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

Answers

I’ve been fairly slack about blogging lately. Usually when I’m not updating regularly, it’s because I feel I have nothing interesting or useful to say. Lately it’s been the opposite. There are too many things to say, but formulating them into coherent, bite-sized posts has been too difficult, and so despite starting many drafts, not much has actually made it into public view.

I’ve had a fair few medical appointments lately. Some of them have gone well, some not so much, but I think maybe the easiest way to update is just in a summary of the things I’ve found out.

 1) My Vitamin D levels were super low.

From what I’ve read, the prognosis of SLE with low Vitamin D levels is not good, and so it’s important to check levels or failing that just start on a supplement. Reading this had worried me somewhat, as I was also aware that pretty much the entire population of New Zealand has low Vitamin D. So much so, that GPs are not even allowed to request the blood test anymore. My GP told me that she has actually taken to just starting people on a Vitamin D supplement without the blood test, as it’s unlikely that they’re NOT low. Specialists are allowed to order the blood test however, and so my rheumatologist had tested mine.

As SLE is photosensitive (reacts to sunlight – rashes and/or generalised flares) I avoid direct sunlight, and slip-slop-slap and wrap anytime I’m outside. Therefore I was expecting my results to be low. I just wasn’t quite expecting them to be quite so low.

Google tells me that Vitamin D levels can be explained like this*:

90-100 is the optimum range. You want your level to be here, for best health

50-90 is within the “normal” range, but in terms of vitamin D, you want to be optimum not just normal

32-50 is considered deficient

Levels should never be under 32

Levels under 20 are considered critically low

My level was 21, so you can see from the above that that wasn’t good. I had ten days of daily supplements, and now am on monthly, so I'm hoping my levels have improved.

2) My blood pressure is low

I’ve been having dizzy spells, and I wasn’t sure why. As a teenager, my blood pressure was always slightly low and then fairly often it would drop suddenly and I would get to know the floor a little better. I still don’t really have an explanation for why that used to happen. Eventually “my blood pressure just drops suddenly for no reason” became the reason. It stopped happening around the time I first started on DMARDs, so I have suspicions it was related to the autoimmune stuff all along, but I guess I’ll never know for sure.

I haven’t quite got to the regular fainting stage yet, but I have had a couple of crashing-into-walls, or grabbing-the-nearest-person’s-arm moments though. It may sound weird, but I was quite relieved to see the dizziness reflected in my blood pressure. Even though it doesn’t really change anything, being able to say “I’m dizzy because my blood pressure is low” rather than “I’m dizzy for no particular reason” feels slightly better.

3) The random swelling in my tongue andthroat is not an allergic reaction

When I described what had been happening, my nurse explained that it’s not an allergic reaction, but most likely from lack of saliva. My mouth is very dry, and this is probably causing the spitting blood in the sink issues too. My nurse has sjogrens syndrome herself, and said that the same thing has happened to her. Basically the tissue in your mouth and throat gets irritated from being so dry and then swells, leaving you feeling like you’re choking. It explains why antihistamines didn’t help, and that the swelling eased when I drank water and cooled down. I’ve been using dry mouth rinses and gums more often, and been careful to always have a bottle of water at hand. I’m still getting occasional swelling and bleeding in my mouth, but it does seem to be keeping it at bay.  

There’s heaps more to update on, but this is more than enough for one post. Hopefully I’ll get my act together soon and start doing that stringing-words-together-coherently thing soon :P

Thanks for reading

Little Miss Autoimmune

*Please don’t take this as medical advice. I have no idea whether this is accurate or not. As I said, it’s just what google told me.