Sometime it's okay to stop (Life is about snapshots not oil paintings)

When I stopped blogging last year, I'll admit that there was a part of me that thought it was somehow going to cure me, that I would wake up the next morning illness-free, full of energy and ready to take on the world.

Yeah... nah.

My health continued to be as bung as it always had been. I also still struggled with all the feelings about my illnesses that had led me to decide to stop blogging in the first place, but I did at least start to make some headway with understanding what those feelings were really about and identifying them, even if I couldn't always change them. One of the big things that did change for me was my willingness to try new things, and make plans for the future. Once I started taking more notice of my own thoughts, I realised how much I was stopping myself from doing because of the way I felt about my illnesses rather than because of the illnesses themselves.

When I went through the pain clinic programme a few years back, one of my exit goals was to go back to dance classes. Now admittedly, my health has done all sorts of strange things in the time since pain clinic that would have made dancing difficult, but I was also hampered by the idea that I would cause disruption or embarrass myself in classes by being being sick/fainting/my legs stopping working suddenly (or any of the other things that can happen on a daily basis) or just generally not being able to keep up in the same way I could in dance classes I attended pre-illness.

Realistically, if my body did decide to have a tantrum and stop working properly, yes, it would cause some disruption to the class, but the impact of that on other people was probably not going to be as bad as I imagined. Even if it went utterly and completely wrong, it would still only be one hour of my, the other students', and the dance teacher's lives, so in the end, I decided to just get over myself and try a class. I gave the teacher a heads up in an email and at the start of the class that there was the possibility of me falling/fainting/other bung things, and she was fine with me taking it at my own pace or sitting out if I needed to.

It turned out the biggest issue for me was that after ten years without attending classes, I was completely out of practise at learning choreography and spent most of the first class facing the wrong direction. That came back pretty quickly though, and I began to really enjoy going to classes. It became a fun, and stress-relieving part of my week.

However, it hasn't been completely without problems. Fatigue, muscle spasms and pain are not exactly the most compatible things with dance, and some weeks I've been completely wiped out by classes. At the end of last term, I was really struggling to keep going. Work and other commitments were using up most of my spoons, and finding enough to dance on top of that was hard. This term my work schedule is even more demanding, and I've known the sensible thing to do would be to take a break. But the thought of stopping classes really pained me.

This was something I fought for - emotionally and physically - and something I had won back against illness. I wanted to cling to that, and not let go. I felt I had to keep going - not just at dance classes, but with everything - because if I gave in, it might mean losing those things again forever. So I pushed myself to keep up with everything... and of course my health started to bear the effects of that. Continuing to do something because I am afraid of losing it is probably not all that much better than me being afraid to even try it in the first place.

A friend sent me this song the other day:

This situation wasn't the reason she sent me it to me (we'd been talking about taking photos) but it felt like it fit pretty well anyway. I went back to classes. I danced my ass off. I fricken loved it. Here is the polaroid picture to prove it...

(I'm on the far right in the pink singlet.)

...and right now, it's okay for me to stop. I may go back to classes again - I stopped for ten years and went back - or I might not. But either way, it's still fricken awesome that I got to do this again after so many years. Letting go of this does not make it any less cool that it happened, and letting go right now does not mean "never again." Sometimes, it's okay to just say "I'm pressing pause."

Thanks for reading,
Little Miss Autoimmune

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  

Last Post For A While

This is going to be my last blog post for a while. I have to admit, when I’ve seen other people write posts explaining why they’re taking a break from blogging (or rather not explaining, as these posts are often quite cryptic) I’ve always thought it was a bit strange. I don’t imagine that if I stopped blogging, without a post saying why, that many people would actually notice, but as I’m sitting down to write my own version of this type of post I now understand why people write them. I’ve been contemplating the reasons behind this for a while now, so apologies if this gets a bit long and rambley.

The last time I stopped blogging for a significant period of time, I didn’t write any kind of explanation. I just stopped, because things were so bad with my health that I was struggling to convince myself I even wanted to be alive anymore, and writing about how awful things were didn’t seem like it would be of use to me or anyone else. Then, amazingly, I went into remission and I was too busy enjoying my life to think of writing about it. This time, my break from blogging has less to do with my health itself and more to do with my attitude towards it.

Recently I’ve caught myself in several unhealthy thought patterns about my illnesses, some of which have also been noticed and pointed out to me by people around me. After posting this piece, a friend sent me this message: 

“I hope this is OK to say, but have been thinking about it since I read your latest blog post. You mentioned a few times about 'being a sick person.' I just hope you know that this is not how I (and I imagine any of your other friends) view you. You're my friend Helen who happens to have health problems and we love you!”
 

I hadn’t registered that I had referred to myself as “a sick person” until my friend pointed it out. A couple of times recently, people have told me I need to be careful about letting illness become my identity. Both times, I felt myself bristle, and thought “what the hell are you talking about? There is so much more to me than my illnesses!” But once I managed to put aside my defensiveness I realised there was some truth to what they were saying. They probably weren’t trying to say that there was nothing to me apart from my illnesses, or that my illnesses were the most interesting thing about me. Instead I think maybe they were trying to caution me against overestimating the significance of this part of my life. When I refer to myself as a sick person, it does give “sickness” more importance than is warranted. As my friend said in her email, I am Helen, who happens to have health problems. Illness is a part of my life, and there’s no use denying that. But it’s not me. 
 

When I let illness become this significant, it can be easy for me to start discounting the other (good) things in my life because the illness feels all consuming. I realised I have been feeling some shame towards my illnesses, as if they somehow make me “less,” “broken,” or even “worthless.” At times, I’ve been feeling the need to downplay and hide them. For example, I find myself really reluctant to meet people in person if my first interactions with them have been by phone or email, as I feel as soon as they see me in person they will see I walk with a stick and it will change their view of me. At the same time, anytime I do downplay my illnesses I feel as if I am deceiving people, like they wouldn’t want to be around me if they knew what things were really like.

A couple of weeks ago, I fainted when I was out for the evening. And, because I had pretty much no warning that it was going to happen, and fainting usually makes me a bit disorientated anyway, I then had a panic attack soon after coming around. Everyone around me was very nice about it, but I found myself thinking: “Well, that’s that. They know what I’m really like now.” I felt that in their eyes, I would be reduced to someone who is frail and ill and nothing more. But then a couple of days later, one of the people who’d been there that night got in contact with me, not because I had been unwell, but simply because they had liked a poem I had written and read that night. It made me realise that just because I was busy discounting all the good things because of my health, it didn’t actually mean everyone else was. 

The other day, someone came up to me and asked if I was walking with a stick because I got into a skateboarding accident. I was about to explain, that no, I walk with a stick fairly permanently because I have lupus, and I felt the familiar sinking feeling in my stomach that comes with that conversation and the questions it usually raises. But then I stopped myself, laughed, and instead said: “Yes, that’s exactly what happened.” Now, I’m not exactly advocating lying, but it was really freeing to realise that I don’t actually have to explain, or apologise for, my existence.

I have fallen into the trap of letting my illness become my identity and I need to step away, and figure out who I am separate from that. This blog isn't the thing causing me to create this identity, but taking a break from blogging is a way to mentally separate from it.  

I want to say a big thank you to everyone who has read my posts over the last five years. It’s been a long journey, and it’s helped having people along for the ride with me. I’m pretty sure I’ll be back here again at some point in the future, but until then I wish you all health, happiness, and a whole cutlery store full of spoons!

Thanks for reading,

Little Miss Autoimmune