Fatigue 1, Ellie 0

Can’t concentrate at work today. I feel tired and anxious. Pain is bad too so I came in late.

I don’t know what has brought this on. I feel the need to eat a load of crap. Last night I ate a load of chocolate. Then I always feel sick and hate myself more. I don’t know why I do it.

I have lots of ideas for blog posts but for some reason I’m struggling to get them written. I have nearly finished a post about my book challenge so far, as we have just passed the half way point of 2018! Actually, I have lots of ideas in general and things I need to get done, but I’m finding myself procrastinating instead.

The fatigue is hard today. My body feels heavy, tired and achy. I just want to crawl into bed. Only 3 hours left at work then I can go home to pyjamas, dinner and a pre-football nap!

Love,

Ellie

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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

Fatigue

I’m half way through taking make up off, crying on the bathroom floor.

I am so fed up and angry about this fatigue. It takes over my life. I’m trying to make plans with university friends and I’ve discovered that because of engineering works, my 2 1/2 hour train journey is at least 4. I’m already worrying about how exhausted I will be. I am wondering about not going because of the energy it will take. I always thought sitting on a train doesn’t take much energy, but it’s the getting up early, getting the tube into london, getting the train that take more energy. And even though I’d be sitting there not doing much, it’s not rest, it’s still energy.

I feel so angry because if I wasn’t so tired I would probably still be in a relationship with the person I love. I would be able to do all the outdoorsy stuff he likes to do so I could’ve gone with him. I wouldn’t have to consider the impact of spending a weekend with friends on my energy levels for the next week.

I’m so fed up, so upset about it all. It feels so unfair. I know I am having a bad day because I’m feeling low and exhausted, but it is the reality that I have to consider what I do a lot more carefully.

As I typed a message to my friends I realised what a strain this is to me. I realised that where to others a slower train might be an annoyance, to me right now it feels like a deal breaker, a step too far.

I hate this fatigue. It is a nightmare and there’s no escape. Every morning I battle with myself to get out of bed because I am in pain and I am so unbelievably tired. I don’t know how to deal with this.

I don’t like being so negative but today this is how I feel so there’s no point in pretending to feel positive.

If anyone has any tips or ideas about managing fatigue, I’d be very grateful because right now I am not managing. I am on the path to burning myself out and that is not a good idea.

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

A night feeling “normal”

I went out at the weekend. I drank cocktails and shots. I danced and sang (*ahem* shouted) and got home at 3:30 in the morning. The club was packed and I knew I should feel anxious, but I didn’t (thank you alcohol).

It was weird because that night (until the very end when I got a bit upset and overwhelmed once the alcohol started wearing off), I felt like a “normal” person. For so long I have avoided situations like that, or have tried but have been overcome by anxiety or fatigue. It was nice to be able to do something that most people probably don’t think twice about, but I usually do.

It’s now Wednesday and admittedly I am probably still feeling the effects (because it takes days for my energy levels to recover from things like this. Things I used to take for granted) but it was worth it. It was a good night and I won’t even let the end of it ruin that memory.

On another happy note, I mentioned that I was planning on writing a happy memory about each day to put in a jar, and I am proud to say that’s still going strong. Month one, done, in the jar. I also bought a pretty jar to use (although now that I’ve got it home and put 31 pieces of paper in, I’m pretty sure 365 won’t fit but oh well!)

Jar of memories

Love,

Ellie xx

Shattered

Migraine, sleep and tablets. It goes away but leaves me aching and tired.

Repeat.

Repeat.

Three days in a row plus Work plus CBT and I’m absolutely knackered. Ready to go to bed and it’s 8pm.

I want to write about my physio and my cbt, but today it’s just a quick one to say I’m bloody knackered!

Zzzzzz

This chronic fatigue and chronic migraine thing is no fun! It messes up my plans. Plans of being productive, plans of going out for dinner with a friend, plans of getting my 10,000 steps in! I’ll just try again tomorrow!

Love,

Ellie xx

Back to reality

I went away for a few days with my best friend. We had a nice time and it took my mind off things. But now I’m back to reality… it’s horrible.

I feel lost and lonely and so tired. I am back to work today and it’s the last thing I want to do. Sigh.

People keep telling me things will get better but at the moment it’s all so new and raw. I don’t like reality. I want to stick my head in the sand like an ostrich. Only problem is, I’d have to come up for air eventually…

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

Learning to manage 

I know that chronic illnesses have ups and downs. I know that there will be times when my symptoms are unbearable and times when they are barely noticeable. 

But this weekend it feels like it’s getting worse. I feel like my body has no resilience. I am living weekend to weekend. Yesterday I went for lunch with a friend and we went to the theatre. It was nice. It didn’t involve much walking or physical activity at all, yet I was still knackered when I got home. Yesterday evening my pain got worse than it ever has before. As in the generalised all over achyness as opposed to a specific pain actually caused by something (anyone ever stepped on a plug? Ouch!) 

Today I took my scouts on a hike. It was 6 miles. I am tireddd! When I agreed to do this, it was at a time when my pain wasn’t too bad. Last night I was not sure if i would be able to do it today. Managed to sleep and felt a lot better this morning. Not good, but better than yesterday. 

So I did the hike. I am bloody knackered. I don’t think I’ll do it again next year if things are the same. I’m disappointed. The fear I had last night was this is the beginning of not being able to do things. This is the beginning of limiting my activities, of not being able to do activities that “normal” people can do. That’s scary. It makes me sad. 

So now that I’ve overdone it, it’s time for self care…

I have just been through half of my wardrobe and thrown a load of stuff out, I feel exhilarated. For some reason, despite feeling exhausted, it felt like what I wanted to do. So I did. I am watching some random stuff on YouTube while I did it, just chilling. 

I have put a face mask on and it has dried and now my face looks all funny and shiny. I will peal it off soon 😊 I am about to run a nice bubble bath listening to relaxing music and then I’ll put my pyjamas on. Lovely! 

Hope everyone is having a nice and restful weekend and not overdoing it! 

Love,

Ellie xx