I have not given up.

So I’ve been talking a lot about acceptance and moving on recently, I’ve been working on ACT (Acceptance and Commitment Therapy) with my psychologist and it’s really made an impact on me. If you’re reading this and you are struggling with chronic pain/illness, I would really recommend finding a therapist to work with who is familiar with ACT, it doesn’t necessarily have to be one that specializes in treating people with chronic pain, though it is good to speak to someone who can almost understand what you are going through with chronic pain all be it they probably haven’t suffered it themselves. But yeah if you are reading this and struggling with chronic pain so badly that you are seriously depressed like I have been, ACT could be something really beneficial to you.

It works through things like mindfulness, your values and values illness; trying to get you closer to understanding what your life values are and getting you closer to achieving them by realising how you truly want to live your life.Tries to get you to understand that controlling your pain is not the answer but you can control how you live your life despite pain. It talks about clean pain (your actual physical pain) and your dirty pain (your suffering caused by the pain) and how you can separate the two. Thought difusion where you are looking at your thoughts rather than from them. All this is working towards acceptance.This is what we have covered so far, there’s obviously a lot more to it, but I’m just getting started.

My psychologist gives me sheets to read every week from the book Living beyond your pain: Using Acceptance and Commitment Therapy to Ease Chronic Pain and they have exercises to do also. Previous exercises that I’ve been given have been Clean Pain Vs Dirty Pain, where I had to write my clean pain and the level that was down and then my dirty pain connected to the clean pain down and write the level of that down also, that was fairly easy. Then there was my values; the values I have in areas of my life such as; Intimate relationships, family relationships, social relationships, work, health, leisure, personal growth, citizenship and spirituality; this one was pretty difficult, it’s hard to sit down and actually think about what your core values are in life; yes it’s valuable to know your values (see what I did there?) so that you can start to work towards where you want to be in life, but it’s bloody difficult to actually think deep down and know what your values actually are. Then there was my least favorite; attending your own funeral (yes I know it sounds pretty morbid) I had to imagine I had the ideal life and in each area of my life (see above) I had to write down a person from said area of my life and write down what I would want them to say at my funeral. Firstly I found it really hard when I was doing it to imagine my ideal life when I was in such a dark place (I did it a month or so ago when I was in a very deep dark place) and then I found it hard to think of people, if you think about it the ideal life would be growing old and then dying, so many of the people you know now will most probably not be alive when you’ve grown old so they wouldn’t be able to attend your funeral. And I just couldn’t get past that obstacle. So that was my least favorite task I was given.

I saw my psychologist not last week (she was away) but the week before and she gave me more reading and exercises to do. So this week I am doing a painful thinking diary, it’s a sheet the you complete every day and has each hour of the day marked and when you think about the pain you write down what your thought connected to the pain was, how intense that thought was and the actions the thought leads to. (Ops I forgot to do it today) This is working towards thought difusion. Then there is the whole imagining your painful thoughts flowing away, like watching a busy road with cars attaching your painful thoughts to them and watching them pass away, rather than sitting with your painful thoughts, just letting them go. Which I find very hard as I have trouble with imagination (I just don’t have one) So imagining cars and my thoughts floating away is hard. Then there’s the arrogance of words and how words really don’t have much meaning they are just letters arranged to make a sound (Don’t get me wrong I’m not saying words have no meaning they do, but take for example the words ‘my head’ which is where my pain is based so is what I am using for the exercise, I have to write down all the thoughts that come to mind when I say the words ‘my head’ all the painful thoughts and emotions that them words mean to me. And then after doing that I have to say the words ‘my head’ over and over again, and then do they still have the same psychological impact on me saying them over and over rather than just once and then thinking about it, well they don’t they are just  words when you repeat them over and over). So that’s that task. The next one is called ‘kick your buts’ Which are sentences you say to yourself for example one for me at the minute is ‘I want to go to college BUT what if that causes the pain to get worse.’ And then want you do is change the BUT to AND and re write the sentence and it has a different meaning.

So that is the start of ACT and some of the exercises used in the book to help with acceptance for chronic pain. So far they have been really helpful, and if you read my blog regularly then you will know that recently I’ve been doing somewhat better and am actually getting there with acceptance and moving on, trying to get my life back on track.

That said (getting back to my main point of this post, which I haven’t yet covered) I have not given up in my search for relief from my pain. I have tried everything that is available for me to try and decrease the pain and make it more bearable however none of it worked or even helped in the slightest, so I’ve done everything possible in my power to try and ease the pain but there is nothing more available at this time for me to try. I will (if the NHS get their act together and start approving ONS surgery again) be getting surgery as my final chance to try and ease the pain, however the time scale for that is unknown due to the NHS (looking at at least another 2 years). So with my time between then and now all I can do is try to live my life as best as possible despite chronic pain, but I haven’t given up.

If your sitting there reading this and your in chronic pain and like me you have tried everything available to you to try and help and you are stuck as to what to do next. I was too! I’ve been in therapy a long time (about 4 years now, so nearly as long as I’ve been sick) In Dubai I had the most amazing school counselor who always really helped by just talking to her, now I’ve known her so long she knows what I’m like and how I think, I think she’s probably the only person in the world that knows me so well. I also had a psychologist who was lovely but we didn’t really cover much actual therapy we mainly just talked. All that helped so much, but then in September I came across my psychologist who specalises in treating those with chronic pain, and as you can see it’s really helped more than anything ever has, we’ve been working together for 7 months now. Part of the session we talk about how I’ve been and what my thoughts and feelings are each week and then we work through acceptance and commitment therapy stuff as well.

I was stuck for a long time, there was nothing medically more for me to try, I felt desperately helpless, hopeless and alone, among other horrible feelings obviously. I didn’t know what to do, I didn’t think I could live like this for much longer and I was seriously suicidal. But the best thing I could do was see my psychologist, who has helped me realise I can live despite pain even when before I thought that was totally impossible and I couldn’t see how anyone could do that. But it is possible, so if you’re out there thinking you are out of options, you may be medically but maybe therapy might help. It’s helped me so much, not only speaking to someone who I feel understands pretty much what I go through each day but has helped me with ways to try and manage my pain, accept my pain and live despite pain.

ACT and talking to someone won’t take the pain away, it can’t no one can, I know that and it hasn’t for me, I’m still in pain 24/7 and a lot of the time it’s really bad but I’m feeling a lot better despite the pain, it is possible to feel better yet still be in pain and it is possible to live a full life despite pain. You may be in such a dark place right now that you don’t believe that is possible, I know I didn’t but I’ve come to realise that it is possible, it’s bloody hard and takes a lot of work but it’s possible. So if you are feeling stuck and out of options, personally I recommend therapy. Maybe you haven’t been to therapy before but it’s really valuable just talking and therapy, there’s a lot of baggage that comes with chronic pain and it’s really helpful to be able to talk to someone about it instead of bottling it all up. I did that for quite a while until I got sent to my school counselor which was probably the best thing to ever happen.

I am just getting started but as you can see this has made a huge impact on me.

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9 thoughts on “I have not given up.

  1. I was so happy to read this post. It’s the first time I’ve heard from someone using ACT to deal with chronic pain. I personally love ACT, and try using it to deal with my anxiety/depression, but it’s great to hear from a different perspective! I hope it continues to be of great help to you.

    • Oh really, it’s apparently quite popular now with therapists treating people with chronic pain. That’s if you find a therapist that is familiar with using it to treat someone with chronic pain of course. But so far it’s really helped me so I’m all for it, haven’t felt this good (not good really but a bit better) in years.

  2. I have a book on ACT that’s been sitting neglected on my shelf for a while … thanks to this post, I’m going to dust it down and try to have a go at it again. I hadn’t thought of using it in relation to my chronic pain before. Hope it continues to have a positive impact on you and thanks for writing about your experience with ACT.

  3. Impressive work! I have been looking into this therapy for a few weeks now and was thinking of trying it out. I’m glad I read your post about your experiences with it as it makes me want to try it even more. I know you are in pain every day but all of the things you are doing seem to be in the right direction. Thanks for sharing this info with us. Helped me quite a lot! XO

  4. Great to see someone blogging about the experience of ACT. I’ve started blogging about mindfulness for my clients and am trying to find good posts for them to read during the week. I think articles like yours are really valuable because you talk about things others could relate really well too. Please keep posting! 🙂

    • Really glad you like my blog and that it is of some help to people. Don’t worry I don’t plan on stopping blogging any time soon 🙂

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