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Check out this post on the updated site here: http://jenny-marie.co.uk/on-a-new-diagnosis-and-trying-not-to-go-entirely-mad
Hello my blog friends, and any folks who may have landed here via other routes or sources *waving*
I want to have a little chat about something that’s plopped onto my radar recently in a most unwelcome fashion. It’s something I’ve been reluctant to have a blog about (which is rather unusual for me) because I’ve been having a cognitive grapple with it, deep in my cancerian shell; with what it means and what I should say, with how I should handle it and whether ‘it’ is even an ‘it’ at all.
I’ve moaned about various physical ailments on my blog (and IRL sorry folks lolz) since around August 2015. The story is a long, winding and rather dull one, but the crux of it being that after a veritable COMPENDIUM of blood tests and other pokings/proddings, my GP has finally run out of other tests to do and so has diagnosed me with chronic fatigue syndrome (aka myalgic encephalomyelitis if you want the fancy name, which lends the whole business a more serious and unpronounceably authentic air).
Here are a few of the super fun symptoms I have had (either long ago, for always, within the last 18 months, or just more recently) that fall into place a bit more now:
- flipping endless viral infections as a kid HELLO TONSILLITIS MY OLD FRIEND;
- a long-standing aversion to super bright light and a preference for lying down in a darkened room (see 2:02) as well as the darker seasons (this meshed rather well with my fondness for The Cure as a teen though was generally regarded as quite an undesirable trait by most, I fear);
- the ability to sleep for ten hundred million and twenty five hours, have two large cups of delicious strong coffee, then go back to bed for a long nap;
- a whole new 12 kinds of tired that I never even knew existed and won’t even try to explain because I could write 4,500 words on this alone;
- a tendency towards a ‘boom and bust’ cycle of DOING LOADS OMG MUST DO ALL THE THINGS I WILL BE ON YOUR COMMITTEE I WILL MAKE A ZINE I WILL HAVE A CAKE BUSINESS PICK ME followed by extended periods lying in bed riddled with guilt and self-loathing all while trying not to lose friends or entirely alienate the people who for-some-reason seem to care about me;
- a strong dislike for loud spaces with lots of chatting (buses, gigs between songs, that sort of thing) and a preference for sticking my earphones in and listening to rain sounds or other white noise;
- a truly feeble inability to do 75% of the stuff I always used to do before;
- various numbness and tingly fingers;
- random gastro symptoms including bloating (yay);
- a tendency to get jolly deep-down cold and to enjoy hot bubble baths perhaps more often than I should;
- a tricky time with lots of reading, processing ‘hard’ things like in-depth analysis pieces or journal articles, preference for ‘easy’ stuff like silly fiction;
- a realisation that I have become one of those goddamn people with GODDAMN SPOONS (the spoonie thing does make me go ‘uhhhhhh’ but at the same time I know it has a LOT of value see below don’t hate me I just wish we didn’t have to resort to such a silly metaphor to get people to understand and empathise with invisible illness/disability I have a cold black heart okay).
Ahhh there might be some other stuff my brain can’t summon right now. I guess you could more or less say that I have this array of symptoms that cause me to be an exceptionally flaky, unreliable and annoying adult human person. Yay? But this spoon business is actually quite handy for explaining how one can simultaneously appear a-ok to folks, and even do stuff like ride a bike or go out boozing sometimes, but also do stuff like take the dog for a walk instead of cooking a proper dinner, or having to forego stuff like taking the dog for a walk (and then feeling super guilty about it) because maybe I had to attend some horrendous 4-hour training session at work that day.
Energy becomes currency, but so does brain power, and it’s like the same currency, which is so weird. Anyhoo. I am freshly brand-new only-just early-stage diagnosed, so I’ve been doing lots of reading, watching YouTube videos, joining online groups, etc., and I’m keeping an activity and symptom diary so I can establish what my current baseline of activity and ‘doing stuff’ actually is. I know that I am very very lucky indeed to be pretty active compared to a lot of folks who have the same diagnosis and I try not to forget that.
I started tracking various bits and pieces a while ago anyway because I knew I was barely managing to keep on top of essential priorities and I wanted to ensure that I did. The only thing assumed in the top table above is that I have woken up, cleaned myself, gone to work and come home, and once a week that I have done some washing and a bit of housework. Everything else is up for grabs. So I try to eat well, limit coffee, have plenty of water, take all my meds and supplements, walk the dog, cycle if I can manage it (15 mins, twice a day) and try to do something fun (make nice dinner, blog, embroider) or see a friend. All else is completely off the table. I’ve quit my Masters degree. No more hobbies. Barely any socialising. One disappointed dog.
I wanted to write a little about how I came to this point, the diagnosis, how it made me feel, what the (huuuuuuuge) problems are with rhetoric (medical and social) surrounding the condition, and I dunno some other stuff I’ll know when I get there. Maybe this will help anyone else freshly diagnosed, or maybe others more experienced and knowledgeable than I will be able to offer some sage advice, because I know I have a whole lot to learn.
CFS/ME – diagnosis
I think the first concrete manifestation of ‘some symptoms’ began in August 2015. I’d been to watch Sufjan Stevens at the Apollo. Ahhhh, it was super. He was touring Carrie & Lowell and we had seats and it was a wonderful evening of beautiful sad songs. I had a sore tummy though and it was the start of loads of gastro symptoms that were gross and worrying and I had lots of undignified tests (including a sigmoidoscopy and that’s no fun folks, but I was praised highly by the doc for clearing out my bowels so beautifully in the days prior Ithankyou).
Eventually, after quite a few months, initial tests all pronounced me healthy of bowel. I was tremendously relieved to know I didn’t have bowel cancer or even a stomach ulcer, but I was still a bit worried by the whole business; lack of a diagnosis isn’t necessarily all that reassuring. At the same time I’d started to feel very tired, run down, and ‘brain foggy’. In the end I had to take a formal interruption of my MA because I couldn’t process or retain information much at all. I was more or less focusing all my energy on work and not much else. Having suffered from 95% manageable mental health problems for nearly 20 years, I spoke to my then-doctor, presuming that I was having a bad flare-up of depression. My mood was actually fairly chipper, but my energy levels were so low and I couldn’t imagine what else it might be. He tweaked my medication and sent me on my way. My symptoms continued.
Eventually I moved to a different GP practice and a B12 deficiency was diagnosed. I was treated with a course of injections which ended around January-February 2016. I felt marginally better, but I wasn’t experiencing the boost in energy and concentration that I’d been told to expect and hoped for. I carried on regardless figuring that my body had fallen into some bad habits and I just needed to shake them off. In the spring of 2016 I had a mega awful bout of viral tonsillitis that just Would. Not. Quit. for around three months. I remember sitting in the doctor’s office bawling my eyes out because this horrible thing would not go away and my tonsils were threatening to turn my whole body inside out thereby transforming me into a giant, pulsating tonsila de la meurte. Eventually my tonsils returned to normal, but my energy levels were back to Very Low. Those symptoms continued and I pestered my GP for another blood test to see how my B12 was keeping up. She humoured me with more tests, but all came back clear. More yay. In January 2016 I’d had a contraceptive implant implanted, and so in desperation I went back to my GP to ask if it could be removed, just on the off-chance it was contributing to any of the symptoms of fatigue. I actually saw a different GP to have that conversation and she very astutely picked up on my desperation and insisted on talking through my symptoms. So I bawled again, and ran through all my various weird problems and symptoms and she ordered quite a suite of blood tests. I did have the implant taken out anyway, but nothing much changed in the way of energy levels, etc. (There were hormonal and other effects, positive and negative, but I dunno I think there is something refreshingly real about PMS and re-connecting to your body in that way, but that’s a tangent.)
The ongoing and repeated tests that came back ‘U R SO HEALTHY‘ (blood count, B12 and other vits/minerals, organ functions, diabetes, glandular fever, coeliac disease, thyroid, loads more I cannot remember) had me feeling pretty miserable by this point. I was trying so hard to convince myself I was FINE and that I just needed to buck up and get on with stuff. It took one more session of me bawling at my doctor to land at the point I’m at now, which is the CFS/ME diagnosis.
Despite this, the symptoms had all become so jumbled in my mind that it was hard to accept. The prior messages of ‘you’re fine, just do more exercise’ lingered, and were at odds with everything I was trying to do and wanted to do. It was all kind of gross and miserable, you guys. I wanted to be a better dog Mum, a better student, a better friend, a better employee, all that stuff. So of course I did the sensible thing and disappeared into my bed cave and yanno watched 3 seasons American Horror Story on Netflix and tried to ignore the world which was Not Quite Fun and I don’t recommend it. I was in a proper head-whirl of thinking could it be
- (a) a strange new type of depression where my mood is actually pretty ok but I still want to stay in bed all the time anyway;
- (b) or is my mood ok omg do I feel rubbish because I am so tired or tired because rubbish OMG WOT;
- (c) a persistent B12 deficiency and blood tests that lie;
- (d) some other as-yet unidentified ailment;
- (e) a combination of all of the above; or
- (f) JUST ME BEING RIDICULOUS.
I pretty much kept on coming back to (f), and I still do that quite often, throwing the CFS/ME diagnosis out of the window.
What a CFS/ME diagnosis means
As mentioned above, I still quite often have the very real actual thought that maybe I am just a lazy arse that needs to pull their socks up after some bad health, and get back to doing adult life properly. Every time I get a burst of energy, I FOR REAL will think “what the chuff, looks like I am actually totally ok, what a KERFUFFLE, I guess I was just being lazy that whole time and actually I’m perfectly healthy but I just hate Doing Stuff and prefer to be in my bedroom all the time ever, fancy THAT!”
I really do think that thought, for serious. And it’s perfectly ridiculous, of course. I know what I’d say to someone else in my position, and I know what advice I’d offer them. But I don’t usually give myself the same level of understanding as I would someone else, and that story’s an old one, ain’t it?
CFS is a funny one though. One of the first things you learn is that apparently it’s not actually real (UM LOL) aka Yuppie Flu. And not only is it not actually real, doctors will often do a curious double bluff where they look you right in your eyes (in between the bawling) and assure you that it’s very very real, but that it’s sort of also all in your head (or is a series of learned behaviours) and therefore you can absolutely be ~cured~ through cognitive behavioural therapy and something called graded exercise therapy. So yeh that’s basically talking and exercising you riiiiiiight of it which gets a proper thumbs down from me folks, I gotta say, and it really adds a lot of extra confusion to an already rather confusing set of circumstances.
The Controversial Bit
Now I’m still a novice at the whole thing, and I sure can’t understand scientific papers very well, but I’ve boiled the whole sorry situation down to two causes:
- That no-one has yet discovered the cause of the syndrome, or even a way to diagnose it other than via ruling other stuff out, and very little $$$ is invested in biomedical research.
- That a scientific study (“PACE”) carried out in the late 2000s, and published in The Lancet in 2011, seemed to prove that CBT and graded exercise therapy (GET) would yield significant improvements, and consequently this advice was absorbed by the NHS (and other medical bodies).
While many folks insisted all along that these treatments actually did more harm than good, they faced an uphill struggle against their doctors and against Science™. After a few freedom of information act requests, hard fought and won, some have finally managed to start criticising the PACE study and its methodology with a little more oomph.
It seems that I’ve rocked up to the party at a funny old time, but perhaps a fortuitous one, in terms of treatment and outlook. In reality, it seems that very few people truly recover from CFS/ME, but I know that I’m super lucky to be as active as I am. And whilst it’s reassuring in a way to finally have an ‘excuse’ (I’m still finding it a bit hard to just say ‘reason’) for being so feeble and lethargic so much of the time, there is still the nagging voice telling me I’m absolutely A-OK super fine, and I just need to pull myself together and stop being so useless.
The ‘treatment’ method more commonly employed by long-time sufferers of CFS/ME is (ironically) called pacing, and it’s about knowing your baseline and limits, and picking and choosing what you do so as to maximise the physical and cognitive energy that you have. Those GODDAMN SPOONS again.
I still have lots to learn about a condition with a verrrrrry changeable reputation, and about which very little is actually known, but for now I am thankful that my friends and family and employer are all forgiving and that I can still do a reasonable amount of stuff. Unfortunately my GP has turned out to be….not so great. She’s very sympathetic that I’m suffering from this yuppie flu, but still thinks I can be talked/exercised out of it. So I’m taking a short GP raincheck while I figure out my approach, because refusing treatment would not do my reputation as a patient much good at all. It’s right back to gross and miserable, but hopefully I can find a way to keep my doctor happy, manage all these bonkers symptoms, and also not end up ten times worse….
If any of y’all suffer from CFS/ME I sure would be interested to hear about it, and if you have any advice or recommendations, please let me know 🙂
Quick disclaimer that if anyone is of a mind to tell me that smoothies/yoga/positive thinking can cure me then please don’t because I won’t know whether to laugh or cry for a week LULZ.