Acceptance Goes Both Ways

Molly Stick and Tilly hanging out

Learning to accept things is a big part of living with chronic illness. For a long time I resisted that idea, as acceptance seemed like giving up. I wanted to keep fighting for something better, rather than “give in” to being a sick person. But after going through the pain clinic programme (and a bit of mental adjustment) I learned that acceptance is not about giving up. Instead, it’s about continuing on with your life, still working towards goals or carrying on with with things you love, but just realising that now illness is going to be a part of that. Rather than trying to fight against it to get what you want, you give it a hug and convince it to come along for the ride with you.

I think these days I find it easier to accept the bad parts of my health than I do the good moments. I’ve never thought of myself as a particularly pessimistic person, but when things are good, I tend to assume it’s only temporary. I guess a lot of this is down to experience. For the last two years I’ve gotten really excited over the fact that my symptoms got so much better over winter, thinking that I was heading into remission, only to be disappointed when they worsened again in summer. This winter I’ve been the healthiest I’ve been in about 15 years, which has been fantastic, but there’s also been the nagging thought in the back of my mind that it’s all going to come crashing down as soon as the weather starts to get warmer. Perhaps it’s just the fact that I grew up with a very superstitious mother, but I always feel like if I start making plans, allowing myself to do more or changing things in my life to suit my good health, I’ll be tempting fate and the universe to go: “haha, just kidding, here’s a MASSIVE flare!”

But acceptance should go both ways. I should be able to accept things being good in this moment, without mitigating that with what I think they’re going to be like in the future. I should be able to do more, and enjoy life the way it is right now, without worrying that doing so is going to come at a cost.  

Last week I was thinking about the problem of poor MollyStick falling apart. In the week after I hurt my arm, when I was walking without her, I realised that a lot of my reliance on her is psychological rather than physical. No, I can’t get up and down stairs or steep slopes without her, and I definitely can’t get on and off buses unaided, but when it comes to just generally walking around I’m usually fine. My lack of confidence with walking was more about the possibility of my legs becoming unsteady, than it was about them actually being unsteady (though there was a bit of that too!)

Ideally I would like to be able to go out without a mobility aid on the days I’m feeling well. Before I started walking with Molly Stick, I could keep my health problems private if I wanted to, because there weren’t visible signs for people to ask about. There are times I really miss that, as it can get exhausting having that conversation over and over, and sometimes it would be nice not to feel like a sick-person all the time. However, going out without a stick would mean I couldn’t go anywhere involving stairs, buses, or steep slopes which rules out a lot of Wellington! And if I did start to get tremors or bad pain, it would be a lot harder to deal with unaided. So I started thinking about what options might suit that, and I realised a folding-up stick that I could put in my handbag when I don’t need it would be perfect. It would be there when I needed it, but I wouldn’t be stuck with the all-or-nothing element that comes with a more cumbersome crutch. Folding up sticks are slightly less secure than crutches, as you don’t have the bit that goes around your arm, but since things have been better lately, I might be okay without that extra security all the time anyway.

Now, there’s a part of me that thought even considering this was bound to make things worse again. And truth be told, I did have kind of a bad fall the next day, and had to press my medical alarm as I'd landed with my arm pinned awkwardly (and painfully) underneath me, making it impossible for me to get myself up. For a couple of hours, the superstitious part of my brain went into overdrive, not helped by the ambulance officer telling me I seemed far too unsteady to be walking with anything less than a walking frame, and the fact that I had a second, smaller, fall in the morning which split my toe open. But the reality is, I have falls sometimes. And I have tremors sometimes. I’m especially likely to have falls and tremors when I’m really over-tired, which I was that day, and I was probably in a bit of a flare anyway. None of that means that all the good days I’ve been having lately are all going to be replaced with ones like that. It just means that I had a bad day.

Today, my doctor and physio both signed off on new (as yet to be named) folding stick. I walked up and down some stairs with her, and I’m feeling really happy about the freedom this will allow me. This might sound superficial, but new stick is also very pretty with a silver and purple design, which makes me happy as well. Things may get worse again. I may find that new stick isn’t secure enough for me, and I may need to go back to using a crutch. But for now, I’m going to take a deep breath, accept that at the moment things are going well, and enjoy this. One of my friends suggested a little while back that when it came time for Molly to retire, and a new stick to take her place, I should throw a party to celebrate and for Molly to pass on her wisdom to new stick. This seems like the perfect way to tell the nagging superstitious part of my brain to take a hike, because right now things are good. 

Thanks for reading,
Little Miss Autoimmune.

Update 13/10/14 New stick's name turned out to be Tilly. It didn't all go smoothly at first - I kept forgetting that there wasn't a bit around my arm, like with a crutch, and so therefore kept letting go and dropping her. I also found my hand was getting really sore, as I felt the need to grip much tighter than I had with Molly. Both of these problem improved after getting a lanyard (I'd highly recommend one of these if you walk with a stick.) I have been trying to fold Tilly up when I'm out, to see if I can walk without an aid, but it turns out my right hip and knee start to really hurt when I do this. I'm going to keep trying short distances, but won't be walking completely without a stick anytime soon.

 

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   

Sick-Cycle Carousel

You go through many cycles with chronic illness. Flares. Remissions. Good days, bad days, round and round and round.

I knew posting about things being good was a bit of a risk. There’s always part of me that thinks The Universe is going to go “Oh, you thought things were going to stay good? Haha, nope! Here’s a flare.” And that did kind of happen a little bit after I posted about how well things were going.

A couple of days after writing this post, I had my monthly blood test and my labs were out. Considering my labs are usually normal even when I’m badly flaring, it was a bit worrying. Since then, most of the things that had got better stayed better (Yay!)... but some other new symptoms popped up*. And so the cycle goes round and round and round.

Another cycle that will be familiar to many others with chronic illness is the grief cycle.

I’ve been struggling quite a bit with dropping things lately. I’m not entirely sure what’s causing it – my guess would be a combination of pins and needles, tremors and raynaud’s. Whatever it is, I’m decidedly more fumbly that I used to be. And my poor dishes have not been faring particularly well! Last count, 1 glass, 2 bowls, 1 mug, 1 dinner plate and 1 side plate have fallen victim to my hands. Plus a few other things are now either chipped, or have learned to bounce. Even when the crockery itself doesn’t break, just having the contents go everywhere can be annoying enough. I really wasn’t sure whether to laugh or cry when I dropped an entire glass of almond milk into an open drawer. Don’t be fooled by the almond part – after a couple of days, it smells just as bad as normal milk!  

So, after being upset about this for a while, I got this pretty awesome drink bottle (or three of these drink bottles to be more accurate.) And on the day I bought these, I was really happy, as I now had a solution to this problem. But then I had to grieve for a while, because finding a solution made me think again about the fact that there was a problem in the first place.

Similarly, I’ve been avoiding ordering drinks in cafes, or having anything other than water out of my bottle at other people’s houses, due to not wanting to make a mess or break other people’s stuff. I was thinking about this today, and I realised I could easily ask café staff or friends to put drinks in a mug or paper takeaway cup. I might get a few awkward questions as to why, but with Molly-Stick around I get awkward questions anyway.  It’s not a perfect solution, as even with the handle I do sometimes drop mugs, and takeaway cups are hardly environmentally friendly, but it’s a solution none the less. And so again, I had to grieve about the fact that I had a problem that needed a solution.

Remembering that it is a cycle does help. Bad days suck, but good days are part of the cycle too. And the cycle of grief, it is a bit of an emotional rollercoaster to be upset by both the problem, and the solution to the problem, but I’m kind of an emotional person. If I wasn’t getting upset about that, I’d probably be crying watching Shortland Street, or something equally ridiculous (by the way, totally cried watching Shortland Street last night.)

There’ll be good days, and there’ll be bad days, and I’ll cry about stupid things. But sometimes I’ll laugh about stupid things too. With the almond milk, I settled on laughing.

Thanks for reading

Little Miss Autoimmune

*I will post properly about this at some point, but still a bit too close to it to talk properly about it yet.

I'm doing a happy dance!

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

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

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

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

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

Thanks for reading

Little Miss Autoimmune

(Not-so) Invisible Illness

The other day I was getting on the bus (to ride the three stops from the shop to my house because I was too tired to walk) when the bus driver leapt up and grabbed me because he thought I was falling over. It was quite alarming, because I wasn’t falling over and had no idea what he was doing, but he meant well and it was nice to know that, had I been falling over, he would have been willing to help. After realising his mistake, he then took my card and tagged on for me and waited until I’d sat down before starting off. When I was getting off the bus (three stops later) he looked worried and asked if I had far to walk from there. I didn’t – the bus stop is just around the corner from home – but again, it was nice of him to check (not really sure what he was going to do if I did have far to go though?)

I was thinking about all this later. Part of me was happy to know that there are nice people out there willing to help out someone they feel is in need, but the other part of me felt sad and I wasn’t quite sure why. I, like most people with invisible illnesses, am far more used to the old chestnut: “But you don’t look sick!” Or when they see my crutch: “So what have you done to yourself?” I’m so used to people not believing me, or simply not realising, that it felt really strange to have someone notice I was struggling just by looking at me.

As I’ve got sicker, it’s become far more visible. While I’ve walked with a crutch for a long time, it’s now quite obvious that I really need it. My legs don’t always do what they’re told, and get a bit wonky-donkey when I’m walking. Tremors are hard to hide – in particular the new fun symptom of my head bobbing – and of course rashes, being pale/green and weight-loss tend to be fairly noticeable.

After a few minutes of moping over all this, I realised I didn’t care!

A few people have looked at me strangely when my head starts bobbing, but once I explain that I’m not really emphatically agreeing with them they don’t mention it again. A few days ago, I was stressing about going out to dinner because my tremors were really bad. Then I realised, no-one is going to laugh at me (and if they did, they certainly wouldn’t be the kind of person I want to hang out with!)

Being sick – invisible or not-so-much – is hard, and the majority of people get that. The ones who don’t, either just have no idea and will probably change their tune once they understand a little more about invisible illnesses. The ones who do understand about invisible illnesses and still don’t get it? Well, maybe I just don’t hang out with them :-)

Little Miss Autoimmune