Sunday, May 7, 2017

Yes, You Still Have to Count Spoons.

I’ve been having a lot of trouble counting spoons lately. Usually when I start to have problems with this it’s because I’m feeling really awful, and scraping together enough spoons to do even the simplest tasks is hard. This time, it’s kind of the opposite problem. I’ve been really well lately, and when I feel good, I tend to forget I still have restrictions on what I can do.

Sometimes this isn’t such a bad thing. It’s okay to test the limits a bit – do a bit more, and if it turns out it’s too much, scale things back. But something in me seems to have lost the plot a bit at the moment, and I’ve been booking in things that would be hard even for a healthy person to do, as if I think I’ve become superwoman. I find myself thinking “It’ll be fine! I have way more spoons now!” No. No, actually I have some more spoons now. Not enough to do everything and certainly not enough to do 15 hour days (what was I thinking!)

Fortunately every time I’ve overbooked myself recently I’ve realised it’s not going to work, and managed to reschedule things without letting anyone down, but it’s caused a fair bit of anxiety for me in the meantime. As with most anxiety, there were many factors involved, including that I was late on getting my B12 shot this month, but at the point where I had to simply walk out on something because I knew I was about to have a panic attack, I realised I had to get things better under control. So, I’m learning my lesson and getting better at carefully planning what I take on so I don’t keep putting myself in that position. It’s made me wonder, though, what’s brought on this sudden inability to spoon-count for me. Part of it is that’s there’s always an adjustment period to having more or less energy, as you figure out exactly what you can and can’t do now, but I feel like there’s more going on here.

Well, the obvious thing is that there are lots of things I want and need to do at the moment. I’ve been given lots of awesome opportunities lately, and I’m loathe to turn them down, but that does of course have to be balanced against the commitments and responsibilites I already have. Sometimes making those decisions can be really hard. Saying “no” can mean letting someone else down, missing out on something you really want to do, or both.

The other thing that’s been playing on my mind a lot lately is a feeling of being a “fraud”. When I’m feeling well, it seems less valid to say no to things because of my health. I’ve had times recently where I’ve said no to something then thought “Wait, could I have done that? Is it true that I’m not well enough? Am I actually even still sick?” After getting my blood test results back a few days ago, I can say yes, I am definitely still sick (nothing to worry about – just quite clearly showed a flare) but there’s a niggly part of my brain that makes me start to doubt myself.

I know very well that if this was a friend rather than me, I’d be reminding them that invisible illnesses aren’t always consistent and just because you can do something one day doesn’t mean you can do it the next. None of that means it’s not real. I also need to remind myself that part of the reason I’ve been well lately is because I’d been doing a good job of taking care of myself. If I start taking on too much, and let the healthy eating slip (guilty) don’t exercise enough (also guilty) and forget to take my meds on time (yep, done that a few times too lately) I’m not going to stay well. I also need to remember that I’m not a fricken super hero. If it would be a lot for a healthy person to do, then there’s no reason for me, a non-healthy person, to feel guilty that I can’t.

So, I’m going to do better at counting spoons, and try giving myself a break and stop accusing myself of being a fraud. I’m also going to forgive myself when I fail at times, take on too much, and have to spend a day curled up on the couch because I’m too tired to do anything else. Sometimes that too is just a part of this process and gettting mad at myself is quite frankly a waste of spoons.

Thanks for reading,
Little Miss Autoimmune

Tuesday, February 28, 2017

A PART OF ME HAS DIED!

I wrote the post below a couple of weeks ago. At the time, I'd just developed some unusual pain and changes to my skin, and had had some abnormal test results, so was starting down the journey that goes with that. From there, things moved pretty quickly. An ultrasound showed what looked like a lipoma (a benign, fatty tumor) just above my hip. Usually these are harmless, but there were some abnormalities so I was referred to a surgeon. Within days I had received an appointment time for the surgery.

It all seemed super simple. It would be an easy procedure, all over in 45 minutes, and I would only need local anesthetic, rather than general. I kind of couldn't believe that for once I had something easily diagnoseable, and even better easily fixable. While the abnormalities seemed a bit worrying, the prospect of the pain going away was enough to calm my concerns. There was a part of me that was even looking forward to getting it all over with.  

But when has anything to do with my health ever been simple?

I saw the surgeon today, and when he and the nurse saw the indentation on my skin, they both said variations of "Oh... that's not right," and very quickly came to the conclusion that this is not a lipoma. If it is a tumor, it would have to be a more nefarious form, but the more likely diagnosis is that some of my tissue has died (fat necrosis.)

There are a few possible causes for this, all of which are somewhat worrying.

Fat necrosis is sometimes caused by injuries. I do injure myself a lot - clumsy + issues caused by my illnesses - but I don't remember anything significant enough to have caused this. Given my sleep disorder, there is a possibility that I hurt myself in my sleep. I think this is unlikely, as I'm sure I would have remember something or at least found some evidence of an accident in the morning. If it was a sleep accident, then it's concerning for several reasons. 

I remembered today that I did have a really nasty black mystery bruise in that area a while back. It's possible that was from an injury I don't remember getting, or it could perhaps have been the early stages of the tissue dying, and I didn't recognise it for what it was at the time.

Another possibility the surgeon suggested is that it could be from having steroid injections. It's been a year since I had one, and I'm not sure if it was on the same side, so I'm dubious about this being the cause. If it is, then I'm guessing that may mean I'll have to drop steroids as a treatment option (I can't take them orally) and it does make me a bit worried about all the other injections I take on a regular basis. 

The final option the surgeon suggested was that it could be down to some autoimmune/lupus activity... not exactly ideal as this would raise the question of whether it's going to happen again.

For now, I don't know. Like everything, I may not get a clear answer as to what caused this. I've been referred for an MRI, and possibly a biopsy after that, to firmly rule out the possibility of a tumor. If it is necrosis, the surgeon has advised not removing the dead tissue as this would be a bigger surgery, and would leave significant scarring. While I feel self-conscious about the way it looks at the moment, I agree that it's not worth risking it ending up looking worse. I'm not happy that this means the pain won't be going away, but I have lived with pain to greater or lesser degree for most of my life. I just hope that it eases up a bit, so that walking isn't so uncomfortable.

I don't really know how I feel about all of this. Many of the same feelings I had when I wrote that last post have resurfaced, but I feel like I'm processing them better than I did two weeks ago, though I have been dramatically yelling "A part of me has died!" then having bursts of laughing and crying at the same time. Like I said at the end of my last post, this will pass. It will pass, it will pass, it will pass, and at the meantime I'll let myself enjoy the humour of the melodrama.

Thanks for reading,
Little Miss Autoimmune.  

Sunday, February 12, 2017

I don't know how to explain


I don't know how to explain what I'm feeling right now.

I don't know how to explain how utterly panicked I feel that I'm heading into another round of doctors appointments and testing. If I try to explain this, I know that the assumption will be that I am afraid of the results, but I know the results already. This will be another non-specifically abnormal thing, attributed to one of the diseases I already probably (but never definitely) have. I am just tired. So tired of the whole process, and just thinking about it makes me want to cry.

I don't know how to explain that I can't face the idea of there being a treatment option. The idea of a "safe" treatment means nothing to me now, because I have seen how much harm harmless-treatments can cause, and how much they've cost me in the past. Just the thought of it makes me begin to hyperventilate. I also don't know how to explain that I've fought really hard with myself to get to a place where I am okay with being me. Not me except for the illnesses, or the me I think I could be if a few things were fixed. Just okay with being me exactly how I am right now. Attempting to change things, even if it's for the better, means starting a lot of that work all over again. I don't know how to explain how devastating hope can be, when things don't work out, and that letting myself feel it is not worth getting crushed for. A treatment option is hope, and that just feels to hard to do again. 

I don't know how to explain how panicked logical responses to my feelings make me feel, because they remind me that my anxiety is not logical. That there are parts of me that will run to their own rhythm, and will drag me along behind no matter how calmly I ask them not to.

I don't know how to explain how trapped I feel sometimes, by my allergies, by my body, by the delicate balancing act I have to work on everyday. A small thing has upset this balance recently, and I haven't figured out how to put everything back into place yet. The contradictions of things that help one disease but harm another can be exhausting, as every action holds an element of risk. I don't know how to explain how I am constantly both proud of myself for continuing to function and terrified by every choice that allows me to continue doing that.

I don't know how to explain how little patience I have for people who mock or criticise the ways I choose to manage diseases they don't have and don't comprehend. I don't know how to explain how sick I am of justifying my diet, sick of trying to elicit some form of understanding and knowing that I'm not going to get anywhere because it's just more fun to mock paleo/gluten-free/anything-that-differs-from-the-norm than it is to take a moment to show some compassion. You don't need to believe it works to show some empathy for the desperation that is making people want to try it, you just need to let go of your need to be right.

I don't know how to explain that no one can help me with any of this, and that makes me afraid to talk about it, because all that does is make other people feel bad. And I don't know how to explain how that sometimes I just need to say it all anyway, and that's why I'm writing this down.

I don't know how to explain that I will be fine tomorrow. All of this will be easier, and I will feel okay again, but tonight it feels hard. Tonight I will be melodramatic, and write every feeling that comes into my head with the hopes of releasing them from me and letting them go.

There is nothing that I need, except to wait, and accept all of these feelings good and bad. As awful and desperate as I feel right now, there is also a calm part of me that knows it's all okay and that these feelings are temporary.

Tonight is hard, but tomorrow will be better.

Thanks for reading
Little Miss Autoimmune

Thursday, February 2, 2017

The Tortoise is Graduating!

I got an envelope with this sticker on it in the mail the other day, and I stood in my mail room and grinned. My smile wasn’t for the actual graduation. I won’t be attending the ceremony – I’m teaching that day, plus it will be a lot of standing outside in the sun and then hours of sitting, which is not terribly me-friendly. And it wasn’t for the qualification itself either – this is a piece of paper that qualifies me to do… well, not much really, other than the job I’ve already been doing for several years.

My grin was because I did it. I finished. It took me seven times longer than it would have taken a full-time, healthy student to complete, but I still did it.

I started this qualification – a diploma in creative writing – back in 2009. I completed one paper, before I had to drop out, because my health wasn’t good, and my mum was very ill at the time as well. It just seemed too stressful.

Dropping out wasn’t an unusual thing for me at that point in my life. My physical health and anxiety had caused me to drop out of pretty much every course – formal and informal – that I’d ever tried to take, and it was only due to incredibly supportive bosses (who suggested I take leave instead every time I tried to quit) that I had managed to hold down part time employment.

This time was slightly different though. I’d managed to complete the paper before dropping out. Even though I hadn’t finished the qualification all in one go, I had at least done enough to get that first lot of credits. In some ways, I think completing that first paper was a turning point for me.

Initially, this whole exercise was mostly just for my own interest, but over the last couple of years it became more important to me to finish. I work teaching creative writing, and having subject matter and adult education qualifications (will finish the adult ed. one this year!) will likely become important to continuing to do this in the future.

Over the next seven years, I completed the rest of the papers – one at a time, and sometimes with yearlong gaps in between. I had plenty of free time, but not always enough spoons to stretch to cover study, and trying to do assignments while flaring badly was painful and exhausting. There were many times where this all felt hopeless, and I wanted to give up. I felt like I would be studying for the rest of my life, and it was all beginning to feel a bit pointless. But then, I started to embrace life as a tortoise. It wasn’t going to happen quickly, but as long as I didn’t give up, I would eventually get there. One by one, I completed the papers, and now here I am, grinning at an envelope like an idiot.

Doing anything with chronic illness is often harder and slower, but sometimes that makes it just that much sweeter when you finally get there. I think graduating means more to me now, than it would have if I had completed the course that first year. It tells me not only that I can do the work, but that I can work through the hard stuff, even when it seems like I can’t at first.

If you’re in the middle of battling managing chronic illness and study and feel like giving up… it is okay if you do. It is a really hard thing, and sometimes saying enough is enough is the right choice. But you know what? You CAN do this. It will be hard and mostly likely slow, and there may be times where you have to pull out of one or more papers and come back to them later. But tortoises still make it to the end eventually, and man is it going to feel so good when you do.

Thanks for reading
Little Miss Autoimmune 


On a related, but slightly self-promotion-y note - some of the stories I wrote during my studies are now published in my first short story collection, Symbolic Death. You can get a free copy of it here.