Feeling down

So, I think a couple of posts ago I was thinking of this situation I'm in, and for the last few weeks I've managed to avoid it, but it feels like it's rearing its ugly head again, so I'm going to blab on about it on here and see if I feel any less rubbish as a result.

I've talked on here (relentlessly) about my health issues as I try and sound them out, and cope with them. It feels like my doctors are finally taking it seriously, now I'm in the position of feeling light-headed nearly constantly.

They do limit what I can do as a mother. I'm not the mum who goes and takes my boy to the park, or plays games with him all the time. Sometimes I'm the mum who can barely move out of bed but I do because seeing my boy is important to me. On my worst days, I sit in the front room and just try to be near him while he plays, looking at him when he's close, trying to listen when he talks endlessly about his passions. On my worst days, I can't follow him, I pick up words and the general gist but it all goes over my head.

I know I'm lucky, still living with my parents, having them help out. It took them a while to realise that it's always going to have an effect ("Siobhan, I think you have fatigue, but I don't think it's chronic" "I've had it for seven years" *speechless response*) but throughout, they've always helped when I'm feeling weak, made suggestions to keep him entertained that are low impact for me, given me reminders when I needed them ("he has swimming on Mondays, not Tuesday now") - I am grateful for everything.

But I'm not the only one who lives at home still. And those who do can see my struggling, can see when I'm sitting on the sofa with a heat pad and a glazed look on my face because sitting upright is hard for me. I thought they understood just as much.

I'm not the only one in my family who has issues, but where I can be sensitive to them, I am. I thought that I had a good relationship with all my siblings, but I found out recently that I was wrong. That the sister I thought I was closest to can't stand me.

She said some really shitty things. Things that are unacceptable normally, but then throwing in all my problems and ... it was such a slap in the face (which is ironic, because as they were leaving her mouth, I slapped her in the face)

And now my parents have gone away, to visit my cousins halfway around the world - one of them is getting married - and it's just us in the house. I would be finding it tough anyway, to do ten days without support. I'm on the least amount of hours possible at work to balance it all, and make sure boy is always looked after, but that doesn't mean I find it easy to do all the cooking and washing and remembering the schedule all by myself. I would cope with it, however, if she wasn't there, ignoring me, acting like neither of us exist. She was the one saying the unforgivable stuff, how am I the one feeling this awful over it all? This isn't like falling out with a friend where you have a difference of opinion but still love each other and know you'll get past it, this is something I don't think I've ever experienced before. She blamed me for things that other people have done or said, and then acted like I was the bitch for pointing out it wasn't me, that she shouldn't be judging me without judging everyone who has actually upset her. My mum's reassured me that she was venting on me, and I could take that, if she hadn't crossed a major line.

Because as a mum, you worry constantly if you're good enough. You have the whole world, at some point or another, making a judgement call on how well you do. And when you suffer from a chronic condition and struggle with the basics but make sure there is a decent support system in place, you feel it even more. I feel guilty all the time for not being the mum to go to the park, or play Minecraft alongside the boy (I've been finding screens difficult lately, the brightness and the motion together sets off my dizzy spells). To have someone you love say that you're a neglectful mother when you already feel like you don't give your kid enough but do your best despite your obstacles ... I don't know a bigger stab in the back than that.

Writing tired

So, part of what I've been doing while not blogging is working out what's wrong with me. Aside from the obvious - looking back on past posts where I've mentioned being fatigued or otherwise sick, talking to people who have a condition whose symptoms I seem to match almost exactly - I drew the conclusion a while ago that it was Chronic Fatigue Syndrome, and I have visited the doctors (when I can grab the time off work, and it's in the week, and the doctors actually give me a frigging appointment, and I'm not so fatigued I can't even) but I get the feeling my regular GP doesn't believe in it. Awks.

Anyway, I have tried to keep on top of writing, even though I find it difficult. I was rereading something I wrote recently, and I could see when I was writing tired. There were so many silly mistakes, stuff spelled correctly that made no sense (he got up at walked of, for instance) because when I get tired my fingers jump over the keyboard and the scenes that are in my head won't turn off and ugh, I hate feeling so shitty all the time. I hate that it's so evident in the stuff I'm writing and I haven't caught it before. I think I always need a beta.

Bye bye

So, I don't know how many people read either this blog or my blog that had the second draft of my YA, but I will put this on here anyway. I've deleted as much of the other blog as is possible, so Uprooted is no longer on here.

It's not for any negative reason. I originally posted it to welcome beta readers to go through it and correct it as they saw it needed it. I knew it needed a lot of work.

But a few months ago, I went with Sarah-Jane to YALC at LFCC, and we had the opportunity to speak to an agent one-on-one. I know Sarah-Jane talked about her plotline and the agent was really enthusiastic, but with mine we talked more about technical stuff, about what I could do with a series if I'm trying to sell it. Her advice matched things I had heard at the Essex Book Festival Writer's Day last year, and things that I have heard other writers I admire say about their publishing process. So I need to really overhaul the entire story in order to meet the parameters they're setting in order for it to be publishable.

So for NaNo this year, I'm going back to the drawing board for Lamb and Carter. I'm currently thinking about what is important for THEM in the story, with the themes etc I would like in there. What can stay and what can be thrown away.

Because as a writer, you do get precious about your creations and your characters. Sometimes I think it can be a major hinderance. You can't be precious about every element. You have to pick your battles. If a sub-plot is damaging to the overall point of the story, then there's no need for the sub-plot. The last few fanfics I've written have given me some great practice with writing a story that stands alone and focuses on the main agenda, so I'm hoping that this will help me go ahead with Lamb and Carter's story, even if I have to strip a lot away. And just because the story is getting stripped, it doesn't mean I no longer care for it. I care for it more than ever, I miss Lamb and Carter so much. But it's because I care about doing their story justice that I'm determined to do whatever it takes to get it right.

back to blog

Hi blog, how've you been doing? I've been missing you a lot lately. What've I been up to? Well ... maybe in the next few entries I'll manage to cover everything.

I went to YALC a couple of months ago, got talking to an agent. She gave me some good advice on how to tweak Uprooted but it means a complete rewrite. I think it'll help in the long run though. I miss writing Lamb and Carter, but I don't regret the break from them because what I've been doing with my fanfiction is really great prep work for the advice the agent gave me.

I've been working a lot, doing conventions, spending time with Boy, thinking about booktubing. Currently I'm moving into my brother's old room so when I'm done and set up I can start :)

I'll go into this more another day, I'm sure. I have to go back to work after my break now. But we'll talk later, right?

mental health

So, as you all know by now, I don't have great mental health, a result of my body being starved of oxygen from poor blood flow and partially collapsed lungs way back when I had TTP. Sometimes, I think I can cope with day-to-day stuff despite it, but increasingly I'm feeling like it's really limiting me, or holding me back.


Even the most simple tasks can escape me, be too challenging or just not occur to me. Things like getting my son ready for school, or doing a simple laundry load, I need encouragement or assistance by my parents still.


I'm not trying to moan, or make people feel sorry for me. I just feel so frustrated by it all, and out of my depth for things that should be commonplace. I remember when I first went into remission, I was determined to beat it, to make what happened a footnote that I would barely remember. But sometimes, it's the only thing I remember. I'm learning - very slowly - just how big an effect this has had, how ling it will continue to dominate my life. You can't escape a handicap no matter how much you try.


Sometimes I don't realise just how it affects me until a situation occurs where I then can't cope. I might have been having a good day and then one question can ruin everything. Because I struggle with the answer. Because I can't figure out the task. Because the question places some kind of stress on me that renders me useless.


And I'm not unintelligent, I was always gifted, and even now when I'm confused so easily I can still ace a quiz. But where I used to coast so easily through these things it makes it so much harder to deal with.


I admit, sometimes I wish I could just cave completely and research whether I'm technically disabled on this front, go through the system to find out if they think I am. But then I'd feel so guilty, or lazy (this is a personal thing. I am not in any way applying these thoughts to my disabled friends) and I can imagine them saying no I'm not, and I've worked since my sick leave so obviously I can manage. And I love my job, but I know I'm not very good at it. I forget the simple things there too, like asking customers obvious questions.


I think mainly, I just wish it wasn't like this so much. That I could remember the basics and not have to rely on others. My parents are getting on, you know? They shouldn't have to be my carers. They shouldn't have to be my sons other parents.


Part of the reason I haven't blogged so much, on top of my big writing projects (which I am also struggling with) is this feeling, and not being able to think of topics. And I probably sound really down and for the most I'm not. I'm just increasingly frustrated by how limited I feel. I think that feeling fuels the problem and I'm stuck in a cycle right now. I don't know how to break it.

2015

don't worry, I'm not about to make wlempty new years resolutions like "I will blog more" (truthfully, I have missed blogging but have been consumed by this companion story I've been working on which is almost over now) more, I'm making a plan of action for the foreseeable future. Such as:


-not spending anything superfluous in the next few months. I have a shit ton of expensive things to pay for - a new car, a concert with boy, my BFF's hen do, Asylum 14, BFF's wedding - and not much time, with minimal hours in which to pay for it.


-clear my old laptops. Sell them.


-ebay my nice clothes that no longer fit.


-car boot stuff from Primark etc.


gahhhhh, I fucking hate money!


other POAs include:


-finishing the companion piece.
-finish other outstanding pieces.
-work on my WIP.
-actually sodding publish.


... so, not many goals.

Illness

I chose a timely moment to write this, my boy is home from school with a stomach bug (you wouldn't think it right now, because he's drinking juice and watching YouTube, but my car stinks of stomach acid from where he puked last night) but ultimately, my motivation for writing this comes from ... you probably guessed. The Supernatural fandom.

Overall, it's a fantastic fandom. Unless you're in it, you probably wouldn't understand totally what it's like, and don't worry, I'm not going to sit here and bang on about it. Any more than I have done anyway.

One of the things I've noticed - and I've noticed it in other areas of my life too, but this one more so perhaps because I met about 500 people, all at once - is that a lot of us do have health problems. Fibromyalgia, MS, BiPolar, arthritis, Aspergers. We're a sickly bunch.

But despite this, it's proportional, you know? I mean, when you consider that fibro, like TTP, has only really had an advancement of study in the past few decades and more information and therefore more diagnoses are becoming prevalent (and in the case with my TTP, it means more lives are being saved so more people are TTP survivors).

However, I have noticed a trend in the last few weeks in the various groups we're all involved in. A trend where people claim that anxiety is a disability - I mean, it can be, but I'm referring to those who have never had a problem before, or who don't seem to have any issue with shouting about their anxiety from the rooftops, which seems like an oxymoron to me. Those people definitely don't have the medical connection - with the announcement that Jensen will be at the next Rogue Convention (fucking meeting DEAN!!!) it's increased sporadically.

I'm sure I've mentioned on here before my own dealings with social anxiety, where I couldn't even hand in my TTP sick notes and my parents had to do it, where I have to talk myself into the simplest of things. One of my best friends has gotten married in the interim of my postings, and I was terrified of going. Someone reposted something on Facebook that I included into my mantra to help me do basic things ("Chuck it in the fuck it bucket and move on") but there is something key here. My social anxiety is a result of the trauma I went through. It's tough, it can seem debilitating, sometimes that fuck it feels like I should be saying 'fuck it, who needs it?' but most importantly? IT IS NOT A DISABILITY.

Like friend A with fibro needs a rest every couple of days and she can live a semi normal life. She has a friend with recurring Lyme disease who developed CFS and he is only functional a couple of days a week. Friend B with fibro has to rest up for a few days after doing anything, because her body will fight her if she tries to do any more. Like friend C whose son is Aspergers, and friend D whose husband and children all have different things wrong.

I'm not trying to shit all over people's problems. I loathe it when people shit all over mine, when they think I'm whining about being tired because my brain damage gets triggered by my fatigue so when I'm feeling like I cannot go on and the only sense I can make is to say "I'm tired". But there is an inherent difference between being medically unable to function and something that's tough but doesn't require medical assistance. And people should understand the finite differences, and act accordingly.

Why is this annoying me? Because I can see a couple of things happening. Perfectly healthy people with no restrictions are suddenly considering asking for disability access, all because Jensen is coming. I get it, I do, he's a huge actor and that makes you anxious which sets off the cycle. But consider this - your anxiety to get five minutes up the queue to see the man triggering your anxiety will have a knock on effect for that Aspergers kid who can't cope with crowds. It's going to make that girl with fibromyalgia sit out something she wanted to do because she cannot cope with the increased access line. They got access to avoid what your anxiety is causing. The knock on effect is that your anxiety makes a tougher con for more people, including the staff who are helping to make the experience a good one for everyone. If it is so important, why did you not buy a ticket early and seek out an upgrade? I know of one upgrade who will be getting access because she has genuine issues ... and that's it. Out of 150 of us (approximately).

What else can I see? I see people using it, going on about it constantly, making it seem like a big deal that they have anxiety and so need pity. No. I'm sorry that you have these issues, I do too, trust me. But there are worse things. There's being told you're brain damaged for a start. There's doctors telling you that the things you took for granted, you can never do again, like walking, or being fully independent, or having children. All because of a legitimate disability. I, and others, battle constantly to even try to function as normal, to do things like we used to because dammit, it's hard enough now without those pleasures life used to give us, without people wanting pity for something others consider a side effect. Yes, it irritates me. I get that it's a big portion of your life, and this will be harsh, but please understand what it's like for those of us with real issues who have to read this over and over. It is minor. And it sickens me that this is the excuse that will be used by so many people to try and get that much closer to Jensen. It makes a mockery of the system, and of those people who are so restricted by their legitimate anxiety that they can barely leave the house.

So reconsider. You have over six months in which to do so. Is your anxiety really so strong that you cannot even go near the crowds (have to wonder why you booked for such a notoriously busy convention, personally) and must have access? Is it general or Jensen-specific anxiety? Does someone else need this more than you? Are you being selfish here, or is it so bad that it's a necessity?

And for the record - no. I wouldn't consider access. I didn't spend seven months of sick leave when I first went into remission fighting to get my brain back and function again to go on disability, so why would I try to access that now? I've done two cons and know what I can cope with (lesson learned at A13: I cannot stay up drinking until 3.30 in the morning and then get up at 5.45 and expect to feel well at all. I went straight from still drunk to hungover to fatigued-and-nonsensical) and know that I don't need it, not when that boy in the wheelchair does. Not while that man's on crutches. Not while that girl is saying she has arthritis. Live within your means, and remember the convention is for everyone who paid a ticket, and not just you.

/end rant. This is the most I've written all day. Whoops.