Fibro Warrior: Leo @Fibro_boy

This week I’m sharing the story of another #Fibroguy, well actually @Fibro_boy as he calls himself on his blog and social media. His real name is Leo Elijah Cristea, and he’s from the UK. As you are about to discover he is a young man who is much wiser than his years.

Give us some basics…
Well, firstly, I’m a geek and book nerd. After that, I’m a millennial – old enough, to have done university, young enough to still need to rely on ID – and I’m living with my brother, who also happens to be my carer, partner in crime, and my best friend. I’m also an aspiring author, a blogger (Jet Black Ink, The Secret Life of Fibro Boy and Shikkeureo!) and reviewer, and a staff writer for one of the biggest new fantasy communities out there. Fantasy is a huge part of my life and I couldn’t live without music. I’m also pansexual, Wiccan and definitely on the side of the planet when it comes to politics (vote Green!). Add in the fact that I’m an extremely enthusiastic Final Fantasy XIV player, a cosplayer and that I love Asian food, languages and fashion, and we’ve almost got Leo in a nutshell. A big nutshell.

When it’s all written down like that (those being the basics), for someone who can’t do much and never has any energy, I do quite a lot and have a bucket-load of passions that I don’t let my chronic illness touch! Incidentally, I’m also male. Maybe I should have started with that, since there’s the myth that guys with Fibro don’t exist, but hey – don’t believe everything you hear.

There's a myth that guys with Fibro don't exist. I'm proof we do. via @Fibro_boy Share on X
When were you diagnosed?
I was diagnosed in autumn of 2013 and I’ve been officially considered “disabled” since 2014. Though if we’re counting a pretty certain self-diagnosis (which we should, since I was correct in the end), it should have been two years before that. Only, due to issues separate from the Fibro, I wasn’t able to see a doctor to kick start the diagnostic process.

What lead up to your diagnosis?
Lots of Googling and symptom checking and more Googling. I went to a doctor and was not taken as seriously as I’d have liked (was given vitamin D pills and suggested physio, which I refused due to both pain and social anxiety). I saw this one doctor at the hospital (referred mainly for knee pain) who became visibly angry with me because I winced in pain as he examined my knee, barely applying any pressure at all. Obviously it hurt more than it “should” have done. I remember him saying, “You do realise I’m not even applying pressure?” He was annoyed and wrote a begrudging suggestion of hypersensitivity on a form and sent me on my way. I didn’t go to the next appointment.

Ultimately I went back to my GP and, after finding more solid info on Fibro, I gave the doctor a condition, and together we did the rest. I was referred to a specialist and diagnosed on the day of seeing her, after blood tests had already both ruled out other things and indicated some kind of inflammatory condition.

It was slow going. It was only when I started looking into chronic pain illnesses and talking more openly about how I was feeling that I realised I’d been fixating only on certain symptoms, naively assuming that others were “normal”. This was because I’ve had many of these symptoms since late in secondary school. I’d always been tired, always had less energy than everyone else, always had aches and pains and sleep disturbances – at least, I had for as long as I could really remember. In more recent years I have quite vivid memories of sitting at my desk, my arms and shoulders burning and the pain travelling down my arms, making my fingers tingle with pain, and assuming it was just how I was sitting, or that everyone felt like that sometimes. Much of this internal consideration of my symptoms likely comes from the fact that I have High Functioning Autism, so my brain just processed everything differently. Eventually the word “Fibromyalgia” popped up and kept matching up, again and again, until it seemed blindingly obvious that it was Fibro.

What was your life like?
Much the same as it is now, only now I have more cats, use a wheelchair (so really, I’m a young Professor X – with the hair and the English accent, and maybe with the superpowers!) when out and about, and feel less guilt about not working or looking for a job. Due to my extreme social anxiety I wasn’t working and wasn’t seeking (or

I feel I may have damaged myself by not living like a #spoonie earlier. via @Fibro_boy Share on X

How did your family initially handle your illness?
At the very beginning, before it was diagnosed: terribly, just like me. We didn’t realise I had to make the rules, that I had to be careful and rest and do all kinds of other things to make life easier for me. Simple things, like which chores I could handle and which were big no-nos. We were blind to the reality of it all, but not deliberately. We were just clueless. After the diagnosis, things began to change – but only as quickly as I could let them. My brother is always there to help, but he’s not a mind reader and he does need my input. I’ve been learning in the last six months to really accept the limitations fibro imposes, but also to find ways of working happily within those boundaries. Luckily, throughout it all, both pre-diagnosis and post-, I’ve been understood and listened to. Nobody ever questioned my pain.

What do you feel is the most challenging aspect of Fibro?
Striking an even balance between getting enough rest and maintaining a sleep pattern. It’s difficult. The struggle looks something like this image.

I’ve since learned how to manage this, but it’s difficult. There are strict rules I need to obey regarding rest, even during flare periods. They’re not ideal, but it prevents the chance of aggravating my “fibrosomnia” further and triggering periods of depression caused by feeling my life is just slipping past me, whilst I sleep, sleep, sleep.

Regardless of how tired I am, I cannot sleep “too much”. I absolutely cannot get up in a morning and start my day later than around ten-thirty. Whether I went to bed early or late or slept well or slept very little, this is the case. Some nights when the fibrosomnia is bad, I’ll not sleep until three or four am – and the rule still applies. It’s incredibly difficult, especially when Fibro fog hits badly in a morning and I hallucinate conversations and interactions, or fall back asleep almost immediately out of sheer exhaustion. I also cannot nap, as this unbalances the scales.

Going to bed after a certain time or not occupying myself enough during the day also contribute to anxiety before sleep, which triggers fibrosomnia. Night anxiety pangs can ruin my chances of sleep and threaten the delicate equation.

Inevitably, the balance shifts and to right it again, my only tried and true solution is to pull an all-nighter, remain awake during the entirety of the next day, and respect my usual bedtime that night. Sleeping too early will also destroy this balance. Pulling the all-nighter is extremely difficult, usually triggers Fibro fog that lasts all day, and exacerbates the pain. But it’s all I know how to do, and it works. So I do it when I need to.

In addition, managing to engage myself mentally enough during a day, so that my mind doesn’t pull overtime and trigger night anxiety, is also difficult when I’m always exhausted.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have severe Social Anxiety Disorder and Social Phobia (vastly different, though oft lumped together) and in many ways, the Fibro helps me feel less guilty about not being a normal, functioning person, by giving something physical as a reason for being unable to do so many things. Without the Fibro, I am still considered unfit for work. It’s not ideal that the Fibro assuages some of the guilt, but at least it’s good for something! As mentioned above, I’m also an Aspie, so the Fibro adds a layer of complication to an already complicated tapestry.

What (if anything) have you found/ done that has improved your symptoms?
Technically being more active (regardless of how much it exacerbates pain—which is a lot) is one of the only things that helps. It tires me physically which helps with the sleep accounting. It does however, make the pain worse and triggers far more frequent flares, so it’s really all swings and roundabouts. Either way, being more active, both physically and mentally – accomplishing things – makes me feel better inside, which makes me stronger, and naturally in turn that helps me cope with chronic illness. In addition, cutting out gluten and dairy certainly haven’t hindered anything! I do admit to overdoing it without realizing, and I do pay for that—but it’s a learning curve and I’ve not really been at this very long.

I’ll improve and be a master spoon accountant soon enough. I’ve also found that true self-care and mindfulness of my illness helps too. Instead of fighting the days where it’s so bad I can barely function at all, I’ll settle, with my laptop in bed, or with my Kindle (I can’t hold physical books because of my hands and eventual shoulder-leading-to-back pain) and just, be for a while: curl up in bed with soft things, some tea, some music and just rest, thinking of nothing else. Add in a loyal cat or five, and it’s soothing enough that, even though it doesn’t change the pain, it changes how I feel about the pain. And that’s invaluable.

How open are you with friends & family about your illness & symptoms?
I’m incredibly open about my condition and my life with it. I talk about pain and the symptoms, even though sometimes doing so makes me feel weak and vulnerable, and even though sometimes I get the look of, “wow, that’s really bad!” when I’m simply explaining the intricacies of my day-to-day. There’s no sense in not being candid with those in my life. It would just cause problems in the long run and I’d wind up doing things I can’t or pushing myself harder than I can in order to seem more normal and less ill. And that’s just a terrible idea. I am chronically ill; that’s a fact. It’s not anyone’s fault that it’s not a visible disability that they can work around. They need a little help from me so I can get a lot of help from them.

Those who care about me need a little help from me, so I can get a lot of help from them. via @Fibro_boy Share on X

Do you blog about your illness? If so, what inspired you to do so?
I do for two reasons. Firstly, I’m an aspiring author; I write. Words are the most natural thing in the world to me, and I like using them, love to talk using them. I actually also love talking about myself as much as I love listening to others. It’s difficult to talk as openly as I’d like with the crippling social anxiety, but blogging is something I can (for the most part) do freely. I used to blog about Fibro and being ill on my original blog (used for anything writerly and reviewing books) but felt it added irrelevant clutter. So the natural choice was to designate a blog to the Fibro.

Second, I wanted people to know what it’s like being Leo, being sick every day and being a Spoonie. It’s about education and awareness. And when searching for info to help, being young and male I felt very alone in a blogosphere dominated by women; mums and wives and people the absolute opposite to me. I didn’t want someone else like me, someone young and geeky and at odds with the soccer mums and housewives, to not take their own condition seriously because it seemed like they somehow shouldn’t have it in the first place.

What is the best advice you’ve received regarding Fibromyalgia?
Technically, cutting out gluten. But, I was already doing that most of the time anyway. But after reading that it was heavily advised by a lot of people, I went the whole way. It’s not difficult, because bread is not my thing and I enjoy healthy food as standard. It’s difficult to source all the specialist replacement products in the UK, but I manage and whatever else, I intend to start making.

What was the worst advice that you followed?
I don’t think I ever have! I’ve never specifically looked into advice for fibro – I’m stubborn and opinionated and honestly think I know best because I make sure to educate myself about a subject as far as I can – so anything I’ve seen here and there, I’ve usually either ignored or nodded and smiled and gone about my business.

What is your favorite way to cope with your life as a spoonie?
This is a tricky question, since it doesn’t feel like I really do much different to how I did before. But I suppose I always try to make sure my comfort comes first. I make sure I’m safe. My Fibro is very, very severe and so the pain can be difficult to manage; positioning can be hard. I have a gaming nest set up in the gaming room, which is basically a single bed with decent mattress, smushed against the wall by the sofa, and piled with plushies and Japanese dakimakura.

At the end is my TV and PS4, on which I mostly play Role Play games, such as Final Fantasy XIV and Dragon Age. My brother games next to me on the sofa. There are bright walls and posters of bands I love, and tiny yellow fairy lights to keep the lighting dim. It’s comfortable, safe and I’m usually surrounded by cats. At the moment I start my day there, gaming a little, before collecting myself and pushing through whatever fog and pain to go and work at my desk upstairs. My gaming nest feels luxurious and safe.

Aside from this, when I’m having trouble with sleep accounting, there is sometimes nothing better than curling up in the dark, in bed, with wireless earphones and an audiobook from Audible playing. Books and imagination are the things that soothe me, so the gaming and the reading fit that bill.

What is it that inspires you to keep going, despite your illness?
Cue the cheesy Zen music, chanting to get to Nirvana and a waft or two of incense, but…life does? This is my life and I am a bright and unique soul on this plane of existence and I’m not going to simply cease to be everything I am or could ever be simply because I wake up every morning and sitting up is a struggle. I’m chronically ill; that’s inescapable. But it’s not the most terrible thing I can think of, and I manage. I think everyone should value themselves, believe down to their core that the world needs them because they are one of a kind, the only one of them there will ever be – so damn straight I should carry on walking forwards in spite of the Fibro.

Like I tell everyone else who ever needs to hear it about themselves: I am brilliant and unique and that’s reason enough. I often say I don’t have a choice, and of course that’s not technically true. But the choice was never even contemplated. I don’t know how to give up, don’t actually know what it would entail. Quite literally: what do people do, or not do, when they give up? Just… sit there? I’d get bored! Life is reason enough to weather most things.

What is one thing you’ve learned about yourself since your diagnosis?
That I am my own worst enemy. I overdo things so often because I convince myself that I need to do them and the connections in my head that would enable me to simply ask for something, are somehow scrambled. I’ll go up and down the stairs, hunting for something, instead of just asking. Some days this is OK, but others it really isn’t. Other times I’ll reach for a bottle of water, hurt myself by stretching, when I could have simply asked. It just doesn’t compute quickly enough. I’m not good at asking for things without feeling like I’m giving orders and despite the fact that I enjoy organizing things, enjoy being in charge, I feel guilty for it in this context. It’s frustrating.

Fibro Warrior: Leo @Fibro_boy Share on X

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Don’t panic. It’s OK. Never let anyone deny your pain, put you down, or make you feel small. Their behavior says more about them than it does about you. If there are people in your life who won’t accept you and your new limitations, then they are not your forever people. Ditch them. And make time for yourself. Self-care is important. But so is remembering that this isn’t the end of the world. Don’t stop doing what you love, or at least being somehow involved with it. Sure, you might not be able to do the exact thing you used to, but use your imagination—find something. Never stop. Head held high and keep on swimming.

Finally… thanks for reading to the absolutely non-laconic waffle that appears whenever I’m allowed near a blank page. Any Fibro warriors out there who feel like crap today—and tomorrow: it’s OK. You’re still fabulous.

If you’d like to enjoy more waffling from @Fibro_boy you can. He blogs fairly regularly at The Secret Life of Fibro Boy, which has both a Twitter and a Facebook page.