I had a chat with my sister this evening that I want to share with you all. It’s an important one I think that every person with any form of chronic pain needs to have at some point. And it’s to do with how we perceive our place in the world and our abilities to enjoy life. It’s also to do with how we feel about the help we receive from those closest to us. Something I’ve had to battle with a lot recently. But here’s the thing, unless we talk about it with those helping us, we’ll never fully get a clear picture, and for those of us who also have mental health issues, it’s essential that we have this conversation.

For the past few days I’ve been struggling with my lower antidepressant dose which hasn’t helped with the way I view myself or my pain. I’ve been pretty much beating myself up, and things haven’t been going the way I planned, and it’s all added up into this huge bubble of anger at myself, which has been, in part taken out on my sister, without me meaning to. It culminated in a pretty intense scene last night where I sobbed my eyes out, decided to titrate my dose back up, and speak to the doctor when I get home. But my sister and I talked about it. We discussed what was going on, and now we both understand each other a little clearer. Today for me, as a result of that chat, and adjusting my meds, has been hugely different.

Here are the things we discussed tonight, further to that conversation last night, things that may or may not be helpful as a checklist of sorts to remind myself of and that may be applicable for others:

• Keep in touch with my pain – what sort of pain level am I in when I wake up? It’s going to have a relationship to what I can do for the rest of that day. What sort of pain am I in when I go to bed at night? That’s going to have a bearing on my sleep and if I need to adjust my pain killers that night, or take one of the dreaded sleeping tablets the doctor has given me, which can leave me feeling like a zombie for the next few days.
• Is it a walking sticks or a wheelchair kind of day? – this tends to be based on what is being done that day, where I am, what sort of transport is being used, if it’s possible to use the chair, and if I can get away without it. Currently I’m in London, and I have to say, TfL (Transport for London) have a lot to do to make their system fully accessible for wheelchairs, so if I can I’ll use my sticks, but that also means working out just how much walking I can do that day. Some places, like the museums, have wheelchairs that can be borrowed, and may be available on the day when you turn up, but if you’re going at a peek time it’s important to book one. More on that in another blog post though. Today I was sat writing my novel, so that means it’s a walking stick day, and a huge shout out to CitizenM Tower of London Hotel whose lobby I’ve been using to write in because it’s a fab atmosphere with an amazing cup of coffee.
• Stop being so hard on myself – This one came from my sister. I need to stop being so hard on myself. In the week since we arrived in London, I’ve walked about ten miles on my sticks. It’s hurt, and I know that once I’m back home in West Yorkshire, I’ll probably need a recovery period, but I’ve done it. When I’m here I want to do it. I pace myself better, and I’m better able to do it. I’m motivated here because it’s warmer than up North, and that in itself helps to stabilise my pain levels.
• I am not a burden – so many of us in the chronic pain family the world over feel this way. But my sister reminded me today that just because I feel it does’t mean I am. If I can’t do something, there’s no shame in it. I may be stubborn but I shouldn’t be so stubborn as to cause myself more damage, and my sister wouldn’t be here with me, helping me, if she didn’t want to be.
• Chronic pain doesn’t mean the end of life – it means making adjustments to life. It becomes a new chapter in your life. I still don’t have right pain meds, and I am still playing with my C-PTSD ones to get the right dosages, but actually, when I’m calm and able to think without the various demons screaming and yowling inside my head, I can honestly say that this life of mine isn’t the worst one it could be. Actually it’s pretty damn good. And I still get to do a lot of what want I want, just as long as I remember to pace myself.
• I am loved – I have some pretty awesome people in my life who would literally jump in front of a speeding bullet for me in a heartbeat, eve when I feel I don’t deserve it. And that in its own right is epic. I’m loved right to my very core. And yes the past few days have been extremely tough, the past few weeks and months even more so. There have been things going on that I can’t share because of various reasons, but let me just say that I’ve been reminded in the past few days I’m loved and very much wanted in this world, even when I feel like I’m not needed.
• Today was a struggle, tomorrow may be too, but it doesn’t mean there aren’t happy days in the future – Each crappy day has its drawbacks. Each pain filled exhausting day where nothing seems to go right also has something good in it, even if it’s one tiny little thing like having a cup of tea. And even though those days might seem to roll into each other and the negative be the thing that draws your attention, in a few days, a week, a month, or even a year, there will be a day, or even a good few days in a row, where you will know that it’s all been worth it. Don’t give up. Try and look for the tiny good in each day, because the tiny good can make the bigger good seem that bit closer and make you feel that less exhausted.
• Keep on self-advocating and taking those who care along for the ride – if the doctors aren’t listening, make them listen. Repeat yourself. Get your loved ones to go with you and repeat what has already been said. Get a second opinion, get a third opinion, keep getting an opinion until someone listens to you. YOU are the best judge of what’s going on in your own body. And if they don’t give you that appointment you were referred for, chase it up, keep chasing it up, and keep demanding it. Don’t take no for an answer. And this goes for other things like dealing with the people who decide on the benefits you receive as well. Get the back up from local agencies who can help you and support you through it. Appeal, appeal, appeal.
• Don’t give up – you’ve got this far. You’re not self-harming any more, you’re not drinking yourself into oblivion, your eating disorders are in remission. Why are these all so important? Because it proves that you can do it. You’re in more physical and emotional pain now than you have been combined throughout your life and you’re doing it. You’re doing it without those crutches. Look at you. Look at how far you’ve come. Keep talking it out. Keep pushing yourself to say it. Keep saying it. And don’t give up.