Perching on the Fence – A Plea to the Changing Nature of Illness

In the grand scheme of things it’s not too bad. I am functioning; even enjoying my weekend. I just lost – badly – at Monopoly, and it’s been a laugh. Things are (objectively) good. So why is there this nagging doubt somewhere in the back of my mind that something’s not-quite-right?

I just feel… distant. Removed, remote, unengaged. The feeling abates somewhat when I am engaged with something but when there’s nothing going on it comes back full-force, and it’s uncomfortable. I feel energetic but de-motivated. I kind of want to head to the pub and find a random person to drink and talk with until it’s closing time and I can simply crawl back into bed. Of course, the ‘good’ and ‘responsible’ part of me knows this is pretty unacceptable; this belief in doing the right thing leads to unwarranted guilt and extreme frustration. I want to rebel against my self-imposed rules.

Anxiety is a key feature of this mood that I’m not really sure I can define. I suspect it results from the internal conflict between wanting to do something out-of-the-ordinary and wanting to stay safe/play by the rules. It is unpleasant. I wish I was less conscious of ‘the norm’. On days like today I wish I hadn’t worked so hard on developing insight – if I didn’t have the awareness then I’d have an excuse to simply indulge the part of me that wants to cut loose. As it is, I know that I am potentially going to be a danger to myself if I throw all caution to the wind. But fuck me is it unpleasant to be constantly buzzing with a desire I can’t satisfy.

There’s a hint of the red-flags about this too – those red-flags that we committed to paper a couple of years ago to create a kind of checklist of things to watch out for. Things like voices. Things like Eve. Things that tell me that something’s up. Coping with them is fine; knowing they’re potentially problematic is healthy. One thing I should do is let Luke know all of this; as it happens I am terrified of letting him down so my cheat’s way out is to write this post and communicate with him this way. I am sorry that I am still so hopeless at actually vocalising these things.

Part of me is feeling a little un-supported by any professionals. My time with Early Intervention ended a couple of weeks ago at a handover meeting and I am now under the care of CMHT; I have met my new care co-ordinator once and although I could text him I am both cautious of doing so and unsure that this feeling ‘off’ warrants making contact. On the grand scale of things, on a one-to-ten rating system with ten being my worst point, I am probably around a two. Maybe a three.

And I’m sure – or trying to convince myself, who knows – that this won’t escalate. If I believed in a God I would be praying for a small blip on the radar of health. If I beg the universe with as much positive thought as I can muster, the delusions will stay away, the hallucinations will remain unobtrusive and  Eve will stick to her position of mental-passenger. Please.

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Perching on the Fence – A Plea to the Changing Nature of Illness

3 thoughts on “Perching on the Fence – A Plea to the Changing Nature of Illness

  1. Claire Lane says:

    RIDING YOUR BIKE WITHOUT STABILIZERS

    Hi there I am tip-toeing into the world of social media! I have never replied to anything online (I am a bit out of date on such matters!)

    I stubbled across your wonderful blog around a week ago and think it is fantastic you really do sum up what life can be like living with this condition there have been several things that have resonated with me. I too was with the Surrey EIIP Team and probably with the sound of it the same Dr P! It ended up being for nearly five years in the end so I can appreciate from your post this weekend what it is like in the early days of flying their nest as you are left with this feeling that they held so much information about you and suddenly you need to start trusting yourself and others with your checklist!

    I just wanted to reasurre you that it is simply like riding a bike without stabilisers, you do in fact already know how to ride your bike but once the stabilisers are taken off you just have to remember how to balance on your own. Before you know it, you stop and realise that you have cycled quite a journey down the path on your own without them and not fallen off.

    I was discharged from the team back in December and the things that have been key for me have been to make sure I tell friends and loved ones when they need to step it up a gear on the keeping an eye on me front and also when to step back a bit and give me some space. Keeping up my Mindfulness meditation and yoga, taking a lunch break at work (something my Care Co-Ordinator used to check on and remind me) educating new professionals because lets face it hearing it from the horse’s mouth is better than a few notes they have been given. Most importantly though it is learning to trust yourself and having the self-belief that you will continue to make progress on your recovery journey. I won’t lie there will still be tough days but you will realise how proud of yourself you are when you noticed you pulled yourself out of them without the support of EIIP. I really do believe that they move you on from their care with skills for life to manage your condition and the fact you spotted you are around a two or a three at the moment shows incredible insight. I have found that sharing your knowledge and personal insight with new professionals is key it can be frustrating at times retelling your story but otherwise they are playing catchup if you are not careful. My other tip is to double check that they have a copy of your wonderfully handy checklist. My GP and I have been going solo now for the last nine months and it was only a couple of weeks ago that I realised she had absolutely no paperwork for me. I went armed to see her secretary with all the key bits of paper from my records. Once she had this we both felt more reassured that should she need to refer to it my GP Practice now has it at hand. I pointed out to her that whilst I have always found her very approachable I was concerned that she had only ever seen me well and I needed her to understand what could potentially happen on a day at the opposite end of the scale.

    Keep up the blogging (You are a natural at it), keep talking to the hubbie (He sounds amazingly supportive) but most importantly keep up the self belief that you know your signs but also remember those days that score a two or a three don’t always end in disaster it is only if they continue. It is a bit like the weather they can sometimes change for the better by the next day.

    Liked by 1 person

  2. Hi Claire, welcome to social media – I am honoured you took the time to write such an involved and thoughtful reply to my post.

    It’s great to hear that you have been flying solo successfully for 9 months; that is testament to the hard work you’ve put in to make things better for yourself. Assuming we had the same Dr P you must be missing her support; she was always my knight(ess) in shining armour and worked with me a lot to adjust meds as needed. She never made me feel like I was being too much trouble. You’re so right about how reassuring it is to have a team who are fully up-to-speed with your particular case – your likes, dislikes, what works for you and what doesn’t. I guess I am nervous with the new CC that he will take time to get to know my character; things like my preference for text messages over phone calls etc.

    Your comment has made me truly happy and I really do appreciate the advice given 🙂 You sound like you’ve been practicing how to live with these illnesses and are doing awesome! I will definitely make sure that the new CC has a copy of the checklist and also the crisis contingency plan; I know that’ll make me feel more secure.

    Thank you 🙂 xx

    Liked by 1 person

  3. Claire Lane says:

    Hi Alley,

    No problem at all. I hope things keep moving in the right direction for you.

    You are right The EIIP Team are an amazing group of professionals with outstanding knowledge in their field. Let’s hope their work and influence continues to grow in the field.

    Keep up the blogging!

    Liked by 1 person

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