Showing posts with label fear. Show all posts
Showing posts with label fear. Show all posts

Wednesday, April 8, 2015

The Last Year (a blog on love and stuff and things)

Written 2nd April 2015


2nd April 2014
Today facebook added a photo I posted exactly one year ago to my timeline. Normally I find these kind of posts mildly irritating. Only mildly though, because they are not in and of themselves offensive; they just serve as a reminder than facebook is probably not the best use of my time, and that I should really stop reading the newsfeed.

This photo caught me off guard though. I remember when I took it. I had been incredibly sick, just a few days before, and basically hadn’t gotten out of bed since. I had cried a lot in the days leading up to this, and so my eyes were very puffy and I still looked sick, but then a package had arrived in the mail, with this hoodie in it, and so I had put it on and taken a photo to try and cheer myself up.

Not long before this illness/new-hoodie-photo-taking, I had met a boy. In my head, this all happened the same week, but when I think about it properly I don’t think that can be accurate. It didn’t happen too far apart at least. I had talked to this boy, in part, because this wasn’t the first bout of bad sickness I had had that year. The first had been really terrifying and confronting, and had forced me into a sort of “bucket list mode.” I felt like my time was running out, and so I’d stopped caring if I made a fool of myself, got over my natural shyness, and just started doing things to make the most of my life. Talking to him was one of those things. When we met, this boy had told me about an event coming up, and I had decided to go, mainly because the event sounded cool but also because I wanted to see him again.

And then the second sick episode happened.

I was too unwell to go, but more than that, I also thought I shouldn’t. It reminded me that I was a sick person, and that I shouldn’t inflict that on anyone else. And so I forgot about the boy.

A few months later, I was looking at a facebook event I’d been invited to, and I realised he was invited as well. On impulse I sent him a friend request. Then panicked and messaged a friend to ask if she thought that was a weird thing for me to have done, given that I’d met him only once and that was several months ago (she said yes, it was a little bit weird, but given that facebook is weird, it was probably okay.) Then while I was talking to her, he accepted my friend request, and we started talking.

We hung out a few times. I was never quite sure if that was just as friends, or if there was the potential for something more. Honestly, that freaked me out. I liked him, but I also really like clarity. The in-between feeling was hard to deal with. And still, in the back of my mind was the idea that I was a sick person and shouldn’t be inflicting myself on anyone else. Me dating someone would mean they just ended up looking after me, wouldn’t it? That wasn’t fair. That feeling grew inside me, until I told him as much. I still wasn’t sure whether he saw me as anything more than a friend, and saying anything felt horribly presumptuous, but I basically told him I was too sick to be in a relationship, and that we should just stay friends. So that’s what we did for the next few months.

Right now I am sitting in my living room, with incredibly puffy eyes from spending the last few days crying, and wearing a T-shirt that the boy left behind (oh my God, I am such a cliché right now!) Despite everything I thought about myself, and what it meant to have an illness, the boy and I ended up falling in love. Unfortunately, we fell in love right after he had made the decision to leave the country in a few months’ time.

It was a case of bad timing, but we decided to spend the time left together. Much of that was spent avoiding the subject of him leaving, though he did ask me at one point if the fact that he was leaving made it easier for me. The answer, I guess, was yes and no. It made it easier at the start, because I felt like I was talking a risk by allowing myself to be with someone and so I thought that if it went horribly wrong, it would be easier for both of us to be able to make a clean break. It also made it so so much harder, because I was letting myself fall in love with him, knowing he would soon be gone.

It was scary for me to be in a relationship with someone. Every time I had a bad day with my illness, it was really hard to let go of the part of me that wants to hide all that and protect the people I care about from it. Every time he helped me when I was sick, I felt guilty and like it was unfair to him. But then after a while, I started to see that I was caring for and helping him as well, just in different ways. I also realised that a lot of what I was feeling was not just about having an illness, but about many different fears I carry inside me, and blaming it on being sick was perhaps just a convenient excuse I had given myself. Being vulnerable is hard, and sometimes it feels easier to be alone with it. But something being easy, doesn’t always make it best. Being vulnerable with another person IS hard, but it can also feel amazing when it’s the right person, and they care enough about you to want to see the not-so-pretty parts of your life as well as the best bits.

The boy left a few days ago.

I’ve spent the last few weeks answering questions about whether I am going with him, whether he’s coming back, or whether we’re going to do the long distance thing. The reality is, none of those options were really going to work for us at this point in time. Of course there was a big part of me that wanted to cling to him, and tell him to stay, but as hard as it was for me, I told him to go. He has things to see and do in this world, and I want him to do that, even if that’s not easy.

Right now, I am incredibly sad. I miss him more than I thought was possible (hence wearing his T-shirt) but I don’t regret falling in love with him. The last few days, I have felt like I will never get past this heartbreak, but I keep remembering the fact that I only feel this sad because I have had something wonderful in my life, and that really does make this sadness worth it. My feelings about my illness nearly stopped me from having that, and I’m going to try to remember that particular fact in future. My illness is a part of me, but it’s not me, and I need to remember that when I feel like holding myself back from things because of it.

Thanks for Reading
Little Miss Autoimmune  

Monday, October 15, 2012

Better the Monster you know...



On Thursday, I had an appointment with my new Rheumatologist. The result? Apparently I now don’t have a diagnosis of lupus.

This was a bit of a surprise for me. It was quite confusing, as it almost seemed the doctor was implying that I’d diagnosed myself with it. I knew very well that I hadn’t, but I did start to doubt myself. Had I totally misunderstood what my previous doctor and nurse had been saying? Eventually she explained that yes, I had been told I had lupus, but that was based on some of my blood tests being positive, but others done later (which are more specific to SLE) came back negative. 

We went round in circles for a while, as I tried to understand what was going on. Basically, though I don’t have drug-induced lupus, which is curable, there is still a possiblity that one of my medications could be causing an ANA-type reaction, which would explain my symptoms and blood results without the lupus diagnosis. Well, it would explain them, if most of the symptoms hadn’t started years before first taking this (or in some cases any) medication. So after discussing this for a while, the doctor decided that actually I do meet quite a number of criteria for lupus, though still not enough for it to make a clear-cut diagnosis. She said they haven’t ruled out lupus, so essentially I don’t NOT have lupus, but we can’t call it lupus yet either.

I was quite upset when I left the office, but I wasn’t entirely sure why. Shouldn’t I be happy that I potentially don’t have a rather horrible disease? Well, happy might be pushing it. The name lupus doesn’t actually change anything. I have the same symptoms either way, and my treatment options (or lack of) are the same. So why was I so upset?

I kept going over one particular part of conversation in my head. For several years, I’ve had reoccurring symptoms where it seems like I have a urinary tract infection. Every time this happens, my lab tests come back abnormal but showing no infection. A couple of weeks ago this happened again, and the GP I saw said it was most likely down to the lupus. This didn’t really change anything, as it didn’t provide a solution, but it at least provided an explanation for symptoms that had been a mystery for years. I asked the rheumatologist about this, and she said “well, inflammation in the urinary tract could cause those symptoms and produce those lab results, and that is something you might expect to see in lupus, but we don’t want to call it lupus because then we might not investigate and miss something else.”

Something else.

For years, being sick with symptoms that didn’t have an explanation was kind of like having a dark shape in my room at night. Maybe, when the light was turned on, it would be nothing. Or maybe it would be a monster. At the end of last year, when I was told I had lupus it was like the light had been turned on, and there was indeed a monster in the room. But at least now I could see it, and if I could see it then I could control it and maybe it wasn’t such a big monster as I’d originally thought.

I realised the reason I was so upset after this appointment was I felt like the light had been turned out again. It was back to being just a shape in the room, which was maybe a monster I knew, or maybe “something else.” “Something else” really is quite frightening. “Something else” potentially puts more than one monster in my room. “Something else” makes me feel powerless especially when it doesn’t really feel like anyone is investigating to see what it might be.

Despite the anxiety that this produces in me, I don’t really think there is something else. I’m fairly certain that what I have is lupus, even if a clear-cut diagnosis can’t be made. So for the moment, the other monster in my room probably is just made up of fear, and anxiety monsters can be pretty damned scary if you let them.

I’m going to do my best not to let this one be.

Thanks for reading
Little Miss Autoimmune.