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

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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

My hospital appointment 

After ages of trying to convince the GP there is something wrong, a couple of months waiting for a triage appointment and then months of waiting to see the specialist, I finally had my hospital appointment on Tuesday. 

I was anxious as hell. Didn’t sleep well the night before. I was a bundle of nerves. I was wondering what they would say. Would they give me the diagnosis I was expecting and dreading? Would they say oh there’s this test we haven’t done yet, followed by more waiting? Would they say “pull yourself together woman, there’s nothing wrong!”? (Ok I never thought they would say it like that but you know what I mean!) or would it be another red herring like the triage appointment, where I thought it was with the specialist and it turned out to be triage?

I went to the appointment and the doctor was actually very nice. He asked me a whole load of questions, I answered them. Some of them I had answered before at the triage appointment, some were new. Anyway, he listened and wrote down notes. Then he did a physical examination including some prodding which actually really hurt! And then he started talking about treatments, he said they have a CBT group for people with fibromyalgia. I stopped him there and said “so is that what you think it is?” Because he hadn’t said so at that point. 

He said yes, that’s what the diagnosis is. We can call it chronic fatigue syndrome or we can call it fibromyalgia but the treatments are the same for both and he is not too bothered about the diagnosis, more about the individual and the treatment. That was kind of nice to hear and it stopped me from overthinking the diagnosis at the time… I have fibromyalgia. 

So the next thing is to see the CBT therapist that specialises in chronic pain/fatigue conditions and see the physio for an exercise plan. He did not think a half marathon was a good idea, damn – I’m meant to be doing one in spring! 

In one way it was a relief. I have suspected for some time that I might have fibromyalgia but now I have a diagnosis. I am sad that he couldn’t say “oo actually you’re deficient in vitamin X, take this and all your symptoms will go away”, but that was never going to happen. Now I know that there’s a name for what I am experiencing and it is a real condition, this is not just me, and it’s not just in my head. That validates me a little. 

And there’s the other side.. being diagnosed with a condition that I know there is currently no cure for. A chronic health condition which may or may not get worse over time. I need to be careful not to use it as an excuse not to do things, and also be aware of my limits… a fine balance. 

Anyway I am off to sleep now. I’m sure I’ll write on this topic again pretty soon, but wanted to write an update and get it all out of my head. 

Love,

Ellie xxx

On climbing out of a hole

When I tell people how happy I am now, how different things are to how they were last year sometimes they ask me how I did it.

I wish I knew. There’s no magic solution, and to be honest I don’t think I am recovered, but still recovering. It takes time, lots of time.

This post deals with how I personally have dealt with depression and got myself out of the “hole.” This is not medical or professional advice, in fact it’s not even advice – these methods may or may not be helpful for other people, it’s just what I personally have done to help myself recover. Maybe it can help people who are stuck have some hope that things can get better, because they really can. It’s important to have your GP/psychologist/psychiatrist/etc to help support you, and even more importantly;  remember you do not have to do it on your own…

CBT was a big help, I know that. It was painful, and in reality, I have not finished dealing with all of the issues, but I’ve dealt with some things. I’ve learned how to deal with my anxiety differently, I’ve learned how to see my behaviour differently, and sometimes (on a good day) I can cut myself some slack, and say it’s ok not to be perfect. That was a big step.

I have tried 5 different anti-depressants, all at various doses. After 5 with no effect, I thought there wasn’t any anti-depressant that could help. Then the psychiatrist increased the dosage of the 5th medication (lofepramine), just to check and after that things got better. I do not know whether the medication is what helped, or if it was the CBT, or pure coincidence, but I think it was more likely a combination of the CBT and the medication. So my tip is don’t give up, sometimes it takes a lot of different attempts to get it right but trust the doctors, they are trying to help, and maybe it’ll pay off in the end.

And I opened up to people, I didn’t keep it all inside. I told people I was struggling. I asked for help, and I got help. You don’t have to do it on your own, and sometimes talking to people helps… it shows you that they care, and it lets out some of the pain that you are dealing with.

Once I started feeling a bit better, life became easier. My concentration improved and I could work again (a massive help when it came to revision and exam time!) And it has a knock-on effect. When you feel a bit better, you are more open to do things that you might enjoy, and then before you know it, you’re actually smiling because you’re happy instead of that old pretence you’re so used to.

Another thing I did was I started climbing. It doesn’t have to be climbing, anything active is good for you (physically or mentally) or even something that’s not sporty – a hobby, something you can do for fun, preferably something you can improve at. Then you start to see your progress, and see that you can achieve something, you can grasp every victory, even if it’s completing a new level wall or just getting one hold higher. If it’s knitting your first scarf, or even your first stitch… it’s all progress, it’s all an achievement!

Then I moved to Germany. It was make or break time. A whole new life, where there are no memories to hurt me and no one I know. I got the chance to start again. A lot of people won’t have this option, but I’m glad I did. I was so unsure about doing this year abroad but I can now safely say, 6 months in, that it was the best thing I could’ve done for me, for my health, for my happiness. And I’ve been taking every opportunity, making the most of this year… Last week I went on a cabbage tour, despite the fact I don’t like cabbage, and it was fun. I got to talk to the teachers outside school and it was nice. And I found myself telling one of the teachers that I don’t want to go home… a massive difference to the way I thought I’d be dealing with this year. I didn’t think I could do it, I thought it would go slowly, I thought I’d want to go home, but I was wrong. (And I’m so glad about that.)

Today I did the depression questionnaire on the NHS website, the same one I used to fill in every week at CBT and everytime I saw my GP about depression, it is scored out of 27. Today I scored 9, indicating mild depression. What a difference from last time I filled that in… I used to get scores of over 20. Turns out I’ve come quite a long way. But it also shows that even though things are much much better, and a lot of the time I am happy, I can’t just ignore it now.

It’s not just about getting out of the hole, it’s about staying out of it… Because depression has a very high relapse rate, and looking after your mental wellbeing is something everyone should do all the time, not just those suffering from mental illnesses, and expecting that once you’ve “recovered” it’s all over is a big mistake, and one that can lead to a bigger fall. My next post will deal with staying out of the hole (once you’ve climbed out of it.)

The end

It’s done, finished, over.
Today was the end of CBT for me.
It wasn’t a proper session, just a concluding one – questionnaires about the service, reassurance that if I need to come back after my year abroad I can.
Looking at a scale from 0 to 100, where 0 was the worst I felt, where am I now? And where is recovery?
No one feels good all the time so 100 is not recovery, It’s perfection (which doesn’t exist). We settled on 75 as acceptable – as recovery.
And where am I now? It’s hard to say because my mood varies a lot. I think I’m somewhere around 50ish, maybe up to 60 at times. But when I feel low it goes down a lot, not to 0 though, so its still not as bad as it was.
So take 55, and 75 is “recovered”… It’s not that far away.

I know I still have a long way to go and a lot of things to deal with along the way, but I’ve certainly made progress.
The fact that I’ve started some mindfulness shows improvement – mindfulness is not generally used for people who are severely depressed because it involves thinking about the negative thoughts, and would not be easy when someone is that low.
I still have my downs (and ups) but It’s better than a constant down.

Now I feel strange. CBT is done, over. It’s just me fighting my battles now, A has done her bit. I guess I was hoping by the end I would be magically better (100) but it didn’t happen because it doesn’t exist.

I feel kind of empty. Scared, and alone. Now what do I do? What if…

I can’t believe this was the last session, now it’s time to cope on my own.

When things go right & CBT

Things seem to be going right at the moment (not to jinx this!)

Today has been pretty productive:

For my psychology dissertation I am using a computer program to make the experiment (a dot that moves, pictures that come up, and it records reaction time etc.) So today’s first victory was making a dot move across a screen (no, I’m not joking!) It’s not quite right in terms of timing yet, but there’s a dot and it moves so I’m half way there with that bit!

I also had an email back today from my project supervisor, and he has only made a few suggestions for changes on my ethics proposal, meaning that with any luck I will be able to finish it and hand it in early next week (ahead of the deadline on Friday.)

I also had a response back from my old school about doing my research there, using the pupils as research participants, and they said yes!

I also rang work (I will be starting work again once I’m home for summer) and sorted out some hours, and they’ve said I can have a few days off in mid-July so it turns out I probably will get to go away with S afterall! 🙂

This week I have also heard back from my school in Germany and my mentor teacher seems lovely. And she’s sorted out somewhere for me to live for the first few weeks of my stay in Germany, so I will be able to find somewhere for the rest of the year when I get there!

More good news on the Germany front – apparently if you register at a university you can get a card that gives you free travel (bus, tram and train) around the region… this sounds amazing!!

And today was also my CBT. We talked about the progress I’ve made this week – about going out last Friday and Saturday and that I managed to think mindfully that I was safe, and in doing so actually enjoyed my nights! We also spoke about these negative thoughts, the next thing to do is to try and stop them when I identify them. At the moment I seem to have a negative thought (now I become aware of it) but then it turns into a negative spiral and I end up feeling really low, paranoid, sad, lonely (insert other negative emotions here!) SO as I become more aware of these thoughts, hopefully I will start to be able to look at the thought, accept it, but stop it (because it is a thought and not a fact!) and thus not “Put the same DVD on”/”Get on the negative thought train”/go into a massive negative spiral. It sounds so easy when it’s put like this, but in reality it really isn’t. BUT I am determined to continue to make progress even after my CBT is finished.* I have bought a book and CD about mindfulness, (but silly Ellie sent it to London instead of Lancaster so I don’t have it yet) so I will write about that when I get home and start using it. Apparently the book has a mindfulness program that you can follow (I think A said 8 weeks?) so that should be interesting (and hopefully helpful!)

On my way home from CBT, I bought a card and a box of maltesers for my friend (pres**) as it’s her birthday tonight, and I am going to her house later for predrinks (jelly shots? Yes please!) and then out to a bar/pub and our student club. BUT I am being nice to me (yes, really!) and I am saying that I will go to predrinks and the bar/pub but I might not go to the club if I don’t feel like it. I am very tired and have had a lot going on this week, so I will see how I feel later. Quite proud of this development – compromise: I am still not letting down my friend (because I do want to celebrate her birthday with her) but I am not forcing myself to go “out out” if I don’t feel like it later. 

Final good news for today was that I rang a Mental Health Centre where I am going to be doing some volunteering over the summer. Originally they had asked me to do Fridays (as it’s their busiest day) but unfortunately work said they can’t give me Fridays off (because it’s a busy day!) so I was worried about what they would say when I said I can’t do Fridays anymore. But the man (who I met in the easter holidays) was lovely, remembered me, and said it’s fine to do Thursdays. In fact he said Thursdays are the nicest day to be there, so that’s exciting! I will be volunteering at a mental health drop-in centre where people can come and chat, have some tea, do different activities etc., and Thursday is the women only drop-in.

Oh yes, and another good thing! Tomorrow I am off to Warwick to visit one of my best friends – Monkey. That will be great as I haven’t seen her since easter, and Leamington Spa is a really nice place as well!

So I probably won’t be back (on WP) until Monday as I’ll be in Warwick and socialising rather than blogging, but this afternoon’s plan involves a nap and catching up on reading blogs before I go out!

Lots of love,

(from a pretty positive) Ellie xxx

*Next week is the last session with A! Arghhh!

**Not sure if I have mentioned her before. She is called “Pres” as she is the new president of one of the societies at uni.

CBT: Get up and get out!

No don’t worry – these were not words said by my therapist to me (or vice versa.) Yesterday I was feeling pretty down and really didn’t feel like doing anything. But my appointment was at 2pm, so having finally dragged myself up at about 1, I called a taxi and went to my CBT session.

And I’m glad I did, I felt a bit better afterwards. And once you’re up and about, things normally feel a bit better. If I stay in bed hiding all day, what have I achieved? Nothing. But by getting up and out and going to CBT, I have (hopefully) helped myself a bit. So that’s the advice: Get up and get out! 

I was pretty tearful in my CBT session yesterday – the realisation that it’s coming to an end is scaring me. Then I have to cope by myself!! I have 2 more sessions left, then I’m back home in London until September, and then the big move to Germany – eek! The fact that I won’t have A to speak to anymore is a bit scary, especially because I think the CBT is helping, but there’s still a lot that hasn’t been dealt with.

A said there are some things I am still not ready to deal with. She said in the future I will be and then I can have some counselling/therapy to help me deal with it. She said when I get back to Lancaster I can get re-referred if I need to.

A gave me another CD with some guided mindfulness meditations on it. There is one called Mindful sitting practise and one called 3 minute breathing space. I’ll write about these sometime this week when I’ve done them a few times.

We talked about the way the mind works (according to CBT.) We have the situation or event and the emotion/feeling, but inbetween there is the thought which triggers the emotion. So I am working on spotting the thoughts and seeing – is this a fact or a thought? This is of course easier said than done, but it’s work in progress.

We talked about my insecurity and constant fear about S leaving me. This is rational to some extent because my previous experience (with the ex) has shown me that people can leave me. However, this does not mean everyone will leave me, and it does not mean I am not good enough (which is the thought that goes with the event: ex leaving me and the feeling: depressed/lonely/scared.)

A has asked me to write down how I am feeling each half day, and more importantly the negative thoughts that come with the feelings. Then I can look at them and say – fact or thought? Do I have any evidence of this? The chances are, probably not!

The other thing I am meant to look at this week are when I have these thoughts that S is going to leave me. We have established that seeking reassurance doesn’t really help… it may help for a brief moment, but soon afterwards, the thoughts will be back. And I know they must be irritating for S, to constantly reassure me that he’s not going anywhere, he’s not going to hurt me, and yes he does love me. So the aim here is to identify these thoughts and look at them without engaging with them. Using mindfulness, the idea is to see the thoughts as thoughts (and not facts), not engage with them, and ignore them. But baby steps – this week I’ve just got to identify them as early as possible.

A used the analogy of the “thought train”… so once the thought comes into mind, it starts a trail of destruction, with each thought encouraging the next, until I’m in a massive negative spiral and I truly believe that S is going to leave me because I’m just not good enough. So instead of this, I should try to identify the thoughts early and get off the thought train. Another analogy was “putting on the same DVD”, so once you have had the thought (put the DVD on), the same thing happens (the same DVD plays) and it results in the same behaviour and feelings each time. So instead of letting the same thing play out each time, it is better to catch the thought early, and throw away that DVD 😉

Anyway, enough about DVDs and trains… me thinks this is more progress.

Oh – and A said she thinks if I use the mindfulness stuff we are learning and use the book I have bought (The Mindful Way Through Depression), I will be ok in Germany without any therapy. I hope she’s right! But I have my blog too, which I think is therapy in itself!

Don’t want to

I don’t want to do any of this.
Don’t want to eat. Don’t want to get dressed. Don’t want to go to CBT.
I don’t want to socialise and I don’t want to go out tonight. I don’t want to spend the day with my housemates tomorrow, even though its the last day we are all together. I don’t want to do anything at all.
I just want to hide. Can’t I do that instead?

So many tears

Warning: This post makes little or no sense, it’s just me streaming my thoughts into typing, to try and let it out and make sense of it. (Afterwards: And it still doesn’t make sense.)

The last couples of weeks I have been so emotional. In fact it’s getting on for a month now… Before that things seemed to be improving a lot but these days I just seem to be on the edge of tears constantly.

I’m crying because I’m scared, I’m sad, I’m worried… you name it, I’ll cry about it.

I know it must be difficult for S to deal with. I can tell I’m being insecure, irrational, and I’m overreacting a lot, but I can’t seem to stop it. One little thing and I’m off again, wailing like a child.

I’ve always been a “cry baby”. I always remember being that kid at school that cries about everything. I don’t know why, just really over-sensitive?

I wish I could turn all of my emotions down. They are all too extreme. Especially the sad/crying emotions. It makes me angry that I am so pathetic, what is wrong with me? Why can’t I stop crying?

And the more I cry, the more I worry that I’m being difficult, and the more I worry that S is going to get bored of this and leave me. And then I’m scared and ridiculously insecure so I end up being really clingy and then he will get a bit annoyed and I’ll cry (again). He must have the tolerance of a saint to put up with me. I am constantly twisting everything he says and taking things the wrong way – always in the most negative way possible. I am always seeing the worst in myself and blaming myself for everything and I know it must be tiring to have to constantly reassure someone that you’re not going to leave them. If anything, me going on like this probably makes him more likely to leave me…

I’m stuck in a rut and I’m not sure how to get myself out of this one. It’s very difficult to carry on as normal when I’m this emotional. I just want to hide in bed all the time (which is not acceptable.)

At least tomorrow I can have a bit of a lie in. And I have CBT in the afternoon so I can speak to A about this.

I just need to calm down and get a decent night’s sleep and maybe things will look better in the morning? So sick of being constantly on edge and worrying about everything. And all this crying has made me dehydrated so hello migraine (again). It’s all just going round in circles and I know I’m not helping myself. I feel like I have no control and I’m not sure how to fix all of this.

Lots of love,

Ellie xxx

P.S. Forgot to mention… it probably doesn’t help that today is the 13th June. If the ex and I were still together we would have been together for 5 years. And even though we split up over 2 years ago, that thought fills me with dread. Instead of being glad I’m away from him, I torment myself with questions of why I stayed with him, and images of what if he hadn’t left me… I’d probably still be with him being used and abused. (I know this shouldn’t matter, but maybe it still does. But just to clarify – not in a “I-want-him-back” kind of way, not at all!!)