I had to come back to this thread as I wondered if the help I had might help you. Lots of people tell you to have a positive attitude and that you’re not alone. I heard all that kind of stuff and thought “well I’d like to and I try to but it just feels like pretending”. The question is one of how to develop that positive attitude. It sounds like you just don’t know how - if that’s how you feel then you really aren’t alone, that’s how I was. I started my MS journey with walking problems and bowel incontinence and after 15 months I was told it was a clinical isolated syndrome that may be the start of primary progressive MS. Then just left alone to see whether it progressed. I tried to keep a positive face on things, but every time I was alone, even just brushing my teeth, I’d be sobbing. I felt suicidal and admitted I needed help. I started on antidepressants but was fortunate to also see the clinical psychologist at the neurology department.
Okay, so you’ve heard anti depressants and psychologists before, but bear with me…
The first few sessions we went through my history and talked about all the standard things you’ve no doubt heard psychologists say before. I tried everything as I had nothing to lose, but even though I knew the logic and sense of it, it didn’t actually make me feel any different - it was still pretending to feel good.
But then I went my next session and my psychologist told me we were going to try something different. She said she’d been reading about Compassion because it was the new buzzword in the NHS, but as she was reading some literature she kept seeing me in it - all the examples it talked about were just like me, they had the same kind of history and events in their lives, they said the same things I said to her, so perhaps it was worth looking at.
It is all based on new understanding of how our brains work, but I won’t start with that. The best explanation I got of it was to think of your brain as like an iphone. You have different apps on your iphone and use them for different things. If you’re like most people, you get distracted. I might want to check how far a journey is so I go to my iphone to use navigation, but see I’ve got a facebook notification, so go onto facebook. Then after going on facebook I usually check my emails, so I automatically go to my email account. After looking at them I put my phone down. Some time later I realise that I forgot to actually check that journey. What went wrong? I used the wrong app!
So it is with our brains. The science bit is that they’ve found we have 3 main systems in our brain: there’s a drive system, that makes us seek food, shelter, etc. That rarely goes wrong. There’s a fear / anxiety system, that helps us deal with threats. And there’s a soothing/contentment system - the one that makes us feel better / happy.
I was well aware of my fear / anxiety system, but the idea that I had a soothing/contentment system was news to me. But sometimes, for reasons in the past, some of us find ourselves in the situation where that soothing / contentment system doesn’t work very well. So this therapy approach, called Compassion Focused Therapy, is about two things: firstly learning how to activate that system, and secondly, learning to recognise when you’re “using the wrong app”, relying on your fear /anxiety system when actually that soothing / contentment system would help you more.
My psychologist explained it was a new approach, but had proven effective, and in particular, it was proving effective with patients like me - the ones who said that all the conventional stuff they’d tried didn’t make them feel any better.
Conventional therapies would say things like “If you’re finding it hard to walk to the bus stop then start by walking 20 yards, then 40 yards and gently increasing the distance”. Compassion focussed therapy would say start by activating the soothing / contentment system. It’s really hard to talk about how you do that without sounding a bit stupid, particularly to people who have got a pretty good soothing / contentment system anyway. But it sounds like you don’t know how to use that system, and if that’s right, this is the booklet for you, which explains the theory, gives examples, and gives the exercises.
http://www.compassionatemind.co.uk/downloads/training_materials/3.%20Clinical_patient_handout.pdf
I was actually quite terrified when it was explained to me. This wasn’t just about my MS, this was about the whole me - would I still be the same person after trying it? I’m happy to report that I was, in fact I felt a better sense of who I am and have a lot more confidence in me.
I really hope you do give it a try and stick with it for a few weeks, really giving the exercises a go. It doesn’t sound like you’ve got much else to do, your english is good, and it’s free - the booklet is really all you need. Some of the exercises won’t work at all, some of them will. I didn’t notice much difference in the first few weeks - but I did get around to putting up some coathooks I’d been meaning to do for 12 months, so that was progress. I stuck with it and spent a couple of months on it. I found compassionate letter writing a really hard thing to do, but trying to write a letter to myself without giving advice was the most worthwhile thing I’ve done. Now I can get into that state of mind more easily and I can kind of think about problems better, and often end up amazed by how I turn things on their head.
2 years have gone by and I still catch myself “using the wrong app” - but the thing is I catch myself doing it, and can turn the “right” one on. Since then my walking has gotten much worse, I’ve lost the use of my right hand, my husband has had severe clinical depression. Things haven’t been easy at all, and I have times when I get frustrated and fed up. But I now feel like I have the tools to help me feel happy overall.
Good luck!
But be positive. We’re all here for you. Take care, Andy.
