Often when people find out I have arthritis, they say something along the lines of "Is that very painful?" or "That must be really difficult." My response is usually along the lines of "Oh, no, it's fine." or "Oh, you know. It's not too bad."
That is a lie!
Living with arthritis is incredibly hard. It's not one big difficult thing, it's 1 million small difficult things. Arthritis makes everything hard. Even something as simple as brushing my hair, can be a huge struggle.
I've heard many times from other people with autoimmune arthritis how frustrating they find the misconceptions people have about arthritis. I realised, I'm probably contributing to those misconceptions by downplaying how bad it is.
Of course, this doesn't mean I'm going to go out and complain for half an hour every time someone asks me if it's painful, but I could say something like: "It's very painful, but I cope with it." or "Yeah, it is difficult, but it's part of my life and I deal with it as best I can."
Buckle Me Up http://www.iaamovement.org/ have suggested that instead of saying we have 'arthritis', we say we have 'autoimmune arthritis.' Hopefully, that way, instead of getting the standard response of "but you're too young to have arthritis" or "my mum has that - she takes ibuprofen" people will ask "what's autoimmune arthritis?" If enough people start saying this and follow it up with a quick explanation about the difference between autoimmune forms of arthritis and degenerative forms, it won't be long until we don't need that explanation any more.
Little Miss Autoimmune
Tuesday, November 9, 2010
Tuesday, November 2, 2010
I get a stomach ulcer and positivity goes out the window...
Well, it's all pretty much there in the title. I found out yesterday I have a stomach ulcer.
I've had symptoms for a few months, but didn't really take much notice. I had a persistent stomach ache, but I put that down to being anxious, or having indigestion, or being hungry (despite the fact that eating made the pain worse.) It wasn't really a problem until about a week ago when the pain became unbearable and I had times where I couldn't stop dry wretching.
It was probably unfortunate that I had blogged about positivity a few days before, because I did not feel very positive at that point. Fortunately for everyone else, I lost my voice on the same day, so I was not terribly vocal about my lack of positivity. A wee bit of it did come out via the internet though.
Oh, that reminds me... I've found this great fibro group on facebook. http://www.facebook.com/#!/pages/The-Fibromyalgia-Fun-House/153222891381838
I don't know how to do that thing where you put the name of something, and that's the link itself, but this should hopefully work. They've been really lovely to talk to, and gave me some great advice, so thank you to them.
Oh, and while we're on the facebook thing, I now have a Little Miss Autoimmune facebook page. There's a link to it above... or maybe to the left... I'm not sure where exactly it's going to be in relation to this post, but I've sure you'll be able to find it if you'd like to.
So, anyway, back to my point. I have a stomach ulcer. It's not as serious as it could be because there's no signs of it bleeding, so that's really good. Unfortunately, it's most likely caused by my arthritis medication, which may mean I will have to come off it. I'm hoping not, as I can't really move without it. The doctor said the medication he's given me to repair the damage can also protect from further damage, so I may just have to stay on it long term. From what I've read, autoimmune arthritis itself can be a contributing factor, but I read that on the internet so I don't know if it's accurate.
It's weird, because I when the pain got bad last week I jokingly said I thought I was developing an ulcer. Then I googled the symptoms and causes and went, hey, maybe I am actually developing an ulcer.
As you might have guessed, this isn't really a proper post. It's kind of just an update to explain why I'm not doing a proper post this week.
Back to regular programming next week.
:-) Little Miss Autoimmune
I've had symptoms for a few months, but didn't really take much notice. I had a persistent stomach ache, but I put that down to being anxious, or having indigestion, or being hungry (despite the fact that eating made the pain worse.) It wasn't really a problem until about a week ago when the pain became unbearable and I had times where I couldn't stop dry wretching.
It was probably unfortunate that I had blogged about positivity a few days before, because I did not feel very positive at that point. Fortunately for everyone else, I lost my voice on the same day, so I was not terribly vocal about my lack of positivity. A wee bit of it did come out via the internet though.
Oh, that reminds me... I've found this great fibro group on facebook. http://www.facebook.com/#!/pages/The-Fibromyalgia-Fun-House/153222891381838
I don't know how to do that thing where you put the name of something, and that's the link itself, but this should hopefully work. They've been really lovely to talk to, and gave me some great advice, so thank you to them.
Oh, and while we're on the facebook thing, I now have a Little Miss Autoimmune facebook page. There's a link to it above... or maybe to the left... I'm not sure where exactly it's going to be in relation to this post, but I've sure you'll be able to find it if you'd like to.
So, anyway, back to my point. I have a stomach ulcer. It's not as serious as it could be because there's no signs of it bleeding, so that's really good. Unfortunately, it's most likely caused by my arthritis medication, which may mean I will have to come off it. I'm hoping not, as I can't really move without it. The doctor said the medication he's given me to repair the damage can also protect from further damage, so I may just have to stay on it long term. From what I've read, autoimmune arthritis itself can be a contributing factor, but I read that on the internet so I don't know if it's accurate.
It's weird, because I when the pain got bad last week I jokingly said I thought I was developing an ulcer. Then I googled the symptoms and causes and went, hey, maybe I am actually developing an ulcer.
As you might have guessed, this isn't really a proper post. It's kind of just an update to explain why I'm not doing a proper post this week.
Back to regular programming next week.
:-) Little Miss Autoimmune
Monday, October 25, 2010
Positivity
A couple of weeks back I had an appointment with my Rheumy. It had been about a year and a half since I'd had an appointment with him (I'd just had phone consultations and appointments with my nurse in that time) and I had this idea that at the appointment he'd be able to give me some magic fix.
Think again.
Basically he said there are very few medical options left for me. My only options were to go on strong painkillers or to try some psychological approaches.
I've said pretty much right off the bat, with my diagnosis, that I didn't want painkillers. I'm not opposed to taking the occasional panadol, but even then I only want to take them when I absolutely have to. In the past my nurse has told me I should be taking it every four hours but that's just not something I want to do. I don't want opiates messing with my head, and I don't want to have to rely on pills to be able to function.
So, we discussed the psychological approaches. My Rheumy was careful to explain that he was not suggesting my pain was in my head, or that I could be "talked" out of feeling pain. This was more about finding ways to live with the pain and achieve my goals despite it. I was a little put off by the fact that the group therapy he was recommending to me was called "Dare to Change." This, to me, implies that they think I'm reluctant to change or that I'm resistant to the idea. Actually, I also think it implies that I need to change my attitude, but personally I think I have a pretty good attitude.
Not long after I was diagnosed I read a couple of articles about chronic pain patients. One said that although things will be more difficult to do when you have chronic pain, you shouldn't stop trying to do them. Yes, you could sit around saying 'well, it's too hard. I'm in too much pain. People shouldn't expect too much of me,' and a lot of that would be true. But how would that feel? Wouldn't it feel so much better to figure out a new way to go about achieving your dreams? Achievements feel so much better than excuses.
At first, I didn't understand what they meant by 'finding a new way.' It sounded kind of new age-y. Then I thought about it. I want to be a writer, but what happens in the months when I my joints get so bad I can't type? Instead of not writing at all (which a times, I admit, I do) I break out the voice software, or the pen, or the friend to dictate to and keep going. That is my new way to achieve my dreams.
That doesn't mean I'm going to go off and work a forty hour week. There is just no way I could do that without ending up in hospital, so it's not just about finding a new way to achieve your goals - it's about working out how realisitc they are. All my life I wanted to be an actor/filmmaker. After my diagnosis, it became harder and harder to work towards this goal. I ended up sitting down, and working out what it was about acting and filmmaking that I liked. I realised it was telling stories that I liked, and writing seemed like a much better fit for me.
The other article talked about how, in general, chronic pain patients have unreasonable expectations that their pain will get better (that's kind of complicated wording, but I wasn't sure how to phrase it. Hopefully you can figure out what I mean.) This could have been really depressing, and for a while it was. I had, up until that point, thought I just had to find the right medication and all my pain would go away. I hadn't realised that even on the best medications, I might never be completely pain-free. Weirdly enough, reading that article was a wake up call for me. I had, up until then, been thinking, 'when the pain goes away, then I'll loose some weight. When the pain goes away, then I'll find a job. When the pain goes away, then I'll write that novel.' That thought pattern had to stop. I had to work out how I was going to live a fulfilling and happy life, even if the pain had to live it with me.
Sometimes, positivity is for other people's benefit. I don't think it would be much fun to be friends with me if I was constantly complaining about how awful I feel, or just generally being miserable. On the other hand, keeping a positive attitude does help me too. The more I focus on the fact that I'm in pain, the more I feel the pain, so being able to laugh and joke about stuff is a good distraction. It also helps that I find life incredibly funny, and therefore find the more ridiculous aspects of my ill health pretty funny too. At times, I think it confuses people when I laugh about the fact that I fell over in my driveway and couldn't get up, or passed out in the middle of the supermarket, but you know what? It really does come down to laugh or cry, and personally I choose to laugh (at least around other people anyway.)
:-) Little Miss Autoimmune
Think again.
Basically he said there are very few medical options left for me. My only options were to go on strong painkillers or to try some psychological approaches.
I've said pretty much right off the bat, with my diagnosis, that I didn't want painkillers. I'm not opposed to taking the occasional panadol, but even then I only want to take them when I absolutely have to. In the past my nurse has told me I should be taking it every four hours but that's just not something I want to do. I don't want opiates messing with my head, and I don't want to have to rely on pills to be able to function.
So, we discussed the psychological approaches. My Rheumy was careful to explain that he was not suggesting my pain was in my head, or that I could be "talked" out of feeling pain. This was more about finding ways to live with the pain and achieve my goals despite it. I was a little put off by the fact that the group therapy he was recommending to me was called "Dare to Change." This, to me, implies that they think I'm reluctant to change or that I'm resistant to the idea. Actually, I also think it implies that I need to change my attitude, but personally I think I have a pretty good attitude.
Not long after I was diagnosed I read a couple of articles about chronic pain patients. One said that although things will be more difficult to do when you have chronic pain, you shouldn't stop trying to do them. Yes, you could sit around saying 'well, it's too hard. I'm in too much pain. People shouldn't expect too much of me,' and a lot of that would be true. But how would that feel? Wouldn't it feel so much better to figure out a new way to go about achieving your dreams? Achievements feel so much better than excuses.
At first, I didn't understand what they meant by 'finding a new way.' It sounded kind of new age-y. Then I thought about it. I want to be a writer, but what happens in the months when I my joints get so bad I can't type? Instead of not writing at all (which a times, I admit, I do) I break out the voice software, or the pen, or the friend to dictate to and keep going. That is my new way to achieve my dreams.
That doesn't mean I'm going to go off and work a forty hour week. There is just no way I could do that without ending up in hospital, so it's not just about finding a new way to achieve your goals - it's about working out how realisitc they are. All my life I wanted to be an actor/filmmaker. After my diagnosis, it became harder and harder to work towards this goal. I ended up sitting down, and working out what it was about acting and filmmaking that I liked. I realised it was telling stories that I liked, and writing seemed like a much better fit for me.
The other article talked about how, in general, chronic pain patients have unreasonable expectations that their pain will get better (that's kind of complicated wording, but I wasn't sure how to phrase it. Hopefully you can figure out what I mean.) This could have been really depressing, and for a while it was. I had, up until that point, thought I just had to find the right medication and all my pain would go away. I hadn't realised that even on the best medications, I might never be completely pain-free. Weirdly enough, reading that article was a wake up call for me. I had, up until then, been thinking, 'when the pain goes away, then I'll loose some weight. When the pain goes away, then I'll find a job. When the pain goes away, then I'll write that novel.' That thought pattern had to stop. I had to work out how I was going to live a fulfilling and happy life, even if the pain had to live it with me.
Sometimes, positivity is for other people's benefit. I don't think it would be much fun to be friends with me if I was constantly complaining about how awful I feel, or just generally being miserable. On the other hand, keeping a positive attitude does help me too. The more I focus on the fact that I'm in pain, the more I feel the pain, so being able to laugh and joke about stuff is a good distraction. It also helps that I find life incredibly funny, and therefore find the more ridiculous aspects of my ill health pretty funny too. At times, I think it confuses people when I laugh about the fact that I fell over in my driveway and couldn't get up, or passed out in the middle of the supermarket, but you know what? It really does come down to laugh or cry, and personally I choose to laugh (at least around other people anyway.)
:-) Little Miss Autoimmune
Tuesday, October 19, 2010
There's only so long you can be a bitch...
When I was first diagnosed with arthritis I was a bitch. Hmm... that kind of sounds like I was a bitch and then I got diagnosed and I wasn't anymore. What I mean is, in the first few weeks after I was diagnosed, I was so depressed and angry, I was a bitch to pretty much everyone I came in contact with.
To put this in prespective, I was diagnosed on New Years Eve. I'd planned to go to a New Years party that night. When we got out of the doctor's office that day my Mum told me alcohol was probably not going to be very good for me, but that to make myself feel better I should go out and get drunk (to this day I'm not sure whether she was joking.) I'm not really a big drinker, so this was pretty unusual advice, but I took it and spent the New Years countdown drunk and crying in my friend's stairwell.
But. There is only so long you can be a bitch.
A little while back my supervisor at work was having problems with her knee. She said being in pain was making her grumpy and she didn't understand how, being in pain all the time, I wasn't a bitch all the time. The thing is, there's only so long people will forgive you for being a bitch. After that the being-in-pain excuse wears thin and you'll find you're not only in pain, but you also have no friends.
Of course, now I think I've taken it to the other extreme. I worry so much about being a burden on other people, being in other people's way or complaining too much, that I constantly apologise. Often I apologise when things aren't actually my fault, like if someone isn't looking and walks into me. I feel because I walk with a crutch surely it must be my fault somehow. The other day my friend pointed out to me that I often apologise when things aren't even a problem, like I sometimes apologise to people for standing next to them - I don't know why, I think it's a sickness.
My new solution to feeling I complain too much is to complain more but in a more obvious way. Instead of trying to hide the fact that I'm not happy I'm just going to yell out "I'M IN PAIN" and then just carry on as if I haven't said anything. My friend has also offered to complain for me at times when I get tired of complaining. That way is more fun than complaining about complaining, although saying "I'M TIRED OF COMPLAINING! MY VOICE IS SO WHINY, I CAN'T STAND IT!" would be funny too.
Little Miss Autoimmune
To put this in prespective, I was diagnosed on New Years Eve. I'd planned to go to a New Years party that night. When we got out of the doctor's office that day my Mum told me alcohol was probably not going to be very good for me, but that to make myself feel better I should go out and get drunk (to this day I'm not sure whether she was joking.) I'm not really a big drinker, so this was pretty unusual advice, but I took it and spent the New Years countdown drunk and crying in my friend's stairwell.
But. There is only so long you can be a bitch.
A little while back my supervisor at work was having problems with her knee. She said being in pain was making her grumpy and she didn't understand how, being in pain all the time, I wasn't a bitch all the time. The thing is, there's only so long people will forgive you for being a bitch. After that the being-in-pain excuse wears thin and you'll find you're not only in pain, but you also have no friends.
Of course, now I think I've taken it to the other extreme. I worry so much about being a burden on other people, being in other people's way or complaining too much, that I constantly apologise. Often I apologise when things aren't actually my fault, like if someone isn't looking and walks into me. I feel because I walk with a crutch surely it must be my fault somehow. The other day my friend pointed out to me that I often apologise when things aren't even a problem, like I sometimes apologise to people for standing next to them - I don't know why, I think it's a sickness.
My new solution to feeling I complain too much is to complain more but in a more obvious way. Instead of trying to hide the fact that I'm not happy I'm just going to yell out "I'M IN PAIN" and then just carry on as if I haven't said anything. My friend has also offered to complain for me at times when I get tired of complaining. That way is more fun than complaining about complaining, although saying "I'M TIRED OF COMPLAINING! MY VOICE IS SO WHINY, I CAN'T STAND IT!" would be funny too.
Little Miss Autoimmune
Tuesday, October 12, 2010
Useless
I had one of those ‘I am useless days today.’ Normally I’m pretty happy with what I manage to accomplish and try to take a strengths based approach to my life (looking at my skills and focusing on what I have achieved, rather than focusing on what I can’t.)
Every so often, though I have a useless day.
They always start out the same. I have one simple task to do, usually something that is going to be a little difficult for my joints, but is still totally doable. In this case, I had to make up the spare bed for my friend who’s coming to stay.
So, I make the bed. It’s a little bit of a struggle, but I do it and I’m so excited that I have accomplished something “difficult” that I’m like ‘yeah! I can totally do anything! I’m going to now change my bed and clean the bathroom and vacuum all the floors.’
I know what you’re thinking – that’s probably like just a normal weekend for most people, but when even one of these tasks causes you pain, this is a marathon.
I got as far as taking all the bedding off my bed - at which point, my arms hurt too much to pick the bedding up again. Basically at that point my solution to the problem was to just stand there in the middle of the pile of bedding feeling sorry of myself. Fortunately, this turned out to be a solution in itself. After a while, my Dad came to check on me, saw the sorry state I was in and decided to make my bed for me.
Now, the sensible thing to do at this point would have been to give up on the idea of vacuuming and cleaning the bathroom, but no, I continued on with my plan. The bathroom turned out to not really need cleaning, as it had been done a couple of days before, it was more just a case of tidying up, so I moved on to vacuuming.
The sensible thing to do would have been to pick out the rubbish on my floor before trying to vacuum, but I was pretty tired and felt like cutting corners.
I managed to vacuum up some receipts, a plastic bag and a pair of stockings I’d left on the floor. All of these were easy to retrieve, as they got stuck, but while “retrieving” them, I managed to vacuum up an ornament off my shelf. I was pretty upset about this, as it was something I’d bought at the Katherine Mansfield house when I first visited it, so I was pretty keen to get it back. Unfortunately, I didn’t know how to open the vacuum. My solution was to just press every button on it, which achieved NOTHING. At this point I decided to give and put the vacuum away. Of course at this moment, it decides to not only open, but the top completely came off. More worryingly, a small piece fell out and none of it would go back together.
I could totally NOT do anything. I decided to stick to my strengths and spent the rest of the evening watching TV and eating chocolate while my day fixed the vacuum.
Little Miss Autoimmune
Every so often, though I have a useless day.
They always start out the same. I have one simple task to do, usually something that is going to be a little difficult for my joints, but is still totally doable. In this case, I had to make up the spare bed for my friend who’s coming to stay.
So, I make the bed. It’s a little bit of a struggle, but I do it and I’m so excited that I have accomplished something “difficult” that I’m like ‘yeah! I can totally do anything! I’m going to now change my bed and clean the bathroom and vacuum all the floors.’
I know what you’re thinking – that’s probably like just a normal weekend for most people, but when even one of these tasks causes you pain, this is a marathon.
I got as far as taking all the bedding off my bed - at which point, my arms hurt too much to pick the bedding up again. Basically at that point my solution to the problem was to just stand there in the middle of the pile of bedding feeling sorry of myself. Fortunately, this turned out to be a solution in itself. After a while, my Dad came to check on me, saw the sorry state I was in and decided to make my bed for me.
Now, the sensible thing to do at this point would have been to give up on the idea of vacuuming and cleaning the bathroom, but no, I continued on with my plan. The bathroom turned out to not really need cleaning, as it had been done a couple of days before, it was more just a case of tidying up, so I moved on to vacuuming.
The sensible thing to do would have been to pick out the rubbish on my floor before trying to vacuum, but I was pretty tired and felt like cutting corners.
I managed to vacuum up some receipts, a plastic bag and a pair of stockings I’d left on the floor. All of these were easy to retrieve, as they got stuck, but while “retrieving” them, I managed to vacuum up an ornament off my shelf. I was pretty upset about this, as it was something I’d bought at the Katherine Mansfield house when I first visited it, so I was pretty keen to get it back. Unfortunately, I didn’t know how to open the vacuum. My solution was to just press every button on it, which achieved NOTHING. At this point I decided to give and put the vacuum away. Of course at this moment, it decides to not only open, but the top completely came off. More worryingly, a small piece fell out and none of it would go back together.
I could totally NOT do anything. I decided to stick to my strengths and spent the rest of the evening watching TV and eating chocolate while my day fixed the vacuum.
Little Miss Autoimmune
Monday, September 27, 2010
Big Orange Gloves
I decided a while back I would make Monday nights my blog posting day. It's worked pretty well, until tonight. I've just realised it's 9.30pm and I haven't even thought about a topic.
So I'm going to fall back on something that's been going around the New Zealand arthritis community this week. Having arthritis does not feel like wearing big orange gloves!
- For my non-New Zealand readers, this last week has been Arthritis New Zealand's appeal week. Arthritis New Zealand is a wonderful service. They've helped me so much with emotional and practical support. It's been really great over the past few years knowing that if I need help with anything, from advice on appropriate exercise programmes to getting subsidised taxi vouchers, I have someone I can call.
Unfortunately, the appeal adverts have not been so helpful.
They feature New Zealand celebrities trying to do everyday tasks while wearing big orange gloves. Everyone I've talked to agrees, arthritis does not feel like wearing big orange gloves.
For one thing, these ads have absolutely no mention of pain. Personally, I have almost full function of my hands, but that doesn't mean that they are not extremely painful. Yes, arthritis does sometimes make my hands fumbly. There are times when I can't do up zips or find using a knife and fork difficult but this is a minor irritation compared to the long list of other symptoms and difficulties that come with the disease. For me, things like, not being able to put my socks on myself, not being able to pick up things if I drop them, not being able to walk/get up and down from chairs un-aided would be more relevant. Then of course there is the pain and the things that go along with constantly being in pain. Lack of sleep, inability to concentrate, general exhaustion and floods of emotion.
Too many people already think that arthritis is just something you get in your hands. I do give the campaign credit for using younger celebrities. This at least hints at the fact that arthritis is not only a condition you get as you age.
I don't know if it's possible for a 30second ad to really explain what it is like to have arthritis. Even as I read over this post I'm thinking I haven't really captured it. For people who haven't experience long-term pain, it's probably quite difficult to imagine what it's like. I guess what I'd really like to see in an arthritis campaign is people with arthritis telling their stories. Maybe next year, Arthritis New Zealand can do some ads similar to the Like Minds ads (people with experience of mental illness telling their stories.) I know those ads have helped with people's understanding of mental illness. It's time for people's understanding of arthritis to change too.
Little Miss Autoimmune
Monday, September 20, 2010
Blobfish
So this week has not been a good one.
I had a really bad flare. I've had many psoriatic arthritis flares and many of them have been pretty horrible - LOTS of pain, not being able to walk, difficulty sleeping and even the simplest tasks becoming impossible. This was something different.
I spent most of the week on the couch. The fatigue hit me so bad. My muscles felt really heavy and I was so exhausted I had trouble breathing, let alone moving. My skin hurt so much that even the sensation of my clothes touching my skin was like being burnt and the muscle spasms, which are normally not a big deal, were so violent I nearly threw my laptop across the room when my leg jerked. Added to that, I developed a stutter for a couple of days - this was pretty difficult to deal with especially since I work on a mental health help line and I was rostered on that day. Needless to say I had to take some sick leave.
I wanted to come up with an analogy of what this flare felt like. The best I could do was: It's like running an all night marathon, while you have the flu and are really sunburnt (I think there should be something in there about being repeatedly punched too, but I couldn't fit it in without the desciption becoming rather rambly.)
Anyway, brain fog meant that I had some pretty interesting conversations with people. I either forgot what I was saying halfway through a sentence, or seemed to vocalise every thought that came into my head. On a good day, my conversations are kind of random, as the things I find most interesting are pretty weird, but this was a whole new level as I was verbalising all the weird things I think about as well.
Anyway, several times over the weekend I found myself describing a blobfish - I actually can't remember why, but it seemed really important at the time. My description went something like this "It's like a bowl of pudding - like if you put gelatin in milk." You'll see from the picture this is actually reasonably accurate.
What I realised later is once you've established what a blobfish looks like (preferably with a picture, not the pudding description) this is the perfect description of what a flare feels like. A flare feels like a blobfish looks.
So in future, if I'm having a flare and someone wants to know what it feels like, I will not start a list of symptoms, I will say 'go google a blobfish.' Then I will probably have to explain that this is not a more creative way of saying 'go get f*#ked' - 'cause I just realised that's kind of what it sounds like. Hmm... I think I'll have to work on the wording, but the idea is there.
Little Miss Autoimmune
Monday, September 13, 2010
Can I go to work flowchart
So the other day my supervisor asked me why I was at work when I wasn't well. I explained that when you have a chronic illness you have a new baseline of 'well' and 'not well.'
My thought process over 'can I go to work' goes something like this.
1) Am I in pain?
No - I haven't not been in pain for about 16 years, so my first point of call would be to check whether I have a pulse. If I don't and I'm dead, probably don't go to work. If I do, I'm still not in pain, and have established that I'm not paralysed or dreaming - don't go to work. A miracle has occurred - celebrate.
Yes - go to question 2
2) Is the pain so bad that I can't get out of bed/fall over as soon as I get out of bed?
Yes - don't go to work
No - go to question 3
3) Is the pain so bad that I can't walk/get stuck in a chair as soon as I sit down?
Yes - don't go to work
No - go to question 4
4) Am I so depressed about the pain that I am unable to concentrate/am constantly bursting into tears? ie am I going to be a distraction to others at work?
Yes - decide whether I can get this under control i.e. will a nice relaxing couple of hours, perhaps filled with chocolate, a walk and a bath possibly make me feel better? If no, don't go to work, if yes, try these things then reassess.
No - go to question 5
5) Am I any kind of contagious sick?
Yes - don't go to work, my work mates will not appreciate me spreading my bugs.
No - go to question 6
6) Am I some kind of sick that is not pain and not contagious? ie nauseous from medication, ulcers, dizzyness or general out of sorts-ness.
Yes - Is this a long term or short term thing? If short term, it's probably OK to miss a couple of days work, if long term, I'm going to at some point have to go to work with it. Decide whether this will be a distraction to other people/will other people end up having to look after me - if so don't go to work.
No - Go to work
This thought process sometimes changes when things I haven't thought of pop up and I have to factor them in to my decision making process and of course, this is only my physical wellness can I go to work flowchart. I have a whole other one for my mental health.
So basically, it's not as simple as 'am I well/am I sick?' There are so many degrees that sometimes I don't judge it right. Sometimes I will go to work and feel absolutely awful and have to go home. Other times I will stay home and later realise, maybe I would have been OK at work.
I'm really lucky that I have a supportive work who understand this.
The important thing is, only I can make this decision. The best way is to trust myself, and trust my instincts.
Little Miss Autoimmune
My thought process over 'can I go to work' goes something like this.
1) Am I in pain?
No - I haven't not been in pain for about 16 years, so my first point of call would be to check whether I have a pulse. If I don't and I'm dead, probably don't go to work. If I do, I'm still not in pain, and have established that I'm not paralysed or dreaming - don't go to work. A miracle has occurred - celebrate.
Yes - go to question 2
2) Is the pain so bad that I can't get out of bed/fall over as soon as I get out of bed?
Yes - don't go to work
No - go to question 3
3) Is the pain so bad that I can't walk/get stuck in a chair as soon as I sit down?
Yes - don't go to work
No - go to question 4
4) Am I so depressed about the pain that I am unable to concentrate/am constantly bursting into tears? ie am I going to be a distraction to others at work?
Yes - decide whether I can get this under control i.e. will a nice relaxing couple of hours, perhaps filled with chocolate, a walk and a bath possibly make me feel better? If no, don't go to work, if yes, try these things then reassess.
No - go to question 5
5) Am I any kind of contagious sick?
Yes - don't go to work, my work mates will not appreciate me spreading my bugs.
No - go to question 6
6) Am I some kind of sick that is not pain and not contagious? ie nauseous from medication, ulcers, dizzyness or general out of sorts-ness.
Yes - Is this a long term or short term thing? If short term, it's probably OK to miss a couple of days work, if long term, I'm going to at some point have to go to work with it. Decide whether this will be a distraction to other people/will other people end up having to look after me - if so don't go to work.
No - Go to work
This thought process sometimes changes when things I haven't thought of pop up and I have to factor them in to my decision making process and of course, this is only my physical wellness can I go to work flowchart. I have a whole other one for my mental health.
So basically, it's not as simple as 'am I well/am I sick?' There are so many degrees that sometimes I don't judge it right. Sometimes I will go to work and feel absolutely awful and have to go home. Other times I will stay home and later realise, maybe I would have been OK at work.
I'm really lucky that I have a supportive work who understand this.
The important thing is, only I can make this decision. The best way is to trust myself, and trust my instincts.
Little Miss Autoimmune
Monday, September 6, 2010
Meltdown Spaces
So, I have an idea for a new kind of business. I used the term business pretty loosely as I have no clue how you could actually make money from this idea, but I'm sure that can all be worked out later.
Have you ever noticed that when you're having a really bad day, and you get to absolute meltdown point, there is nowhere you can go and have your meltdown other your own home? I discovered this the other day. Things were not going well, I was in a lot of pain, really tired and sick and I had like a million (read three) things to do. All I really wanted to do was go home, go to bed and eat masses of chocolate. Instead I found myself limping down Courtenay Place on my way to get a blood test. On a good day I'm not that keen on blood tests so on a bad day it just put me over the edge.
I burst into tears on my way out of the building. There was no where I could go to cry in private other than Reading Courtenay bathrooms, which are by no means an ideal meltdown space. The stalls are pretty claustrophobia, and since there were other people in the bathroom, I was forced to have a very quiet meltdown, which is just not as cathartic as a noisy one.
I've heard from other people that they've had similar experinces, having meltdowns in banks, the middle of the street etc. They've all said they would all like a nice, comfortable, private place to go and cry where no one would judge you, or try to make you feel better (preferably with copious amounts of chocolate and tissues available.)
So this is my idea: I set up a chain of "Meltdown Spaces." I'm thinking I may petition John Key for some funding. He's clearly overlooked this vitial need in our community.
If I can figure out how to do it, I'm going to attach a video of some people who clearly needed a Meltdown Space. Also, the song on this video is by Rob Thomas who's wife Marisol has an autoimmune disorder. He wrote the songs "Her Diamonds" and "Ever the Same" about her experiences with it... OK, so it seems I don't know how to attach the actual video, but here's the link to it on YouTube.
http://www.youtube.com/watch?v=crKS_fMTRJo
It's my absolute favourite video.
Little Miss Autoimmune
Have you ever noticed that when you're having a really bad day, and you get to absolute meltdown point, there is nowhere you can go and have your meltdown other your own home? I discovered this the other day. Things were not going well, I was in a lot of pain, really tired and sick and I had like a million (read three) things to do. All I really wanted to do was go home, go to bed and eat masses of chocolate. Instead I found myself limping down Courtenay Place on my way to get a blood test. On a good day I'm not that keen on blood tests so on a bad day it just put me over the edge.
I burst into tears on my way out of the building. There was no where I could go to cry in private other than Reading Courtenay bathrooms, which are by no means an ideal meltdown space. The stalls are pretty claustrophobia, and since there were other people in the bathroom, I was forced to have a very quiet meltdown, which is just not as cathartic as a noisy one.
I've heard from other people that they've had similar experinces, having meltdowns in banks, the middle of the street etc. They've all said they would all like a nice, comfortable, private place to go and cry where no one would judge you, or try to make you feel better (preferably with copious amounts of chocolate and tissues available.)
So this is my idea: I set up a chain of "Meltdown Spaces." I'm thinking I may petition John Key for some funding. He's clearly overlooked this vitial need in our community.
If I can figure out how to do it, I'm going to attach a video of some people who clearly needed a Meltdown Space. Also, the song on this video is by Rob Thomas who's wife Marisol has an autoimmune disorder. He wrote the songs "Her Diamonds" and "Ever the Same" about her experiences with it... OK, so it seems I don't know how to attach the actual video, but here's the link to it on YouTube.
http://www.youtube.com/watch?v=crKS_fMTRJo
It's my absolute favourite video.
Little Miss Autoimmune
Wednesday, June 30, 2010
Laughter is the best Medicine
I am not fine. I am flaring really badly and I feel awful. For the last few days I’ve been sleeping pretty much ‘round the clock, sometimes on the floor because it felt more comfortable than my bed. I’m back to the stage where I’m having falls ‘cause the joints in my legs won’t support me so in general, I am not fine!
Rather than going on about how not fine I am, I thought I’d follow my friend Mary’s suggestion and do a post of random stuff that has very little to do with autoimmune disorders and loosely connect it under the guise of ‘laughter is the best medicine.’
Mainly this is just going to be some lists of things that I think are funny. You may or may not find them funny also.
Weirdest Compliments I’ve Received
“You have eyes the colour of blue M&M’s”
From: A girl at school.
My reaction: I think I laughed at the time. Now every time I look at M&M’s I think of eyeballs.
“I like your necklace and I like your bust.”
From: A friend of a friend who I was having dinner with.
My reaction: At first I thought I’d misheard her, then I thought maybe it was a lost in translation situation as English was her second language, but no, that is what she meant. She went on to tell me why she liked my bust and that she wished she had a bust like mine. At that point I wished I had worn a less revealing top. I also think it’s funny that she tacked “I like your necklace” on the front of that.
“You look like the Virgin Mary”
From: Random drunk guy.
My reaction: To be fair, I was handing out promotional stuff for a Fringe play that had a picture of the Virgin Mary on it and he was really drunk, so I suppose it wasn’t that weird…
“I like your dancer’s calf muscles.”
From: Guy in my class at drama school
My reaction: What strikes me as weirdest about this, is I can’t remember why he was holding my calf muscle in the first place. I suspect it was some weird drama game that I’ve blocked out. Anyway, he decided I had the calf muscles of a dancer. It’s a pity that’s about all I’ve got of a dancer in me.
Misheard Song Lyrics
Song: Matchbox 20, ‘Disease’
Real lyric: ‘All my life, oh, was magic’
What I hear: ‘All my life the phone was magic’
Thoughts: I made up this whole story in my head about how he’d always loved talking on the phone to this girl until they broke up and had lots of arguments over it. I thought it was some kind of phone phobia reference. Clearly I have an active imagination.
Song: Eskimo Joe, ‘Black fingernails, red wine.’
Real lyric: ‘All of us stand and point our fingers’
What I hear: ‘I don’t understand the point of fingers.’
Thoughts: It amuses me greatly that I thought this made sense. Personally I think my version is more interesting.
Song: Bush, ‘Little things’
Real lyric: ‘It’s the little things that kill, tearing at my brain again.’
What I hear: ‘It’s the little pink pill, tearing at my brain again.’
Thoughts: I really thought this song was about antidepressants. It kind of disappoints me that it’s not.
Song: Alanis Morisette, ‘Princes Familiar’
Real lyric: ‘Please be philosophical’
What I hear: ‘Please be ever so fickle’
Song: Alanis Morisette, ‘8 easy steps.’
Real lyric: ‘I’ll show you how leadership looks, when taught by the best.’
What I hear: ‘I’ll show you how widdershins looks when taught by the best.’
Thoughts: I put these both down to the fact that Alanis takes forever to get a syllable out. It did intrigue me as to how you could teach widdershins as I’m pretty sure it means anticlockwise.
Weirdest thing I've found I’d written in my beside the bed notebook
"He smiled, exposing wisdom and teeth."
I’m pretty sure I thought that was brilliant at 3 in the morning. Not so much when I read it again when I woke up.
OK, so that one is not really a list but I thought this post was getting a bit long.
Check out Mary’s blog for her lists:
http://jumpinginpuddles89.blogspot.com/
Yay! Shameless friend promotion!
Anyway, hopefully I'll be inspired to write something more autoimmune related soon.
Little Miss Autoimmune
Rather than going on about how not fine I am, I thought I’d follow my friend Mary’s suggestion and do a post of random stuff that has very little to do with autoimmune disorders and loosely connect it under the guise of ‘laughter is the best medicine.’
Mainly this is just going to be some lists of things that I think are funny. You may or may not find them funny also.
Weirdest Compliments I’ve Received
“You have eyes the colour of blue M&M’s”
From: A girl at school.
My reaction: I think I laughed at the time. Now every time I look at M&M’s I think of eyeballs.
“I like your necklace and I like your bust.”
From: A friend of a friend who I was having dinner with.
My reaction: At first I thought I’d misheard her, then I thought maybe it was a lost in translation situation as English was her second language, but no, that is what she meant. She went on to tell me why she liked my bust and that she wished she had a bust like mine. At that point I wished I had worn a less revealing top. I also think it’s funny that she tacked “I like your necklace” on the front of that.
“You look like the Virgin Mary”
From: Random drunk guy.
My reaction: To be fair, I was handing out promotional stuff for a Fringe play that had a picture of the Virgin Mary on it and he was really drunk, so I suppose it wasn’t that weird…
“I like your dancer’s calf muscles.”
From: Guy in my class at drama school
My reaction: What strikes me as weirdest about this, is I can’t remember why he was holding my calf muscle in the first place. I suspect it was some weird drama game that I’ve blocked out. Anyway, he decided I had the calf muscles of a dancer. It’s a pity that’s about all I’ve got of a dancer in me.
Misheard Song Lyrics
Song: Matchbox 20, ‘Disease’
Real lyric: ‘All my life, oh, was magic’
What I hear: ‘All my life the phone was magic’
Thoughts: I made up this whole story in my head about how he’d always loved talking on the phone to this girl until they broke up and had lots of arguments over it. I thought it was some kind of phone phobia reference. Clearly I have an active imagination.
Song: Eskimo Joe, ‘Black fingernails, red wine.’
Real lyric: ‘All of us stand and point our fingers’
What I hear: ‘I don’t understand the point of fingers.’
Thoughts: It amuses me greatly that I thought this made sense. Personally I think my version is more interesting.
Song: Bush, ‘Little things’
Real lyric: ‘It’s the little things that kill, tearing at my brain again.’
What I hear: ‘It’s the little pink pill, tearing at my brain again.’
Thoughts: I really thought this song was about antidepressants. It kind of disappoints me that it’s not.
Song: Alanis Morisette, ‘Princes Familiar’
Real lyric: ‘Please be philosophical’
What I hear: ‘Please be ever so fickle’
Song: Alanis Morisette, ‘8 easy steps.’
Real lyric: ‘I’ll show you how leadership looks, when taught by the best.’
What I hear: ‘I’ll show you how widdershins looks when taught by the best.’
Thoughts: I put these both down to the fact that Alanis takes forever to get a syllable out. It did intrigue me as to how you could teach widdershins as I’m pretty sure it means anticlockwise.
Weirdest thing I've found I’d written in my beside the bed notebook
"He smiled, exposing wisdom and teeth."
I’m pretty sure I thought that was brilliant at 3 in the morning. Not so much when I read it again when I woke up.
OK, so that one is not really a list but I thought this post was getting a bit long.
Check out Mary’s blog for her lists:
http://jumpinginpuddles89.blogspot.com/
Yay! Shameless friend promotion!
Anyway, hopefully I'll be inspired to write something more autoimmune related soon.
Little Miss Autoimmune
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