In terms of things you don’t expect to ever write a review of in relation to M.E., fairground rides are probably quite near the top of the list. As anyone with M.E. will tell you, even every-day things can take on new dimensions of consideration and complication so very-much-not-every-day things tend to require quite a bit of extra thought. For that reason, here’s the most random review you’re likely to ever find on this blog.
Since I’m an adrenaline junkie and can’t resist having a go at things that make the average person with an accurate perception of their own mortality shake their head in disbelief, when I heard the Star Flyer was coming to Edinburgh over the festive season my automatic reaction was I NEED TO GO ON THAT. My friend Rachel, who is terrified of heights but likes a challenge, came with me and last night we spun around 60 metres above the city in a glorified plastic bucket. It was epic.
So, what would a person with M.E. need to think about before climbing aboard?
The Star Flyer is in the centre of town
Obviously this can be an issue because you actually need to GET to the centre of town. Luckily, the location is pretty handy. It’s in St Andrew’s square, so there’s parking at Greenside (next to the Omni Centre) and the St James Centre, with only a short walk required. St Andrew’s Square is also taxi-accessible and close to a tonne of bus stops. Providing you’re having a fairly mobile day, it’s not that hard to get to. There are also places to sit down in the Square, so if you need a rest you can have one easily.
You might have to queue
I went on a Friday evening at about 7pm and had to queue, standing up, for about 10 minutes. This is WAY less than I expected, but I suspect it’s going to get busier the closer we get to Christmas, and certain days and times might involve longer queues. You can get tickets online and save a little bit of money (less than £1) but when you arrive it’s still first come first served, and tickets are day-specific so if you rock up and there’s a massive queue that you can’t stand up for long enough to wait in, you won’t be able to use your pre-bought ticket another day. I bought my ticket at the gate for this reason.
It’s bloody cold up there!
Depending on the ambient temperature and wind chill factor (it’s winter, people), it can get seriously cold when you reach the full height of the ride. If you find that chilly temperatures exacerbate any of your symptoms, make sure you wrap up warmly! Assuming I’m a lady-human of about average width, I was wearing a sweater and a coat and still had plenty of seat-space to spare.
There is no feet and leg support on the seats
Part of the amazing sensation of this ride is that you feel very disconnected from anything solid and stable. This is incredible and totally adds to the experience, but can cause a bit of physical discomfort. The seats are hard plastic and your feet are basically swinging in the wind, so I found that my lower back and thighs felt very tense from the lack of support and were bit achey for a short while afterwards. The ride only lasts for a few minutes, so any immediate discomfort is at least not prolonged. I’d advise going on a day when your pain levels aren’t already high though, and be prepared to have a seat somewhere closer to the ground directly afterwards rather than walking back to the car/bus/taxi straight away like I did.
It’s not exactly cheap
Tickets for the Star Flyer are £7.50 on the gate (£5 for anyone under 1.4m) and you’ll also need to pay to get there. My entire trip was £10, as it included £2.50 for just under and hour’s parking at Greenside. I generally wouldn’t spend £10 on something that only lasts for a few minutes, but it’s a once-a-year kind of experience and a pretty unique one too so, to me, it was worth saving the pennies for.
The lovely thing about this experience was that it doesn’t require a full day out, or even a full evening out, if you don’t want it to. It was super fun (if you’re into that kind of thing!) and memorable, you get to see Edinburgh city centre in festive mode (which I adore) from a really unusual perspective and do something out of the ordinary and exciting without much physical exertion. Each seat holds two people, so it’s also something that you can share with a partner or friend.
I fully recommend the Star Flyer. Plan your trip in advance, go on a day when your symptoms aren’t too bad, wear something cosy and get ready to scream with delight!
Me, in an Instagram-ish manner. Embracing my under-eye circles and Resting Bitch Face. Deal with it.
I’ve mentioned here before, a number of times, how having M.E. forces you to plan the most simple things in a ridiculous amount of detail just so you can actually get stuff done. I’m pretty sure I’ve also talked more than once about how having fun with my appearance has a hugely positive effect on the way I feel about living with a chronic illness.
I’ve you’ve never encountered my musings on that particular subject, here’s a summary to put the rest of this blog entry into context. It cheers me up a lot to wear make-up, paint my nails and do interesting things with my hair. I tend towards the vibrant and creative. I am not a natural-look person, most of the time. There’s something very uplifting about having fabulous hair and nails when the rest of my body is feeling rotten. It takes a bit of time and energy to achieve this, but (to me, anyway) it’s totally worth it.
Disregarding for a moment the visual aspect of personal care, doing things like having a shower and washing my hair on a semi-regular basis actually requires scheduling. Yep, on Tuesdays I only work in the evening (rather than afternoon and evening) so that I have time to have a shower and wash my hair earlier in the day, then recover suitably before work begins.
A full body cleaning session is pretty tiring so it’s generally not something I’m able to achieve either before or after a full day of work. Thankfully I work from home so it doesn’t matter too much that I tend to work in my pyjamas, with no make-up on and hair like Sonic the Hedgehog. I should probably state for the record that I do actually shower more than once a week…just in case I may have accidentally given the wrong impression there.
Today sees the monthly Doing Of The Roots, where my naturally mid-blonde hair is turned a different colour by the power of chemicals. The act of slathering dye on my hair doesn’t take too much effort, but washing it off again means standing up for longer in the shower. I am currently rocking a serious platinum blonde, which is my favourite lazy-colour as it requires pretty much zero upkeep apart from the monthly root-doing. It doesn’t fade over the course of a few weeks the way the pink and blue I love to much tend to do. It looks ok in a grungy sort of way when regrowth becomes visible. A hair colour that looks very high maintenance actually isn’t at all.
I really don’t enjoy looking sick, but it’s something that can’t be helped a lot of the time. A lot of people with chronic illnesses who I’ve spoken to over the years have shared the view that dedicating a little bit of time and energy (when you have it – style is not worth making yourself sicker over!) to seemingly frivolous appearance-related things is good for the soul. When your body is the source of pain and unhappiness a lot of the time, it feels great to do something little that puts the awesomeness you have inside onto the outside.
Always a fan of learning-for-the-hell-of-it and the interesting and wonderful things that can result from doing that, I signed up for a 6 week course in Developing Innovative Ideas for New Companies: The First Step in Entrepreneurship on Coursera. A long time ago, I studied business, psychology and sociology. I have worked in quite a variety of different fields and even ran my own business for a few years (although sadly being a professional photographer was rather too much physical exertion for my body to handle on a daily basis). I’m a business theory geek and my vague plans for the future involve being my own boss again, albeit in a manner more appropriate to my physical requirements.
My choice of course was based on a combination of “ooh, that looks interesting and useful!” and “I can actually do that alongside my job” and I am so impressed with Coursera as a thing. All the courses have slightly different structures, but they’re all reasonably short, self-contained, free and accessible. There are assignments that you can choose to do, or not. Plenty of people do courses just to absorb the material without any ‘homework’. It’s rather awesome if you’re after a bit of mind-expansion without financial layout.
My course doesn’t technically start until 2nd December but the first week’s lectures are up already and I’ve watched them all. I downloaded the accompanying (optional) course material which came to a grand total of $5 (about £3-something?), I’m pretty excited about geeking out and fully plan to at least attempt all the weekly assignments.
My brain is a happy wee thing right now
Samhuinn is over, fire festival stuff is finished (it was awesome, by the way) and things are returning to a state where I can use my couple of times a week when I get out of the house for activities that don’t smell like kerosene. Don’t get the wrong, the activities that smell like kerosene are amazing and I love them, but it’s good to have time to catch up with people I haven’t seen in a while and things I haven’t had the time or energy to do over the last couple of months.
Today saw my usual new year clear-out (Samhuinn is totally my new year, 1st January means very little to me), emptying cupboards and drawers and boxes in a ruthless space-making mission. It’s funny how stuff that seemed so important to keep before suddenly doesn’t any more. Every time I do this, I’m reminded of how much I hang on to things simply because I’m utterly terrible at letting go. I’m not talking objects of great sentimental value here, just random things. I sound like a hoarder. I’m not – there’s not enough space in our flat to properly hoard – I just have this tendency to look at things and things “Just in case”.
I feel like right now it’s healthy to make some space in my home. I’ve made some space in my life and some space in my head. I’ve been feeling a bit frustrated lately and the only sane way forward at the moment is to welcome my muse back and allow ideas to incubate without limitation. I’m all about the potential energy right now. It’s not a case of “Here’s a big thing to do and now I’m going to do it or maybe not because I can’t”. More a case of “There are so many things I could do in some way, shape or form, and I’m going to explore them as concepts until some kind of order and realistic pathway identifies itself”. I don’t remember the last time I felt like this. It is really really good.
I realise this all sounds terribly cryptic. It isn’t supposed to. I’m just in a place of embracing possibilities and am enjoying being in this place. It’s kind of hard to articulate. But some of the most positive things are.
Please take a minute to read A Radical Care Pathway for ME/CFS by Nancy Blake on NHS Managers Network.
When I saw this today, it brought a tear to me eye. I wish this way of thinking had been around when I became ill. The advice that the display of ME symptoms following a viral illness should be treated as a medical emergency and that patients should receive treatment and further testing at home rather than being expected to visit hospitals, physiotherapists etc is so completely logical.
The article discusses the initial need for complete rest followed by a gradual and supported return to activity, beautifully attacks the patient-blame culture which has risen up around M.E. and also (thank you, thank you so much!) contradicts the mistaken belief that the only way to recover from an illness is to ‘fight’ against it. I hope it’s ok to quote the article here, because I really want to share the last paragraph with you…
The current psychiatric model has no way of acknowledging treatment failure – failure can always be blamed on the patient. No wonder there is so much hostility. It is time to step across the divide, accept that patients are telling the truth, and start giving them a chance to get better.
The next sensible step would be for whoever happens to be running the shambles that is our benefits systems to accept that people with M.E. need financial support, especially when they first become ill, because forcing a seriously unwell M.E. patient to entirely support themselves regardless of their inability to do so makes recovery at best unrealistic and at worst impossible (I speak from experience).
There is so far still to go. SO FAR. But articles like this give me hope. They help me to feel like maybe things might have started moving in the right direction, finally.
Blessed Mabon, to those who celebrate it. Its a time to give thanks and when I think about what I’m grateful for in life, I always find myself returning to the people I love.
I am deeply appreciative of the family I was born with, my wonderful husband and the friends-who-have-become-family I’ve adopted along the way. Having people in my life who understand the various weirdnesses of living with a chronic illness makes even the darkest days brighter. I’ve made some lovely new friends over the past few weeks as well, which is another blessing…finding more hearts and minds to connect with, and hugs and smiles to share.
I’m currently in the midst of preparing for the Samhuinn Fire Festival, which happens in Edinburgh on 31st October. This is hard work and rehearsals etc generally take up all my able-to-get-out-of-the-house time (‘all’…about twice a week for a few hours!) for a couple of months, but it’s truly amazing to have the opportunity to be part of something so incredible and to celebrate my favourite time of year in such an epic way.
I recently read this lovely poem on Facebook about some of the ‘cures’ that people often tell those of us with M.E. that we should totally try because AMAZING MIRACLES OF UNEXPLAINABALE WONDER! Annoyingly, I can’t embed the post here (WordPress doesn’t seem to like Facebook’s embedding code) and I can’t republish the poem because I don’t actually know who wrote it and being an artist, it would be hypocritical of me to republish someone else’s work without permission or credit. If you’re on Facebook, you can click the link above and read it though. And you should, cause it’s damn good.
When I saw the poem, it made me smile in a kind of sad way. Thing is, some of the stuff mentioned (and lots of other alternative/complementary) therapies and treatments can or may help with some symptoms for some people to a greater or lesser degree, which is great. Anything that helps at all is a positive thing (providing you can afford it, which is another issue altogether). But they are NOT cures.
I wish people would realise how insensitive, frustrating, upsetting and offensive it is to hurl ‘miracles’ and long distance ‘science’ at people who have a chronic illness for which there isn’t currently an actual medical cure or consistent, reliable treatment.
There are few things in life that grate on my nerves more than the whole “I heard about this person who had M.E. and they did this and got a bit better” thing. By all means, share with me actual information, statistically reliable scientific studies, empirical evidence, the specifics of exactly HOW a certain treatment can reduce certain symptoms, not just vague statistical suggestions of correlation with no proof of cause and effect.
But please remember that M.E. symptoms tend to increase and decrease in severity at times over the course of days, weeks, months and years. Some people even spontaneously recover. Some people never do. People who have this condition know a lot about it because we actually live with it, and believe it or not, we already do everything we possibly can to improve our situation because there’s very little reliable help and support available.
As soon as people start with the ‘miracles’, I switch off. Because switching off is the refreshing alternative to feeling angry and upset and sick of people assuming that they know more about the condition that I’ve lived with for almost a decade than I do, simply because they’ve read something somewhere. The miracle is that I’ve never actually punched anyone over this yet.
I’m currently recovering from a glorious weekend away camping and meteor-watching with friends. The Perseids meteor shower is visible in the Northern Hemisphere at this time of year, so we headed away from the lights of the city to check out the beautiful sky. I’ve been looking forward to this trip for absolutely ages. Even though it was only two nights in a tent, it was my ‘summer holiday’ – only being able to work part time means not much money which means no long or foreign trips, but closer-to-home stuff is still awesome and I had such an amazing time.
We camped in a place that enabled me to park the car really close to where we were pitching our tent, which was great. We had a cooking area set up, and a fire pit, and it was all very close together. The whole thing was really convenient and not having to do much moving around meant that I was able to stay for both nights and really enjoy the good company without being too exhausted.
The most physical activity I did all weekend was fire spinning, which I’ve never done before. It was incredible! I’ve been spinning poi for years and was hoping to be able to get fire poi before the trip, but couldn’t afford to. A friend brought along his fire staff so I got to have a go with that instead. My shoulders and arms are absolutely wrecked at the moment, but it was so worth it. I can’t wait until I can get my own fire toys now!
We got home yesterday afternoon and I had a shower, slept for most of the evening, woke up and watched a film, then went to bed and slept for almost 12 hours. When I got up this morning there was not one part of my body that wasn’t aching so I rubbed tiger balm into all the parts I could reach and made a comfy nest on the couch so I could catch up on all my online stuff, aided by much coffee.
I’m working every evening this week, but cause I don’t have to be up and functional early in the day I’ll have plenty of opportunity to catch up on rest, and have a second sleep in the afternoon if needed. The last couple of weeks have been pretty rough. I had a bit of a crash and even managing to sit up and work for 4 hours a day was very difficult. I get really down when I can’t do anything apart from work and sleep. The world starts to feel uncomfortably small and kind of claustrophobic so I was happy to be feeling well enough to go camping and recharge my batteries with some outdoors-ness.
Also, seeing those meteors worked wonders for my perspective. It’s hard to feel pissed off with life when you’re watching epic things shooting across a clear night sky. The Milky Way was visible too…what better reminder that no matter how big every-day problems can feel, we are only tiny parts of a vast and beautiful universe!
Having to get up and do stuff after not having as much sleep as I need doesn’t sound like it should be a big deal. People do this every day…waking up to an alarm clock or to loud noise in the street, getting out of bed to answer the door when the buzzer goes off for the post, starting work earlier than usual due to a temporary change in shift patterns, having to go somewhere or do something that isn’t part of a regular routine.
Cause my M.E.-related pain tends to be a lot worse at night, even going to bed a sensible number of hours before I need to get up doesn’t generally guarantee a good night’s sleep, or enough sleep. I usually find it difficult to get to sleep because things hurt, and am often awake for a couple of hours in the middle of the night for the same reason. Being able to function the next day relies heavily on being able to get back to sleep for a reasonable amount of time after these pain-based nocturnal interruptions. When this isn’t possible, chaos ensues.
This is what happens when I have no option but to get up and get on with things after not having had enough sleep…
Everything hurts. A lot. It’s not just the usual dull ache and throbbing in my back and legs. Lack-of-sleep hurting involves that, plus sharp blasts of pain in just about every part of my body when I move or anything touches me, including clothes or the furniture I’m sitting on.
I am utterly uncoordinated. Getting out of bed becomes falling out of bed. Walking becomes an awkward combination of shuffling and stumbling. I trip over my own feet, walk into walls and doorframes, and generally do a really bad job at remaining upright. I get hurt. The picture below is what happened one day last year when my body decided that it didn’t want to walk across the bedroom and I fell face-first onto a wooden bedpost.
Even comparatively simple things become very complicated. I have spent mornings sitting on the kitchen floor knowing that there is a kettle, some coffee and a cup within reach but genuinely not being able to get my head around what to do with any of them in order to create something to drink.
Anxiety attacks. My body seems to go into fight-or-flight mode as soon as I wake up after not having had enough sleep. I have no idea why this is but it results in intense feelings of panic, hyperventilating and massive bouts of crying. It’s really hard to explain, but this is never an emotional reaction. It feels very physical and there’s no rationalising my way out of it. It even happens when I’m getting up to do something I’m really looking forward to. Everything just goes haywire and weird things happen in my brain as well as to the rest of my body.
And that’s just the start of the day. Everything that follows is ten times more difficult than usual, more confusing, more painful. Thankfully this isn’t every day, but it is a lot of days, and unfortunately it’s pretty much unavoidable. I do my best to give myself plenty of time to sleep as much as I need to (even with interruptions) and arrange my days so that I don’t have to rush anywhere shortly after I get up, but sometimes life doesn’t allow that to happen.
It’s a difficult thing to explain to other people beyond “I’m not very good with mornings”, which is often translated as “I’m lazy and don’t like to get out of bed” or “I’d rather stay up late at night doing fun things than get up early”. The reality is that I’m just trying to avoid situations where I’m likely to start my day with an anxiety attack and getting my face smashed up on a bedpost.
I’ve been reading some things online lately about thiamin (also spelled thiamine, another name for vitamin B1) having the potential to help with pain and energy levels in patients with ME, CFS and fibromyalgia. The information I’ve found is a combination of theories, very small studies and individual anecdotal evidence, and reported results range from no effect at all to life-changing alterations, both from people with thiamin deficiency and people without.
Dosages referred to ranged from 100mg to 1,800mg per day and there were mentions of patients with thiamin deficiency and also normal levels of thiamin. I have no idea what my thiamin levels are. I’ve always kind of assumed that my everything-levels are pretty much normal since I’ve had so many blood tests and never been told that anything found in those tests wasn’t ok, and in all the years I’ve been ill and seeing doctors, none of them have ever mentioned thiamin deficiency, testing for thiamin deficiency or taking thiamin as a way to possibly reduce symptoms. But then the NHS aren’t exactly at the forefront of ME research or treatment.
Over the years, I’ve discovered that it’s really difficult to find reliable information about things that may help with ME. Unless someone is standing to make vast amounts of of money from a ‘miracle cure’ (yeah, feel the sarcasm) that they’ve concocted, there’s actually very little detailed information out there. There is, however, a lot of trial and error, and a lot of “this did/didn’t work for me” from individual people, which can at least be a useful starting point.
Since thiamin is cheap and available in health food stores and I’m all up for trying inexpensive and readily available options, I thought I’d give it a go. I’ve done some research and discovered that thiamin, even in larger doses, is harmless (the body absorbs what it needs and the reset is expelled in the urine) so I picked some up from Holland & Barrett (thiamin, not urine). The only tablets they had were 100mg so I’m taking two per day in the morning to see how things go. Even when something is apparently harmless, I’d still prefer to start small and work up than start with a higher dose.
I’ve only been taking it for two days, but I’ll stick with it and let you know how it goes!