Tuesday, April 8, 2014

Flares, Fears and The Future

Life has been... too much recently. Too fantastic. Too overwhelming. Too awful. Too scary. Just too much.

I've had some really awesome things happen lately. Things that made me feel really good, and really proud of myself. I've met new people and had some great opportunities come my way, and for the first time in... well possibly forever... I've felt like yes, I know what I'm doing. Not only that, I'm good at what I'm doing. I've really liked myself, and felt happy. Not happy but... or liked myself except for... 

But the thing is, all of the big opportunities and good things happened at the same time. Which meant I was pushing myself to keep up with them all. Which was fine - good actually, because in a way that made me feel even more awesome. "Look at me go!" I was thinking. "No disease is going to hold me back!" And it truly wasn't. Though even before things got busy, my body had been telling me things weren't right. I had one week where I kept falling asleep in accidental naps every time I sat down. I pretty much lost an entire day at one point. 

And then all the deadlines etc. fell at around the same time, and true to form I didn't flare in the middle of the stress, because the adrenaline was carrying me through. I wasn't having accidental naps anymore, but now I wasn't getting enough sleep either. Pain, not being able to relax, and a few other symptoms were keeping me up all night. 

Naturally, I flared the minute the stress stopped. The day I handed in my play, my arms doubled in size with soft-tissue inflammation. By the evening, my joints had joined the party, and I could barely open my mouth as the side of my face had formed a lump where my jaw joint was swollen, and my other joints especially my spine were screaming in pain. Then the muscle spasms and tremors kicked off, and I found myself teaching a class, but not able to get up from the chair I was sitting in.

But I was still happy. I was still pleased with all the good things, and the fact that I was coping so well with the bad ones. It was terrifying when I realised I couldn't stand up, but I kept calm, came up with a plan for what to do about it and successfully put it into action. Even though I was getting sicker by the day, I was managing to keep on top of everything. 

When you're chronically ill, you're so often told to be grateful, and it's so annoying when other people say it. It's said as if it's something comforting, but all it does is make you feel guilty for feeling bad. When it comes from inside you, though, and not from someone else putting it on you, it can actually help. I was so thankful for the amazing things and people in my life - so I couldn't eat solid food? Look at how many yummy things I could turn into soup or smoothies, and really just having food at all is something to be thankful for isn't it? So I couldn't walk? I had amazing people willing to give me lifts places, or offer me advice and company on facebook. So I was in a sh**load of pain? How lucky was I to have had my joints be in remission for the last couple of years! This level of pain used to be my life all the time. And who could forget that the only reason I was flaring in the first place was that I'd just had a whole load of awesome things happen? I had nothing to complain about.

Then 4am on the Friday morning, I woke up in a lot of pain. When I sat up, I started vomiting, then fainted, and it kind of went downhill from there. Basically every time I was upright, I passed out, then vomited when I woke up - usually all over myself. In the morning proper, my dad took me to the doctor, but it was a real struggle for me to stay conscious long enough to get to the car, then when we got to the doctor's I collapsed in the parking lot and had to be wheeled inside, where I proceeded to vomit and pass out some more. I couldn't even keep water down, which meant I was dehydrated and my pee looked like a cup full of Fanta.

Believe it or not, I still felt happy. There were points, where I was screaming inside my head "This has to stop! I can’t do this anymore!" and I did start to cry because I felt so bad about vomiting all over the floor (and possibly one of the nurses) But I still felt really grateful for everyone taking care of me, and for how nice they were being. I was thankful I’d made it through all the deadlines before this happened, and everyone was assuring me I would be feeling a lot better soon. I was. They gave me a shot of steroids, and the wonderful thing about steroids is that though they have harsh side-effects, they work well, and they work fast.

So, with my newly-mostly-behaving steroid-filled body, I carried on. There were no more deadlines, so I wasn't pushing myself so hard. A good thing since I'd managed to pull several muscles during my escapades. I was already planning the next projects, but I didn't feel quite so good anymore. I started to feel unsure of myself, and even the simplest decisions like "do I want to talk to somebody on the phone tonight" felt too hard, and motivating myself to do anything was difficult. The things I had been looking forward to, didn't feel quite so exciting anymore.

For a while, I thought that I was feeling that way because I was actually unsure of the things I had coming up. But then I realised it had nothing to do with anything in the future. A lot had just happened, good and bad, and I hadn't had time for my mind to catch up. This wasn't a Pollyanna-type situation - I wasn’t forcing myself to feel positive, happy, or grateful, that's just, for whatever reason, what I was feeling. I kind of suspect I hadn’t really connected fully to what was happening, and had been living in a sort of pleasant denial. Then the reality of how sick I'd just been caught up with me. I remembered that no matter how well I manage things, I have a serious illness. While most of the time that's going to be difficult but do-able, sometimes it is just going to be scary and awful and there's no getting away from it.

I wrote the above about a week ago, along with several other posts which I’ve decided are too personal to post. The gist of them was basically that I ended up in quite a dark place for a while. I saw my doctor yesterday and she said it’s normal to feel depressed after a big health set-back. I felt like I was losing control of my body and it was hard for me to feel calm and positive about that, because it wasn’t an irrational thought. I did lose control of my body. My fears about the future, and the possibility of my diseases progressing were all brought to the surface, and it was hard to reassure myself when I knew that all of the things I was afraid of could easily become a reality. My doctor also pointed out that I’ve had some bad reactions to steroids in the past, and it’s likely they were influencing my mood. It’s also likely that my hormones were a bit out of whack and my Vitamin D dose was due.

The good thing was I recognised my thoughts were becoming a bit dire, and I sought help. I’m lucky enough to have friends and family who were able to be there for me, in person, over the phone, on facebook, and in some cases without even actually doing anything. Just in knowing that I could contact them and they would understand helped me. I’m still not back to myself, but I am feeling better, and my doctor is arranging for me to see a counsellor to talk through some of the fears this has brought up. I’ve been a little reluctant to talk through these issues in the past, as I’ve noticed many people’s automatic response is to try and reassure me that the things I'm afraid of won’t happen. This isn’t helpful, because it’s just not true. The things I'm afraid of may or may not happen, and I’m by no means saying I definitely think they will, but assuring me they definitely won’t is just an empty promise. What I need help with is not dwelling on those fears, not deluding myself into thinking nothing bad will ever happen to me.

Right now I am (mostly) in control of my body. I am functioning, and living a pretty good life. I don’t want to miss all the awesome things my present has to offer, just because I’m too focused on what the future may or may not hold. 

Thanks for reading,
Little Miss Autoimmune

Wednesday, March 19, 2014

Capable with a side of limitations

"J Hook" in Action
When I was asked to write a post on the topic of “A Day in the Life of an Autoimmune Arthritis Patient”, I have to admit my mind went a little blank. I didn’t want to write about a really bad day, because when I talk about the bad stuff, people often get the wrong idea. They expect me to be completely bed-ridden, or at least much worse than I am, so when they see me they find it hard to reconcile their mental picture with the one they see in front of them. But I didn’t want to document in detail a good day either, because that would give the wrong picture too, and it would then make it harder to explain to people why I can’t do certain things on certain days. 
The truth is, there is no typical day for me. I can be fine one day, and really not the next. But there are a lot of things I do every day – good or bad – that healthy people probably don’t. Every day I have to plan, pace and prioritise tasks, so that I can make sure I can meet all my responsibilities without letting anyone down or making myself ill, but Christine Miserandino’s Spoon Theory can explain that better than I ever could. Overall, there are a lot of choices I have make, that healthy people probably don’t and there are also a lot of tasks that I adapt to make easier, mostly without even thinking about it.

I think the fact that I do these things automatically, means that most people don’t even realise I’m doing them. It’s kind of like a duck swimming, peddling frantically underwater, while keeping up the serene, gliding appearance on the surface. I don’t think anyone would ever describe me as “serene” or “gliding” but I probably do manage to appear more capable and independent because I employ a whole lot of “cheats” to situations behind the scenes. 
This is by no means a comprehensive list, but here are some of the “cheats” I use to make my days both easier and more productive

·         I consider an electric can opener and electric mixer kitchen essentials, not luxuries, and I also use specialty tools like a jar opener and J Hook*. I don’t bother to try opening bananas, jars, tins, or plastic bags the normal way anymore. Plastic bags and jars can be opened with the help of a pair of scissors (to break the seals on the jar) then bracing the jar against your body, and a banana is most easily opened by cutting part way through with a knife.
·         I stand with my back against “push” doors, and shuffle backwards to open them, and I open “pull” doors a little way with my hand, then use my knee or elbow for more leverage to get them properly open. Apart from my front door, I don’t ever shut the doors in my apartment fully, so don’t have to turn the doorknobs to get them open. I also use my elbows and knees to close cupboards, drawers, and the oven door.
·         I cook big meals, so that I only have to cook once a week and have a supply of left overs for when I don’t feel well enough to cook, or just don’t have the “spoons” at the end of the day.
·         During applause situations, I clap my “good” right hand against my left forearm, because my left hand and wrist can’t do clapping.
·         I use voice recognition software for typing when it hurts too much, and I switch the buttons on my mouse over every so often, so I’m not over-using the same joints.
·         I keep on office “wheely” chair in my living room, which I use as an improvised wheelchair to get to my bedroom if my leg gives out before bedtime. Tip: if you ever have to do this it’s easier to sit on it and push yourself backwards with your feet, rather than trying to make it go forwards.
·         I use water bottles, or mugs with a large handle, rather than glasses which require a proper grip.
·         I always buy hand bags with an across-the-body strap, so I don’t have to carry them in my hands. When I do have to carry things, I tuck them under my arm, or loop the handles of shopping bags over my forearm.
·         I only ever buy pre-grated cheese, and pre-crushed garlic. They're just going to go mouldy waiting for me to use them otherwise. 
·         At night, I often fall going to or coming back from the bathroom. I used to fall right next to my bed, which was incredibly demoralising. I could tell, even in the dark that I was so close to it, but wouldn’t be able to pull myself up. So my cheat for this: if I’m past a certain point in my room and I start to fall, I don’t try to stop it but just propel the fall forward as much as I can. If I’m lucky, I land face down on the bed, and then I laugh about it a lot. If I’m not so lucky, I land on my knees next to the bed, but that’s still easier to pull myself up from.
·         I listen to music while doing a lot of tasks, because I find distraction is one of the best forms of natural pain relief, and I can cope better if I manage to keep my mind off the pain for longer.
·         I always aim to leave the house 25-30 minutes before my bus goes. On an average day, the walk takes 16 minutes, and on a really good day it can take less than that. But I have to prepare for the fact that until I start walking, I can’t tell for sure what type of day it is. This way, I don’t miss the bus, even if it turns out to be a really bad day, and if it happens to be an especially good day, there will probably be an earlier bus I can catch anyway.
·         I usually eat soup or smoothies for lunch, so my poor jaw joint gets a rest from having to chew too much.
·         I know where the lifts are in most public buildings. If there aren’t lifts, I make everyone go ahead of me on the stairs so that I can go as slow as I’d like to. Every so often there will be someone trying to be helpful, who will insist they don’t mind waiting. I’ve learnt to stand my ground, and make them go first, because no matter how much they don’t mind, I will still feel compelled to force myself to walk faster in order not to hold them up.
·         I use Molly Stick even on good days, just in case things go bad suddenly. This happens a lot, but Molly Stick means I can still get myself home or to a taxi safely.
·         When I stop at street crossings, I take the weight completely off one of my feet to give the joints on that side of my body a rest.
·         I wear wrist splints at night to stop the pain getting really bad while I sleep, even if my wrists don’t hurt when I go to bed. This gives me a better shot at a good night’s sleep, and functioning hands in the morning.
·         If I’m standing talking to someone, and I start to feel dizzy, I scrunch my toes up to try stop myself passing out. If it seems like my leg is about to give out while I’m teaching, I press my palm hard flat against the desk, and shift my weight on to the other leg. I can do this without alerting anyone to there being something wrong, and while still concentrating on what they’re saying.

This was supposed to be a short list, but the more I wrote, the more things I thought of. There are many, many more, but I think this is enough to give you an idea of the kind of things an autoimmune arthritis patient might do in their day, just to make it through.

Thanks for reading,
Little Miss Autoimmune

* a tool for opening pull tabs, found in disability supply shops.

Saturday, February 22, 2014

Living in Bucket List Mode

Don't be alarmed by the title - I'm not dying, or at least not any faster than the usual!

Some stuff has been happening with my health, and I haven't posted about it for a couple of reasons. One because it's still all in the stage of "this will probably all turn out to be nothing" with only a slight possibility of it turning out to be "something", and two because as is just about always the way in life, ALL OF THE THINGS both good and bad happen at the same time, and finding the time and spoons to sit down and write a blog post becomes of low priority.

In the past when things have gotten bad with my health, I've tended to feel quite closed off towards new things or people. I never want to take on something new, or start a new friendship, if there's a chance that I will end up having to abandon it and letting people down. But as I say, when my health is at it's worst, that's when the good things tend to happen as well. New ideas, opportunities, or people appear in your life, right at a time when you're not sure if you're well enough to fully commit to, or appreciate, them.

In the past few months, I've had some really cool work and writing opportunities present themselves in my life, and this time around I've felt a lot more open about exploring them. This is in part because I've been thinking a lot about bucket lists lately. Not just for things I want to do before I die, but for things I want to do before I lose the ability to do them. I've come to accept the fact that my diseases may well progress. This may mean that I lose functions, or find things a lot harder to do than I do now. I'm already seeing this. As my joint symptoms have become active again, I'm finding it more and more difficult to do tasks that were easy a few months ago. But they're not impossible yet, so I'm keen to keep experiencing all life has to offer while it stays that way. I'm living in Bucket List Mode.

I'm also more open to exploring opportunities now, because I know myself well enough to be confident that I will do everything possible to avoid letting other people down. My doctor told me the other day that she thinks I've always been very honorable in the way I handle my diseases in relation to other people. I hadn't really thought of it like that before, but she's right: when I take something on, I do what I can to see it through, even if I do become really unwell during the process. And if it gets to the point where it's absolutely not possible for me to continue, I do my best to lessen the impact of that on other people. So even if this does turn out to be "something" I can still feel reasonably confident that I won't end up letting anyone down by taking these new things on.

So here's the deal with my health at the moment. A few weeks ago, I had an odd episode where out of nowhere I experienced a sudden-onset, blinding headache, and started vomiting - hugely bad timing, as I was away for a hens weekend at the time. As a non-drinker, I didn't think I would ever find myself vomiting uncontrollably while dressed in a Big Fat Gypsy Wedding costume and tiara, but there I was. I guess in a weird way that's a life-experience to cross off the list! I assumed at the time that it was down to my wonky-donky blood pressure, or perhaps just the heat. But over the next week I began to experience some other weird and slightly alarming symptoms. I struggled to hold a conversation, as I couldn't find words or forgot what I was saying. I was having trouble reading and writing, and couldn't work my computer. Most confusing, I managed to get on completely the wrong bus, despite always catching the same one. I wasn't all that worried until people kept starting sentences with: "Now don't worry, but..." (there's nothing that tells you there's something to worry about, more than people telling you not to worry!) so I made a doctor's appointment.

By the time I got in to see my GP, things had improved, and I was more or less back to normal. It's quite likely that we won't ever know what caused this episode. My GP said it could be down to my blood pressure, as I'd thought, though it was normal at the appointment, or perhaps an atypical migraine, though the headache was bi-lateral. The slightly more concerning possibility she raised was of it being Cerebral Lupus (inflammation in the brain, caused by SLE.) She said she has another SLE patient the same around the same age as me, who's experiencing very similar symptoms, though her's have been reoccurring episodes whereas this was a first for me. She also gave me the "now don't worry, but..." speech, so I know that this possibility is not exactly ideal. The plan of action is for me to have an MRI at some point, to see if we can figure out what's happening. Unfortunately my insurance will cover an MRI but only if I'm referred by a specialist not my GP (yep, we have insurance issues in NZ too!) and the public system will take a really long time.

So for now I don't really know. I'm honestly not really that worried, in fact I'm more concerned about the idea of actually having the MRI than of any possible negative results. I don't really think it's going to show anything. I strongly suspect these symptoms will remain a mystery, but even if it does turn out to be something I'll cope with it. In the meantime, I'm cramming in all the good bucket-listy things, because either way, there's a lot of them to fit in.

Thanks for reading,
Little Miss Autoimmune

Sunday, February 9, 2014

The Vampire's Cousin

Stitches ready to come out post-biopsy
For me one of the most inconvenient symptoms of SLE is being photosensitive. If I’m in direct sunlight for too long, I come out in large wheals and often flare very badly afterwards. Added to that, the medications used to treat SLE actually increase this sun-sensitivity, and also increase the risk of developing skin cancer. Not so great when we already have such a high rate of melanoma in New Zealand from the hole in the ozone! There’s only really one way to deal with it – avoid being in the sun as much as possible, and slip, slop, slap and wrap when you can’t avoid it. 

You may remember last year I had a biopsy done on a rash on my neck. At the time, my dermatologist thought it may be one of the autoimmune forms of folliculitis, but in December I got the biopsy results back from my GP, and it didn’t show folliculitis but instead showed that the sun sensitivity was likely getting worse. It also probably wasn’t helping that I’d been getting a bit lax about covering up.  

It was really weird timing, as I’d just finished reading What We Saw in the Dark – a novel about three teenagers living with Xeroderma pigmentosum (a rare genetic disorder, in which the ability to repair damage from UV light is deficient) who spend their entire lives living at night, trapped inside during daylight hours. I’d also just met another lupus patient, whose skin, head to toe, had suffered permanent visible damage from sunlight. So all in all, I didn’t feel too sorry myself, as the universe seemed to be spelling it out to me that it really could be so much worse. It was also a bit of a reminder that I do need to take this more seriously, as I want to try and avoid the kind of skin damage this other woman had experienced. 

I’ve been being a lot more careful about not leaving my skin exposed when I’m outside since, which has led to a few “interesting” outfits recently. I did, however, get the best compliment the other day when I attended a friend’s outdoor wedding and she exclaimed “Wow, you’ve actually managed to look normal!” so I think I’m starting to get the hang of it now.

I’ve noticed, that if the subject comes up – which it does when people wonder why I’m piling on on long sleeves, scarfs and hats in summer – I seem to be answering the same questions over and over. I don’t really mind that, but at the same time, I thought it might be easier to set up a sort of FQA on the subject.

What happens if you go in sunlight?
I get Uticaria, which is basically a fancy word for hives. These come up as big painful, itchy wheals and blisters. They then turn into an eczema-type rash, which often then gets infected or ulcerates. Nasty generalised SLE flares usually follow. I also get sunburnt a lot quicker than normal, and have a high risk of skin cancer

So… if you go in sunlight, will you like die?
No, I’m not actually a vampire. More like a vampire’s distant relative.

Aren’t there things in sunlight that humans need?
Yes, the main one being Vitamin D. Having low Vitamin D levels can have an effect on mood, energy levels, and can cause a whole host of health problems. There are some food sources of vitamin D, such as mushrooms and fortified dairy products, but from what I understand if you’re not getting enough from sunlight for whatever reason, it’s best to get it from a supplement. I take vitamin D tablets twice a month, and feel a lot better for it.

Don’t you get hot, being covered up all the time in summer?
Yes, but the reality is it’s a choice between covering up and dealing with the heat, or not going outside at all. I try to arrange things so I can stay inside during the middle of the day, but sometimes I can’t, and covering up with clothing and 50+ SPF is the only way around it. Sometimes this means that I won’t come to events that are held outside, or I may be a bit antisocial at barbeques etc. and sit inside by myself.     

Doesn’t that thick sunscreen mess with your skin?
Let’s just say I’m not going to be doing any cover girl ads anytime soon. This is one of the big reasons I wear a lot of clothing, because it cuts down on the amount of sunscreen I have to use, though in some situations I do have to use sunscreen under my clothing as well.

But don’t you ever just want to sit in the sun?
Personally, sunbathing was never something I particularly enjoyed before I got sick, so this isn’t really something I feel I’m missing out on. I get why this would be a big deal for some people though. Unfortunately, the reality is that when you’re living with chronic illness, there are sometimes going to be things that you want to do, but can’t and you just have to find a way to be okay with that.

Thanks for Reading,
Little Miss Autoimmune

Wednesday, January 15, 2014

Opportunities Don't Always Knock

Arm-Knitted Scarf
I started out trying to write a blog post entitled “Things I learnt in 2013” but I found that everything I wrote was coming out simultaneously too personal and too vague, too negative and too flippant, too preachy yet too much like I didn’t have a clue what I was talking about either. So I decided to change tack and just talk about one thing in particular.

Yesterday I held an arm-knitting lesson for some of my friends. This was a culmination of several opportunities I’d been given last year, which might have been very easy for me to miss or walk away from because I was too unsure of myself to follow up on them. Last year, I learnt how to arm knit after seeing a picture of somebody doing it. Initially I dismissed the idea of trying to learn, as I thought my hands would be too bung for it. But the idea stuck with me, and after a bit of persistence, I found I could adapt and improve on the original techniques, and had soon mastered this new skill. A couple of months later, I was interviewing to take over tutoring the Writing for Children class at the Wellington High School Community Education Centre, and the subject of knitting came up. I mentioned the arm knitting, and was offered the opportunity to create a class in that too. 

I’m not great at asking people for help. I mean, I am for the big things. Like the “I am on the floor and cannot get myself up without assistance” or the “I need you to take me to the hospital now” type things, but the day to day stuff, the things where it would be nice to have help but it’s not 100% necessary, I sometimes find harder to ask for. As I’m writing this, I realise probably the reason I find this harder is because of those big things. It feels like too much to ask for the other stuff, when the people in my life help me out so much already.

But last year I learnt that family, friends, and even complete strangers, are often very willing to help you out, but they don’t want to seem intrusive. Sometimes they’re just waiting to you to ask. To give them the opportunity to help. This was really driven home to me when I was shown incredible kindness by a complete stranger, who then thanked me for letting her help me, then again when I asked a family friend if she could give me a lift to a doctor's appointment and she responded “Thank goodness, finally you’re letting me do something for you!”

Anyway, when I told friends about the arm-knitting classes I was going to be teaching some of them were really interested in the idea, especially when they saw the scarf I’d made (pictured above.) I was a little nervous about the idea of teaching it for the first time though, and one of my friends suggested getting a group of people to come around for a practise lesson. 

For a while, I felt just as nervous about asking people to come and be my guinea-pig students. What if they didn’t want to come but felt obligated? This very much fell into the category of something that would be nice to have help with, but it wasn’t anywhere near 100% necessary. In the end I decided that if people didn’t want to come, they were perfectly capable of saying no, just as I’m quite capable of saying “no thanks” to things I’m not so keen on doing. Another thing I learned in 2013 was that being honest with people, even when you think it might be something they don’t want to hear, is an opportunity for both of you to communicate more effectively!

Arm Knitting in Progress

In the end, the lesson turned out to be heaps of fun. I came away feeling much more confident about teaching the classes, and my friends came away with a new scarf each, having learnt a new skill, and (I hope) having a fun afternoon doing it. By inviting people, I’d been giving them an opportunity to come learn something new and socialise, not forcing them to help me against their will. The ones who wanted to come came, and the ones who didn't didn't. Simple as that.

So the big things I learnt in 2013 were to explore opportunities when I notice them - they might turn out to be nothing, or they might turn into something really cool – and to not be afraid of asking people for help, or inviting them to things. Opportunities don’t always knock. Sometimes they’re just standing there quietly, waiting for you to notice them, and if you don’t, they’ll just let you walk away without saying anything. 

Thanks for reading,
Little Miss Autoimmune

Monday, January 13, 2014

Sometimes this Sucks!

Earlier today (or yesterday since it's 2.30am) I wrote a really positive blog post. But I hadn't published it yet, because I hadn't finished checking it and being obsessive, so it's still sitting in my drafts folder.

Then tonight was one of those nights. You know the ones where things keep going wrong until you don't know whether to laugh or cry, and you end up kind of doing both, and then give up on sleeping for a while and decide to write something instead.

Those kind of night suck. A couple of weeks ago, when I'd had an equally bad night I told my friend I'd had an epiphany. It came as I was struggling to get from my living room to my bed because my leg was shaking so much, and I realised I was going to have to sleep in my clothes because I was too unsteady to get changed into pyjamas, and I was going to have to leave the window open even though it was freezing, and I was out of breath because trying to do even the simplest tasks is exhausting when your body is fighting you that much. And what was the epiphany? That this really, really sucks.

It might not sound much like an epiphany or a revelation. I mean it's hardly like I haven't noticed it sucking it in the past. But the epiphany was that I could actually say that to myself without feeling like I had to talk myself into a Pollyanna-type spin of positivity, and without getting angry or feeling devastated, and without feeling like I'm having a pity party just because I'm not Pollyanna. It just sucks, and it's okay to say that.

So tonight's particular brand of suckyness? Tonight is one of those nights where I need to pee every 20 minutes, and it's also one of those night where my joints are particularly sore and my legs keep shaking. My knee buckled when I got to go to the loo earlier, and I crashed into the sink, munting my elbow, then on the way back from the bathroom, my tremors kicked off and I faceplanted onto my bedroom floor. And it's all okay. I'm not hurt, and I got up off the floor without having to press the medical alarm. But by God does this suck, especially as in about 20 minutes I'm going to need to pee again, and I'm going to have to risk falling again on the way to and from the bathroom.

I'll probably publish this post, sleep-deprived typos and all, and I'll publish the positive one too. Because that's what it comes down to chronic illness, doesn't it? The good times and the shite times, and just hoping that at some point the balance tips in your favour.

Thanks for reading,
Little Miss Autoimmune   

Monday, November 25, 2013

How to be a Productivity Hedgehog

The other day I read an article entitled How to be a Productivity Unicorn. Just for kicks really, because there’s not much hope of me becoming a Productivity Unicorn any time soon. Don’t get me wrong, the advice in the article was sound, it just wasn’t aimed at people with health problems who need to count spoons and take naps a lot.

But, just because I’m not a Productivity Unicorn doesn’t mean I don’t get stuff done. I move pretty slowly, need to have periods of hibernation between productive times, and occasionally I get overwhelmed and have to stop what I’m doing to curl up in a ball for a while. I’m a Productivity Hedgehog.

Productivity Hedgehog - getting stuff done.
So here’s my guide on how to be a Productivity Hedgehog.

Don’t be too hard on yourself, but don’t let yourself off too easily either

I regularly don’t manage to finish all the tasks on my to-do list for the day, but I realised pretty quickly that beating myself up about this, or feeling guilty, would just leave me feeling defeated and unmotivated. If you don’t manage to get everything done, give yourself a break – with autoimmune disorders, your body is running on overdrive anyway, so you’re doing a lot even if you’re just sitting still. 

However, it can be very easy to slip into a pattern of not getting things done or putting things off. A few years ago, poet Glen Colquhoun came to speak to my writing group. One of the things he said that really stuck with me (highly paraphrased!) was that everyone will be on your case if you drop out of medical school, but no-one really cares if you drop out of writing. The only person who does care is you, and therefore you have to be your own cheerleader and motivator. When you’re living with chronic illness, it can be really easy to start “dropping out” of things, and people are likely not to call you on it because they’re worried about being insensitive. The only person who can truly keep you on track is you. 

For example, I try to write in the mornings. Some days I wake up and know that I’m in too much pain, too nauseated, or just generally not well enough to do it. On those days, I go back to bed, or do whatever it is I need to keep myself well, and forget about writing for that day. On the contrary, some days I wake up and feel uninspired or unmotivated. It would be easy for me to not write on those days either, and just blame it on my illness, but I know that what I really need to do is employ a bit of “bum-glue,” stick myself to my chair and write my way through whatever’s blocking me. As my old school principal used to say “the best way to get motivated about a task is to start doing it.” 

Learning the difference between “I really can’t do this right now, because I’m sick” and “I don’t feel like doing this, but I can if I push myself a bit” can be a huge step towards not only surviving chronic illness but thriving despite it.  

Stop multi-tasking

This might sound counter-intuitive, but I became much more productive when I stopped trying to multi-task. Trying to do too many things at once left me feeling stressed out, and ultimately meant I stopped trying to do anything. I started out simply by making a rule for myself that if the TV was on, the laptop was off and vice versa (full disclosure, I do have the TV on while I’m writing this but that’s just because I got bored with the film I was watching but couldn’t find the remote!) This simple change meant that I was more present in what I was doing, got tasks done in a shorter space of time meaning less energy expenditure, but also got more quality relaxation time in too. 

Add rest, relaxation and fun things to your to-do lists

If you’re someone who feels guilty about taking time for yourself, adding rest and fun things to your to-do lists can be a good way to get over that psychological hurdle – it’s on the list so you have to do it! This is also something that has helped me to build daily routines as, if you’re not working full-time, days can start to stretch out. It’s easy to end up pottering around for hours and not remembering until the end of the day that you’d meant to watch a certain TV programme, bake cookies, or whatever it is that’s a fun thing for you!  

Routines can sound like scary things that involve a lot of boring tasks and early wake up times, but building a routine around what you like doing, when you naturally wake up and go to bed, and what you actually have energy for, can have just as good an effect on your productivity and over-all well-being.

Do the simple tasks now

I try to make a point of not letting any small tasks end up on my to-do list. For example, dealing with pieces of mail that require a response, such as bills or surveys, straight after opening them, rather than putting them aside for later, means a much simpler and less-overwhelming to-do list. When I’m tired which, let’s face it, is pretty much all the time, it can be hard to feel motivated to do these kinds of things. But realistically, they usually take less than five minutes, and completing tasks, even small ones, feels pretty good.

Similarly, finding ways to cut down on miscellaneous daily tasks can also help save energy. For example, I eat home-made food nearly every day, but I don’t have the energy to cook every night. Every time I do cook, I make extra portions, so I have a supply of left overs. Not having to spend time in the kitchen every night leaves me more time and energy for other (hedgehog) tasks. 

Don’t think too much about tasks before you do them

A few weeks ago, I had several weeks where my diary was absolutely packed. I was going from appointment to appointment, and in between I had to fit in all the everyday stuff. In general, I start to feel a bit panicky if I don’t have at least one or two empty days for rest in my week, but this had gone beyond that into I didn’t even have any days where I had less than two things to do. The more I thought about it, the more stressed I felt, so eventually I stopped thinking about anything beyond the task I was doing, or was about to do, and got through the weeks that way.

Though it’s clich├ęd, “take things one step at a time” is good advice. Being present in what you’re doing, rather than stressing about what you have to do later, is considerably easier to say than to do but attempting to gently redirect your thoughts every time worries start creeping in is worth trying. I would have been shocked to hear myself say this a few years ago, when I was doing everything I could to get out of doing relaxation/meditation, but it really does get easier. 

Thanks for reading,
Little Miss Autoimmune 

This post was cross-posted over at Systemically Connected