November Round-up #1: Medical

13228058_849461041825680_672486022_n (2)November’s been a bit of a weird month, but overall, a productive and positive one. After missing out on really celebrating Samhain on 31st October due to an appointment in London that was then subsequently cancelled (when I was already in London, and with no prior notice…), the month didn’t get off to the best of starts.

Traveling when disabled is never fun and never, ever easy. Let alone when going to London of all places, and not for leisure. It’s one thing to toddle to London for a convention (like Nine Worlds in August… which I realise I never actually posted about properly by writing up part two of the review—oops!) and another thing entirely to trek down for one day. For starters, staying in a hotel for one appointment that’s going to take maybe an hour tops feels a little like extortion, so, it was a there-and-back kind of trip. That would have been fine, had the appointment not been cancelled! Imagine turning up and them, NOPE, sorry, your appointment was cancelled and we didn’t even call, so sorry that you just came all the way here on a train and two taxis only to be told a clinician had called in sick. Yeah, it wasn’t pretty.

That whole thing messed me up pretty badly. It triggered a pain flare and I caught a cold, for starters. Moreover, it really upset me and drained all the spoons I would have needed to pace my month better. So it left me really struggling before the month even started. Fun.

The rescheduled appointment came through a week or so later, for the 1st December. I almost just rearranged it because, honestly, I just don’t have the spoons for this shit! But, I knew it would just be another source of anxiety, so I went ahead and accepted the appointment. Hopefully I can plan my energy better this time now I know that a day in London like that is utterly crushing. It’s also upsetting, you know? London is one of my favourite places and it’s now completely inaccessible for me. I can’t easily go to any of the places I want, having a wheelchair in London is so stressful and now I can’t just hop on the Tube, navigation is a nightmare. I’m usually pretty good at handling all the ways my life has been changed by my chronic illness/disability, but London’s still a sore topic that’s generally left ignored. I can’t fix it, can’t make London magically more accessible to me, and I’m not going to stop loving it any time soon, so really it’s best if we just don’t talk any more.

In other medical news, after being told I needed an intensive course of B12, followed by a course of folic acid (in that order, else nerve damage was a real risk), I needed to schedule in five intramuscular injections with the nurse. I don’t go to my surgery; I’m lucky enough that Dr S comes to see me (in his lunch break) and I can avoid the awkwardness and distress of having to go and be at the surgery. But not this time. Dr S couldn’t do these for me and after a bad experience with the district nurse’s attitude, it was easier for me to just suck it up and go. It wasn’t easy, but at least they’re done, and 3/5 times it was the Nice Nurse instead of the Kinda Bitchy Nurse. Unfortunately, the Nice Nurse hurt when she did the injections.

I wasn’t expecting anything to suddenly change or even improve through the B12 injections—and I wasn’t wrong. No increase in energy, no reduction in pain, no nothing. Sure, my body needs that stuff so that’s a positive, but that’s all that came of it. What I’d like to know more is why my B12 levels were so low in the first place and what we’re doing about tracking it. Buuuut, since it’s one of those things where I expect to have to insist to the Dr that the injections made no difference, it’s not something I’m looking forward to.

Honestly, I’m just really, really tired of trying to approach doctors from a million different angles to get them to listen. And after the rheumatologist said one thing in a letter, another in person and a third, different thing on the phone, it’s hard to know what’s going on or where to start.

The run-up to the holidays is always a mixture of “yay!” and “oh dear sweet gods I’m already exhausted”, but I think that this year I’ll have more of an idea how to pace myself and I know how to prioritise myself and self-care better than I did last year. Aka, last year was the last time I’ll bother celebrating Christmas for the benefit of others, and will just stick to Yule and cut down on any additional stress between then and New Year. It’s frustrating, really, that you only learn how to pace properly, by royally screwing up with pacing to begin with. Because why would this stuff make itself easy, huh?

I’m going to try get into the habit of doing both a monthly round up and a separate monthly round up, hoping that it’ll help me get my thoughts organised about medical stuff and track progress, since I’m pretty terrible at tracking time and sometimes, before I now it, I’ve been meaning to arrange an appointment with the doctor for three months when I think it’s only been a week. Mostly this is because it’s just so damn draining trying to communicate with doctors—especially after the colossal waste of time the rheumatologist proved to be, who then simply left me hanging without even a referral elsewhere or a letter back to Dr S that did any good.

The nicer, fluffier and altogether less irritating update for November will follow soon. (Probably.)

Life in Leoland – The Reboot

2016-05-23 14.18.51So I’ve had this blog for a long time now, but between being diagnosed with chronic illnesses and becoming disabled, I ended up splitting myself between two blogs (Jet Black Ink here, and what was formerly The Secret Life of Fibro Boy). I did this for two reasons: 1) I felt completely out of touch with writing/reviewing, so didn’t want to/couldn’t talk about that and 2) I had the impression that I had to keep my chronic illness posts separate.

Now, I’m not actually terrible at blogging. I like writing, whether it’s conversational blather that nobody (bar me) cares about, reviews, musing, or serious talk about other things. But what I’m not great at, is separating content or keeping up with too many separate projects in different places. The attempt to keep the chronic illness posts away from Jet Black Ink probably resulted in this blog gathering a lot of dust and fading a little into the abyss. Of course, I managed to keep up with some reviews (mostly ARCs, for obvious reasons (mainly the crushing guilt of not reviewing them in a timely fashion, negl)) and so I didn’t completely stop posting, but I certainly wasn’t posting as I wanted to. I wasn’t really blogging.

But then on the other hand, I found that the way I was posting about my chronic illnesses and disability on The Secret Life of Fibro Boy actually started to distress me. Not only did I realise I was keeping these two areas of my life completely separate (which is so, so stupid of me: as if I can separate myself and what I love–writing, books, geeky, nerdy things–from the fact that I’m sick and disabled). This had a negative effect on me that I only noticed afterwards. I’d even separated my Twitter activity into @Leo_Cristea (Me) and @Fibro_Boy (My Illnesses). I was trying to be two different people. It… didn’t work. One of those accounts is now barren and bereft. Guess which one.

Originally I’d chosen “The Secret Life of Fibro Boy” to be a nod towards the fact that my illnesses are invisible, but before long, I think I realised it was more an expression of the fact that I thought I had to be secretive about my disabilities; that I couldn’t talk about those issues alongside the rest of me. That was a pretty damaging mentality.

That’s all out the window now: I’m going to blog every day throughout (Bl)August and aim for at least a weekly roundup of how things are kicking in Leoland thereafter. In the coming weeks I’ll be talking more concisely about chronic illness and Spoonie life, trying to give an insight into how to deal with it without losing yourself or the things you love.

New Wheelchair and Attempting #Blaugust

2016-06-19 20.09.11What better than a little incentive to start a) blogging more regularly and b) training myself out of thinking that each blog post I write needs to be five million words long and eligible for the Man Booker Prize?

Mostly I’ll just be blogging/reviewing as per usual, but I’m trying to get into the habit of more frequent posting about me and my life in general, relating to books, writing and disability. (Of course it remains to be seen if I’ll actually manage it,  but there we have it!)

But let’s start off with good news: I got my new wheelchair! After the very generous donations given through my GoFundMe whatsit, I got the pennies to buy myself a brand new wheelchair that is lighter, stronger (and therefore smoother and less wobbly) and comes with all-terrain mountain bike style wheels that promise to make parks and hills and all manner of previously-awkward terrain accessible again. I’ve only had the chance to use it a few times so far, but it’s so very different and immeasurably more comfortable than my old one. It’s light and feels less restrictive to sit in, which is definitely a bonus. It feels like there’s more me and less wheelchair, which is something I didn’t even know could be a thing.

I’m excited to take it with me to Nine Worlds Geek Fest next week (oh, gods, I’m not even close to being ready) and feel that if I am up to adventuring around London a little, I won’t need to worry about the terrain and bumpiness of unfamiliar and/or uneven streets.

I am incredibly grateful to anyone who donated, beyond words, in fact, since it’s always the worry that you’re asking for too much, isn’t it? Well, here I am with my new wheels and they’ve already started to make a noted difference to how my pain is managed when I’m sitting in it outside. I have high hopes for long durations spent in the ‘chair at Nine Worlds, where I’ll be in it far, far more than I usually am.

So, thank you again to anyone who donated or shared the GoFundMe link–you have my eternal gratitude and the promise that, should I ever actually regain my throne as the long-lost prince of the faerie kingdoms, I’ll send my house-cleaning legions of brownies your way.

And as for Blaugust? I’ve been meaning to blog more, so this seems a pretty good incentive to kick that frequency up a notch. The goal is to post more specifically about life in Leoland and navigating chronic illness and disability whilst also being an anxious creative who really, really sucks at one thing all spoonies need: rest!

Wheelchair Fund

wc01017_excel_allterrain_outdoor_selfpropelled_wheelchair (2)

This is the Excel All-Terrain Outdoor SP wheelchair

So I started a GoFundMe for a new wheelchair. I was nervous about doing so for a few reasons, not least of all: what if nobody cares? why should anyone give me money? I feel bad asking for things! Shouldn’t I just be grateful I have a wheelchair at all?

But then I went ahead and made the campaign anyway. Yes, I’m worried that I’m just one tiny person on the Internet, and not very well-known, even (especially?) within the chronic illness and disabled communities, so it would feel like shouting into the wind. Yes, I worried that I’ll be sitting here, afraid that I’ll be sitting here feeling fairly invisible and that those feelings of inadequacy will lead me down the familiar paths of yes, but shouldn’t I be grateful for my current wheelchair? and Isn’t it just vain or selfish to want a better wheelchair so I can do more things?

Well, in fact, no–to both.

Of course I am absurdly grateful for the wheelchair I have. It gave me a measure of my former capacity to live as I want back. But that’s all it gave me: a measureAdditionally, the wheelchair is old and rickety when sitting in it. It’s not comfortable, can exacerbate pain and is extremely limiting in where it can be wheeled/pushed. So yes, whilst it means that with this chair I can go out when before, I could only go out and stay in the car, it also means that I’m still unable to do even the most simple of things.

The current wheelchair I have is horribly unreliable on any terrain that isn’t a flat, even surface. And really, when was the last time you went into your local town or village (or any town or village!) and found a place where the pavement was flat, on each and every street? My town is relatively well-kept and even so, there are so many areas that I hate visiting because I know that I’ll be jostled and jolted and generally would rather avoid due to the wheelchair being ill-equipped.

Needless to say, many of the places I would love to visit are completely off the table for me. I don’t want to be unable to travel afield of home just because my wheelchair is inadequate. I feel trapped enough dealing with my social anxiety and the realities of disability and chronic illness, without also being limited by where I can go. I’ve been feeling very caged for a long time, with places like parks and new places (where I don’t know what the terrain is like, and therefore can’t anticipate how my wheelchair will handle it) completely inaccessible for me. It’s crushing to want to try to break out of my shell, finally, and to want to be at least a little adventurous, only to find that even now I feel that mentally I can, physically I still can’t.

It’s not fair that I can’t do even the simplest of things without the risk of exacerbated pain and even injury, just because my wheelchair is unsuitable. When I was given it through my doctor (which I’m still very grateful for, of course!), I was told it would potentially lessen my social anxieties by being a wheelchair that spoke of “an injury, such as a broken leg” instead of a disability.

Whilst I completely understood what my Dr was going for (and at the time, it was very relevant!), the reality is that I am disabledI’m not someone with an injury who needs the wheelchair for a brief period of time whilst an injury heals.

I am disabled and I need my wheelchair whenever I leave the house. And it’s starting to become more and more stressful because of how uncomfortable and unsuitable the wheelchair actually is. All I want is to be able to live as normally as possible, in relation to what that means for me. I want to be able to travel and explore cities and towns as much as I want to be able to go off road into parks and the countryside where I live.

Really, I just want as few limitations as possible. That’s all. I’m going to London in a few weeks to attend Nine Worlds Geekfest (which is my first convention since becoming disabled) and I’m nervous, because I don’t see my wheelchair holding up well in London, meaning I won’t be able to go to many of the places I’d like. The convention will likely be amazing, but I’ll still be very limited to just the hotel, which is kind of disheartening.

So if you feel you can help at all, please do! You’ll have my genuine and eternal gratitude for any help you can give–whether that’s money to help towards the chair itself, or simply sharing this post and/or RTing what I post on Twitter.

A new wheelchair will help change everything for me. Thanks for reading!

This morning was hard

img_20160519_123929 (2)Today is a perfect example of what living with a disabling chronic illness is like. I now go to the gym 3-4 times a week (day on, day off, day on, etc) in order to try and get some control back. It’s painful, but it helps, physically and mentally. The gym days are easy: endorphins make me feel good, man, and I have more energy immediately afterwards, even if I am also exhausted. Oh, the logic of chronic illness. I’m always in more pain after the gym, but once I learned that life with chronic illness is all swings and roundabouts, you just… get on with things.

Today is an off day for the gym. I don’t like these. It’s harder to get up, because I’ve nothing solid and practical to get up for. I’m paying a subscription for the gym. I know what the gym feels like. Plus, if I don’t go to the gym, I will feel horrible and upset after, so, off I go. The mornings where I don’t head out, are the mornings where the pain and fatigue feel even more crushing and I’ll do anything to just crawl back to bed after breakfast. Anything to just get away from gravity and vertical existence and away, away, away to the soft, safe world of my bed.

Only… if I sleep too late (after 10am—thanks, body) then my chances of sleeping later that night will be greatly reduced. I sleep between 3-4.5 hours a night, so you can see how less sleep is not an appealing option. So, I dragged my sorry, aching butt up and out of bed this morning, struggled through eating breakfast with incredibly sore and painful hands, and managed to only go back to bed for half an hour, during which I didn’t sleep, but rather, rested with an audiobook.

Then, much to my own surprise, I got up, got vaguely dressed (noteworthy when such things are a massive drain on spoons) and even did a little makeup. Mostly just gothic eyes of doom, because I’m fed up of not feeling like myself, even at home. So, when I arrived upstairs, mostly dressed (Captain America loungepants count as real pants, okay) and not looking entirely horrific, I was already so tired it wasn’t even funny.

Less funny when today, being an off-gym day, is supposed to be a few hours of Japanese study. This is when it really begins to sink in that Spoonie accounting is so very cruel. Because I got dressed and took a little more care over my appearance, I found myself with very depleted spoons, even before I loaded up Wani Kani to do my massive bundle of kanji reviews.

I did them, made some ridiculous mistakes on items I already know, and thus demoted about a million items. Altogether, not a good start and it made me feel like a failure. By this point, I already knew that any chance of actually moving onto my textbooks was not going to happen. Great. Way to go, Leo. You messed up. Because I had the audacity to get dressed and try to feel better about myself, I hamstrung myself and screwed up my chances of studying much today. Fabulous. I spend the entirety of my afternoons writing, because that’s what I am. That’s my life.

So I moved onto a few other mostly-manageable tasks, trying to squeeze what time and productivity I could out of the morning’s study session. I use Memrise, went through two small reviews for two courses on there, and then wrote some kanji in a handwriting practise book. By then end of that, I just wanted to cry, because my hands hurt so much. I have an app on my phone for writing kanji, but… it’s not the same. I’m never going to genuinely learn to write these things if I’m never doing it on paper. Bad enough that, because I find that studying is affected by brain fog, I’ve not yet really got deep into my textbooks. It feels like I’m simply not good enough; that it will never be enough.

And Japanese is not the only language I want to learn. Not by half.

So I was upset this morning. Hell, I still am, only I know how to forgive myself. It doesn’t take away the fact that each and every day, I have to make a decision about what I’m okay to not get done, versus what I can let slip. The writing will always, always, always be non-negotiable.

The Japanese is way up on the list… but so is my self-esteem. And if that’s helped, even a little, by wearing Real Person clothes and a heavy sweep of black-as-you-soul eyeliner, then so be it.

I know I push myself hard—too hard. But… what else is there? This is me.

That’s all there is. Me and my ambition and drive and my dreams. Yes, I could benefit from a few days here and there where I just rest, but honestly? I don’t know how to do that. I bore very, very easily. Very easily. I don’t like TV, I don’t play video games and the more I read, the more I want to write. Sure, I’d be able to sit and read for a whole day, but you can bet that the following day, I’d be writing on my phone if my laptop wasn’t in reach or I couldn’t get to my desk.

But that doesn’t mean that being sick, being disabled, doesn’t suck ass. It does suck. It sucks so very fucking hard.

Mostly I get on…I don’t know. Something. Stubbornness, determination. Other things, too, probably. But mostly I think it’s just the fact that there quite literally is nothing else. I would have to fundamentally change parts of myself to become someone who goes easier on himself, someone who rests more and doesn’t end up tired to tears at least once a day. And I wouldn’t even know how to do that.

It felt horrible earlier, making all those mistakes and realising that because I’d chosen one task that uses spoons I’d have to sacrifice another. That’s hard. It sucks and it’s not fair and it’s hard.

But, I could spend my energy being upset with myself, being frustrated with the powerlessness to change any of these circumstances… or I can just take a deep breath, allow myself that single moment of sadness (because I deserve that; it’s mine and I am owed it by myself), before moving on.

It’s not a quick fix and no, it doesn’t take away the pain of it all. Physical or emotional. But it lets me keep moving, and I’ll take that.

Health Update: Blood Test Results & X-Rays

13228058_849461041825680_672486022_n (2)So I’ve been freaking out all last week, knowing that Dr S was going to call. After the blood he took for the tests last week, he said that he would not call if there was nothing new showing in the same tests (plus some more) that I had done when I was first going through the diagnostic process of getting the fibromyalgia as a Thing on my file. He said he would call if there was something.

And I knew he was going to call. I guess I know my body, and so I know that over the past few years, things have been developing in new and different ways. Also, at the time, I barely even knew what chronic illness was, let alone that you could be disabled by it, and so we got the diagnosis of fibro very easily and, due to my severe social anxieties, it was a perfunctory appointment with a specialist (once) that means we probably didn’t discuss things in full and might have ended up with more tests and other avenues to go down. Oh well, that ship sailed and even if we were out at sea for a while, we’re back on another, better boat now.

So, he called my brother (my proxy for life, negl) and he lost the signal due to weird Vodafone blind spot juuuust left of his desk. He said call for a phone appointment in the voicemail, and my anxiety skyrocketed into space. When we made the phone appointment for Thursday at twelve, I knew we’d be out with a friend helping with Operation: Be Yourself, so, my anxiety shot into orbit.

Anyway, he called and there are things happening!

I need to see a rheumatologist again, since the level of this one thing that relates to inflammation in the body used to ring in at a bit of a wishy-washy (but still sliiiightly elevated) 11ish. It’s now 48. Forty-eight. The waiting list for a rheumatologist is as long as the Amazon river. But, because Dr S is fantastic, he looked into a few things and if I get x-rays done within two weeks, I have a referral to an Early Arthritis specialist.

So! I got the x-rays done on Friday, since it was easier than leaving it for days and days and letting me get more and more worked up over the idea. Getting the xr-ays done was kind of a nightmare, when I thought it would be easy. Turns out he wanted my hands, feet, and my most problematic knee done. The hands and feet cooperated, more or less (though holding my hands in the position, flat as possible, turned out to be far more uncomfortable than I’d expected), but it was the knee that decided to cause problems.

I had to hold my knee straight, or “normal”, I suppose. Apparently, that isn’t what my knee does naturally, so, correcting it to that “normal” or “resting” position was very hard, and it triggered such bad pain it’s not even funny. I had a straight on x-ray done and a side-on one done as well. Encouragingly, from what my brother saw of the knee (and the little “oh” of surprise from the nurse) there seems to be something weird going on with my patella. All I know is the pain lasted way, way, way into the evening and night and did not quit for the remainder of the day. I went to sleep with the same excruciating pain triggered by the x-ray.

Which wasn’t great, but hey. The x-rays are now done and will be sent to Dr S, who will do his thing and get me that referral. I am not looking forward to it at all. It means more peopling and I cannot people, so it will be anxiety through the roof, stress skyrocketing, etc, etc. All the good stuff.

Either way, all the fussy parts are done, and I suppose the x-ray experience informed me of two things: the way I hold my knee, which I hadn’t registered before and also, the fact that holding my knee in that position messes with pain around my patella, as well as what feels like nerve pain at the back of my knee. And at this stage, any info to pass on is a bonus.

On the plus side, the nurse was very cute.

Health Update (which may or may not be about 18 months overdue)

So, I’ve not exactly been the best at updating things specifically related to my chronic illnesses, in a sense of: “This is what’s happening with my chronic illnesses opposed to my life with chronic illnesses in general”. So it’s a good time to do just that, since yesterday I had a visit from my (amazingly lovely) GP,  who really does take excellent care of me – when I’m able to let him.

The social anxiety thing makes it difficult to see him and I’ve been especially bad this time. I’ve noticed new/developing symptoms for maybe around eighteen months now (I know, I know!), mostly related to new pains that may or may not be related to the fibromyalgia or the M.E.

But I managed to arrange the appointment (always a home visit, because Dr S is literal stardust formed and shaped into a rather tall young man with knitted jumpers and very little hair) and then subsequently managed not to cancel it.

He’d been needing to do a medication review with me for some time, so we got that out of the way first. I’d already stopped taking Pregabalin, which I’ve now told him. He fiddled with another of my meds, increasing the dose slightly. Then we talked about the things I’ve been dragging around for almost two years (yes, I know).

I’d been hoping that, from this appointment, I’d be able to steer the conversation towards two things: the possibility of at least testing for autoimmune disease, and also, the suggestion of another referral back to a rheumatologist.

Both of these happened, without me needing to prompt the conversation, which is fantastic for my anxiety. We talked about my hands and my hips, but he examined only my hands since he knows touching me is difficult (he tends to leave those  examinations to the specialists so as to spare me a stage of prodding). He agreed that they seemed swelled and uneven.

Then the part I’d been dreading. The autoimmune discussion. I have what I suspect to be a malar rash that has been developing for some time now, and although I’ve read into it and have some ideas of what it might (or might not) be, I’m always very nervous of trying to say things directly to my Dr. I don’t want to seem pushy or know-it-all and communicating with people in this way is hard.

We mentioned the rash, he saw the rash (this was kind of big as I’d been increasingly wondering if I was imagining it or just seeing things that weren’t quite there, so for him to acknowledge it was a Thing was reassuring), and although it could be a side effect of something, it also might not be. So we’re adding blood tests relevant to autoimmune disease to the whole smorgasbord of tests to be done.

He wants a full range of bloods done, since we’re basically starting at the beginning of the diagnostic process to tackle my new symptoms, since he’s not happy with simply saying “It’s your fibro” and having done. That’s exactly what I was worried he would do! I’ve heard so many horror stories of people having one diagnosis and the Dr reusing to consider more.

But then if I tally up how many of these are in America… Well. There we go. Health system from hell and say no more! (Yes, I know there will be similar cases everywhere, but I’ve, only the whole, had excellent experiences with my doctors.)

We’re taking the bloods next week when he comes again, and depending on what they do or do not show, I’ll be referred again to the panic clinic I didn’t manage to attend, as well as/or another specialist clinic that might be more suitable.

I don’t know what I’m expecting to find. I think I have rheumatoid arthritis. But it could just as easily just be the fibro. Of course. But this was a condition ruled out by the first GP I saw, who unfortunately, was shit. Apparently I was “too young”. I expect that millions of spoonies have been told they’re “too young” for all the pain they report. It was never really explored as a possibility.

Well, now all I need to do is get through the blood test visit next week, and then try not to let my poor anxious brain magic up all manner of things that could be wrong, including but not limited to, proof of faerie blood and therefore revelation of my identity, some rare disease apparently contracted from a flying space unicorn that visits on a new moon, or, in fact, anything else outlandish enough that I can think of.

In related news, I’m not going to be well enough to attend an event I ought to have been going to, the Split Worlds Masquerade in Bath. I’m devastated, but I really should have known that an event in May was an oversight. Spring is the very beginning of flare season for me. So, I have three Mundane tickets that need to find new homes.  Naturally I’d rather sell these, even discounted, because they cost £90 for the three, but mostly I just want them to go to people will might use them. (If you are interested, just drop me a message via my contact form, or just Tweet me. Long shot, but eh.)

So, there we have it: new symptoms discussed and noted and thus behind the diagnostic process.

I have my vampire date next week, whereupon I expect to rather dashingly half faint after having gods only know how much blood taken. If last time is anything to go by, there’ll be enough for a vampire’s three course dinner.