Six Months on with Bindi

Strangers often come up to me and ask about Bindi. I mean, how could they not when she’s so cute? Most assume I’m training her, but when they find out she’s working with me, they generally have two questions:

How long have you had her? and How have you found it?

The answers?

Six months and Life-changing.

It’s hard to put into words how much of a difference Bindi has made for me. There are the obvious things. When my blood pressure is low or my joints are really sore, it’s such a relief to have her pick things up for me, so I don’t have to struggle down to the ground or risk passing out. When my legs are unsteady, having her beside me can keep me upright as we make our slow progress home. If I do end up falling, having her lying beside me with her head on my chest is a source of comfort and makes me feel less vulnerable. Also, she’s not been trained to do this, but she has somehow learned to pick up when my blood pressure is dropping and lets me know by biting on her lead or nudging my hands. She generally notices before I do, giving me time to sit down and avoid passing out. 

Sitting next to me, being my bodyguard after I fell down.

In the last few months, I’ve developed retinal migraines. These are episodes where I get lights and colours obscuring my vision for around 15-20 minutes at a time. As you can imagine, it can be quite scary not being able to see anything, but again, Bindi’s presence has been really reassuring. With the help of Julie from Assistance Dogs New Zealand, Bindi has been learning to do some guiding, and will now locate and take me to a chair when prompted. Knowing she can do this means I’m not so worried about one of these episodes happening while I’m out. I feel like we’re a team, and whatever happens, we’ll be able to handle it.

Of course, my original reason for applying for an assistance dog was my sleep disorder. This has also massively improved. I went from being genuinely scared that I was going to break my neck in my sleep, to having weeks where I don’t have any sleep disturbances. Having a person staying with me often made my sleep disorder worse, as their emotions and frustrations played into it, but Bindi’s inherently non-judgemental nature provides reassurance and comfort. When I do go sleep-wandering, I seem to do it in a less dangerous way now, as even if I’m running away from a nightmare, I factor Bindi into it. Whereas in the past I just got up and ran, often straight into a wall, my first thought now is to get Bindi away from whatever scary thing I’m dreaming. Since she’s reluctant to get out of bed in the middle of the night, it takes a while and gives me time to wake up properly. This isn’t something we could have predicted or trained her for, but it’s had such a positive effect regardless.

Then of course there is the emotional side of it. Having a soft little friend nearby at all times is just so heart-fillingly wonderful. I have so much love for Bindi, it’s hard to express. I don’t think there has ever been a time in my life before where I have laughed every single day. There is nothing like watching her play with her toys or do roly-polies down the bank at the park when she's off-duty. She does so many funny things and is just generally so cute it makes me smile every time I look at her. If I am ever sad, just sitting on the floor with her and playing is the best thing to make us both happy.

Trying to be a lapdog and reminding me it's dinner time (while she's off-duty obviously!)

Cuddling one of her toys

Now, all of that stuff is great, but this is a situation where the whole equals more than the sum of the parts. The difference she makes to my life is just so much more than this. There really is only one way to describe it – life-changing.

One of my neighbours commented that he was amazed by the change he’s seen in me since having Bindi. He works near the park we go to several times a day, and so sees us out walking. He asked if Bindi was for my anxiety, as he said he was really impressed with the visible change in my confidence. 

The funny thing is, I wasn’t aware that I looked anxious before, nor had I noticed a change in my anxiety levels initially. It took me a while to realise what it was he was picking up on. It’s like Bindi has freed up a part of my brain. In the past, a part of me was constantly occupied with worrying about the things I mentioned above – falls, dropping things, my blood pressure, my lack of sleep. Now, I don’t have to constantly assess whether my legs are getting unsteady or if I’m at all dizzy, or wondering what horrible dream I’m going to have tonight, because I know I have a safety net if something goes wrong. 

This is a cliché, but it’s like I’m been able to let out a breath I didn’t even know I was holding. I’m able to relax in a way I’ve never had the freedom to do before, and I’m so incredibly thankful to Bindi and Assistance Dogs New Zealand for that.

If you’d like to support the incredible work Assistance Dogs New Zealand do, you can donate through my Givealittle page for ADNZ, or consider sponsoring an ADNZ puppy.

Thanks for reading,
Little Miss Autoimmune

Changing Seasons and Blood Pressure

People often ask me whether my symptoms get better in Summer. I think this idea probably comes from the common belief that people with osteo-arthritis only get joint pain in the cold or when it rains. I'm not really sure if there's any truth to this for osteo-arthritis; it certainly isn't true for forms autoimmune arthritis, but still the common belief lives on. My answer to the question varies, depending on how well I know the person asking, and if I think they're really interested or just making conversation. The honest answer? Some things get better in summer, some things get worse, but overall I don't think my condition has ever been stable for long enough for me to say for sure whether it's the season or something else making a difference.

I'm sure many meteorologists will disagree with this statement, but in my opinion New Zealand only has two seasons. We go straight from winter into summer (then sometimes back again the next day.) In Wellington it's windy all year around, and it's not that uncommon for people to get hayfever all year not just in Summer. 

The worst times for me tend to be the points of season-change. I somehow manage to be surprised by the weather change every year, and find myself completely unprepared. In Summer balancing long sleeves for sun-protection against not getting over-heated, usually leaves me one kind of sick or another, and going into winter I just about always find myself in the middle of Raynaud's or asthma attacks at least once after going out without adequately warm clothing.

A few weeks ago, I "blood pressured" myself by forgetting that when it's hot I need to be a bit more careful about managing my low blood pressure and low electrolytes. I got straight out of bed, reached up to take the clothes peg holding my curtains together down... and woke up on the floor a bit later. It was stupid and totally avoidable, so after a chat to the lovely ambulance staff (yep, had to press the medical alarm) I stuck this up beside my bed: 

This is the first thing I see in the morning, and so far following it is working. I've decided the "official" name for my blood pressure issues is loop-de-loop blood pressure as the problems come from it dropping sharply when I stand up, then over-compensating into the high range after a few seconds, causing short-lived but blinding headaches. Following this routine and taking things slowly helps it to stay a bit more on the level. On bad days, I have to switch tap water for electrolyte water and add in some black coffee (which personally I can't stand!) but all in all the floor and I have managed to keep our distance from each other.

Thanks for reading,

Little Miss Autoimmune

Hungry, Hungry Hippos

I think most of my generation in New Zealand grew up watching repeats of Friends and The Simpsons every weeknight. In most situations you can make a reference to either show, and everyone in the room will have seen the episode so many times themselves they instantly get what you mean. Personally every time I hear an oven timer go off, I feel the urge to yell: “My Fajitas!” and when my hair gets particularly curly: “It’s the humidity!” And I know every time one of my friends mentions Hungry, Hungry Hippos that what they’re really playing is the waiting game.

It’s possible another diagnosis may be on the horizon for me. Nothing confirmed yet; it could turn out to be absolutely nothing. I wasn’t going to post about this, until I knew for sure either way but then I realised “the waiting game” is a big part of living with chronic illness. Whether it’s test results, approval for new medications, treatments to start working, or answers to the cause of new symptoms, it feels like we’re always waiting for something.

I went to see my GP to get some forms filled in last Monday, and in the course of the appointment, I asked her to check my blood pressure. I was pretty sure it was low. I’ve been having more and more dizzy spells and headaches lately, especially upon standing up from sitting or lying, and I’ve had a couple of unexplained falls as well. It was, as I suspected, low but we were a little surprised by how low. At the time it was taken, I was feeling fine which suggests it may be dipping even further when I’m having dizzy spells. My GP suggested I should start drinking coffee to raise it, and when I mentioned I’d found drinking water with added electrolytes helped, she checked my blood test results and found my electrolytes levels are also low. I think there are probably a lot of reasons this can happen, but the one that my doctor thinks it could be is Addison’s disease. I don’t know too much about it, and I’m resisting to urge to google anymore because the Wikipedia page freaked me out. From what I have read, I do have all the symptoms, but given that they are all fairly non-specific symptoms and could be attributed to any one of the other conditions I already have, that doesn’t really mean much.

Autoimmune disorders tend to run in packs, so after you’ve been diagnosed with a few it’s not really all that much of a surprise when another one is added. Even so, I have to admit the possibility of this one has unsettled me a little, especially as I hadn’t even considered anything new might be wrong, before my doctor brought it up. My GP said it’s quite hard to diagnose, and she’s on leave for the next month, so for now it’s just extra blood tests, self-monitoring of my blood pressure... and playing the waiting game.

Whenever you’re waiting on something the advice everyone gives is don’t think about it, but as we all know that’s like trying not to think about elephant when someone tells you not to think about elephants. Still, I’m doing my best not to worry about it at least.   

The waiting game sucks. I really need to get Hungry, Hungry Hippos.

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.