I'm doing a happy dance!

I had an eye appointment today – the result: there’s no inflammation in my eyes, no sign of problems being caused by medications, and while my left eye is still quite dry, my right eye is fine. Even better, my vision has improved and my eye muscle control is back within the normal range. Yay! It was so nice to go to see a medical professional, and have them tell me things were good!

Things have been better lately, in general. My new medication combination kicked in about a month ago. To be honest, I’d kind of given up hope that this would work. I knew it would take a while for the new med to start working, but when it had got to three then four and five months on it, and I was still getting worse rather than better, I figured it just wasn’t going to happen. Around the six month mark, I started to notice some improvements.

For most of this year, things have been pretty shaky (no pun intended) in terms of my health. There were days, weeks sometimes, where the tremors were so bad I couldn’t get around the house unassisted, and even when my limbs weren’t actively shaking I still felt pretty unsteady on my feet. There was more than one occasion where I lay on the floor, unable to get up after falling, and many times where I got stuck on the couch because my legs had gone numb and I couldn’t stand. There have been many days where I couldn’t leave the house because my guts were too messed up, and many, many days where one nap just wasn’t enough. There’ve been days where my eyes have been too blurry to do anything useful, and days my speech has got so slurry and word-salady it’s hard for people to understand me.

Things are by no means perfect now. My bad days are still pretty bad – still plenty of shaky legs, messed-up guts, word-salad and nap-taking – but on the good days I feel far closer to normal than I have in months. And there are far more good days than there used to be too.

On Monday I did a yoga class. It wasn’t entirely a success – my shoulder has been hot and inflamed since, and a few of my other joints are complaining loudly, but I did the whole class! That’s a long way from not being able to get off the couch. As I walked home from the class – yes, I even walked to and from the class, which would be FAR more impressive if it wasn’t in the building next to mine – this song came on my ipod. I think that was the universe’s way of reminding me to reflect and be thankful for how far I’ve come. Thanks Universe!  

Thanks for reading

Little Miss Autoimmune

Can you push through?

I had one of those days today, where you relive and rehash arguments from years, and I mean literally YEARS ago. In this case, it wasn’t even really argument I was relieving, it was one of those “this person said something I really didn’t agree with, but I didn’t have an answer to coherently explain why I didn’t agree with them, so instead I said nothing and now five/six years later am still trying to come up with what I should have said” situations.

Basically this is what happened:

I was running a training about chronic pain, and part way through one of the attendees interrupted. He started talking about people who train in martial arts, and who push through the pain. If they can do it, why can those of us suffering from chronic pain, just “push through.” Aren’t we just being too soft on ourselves? Aren’t we just not trying hard enough?

I didn’t know what to say. I couldn’t think of a way to coherently explain the flaws in this argument, but fortunately as I struggled to come up with an answer, one of the other participants in the training (who also happened to be a good friend) came to my rescue and redirected the discussion.

Today, I finally figured out what I should have done.

Now, before I continue, I’d like you all to try something for me. Raise your arms above your head – right up so that they’re touching your ears, elbows straight. Now hold them there, while you keep reading.

This is an argument I’ve come across a few times. The idea that you can “push through” pain. Yes, in some situations this is true – martial arts or other sports training, getting a tattoo or piercing perhaps, getting yourself to safety after an accident, and I’m sure other situations that I can’t think of right now. The difference with all of these situations is that there is an end to them. In my younger, pre-sickness days I did play sports, and while I don’t have any tattoos I have had a few piercings done. Yes, you can hold it together even if it’s hurting when you’re training, but you can be damn sure that as the pain starts to get to you, you’ll be watching the clock waiting for it to be over. Not only have I had piercings myself, but I’ve watched other get theirs, and I’m fairly sure the phrase most often said by piercers is “almost done” indicating that people are holding on for the moment that it’s over.

How are your arms feeling? Have your shoulders dropped down a little? Are your elbows bending a little? If they are, get them back up there! I didn’t say you could drop them! Could you keep them up there for another five minutes? How about another hour? How about THE REST OF YOUR LIFE?!

Maybe you could keep them up there for an hour, but in that last five minutes you’d be watching the clock, and as soon as that hour was up you’d drop them with a big sigh of relief and satisfaction. Maybe you could keep them up there for a day, if you got to take breaks and stretch occasionally.

Unfortunately, you don’t get to take breaks from chronic pain. There’s no end point in sight either. People with chronic pain do “push through” everyday, but it’s a different type of pushing through. We have to push to get out of bed, feed ourselves, and all those other daily tasks that healthy able-bodied people can take for granted. As an able-bodied person, you can’t decide what is or isn’t possible for someone living with chronic illness. If someone tells you they can’t do something, there’s no point telling them they should push themselves, because most likely they already are.

If you haven’t already, you can drop your arms now. Feels good? Don’t take that feeling for granted.

Thanks for reading

Little Miss Autoimmune

Childhood Asthma Returns

Unfortunately, it’s time to add another Little Miss character into the mix. For those of you who have no idea what I’m talking about, back when I first started this blog I made Little Miss/Mr characters for each of my autoimmune disorders. 

Mainly this was just an excuse to play with paint. Behind it though, was the idea that if I was able to find humour in something as bleak as a list of diseases, I could find humour in just about anything, and if I’m laughing, I cope better. Simple as that.

Today, I went back on asthma medication.

I had asthma very badly when I was a child, but I’ve been symptom free for over ten years. So much so, that when I was searching for an inhaler over the weekend, I couldn’t find one that hadn’t expired in 2002! A trip to the doctor today confirmed it is indeed my asthma returning. I left with non-expired reliever and preventer inhalers, and, after a discussion about the difficulties of using inhalers with bung hands, a spacer.

Now, seeing as asthma is an autoimmune disease, I bring you Little Miss Asthma:

Last year, when I got the diagnosis of SLE, I wasn’t feeling particularly in the mood for humour. In fact, I wasn’t really in the mood for much other than lying on the couch feeling sorry for myself. Subsequently, a Little Mr Lupus character did not get created.

Here he is now though. He has a hat. He’s jaunty.

Thanks for reading

Little Miss Autoimmune.

Coeliacs and other stuff

The other night I was ordering pizza, and when I requested a gluten-free base, the guy asked me if I realised the side I had ordered contained gluten. I didn't - I'd wrongly assumed it was gluten free, so I thanked him for letting me know and changed my order.

He replied: "Yeah, I make a point of telling people, because otherwise you might get a sore stomach but just think it was your women's problems."

Honestly wasn't quite sure how to answer that.

It's really awesome that this guy is looking out for people with allergies, but for the record, Coeliac Disease and menstruation - not that easy to confuse.

There are a lot of misunderstandings out there about Coeliac Disease and about gluten intolerance in general. This is the first time I've had anyone confuse it with "women's problems" but there is confusion none the less.

This is my understanding of the differences.

Firstly the names - "Coeliac Disease" "Coeliacs" and "Celiacs" are all referring to the same disease. I think Celiacs is an Americanised spelling, but don't quote me on that. I mostly use "Coeliac Disease", just because that's what's printed on my Medic-Alert bracelet, but they are generally used interchangeably. 

Coeliac Disease is an autoimmune disorder. In an affected person, their immune system has identified gluten - a protein found in wheat etc. - as a disease, and therefore responds to the presence of gluten by attacking it and in the process the person's gut is also damaged.

As far as I know, a gluten intolerance is not autoimmune in nature. My understanding is that, similar to intolerances to other foods, the problems occur when the body is unable to digest the gluten resulting in stomach upsets and, in some cases, other symptoms.

For both, the treatment is the same - avoid gluten.

I think sometimes those of us with Coeliac Disease or gluten intolerances get a bit of flack for being difficult or "picky". Much of this, I think, has been down to a trend in recent years of people going gluten-free because they think it's healthier. In a lot of cases (but not all!) gluten-free substitutes are higher in fat, calories and sugar, so if you don't have an intolerance or allergy, I'm not quite sure it fits the bill of "healthier". However, that's just my opinion and not in any way intended to be taken as medical advice. If you're thinking of going gluten-free, whatever the reason, that's for you and your doctor/dietician to decide.

Eating a gluten-free diet is not a choice for me, nor is it a case of wanting to make eating out more complicated. In the past, when I've accidentally eaten gluten, I've been so ill I've lost five or six kilos in a matter of days. I found out I had Coeliac Disease ten years ago, back when all gluten-free substitutes tasted like sawdust. Believe me, if it was a choice, I wouldn't have done it!

Thanks for reading

Little Miss Autoimmune

No-Handshake Awkwardness

Like many people with forms of autoimmune arthritis, I find it difficult to shake hands. The joints in my hands are often swollen and painful, so if someone goes for a firm job-interview type grip it’s likely to be excruciating for me. I have Raynaud's phenomenon, which mean I wear gloves or mittens all the time and somehow that just seems too much like shaking hands with a sock-puppet. Added to that, I walk with a crutch on my right-side, so if I’m standing I’m going to have to juggle crutch, bags and balance issues to be able to greet you.

I don’t expect anyone to be psychic. Even if you know someone has autoimmune arthritis, that doesn’t necessarily give you an idea of whether they will or won’t shake your hand, as it affects people in different ways. This can sometimes lead to some awkwardness, when a handshake is refused. Of course no-one wants to be left hanging, so I’ve compiled a handy list of appropriate and inappropriate ways to deal with the situation.

Appropriate Responses

• Carry on as if nothing has happened

This is really the best way to go. It’s not really a big deal, and the quicker you move on the quicker the awkwardness goes away.

• Acknowledge the awkwardness

If you don’t feel you can just move on, acknowledging the fact that the situation is a bit awkward, and then moving on, is a good way to go. 

• Laugh

Not at the person! Never at the person. But if you can all laugh when you feel uncomfortable, it breaks the tension and all is well in the world again.

Inappropriate Responses

• Insist on shaking hands

If someone is refusing to take your hand, whatever the reason, don’t push them. Often if the issue is pushed, I feel I have to relent and shake hands. This may seem like it makes the awkwardness go away, but it will likely cause me pain which will result in me avoiding you in future.

• Punch the person

Sometimes you might want to try and find an alternative to shaking hands. There are some alternatives that are suitable – waving, a gentle pat on the back, a hug (depending on how well you know each other!)

Some things will depend on the person and how their joints are affected. A high five or fist pump may be okay (as long as it’s gentle) or for some people this may be even worse than a handshake. If you’re not sure, ask. 

Then there are other alternatives that are never a good idea – punching people hard on the shoulder for example (yes, someone really did this and yes they did then have to catch me when I nearly fell over.) FYI, people generally don’t like to be punched under any circumstances, but if you’ve just met them and they’ve just told you they have a chronic pain condition, this is a very bad idea and you’re likely never to see them again!

• Bring it up repeatedly/apologise repeatedly

You don’t really need to apologise in this situation. As I said, I don’t expect people to be psychic, so I’m not going to get upset that you didn’t guess that I don’t want to shake hands. However, repeatedly drawing attention to it, either by apologising or just making comments/jokes about it can get frustrating. There’s only so many times you can say “it’s fine” or fake-laugh before you start to feel silly and embarrassed. The quicker you move on, the better.

• Imply the person is germ-phobic and/or racist

This is a sure fire way to make a situation more uncomfortable! Generally if you make this kind of comment, you will get a stunned silence in reply as the person tries to figure out whether you’re serious or just have a dark sense of humour. I think the time this happened to me, it was a case of weird sense of humour, but I felt horrible about the possibility that they really were offended. In general, try not to take offence about the fact that someone won’t shake your hand. It’s not about you – a greeting is just not worth that much pain.

- Little Miss Autoimmune

Open letter to parents of sick kids (from a now grown-up sick kid)

Dear parents,

First and foremost, you are doing a great job. You may think no-one sees how hard you try to make things better, but your kids do and they love you for it more than you can know, even if they don’t say it.

The following are not criticisms by any means. They’re just some things that I remember from being a sick kid, that I wish I could go back in time to say to my parents. I’m not a child-psychologist or anything impressive like that, so if you don’t agree with what I say, that’s okay. It’s just my opinion really, and you don’t have to agree with it at all. 

1)      Your child doesn’t want you to feel guilty

Many parents of sick kids feel guilty. Some site genetics as the reason, or choices they made for their children when they were babies. Whatever the reason, your child won’t want you to feel guilty about it. In fact, if they knew how bad you felt, they would probably feel guilty that you feel guilty.

You cannot change genetics. We all have them, and if you trace them far back enough, we all have hidden illnesses in our family trees. This is out of your control, and therefore not something you need to feel bad about.

The choices you made for your child were done with the best intention. Whether you vaccinated or didn’t. Whether you picked them up when they cried, or let them settle themselves back down to sleep. Whether you breastfed them or not. There is no definite evidence as to what causes autoimmune arthritis diseases, and at times either choice will have been thought to be a possible reason. The time spent wondering if this or that caused it, is entirely speculation, and to quote Baz Luhrmann “about as effective as trying to solve an algebra equation by chewing bubble gum.”

Your child has probably not thought about any of these things. If they ask you why they are in pain, or why this happened to them, they are most likely not really looking for an answer. It’s quite likely that they are just communicating to you that it hurts, and that they don’t like the fact that they are sick. They know that you already know, but they still need to be able to tell you.

When they’re older, and question whether genetics or environmental factors the cause of their illness, they won’t do it with blame. They will see the good intention behind the choices you made, and love you for that – not ask you to feel guilty.     

2)      Worry and anger sound similar to kids

It’s absolutely natural to be worried, when you have a sick kid. It’s also perfectly normal to be angry some of the time. Sometimes these sound the same to kids, though. They won’t always be able to tell the difference between “your voice is rising, and you’re frowning because you are so worried on my behalf” and “your voice is rising, and you’re frowning because you are angry at me.”

If you notice that your child reacts as if you have told them off when you are worried, it may be that they are interpreting your worry as anger. Don’t feel bad about this. Every parent, whether they have a sick kid or not, will have this misunderstanding at some point.

If your child is old enough to understand, have a conversation about the fact that worry and anger can sound similar. Explain that you’re not angry at them. Your child may be able to tell you what they’d like you to do or say instead, or you can talk about ways for them to understand the difference between worry and anger. There may be something you can say or do to make it clear for them.

When you’re stressed out it’s hard to think about, let alone change, what your face and voice are doing, but having a conversation about it can help stop it being misinterpreted.

3)      Your child will probably still rebel

Unfortunately, having a sick kid doesn’t give you a free pass on rebellion. Your child will still have all those pesky hormones, and that need to assert their individuality, just like every other teenager.

They may do this in the average way – alcohol, boyfriends/girlfriends you don’t approve of, sneaking out. Or they may start to rebel in a way that is closer to their world of being ill. It may be that they want to be in charge of their meds, and the choices about those. They may reject any suggestion you make, just because you made it.

There’s no simple fix for this, just as there’s no simple fix for the average child or teenager rebelling.

Let them be responsible for their meds if it’s possible to do that. They will need to learn to handle this themselves, and make choices about them, at some point anyway. Keep an eye on it, but try not to intervene unless you notice something of big concern.

If they reject your suggestions of what will help, make the suggestion but don’t try to convince them of it. Even if they say no initially, if you’re not persisting they have nothing to fight you on. They can make the decision themselves, and come back to it. If you argue about it, it will be harder for them to change their mind (or admit that they’ve changed their mind) but if they are able to say no once, then come back to it later on, there is no shame in it for them.       

Mostly what it boils down to, is love them, and keep them safe. Parents of sick kids have the hardest job in the world, and when the kids are grown up, they will look back and understand and appreciate it all.

Yours Sincerely

A (now grown-up) sick kid 

Little Miss Autoimmune  

I wrote this as a resource for World Autoimmune Arthritis Day

IAAM has established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20^th, online and during all time zones, making it a 47-hour online event.  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help them and their supporters in managing their diseases. Thus far, WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!

*IAAM is the official Host and Event Coordinator of World Autoimmune Arthritis Day.  www.IAAMovement.org

Find the WAADwebsite here

Register for WAAD here

Croc-rage

70% of the internet is just a giant ball of rage...

While I was struggling my way through the rain on my daily walk yesterday, I noticed one of my feet was getting particularly wet. When I got home, I checked, and yes indeed, the bottom of my shoe had worn through. I was a little upset, as these are undeniably very cute shoes, but then I remembered I had bought two pairs and retrieved the other from the wardrobe.

My eczema and psoriasis get worse with a number of things – sunlight, certain foods, and the most annoying one: the glue in shoes. That means my options for footwear are slippers or crocs/crocs knock-offs. Given that I have arthritis in the joints in my feet, slippers do not give enough support, so crocs are my only option.

There is an irrational amount of rage directed towards crocs. There are comedy routines, facebook posts, entire blogs dedicated to croc-rage.

I don’t understand it. No-one is making you were crocs, so your comments about how ugly they are etc. etc. are bullying to people who do. Plain and simple.

Seriously people, get over yourselves!

Usually if I’m in the room, when someone starts an anti-croc tirade, they will eventually realise and say “oh, but it’s okay Helen, you have an excuse to wear them.”

The last time I wore high-heels, I had pain so bad in my feet and lower back, it made me want to vomit. Before I discovered I was allergic to the glue in shoes, I had to sleep with my feet covered in steroid cream and wrapped in gladwrap because the rash was so bad and subsequent infections were causing a serious risk to my health. So no, wearing crocs is not a choice for me, but what if it was? 

Why exactly do I need an excuse to wear whatever footwear I want? Sometimes I think your shoes are ugly, but I don’t say it because that’s mean and I’m a nice person. When people make these kinds of comments, I usually laugh along and pretend I find it funny. I don’t. It’s mean. And honestly, it makes me like you a little less. Okay, I’m kidding about that last part, but it certainly doesn’t make me like you more!

You don’t know why someone is wearing crocs. Maybe they have chronic pain too, but are not “out.” Maybe they have a skin allergy which you don’t know about. Or maybe they just want to be comfortable, and you actually don’t have the right to make them feel bad about that. I really like my crocs. My growth was stunted when I was younger, and so I have to shop in the children shoe department. I love that I can wear pink shoes with butterflies on them, and if you think that makes me childish or immature, you live in the land of no imagination.   

I think the thing that frustrates me most about croc-rage is how do you have enough energy for it? I barely have enough energy to put my own shoes on in the morning, let alone care about what someone else is wearing.

If you don’t like my shoes, just look at my face. I know sometimes tall people are confused by the fact that my face and feet are closer together than yours, but seriously, it’s not that hard.

- 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.

(Back to) Invisible Illness

I’ve talked before about the “but you don’t look sick” aspect of invisible illnesses, but I’m not sure I totally got it myself. When I feel awful, I tend to assume I look awful, even if that’s not what other people are telling me.

The other day my friend took this photo for me to use as my author pic, on my publishers website. When I saw it, I suddenly got what people meant. I don’t look sick. If I saw this person on the street, serious illness would not be the first thing that came to mind.

What you can’t see in this photo is that we had to delay taking it, because a week earlier my right eye had swollen completely shut. You can’t see that only a couple of days before, my face was covered in sores, some of which had turned into ulcers and my nose wouldn’t stop bleeding. You can’t see that this was one of the first times in months I’d been able to wear my hair out, because it had been falling out. You can’t see the crutch on the ground beside me or the gloves and coat I normally wear all the time to keep raynaud’s at bay. You can’t see that the bracelets around my wrist are actually not one, but two, medical alert bracelets, and you can’t see that I’m wearing fluffy bedsocks over my tights because my toes kept turning blue that morning.

I weighed up whether to post this. I like the way I look in this photo. I did not like my swollen-eyed scabby face look, so much so that the only person I let see me like that was my Dad. Of course I don’t want to look sick, but I do want people to understand that even though I don’t always look sick, I am.

World Autoimmune Arthritis Day’s video Invisible makes this point much better than I ever could. Check out the video here, or find World Autoimmune Arthritis Day on facebook here.

Thanks

Little Miss Autoimmune

Some Good News

Today, I had my appointment with the Neurologist. I’ve been secretly (and not-so-secretly depending on how closely you know me) freaking out about this appointment.

A couple of days ago, one of my friends asked why I was so nervous, and I had to stop and think. In the end, I came up with three reasons.

1) I was worried the neurologist would be horrible to me. This may sound like an irrational fear, but the neurology department at Wellington Hospital do kind of have a rep for being rude and unhelpful. I had to see them when I was a teenager, and while they weren’t horrible I was pretty glad I didn’t have to see them regularly.

2) I was worried I’d have to go through a barrage of MRIs and other unpleasant tests, only for them to say: “Well, we’ve ruled everything out. Surprise, surprise, it was lupus all along.”

3) And this was the hardest one to say aloud: I was worried they might not rule everything else out. I was worried that I may actually have something like MS, on top of everything else.

Well, it turned out none of those things happened!

The Neurologist was really lovely. He was thorough and helpful, and even cracked a joke or two during the appointment. He didn’t get impatient with me when I was slow to... well everything I do is a bit slow really, and didn’t act like I was just being difficult when I was too short to climb up onto the bed easily (you’d be surprised how many doctors seem to expect me to spontaneously grow to make it simpler!) He helped me out when my leg started spazzing out and I lost my balance, and was very reassuring and encouraging about all the symptoms I’m having rather than suggesting they’re “all in my head.”

I did have to do some balance, and other neurological tests, but no bloods, CTs or MRIs (thank God – I’m super claustrophobic!)

The end result was that there’s no evidence of a progressive neurological disease, and while my nerve function is affected, there’s no sign that there’s any damage. The most likely cause for all the tremors, pins and needles etc. is that inflammation from all the autoimmune stuff is pressing on the nerves causing them to get a bit confused. There is the potential that one of my meds (for PCOS, not for lupus) could be adding to problems, so I need to check in with my GP about that, but that in itself is nothing major.

So, the best course of action is simply to continue to try and get all autoimmune issues back under control. No, it’s not a magic pill, but it does mean that I’m already on the right track and there’s hope that everything will settle down eventually.

While none of the things I was worried about actually happened, I don’t think that worry was wasted. While I agonised over all the negative possibilities, I was mentally preparing myself for them. I certainly wouldn’t have been happy, had any of them occurred, but I would have coped because they wouldn’t have been coming at me out of the blue.

As it was, none of them happened and it all went really well. So the niceness of that, more than made up for all the worry.

- Little Miss Autoimmune