The pitfalls of hope

I wrote this in the middle of the night a few days ago. I wasn't going to post it, because usually things I write in the middle of the night are either incoherent or excessively maudlin, but I read over this tonight and it doesn't seem too bad! Feeling way more positive now either way. 

I am sad.

That seems like a stupid thing to start a post with. My goal has always been to make this a positive place. When I started this blog, I knew I was taking something that was my own personal journey and making it public. I don't think I could have put into words at the time why I wanted to do this. I think I had an idea that perhaps it would help other people, but also the idea that it would help me too. I've always been one of those people who narrates their own life inside their head - I say that like I know for sure that other people do this. I don't really. I guess I just assume that if shows like Scrubs and Grey's Anatomy are anything to go by, there are other people out there with a voice over inside their head trying to make poignant conclusions out of the random things that happen to them. Or at the very least conclusions, without the poignance.

Right now, it's the middle of the night. I got out my computer with the hope of putting my insomnia into productiveness by working on my latest novel project but instead I ended up writing this. Because I am sad and I am frustrated and in the middle of the night there aren't that many people you can say that to.

I read something on someone else's blog recently about how the author felt she may have exaggerated her illness, not to her doctors but to herself. I do this. I think we all do this. In the middle of the night, when the pain is bad, or if my body has become rebellious in some other way, I panic. I feel that this is the end. I have lost the use of that limb, and normal function will never return.

Tonight trying to open a jar of peanut butter, left me screaming in pain. I paced back and forth in the kitchen, clutching my hand and shaking, trying to fight back the nausea and tears the pain had induced. And then I cursed myself for being so melodramatic and laughed a little too, at how ridiculous it would all look if anyone were there to see it. Eventually I managed to open the jar with a pair of scissors, which made me feel a disproportionate amount pride at my own ingenuity.

This isn't why I'm sad. The pain in my wrist eventually eased, and I could laugh at my own panicked belief that it wouldn't. I thought of the icepacks in the freezer, the splint in my bedside drawer, and all the other back up plans that I have in place but that seem so far away in the moments I need them the most.

And I started to feel a little more positive. And I started to let my dark sense of humour construct the event into a funny story I could tell someone later if I chose.

Mostly I am fine with the way things are. I was going to say I hate the fact that I'm sick, but I don't know if that's accurate. Hating something takes energy and I'm not sure I even give it that. I manage being sick. Sometimes I panic. Sometimes I cry. Lots of times I laugh about it. And all in all it's okay.

And then something happens that give me hope, and that kind of messes things around for a while. Don't get me wrong, I have hope all the time. I have hope that I will achieve things despite my illness. I have hope that each day will be a happy one. I have hope that my life will be a good one, whatever it is that that means. But I don't have hope that my illnesses will get better.

To me, having hope that my illnesses will improve or go away means that I put my life on hold. Even if it's not what I intend to do, it's what happens. Why force myself to get out of bed and do something now, while I feel so ill, when I could wait until I am well and do it then? I have to have the belief that this won't get better, because I have to believe this is my life and live it like I'm not going to get another chance.

The reason that I am sad and frustrated is that recently I let the wrong kind of hope sneak in. Even though I tried not to, I let myself believe that in seeing the specialist and having some tests done, there might be an end to my stomach problems even if everything else stayed the same. This wasn't just a naive optimism on my part; at least I don't think it was. I knew very well the tests may not show anything - in fact, I had a strong suspicion they wouldn't. What gave me hope was the assurance from the specialist that even if the initial test showed nothing, there were steps we could take to improve things. Even if the end diagnosis was not one of "disease", but just of "dysfunction without known cause" there would still be a course of action to take.

It sounded so reassuring. I felt relief that I would have a direction at last. Even if it wasn't a cure, and the likelyhood was that it wouldn't be, I would at least know what I was supposed to be doing instead of just fumbling around hoping that I at least wasn't making things worse.

So the tests didn't show anything. I was prepared for that. But I wasn't prepared for the fact that I found this out in a letter, which I didn't totally understand, and did not include the promised plan of action. I wasn't prepared for the letter to talk about "part of the bigger picture" leaving me wondering if this was a reference to my medical issues which I didn't understand, or an pseudo-philosophical comment. I wasn't prepared for the fact that I actually don't know what happens now. And I wasn't prepared for the fact that all this not understanding makes me feel stupid and scared to ask.

This is where I'm at right now. Sad and frustrated. I should say, none of this is really a comment on the specialist in question. I do wish he had phoned me with the test results, as he said he would, rather than sending a letter. I don't think I would be this confused if I had had the opportunity to get clarification, but I would probably still be sad because I had let myself hope for that "better" and that was probably never going to happen.

I do know these feelings will get better. I know I will let go of that hope I was feeling, and I'll go back to feeling okay about how things are and not trying to force them into the picture of something I wish they were. I will laugh about this, and tell stories about this. I will go back to being okay about making my own decisions about how to try and treat my diseases, and stop hoping that someone else will tell me how to handle it.

Perhaps I will post this rant on my blog, or perhaps I won't because I will decide that it's all a bit overdramatic. Either way, writing it has helped me come to an internal-narrator conclusion worthy of Scrubs or Grey's. Maybe reading it would help someone else know that it's okay to not be positive 100% of the time. And that would be another conclusion in itself. For now I will sleep, and all going to plan I will wake tomorrow with the kind of hope that is good for me. The hope that tomorrow will be a happy day, and that I will have a good life. Illness or not.

Thanks for reading,

Little Miss Autoimmune.  

Arthritis New Zealand Christmas Appeal

A few months ago, I was interviewed by Arthritis New Zealand, as part of their Christmas appeal. Last week, they contacted me to say the appeal had raised nearly $40,000 in donations! They also included a copy of the story about me, that went out with the appeal. It's always a little weird to read about yourself, when it's been written by someone else, especially when it comes with photos, but I've posted a scan of the appeal letter below.  

 
Thank you to everyone who donated, and a big thank you as well to those of you who sent messages of support. Arthritis New Zealand sent me some of the ones addressed to me, which I've included below.

 

 


Thanks for reading

Little Miss Autoimmune

Choices (Part Two) - Life Isn't Fair

“Rather than embrace the immutable and humanizing fact that we are all dying at all times, we point the finger of scorn at those who die more quickly wondering how they have brought it upon themselves.” 

God is No Laughing Matter – Julia Cameron

I found this quote in the back of one of my notebooks the other day. I remember a few months ago reading it, and copying it down because it struck me as interesting, but even as I did I didn’t 100% agree with it. Yes, I have come across people who judge me for being ill. I have come across people who will make assumptions about why I am in the position I’m in now, or others who believe I could be fixed if I just... and the fact that I don’t want to, must mean I don’t want to be well.

For the majority of people, I don’t think the word “scorn” fits though. I think most comments of this nature come from a very genuine, if misguided, desire to help. Others, I think, come from the naïve human believe, which we all hold to some degree, that life should be “fair.” If someone gets sick because they smoke, do drugs, eat an unhealthy diet etc. then we can comment that it’s sad, but we can feel secure in the belief that it won’t happen to us because we take care of ourselves. We can feel confident that they did indeed bring it on themselves, and we aren’t going to make that same mistake.

One of the most common questions I get asked is whether I have tried a gluten-free diet. When I say I’ve been gluten-free because of coeliacs for over ten years, the response is often one of sadness. I think people sometimes hold on to the idea that you can cure everything with something like a gluten-free diet like a talisman, fighting off the illnesses they either have now or want to avoid in future. But unfortunately this isn’t always the case.

The reality is sometimes people who take the best care of themselves get very, very sick. Sometimes people who have terrible lifestyle habits enjoy a disgustingly unfair level of good health. Some people have immediate success with either conventional, or alternative treatments, and others of us have to struggle to find anything that will make even the slightest bit of difference. Because life isn’t fair, and that’s just the way it is.

I felt this tied into my first post about the choices people with chronic illness face, because as I wrote I was trying to pin down why it is that everyone seems to have an opinion on which options you should take when it comes to treatment. I was also trying to pin down why it is that I, and many others, get defensive when others make suggestions about what we “should” be doing.

In many cases, I think making suggestions probably comes down to wanting to share the happy. If something is working, won’t everyone want to try it? But the reality is whatever it is that’s working for you or someone you know; it may not work for everyone else. Other people may have already tried it, it may just not be right for them, or it just may not be a priority right now. When I dismiss something another patient suggests, it doesn’t mean I don’t believe it worked for them, just that it either hasn’t worked for me already, or there’s a very good reason I can’t or don’t want to try it.

So why is it that I get defensive?

I don’t mind people making suggestions, but I do mind if people push them or indicate that I’m being unreasonable not to try them. For example, I’m sure cider vinegar does have many healing properties but, given that I’m allergic to apples, I don’t have any interest whatsoever in trying it. I don’t expect people to know I’m allergic to apples, so I don’t object to the suggestion, but I do get irritated if people push it once I’ve told them it’s not an option for me. The allergy isn’t going to go away if you keep regaling me with the benefits of apples. Even if there isn’t a reason, and someone just doesn’t want to try whatever it is you’re pushing, I’m not convinced nagging is the best way to change that. If it’s something that you believe in, then by all means suggest it – but ONCE is enough.

It does also bother me when suggestions are given with an air of authority or with the implication that the suggester is an expert in the subject. Unless you really are an expert in both the thing you are suggesting AND the disease(s) you are proposing to treat you could be doing more harm than good. I can’t tell you how many times someone has suggested something that would actually do more harm than good for me. Not necessarily because the thing itself is harmful in general but because it is harmful for my particular illnesses. I can’t say this enough times: Just because something is natural does not automatically make it safe. I am old enough and wise enough to do my own research, and make informed choices, but I look back at teenage-recently-diagnosed-me, and realise that I wasn’t always. If you’ve heard about something you think could help, but you don’t know all the facts, just admit that. I’m far more likely to trust someone who says: “I don’t know much about it, but would this be helpful for you?” than to someone who insists they know exactly what I need, despite evidence to the contrary. 

The other thing I find hard to deal with is when suggests have an element of blame attached to them. A series of posts circulated on facebook recently depicting images of fruits and vegetables, against images of medications with captions like “when are we going to understand this is the cure (the produce) and this is just a band aid (the medication)?” or others suggesting that medications are the cause of all illness, and we’d all be cured if we just treated everything with honey.

I do strongly belief in the positive effect diet can have on illness, and I think alternative therapies can be very beneficial, but neither are a cure. I have always had a good diet, including my 5+ a day, but I still have health problems. I’m not sick because I didn’t eat enough fruit and vegetables as a child, nor can all my problems be blamed on medication. Suggesting anyone brought their illness on themselves by diet or any other means will most likely come across as condescending and, as the quote suggests, like scorn whether that is your intention or not. 

If you haven’t had first hand experience of chronic illness in your own family, it can be easy to believe that you go to the doctor or alternative medicine practitioner, they tell you what’s wrong, they treat you and you get better. It is hard to fathom that sometimes there isn’t a simple answer. It’s also hard to understand that just because something is natural, that doesn’t automatically mean it’s safe or beneficial.  

I think basically it comes down to, the suggestions aren’t the problem, but sometimes the way suggestions are made can be offensive. My advice to people would be to think about how you would feel when confronted by what someone else think you “should” be doing. Take a moment to listen and to ask some questions before jumping in with what you think the solution is. Posing your suggestion as a question can help too. Rather than “You should...” think about “Would _______ help?” or “Have you ever heard of _________?” 

And most of all, remember that it’s not always as simple as cause and effect with chronic illness. So leave the blame behind, at least until you have all the facts.

Thanks for reading, 

Little Miss Autoimmune

Choices (Part One)

When you have a chronic illness you face a lot of choices. For treatment, do you go with a mainstream medicine, restrictive diet, or an alternative therapies path? Within each of those options, there are a whole host of further choices to make. Which medicine? Which diet? Which alternative therapy? Then there’s the question of how long you give each option to work, before moving on to another. Each option has many pros and cons. If you choose medication, you may be facing some pretty heavy-duty side-effects and long term risks, but a natural or alternative method does not automatically equal safe either. Many natural therapies and diets come with side effects and risks too. Then there’s the fact that whichever option you choose may not work, in which case permanent damage from the diseases is a risk. 

Any path you take, there will be someone who judges you for it, or who will make well-meaning suggestions that you should have taken another. I have irreparable damage to my body that shows I haven’t always made the right choices. Or perhaps another way of looking at it: I have irreparable damage in my body that shows that none of the available options have been successful for me. 

If you have more than one illness, the choices get even harder. Recently I had to choose whether to stay on, or go off a certain medication. Basically, the medication was making my systemic symptoms considerably worse, while at the same time keeping my joints stable. Going off it would hopefully mean the systemic symptoms would calm down, but the trade off was that my joints would more than likely begin to progress again. It was a tough choice, but in the end I chose to go off it, and I’m just hoping that it was the right one. I probably won’t ever be able to say for sure, but for the moment I feel okay about it.

Sometimes, I have to make choices about which symptom I can cope with being worse on any given day, because the things that help one disease will make another worse. Something as simple as clothing choice can mean choosing which type of sick I’m going to be. If I get too hot, my tremors get worse, but if I get even a little bit cold my hands and feet turn blue and I sometimes start to have difficulty breathing. If I have too much exposure to sunlight it means rashes and generalised flares, but long sleeves in summer means overheating and lack of sunlight means vitamin D deficiency.

In terms of diet, I have tried many things, and each came with a list of benefits and trade offs. Going vegetarian helped my joints and inflammation levels, but my anaemia, stomach problems and PCOS got worse, and I developed migraines. Going grain-free helped my stomach problems, but my joints got worse, my inflammation levels shot up, and my bladder problems increased. Basically it comes down to cutting out any one food group, means eating more of another, and that can come with downsides for some people. I often joke that I am just allergic to food in general, as there are very few things I can eat a lot of without getting some ill effect. So while there are many cases of these diets being successful for other people, they are not right for me.

I often hear people preface their success story with “if it works for me, it can work for anybody,” or a statement of similar meaning. This never seems to be based on anything in particular - just a strong belief that theirs is the right path. The fact is, just as not every medication works for every person, not every diet or alternative therapy will work for everyone either. If your path is working for you, that is fantastic. Keep doing what you are doing. But if you want to recommend it someone else, maybe try prefacing it with something like: “this worked for me, maybe it might work for you too?” because this is a much more realistic assessment of the situation.

Overall, my choice is a combination of methods. There are a number of food groups which I limit to avoid flares of particular symptoms, though the only thing I have completely cut out is gluten. I am on some medications, and I haven’t ruled out adding more to the mix, but there are some that I have stopped due to the side-effects well outweighing the benefits. I take some natural supplements with the support, and encouragement of my doctor, and although there are some alternative therapies that I will never try again because of bad experiences, there are others that I’m willing to give a go. I’m a big believer in the power of positive thinking, and if it’s possible to cure yourself with either laughing or cathartic crying, I sure do enough of both to give it a decent shot.

All of these things combined help to keep me feeling okay-ish, but they’re not a cure. For me, it is a balancing act, and quite a precarious one at that. Perhaps I would have success if I chose one path or the other, and committed to it fully, or perhaps the whole balancing act would tumble down and I’d be left sicker. Either way, I’ve resolved to be okay with whatever choices I make whatever the outcomes turn out to be. I’ve also resolved to be okay with the fact that whatever I choose to do, there will be someone who thinks it’s the wrong thing, or who thinks their method is better.

Until I find someone who can successfully cure diseases with chocolate, I’m probably never going to agree that one method is better than another. Instead, I tend to fall back on my favourite place to get advice, The Sunscreen Song:

“What ever you do, don’t congratulate yourself too much or berate yourself either – your choices are half chance. So are everybody else’s.” 
Advice, like youth, probably just wasted on the young – Mary Schmich (featured in Everybody’s Free (To Wear Sunscreen)) 

Part two coming soon... 
Thanks for reading, 

Little Miss Autoimmune