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

Pacing, planning and prioritising....

I am again, sitting on the couch in my pyjamas, though this time I am actually working (and by working, I mean waiting for a call to come through.) Note: if you ring a mental health helpline, the person you speak to may very well be wearing pyjamas. It's kind of an industry thing :P

Anyway, I wrote a blog post last night, but then the internet stole it and won't give it back.... or maybe I'm just really technologically challenged. The point is, I was too tired to re-write it and in the interest of not exhausting myself, I'm just going to post an article I wrote for my work newsletter instead. It's about pacing, so I thought it was apt...


When I think of self-care, I usually think of adding things to my day: adding exercise, eating healthy foods, getting enough sleep. Recently I’ve realised self-care is just as much about saying “no” to things. Now, I’m not talking about the obvious – saying no to cigarettes, alcohol, stress etc. (although that’s a part of self-care too!) What I mean, is saying “no” to those things that suck up our time and leave us collapsed on the couch at the end of the day.

When I’m trying to explain what it’s like to live with a chronic illness, I often talk about Christine Miserandino’s “spoon theory”. The essence of this theory is that, when you live with a chronic illness, everything you do costs you a “spoon.” Under normal circumstances, a healthy person will have an almost unlimited supply of “spoons”. They don’t need to worry too much about overdoing it and running out. A person with a chronic physical or mental illness will have a limited amount of “spoons”. To make sure they still have enough energy to make dinner at the end of the day, they will need to keep an eye on how many “spoons” they use up during the day.

This is where pacing, planning and prioritising come in. I know that for me to stay healthy, I need to really think about what I include in my day. There are things that I have to do because... well, they’re just facts of life – work, study, chores, cooking. There are things I need to do for my health – exercise, physio, doctors appointments, and then there are things that I want to do – creative projects, socialising, retail therapy etc. Prioritising doesn’t mean anything that’s not 100% necessary gets chucked off the list; it just means I have to work out how I’m going to fit it in without running out of “spoons”. It might mean that I choose to meet up with friends on the days I’m not working. Or it might mean that if I’ve got a doctor’s appointment and a deadline on a writing project, the cleaning might have to wait until tomorrow. If I know I’ve got a busy day coming up, I’ll make a big meal the day before so I can have leftovers for dinner rather than having to cook after a long day.

Learning to pace myself has been a hard journey. Sometimes I’ll wake up feeling like I have an unlimited number of “spoons” only to get halfway through the day and realise I just don’t have the energy to get everything done. Then there are the days where unexpected things happen, and my energy is taken up with things I hadn’t planned for. Either way, the next day I have to come back to it: pacing, planning and prioritising. It’s a slow journey, but in the end, it will all get done. Just maybe not as quickly as I thought.

Check out spoon theory at:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Little Miss Autoimmune :-)