Monday, 5 June 2017

Personal politics

Hello my lovely loves,
A couple of people have expressed to me recently their surprise that I get so involved and riled up about politics on social media.
I thought I'd take this opportunity to explain why it's so personal to me, particularly as the UK General Election is coming up.

When I got sick, my parents put their lives on hold and gave their home, their time, their money, and their support in helping me get better. They took me in and have done practically everything for me, including getting me help for my GP, and the NHS in general, finding private clinicians to help me manage my condition where the NHS lacks funding, and helping me apply for benefits to pay for the support that's been so vital in helping me improve.

There isn't a day that goes past where I'm not aware of how lucky I am that I have them to do these things, because, quite honestly, I'm not sure I'd still be here if I didn't.
It's all so terrifyingly obvious to me how impossible it would've been to cope without them; how easy it would've been to give up hope.

When I see those videos of people who've slipped through the cracks in the flawed system and are living in circumstances you can't believe are possible in the 4th biggest economy in the world, or I hear statistics about deaths and suicides related to benefits claimants being assessed wrongly, I'm looking at what my life could've been had I not been so lucky in the family I was given.
That could've been me so, so easily. And it could be anyone, you or someone you love, because anyone can get sick, or become disabled, at any time.

So, yes, I take my politics seriously. Because it is personal.

Sunday, 28 May 2017

Spoonie Problems: Fashion


Another little piece on Spoonie Problems. I really miss being fabulous.

For more on my process, head on over to my illustration blog.




Friday, 12 May 2017

The Year of All the Things AKA How I Got Sick

Hello again my lovely loves,

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.



Sunday, 7 May 2017

ME Symptoms & Tips: Fatigue - Part 4


PART ONE - PART TWO - PART THREE - PART FOUR


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.



And finally...


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




PART ONE - PART TWO - PART THREE - PART FOUR

Sunday, 30 April 2017

ME Symptoms & Tips: Fatigue - Part 3


PART ONE - PART TWO - PART THREE - PART FOUR

Hello again my lovely loves!


We’ve covered the types of tiredness, and the best ways to get decent rest, so let’s jump right into our next lot of tips for fighting fatigue! 



4. Rests rather than Naps


It can be pretty hard to get through the day without falling asleep sometimes, but, generally speaking, try to rest rather than nap.
Napping can risk messing up your circadian rhythms, especially if it happens after 4pm, and means that it can be even more difficult to sleep at night.

Having regular, good quality rests (as outlined in my previous post) can make all the difference, and allow you to build up energy throughout the day without risking terrible insomnia.

If you nap now and again after a particularly trying day, or a poor night’s sleep, then your body clearly needs it, so it’s nothing to worry about.




Sometimes naps are necessary. That's fine.


If you’re resting correctly and regularly, and you still fall asleep, even on good days, then consider resting more often. Which leads quite nicely into my next point, getting your resting ratio sorted.


5. Resting ratio


Once you've got the quality of your rests sorted, the next thing is sorting out the quantity.
The likelihood is that the amount of rest you need is going to be more than you want to. But, to be fair, having to rest at all is really annoying, so that's probably not a shock.


An NHS specialist nurse once told me that the ideal rest is 10 minutes out of every hour.
I was really upset at this number, because to me it seemed really high at the time, but to be honest, that's actually not very much at all.

I tried this level, and I continued to spiral down, because it just wasn't enough rest for my body. At this point, I was very, very sick, had become completely housebound, and being bed-bound was starting to look more and more likely.


Things got bad

My step-aunt, who has ME, along with three of her kids, told me that what I should really be doing to start with is resting twice the amount of any activity I did.
Only after keeping my energy levels stable for four weeks should I even think of dropping that level down, and, even then, I should only drop down a tiny bit at a time, continuing to hold any changes for four weeks to see if it had any negative effects.


This was shocking to me, and the unfairness of my situation made me angry and heartbroken for at least two weeks, but Ceri and my cousins have recovered to the point where they lead basically normal lives, and I was far more frightened than I was angry, so I tried it.


Best decision I ever made.


A month into my new resting ratio regime my brain fog, pain and nausea started to lessen ever so slightly. Those have continued to drop to the point where they tend to be signals that I've overdone it, or should rest, rather than constant companions.


The fatigue has taken longer (that's always been my worst symptom), but it too has become more manageable over time, and I find myself slowly able to do little things I couldn't again. It's still bad, don't get me wrong, but I feel like a tired version of me now, not like a half-absent ghost human.


I have been so, so careful and have stuck as much as I can to the idea of a resting ratio for the past two years. I've been slow in dropping down my ratio, and didn't drop it all for at least a year, because four weeks wasn't long enough at each stage for my body to take the adjustment, but I've come on leaps and bounds.


My sleep is better, now that I'm balancing activity with rest better, to make sure I'm not overstimulated at night.
I no longer feel constantly wired, and while I still have up and downs and crashes (that's the nature of the illness), I'm much more able to notice when I need to ease off and rest than I was before.
Looking at myself now, and myself two years ago is like looking at a different person. To the outside I'm still pretty bad, but I remember just how bad it got, and this is so much better.






It can be hard to remember to put long term improvement over short term achievement, but I remember how bad I was, and I don't want to feel like that again.


I realise that a resting regime as extreme as this one might not be possible for everyone, but I'd urge sufferers to try, especially if you're house or bed bound.
Even if you're not, having a resting structure has helped me so much that I can't help but think it would be beneficial to so many more sufferers.


I don't know everyone's individual situation, and maybe you have a system already in place, but if you have the opportunity to try it, then I'd really recommend doing so. Try it for a month or two, and see if it helps.

If you don't want to do 2:1 (twice the amount of resting to activity), then start at 1:1, or 0.5:1, although, frankly, the higher the resting levels the better.

If you do go for a higher level, and are able to, try adding some stretches within your abilities to your routine, just to keep your muscles flexible and strong after resting so much.


(If you're at a higher level of functioning and able to work, just try resting an extra five minutes every hour on top of your current system, and do a little meditation track, at work, at home, wherever. See if it improves things.)


Be sensible with it too; stick to it as much as you can, but don't use it as something to beat yourself up with either. 


It's not easy, and frankly makes you want to scream to begin with, but over time it becomes more comfortable until eventually it's a comfort, knowing that you have a system that works. Besides, the easing of symptoms is a powerful motivator, and doing this definitely eased mine.

Remember, that specialist nurse said that ten minutes of rest an hour was what a sufferer should be doing. And for me, that's my ultimate goal. And if you're really struggling with your fatigue... maybe it should be for you too.


6. Regulate your temperature


It might seem really obvious to some sufferers already, but it took me AGES to realise just how much my temperature effects my energy levels. 

If I’m cold, I feel so much more tired, and it takes ages to shake. To be fair, being really hot does the same thing, so winter and summer are always a bit of a battle trying to find that happy medium.

For keeping warm, try heat holder socks, silk skiing socks, and many, many layers. Break out that onesie if you have to.



All of the layers


For keeping cool, invest in a decent, low-noise fan (I saved up for a Dyson one that I can use as a heater in winter as well), lots of damp flannels, and a cooling gel pillow, like Chillow.


7. Grazing


If eating makes you feel tired (a fairly common ME/CFS symptom), then it's worth thinking about changing the way you eat.

Having six small meals instead of three large ones has really helped me battle this, as well as reducing my nausea.
There's less for my body to digest at once so it's not sending all of my energy to my guts, and I keep a steady level of fuel going in most of the time, so it stops me having energy crashes because of low blood sugar.


Keeping healthy snacks around can also be helpful. I like salted almonds: high in protein, and the salt helps balance my blood sugar out quicker than a dose of sugar.


For more information on a healthy ME diet check out my post, Cheese vs Freedom.


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I’ll leave it there today, but check back next week for my last lot of tips. I’ll be talking about finding your baseline, making judgement calls in pacing, and a couple of other things.
See you then!
H

PART ONE - PART TWO - PART THREE - PART FOUR


Monday, 24 April 2017

ME Symptoms & Tips: Fatigue - Part 2



Hello my lovely loves!

Okay, yesterday we did the tricky bit and talked about how fatigue feels, so it's time to get onto a slightly more upbeat topic and talk about some coping mechanisms.


It’s going to be pretty tricky to list every single thing I do to save or build energy in one post, considering that’s what I spend 90% of my time doing, so I’m going to focus on a more general overview this time, and then I’ll do posts on more specific items and behaviours another time.
If you have a preference of how those are presented (by room, or in the order I use them for example), then let me know .


I made so many mistakes in the first few years of this illness, so please don’t beat yourself up if these are things you haven't tried, or taken seriously, in the past. That's most definitely not my intention, and I've probably struggled to change just as much as you, if not more.


For a long time I didn't really understand, or want to understand, how serious my situation was (and is), and it took a severe downward spiral in my health to make me realise that I had to alter the way I was approaching my illness.
If I can write anything that might save anyone the pain of downward spiral, and help them reach those realisations without one, then I will.



1. The different types of tiredness


There are several different types of tiredness, even though it's difficult to tell when they all feel so awful!
Obviously, there's physical tiredness, but you know that feeling after a good cry? Emotional tiredness.
There is mental tiredness, that comes after using your brain for a period of time. (Obviously when you have ME/CFS that period is a lot shorter!)


There's even environmental tiredness; where you become fatigued by your own surroundings. It's that natural feeling that you need a break to stretch your legs after being in one place for a long time.
Changing your surroundings, or your position in a room, means sufferers can get some relief from this. If you are bedbound, even turning your head to the side can give you a new, slightly different view.


I also consider social tiredness a separate type, although technically I suppose it's a mix of mental, emotional and physical. But I find this one wipes me out the most, and sometimes I can still read a little or do another small activity even if I'm out of social energy, so I consider it different.
It's important to take these different types of tiredness into account when resting, because the best way to build energy, and get relief from the constant fatigue, is to address ALL these types of tiredness.


Resting to an ME sufferer has to mean a complete physical and mental rest. And emotional if you can manage it. Mental tasks, and emotions are just as tiring as physical ones, so it’s really important to get good quality rest that reflects that.

If you're lying down but using mental and emotional energy to worry about things, as I often did, then that's not going to help, so there are different things you can do to make sure your whole self is relaxed as possible.This leads us nicely into our next point.


2. Relearning Rest


By far, the most important thing you will ever to do to fight this illness is to relearn how to rest properly.
Most healthy people think of resting and think of putting their feet up and watching some crap telly, but when you have ME/CFS that just isn't going to cut the mustard. (Which sucks, because who doesn't love Homes under the Hammer?)


Our bodies simply do not have the capacity they once did, and anything that isn't relaxing your body and mind completely isn't really resting. And yes, that means TV. Le sigh.

My immediate reaction when someone first told me this was to get really defensive and angry at the thought of having to miss out on another thing that no one else was, but I'm so, so glad I did it. There were tears and strops and angst, but it was most definitely worth it.

Lying down, shutting your eyes and relaxing your body and mind as much as possible is really the only way to build the energy we're using back up. (At least until the scientists come up with a magic pill!)


It's harder than it sounds, but over time I've found a few ways that help me completely relax my body, mind and emotions.
It might sound like a bit of a faff, but it's completely worth the effort. Resting properly has been the single thing that's most helped me to improve.




Channel your inner Jess


It's not easy to change your habits after years of doing things a certain way, but I think after a time having a chronic illness like ME/CFS, you come to a realisation: pretending things are the same doesn't work. If you want things to be different, you have to be willing to change.



3. Tips for resting 



A. Focus on your breathing

Try to breath into lower abdomen, because this mimics how we breathe when we're asleep, so it automatically calms the body. 


Listen to the sound of your breaths and focus on the sensations of breathing. Your breath feels slightly cooler on the way in than it does on the way out, so notice all those little details.


If it helps you can imagine a calming, repetitive image to breath to, like waves on a beach.



B. Use your imagination


There's a meditation technique called visualisation that can be really helpful if you're struggling to focus.
The mind naturally wants to think, so you can use that and think of something that helps you; a really relaxing place, for example.

Lots of people like beaches, but I'm more of a forest fan, so I try to imagine myself in a forest and try to get as many of the details as clear in my mind as possible; the light, the smell, the sound, what I'm standing/sitting/lying on, how the bark would feel. Everything.
It's great if you don't get to go out much too, because as you get better at it it's almost like you're actually there.





You can also visualise your body and try to "heal" it. There's all sorts of studies and statistics into helping the body through visualisation, and, while I don't think I can think myself out of having ME/CFS, it can be relaxing and weirdly fun to imagine tiny workers fixing things around my body.


It's frustrating not having any medications to fight ME so it feels like you're doing something positive, and even if you don't want to try imagining healing things, you can imagine soothing and relaxing muscles, and that's pretty helpful.



C. Do not beat yourself up


Resting like this is hard, especially if you’re doing it for long periods, multiple times a day. There will be days when you struggle and get annoyed and frustrated, so when that happens, as it will, don’t beat yourself up about it.
Even when resting is going well it’s still boring and you’re going to get distracted so just do your best, and try not to worry past that.
It’s perfectly natural, so be kind to yourself. 


If you struggle, then think, "what would I say to my friend if they were in this situation."



D. Meditation tracks

By far the most useful tool I’ve found for resting, and it’s especially useful if you’re struggling to relax and switch off.


I use meditation apps on my phone, and I also have a separate iPod Shuffle that I use to keep meditation tracks on.
(I like to have a no-screen option available to me, because sometimes I’m liable to get distracted if my phone is on, and also because I have tracks on there to help me sleep if my insomnia is flaring up, and I turn my phone off at night to help me relax and signal to myself that it’s the end of the day. If I need to use my sleeping track, I don't want the bright light of the phone screen making me more awake.)



THE LIGHT! IT BURNS!

The main thing to remember about both apps and relaxation tracks is to find a speaker that you enjoy listening to. If you find them or their accent annoying then you’re not going to relax. 


There’s a man who does relaxation tracks (who I can never remember the name of) who has a really strong London accent. Loads of people find him really helpful, he’s actually pretty famous in the meditation business, but to me it just reminds me of living in East London and being really stressed, so I don’t use his tracks.


There are loads of options to choose from, and a quick search online will give you loads of possible choices, but here are some apps and tracks I’d really recommend:



 Digipill - App on iTunes and Google Play. 


This is a free app that comes with one relaxation track, and then you make in-app purchases to download any further tracks you might want. The speaker is called Brian Colbert, and he has a very soothing Irish accent.








Andrew Johnson - Andrew Johnson has several apps on iTunes, Google Play and Amazon Android and Kindle store. 
He also has a website where you can purchase mp3s onto your computer (and therefore any mp3 players you might have).

My favourite of his apps is Relax +, because it allows to you tailor your track to exactly what you want. You can control the background music, the length of the track, whether to finish the track as if you’re waking up or going to sleep, everything.
Again, there are some things included in the free app, but you then download any extra tracks that you might want.
His voice is a calming Scottish accent.




Mindfulness - App on iTunes. 

This app is made by Yuza, the same people who released the Digipill app, but features Professor Ursula James (RP English accent) who guides you through a set mindfulness meditation. You can choose whether or not to have birdsong playing in the background.
It’s a great first look into mindfulness, and is £1.99.
I actually prefer this to the Digipill app because the background noise/music is more balanced with

 the voice.





Relax (Muji to Relax) - App on iTunes. 


If you just want to listen to nature sounds, Muji has released a great little app that includes ocean sounds, birdsong, a crackling fire, a river, a waterfall and forest sounds. All of this and it’s free.








Meditation tracks provided with ‘Mindfulness: A practical guide to finding peace in a frantic world’, by Mark Williams and Danny Penman. 


This book is absolutely fantastic, and guides you through a really great introduction to mindfulness, but my favourite part is the CD of meditation tracks that come with it.
The male voice (I’m not sure whether it’s Williams or Penman) is RP English and just really, really soothing. 


What I like most about the mindfulness practise is that it constantly reiterates that it is normal for minds to wander, and that you don’t have to feel bad if that happens. This was actually my first foray into meditation and I’m really glad I started here.


Penman also has a book written with Vidyamala Birch, specifically aimed towards sufferers of illness, called Mindfulness for Health. Although it's specifically aimed towards sufferers of chronic pain, there are some interesting concepts around primary and secondary pain which some may find useful. (Basically when all the "oh god, not again" feelings make you tense up and get into a bit of an emotional spiral.)
They do, however, specifically say that a. that does not mean your pain is in your head, and b. even if your pain is psychosomatic, that doesn't mean you're not feeling it (useful for other conditions).


I've not listened to all the meditation tracks from this book as yet, but they seem good. Vidyamala Birch, who guides the meditations has a musical voice with an RP English accent. 


So far I prefer the meditations from the other book more, but I think that's because the man leaves more gaps in between talking to focus on the meditation. If you're new to meditation, or suffer from chronic pain quite severely, you might find it more helpful to have a more active guide.





Learn to Relax series, and Self-Hypnosis series - tracks from the Optimum Health Clinic.


If you are part of the OHC, they have some great tracks around relaxation.
I personally prefer the self-hypnosis ones, because I find the woman's voice (RP English) there more relaxing than the man's (RP English), and because the self-hypnosis tracks involve more visualisation, so I'm less likely to get bored and distracted.


The OHC is a private clinic that specialises in ME/CFS and Fibromyalgia, so these tracks are targeted specifically to sufferers of those conditions, but to get access to these tracks you have to have taken part in some form of their therapy, which isn't cheap.


I personally have found the OHC to be very helpful; the psychologists have all suffered from ME/CFS, it was founded by a sufferer, and they are able to help you from home via phone or videocall, but it is an expensive route to go, and there are plenty of other tracks and help available if you're not able to afford their prices.


Please don't feel that you need to spend a lot of money in order to recover. If you're able to afford more support, fantastic. If not, then that is what blogs like this are for!



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I will leave it there for today, but there's still lots of tips to go, so check back next time for information!

H


PART ONE - PART TWO - PART THREE - PART FOUR

Sunday, 23 April 2017

ME Symptoms & Tips: Fatigue - Part One

PART ONE - PART TWO - PART THREE - PART FOUR


Hello my lovely loves!

This is the first piece in a series I've been meaning to write ever since I started this blog. I really want to discuss ME/CFS symptoms individually, to try and explain how they feel to non-sufferers, and how I combat them for the fellow Spoonies.


It's taken a while to get to this point, partly because I felt there were other things I had to discuss before this would make sense, but also because it's really, really difficult to find the words to express how specific symptoms feel.
It doesn't really help that the first symptom that really needs to be addressed is fatigue, and this is one that's really difficult to put into words. I will try, though!


For my fellow Spoonies, the first part of this post is going to be me trying to get across how hard things are. You might find that helpful, but equally you might also find that upsetting, so if you'd rather skip that part and go straight to the section on coping mechanisms, then I will be posting the first tips section tomorrow. You can sign up for email notifications of when I post if you like too.


Most sufferers have a go-to metaphor for trying to explain ME/CFS fatigue. ME/CFS fatigue is not like normal tiredness, but we're always trying to find understandable ways to explain it to non-sufferers. 
I've heard someone liken the difference by comparing walking to the shop to doing a marathon, riding their bike in the wrong gear, or trying to walk backwards through treacle with a hangover. 
I've said it's like having a constant wine hangover, like having weights tied to your limbs or being a phone with a broken battery.
All of these are pretty spot on, but for me the one thing they miss out on is the relentlessness of the fatigue. 
Those are all great to explain the bizarre "dear-god-why-is-everything-so-difficult-now" feeling in the short term, in a short, relatively light-hearted way, but it doesn't really explain the full extent of the problem, because all over those things end.
Hangovers go away, ME/CFS doesn't.

I've always kind of thought of Spoonies in general as a bit like Sisyphus, the character in Greek mythology who is sentenced to push a huge boulder up a hill in the afterlife for all eternity, only to watch it roll down again and again, ready for the next days work.


From Gizmodo

(Although actually typing that has made me realise that the reason people use short, relatively light-hearted metaphors is probably so they don't sound that over dramatic.)

For once, though, I'm going to use the metaphor that I have never said. The one I've always thought but never felt comfortable actually saying to anyone else. It's really more of a story, so you'll have to bear with me, I promise there's a reason to making it so long winded.


Imagine this:



You've had a hell of a day. It’s 8pm, it's absolutely bucketing it down, you’ve just left work, and you've got to take public transport home.


You've had to work late because there's a big deadline coming up and all of the other people who are meant to be working on it have come down with this horrible flu bug that's going around, so you’ve ended up doing about three people’s work for the last couple of weeks. 

This is bloody typical, because they were barely pulling their weight before so you’ve been juggling everything to make the whole sodding thing work for the last couple of months and you’re so, so sick of it. But it’s important, because you need this job, and the pressure is there to keep it (despite all the back breaking work, you’re so skint it’s unbelievable), so you’re hanging on, and working through it as best you can. 

Your boss has had a terrible day too, and, as the only person in the firing line, you really don’t want to mess this up. It's a barrage of constant questions and emails and calls and jobs to do, and you're not quite sure how you're going to manage.

You've a horrible feeling that you're coming down with the bug too, because you're head is pounding and your eyes are scratchy and everything just aches. You were hoping that it was just the wine from the boring work dinner you had to go to from the (late, late, late) night before, but the odd disconnected feeling hasn’t left all day, moving feels difficult, and your concentration is just getting worse. You can barely think.

There’s no way you can get ill now because there’s so much work ahead of you, and you’re the only one who’s still upright. Just.


The walk to bus stop is frigid and wet and there's no room left under the shelter so you have to stand in the rain waiting for your bus.The first two buses are too full to let you on and they drive right past, splashing your legs from dirty, freezing puddles.You can feel the water trickle through the insides of your shoes.


It's cold and wet and dark, and, when you finally get on the bus, it has that horrible warm, dampness that feels like germs, and getting sick, and smells like B.O. and passive aggression. There’s a child screaming and they just. Won’t. Stop. 

There are no seats left and you’re jammed against several other commuters, who seem as happy about it as you are. It’s almost a disappointment you’re not packed in more tightly, because then maybe you could rely on the crush to hold you up.
You’re now sweaty, even though you still feel chilled, and it feels disgusting. Your head keeps pounding.


The bus terminates before it’s supposed to, but there’s no bus stop, and you're fed up of standing and waiting, so you trudge on home. Your legs hurt. Everything hurts.


You walk down the cold street, and your hair is plastered to your head because your umbrella broke on the way into work, and you had to work through lunch so you didn’t replace it. You didn’t really have the spare arm to carry one anyway. The cold water is making your neck ache worse, and your bags feel like they're getting progressively heavier. Your wet shoes are chafing your feet.


You walk up to your cold, dark house. No one is in, and all you want to do is crawl into bed and never leave.
You look for your keys, but when you look through your bag... you can’t find them. You look through everything frantically, before realising you must have left them at work. 


It’s cold, and raining, and you’re damp, shivering, sweaty, achey, weighed down and so, so exhausted that you can barely think or keep yourself standing, but if you want to go inside and lie down, you’re going to have to go back and do the whole thing again. 


That. That instant when you don’t know whether to cry, or laugh hysterically, or scream, or pass out, that’s how ME/CFS feels when you wake up in the morning. When you’ve just slept.
Like you’ve already run a thousand marathons, with a thousand hangovers, and dear god you are so tired of it you don’t know how you’ll make it through the day. It’s not the tiredness that gets you. It’s that it never goes away.
Physical tiredness is hard, but the kind of bone-deep, soul-deep exhaustion that comes of being exhausted all the time is in a league all of it's own.


….


But. 


….


It doesn’t have to be like that, and just because it has, doesn’t mean it always will. 


To my Spoonies, we can beat this. You know that it really is that hard, and sometimes, if you’ve pushed yourself, or something unexpected has happen, it’s even worse. I’ve spoken about that before, and I will again.
But, there are ways to beat back the tiredness, the never-ending exhaustion. Hopefully, one day it'll go completely, but in the mean time we can definitely make it more manageable, so that each day the burden gets easier to bear, until the load gets lightened.


And now I've thoroughly depressed everyone, here's a puppy.




Ah, Google. You never let me down. (Except when you don't pay your taxes.)


I'll see you tomorrow for the first lot of tips.


H