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.

 

Why My Crutch Has a Name

My crutch’s name is Molly Stick. First name Molly, last name Stick. I’ve found this to be quite a good personality test. People tend to react in three distinct ways.

1)      They totally get it. Their own car or phone probably has a name, and there is absolutely no question in their mind as to why Molly has a name. I like these people a lot.

2)      The idea of naming inanimate objects is foreign, but they’re willing to go along with it, much like they would when indulging a small child's imaginary friends. They’re easy to recognise by the slight hesitation every time they use the name ie. Do you need… “Molly”… Stick? They do tend to write “Molly Stick” in quotation marks as well. These people are really sweet for trying, though I do always wonder if they secretly think I'm an idiot.

3)      They find concept of naming inanimate objects very weird and it makes them uncomfortable. They generally refer to Molly as “your stick thingie” or some variation of such. It’s very tempting to start naming other random objects around these people just to confuse them – “And this is my door handle, Susan… and my cushion, Barry…”

Last week wasn't the best week. It started out okay, but then there was an incident involving a trestle table, and my arm getting mangled when I tried to put it up by myself. I’m not entirely sure how I thought that was going to end – me getting mangled is kind of the only logical conclusion to that scenario – but these things happen, so I’m trying hard not to be too pissed off with myself. Unfortunately, to complicate things further, it was the side I use Molly Stick on, so she had the week off while the swelling in my arm went down.

I always thought it was stupid when people said things like: “I feel naked without my (insert object of importance to them)” but that's exactly how I felt about going out without Molly. I’m normally pretty good at faking confidence when talking to people, but I discovered feeling unsteady, and physically unsure of myself, brought my natural shyness out of hiding. It also didn't help that it was a particularly unsteady week as, after several months of being fine, my legs lost the plot on Thursday and started spazzing out again. I'd been getting signs that this was heading my way for a while. I'd had some unusual muscle spasms in my arm the Friday before, and I'd been feeling generally unwell all week. But living in denial is way more fun than accepting you're heading towards a flare, especially as I knew it was going to be harder to deal with without Molly!

Five or so years ago, when I first started needing a crutch, I felt pretty resentful towards the whole thing. It was hard not to see it as losing independence, mobility, youth… all of that stuff. I was reading Diana Wynne Jones’ Howl’s Moving Castle at the time, and I really liked the relationship the main character, Sophie, has with her walking stick. She talks to it, treating it as not only a physical support, but also a companion/moral support, and, as the story progresses, as a magic wand – it is Diana Wynne Jones after all! I decided to try doing the same thing, treating my stick as a friend, that is. It worked. I felt better about it, and I've referred to her by name ever since.

A few months ago, Molly started falling apart. I’ve had to replace a couple of parts, and she’s now sporting some lovely blue electrical tape (Kiwi ingenuity at it’s best!) One of my friends suggested it's time to think about replacing her, and I surprised both of us by getting choked up at the idea. Molly really has become a friend, and the idea of losing her is as hard to accept as it once was to accept her place in my life at all. I've realised Molly isn’t the thing taking away my mobility or independence – she's the one giving it back to me. 

Thanks for reading,
Little Miss Autoimmune