Sunday, October 12, 2014

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

Monday, September 22, 2014

A (love?) letter to my own body

Dear Body,

I want you to know I hear you.

I was pretty unimpressed when you wouldn't let us get out of the bath last night. This is something I've always worried about, but somehow I still managed to be surprised when it finally happened. I guess because you'd been behaving so well lately, you'd lulled me into a false sense of security.

I was pretty angry with you, Body. As much as I try to be Zen about the all odd things you insist on doing, this time you really pissed me off. And truth be told I was a bit scared. Yes, we have things in place to make situations like this okay... but all of the possible solutions still required either pain or embarrassment, and I just didn't want to deal with that. 
The thing is though, once it became clear we weren't going anywhere, and I made the plan to just top up the hot water and wait it out until you agreed to start working again, I realised this was your way of trying to make me listen. You don't have that many ways of communicating with me, do you Body? And so you tend to pick the ones that you know I'll take the most notice of - dropping my blood pressure so I have unplanned lie downs, making my limbs stop working properly so I have to stop moving, and of course our old friend Pain.

I know you think I don't listen, and sometimes you're right. I keep pushing you when you're telling me that you need to stop; that you need to rest. I haven't been doing that good a job of taking care of you lately, have I? I haven't been sleeping enough, or eating enough (though if you could ease up on the nausea a bit, that would help!) I've been making you do too many things, using up more spoons than we have, and I've been worrying and stressing out too much.

But I want you to know, I hear you.

We've been here before. At the start of the year, I didn't listen to you, and we ended up in a pretty bad state. I promise you, I've learned from that. You need to trust me, Body. Sometimes I am going to push you more than feels comfortable, but you need to trust that when I do I will have rest planned for you afterwards. Guess what, Body? We have the whole week off next week! And I'm going to do better on feeding you nourishing food, getting you to bed early, drinking enough water, remembering to take meds on time, and getting gentle exercise. I'll even give the relaxation stuff another crack too. In return, can you please just hang in there and not freak out? 

Ultimately, I know that you are just trying to protect us with all your over-zealous immune-system activity. Your methods are pretty are pretty flawed, but I know that somewhere deep down it comes from a good place. So really, Body, we both want the same things. We just need to trust each other, and give each other a break sometimes.

Lots of love,

P.S. Thanks for finally letting us get out of the bath without help. I really appreciate it xoxo

Little Miss Autoimmune

Thursday, September 11, 2014

Acceptance Goes Both Ways

Molly Stick and Tilly hanging out
Learning to accept things is a big part of living with chronic illness. For a long time I resisted that idea, as acceptance seemed like giving up. I wanted to keep fighting for something better, rather than “give in” to being a sick person. But after going through the pain clinic programme (and a bit of mental adjustment) I learned that acceptance is not about giving up. Instead, it’s about continuing on with your life, still working towards goals or carrying on with with things you love, but just realising that now illness is going to be a part of that. Rather than trying to fight against it to get what you want, you give it a hug and convince it to come along for the ride with you.

I think these days I find it easier to accept the bad parts of my health than I do the good moments. I’ve never thought of myself as a particularly pessimistic person, but when things are good, I tend to assume it’s only temporary. I guess a lot of this is down to experience. For the last two years I’ve gotten really excited over the fact that my symptoms got so much better over winter, thinking that I was heading into remission, only to be disappointed when they worsened again in summer. This winter I’ve been the healthiest I’ve been in about 15 years, which has been fantastic, but there’s also been the nagging thought in the back of my mind that it’s all going to come crashing down as soon as the weather starts to get warmer. Perhaps it’s just the fact that I grew up with a very superstitious mother, but I always feel like if I start making plans, allowing myself to do more or changing things in my life to suit my good health, I’ll be tempting fate and the universe to go: “haha, just kidding, here’s a MASSIVE flare!”

But acceptance should go both ways. I should be able to accept things being good in this moment, without mitigating that with what I think they’re going to be like in the future. I should be able to do more, and enjoy life the way it is right now, without worrying that doing so is going to come at a cost.  

Last week I was thinking about the problem of poor MollyStick falling apart. In the week after I hurt my arm, when I was walking without her, I realised that a lot of my reliance on her is psychological rather than physical. No, I can’t get up and down stairs or steep slopes without her, and I definitely can’t get on and off buses unaided, but when it comes to just generally walking around I’m usually fine. My lack of confidence with walking was more about the possibility of my legs becoming unsteady, than it was about them actually being unsteady (though there was a bit of that too!)

Ideally I would like to be able to go out without a mobility aid on the days I’m feeling well. Before I started walking with Molly Stick, I could keep my health problems private if I wanted to, because there weren’t visible signs for people to ask about. There are times I really miss that, as it can get exhausting having that conversation over and over, and sometimes it would be nice not to feel like a sick-person all the time. However, going out without a stick would mean I couldn’t go anywhere involving stairs, buses, or steep slopes which rules out a lot of Wellington! And if I did start to get tremors or bad pain, it would be a lot harder to deal with unaided. So I started thinking about what options might suit that, and I realised a folding-up stick that I could put in my handbag when I don’t need it would be perfect. It would be there when I needed it, but I wouldn’t be stuck with the all-or-nothing element that comes with a more cumbersome crutch. Folding up sticks are slightly less secure than crutches, as you don’t have the bit that goes around your arm, but since things have been better lately, I might be okay without that extra security all the time anyway.

Now, there’s a part of me that thought even considering this was bound to make things worse again. And truth be told, I did have kind of a bad fall the next day, and had to press my medical alarm as I'd landed with my arm pinned awkwardly (and painfully) underneath me, making it impossible for me to get myself up. For a couple of hours, the superstitious part of my brain went into overdrive, not helped by the ambulance officer telling me I seemed far too unsteady to be walking with anything less than a walking frame, and the fact that I had a second, smaller, fall in the morning which split my toe open. But the reality is, I have falls sometimes. And I have tremors sometimes. I’m especially likely to have falls and tremors when I’m really over-tired, which I was that day, and I was probably in a bit of a flare anyway. None of that means that all the good days I’ve been having lately are all going to be replaced with ones like that. It just means that I had a bad day.

Today, my doctor and physio both signed off on new (as yet to be named) folding stick. I walked up and down some stairs with her, and I’m feeling really happy about the freedom this will allow me. This might sound superficial, but new stick is also very pretty with a silver and purple design, which makes me happy as well. Things may get worse again. I may find that new stick isn’t secure enough for me, and I may need to go back to using a crutch. But for now, I’m going to take a deep breath, accept that at the moment things are going well, and enjoy this. One of my friends suggested a little while back that when it came time for Molly to retire, and a new stick to take her place, I should throw a party to celebrate and for Molly to pass on her wisdom to new stick. This seems like the perfect way to tell the nagging superstitious part of my brain to take a hike, because right now things are good. 

Thanks for reading,
Little Miss Autoimmune.

Update 13/10/14 New stick's name turned out to be Tilly. It didn't all go smoothly at first - I kept forgetting that there wasn't a bit around my arm, like with a crutch, and so therefore kept letting go and dropping her. I also found my hand was getting really sore, as I felt the need to grip much tighter than I had with Molly. Both of these problem improved after getting a lanyard (I'd highly recommend one of these if you walk with a stick.) I have been trying to fold Tilly up when I'm out, to see if I can walk without an aid, but it turns out my right hip and knee start to really hurt when I do this. I'm going to keep trying short distances, but won't be walking completely without a stick anytime soon.

Saturday, August 23, 2014

To chemo or not to chemo

Yesterday I read this piece written by a fellow autoimmuner, Ashley, about her reluctance to call her rheumatoid arthritis drugs "chemotherapy." It was interesting timing for me, as I'd recently had a conversation where I'd referred to my meds as chemo and then immediately regretted using the term. Once it was out of my mouth, I realised it sounded far more melodramatic than I'd meant it too.

Ashley's article gave me some things to think about. Firstly, I'm truly sorry if I have offended anyone by using the term. I was in no way intending to "compete" or compare myself to cancer patients. My mother died from cancer a few years ago, and during her journey went through chemotherapy. I do understand that cancer and chemotherapy chemotherapy are horrible experiences, and I mean no disrespect to anyone who's gone through that by using the same name for my medications. 

I don't always refer to my injection as chemo. In the conversation I mentioned above, I'd been about to say I was going home to "shoot up," then realised that might be a bit inappropriate, so changed tack at the last minute and said I was going home to "do my chemo" instead. I usually just call my medications pills and injections, unless someone specifically asks what my drugs are in which case I explain that the injection is a low-dose form of chemotherapy, one lot of the pills are an anti-malarial drug (I actually took this same medication as a malaria-preventative at times as a child) and that I'm not quite sure what the third lupus med I take is. I also explain that the point of all of them is to squash down my immune system, so it won't be able to attack my own cells anymore.

So why do I use the term "chemo" at all?

Ashley suggests that for some people this might be a way to draw pity, or to misrepresent the situation to make things seem worse than they actually are. I don't think this is the case for me. I don't like having people pity me, and to avoid it I usually make jokes about my situation. This works pretty well, except for the fact that it does then make it harder to communicate the more serious aspects of these diseases when necessary. I find I can't tell someone something serious without wanting to follow it up with something funny or to cut the conversation off completely. As soon as I see people making what I call Pity Faces, I want to make the conversation lighter because it's hard enough to deal with my own feelings about this stuff without making other people feel upset as well.

In a way, using the word "chemo" makes it easier for me to communicate these serious aspects and answer people's questions without having to actually have the conversation properly. Some examples of this are:

Question: Why are you vomiting? Why would you take a medication that makes you so sick? Isn't this supposed to be making you better?
Answer: Well... it's chemo. (Also, stop asking me asking me complicated questions while I'm vomiting!)

Most people think of medication as something that makes you feel better, so it's hard for them to understand taking something that at times makes you feel worse. Explaining that it's a low-dose chemotherapy helps people understand that while this might make me very sick for a few hours, it is ultimately still the thing keeping me healthy. No it doesn't make me as sick as someone receiving chemotherapy for cancer - it is only a fraction of dose - and no I'm not the same type of sick as a someone with cancer. But it is the same concept.

Question: Why did you just back away when I tried to hug you? I've only got a cold. Are you germ-phobic or something? (coupled with sad/offended look)
Answer: Sorry, it's just that I'm on chemo, so if I get a cold... I can get really sick.

I hate offending people, and, depending on who you are to me, I probably would hug you back if you weren't sick. But when you're on any kind of immunosuppressant medication, getting sick - even just with a cold - does actually become a big deal. Something I've learnt the hard way after many respiratory infections! I used to try and explain to people that my immune system was squashed down by the medications I'm taking and therefore I can't fight off bugs. So, if they have a cold or the flu, I'd prefer to keep a little more distance than usual just for now. But by the time I'd got through that they'd either already hugged me before I could stop them or taken umbrage at my refusal. I also found the explanation didn't seem to stick. The next time someone was sick, we'd have to have the whole conversation again. Using the term chemo seemed to clarify this with people. Now, after I've explained once, people usually remember and automatically give me a bit more space if they're not well.

Question: Why aren't you coming out tonight? You seem fine.
Answer: Yes, I'm fine right now, but I'm doing my chemo tonight.

Not everyone gets side effects from autoimmune arthritis meds, but unfortunately I am one of the ones that do. I got very bad side effects on the tablet form because of the inflammation in my stomach, which is why I'm on injections instead. At lower doses, I didn't have too many problems, but now I'm on a higher dose I do get sometimes get nausea/vomiting, the shakes, bad headaches, or pass out, on injection night. It can mean that in a short space of time, I go from being fine to really not. So I don't go out and don't let people come over on the night I do it. I'm also a bit careful about what I plan for the next morning as if I do it too late in the evening I'm still sick the next day. I don't want people to feel sorry for me about this, but I do want them to understand that I'm not just ditching them - I would like to be there for whatever it is they're wanting me to do, I'd just also like to save our friendship from ending with me spewing on them! 

Question: Why aren't you drinking? One drink won't hurt. Oh, go on...
Answer: I can't, I'm on chemo.

To be clear, I only end up saying this if people won't accept "No, I really don't want a drink" and continue to press the issue. This one is complicated, because there are a lot of reasons I don't drink and blaming it all on my meds a little misleading, unlike the other examples I've used here which are honest answers. I have had problems with both my liver and kidney function in the past, because of my medications. These are both okay at the moment, but the tests do still fluctuate a little. When I was still drinking alcohol occasionally, I did notice a correlation between when I had a drink and when my tests results went out. The other major reason I don't drink is that I get uncontrollable muscle spasms and tremors when I do, which are inconvenient and distressing for everyone involved. This isn't something that people can be expected to comprehend, unless they've seen it, so putting it all down to "being on chemo" is the easiest way to get the message that I can't drink, and won't change my mind, across succinctly.    

 As I said, Ashley's article has given me a lot to think about. Again, I am very sorry if my using the term in this way has upset anyone. This wasn't my intention, I just hadn't thought through how it might feel for some people hearing a word like "chemo," when it's not fully explained. I'm going to give some consideration to whether I continue to use it, or whether it's time to find a new way to communicating this stuff to people when necessary.

Thanks for reading.
Little Miss Autoimmune

Saturday, August 9, 2014

Why My Crutch Has a Name

My crutch’s name is Molly Stick. First name Molly, last name Stick. I’ve found this to be quite a good personality test. People tend to react in three distinct ways.

1)      They totally get it. Their own car or phone probably has a name, and there is absolutely no question in their mind as to why Molly has a name. I like these people a lot.

2)      The idea of naming inanimate objects is foreign, but they’re willing to go along with it, much like they would when indulging a small child's imaginary friends. They’re easy to recognise by the slight hesitation every time they use the name ie. Do you need… “Molly”… Stick? They do tend to write “Molly Stick” in quotation marks as well. These people are really sweet for trying, though I do always wonder if they secretly think I'm an idiot.

3)      They find concept of naming inanimate objects very weird and it makes them uncomfortable. They generally refer to Molly as “your stick thingie” or some variation of such. It’s very tempting to start naming other random objects around these people just to confuse them – “And this is my door handle, Susan… and my cushion, Barry…”

Last week wasn't the best week. It started out okay, but then there was an incident involving a trestle table, and my arm getting mangled when I tried to put it up by myself. I’m not entirely sure how I thought that was going to end – me getting mangled is kind of the only logical conclusion to that scenario – but these things happen, so I’m trying hard not to be too pissed off with myself. Unfortunately, to complicate things further, it was the side I use Molly Stick on, so she had the week off while the swelling in my arm went down.

I always thought it was stupid when people said things like: “I feel naked without my (insert object of importance to them)” but that's exactly how I felt about going out without Molly. I’m normally pretty good at faking confidence when talking to people, but I discovered feeling unsteady, and physically unsure of myself, brought my natural shyness out of hiding. It also didn't help that it was a particularly unsteady week as, after several months of being fine, my legs lost the plot on Thursday and started spazzing out again. I'd been getting signs that this was heading my way for a while. I'd had some unusual muscle spasms in my arm the Friday before, and I'd been feeling generally unwell all week. But living in denial is way more fun than accepting you're heading towards a flare, especially as I knew it was going to be harder to deal with without Molly!

Five or so years ago, when I first started needing a crutch, I felt pretty resentful towards the whole thing. It was hard not to see it as losing independence, mobility, youth… all of that stuff. I was reading Diana Wynne Jones’ Howl’s Moving Castle at the time, and I really liked the relationship the main character, Sophie, has with her walking stick. She talks to it, treating it as not only a physical support, but also a companion/moral support, and, as the story progresses, as a magic wand – it is Diana Wynne Jones after all! I decided to try doing the same thing, treating my stick as a friend, that is. It worked. I felt better about it, and I've referred to her by name ever since.

A few months ago, Molly started falling apart. I’ve had to replace a couple of parts, and she’s now sporting some lovely blue electrical tape (Kiwi ingenuity at it’s best!) One of my friends suggested it's time to think about replacing her, and I surprised both of us by getting choked up at the idea. Molly really has become a friend, and the idea of losing her is as hard to accept as it once was to accept her place in my life at all. I've realised Molly isn’t the thing taking away my mobility or independence – she's the one giving it back to me. 

Thanks for reading,
Little Miss Autoimmune  

Saturday, August 2, 2014

Test Results

My theory that “no news means good news” when it comes to test results proved to be slightly flawed in that it doesn’t take into account when it’s actually “no news means your doctor just hasn’t had time to check the results yet.” At any rate, my GP rang me on Wednesday to tell the blood tests I had done a while ago had shown my B12 is quite low. I think you’re supposed to feel upset when you’re told there’s something new wrong with you, but honestly I just felt happy that it wasn’t anything more serious and that for once it's something easily solvable.

It always cracks me up that on the occasions I’ve gotten a phone call about tests results, I’ve always been doing something inappropriate considering what they’re telling me. When they rang to tell me I had coeliac disease, I was eating a box of whole-wheat crackers. When it was about my kidney function going south, my mum and I were making vodka cocktails (it was Christmas Eve, don’t judge!) And this time I’d just put some chicken back in the fridge in favour of making something vegan for dinner.

I know probably I don’t eat enough meat considering I already have iron-deficient anaemia, but the B12 is more likely low because of my stomach’s fun habit of deciding it doesn’t want to absorb food anymore. After a long time of my weight staying stable, some of the gut issues have reappeared and that has resulted in a couple of kilos disappearing again. I’ve been able to keep my iron levels normal with tablets, but given the weight loss at the moment, my GP decided to go straight to a B12 injection to give the best chance of it being absorbed.

I wrote this when I was five. I assume I’d just had my vaccinations (not entirely sure what the nutty friend part is about) but it did make me laugh how almost prophetic this statement is. As a five year old doing my best to avoid having any shots done, I don’t think I ever would have imagined someday I’d be injecting myself with medication every week, having regular blood tests, and occasional extra IM shots like this one, but there you go. I’m pretty blasé about needles these days, so agreed to let a student nurse do her first injection on me. She actually did an amazing job, and I barely even felt it. Fun times!  

A quick google search told me that a lot of issues I’ve been having lately, including the irregular heart rate, could be down to the B12, though there seem to be varying accounts of how long it takes for symptoms to appear. Most say there are various symptoms (the ones I’ve been experiencing) that can appear in the first few years, then a whole lot of much more serious ones that appear the longer you are deficient, so thankfully this should stop it progressing to that. I’ve also heard completely opposing stories from people as to whether they felt amazing straight away after the injection, whether it took them a couple of weeks to notice a difference, or whether they felt nothing at all.

So far I haven’t noticed any major change, but it’s only been a couple of days so I’m keeping my fingers crossed I’m in the better-after-a-little-while camp.

Thanks for reading,
Little Miss Autoimmune

Friday, July 25, 2014

Lupus: It's Not a Harry Potter Character.

The lovely Rachel from Fluted Cups & Ampersands wrote a post recently about how to talk to sick people. It's a pretty cool post, and really worth a read.

I've realised that I don't always know how to talk to "healthy people", and that is far more about me than it is about them. It's not because I think they're all that different from me, or that I think just because someone hasn't experienced chronic illness themselves they will automatically lack empathy. And it's not that I have nothing to talk about aside from health issues - there are a multitude of other things about me that are more interesting than my illnesses. It's just that all the things that happen to me are complicated in some way by my health. My anecdotes are often the type of stories that people don't know if they're allowed to laugh at, and sometimes a story I think is hilarious, will make people start pitying me, or worrying about my well-being. When people ask why I walk with a crutch, I just say I have lupus/autoimmune arthritis and leave the rest of it out to make it less complicated. But then sometimes that means I have to stop in the middle of saying something to explain about one of the million other illnesses, disorders and allergies I live with, because otherwise the story won't make sense. By the end of that, I've usually forgotten what I was trying to say in first place and the conversation has taken a bit of a depressing turn.

In a way it's really nice talking to people who don't know any of my medical history. Because then I can just be a person, and pretend the rest of it doesn't exist, at least for a little while anyway. But then when it gets to the point where I do need to start explaining, it just brings to my attention exactly how many things there are about me that are a bit left of centre. I was telling one of my friends that when I start thinking about all the things that aren't quite right with me, I realise I really should have been weeded out by evolution by now (again, the kind of comment that can make healthy people uncomfortable and chronically ill people crack up!)

So sometimes it's just easier to give up on trying to explain and start censoring my stories instead. For example, if I didn't know you that well, this is what I might tell you about my night last night:

I went to a play last night Second Afterlife. It's a clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot.

If I know you a little better, I might tell you this:

I went to a play last night Second Afterlife. It's a very clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot. On the bus home, a guy came and sat next to me and asked if he could pray for me to be healed. He was really nice, and while it didn't really influence me in any religious way, it did remind me of the kindness of strangers, which is always welcome. Then he asked me if lupus was a character from Harry Potter. That part made my day.

And, if I know you well enough to know you'll be okay with hearing it (or you read this blog) I'll tell you the whole story:

I went to a play last night Second Afterlife. It's a very clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot. On the bus home, a guy came and sat next to me and asked if he could pray for me to be healed. He was really nice, and while it didn't really influence me in any religious way, it did remind me of the kindness of strangers, which is always welcome. Then he asked me if lupus was a character from Harry Potter. That part made my day.

Then, while I was walking home from the bus, I started experiencing some really strong pain. I kept walking, because... well what else can you do? But walking got harder, I got dizzy and then I collapsed... about 100 meters from my front door. I lay there for a while, and it really sucked, but then I looked up, and I was lying under this beautiful tree and I could see the stars. Somehow that didn't feel so bad. Then it started to rain, and that made it suck again.

Obviously it all worked out okay in the end. I was still in one piece, and after a while I felt well enough to get up and walk the last 100m home. Therefore most people don't need to know about this, even if I think it's kind of funny. I can edit these parts of my life out if I don't feel like trying to explain them.  

I think the issue can be that sometimes when I do start telling people more, I worry that they will misinterpret why I'm telling them. I don't want them to end up feeling uncomfortable or think that I'm expecting them to help in some way. Generally when I do tell people about a fall, or something similar, what I want is for them to laugh with me about it (and maybe make a few sympathetic noises while I process what's happened.) 

Perhaps I need to stop thinking about it in terms of whether someone is a "healthy" person or not. After all, I'm not sure of the last time I met someone who didn't have at least one struggle they're dealing with. I just need to trust that if people know me well enough for me to be telling them the full story, they'll know me well enough to know they're allowed to laugh.  

Thanks for reading,
Little Miss Autoimmune