Ill enough yet not as ill as....

No-one wants to have the worst form of any illness or condition, yet it can be a strange place to have it enough to interfere with life yet being in a much better situation than those you meet on the support forums.

I had this when I had Chronic Fatigue Syndrome (CFS/ME) my life was drastically limited by the exhaustion that is beyond describing, but because I could still have some life and cope with some activities, because I recovered enough for a steady life, I was considered y some as not really having the condition. Those who were left bedbound and light adverse and facing those who want to dismiss their illness as shirking were very defensive against those who had a form of recovery as they felt it undermined the depths of their experiences, and the burden of 'my friend had... and did.... and all fine now'. To be fair I believe that CFS/ME is a mixed bag of things that have related symptoms and as not understood they get lumped together when different things may be going on.

I have now been diagnosed formally with Bipolar affective disorder. This matches what I recognised when I read about it several years ago. I knew I didn't fit the more extreme form and went through various visits to different psychiatrists (a string of junior psychs who are on rotation so next appt I saw a different one). I was told by one that because I was not sleeping around and/or in deep debt then it couldn't be bipolar, yet the extreme form is not the only form and even then the effects vary massively.

It feels good to have the affirmation of a diagnosis - that what I experience is acknowledged. That is powerful, I still remember the GP visit (after months of chaos and even college arranged therapy) when I came home with the label 'clinically depressed' I was not useless I was unwell.

Yet on the online groups for those with bipolar I am on the mild end of the spectrum, and I feel that I don't belong there as a peer. yet I do live with the implications of my own health and when it falls short. It is a strange place to feel that you don't belong with the very ill but  at the same time don't fit with the healthy either.

Of course I am grateful not to face the darkest places that others face day by day,  but to be ill but not ill enough is a strange middle place where you neither belong in one place or the other. On one level my diagnosis is an affirmation of my struggles to those I work and live with and explains why I am like I am. On the other hand I feel a stranger to the world that others with the diagnosis live with, and the support I yearn for is not there as I am in a better place than many.  It is a strange place falling between two stools.

Being heard

Forgive me, it is far to long since my last confession, sorry I mean blog!

Whistle stop tour - Easter, horrible lows, week off on leave, 4 weeks off on sick, June back in action and lots of catch up, in just a few days go to states on minister exchange, with minister from North Carolina coming here in my place. The exchange is for 6 weeks - July and half of August. 

Meanwhile ten days ago I had a return visit to the psychiatry dept. I didn't have great expectations after my last appt at the start of April. Then the junior psychiatrist I was assigned just dismissed aspects of my mood diary that I considered important, and only upped the dose of an antidepressant that I didn't think then, or now, has any impact on me.  She had told me that she would be moving onto another role in her specialist training and that the next time I would see another junior.  

And so I did, but this one was somebody who considered me as a person who knows something about my own experiences and moods. He listened fully, asked the relevant questions, and then came up with a plan.  I have formally been given a tentative diagnosis of Bipolar 2, and a plan for introducing a mod stabiliser. The plan is not to treat the lows or even the highs when they arrive, but to treat the swing between the two and so in time to avoid both.

So how do I feel - relieved, grateful to have been listened to, positive about a new treatment regime that offers something different to what is clearly not working.  Validated that my insight when reading about this last Oct and recognising myself in it is acknowledged by someone whose view is recognised.

The path ahead is not any more certain, but at least someone has a map showing a variety of routes to try and willing to help me work out one that finds a balance between the easiest to travel and the on with the best views of life.  But that is all to come...

In the psychiatrist's chair

So what would it be like, at the mental health centre, for an appointment with a psychiatrist?  Well standard NHS waiting room and then into a room with a desk for her to use writing notes and a few chairs.

It shows the stigma that mental health has in that in every physical medical speciality being referred to the specialist, a consultant and their team, is seen as a positive step forward in getting advanced focussed treatment. A referral to Ear Nose & Throat, or to the Oncologist or....   but try saying in general conversation that you are off to the Psychiatry Dept.   I have tried to be open about mental health in my life and did tell friends I was due to see a psychiatrist - but then found myself referring just to a hospital appt, or that GP had sent me to a specialist.

I was counting down and hopeful - since the autumn and before my referral I came across information on Bipolar 2 where the highs are not as high but the rest is much the same as Bipolar 1. The definition was a close fit and explained various points in my life, including at college before my grand crash down.  I have been on a peer support web forum and listening to others to see if it still felt a fit, it would explain why the anti-depressants have not had the level of effect hoped for over these years.

Ready for the day, with notes of my history of depressed times over the years, a mood diary from Jan 1st with the chart numbers put on a pretty graph, and hopeful.  It has been a long hard winter of depression, I would have gone to the GP to plead for something else, or a change in dose or... but no point when the psych appt on the doorstep - they will be able to offer something, a new approach, new hope.....

And?

A sensible, take it slowly, possibly bipolar stuff going on, too soon for labels, you are coping with life so no meds yet, carry on as before - come back in 6 weeks with more mood diary.  Disappointed.  Although, whether placebo effect of hope anticipated or the pendulum due to swing, I had headed up in mood a day or so before and that is still with me - so will cope for six weeks. Now where did I put that diary and mood chart?