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.

Feeling empowered!

So today I’m feeling somewhat empowered. The pain has died down a little, it’s not quite as bad as it was all of last week, so I’m thankful for that as last week was awful. 

I keep saying the word ‘if’ in the terms ‘IF I get into college’ ‘IF I pass the course I can go to university’ when I really should be substituting ‘IF’ for ‘WHEN’. ‘WHEN I get into college’ ‘WHEN I pass the course I can go to university’.

I’m feeling somewhat empowered, that I will get into college and I will be able to cope because it’s something I really want to do. I want to go to college, I want to end up going to university, I want to make something of myself other than staying in bed and living off my parents. And I will do it, today I don’t care what it takes I’m going to do it and I’m going to pass with enough credits to get me into university. 

I can do this, I can live despite pain. Yes I’m going to have bad days, that comes with the territory with chronic pain but I will do this! 

 

I hate waiting!

I feel like I’m forever waiting for something, firstly I feel like I’m always waiting to get better, though I’ve accepted that I probably never will but it’s hard to shake the feeling that one day maybe I will get better, so I’m always waiting for that day. I have a diagnosis where no one knows if I could potentially get better. It’s unlikely that I will, I have the most resistant form of headache condition, no medications or treatments have helped me and it’s unlikely that my headache will just go on it’s own. But little is known about NDPH and it’s causes so you never know.

Right now I’m waiting for a few things. I’m waiting on a reply about whether I’m being offered an interview at the second college I applied to. And I’m waiting on a reply from the DVLA about my provisional licence. I keep anxiously waiting the post man to see if anything comes but nothing has, it’s a bit soon for a reply from the DVLA as they aim to get back to you in 3 weeks and it’s only been about a week and a half, but still I’m waiting. And I don’t know when I will hear back from the college, I got a letter saying they had received my application the other week, but it didn’t say how long it would take to hear back about an interview, that’s if I’m being offered one. And I’m nervously awaiting the 23rd of April which is my interview date for the other college I applied to.

And in under two weeks time I’m off to Dubai again for 10 days. Will get to see my sister and dad, drive my car there and get a new laptop. So I’m also waiting for that. I’m actually looking forward to going to Dubai this time. I know the pain will probably get bad when I’m there because it always does but I’m still kind of looking forward to it. It will be the last time I will be going to Dubai for a while, usually go every 6 weeks, my mum is going back out in May to support my sister through her AS Level exams, but I don’t really want to go back out there like two weeks after we get back in April so I’m staying with some family friends which will be nice. And then my sister is coming here for the whole of summer and my Dad for a bit of summer, and then I won’t be going back out till October. As I will hopefully be in college from September, but there will be half term holidays and during that is my mums 50th birthday so we are going to Dubai for that. So yeah it will be my last visit to Dubai for a while, and I’m looking forward to it for once.

I don’t like waiting, I just want some letters to come in the post with good news, saying I’ve got another interview and my provisional drivers licence. Feeling rather inpatient. And I know they will probably come in the post when I’m in Dubai which will be rather annoying.

A hundred knives in my head.

I don’t know what to say, other than the fact that I feel like there are a hundred knives in my head and that it feels like my brain is getting crushed inside my skull at the same time. 

I’ve hit a 9 on the pain scale, been there pretty much all day, I can’t do anything but lie here in bed in agony feeling miserable (it’s taken a lot to be able to write this post which has taken me about 5 hours to fully write and I’m thankful I’m not sensitive to light). There’s nothing I or anyone else can do to make it any better, nothing eases the pain so I just have to suffer. Which makes me more angry and miserable. 

I’d been having a bad week anyway with the pain, but today is the worst it’s been all week. 

Overwhelmed with anxiety.

I literally have so much anxiety going on right now, even in my darkest moments I don’t think my anxiety has ever been quite as bad as it is right now. I can’t stop worrying about pretty much everything that’s happening in my life right now, I feel so overwhelmed with worry I feel very scared and on edge and I’m not too sure how to cope with this much anxiety.

A lot of my worries and anxiety right now is about going to college. Firstly I’m worried that I won’t get into college, then I’m worried about getting into college, that it will cause the pain to get worse, that I then won’t be able to cope, that I will either fail my course because of the pain or I will have to drop out cause I can’t cope. Then that leads to further worries about failing and dropping out, will I then be doomed to spend the rest of my life in bed not achieving anything because the pain won’t let me, having to live off my parents for the rest of my life because I can’t do anything cause of the pain. I don’t think I can handle more failure, I’ve had so much of it, I think if that happens and I either fail or drop out then I will just end up retreating into my deep dark pit of depression and not wanting or knowing how to get out again.

To be honest I’m terrified of failing, but I know that doing nothing has not been helping me, so I need to try to do something like going to college, I still want to go, but I’m just really scared of what going will mean for my pain. I want to accept and move on with my life, live despite pain, but what if the pain won’t let me?!

My pain levels have been quite high since Sunday, and my anxiety is also at an all time high which probably isn’t helping the pain. But I just don’t know how to stop worrying about everything. I feel very overwhelmed with anxiety and I’m not sure how to handle it, I feel very scared and sick with worry, but I don’t know how to let it all go.

Pain management program.

So I had an appointment at my local hospital with a pain management consultant today. I was referred back in November but the appointment only came through for this month. I had been in two minds about canceling it cause I wasn’t sure if I could handle another person telling me there is nothing more they can do or offer me to help. So I decided I would go anyway. 

But I was right the consultant said there is nothing more medically to do, other than wait for Occipital Nerve Stimulation surgery to become available again on the NHS. He said that he didn’t think opiates would help as nothing else has helped and he said even if they did initially help they would most likely stop helping after a while and then I would have ruined my chances of getting ONS surgery as I can’t have been on opiates if I want that. So waiting is my best option for ONS is my best option.

But he said a pain management program might be a right path to go down and they do one at the hospital I went to today. He said he would write me and my GP a letter stating about this and then I could discuss it with my GP and maybe get a referral to a program. So I think I’m going to do that. I’m kicking myself though as I should have asked if there was a waiting list for it or anything but I didn’t think of that question at the time. As I would need to do the program before September as after then I will hopefully be in college and won’t be able to take what could potentially be a couple of weeks out. 

I’m interested to know if anyone that reads this has been on a pain management program and what it was like? So if you have I would love to know your experiences with it, if it helped, what it was like/involved?!

So Sian, what did you do today?

There’s this guy who I know from Tae Kwon-do training and every time I see him he asks me if I watched Jeremy Kyle that morning (for those of you who don’t know Jeremy Kyle is, it’s a tv show on in the morning in the UK which is where people go with problems like for example ‘did my boyfriend cheat on me with my sister’ or ‘who is the father of my baby’ and the guy talks through their problems and when I say talk there is often a lot of shouting and arguing, and they do like lie detector tests and DNA tests and what ever is needed to help sort the problem). I don’t actually watch the show but everyone in the UK knows about Jeremy Kyle and what the show entails.

But this guy asks me every time I see him if I watched it that day, because he knows I don’t go to school/college/uni and I don’t work. And apparently if I don’t do any of that then I must be watching Jeremy Kyle and daytime TV all day, which isn’t the case at all. I find it rather offensive that he asks me this practically every time I see him which is often at least 4 times a week. He also briefly knows that I’m ill and therefore unable to do much a lot of the time. Which is slowly changing hence applying to college, but he doesn’t know that as I haven’t told many people encase I don’t get in. But I just find it rather rude, he doesn’t know me that well doesn’t really know in detail why I don’t go to college or uni, yet still feels it’s fine to ask me if I watched Jeremy Kyle every day.

I find the question what did you do today? or how was your week? very hard to answer, it’s not that I don’t do anything all day every day, I find things to fill my day, I do some Tae Kwon-Do studying every day, I go out with my mum, I read I watch some TV shows on my laptop and most evenings I go to Tae Kwon-Do training if the pain allows me. I don’t literally do nothing all day every day, sometimes I do when the pain is really bad and it means I can’t do anything but that’s not usually every day.

And then there’s the how was your week question, I always say it’s been okay, even when it hasn’t which is usually the case cause of the pain. But people don’t really want to hear the real answer they are just looking for the answer it’s been okay or good etc. It’s like the question how are you? People aren’t looking for the truth it’s just a nicety question, what you say when you see someone. They don’t want to hear, ‘oh I’m awful, very depressed, contemplating killing myself etc’ They want to hear ‘I’m okay’ ‘I’m fine’ or ‘I’m good’ and then move on with the conversation. Most people anyway, though I’m not really like that because I know how much it annoys me, so when I ask someone how they’re doing, I’m genuinely interested in how they are and if they are actually okay or not. I honestly wouldn’t mind if they told me the truth that they are doing awful, I’m a good listener and if someone wants to talk about it I would happily listen. Though I admit it’s difficult to weed out the people like that from the ones that just want the standard ‘I’m fine’ answer.