While I am so thankful to have good days as well as bad, the unpredictability of lupus makes my life so much more difficult than I think otherwise. At least when things are more constant, you get a better feel for your limits, and are in a better position to make plans according to them. It drives me up the wall to make plans and have no idea whatsoever whether they can actually come to fruition!

Haha, don’t get me wrong, I don’t wish for more “bad days”! I’m just very bad at knowing my limits, and it’s the thing that my doctors get on at me for. I do have pain every day, but when I have those rare days when I’m managing to do a lot with relative ease, I don’t have the willpower to slow down! It’s exciting to have a burst of energy (by my standards!) and when you spend most of your life wishing for energy, it’s near impossible to think logically and not use it! Of course, depending on what I’ve done, I’ll be paying for it in the days that follow.

Then again, even on “normal” days, I know if I have an outing, I’ll have to pay for it the next day. I’m sure many other disabled people know of having to schedule your life around energy and pain levels and other events, rather than simply your time. I frequently have to refuse outings while I feel fine and able, even if just a short trip to the shop or something, if I have something scheduled the day after, because if I go out today, who knows if I will be able to get up the next day? It can be very tiring to have to think far in advance any time something physical comes up, and in ways it means I’m restricted further than perhaps I would be if I just took the risk.

The same thing is tough with mental health, of course. It sucks to make plans and then find out at the time that you have absolutely zero motivation to act upon them even if you physically could. But often, I find I have so much motivation to do something, but my body’s not having it! I often say that if my sister and I were one being with my motivation and her physical strength, we’d be unstoppable! This week she has a week off from work, and we had planned to really tidy out the bedroom and organize much of our stuff, donate much to charity, and so on, but here I am in bed with bad flank pain, plans out the window! (Now to find a way to convince sis to just go for it without me; I can sit at the side and motivate her, haha!)

I’m just kind of feeling annoyed with my inadequacy today, hence this post. I make plans with the occupational therapist to sort out my life, the chaos that is my bedroom in particular, but then waking up each day can put a halt to even small plans no matter how motivated I feel. I tell my physio that yes, I’ll make a schedule for the basic stretches and stick to it, but as the weeks continue, I realize it’s not as easy. Positive attitude can help, and I’m a stubborn person so I do often push myself too far because I’m determined to get something done, but if the body’s not having any of it, optimism can’t work miracles. It’s still a strange feeling for my determination to fail me, but it’s always a work in progress to listen to my body and not feel like a failure for saying “No, I can’t do that today”. It’s o.k. to be “selfish” and look after number one first!

(I still wish wizards would appear and clean my bedroom though.)

My struggle with chronic depression

Either a mental health issue or a physical one is difficult enough to cope with at one time, but having both can add so many extra problems to life. Many people with lupus or a similarly chronic condition develop depression as part of their condition, or due to the constraints their disease puts upon their life. I’m one of the ones who struggled with a mental health condition before anything physical came along. I wanted to write about my recent relapse, but as the post has turned out more a history of my struggles with depression, I’ll write the more recent stuff in another post.

It’s difficult to say when my depression started, but I know I was self-harming at about ten years old, before life got tough for me in school with bullying, before any pinpointable reason came along to suggest I was unhappy. That’s the thing with depression; it can be purely chemical, and so unrelated to anything that’s going on in your life at the time. My parents were naturally aghast, sure I was being bullied, or that there was another reason beyond “I don’t know”. I think my twin sister and I started quite curiously, and then she stopped, while I found it a reliable coping mechanism. I remember being very young, and I struggled even then with severe insomnia, and would find myself awake at night, hiding under the covers and just crying for no reason I could find. When I think about it now, I also used to have strange paranoid thoughts that “they” were always watching; I had to keep my ears under the covers at all times, and my teddies always had to be under the covers too, because if “they” saw the teddy, they would take it away when I was at school. Every morning I would make sure the teddy was under the cover, and I had some anxious days at school because I couldn’t remember whether the teddy was safely hidden or not.

When I got to high school, suddenly there were enough reasons to fuel my depression. While my twin and I were admired in primary school for our “eccentricity” – we were very creative, wrote and performed our own songs, and that sort of thing – in high school, all of our “friends” from primary school suddenly dumped us. I went through high school being very unpopular and picked on, and unfortunately I think for a long time my sister was caught up in it just through her association with me. I continued to be “weird” – the Goth phase didn’t help the ostracization! – and people either avoided me or picked on me. (Various doctors now think I have a form of high-functioning autism, but I haven’t been formally diagnosed. It would certainly explain a lot about my struggle with social interaction and more.) I was picked on for being quite a loner, for being smart, for being bisexual.

Of course, when I was 14/15, the lupus hit, and suddenly I was absent from school for such long periods of time, and when I did appear, I was pale, gaunt, sick. God knows what people thought. This meant I fell even more out of touch with the few friends I had, and became more isolated. By my senior year, I even had the 11-year-old first year students calling me “f****t” every day! By this point, the bullying didn’t really bother me, partly because I’d grown such a thick skin, and partly because I had my health to worry about, so much that I attempted suicide at 16 in desperation.

Life has improved a lot since then, I loved uni, and I’m much more comfortable about my “odd” social preferences. Still, the episodes of depression and self-harm continue, because as I said before, they come out of nowhere much of the time for me. More recently, I was seeing a psychologist regularly and am on medication. I’m doing all I can do for my mental health, but more and more both my psychologist and I have accepted that self-harm is likely always going to be a part of my life. When the urge overcomes me, my mindset completely changes, and no logic pervades it. Everything that I’ve agreed with my psychologist goes out of the window. I know that if I manage to overcome the urge (before this mindset comes, as is this point of inevitability), it only happens so many times before it culminates in a severe, dramatic incident, such as what happened in November 2012 when I was taken to hospital with cut wrists, refusing to talk or look at even my twin sister. I still couldn’t say whether that was a suicide attempt or not, and more likely designate it “parasuicide”.

But I struggle with the concept of allowing myself to self-harm, and saying that it will always be part of my life on one hand feels like me giving myself an excuse. However, now, if I get an urge, I try not to say to myself, “You will never self-harm again”, because I know it’s unattainable, and I will just feel more guilty if I break this “promise”. Similarly, I don’t count how long I go without harming, because if I ruin a year free of harming, I’m going to feel like a failure. My main coping mechanism at the moment is to tell myself when I feel the urge, “Tomorrow”. When I relapse with harming, it’s usually precluded by fantasizing what I want to do, and then planning what I’ll do, until a point where I move onto action; this is the point I say “Tomorrow”, or even “Later”, or “Next time I’m in the bathroom”. Sometimes this can prevent me from a proper relapse into actual harming; sometimes it just prolongs the inevitable. Something else I did this last time was to tell my sister relatively soon after that I had cut. Sometimes she can tell from my mood, sometimes not. But telling her meant I didn’t have the extra pressure of panicking about it being seen by anyone. I think it helps to tell anyone, even an online friend who can’t be there in person, because I feel it lifts the burden a bit. And rather than guilting myself about it, I think every day is a new day. I don’t tally how long I’ve gone; I take it one day at a time. Cliché, perhaps, but it does work for me.

I think it’s important to give yourself attainable goals, without feeling that it merely gives you an excuse to continue destructive behavior. I know that it’s personally far too reaching for me to say “I’m never going to self-harm again”, so I say “I’m not going to self-harm today“. My occupational therapist keeps telling me I aim too high when I see her, I say “I need to sort out my whole life”. The point is to start with bite-size chunks, short goals that are attainable. This week’s goal is not “Sort out and catch up on the entire backload of laundry”, it’s maybe “Take one bag to the launderette”. I know from experience that saying “This week I’m going to tidy up the whole bedroom, take my unwanted things to charity, and reorganize all my spaces” is simply setting up such a big goal that, even ignoring my physical state, will make me shy away and think “I’m not up for doing so much, so why even start?” But if the goal is “Sort out the books I don’t want and lay them aside to take to charity”, or “Tidy up one drawer”, you can do the task and then stop without feeling like you had to hold up the whole world. After all, putting off a big goal for weeks might mean even less gets done than if you tidied or did domestic stuff for only 5-10 minutes a day.

Anyway, this is my general experience with depression and self-harm. Separately I will write about the issues of the combination of a mental and physical health condition, and why this often still sets me back even when my mental state is clear and motivated.

Poop! The forbidden topic

And typically, I’m jumping straight in with the “TMI” posts! Poop and anything associated with it is such a taboo topic even though everyone does it! For people like me who have illnesses of the bowel, it can be a pain in the butt (pun perhaps intended!) that no one seems to want to talk about it, even within chronic illness circles. Well, as there’s no limit here, here we go!

The reason I bring it up is that I’ve been having issues recently with bleeding from the colon. Sometimes it’s been within the stools themselves, and sometimes I notice upon wiping. In true downplaying lupie fashion, I wasn’t too worried at first. As the weeks went on and it kept happening, I also noticed the stools’ color changing, and a lot of pain when going; as I have IBS anyway, it can be hard to notice when something is abnormal for me, but I decided this was.

When the stools became very pale beige and pencil-like, I decided it was time to get to the doctor, encouraged by my Facebook support group. The doctor was lovely – it helps that as time goes on, I shed any shame about anything medical-related! – and found nothing upon examination, which she expected. She has referred me back to gastroenterology, and I should expect an appointment for colonoscopy soon, which is pretty much what I went for! All I can think is that it can’t be as bad as an endoscopy, which I had near the start of my lupus journey, and chose to have no sedation and was soon regretting it!

As I try to be open about these things, I was talking with my niece earlier about colonoscopy and what it is, and she’s very amused at the thought of them “taking pictures of my butt”! She turned six last month. I’m trying to talk more about my condition and the effects in everyday conversation with my family, to help them realize how intrusive and permanent it is, rather than keeping quiet. It’s a balance between oversharing, feeling like I’m whining, and just openly talking about health and reminding them that these issues are ongoing even if I’m not talking about them constantly.

Anyway, hopefully I’ll get some answers soon, and it’s nothing to worry about. It could just be inflammation, or something more serious. Until then I’m just keeping an eye on things and noting any changes.

I think that in general we need to be more open about bowel- and poop-related issues! (Of course, it’s an individual choice, and you certainly won’t see this article popping up on my personal Facebook page!) I still remember the relief of finding a friend with severe IBS and being able to discuss all our horrible symptoms together. 🙂

First post – losing disability appeal

Apparently, if there’s anything this lupie does well, it’s procrastination! I set up most of this blog months ago, along with companion Facebook, Twitter, and Tumblr pages, did most of the coding, and yet never posted anything, thinking “I’d rather get it all set up first”.

As I lost my disability appeal last week, I wanted to write about it before I forget the details! I wasn’t expecting to be approved, as in the UK right now, many many people worse than me are being rejected for disability. I had a welfare rights worker with me from my local council.

The process itself was more informal than I expected, even though they did record it. In hindsight, I wasn’t as prepared as I could have been, and my welfare worker thought I was holding back, especially when before we went into the tribunal room, I told her I had relapsed with self-harming; she hadn’t heard about it before! So unfortunately, so used to downplaying my symptoms as I am, I didn’t really fight hard enough. I am reapplying, and will get help filling in my claim form by Citizens’ Advice, and if I come to appeal again, I’m going to be more forceful, I think. The tribunal didn’t really ask as in depth as I expected, but I could have been prepared with what to say when they asked if I have anything to add.

Here, there are two aspects to disability, care and mobility. Crazily enough, I couldn’t apply for mobility, as I’m not bad enough for the high rate, and apparently the low rate is more for people who have mental health issues with mobility, not being able to go out on their own or to new places, for example. So there’s no midway between perfectly physically healthy and the high rate! What I need more than the money is the various travel passes, i.e. the blue badge for parking, a bus pass for free travel, etc. However, these are only automatically awarded with high rate mobility. I will have to go through my occupational therapist about the blue badge, apparently. I was going for low care in the appeal, with the welfare worker saying this could go toward my bus fares.

I expected to be rejected, so it wasn’t too surprising. In many ways, I’m glad, so I can make a fresh start with the claim, as the appeal was not allowed to look at anything in between my claim over a year ago and the appeal date. By getting the help from Citizens’ Advice, I should be able to fill out the new form with the information they are looking for, and maximize my chances. Luckily, I’m o.k. with money at the moment; I have a bit of savings left, and I receive Employment and Support Allowance; next month I see a work adviser to see about getting me into work/continuing education at a pace I can manage.

Unfortunately, a negative experience while applying for disability for an invisible illness is common, and in my lupus support groups, I hear mostly rejections. But I won’t stop applying! It can be stressful, but recently I heard of someone getting an award after two and a half years of appealing. Never give up! I think they hope that people will simply back down after an unsuccessful attempt. Prove them wrong! 🙂