I never would have met, and… it’s just not worth it.
My life now is hard, but I did the things I did to be my truest self, and I met some amazing people along the way, so I can’t be sad about that.
Plus, I very well might have got sick anyway, but then I wouldn’t have had all those great people with me, and wonderful experiences under my belt. And they were wonderful.
I think the most important thing is that I’ve learned from all the experiences I had over that insane year, and that’s why I don’t call them mistakes.
When it comes down to it, I like the person my path has made me into. Even if that person has to lie down a lot.
Hello my lovely loves! Welcome to the fourth and final part of my tips for dealing with fatigue! If you've made it this far, I congratulate you; it's a pretty hefty piece, so thanks for putting up with my rambling! Today we're looking at pacing, finding your baseline, and how to make judgement calls. Let's get this show on the road.
8. Pacing Pacing is something that pretty much all ME/CFS sufferers know about, but it's always worth mentioning. Try to spread out tasks and busy days so you have quieter days for more rest in between, regardless of your ability level. Within the days themselves, break up tasks into sections if you can feel yourself straining, or accept that you're going to have to do some extra resting if you try to power through something. The whole point of pacing is to avoid peaks and troughs in your activity and every levels, so try to aim for what you're capable of consistently, without significant energy drops, rather than focusing on what you can achieve at the time without a thought for the consequences. I am aware that this sucks, but you and I both know, dear Spoonies, that Payback sucks way more.
9. Finding your optimum baseline There's a lot of talk from various ME/CFS sources about finding your baseline, but it's often confusing and there's not much in the way of practical advice. For those of you that don't know, your baseline is the level of activity you can manage without making yourself more ill. Personally, I think what you want to look for is your Optimum Baseline, the level of activity you can manage that means you slowly improve. That's definitely a case of long term gain over short term achievement though, and I know it might not be open to everyone if they don't have the level of help they need. Try to put your health first whenever possible though, you ARE worth it. This is one area where the resting regime I spoke about last time really comes into its own, because, once you've upped your rest so much that your symptoms ease a bit, you can actually think enough to see patterns again!! (Gasp!) However, until that point comes, and even after, the best thing to do is to record your daily rests and activity periods. Finding a baseline really means that you have to be able to see patterns; if you’ve overdone it you can trace it back to which activity, or what number of activities, your body found too much. Over time you’re able to see from that how many activities you’re able to do in a day without becoming overstimulated and finding it difficult to sleep, why you might be suffering a crash, and then you’re able to pace yourself much more effectively. The problem is, of course, that part of having ME/CFS is having a really crappy memory, so writing it down is really the only way to remember what you were doing two days ago. I experimented with a few different ways of doing this, but many of the recommended options are really exhausting to fill out. You can tell when something’s been designed by someone who doesn’t actually have fatigue! It’ll take a little experimentation to find your best method, but this is how I do it. I have a notebook (I prefer long, thin notebooks for this), and in it I write the date, how many hours I’ve slept, whether or not I had insomnia (written as INS), an interrupted night (INT), or had to use a sleeping pill (TAB). Whether I had a bath, or a wash, or a wash and a hair wash in the morning. Then it’s a list of my rests in a day to keep track of my resting ratio. This helps me stay on track with it more easily. Finally, there’s a short list of activities I’ve done that day, like working on a blog post, having a Skype medical appointment, or doing a bit of cross stitch. I’ll also note down things like when my period starts, or if I have a crash. Even if I have a day when I have a good cry (emotional energy expenditure)! It sounds complicated, but it’s actually pretty simple and short to do. Here are some pictures.
The "Cafe" is my Mum's studio at the end of the garden.
We go down there to get some sun in the winter and have a hot drink.
Some people might find it helpful to rate their fatigue level out of ten for each day. I’ve never found this particularly helpful, to be honest, so I don’t bother. From this I’ve been able to see why crashes have happened and how many small activities I can do in a day before getting overstimulated and not being able to sleep (used to be three, now it’s usually four). I know now that having a bath or a shower has to count as an activity on that list, but that having a quick wash in the sink and a hair wash doesn’t. It’s helped me to know that my usual delay between activity and Payback is two days, so I know when I’m going to have to schedule a rest day, and how many days to leave empty before an important appointment that I can’t really miss. It’s helped me pace myself so much better, and makes me feel like I’ve regained some level of control over the unpredictable nature of my illness. Treating your illness as a science experiment you're documenting also has the added bonus of helping you gain a little distance from it when you're struggling to deal with the emotional impact. As something that effects every aspect of your life, getting even a minute distance from your illness makes a massive difference in your mood! The lab coat and safety googles are entirely optional, though.
10. Energy Saving mode is not laziness One thing that it took me a long time to come to terms with in terms of battling fatigue, is that saving energy is not being lazy. I sit down when I brush my teeth. On good days I could probably just about stand for as long as my electric toothbrush (more energy saving) runs on it's cycle, but I'd be tired and probably quite dizzy by the end of it. So... why would I do that when I could just sit down and avoid the whole thing, AND have more energy for other things? Those are important spoons I'm saving. It makes sense when you say it like that, but it took ages for me to stop thinking that I was being super lazy by sitting for such a simple task on days when I could probably do it standing. But it's little tricks like that that help me to lower the frequency and intensity bad days in the first place, so I've had to learn, and keep reminding myself that I'm not being lazy, I'm conserving my energy for more important things. I am channeling my inner energy saving lightbulb. Energy saver mode is a legitimate tool, and you should never feel bad for using it.
11. Posture One thing that can make a lot of difference to your stamina energy-wise, is finding a good way to sit. Having your feet elevated slightly, or legs on the same level as your hips if you're really struggling, helps keep your blood pressure even, and keeps your body from working too hard. Plenty of sufferers, especially those on the more severe end of the spectrum, also have, or develop, POTS, or Postural Orthostatic Tachycardia Syndrome. It sounds really scary but it basically means that your blood pressure and heart rate have an unusually strong reaction to changes in posture. The worst form of POTS means people often faint on standing, but that's not actually necessary; milder forms include dizziness on standing, or even just an unusual drop in blood pressure and rise in heart rate when standing still.
It's very likely I have a milder form of POTS, for example, because I really struggle to stand upright and still for more than 30 seconds. I find it a lot easier to function when my legs are at a level with my hips so I spend most of my time that way. One thing I would say is while being aware of your posture is helpful, it's best not to sit with your legs up all the time if you can help it. Over time your body can struggle more with having your legs down again. It is, of course, up to you. You know your body best, and if you think this might help, even occasionally, then I'm glad to place another tool at your disposal.
As my health improves over time, I intend to gradually spend more and more time with my legs lowered, until I'm able to stand it more easily.
12. Judgement Calls One of the hardest things of dealing with an unpredictable illness is disappointing people. You don’t know if you’re going to be able to commit to things, and if you decide to there’s still a chance you’ll have to back out. Although keeping a record of your activity does help, we’re still human, and we’re going to get it wrong sometimes. When that happens it’s hard to know whether to push yourself or not, so here’s some tips about helping you make that call. Your health comes first Obviously, some things, like medical appointments, have priority, and while being reliable is nice, you have to put your health first. It’s heartbreaking, but your friends, family or workplace will not want you to make yourself worse for them. If they do, quite frankly, they can jog on, because the problem in that situation is not you. Tapping (EFT) Anxiety is super common in sufferers of chronic illness, so doing something like Tapping, otherwise known as Emotional Freedom Therapy, can be a really good tool to get rid of the excess emotion so you can look at problems with a clear head. I’ve spoken about it before, and said that it sounds like a load of cobblers (and also looks really strange when you’re doing it), but, even though I was really sceptical, it’s actually been an incredibly useful tool for me. Have a look online and give it a try.
Enjoy vs Endure If you’re just not sure if you can do an enjoyable activity, and are worrying about it, take a look at the way you’re phrasing in your head. “What can I do to make sure I enjoy this?” is very different to “How will I endure this?” Positive thinking is all very good, and sometimes it can be an anxiety issue rather than an energy issue that’s causing the problem, but if you’re thinking about enduring something rather than enjoying it, then it’s probably not worth it. If you do suffer from anxiety, try doing a meditation, or Tapping (EFT), and then check in with your thought patterns again. If they’re not edging out of endure, then it’s an energy issue. Not worth it.
Be Honest I find a lot of the time I already know whether I can manage something or not, I just don’t want to admit it. If you don’t have enough energy for something you really want to do, and you don’t think you’re going to be able to manage the Payback, or you’ve got things you have to prioritise too soon after, then you’re going to have to be honest with yourself. And then scream your frustration into a pillow. But, you know, in an energy-friendly way with rests in between.
13. Treat Yo’Self Sometimes you have to give yourself a treat. Whether that’s having a day (one day, mind you!) of saying "Bugger it!” to your resting regime; doing something you want to and damn the consequences (and the Payback); buying yourself a nail varnish on eBay; or just eating your own weight in ice-cream after having to say no something, you need to give yourself rewards for being on it the rest of the time. Being chronically ill is a total bastard, and keeping sane and upbeat whilst managing it is really, really difficult. So occasionally, treat yourself. Because you put up with a lot of crap, and you most definitely deserve it.
And so, this is the end of my massive post on battling the Big Bad Tired. I really hope some of you find it helpful. I’ll work on specific energy saving tips, like household aids etc, another time for you. Sending love to all my readers, and an extra squeeze to my Spoonies. H