Those bloody forms

As with any NHS funded CBT, I had to fill in my favourite forms ever* on the first, middle and last sessions. The PHQ9 and GAD7 (AKA those bloody forms) are measures for depression and anxiety respectively.

The scores are used to determine the severity of the condition, the cut offs appear to be up for dispute, but these are the scores they went off:

PHQ9 (depression)

0-4 none

5-9 mild

10-14 moderate

15-19 moderately severe

20-27 severe

GAD7 (anxiety)

0-4 none

5-9 mild

10-14 moderate

15+ severe

When I started, my scores were 18 (PHQ-9) and 13 (GAD-7), on the middle session 17 and 13, but by the last one they were 10 and 9. I know they are just numbers but I don’t think I’ve ever scored so low on them! And, even better, I think the scores decreasing actually matches how I really feel – a lot better!

I think my baseline is probably higher than the average person. So most people (without anxiety or depression) would score 0-5 on both as their baseline, but I actually think that even if things were amazing, I would never score below about 6-7 in either test. I am an anxious person and probably always will be, part of that is my personality. Likewise with depression, I tend to be a bit pessimistic and I am hard on myself and always have been, that’s part of who I am. I’m ok with that though, as long as my depression and anxiety are at manageable levels, it really doesn’t matter that I’m never going to score 0 on those bloody forms!

So I’m pretty pleased that according to my scores on that day, my depression has gone from the high end of moderately severe to the low end of moderate, and my anxiety has gone from the high end of moderate to mild.

Progress is good. I know the numbers aren’t reliable, for example when I completed the questionnaire the first time, I wasn’t entirely honest on the PHQ-9 and my actual score would probably have been 20+, but as an indicator, they are useful.

Love,

Ellie xx

*in case tone can’t be inferred here, this is definitely sarcasm!

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Reflecting on CBT

I had my last session of CBT for fatigue this week. We were only allowed 8 sessions, but they have been quite spread out.

I found it really useful in some ways, but in others I am still dubious about using CBT to manage fatigue.

I am definitely more aware of how my fatigue, pain and mood are linked together. I have known for a long time that pain and fatigue cause my mood to be lower, but I came to the realisation that also my mood affects my pain and fatigue.

We looked at the “boom and bust” cycle, which is evident from my activity diaries. This is how it goes: I feel ok, so I make lots of plans and make myself busy (boom) but then it becomes too much, and I feel like I can’t cope, so I stop everything (bust). Then when I start to feel better, I start over committing to things to make up for my (perceived) failure, and so on and so forth…

Being aware of that cycle actually really helps. Even though that’s simple and anyone could see it, now I really understand it. It helps me understand my fatigue and also understand my needs. So now, when I’m feeling good and like I want to make LOADS of plans, I try to be more balanced. So, if I know I have a busy week, I try to leave the weekend relatively empty, or if I have a busy weekend, I make sure I have some weekends without plans. The ideal seems to be having plans on one day at the weekend and not the other, but that’s not always possible.

I think I feel more in control of my life than I did before. Now I am more aware of how certain things will affect me, I can sometimes control some of those things. I know that I will still make the same mistakes sometimes (hard to unlearn a life of constant busy-ness!) but I feel more in control and that makes me feel more positive about things.

The CBT helped me to change the way I think about things, and reminded me of the skills I learned before when I had CBT. I still find the thought traps really useful, I’m a big offender where they are concerned. It’s funny (in a weird way) that I have all these issues with anxiety and depression, because I spend a hell of a lot of time giving my clients advice and support for the very same issues I have myself.

Has anyone else had CBT for fatigue? (Or anything else actually?) How did you find it?

I’m planning to write several more posts on more specific things we covered in my sessions. I am feeling in a writing mood at the moment so I have lots of ideas for posts, just need to write them!

Love,

Ellie xx

It’s the small things

This week has been hard in terms of fatigue. Yesterday I went into london for my CBT session and afterwards went to see a friend. I had some time to kill so walked through one of the little parks/gardens you find in random squares in london.

It was sunny and the way the sun lit up the flowers made me smile. It’s the small things that make life good.

Seeing these pretty flowers springing up out of the dirt was a nice reminder that beauty can grow where you least expect it.

Love,

Ellie

Hello anxiety

Today I had to go to a presentation evening because I achieved an award through scouts. I was dreading it. It turned out to be so much worse than I expected.

Even though I knew most of the people in the room, I felt so anxious. Knowing I had to stand up in front of people and answer questions was anxiety provoking. Waiting for that moment was agonising.

I got through it. I found the whole experience incredibly awkward and was literally shaking, but I got through it.

Then someone came up to me and started criticising the way I run my cub pack. Because of my already high levels of anxiety, it really got to me. Instead of being angry, I was quiet. When she had gone I basically had a melt down in a cupboard. Tears and panic. And then I couldn’t stop crying. It really got to me. Cupboards seem to be my new place for panic attacks. Oh dear!

Now that it’s over and several hours later I have stopped shaking and crying (although my eyes still feel like they’ve been crying – you know when they feel dry and sting a bit?) I am feeling quite angry about the situation. I don’t really know why this person was there, and I don’t know why they thought that an award presentation was the best place to make me feel like crap, but for some reason it happened.

It really pressed my “not good enough” buttons. I worry that I am not a good cub leader. I know that I don’t manage to do everything all the time, but that’s because I have a full time job and a life outside of scouts that I have to fit in too. Obviously the last few months has been bloody awful for me, and I’m very aware that I haven’t been on top form in organising things.

Anxiety levels were really high this evening. It’s really sad because I had been feeling better than I have for ages this weekend until that. My parents said not to let her ruin it, but it’s really tainted the evening.

I kind of forgot how physical and how consuming my anxiety can be. I sat throughout the presentations shaking and feeling really on edge. I was unbelievably warm (not helped by the heater directly behind me!) All I could think was “I can’t wait for this to be over”, so I didn’t really get to enjoy it at all. When I had to stand up and answer questions it was really hard. I struggled to answer questions and when asked to say a simple sentence in german (it was relevant honest!), I couldn’t even do that, embarrassing!

Take home message – anxiety is still definitely something I need to work on. And the whole “not good enough” fear comes up in more contexts than I had realised. At least I can reflect on this now, and this is definitely an example I will mention to my CBT therapist this week.

Time for bed now, and hopefully tomorrow will be a less anxious day!

Love,

Ellie xx

Intrusive thoughts and distractions

Trigger warning: this post talks about vomiting, self-harm and suicidal thoughts.

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This is a hard post to write because I haven’t said (or typed) this to anyone.

I think intrusive thoughts are quite common in many different mental health conditions, but lately I’ve been experiencing a new one.

Every time I eat, I can’t stop thinking about making myself throw up. I haven’t acted on the thoughts but it feels like it’s getting stronger. I know that it can quite easily become addictive, a form of self-harm I guess.

It seems like a strange thing to worry about because I haven’t actually done it but sometimes intrusive thoughts become so intrusive that you end up acting on them.

I am still experiencing quite strong urges to cut myself at times. I haven’t acted on those thoughts since NYE, but the scars on my leg remind me every day. Actually it’s probably the scars on my leg that have stopped me. I remember how fleeting the relief was, and how guilty and bad I felt afterwards, and then I do something, anything to distract myself.

That’s how I’m currently managing the thoughts about making myself sick. The problem is that every time I eat I feel sick at the moment. I am struggling to eat properly, and then sometimes I just eat a load of crap, and then afterwards I feel bad. A lot of distraction is needed.

The more I’m typing this the more I’m concerned about my current relationship with food. Things are particularly bad at the moment as I’m really struggling with managing my wellbeing; I am stressed at work and I am still feeling awful about S, he has a new girlfriend and that is really hard. Every instinct tells me to harm myself in some way, that I don’t deserve to be happy, that I am a bad person, that I am fat.

The intrusive suicidal thoughts are hard too. When I am experiencing that, everywhere I go I see potential methods of suicide. I fixate on how I could end my life, where, when, how. To bring myself down from those, I try to think about my friends and family, all the positives in my life. I say to myself “not today”, and that keeps me safe. Once I am out of that dark place, I can’t imagine how I thought that way, but I slip in and out of these thoughts quite easily.

In CBT last week, I had to fill in THAT BLOODY FORM (PHQ 9 and GAD 7 – measures of depression and anxiety). I put “several days” for the question on “thoughts that you would be better off dead or of harming yourself in some way”, so my therapist asked about it. I was honest and said I sometimes get thoughts about self-harm and Suicide but I don’t have plans to act on them. She looked back at my first form from before Christmas and I had put the same, “several days”, but in reality it should’ve been “nearly every day”. I wasn’t honest on the first one because I was worried I wouldn’t be allowed the CBT. I should probably tell her that next time.

I keep writing these long rambling posts which were not what I intended to write when I first started typing, but it’s probably good to get it out. Anyway, back to the topic – intrusive thoughts and distractions.

I have been managing to avoid the behaviours by distraction. I am getting better at texting friends if I am struggling (not necessarily about how I am feeling) or going downstairs to spend time with my family and dog, and that can help sometimes.

My other favourite distractions are YouTube videos, reading fiction, colouring, my bullet journal and my mindfulness meditation app (I’m up to 155 days in a row!) Another thing that can really help is writing – either in my journal or here on my blog. Sometimes letting it out is the most healing thing.

I hope my ideas might help others a bit. What distractions do you use when you are struggling with intrusive thoughts?

Love,

Ellie

Progress

Progress is in the small things;

It’s getting through a whole CBT session without crying,

Going through a day without thoughts of self harm,

It’s feeling happy, even for a short while,

Remembering what it is like to feel proud of myself,

When the smile is real and there is hope for the future,

Making plans which I genuinely look forward to,

Little by little, step by step:

That’s progress.

Love,

Ellie xx

CBT – core beliefs

I mentioned a while ago that I was going to be having CBT as treatment for my chronic fatigue syndrome/fibromyalgia, and as I am now half way through the treatment, I thought I’d give a bit of an update on it.

At the beginning, we did a pie chart of my problems. Highly featuring were depression and fatigue, and others were migraines, pain and anxiety. It was interesting to get a view of how much each issue was affecting me, and how they all link together.

We have been looking at my core beliefs and rules for living, and have identified my negative core beliefs – “I am not good enough”, “I am unlovable”, and as a result, one of my rules for living is “if I please everyone, it means I am good enough and people will like me”

But the thing is, I can’t please everyone. It’s not physically possible. I know that this is a deep rooted thing, it was probably already there when I met the ex all those years ago. I always had the need to please my parents, hence my preoccupation with getting a first in my degree!

During my relationship with the ex, that rule kept me safe. I knew that not keeping him happy would have consequences so it was important to do so. But then I was with S, and I had the overwhelming need to please him, it made me anxious and it didn’t work. It just ended up with him frustrated that I couldn’t make decisions, and me exhausted from trying to guess what would please him. That rule is not useful to me anymore, now it’s unhelpful and keeps me anxious and stuck.

Being able to identify this kind of thing is really important. I think the CBT has been useful so far, but there’s still a long way to go and only 4 more sessions to do it in.

I plan to write more posts about different aspects of my CBT as I go along. For today, I’m going to get an early night as therapy can be quite tiring. Every time I walk into the room suddenly I can’t stop crying which is exhausting!

Love,

Ellie xx

Safety net

Scared of being alone,

Missing the way you smile

And how you touched my hair

Wanting to be in your arms,

To be in my safe place with you.

Safety has gone now, I miss him. (I just re-read that sentence, when I wrote ‘him’, I meant S, but saying I miss safety and that S was safety to me is just as true.) I am doing ok most of the time but sometimes I get an overwhelming wave of sadness. Today it was while I drove home from work, tears streamed down my face. No trigger, just the feeling of loneliness, emptiness. I know that it is for the best, I would never have ‘grown up’ and taken responsibility for my own wellbeing if he didn’t leave me.

I am trying to take control of my life now; I made a bucket list for 2018, I have started my CBT for fatigue (will write a post on that soon), I am focusing on the amazing friends and family I do have and even reconnecting with some old friends. I am really trying my best but it’s hard because I am terrified that I will always be on my own.

I miss S and our stupid in-jokes and the stupid names we called each other. I miss lying in bed cuddling while we watched a film and feeling safer than I have ever felt. I can’t imagine getting that feeling again.

I am 24 and I know that is young and there’s time to meet someone, I know it doesn’t mean I will be on my own for the rest of my life, but I didn’t plan for this – I couldn’t have planned for this. My plans and expectations for the next few years down the drain – hopes of moving out and buying a property *flush*, hopes of marriage and children *flush* hopes of safety and love *flush*

Seeing other people with long term relationships is hard, I have hit the age where people are starting to move in together/buy a place together or get engaged/married. It just reminds me what I’ve lost and makes me panic that it’s going to be too late for me. I know it’s silly but that’s how my brain goes.

He was my safety net in so many ways, and now he’s not there, free-fall is a terrifying prospect. But what if I don’t fall? What if I can fly instead?

Love,

Ellie xx

In denial? 

Since diagnosis in August, I’ve gone through a whole range of emotions about fibromyalgia… disappointment, anger, depression… but today I want to talk about denial. 

Let me start by saying this is just how I am feeling and does not reflect the situation anyone else is in. I am not in any way saying that people who (like me) are able to function quite well do not have fibro, but I just wanted to write about my concerns about myself. 

I know that I get pain. I know that’s not normal. I know the level of tiredness I experience isn’t normal either. 

But 

(And there’s always a but)

I sometimes feel like (and today is one of those days) I am able to do too much for someone with fibromyalgia. I work full time (and have been working over fulltime since April – left my 2nd job yesterday to go ‘down’ to fulltime) and I manage to do a lot of things like being a scout leader and dog walking. 

Shouldn’t I be stuck at home if I have fibromyalgia? It can’t be “that bad” if I am able to do these things. 

What if it isn’t fibromyalgia and I’m just making a big fuss. 

Everyone else I have come across with fibro has it much worse than me, so what if mine isn’t real? 

I know I have a diagnosis now but today I feel like it’s not valid. 

Tomorrow I have a hospital appointment with the pain and fatigue CBT team, I am interested to see how that goes. 

Feeling a bit funny at the moment. I think part of me wants the diagnosis to be wrong, and part of me just doesn’t feel like my experience is valid enough for the diagnosis… maybe I’m just in denial?

Love,

Ellie xx

In denial? 

Since diagnosis in August, I’ve gone through a whole range of emotions about fibromyalgia… disappointment, anger, depression… but today I want to talk about denial. 

Let me start by saying this is just how I am feeling and does not reflect the situation anyone else is in. I am not in any way saying that people who (like me) are able to function quite well do not have fibro, but I just wanted to write about my concerns about myself. 

I know that I get pain. I know that’s not normal. I know the level of tiredness I experience isn’t normal either. 

But 

(And there’s always a but)

I sometimes feel like (and today is one of those days) I am able to do too much for someone with fibromyalgia. I work full time (and have been working over fulltime since April – left my 2nd job yesterday to go ‘down’ to fulltime) and I manage to do a lot of things like being a scout leader and dog walking. 

Shouldn’t I be stuck at home if I have fibromyalgia? It can’t be “that bad” if I am able to do these things. 

What if it isn’t fibromyalgia and I’m just making a big fuss. 

Everyone else I have come across with fibro has it much worse than me, so what if mine isn’t real? 

I know I have a diagnosis now but today I feel like it’s not valid. 

Tomorrow I have a hospital appointment with the pain and fatigue CBT team, I am interested to see how that goes. 

Feeling a bit funny at the moment. I think part of me wants the diagnosis to be wrong, and part of me just doesn’t feel like my experience is valid enough for the diagnosis… maybe I’m just in denial?

Love,

Ellie xx