It's OK to be Unreliable

One of the things I really hate about lupus is that I am unreliable.

It's not just me.  When I asked what other lupies had learned from lupus, there were a couple of people who responded about being unreliable.

It's not just that we feel bad about being unreliable, but that we also take on how others feel about our being unreliable.

We feel guilty and frustrated because we have to cancel plans.

Our friends and family may get frustrated or upset with us for constantly cancelling plans.  Some of them even give up making plans with us.

Their response makes us feel even more guilty and frustrated.

If they stop making plans with us, it also helps make us feel more isolated.

It's time for a line from my Granddaughter's favourite movie: "Let it go."  (Actually, my Granddaughter thinks the movie is named, "Let it Go", but that's a different story.)

We're going to be unreliable. We're going to plan for things and then be too sick to do them.  But that's no reason to stop planning things.  Beating ourselves up isn't going to change anything.  So we just have to accept that we will miss out on some things, but if we keep making plans, we will get to enjoy actually doing some of them.

We are responsible for how we react to our own being unreliable.  We are not responsible for how other people react to it.  Their thoughts, feelings, and actions are their own.  We don't control them. If they can't come to terms with a friend or family member being sick, that's their issue.

Tell Me Your Story

You may remember that in 2013 my World Lupus Day project here was the Warrior's Wall. I asked
you to tell me briefly what you wanted the world to know about lupus, and many of you very brave lovely lupies sent in your photos and comments.

This year, I want to do a project that will go all through May.  I want your stories in a longer format.  Throughout May I want to share posts written by lupies who read this blog.

I  don't want to tell you exactly what to write about, but some ideas might be:

• Life before/after lupus. What changed?
• How has your family responded to your condition?
• Adventures in brain fog or pain or fatigue, or any other symptom.
• What do you wish you'd known when you were first diagnosed?
• Who are your heroes? How do they inspire you as you deal with lupus day by day?
• What do you think when you think about the future?
• Is it "better" to have a visible or invisible illness?
• What do you use for strength to get through the bad days?
• What's the best way to make the most of a good day?
• Have you found a way to do some everyday tasks that is less painful/fatiguing?
• Whatever else you'd like to share with the world in a blog post.
• If you have a blog, facebook page or other place where you talk about lupus that you would like to share, please include the link.

Please try to keep it to 1000 words or less.  (A bit more than the 100 word limit I gave you in 2013.)

Email your post and your photo, with your name, country and year diagnosed to:

iris@sometimesitislupus.com.  Please send it by the end of April, so I know if I'm publishing one a week, one a day, five a day, or whatever throughout the month.    (Oh, usually, I ask for just your first name, but this is a whole blog post, so whole name would be great - but just first name is still OK if you're a bit shy.)  Please put "My Story" as the heading on your email.  

I'm looking forward to reading stories from lots of lovely lupies. The more the merrier.

Ranting About Rip-Offs

I was reading yet another news article about the Belle Gibson scandal, and wondered what lessons there are in the whole mess for those of use who are sick, and who spend a lot of time online.

These are the things that jumped out at me:

• Someone being pretty is not necessarily the same as them being believable. (Despite what the advertising industry may have spent our whole lives trying to condition us to believe.)
• Not everything on the internet is trustworthy, no matter how well it is dressed up.
• There's no shame in admitting to having been tricked by a fraud. Some frauds are so good they convince themselves.
• If a "cure" or "treatment" seems miraculous, or too good to be true, it probably isn't true.
• The internet is a great place to go to for support, to be able to see how others have handled the challenges we face, for a sense of community.  It's not a substitute for a doctor.
• If anyone ever tells you to not follow your doctor's instructions (unless they're saying get a second opinion - which is appropriate any time you feel unsure); you should find alarm bells ringing.
• If someone tells you "big pharma" or "big medicine" is only out to make money out of you, and they're trying to sell you a product (or multiple products, usually ridiculously expensive) of their own, alarm bells should be ringing.
• Journalists can sometimes be taken in by a believable fraud, the same as everyone else.  Talk television and radio programs, and non-news magazines, are less likely to check their sources than serious (or "hard") news services.
• A tiny bit of truth (or a little bit of preliminary research, taken out of context) can be stretched into a dangerous myth.
• Human beings are mysterious, complex creatures.  We don't always know what motivates a person.  Not everyone's motives are good.
• It can be hard enough assessing another person's trustworthiness when we meet them face to face - it's even harder on-line.
• That prince in Nigeria isn't really going to send you a million dollars in diamonds; the unclaimed inheritance in England isn't really coming to you; and you cannot replace your medication with superfoods.  In fact, don't replace your medication with anything, unless you discuss it with a doctor first. 
• A healthy balanced diet is a great thing for pretty much everyone, and should improve your overall health.  On its own, it won't cure cancer, or lupus or anything else.  Eat healthy food because it's good for you, not in expectation of a miracle.
• Miracles may well happen. (In fact, in hospital chaplaincy, I'm sure I witnessed a few.)  But they're "miracles" precisely because they're not supposed to happen, and not expected to happen, and completely unpredictable.  You can't recreate a miracle.  If someone recovers against all odds, that doesn't mean that everyone who tries to copy them will have the same result.
• When people are desperate enough, they will try anything (note, the "slapping therapy"stories in the references.) Be aware there's always someone out to make a quick buck from someone else's desperation. 
• Now that I've digressed to the "slapping therapy"; I suspect that if those parents had gone to the doctor who was treating their son's diabetes and said: "Would starving our young child for three days and then slapping him to read his bruises help with his diabetes?"  I'm fairly sure the doctor would have explained the difference between a diabetes cure and child abuse. Ask your doctor, no matter how convinced you are from your own reading. 

I know there are many people who will feel hurt over Belle Gibson deceiving them, many confused, and quite a number outraged about the money not getting to charity, and the possibility that people may have died unnecessarily by following her recommendations.  But the issues this situation raises are much bigger than just one blogger running a scam (or suffering Munchausen's - the jury seems to be out).

The bigger questions are about things like who to trust, how much of what we read we can believe, how to recognise a fraud, and how we will use information we find.  The more time we spend on the internet, the more often we will have to face those questions with regards to what we're reading.

References:
 http://www.theguardian.com/society/2015/apr/29/jules-gibson-munchausen-by-internet-sickness-bloggers-fake-it-whole-pantry?CMP=soc_567

http://www.news.com.au/lifestyle/health/belle-gibson-no-none-of-it-is-true/story-fniym874-1227315232565

http://www.theage.com.au/comment/belle-gibson-is-only-the-latest-in-a-long-line-of-hucksters-peddling-bad-science-20150427-1muqet.html


http://www.mamamia.com.au/news/slapping-therapy-death/

http://www.news.com.au/national/aidan-fenton-7-vomited-and-died-after-slapping-therapy/story-fncynjr2-1227329512272?utm_content=SocialFlow&utm_campaign=EditorialSF&utm_source=News.com.au&utm_medium=Facebook

Finding Support

When I was first diagnosed with lupus, I didn't know where to turn for support.

Our get-together today.

That's not unusual.  In some places there are great, well-established support groups, in other places, there isn't.  Support groups have to be started by someone.

I eventually found the Lupus Association of Queensland, not because there was some big, organised entity with that name.  No. It exists because a lovely lupie named Gail couldn't find any support when she was diagnosed, and took the initiative to find some other people in the same situation.  She found Annie, and between them, they have organised informal get-togethers on a fairly regular basis for quite a long time now.

There are a lot of lupies who owe a great debt of gratitude to these two ladies who, despite their own health problems, went out of their way to create a community. Although ALQ has a name that sounds like some big official organisation, it really is a community, a network of lupies who are there for each other on-line, with an occasional get-together.  

As people living further away from Brisbane have joined the group online, it's been spreading.  There have been get-togethers over a bigger area, as other lupies have realised we can continue what Gail and Annie have started. 

I had hoped to be able to keep going to Brisbane for get-togethers after I moved, but have found that the drive is getting far too much for me.  So I offered to organise a get-together locally.  It was a great success, with about eight people there today.  

Now I have to say I have great support from family and friends, but there is something special about being able to spend time with other people who are going through the same things.  It makes a difference to be able to feel like a "normal" member of the group (even if this group's "normal" is a little different to everyone else's.)

We had a great morning, and before we left, we booked the cafe again for six weeks' time. (We weren't going to risk that I would forget to do it.) 

A special thank-you to Wray Organic Cafe and Market in Ipswich, for wonderful food, and great service, and for little extra touches (like putting apples for us in each of the place settings) that made us feel very welcome.

Thank you to Ipswich Mayor Paul Pisasale, who shared the event on his Facebook page, to help us connect with other lupies in the are who might not have already found us online. 

Maximum Energy

One thing most lupies have in common (and nothing is exactly the same for all of us) is that we have a very limited amount of energy to use in the day.  We have to budget it carefully, and set priorities as to what we will use our precious little bit of energy on.

My daughter observed the other day, that I always seem to have energy for my granddaughter, more than I have for anything else. It's like she's medicine for me.

It's not that I actually have extra energy, just that I am willing to use whatever energy I have with her.  If she needs me, or if she'd like a story read, or to play, I'm always up for grandma duty. Even if I have no energy for anything else all day, I won't miss the chance to spend time with her.

I asked other lupies on the Sometimes, it is Lupus Facebook page whether they also had something that they always found energy for, no matter what.

It turns out I'm not the only one who would use every last bit of energy on someone they loved.  Grandmas said their grandchildren would always get their energy.  Mums said their children would always get their energy.  Other lupies said their partners. Some said they'd always find energy for their friends, while some reported they no longer had friends because they just couldn't find the energy.

Some, of course, said their jobs or housework, because those things were necessary.

Lots of times, lupies find ourselves with no energy left. We push ourselves just that bit beyond our limits - put some energy on the credit card.  Eventually, it catches up.  But some things are too important to miss, even if they mean we will be sick for a while.

Related post: The Energy Budget

Wego Health Fourth Annual Health Activist Awards

Wego Health has announced their fourth annual Health Activist Awards.

If you have a favourite health activist - a blogger, a tweeter, a Google plusser, a Facebooker, anyone who informs, or entertains with regard to your health issues, nominate them now.

The categories this year are:

• Advocating for another
• Best in show blog
• Best in show community/forum
• Best in show Facebook
• Best in show Google +
• Best in show Instagram
• Best in show Twitter
• Best in show YouTube
• Best kept secret
• Best team performance
• Health activist hero
• Hilarious health activist
• Lifetime achievement
• Rookie of the year. 

Many of you lovely lupies go to multiple sources for information, support, understanding, finding someone who just "gets it".  Here's your chance to nominate the best of them.  

(If you nominate someone I might not have heard of, please add a link in the comments on this post, so I, and other readers, can find out about them too.)

Apology, if needed

This message (sender's name deleted) was sent to the Sometimes, it is Lupus Facebook account....

I can't believe you people call yourself christian and you denying other religion into your group telling them they make you sick the fact that they practice another religion ill like to know what kind of bible you own I tought this was a free religion country telling people tey make you sick because they pagan a real christian would try to convert you are out. Of respect sickness has nothing to do with religion, or gender, or color I hope you get hit so God doesn't preach that you are fully ignoran and stupid and you certainly not preaching the bible you are holy mother...

Now, while I don't make a secret of my personal faith, I certainly don't intend to disrespect anyone of any other faith.

The only thing I tend to censor as it comes into the Sometimes, it is Lupus social media pages or in comments on the blog, is when people give "advice" that suggests lupies should abandon their medical treatment (especially without consulting their doctors.)

While I was in hospital chaplaincy, I worked as part of a multifaith chaplaincy department, and I would hate to think I have disrespected anyone's strongly held faith.

If I have done so, I apologize unreservedly.

"Expert" Advice

Sometimes I wonder if I am some kind of a freak.

You see, I go to actual doctors to deal with my health issues, rather than Google or television talk shows. And I do what my doctors say to do.

I'm starting to think that makes me a freak, because, there are so many experts around now, who know everything about my condition. They know that if I ate a healthier diet, had a positive attitude, or ate the latest superfood featured on some tv talk show, I wouldn't be sick.  I don't need those dangerous drugs I take.

Really, the drugs I take are dangerous.  That's one of the reasons I regularly see doctors so they can make sure the drugs are doing more good than harm.

That's me. I'm a freak.  If I trusted the internet, I could be like all the experts who give me advice.

People don't even need to know what's wrong with me to be an expert on my condition. For example, the latest random person to see my profile on a social media site and fall in love with me (yeah, that happens) asked me what I do for work. I explained I don't work as such any more. I'm on a disability pension, but I blog and write indie books as something to do with my time. He told me he was sorry about what had happened to me but I needed to get over it and move on.  That was great advice, from someone who didn't know what had happened to me or whether or not it was still happening. Then he asked me what I was looking for in a relationship. I explained in no uncertain terms that I'm actually happy with my life and not looking for a relationship. (And if I were, it certainly wouldn't be with someone who would tell me how to live my life without knowing anything about it.)

I've also been told that people with autoimmune diseases cause them ourselves. If I stopped making myself sick, I wouldn't need all my drugs.

Then there's the diet thing.  Every week there's a new "superfood" which is another name for an ordinary food with a lot of marketing money behind it. If it's not a single superfood, it's a whole diet, or an exercise program.

There's also the "big pharma doesn't make cures, it makes patients" thing.  Usually the people who promote this one, then go on to promote "natural" therapies - made by the big "natural" pharma companies. Like big pharmaceutical companies, the big "natural" pharmaceutical companies are actually in it for the money - the only difference is they don't have the strict regulations about things like proving their products do something.

After all of the advice I get so often, I have to admit, I am recalcitrant.  I choose to continue to be a freak.  I keep going to actual doctors, and I keep following their advice. So I keep taking dangerous medications.

Lupus Bites!

Today, the 10th of May, is World Lupus Day.

This year, I've been asking lupies to complete the sentence:  

Lupus bites because...

• it shows no mercy and does not care who it destroys. (Elli)
• the symptoms (major or minor) can hit with no warning. they can affect every waking moment and everything you do in some way or other. (Sal)
• it interferes with my active family lifestyle. (Elizabeth)
• there is no cure for this invisible stranger. (Roz)
• it tears me in two... I am no longer who I was. My body and mind don't match my identity. I have a life half lived and dreams pass me by. I seek a way to find myself amidst confusion and pain. I look for a way forward and try not to loose hope... yes lupus bites, an unseen enemy with fangs bared. I fight on and pray for a cure. (Tammy)
• its insidious, invisible nature destroys the body long before you know you've been bitten. (Roz)
• no one knows how to kill the invisible beast. (Roz)
• it's painful, tiresome, not understood by others, and makes day to day hard to get through sometimes. (Donna)
• it zaps your energy. (Lisa)
•  Lupus bites off more than it can chew! Invisible to the naked eye, it destroys each and every part of our bodies, bite by bite and no one can stop it. (Dianne)
• it makes me feel like I have lost a huge portion of my identity. I am not who I used to be and truly miss being able bodied and energetic! I will always be strong, but won't always have the energy to back it up! (Stephanie)
• I'm sick of being sick. (Janine)
• it makes you feel older than you are. (Cassy)
• my disease is not a joke from a TV show. (Eryn)
• you create new Olympic sports called body tossing to make it 5 feet to the bathroom. (Bree)
• I don't look sick but I AM sick. (Nicky)
• its hard to enjoy summer not being in the sun. (Julie)
• it steals your life. (Claire)
• we have to take so many different medications to treat our chronic illness. (Cheryl)
• it's aptly named the wolf because it sneaks up & attacks the mind, body, & soul. It tears a person to shreds until there is nothing left. The more pain it inflicts - the better it seems to enjoy it.When you think it's finished with you - it returns to inflict more pain and suffering. Lupus bites???- It sure does..... (Cheryl)
• it nearly killed me. (Scott)
• I wanted to be a doctor but who wants a doctor that can't be around infectious people? (Kate)
• it's extremely unpredictable! (Teresa)
•  it is hard to diagnose and it took 3 years of pain, belittling, and exhaustion for someone to finally hear me. (Hollie)
• I'm sick, but I don't look sick; I felt 70 when I was 17; none of my family or friends can really understand what I go through. (Joyce)
•  it robs  me of what tomorrow might be. Everyday before I open my eyes I take inventory of my body. What moves, hurts and what doesn't. (Mary)
• I like going outside, I like having fun,
• but the rays are bad from certain lights and the Sun,
• it hurts so bad when there's so much to do,
• it doesn't always growl to warn, that it's about to hurt you.
• Lupus bites.
I'm too young to feel this old! (Patricia)
• it has taken friends away from me, and taken their lives away from them. (Beth)
• there's only so many times you can cancel at the last minute before people stop asking you to do things. (Iris)
• it causes pain! Lupus bites all my joints. (Cheryl)
• everyone doesn't believe the horrible pain I go through.Lupus bites when lupus wants to cause pain. (Valerie)
• sometimes you forget you have it and pay the price later when you can't get out of bed or worse have to be hospitalized. (name not given)
• I leave in my car to run errands, and get a mile down the road and forget where I had plans to go. So then I go through the coffee stand and treat myself. (name not given)
• I have a great boyfriend but I'm married to my many pills and insurance. (name not given)

This one didn't fit the dot points (because it's a poem)
Lupus bites because
  I like going outside, I like having fun,
  but the rays are bad from certain lights and the Sun,
  it hurts so bad when there's so much to do,
  it doesn't always growl to warn, that it's about to hurt you.
  Lupus bites.
  (Mike)

And finally, my response.... Lupus bites because it does't just affect me.  It also affects everyone who cares about me. It means I am unreliable. I let people down, and I hate that.

Keeping with the theme of today's post, I've added a new design (well, a variation on an older design) to the Shirt Shop.

What If?

I asked lupies on social media a while ago what they would get, if they had one huge bucket of money
to spend on just one thing for their health.

There were some interesting answers.

One person was so glad of finally having a diagnosis and treatment that she felt she didn't need anything more.

Others wanted to improve their ability to exercise, one suggesting a heated therapy pool, another a personal trainer with special qualifications in dealing with conditions like lupus.

 Someone else suggested that if they had money for something big, it would be for a huge Australia-wide lupus awareness campaign.

As for me?  Well, since my daughter and her family have moved into the next flat, I've come to realize just how much I depend on them. I don't need to be looked after all the time, but sometimes I do need help with all kinds of odd little things - from zips I can't do up, to things I can't reach or lift, and on really bad days the shoes I can't reach to put on.

But as her baby grows up, her flat is getting smaller, and they won't be able to live there for ever.  So if I had the money, I would buy us a suitable home.  Ideally, it would be a house with a granny flat, or be a duplex with room for my daughter and her family in one home, and for my son and I in an adjoining home. Maybe even when my son is eventually married, there could be some way to expand to have three homes which were close or linked. The idea would be to give everyone independence, but also to always have family close at hand when needed.

That's probably a crazy daydream, but it would mean I could be as independent as possible, for as long as possible.

Well, Bloggone It!

Why do I blog about lupus? Isn't just living with it bad enough? Why write about it as well?

(Yes, this is a meta-post, I'm blogging about blogging.)

When I was diagnosed with lupus all I knew about it was what I'd learned from watching House on tv.

Despite what you might think from House, however,  lupus is quite common.  Knowing about it isn't so common.

So I set out to learn about my condition, then decided to find a way to share what I was learning to help   raise awareness of a disease that although common, is not very well understood by the community.

What the blog has developed into, however, is something different.

I found that the people reading it weren't generally people who were wanting to find out something about a condition they'd just heard of.  Most of my readers were people with lupus, or a similar chronic condition, or people who had friends and family members with lupus.

Readers started saying things like "you say what I was trying to say."

That's when I took Sometimes, it is Lupus into other social media as well as the blog, as a chance to interact more with readers.

I realized that what was really needed was a chance for lupies to know they were not alone, and to be able to express what life was like for them.

Now the blog is still about my life with lupus, but it has an added dimension.  Through social media, I'm also  listening to other lupies, and trying to bring their experience into the blog as well.

Now, Sometimes, it is Lupus, isn't just there trying to tell the healthy population what lupus is, and it isn't just me saying "this is what this disease is doing to me", although it still does both of those things.  It's also an opportunity to give a voice, if only a small one, to a community of people who might otherwise feel isolated and alone.

Want to join in the conversation?
Find Sometimes, it is Lupus on Facebook, Twitter, and Google+.


This post written as part of a blog carnival hosted by Restoring Quality of Life. If you'd like to see how other bloggers responded to the same topic, the blog carnival is here.

It's The Worst

Lupus bites!

It just does.

I hate all of it: the pain, the fatigue, the limitations on what I can do, the constantly swallowing pills, the risk that any organ could suddenly fail, the avoiding sunlight, etc, etc, etc.....

But for me, the absolute worst, the one thing that just tops everything else for horror, is that my brain doesn't work the way it should.

I've always considered my brain to be the best part of me. I'm intelligent, I'm creative, I've always had a great memory.

But now....

Now, I do and say stupid things. I was holding the baby the other day, talking to her, when my daughter interrupted: "Ah Mum, that's not me, that's Johanna."  I knew that, right? I know that my daughter is 22, and the four month old is her daughter. Well, I do right at this moment.  At that exact moment I was a little lost.

I hate not being able to lead worship - and worse I hate that the last time I did, the sermon I'd written suddenly didn't make sense and the words all seemed to be gobblydegook and I didn't know what to do about it.

I'm not particularly keen on hallucinations, either.  Seeing a strange woman without a face in my flat was disconcerting, to say the least.

Writing is just a part of who I am, and it has been since I started writing stories as a child. But now, half the time I can't spell, have trouble with punctuation, and write ungrammatical sentences.

I have trouble organizing my thoughts, and even more trouble organizing myself to do anything.

So that's the absolute worst for me.... messing with my body was bad enough, but once lupus started messing with my brain, things just became far too frightening.

But that's just my experience.

The one thing that's consistent with lupus is its utter inconsistency, so I asked some lovely lupies on social media what was worst about lupus in their experience.

For lots of people, the pain and fatigue were the worst thing.

For others, it was things they had lost: their jobs and income, their homes, their independence, the ability to do things they used to love, even some friendships.

For some the worst is the cost of managing lupus, some with insufficient health insurance or no health insurance at all.

For some the worst was the unpredictability of lupus - of not being able to plan because there's no way of knowing in advance what will be a good day and what will be a bad day.

For lupie mums, feeling that they're not able to care for their children the way they want to, even being in too much pain sometimes to hold their own babies, is the worst.

Some lupies have other health issues as well, throw in cancer or something equally horrible, on top of the horribleness of lupus and you have a nightmare Stephen King couldn't have scripted.

For some lupies, the vampire life of avoiding the sunlight is a huge sacrifice, especially if they have children who want to do things outside.

Some have found the mental health issues that are often a part of lupus - anxiety and depression - are the worst thing.

For a number of people, the worst thing was becoming isolated.

One lupie who answered, said the worst was when she wasn't diagnosed and didn't know what was happening to her.  Knowing what was wrong and beginning treatment had come as a huge relief.

Some of the people who responded were friends of lupies, who found the worst things were:when their friend forgot they'd been there for them; when they had to watch their friend go through the pain and fatigue; or when they lost a friend to lupus.


As I said at the beginning, lupus bites.

With bodies that don't bend where they used to, pain in places we'd never known we had places, fatigue that makes Sleeping Beauty's 100 year nap seem reasonable, the uncertainty of whether or not we'll be able to do tomorrow what we can do today..... there's a lot that's bad.  But the absolute worst? That's different for all of us. And it's different on different days. Because that's how lupus is. The only thing that's consistent about it is its utter inconsistency.


Want to join in the conversation?
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Lupus and Lies

Your friend has lupus.  You can see she's in pain and you say, "Are you OK?"

She says: "I'm fine."

Why is she lying to you? Why is she minimizing what's going on? Doesn't she trust you?

I know why I do it.  I asked on social media, and found that a number of other lupies have similar reasons to mine.

We do it for ourselves, because:

• we don't want to always be talking about lupus.  It never goes away, but we still want to try to stop it from taking over our entire lives.
• sometimes it actually feels worse when we acknowledge it. 
• we just want to do and say "normal" things.
• because if we start to talk about it maybe we'll just never stop and we'll be talking about pain, fatigue, memory loss, confusion, rashes, fear, drugs and all the rest of it forever.
• because sometimes what's happening is something that we really can only talk about with someone who's been there (which is where lupus support groups are amazing.)
• because sometimes we feel like being with someone and not talking about lupus is the only time we wake up from the nightmare that we're living in.
• as one lovely lupie said in answer to my question; "I am afraid I will become lupus."
• because if we admit we're in agony, you will say "well, let's go home", when what we really desperately want and need to do is stay out and have a little bit of fun (and yes, we know we'll pay for it later, sometimes it's worth the cost.)
• we don't want to draw attention to ourselves.
• we don't want to be the person who's always complaining.

We do it for you because:

• we feel like all we ever do is complain to you. Sometimes, we want to be there for you, not have our friends and family feel like they always have to be our carers.
• it's bad enough that we feel bad, making you feel bad about it won't make it any better.
• because we're just so sick and tired of lupus that we're sure you must be too.

We do it to avoid (I have to stress, that I don't have much of this at all - very few people have judged me badly simply for being sick, I'm working on other lupies' experiences here):

• being labelled as a hypochondriac, or told we're faking it.
• being rejected.
• being condemned by people who just can't understand how we can be well one day and horribly sick the next.
• losing friends and being abandoned.
• getting stuck in the "but it's not like it's anything serious like cancer, get over it" conversations that leave us trying to explain/justify having a chronic, life-threatening, incurable disease.
• unsolicited, uninformed, and incredibly unhelpful advice.
• people not believing in the symptoms they can't see.

When we say: "I'm fine" or "I'm OK", it usually means something like "I don't want how I'm feeling to be an issue right now, let's talk about something else." I know it sounds like we're talking in code... but really all language is a kind of code anyway.

I don't know about other lupies' family and friends, but mine have learned to decipher much of my code anyway.  For example, just about everyone I spend time with knows that when I say "Let's have a coffee", it actually means, "I'm exhausted. Coffee is an excuse to sit down while I recover, without admitting there's anything wrong."

I Wish I'd Been Told

I didn't know what to expect when I was first diagnosed with lupus.  I was just given the name of

the disease and that was it. I probably would have been told more if I'd asked, but I didn't know enough to know what I needed to know.

Some of the things I would have liked to have been told are:

• "You didn't do anything to cause this."
• "You will get tired. It's normal with lupus. Don't try to keep pushing yourself, it only makes things worse."
• "You can take medication to reduce the pain, but don't expect to be totally pain-free."
• "This will affect all of your life. Try to just accept it, becoming upset about it won't help."
• "It will affect your family, your friendships, every one who is involved with you in any way."
• "Lots of people who know nothing about lupus will give you advice on how to handle your condition. Just try to laugh it off."
• "Your kids will cope."
• "This is how you find a lupus support group....."

That's a few.  

I asked some other lupies on social media what they wished they'd been told when they were diagnosed. Here are some of their answers:

• Danielle, USA. "I wish I'd been told anything. Everything I know I researched on my own."
• Bobbie, Australia. "My doctors have been amazing, and I wouldn't change them. My big surprise has been that people (men) would see me as damaged, broken and too complicated."
• Mary, USA. "I would like to have known how much my life was really going to change. That way I could have started planning for the future at diagnosis."
• Carolyn, USA. "I wish I'd been told when diagnosed. Nobody bothered to tell me for about eight years, and I missed all that medical care. Male doctors don't waste time with older women! I'm still hurt and angry. Thank God for Dr Amanda Luchsinger. She got me to the right people, as did Dr Dumont. Thank you! It really hurt my health not knowing all that time."
• Patty, USA. "That my kids would be OK, even great, growing up with a mom with lupus! It helped shape them into the wonderful young adults they have become."
• Tanya, Australia. "I wish I was told how much Lupus sucks ass! On a serious note, I wish I was told just how much of a life changing roller coaster it would be with all the different symptoms/medicine side effects and all that it does to your body, mind, family and self."
• Lisa, USA. "I wish I was told how hard it would be to find the right doctors to work with to help my conditions as they come and go.
• Frankie, USA. "The emotional and psychological impact it would have on my life."
• Jenn, USA. "Get a great psychiatrist and support group. More emphasis on the mental toll is needed."
• Cindy, USA. "How lonely life would be. If it wasn't for the Lord, I would go nuts."
• Twyla, USA. "I also wish  I was told how lonely this disease can be. If I'm told one more time I'm loved and will never have to face a flare alone again ... just for them to run the minute I have a flare ... my heart breaks each time ... I'm so happy for those of you whose partners are there and supportive!! That's my dream to have someone who doesn't run scared."
• Tosha, USA. "I wish I had been told anything as well. I was told I had SLE and that was about it. The rest I have learned along the way."
• Rosie, USA. "I wish someone had told me that my whole life would change with this diagnosis."
• Christie, USA. "I was under the impression that if I took my meds and rested more I would be fine. I wish I had been told upfront to prioritize everything I want to do and how to plan ahead for busy days so that I'm rested up and can crash as soon as it's over."
• Nidia, USA. "How difficult it would be to have the same life as before."
• Kathy, USA. " I wish I had been told more than the one page handout that I was given that said Don't Panic it's Lupus at which time the doctor said just google the Mayo Medical Site and read, don't look at the pictures!"
• Nikki, USA. "I wish I was told how much brain fog & being tired ALL the time would be such a frequent thing that's out of my hands!! Glad, my kids & hubby usually know what I am trying to say when I jumble everything up, they just chuckle and say bad day??? Makes me smile when I really want to cry!"
• Sheri, USA. "I wish I had been told that I wouldn't be dead in 10 years. I've outlived that estimate by 14 years already."
• Tasha, USA. "I wish people would have told me how hard it is to find good and understanding doctors."
• Kandy, USA. "How little everyone knows about it or how little they care to learn about it."
• Jen, USA. "Your life will go downhill and will be debilitating. The pain will be so bad that you won't be able to get out of bed. Oh you'll also lose all your friends."
• Holli, USA. "Get ready for everything to change!"
• Beth, USA. "The symptoms I was experiencing were normal for a person with Lupus. I needed to know what Lupus fog and fatigue was."
• Amy, USA. "I wish that I would have known the personal loss of freedom. I am homebound so much of the time and it is hard. Especially when I was a very active person prior to my disease."
• Julie, Australia. "I have got to tell you the one thing I wasn't expecting was CNS damage and neurosurgery. My optimism occasionally takes a battering but thankfully the ability to laugh at myself helps pull me through  I have learnt to be more grateful for good days, and take nothing for granted. I don't think anyone or anything anyone can tell you can truly prepare you."
• Katie, England. "Wish I had been told to make friends with people with Lupus! That's been the biggest help to me."
• Corie, USA. "I wish that I was told how my whole life would be turned upside down and inside out."
• Twyla, Canada. "How difficult it is living with an invisible chronic illness."
• Joke, The Netherlands. "Wish he would have told me how much my life would change. He did tell me it is a terrible disease and he can only do so much for me and that's frustrating to him too."
• Pam, USA. "I was not told I read it on my Chart."
• Peg, USA. "Wish they had told me not to be out in the sun!"
• Veta, Canada. "I wish I had been told the seriousness of Lupus and not just given the basic 'You have an autoimmune disease.' How it leads to and is connected to so many other diseases. also how Lupus would affect the rest of my life. Lastly,what changes I need to make to have the best quality of life possible."
• Katie, USA. "The emotional burden it puts on those closest to you, also the emotional toll it take on you mentally as well as physically."
• Nada, USA. " I wish that they would have told me how much it would change my life. How at times you could feel ostracized, lonely, how no matter how well you took care of yourself, you would still hurt, still feel like a train wreck. How this affects the whole family and that it can tear families apart. How you can't depend on anything from hour to hour because your body changes literally with the weather. Sometimes you feel like no one understands. You try to explain but others just don't get it. One by one friends will drift away because just like cancer or a terminal illness, they just don't know what to say. They get tired of you having to reschedule a lunch date or a movie because you wake up that day feeling so sick you just need to pull the covers back over your head. I am so thankful for my doctors, and truly thankful for my two sisters, Ann & Millie, my niece Jennifer, and my son and his family. They are my rocks. they keep my spirits up, they motivate me and they are there with me every step of the way."
• Cindi, Canada. "I was so grateful that I didn't have AIDS it didn't matter at the time!"
• Mary, USA. "That symptoms will flare it's ok to feel bad and stay in bed and when you do expect criticism and sideway glances from those who think you're faking it."
• Debra, USA. "I also had to research everything. It would have been nice to know anything more than where to pick up the meds!"
• Julie, USA. "How each day is so different. It is the inconsistent symptoms each day and having a difficult time making future plans. Future being the next day, week or end of the month. Also how to deal with the extreme brain fog, fatigue, and full body pain."
• Diane, England. "That all my symptoms were typical and what to expect."
• Wendy, USA. "I'm sending you to a rheumatologist and she will test you with major expenses and tell you its inflammation from arthritis which you already know plus lupus."
• Sallie, Australia. "Wish I'd been given the right diagnosis seven years earlier. Other than that I was told only that I had SLE and that I'd need plaquenil for the rest of my life and given another list of meds I'd need.  I wish I'd been told how much it would affect every other aspect of my life: physical , mental, financial, social and emotional. I've learnt along the way."
• Eva Marie, Philippines. "It took my doctors six months to discover. cbc unstable. Fever very low grade and  I fall on the 11 categories for lupus symptoms."

Positive Attitude?

There was an interesting conversation on the Sometimes, it is Lupus Facebook page today.  

It began with my good morning post: 

Good morning lovely lupies. 

It's Ekka holiday here in Brisbane. (That's our agricultural show, billed as "the country comes to the city".... showbags, sideshows, fireworks, that kind of thing.)

I didn't even consider going. The thought of hours on my feet, being jostled by crowds, and the fact that all the viruses that are circulating all around the state gather together in one place, just made me decide it really wasn't worth it. 

What about you lovely lupies? Are there things you don't even consider now, that you might have found fun before?

This began a conversation with people talking about what they had given up, and what they had substituted, such as a night out at the movies instead of a night out dancing - how we have found creative ways to be happy and do fun things despite our limitations.

Then this comment came through:

Sorry but why let lupus continue to dictate your life? Why stay at home whingeing about it? Get positive with your life. Learn to rule lupus and not let it rule you. It's depressing enough having it. The world's not going to stop for you. Stop feeling sorry for yourselves. Mind over matter people! Stay positive.

I haven't identified the person because I don't want to embarrass her further.  There were enough indignant and hurt responses to the original comment.

I quote it here because it's a good talking point.

No-one wants to miss out on life. None of us want to sit around doing nothing all day.  Regular readers will know my struggle with the whole issue of being "retired" so young.

But there are two kinds of positive attitude: realistic and unrealistic.

A realistic positive attitude will say, I know my limits, and will make the absolute most out of life within my limits.

An unrealistic positive attitude will say, I am going to act as if my limits don't exist and just push myself until I collapse.

Most of us have tried the unrealistic attitude, which is perhaps more accurately called denial, at times, and have had to deal with the consequences.  Denial is one of those things people tend to go through at some stage in grief, in learning to come to terms with something we have lost. 

Lupies learn the hard way that denial can only last so long before reality sets in.

So am I sitting around whingeing (Australian slang - moaning and complaining)?  I don't believe so.  I think I have a fairly positive attitude on life.  I do take my knocks and do get upset by them at times, but most of the time I think I find creative ways to make the most out of the life I have.  Most of the lupies I know are doing the same thing.

Superhero

I've got my superhero cape on today...

So what have I done that makes me a superhero?

Well, superheroes are strong, they meet difficult challenges, they have special skills, and they fight evil.

I've been strong.  Even though I feel as though I'm too sick to eat, I ate cornflakes for breakfast, and an apple for lunch.

I've met some difficult challenges. I got out of bed, twice. I've run the carpet sweeper over the carpets and a broom over the hard floors.

I've exercised some special skills.  I've swallowed two handfuls of pills so far today and have another handful later.  I've squirted gooey eye moisturiser stuff into my eyes.  I've cut my own hair (something people on low incomes tend to learn.)

I've fought evil. Well, OK, I know that lupus is just a disease, probably an unfortunate coincidence of genes and environment, and not able to make any moral decisions of its own - so it's not capable of actual evil.   Even so, some days, just surviving seems like a battle against all the forces of evil in the world.

So that, in a nutshell, is why I'm a hero today.

How about you?  Yes, you reading this.  I'm not letting you get away with just reading and leaving today.  Tell me, either in the comments here or on one of the Sometimes, it is Lupus social media pages: why are you a superhero today?

Lupus Support and Awareness on Social Media

The Lupus Links Page includes links for social media.  It's out-of-date.  It's always going to be out-of-date, because there seems to always be something new, and I just can't keep up.

So here's a chance, if you have a lupus support/awareness page on any social media, please add your link here, so we can share them further.  (When it asks for "name" give the name of your page as you want it to appear.)

This link list will also replace the social media link list on links page.

I'll try to do this on a semi-regular basis, so everyone can discover whatever exciting things are out there that they don't already know about. If you have a lupus-related blog and would like to share this list, click get the html code here .

2000 Likes on Facebook

Just had to share with everyone. The Sometimes, it is Lupus Facebook Page has now had 2000 likes.

Why not come on over and join us? Join in the conversation and meet lots of lovely lupies.

Great Lupus Facebook Pages

A while ago, I invented an "award" for on-line lupus support and advocacy.

Today, I'm sharing with you five lupus-related Facebook pages which are well worth following, and which definitely deserve an award.

1. World According to Lupus (OK, I already gave Atlanta this award, but I made up the award, I can make the rules for it.)
2. Lupus and Me 
3. The Lupus Effect
4. Mrs Lupus
5. Teens With Lupus

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

And the Award Goes To....

Have you seen those blogging "awards" given by one blogger to another? They're a nice idea, and it is nice to know that another blogger thinks you're worthy of an award, but there's so many strings attached - you have to answer a set of questions, acknowledge where you got the award from, and forward it on to so many more bloggers. It's kind of like a chain letter or email.

Today, I'm inventing my own blogging (well, on-line advocacy/awareness) award for lupus.

There's no catch to this one.  The recipients don't have to formally accept it, they don't have to pass it on, they don't even have to tell anyone they got it if they don't feel like it.

The judging criteria for the award is simple: I'm impressed with something you've done. (That's nice and objective isn't it?) It will be awarded on an irregular basis, whenever I feel like it.

Without further ado, the Inaugural Too Many Pills Awards for Lupus Leadership go to.....

For keeping lupies entertained and informed simultaneously, an award has to go to Atlanta Titus at World According to Lupus on Facebook and on Twitter and Pinterest.

For encouraging people to advocate for all kinds of Chronic Illness through her Chronically Awesome Facebook page and the Blog Support Daily, and award ought to go Jules Shapiro.

And for always being there whenever a lupie needs someone on Twitter, I think I'd give an award to Sheri (Lupus Diva)  @osaxy on Twitter.

There's lots more I'd like to give an award to, so maybe the Too Many Pills Award for Lupus Leadership will become a regular feature of sometimesitislupus.com .

This post written as part of Wego Health's Health Activist Writer's Month Challenge.