A (love?) letter to my own body

Dear Body,

I want you to know I hear you.

I was pretty unimpressed when you wouldn't let us get out of the bath last night. This is something I've always worried about, but somehow I still managed to be surprised when it finally happened. I guess because you'd been behaving so well lately, you'd lulled me into a false sense of security.

I was pretty angry with you, Body. As much as I try to be Zen about the all odd things you insist on doing, this time you really pissed me off. And truth be told I was a bit scared. Yes, we have things in place to make situations like this okay... but all of the possible solutions still required either pain or embarrassment, and I just didn't want to deal with that. 
 
The thing is though, once it became clear we weren't going anywhere, and I made the plan to just top up the hot water and wait it out until you agreed to start working again, I realised this was your way of trying to make me listen. You don't have that many ways of communicating with me, do you Body? And so you tend to pick the ones that you know I'll take the most notice of - dropping my blood pressure so I have unplanned lie downs, making my limbs stop working properly so I have to stop moving, and of course our old friend Pain.

I know you think I don't listen, and sometimes you're right. I keep pushing you when you're telling me that you need to stop; that you need to rest. I haven't been doing that good a job of taking care of you lately, have I? I haven't been sleeping enough, or eating enough (though if you could ease up on the nausea a bit, that would help!) I've been making you do too many things, using up more spoons than we have, and I've been worrying and stressing out too much.

But I want you to know, I hear you.

We've been here before. At the start of the year, I didn't listen to you, and we ended up in a pretty bad state. I promise you, I've learned from that. You need to trust me, Body. Sometimes I am going to push you more than feels comfortable, but you need to trust that when I do I will have rest planned for you afterwards. Guess what, Body? We have the whole week off next week! And I'm going to do better on feeding you nourishing food, getting you to bed early, drinking enough water, remembering to take meds on time, and getting gentle exercise. I'll even give the relaxation stuff another crack too. In return, can you please just hang in there and not freak out? 

Ultimately, I know that you are just trying to protect us with all your over-zealous immune-system activity. Your methods are pretty are pretty flawed, but I know that somewhere deep down it comes from a good place. So really, Body, we both want the same things. We just need to trust each other, and give each other a break sometimes.

Lots of love,
Helen

P.S. Thanks for finally letting us get out of the bath without help. I really appreciate it xoxo

Little Miss Autoimmune

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.