A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Thursday, 22 March 2012

Catch up

It's way over time since I blogged.  Sorry about that, but here I am now.  Since I was last here I think I've got used to the idea of being discharged from the mental health services ... sort of, though I still haven't heard anything from health psychology.  Next week will be the four week marker since my GP said he'd refer me, so I guess if I haven't heard anything by then it might be an idea to get back to my GP and ask if he can chase it up, seeing as he'd said I should hear within four weeks.

I've been somewhat distracted from all the mental health stuff recently, which is probably no bad thing, except that the distraction has been carpal tunnel syndrome surgery on my left hand.  You may remember that I had the same surgery on the right hand at the beginning of December, which has pretty much healed now.  I can still feel some stiffness in the area of the surgery and some slightly altered sensation around the scar, but mostly it's pretty good and the scar is hardly visible.  I had the same operation done on the left hand last Thursday (15th March).  I had to be at the hospital for 8am so W, who was going to be looking after me in the immediate aftermath, came to stay on the Wednesday night.  We actually had a really lovely evening as we went for an early pizza at the Italian restaurant down the road - Vincenzo's (used to be called Peppy's) - before going to Northern Stage to see the comedian Chris Addison, who was very funny.  It was just what I needed to take my mind of the next day's surgery :o)

All went well with the surgery, although I had to wait until the end of the operating list because of being MRSA positive, so I didn't actually go down to theatre until just after midday.  However, I was back on the ward by 12.50pm and we were back home by 2pm!

As was the case when I had the surgery on my right hand, I've had quite a lot of pain, but I've mostly kept it under control with paracetamol, codeine, and nefopam.  Today has been the first day without the sling, and it's been great to have a bit more freedom, although my hand and arm have been quite achy.

So anyway, W was brilliant and looked after me wonderfully all day Thursday and she stayed until Friday evening.  My mum then came from Friday evening until Tuesday afternoon, and it was so lovely to spend some quality time with her while I'm not in hospital.  It was also very lovely to have her here on Mothering Sunday :o)  My dad came round for lunch on the Saturday as well, which was also very lovely.  Mum had made roasted red pepper and sweet potato soup, cheese scones, and courgette and cheese muffins, which were all delicious :o)  After we'd enjoyed the little feast the three of us went for a walk/trundle in one of the local parks, then came back for a cup of tea before Mum took Dad back home.  My parents split up when I was nine years old, and for many years they had a volatile relationship after that.  Lovely times with both my parents (especially just with the three of us) have been a rarity in my life, and it may well be something like thirty years since I've had such a lovely time with them on my own as I had on Saturday.  It felt special somehow.  My parents have known each other since they were sixteen years old, and I think they both enjoyed talking about those young days together...

I hope we can all do it again sometime.

Mum and I had been going to go out to a National Trust place on Sunday - to Gibside - but Mum had also wanted to catch up with one of her friends and the only time this friend could manage was sometime on Sunday afternoon.  Still, we went for a walk/trundle in the park and had a nice time together.  And on Monday evening we went to a talk at the university by Tess Gallagher, which was very interesting and good fun too.

During her stay here Mum did a lot of crochet, using one of two books that I gave her for Christmas.  She's been teaching herself and has learnt a lot in such a short time.  She's making various tray-cloths etc at the moment while she teaches herself and practises new stitches/patterns.  They're amazing, and she makes them so quickly.  It made me want to get on with some more cross-stitch.  I ended up buying several online, which were all delivered while Mum was here, and now I'm desperate to be getting on with them.  It's difficult with only one fully-functional hand, but I think I'm going to be giving it a go and seeing how I get on.  I'm impatient!

Mum went home on Tuesday and I'm missing her already.  It won't be long till I see her again though, as I'm going up to Edinburgh in a couple of weeks time for Easter :o)  I booked my train at the beginning of last week and J, my step-dad, has booked the ramp for me to be able to get into their house, so we're all set :o)

Things are still in progress regarding my grant application to Motability.  I've had a couple of phone calls from them, so I know they're considering my application, and I'm hoping that I might hear from them with an answer sometime next week.  I'll let you know when I know.

Well that's about it for now.  A bit of a catch up post.

Sunday, 11 March 2012


I've now had a chance to process my discharge appointment with the psychiatrist, and I suppose it went okay. It was amicable enough, which I'm pleased about because I am actually grateful for all that Dr T has done for me, and I do actually like her as a person even though I've felt let down by her in recent times. I didn't say to Dr T how surprised I've been by the rapid discharge, especially after explicitly saying in my letter to her that I was having a tough time, but I did say that I felt that 'low priority' had come to mean 'no priority'. She agreed that it had. I suppose it's good that she acknowledged that, but slightly shocking too.

Dr T spent some time talking about the pressures on the mental health services and some of the changes in the psychiatric services, in which it seems that it's only those with schizophrenia or bipolar disorder who remain under long-term care of a psychiatrist. Others, it seems, are given short-term intervention (perhaps as little as six sessions), discharged back to their primary care team, and readmitted to the psych services when they relapse. I said that I think this 'wait for them to relapse' approach was rather dangerous, and I find it somewhat alarming, although sadly not very surprising as my experiences with the mental health services over the years have been very erratic and, at times, very unsatisfactory. To be fair to Dr T, she didn't seem to think it was necessarily the best approach, but as one doctor in a faulty system she can't do anything about it.

Regarding my own situation, well ... I'm on my own now. No, not completely on my own, because I have good friends and my GP practice is very good, but for the first time in seventeen years I no longer have input from the psychiatric services and that feels rather odd. Good in some ways, but odd. I know that I have the referral to health psychology in progress, but I haven't yet heard anything about that, but then it's only 12 days since my GP said he'd refer me. Dr T said she thinks that health psychology is what I could probably do with, and I told her about the referral. She was pleased. I still feel that she should have instigated this referral herself and most definitely that she ought to have ensured that the support was in place before she'd discharged me, but I didn't say any of that. Perhaps I ought to have done. I suppose that one of the things that stopped me was that I was again rather shocked by her wishing me luck in finding 'appropriate support' for myself. I do think that should have been in her remit as my psychiatrist. She even said that I might need to be persistent and that it could take some energy to find the appropriate support. Where does she expect me to get this energy? How does she expect me to know where to go to push for the appropriate support? Sure, I can go to my GP, but what if they don't get anywhere themselves? It's all very strange.

When I came out of the appointment I felt ... I dunno, deflated ... a bit scared ... oddly liberated ... like a grown-up. That sounds very strange, doesn't it, but when you think about it, I've had input from a psychiatrist since I was twenty, which is barely adulthood. Having said that, the input has sometimes been more detrimental than helpful, and it's certainly been very erratic. I've lost count of how many psychiatrists have passed through the acute services here, but it must be something like fifteen in seventeen years. The shortest length of time I remember one psychiatrist staying was one week! There is no stability in the services, and that can be - and has been to me at times - detrimental to the well-being of the patients. So I guess this is another good reason for me to be out of it now.

Dr T had a student in with her. She did ask if that was okay and I consented because I have a general ethos that medical students need every opportunity to learn. However, I don't think I actually did myself any favours on this occasion. I didn't hold back from saying anything because the student was with us, but it does change the dynamics of any consultation and I really could have done with having the final meeting with my psychiatrist on my own with her. In some ways I'm annoyed with myself for agreeing to the student being present, but in someways I'm also annoyed with Dr T for not thinking that it might be important for me to have that final discharge appointment alone with her. It surprises me that a psychiatrist can appear to be lacking such insight ... but maybe it shouldn't...

You may have gathered that I'm still feeling rather confused by the whole thing. I don't know what my GP will think of it either, but I suspect that they'll all be surprised. They, after all, are the ones who would have to deal with any fall-out, and they are the ones who dealt with me during so many dreadful times of crisis in the past. Of course, I sincerely hope that I never ever end up in that awful situation again, but even though I've been depression-free for nine years, I still don't fully trust it. And I suppose that's the crux of my apprehension about being discharged from the psych services - fear that they'll be nobody to catch me if I fall...

I guess now is the time that find out if I've learnt to fly.

Monday, 5 March 2012

In correspondence

On Friday I got a letter from my psychiatrist in response to the letter I'd written her.  I was actually quite surprised to hear back from her, and in some respects surprised by her response.

In my letter I had told her about how stressful I've found the time since my last appointment with her in respects to my physical health, and went into some detail about the various admissions that I've had since the beginning of October.  I also told her that I was finding things quite difficult at the moment and had been relying upon the appointment with her that she cancelled, and that I was unhappy about having to wait until 21st March for a replacement appointment.  I reminded her that she'd originally said she'd see me every six weeks and pointed out that times between appointments have gradually lengthened and lengthened until the most recent gap would, after the latest cancellation, make it five and a half months.  I did say that perhaps I don't need to be seen as often as six weekly, and that I know I'm low priority as I haven't been mentally ill (a normal stress response to life threatening situations isn't mental illness) for many years now.  The latter is fantastic and I feel very privileged to have regained my mental health after so many years of such terrible depression, but the psychiatrist had said that she would try to fill the gap left by the lack of any other support for people in my situation.  The gap isn't being filled though and I thought she ought to know that.

In the letter I got in response to mine, one of the things the psychiatrist says is that my expectations of what she can provide are too high.  This puzzles me as I've only ever expected to receive from her what she said she would provide.  She reiterates that I have shown no signs of mental illness whilst I've been under her care and am therefore low priority, which is fair enough, but I do feel that 'low priority' should not come to mean 'no priority'.  I had said in my letter to her that I understood that this recent cancellation was due to an emergency and I understand that emergencies must take priority, but I did also say that this is not the first appointment of mine (by a long way) to be cancelled and that at the moment I do need the support.  She responded by stating again that this emergency needed to be prioritised.

Towards to the end of my letter to the psychiatrist I had said that either the support that had been promised should be provided or, in light of the lack of mental illness, then I ought to be discharged because repeatedly being let down is more stressful than no support at all.  The psychiatrist has opted to discharge me.

I was sincere in what I said about discharge, and in some ways it's very encouraging and very positive that she thinks I'm well enough to be discharged from the psychiatric services.  In other ways it seems like an odd time for her to discharge me, when I've just said that I've been having a stressful time and in need of support...

She says in her letter that she still feels that Health Psychology would be of benefit to me, but she hasn't made any moves towards referring me on to them, and she knows nothing of the referral my GP made to them last week.

I'm a little confused about how I feel about all this.  My discharge appointment with her is at 10.30 tomorrow morning.

Thursday, 1 March 2012


If I'm honest, I'm finding things difficult at the moment.  I still enjoy the things that I do, but I'm so tired and get exhausted so easily, it's difficult to stay as positive as I'd like, perhaps because there's so much more that I'd like to be doing.  It also doesn't help that since coming out of hospital I've had to have yet another course of antibiotics, which have played havoc with my insides, so that's added to the grottiness alongside the beginnings of the infection for which the antibiotics were prescribed.

Then there's the whole new car thing.  It's good that there is the possibility of a new car, and it's good that Taz will be able to go into whatever new car I get, but the fact that I need a car that will take Taz is difficult to get my head around because it signifies another decline in my health.  Yes, I know that it will open up my independence again, and that will undoubtedly be good for my mental health, but I find it hard to think that it's come to this, that I have so little mobility now.  It's not just the asthma, it's the POTS too.  It's the combination of the two.  It's all the other bits of me that are letting me down too, and in combination with the asthma and the POTS.  None of this is what I expected from life...

I've been filling in the forms for a grant from Motability towards the cost of a new car and the powered ramp that I'll be needing.  The forms necessarily make one concentrate on all the things that one can't do, nowhere near as much as DLA forms, but still, the focus is on how your body fails you ... and to some degree, what few prospects you have, I have...  Okay, so I'm hoping to be able to develop my writing, finish writing the book I've started about my experiences of asthma and hospital, get published, but what about all the things in life that I'd hope for ... like family, children.  That is the biggest sadness for me - that I don't have children.  I always imagined, and hoped, that I'd have maybe four children and a loving husband, but instead I have no children and no hint of a relationship.  I might not be the most physically attractive woman on Earth, what with being overweight, but I'm not the ugliest either, and I think I probably have a lot to offer in personality, but the truth is that chronic illness and repeated near-death is not attractive.  That is something I can do nothing about.

There are so many things that I would love to have done and would love to see as possibilities in my future.  So many things that there's no way I'll do.  The impact on my life of the asthma and everything else has been enormous ... devastating in some respects, even though it's given me different opportunities as a result of having lost the chance of some many other opportunities.  It's tough.  Most of the time I get on with it, and I appreciate all the things I can do and all the things that I do have, but sometimes the reality of the losses hits hard.

Some time ago now I asked for a referral to the health psychologist attached to the difficult asthma clinic run by my consultant so that I could have some support for the impact that the asthma has had on my life.  After a long wait I had the assessment meeting, which I had to go to from the ward as I was an in-patient at the time.  I wasn't feeling great either physically or emotionally, but as I knew that I'd have the rest of the admission to get through, I had to hold myself together to a certain extent, which perhaps didn't do me any favours.

A lot of years ago now I suffered from terrible, debilitating depression, and for nine years of that time I saw a clincial psychologist from the health psychology department.  L was incredibly patient with me and a fantastic support, seeing me through the worst depression of my life, and ultimately all the way through the other side of it.  I had come through a lot, somewhat unexpectedly.  But the things that caused that terrible, awful, horrendous depression weren't the things of chronic illness.  Unfortunately, the health psychologist attached to the difficult asthma clinic didn't recognise that.  She had read my notes from all those years ago and saw how far I'd come, without any acknowledgement of how my physical health has deteriorated since then, so I got a verbal pat on the back for having come so far and sent on my way with no offer of support.  It was far from satisfactory, and it also surprised both my GP and my psychiatrist.  The psychiatrist has said that I don't really need the psychiatric services any more as my mental health is generally good these days, and has been so since 2003, but she has also said that as there doesn't seem to be anybody else who is willing/able to give me the support I need to cope with repeated life-threatening asthma attacks, and all the other health problems I have, then she will continue to see me.  At first she had said that she'd see me every six weeks, but gradually that support has waned and it is now four and a half months since I last saw her.  I was supposed to have an appointment with her on Monday last week, but she cancelled on me, and not for the first time.  The replacement appointment isn't until the middle-end of March, and to be honest I don't feel very supported by her at all any more.  I wrote to her last week expressing my dissatisfaction, but I don't suppose I'll hear anything from her before the rescheduled appointment.

I had to go to see my GP on Monday.  I told him about the cancelled the psychiatrist appointment, and I also mentioned, almost in passing, that I'm feeling a bit low at the moment, finding the chronic ill-health difficult, and the impact it's had/having on my life tough.  He asked if I'd ever seen a clinical psychologist from the health psychology department so I told him about my years of seeing L, and I told him about the assessment by the health psychologist at the difficult asthma clinic.  He immediately suggested a referral back to health psychology, but to the department rather than to the difficult asthma clinic.  I agreed that it might be helpful, although I'm a little nervous that I might end up seeing the person who I saw at the difficult asthma clinic and who was a great deal less than helpful on that occasion.  The GP - Dr Cg - said it'd probably be about a four week wait and asked me if that would be okay.  I thought it would be okay, but he said that if I changed my mind and I needed to be seen sooner then I should get back to him and he'd speed things up for me.  I am so lucky to have such great GPs.  There are five or six GPs at the surgery I go to and I have complete confidence in all of them.  Anyway, I'm now waiting for that referral to come through and to receive an appointment in the post.  For all that I'm reluctant in some ways to go back to therapy, I think that perhaps I need something at the moment.  I am struggling a bit and I know that I can't afford to let it get anywhere close to depression, so I suppose the first step in managing it is realising that I need more professional support than I'm currently getting and to accept that support now that the opportunity has been offered.  Who knows what will happen at the assessment appointment, but I need to make it clear to whoever I see that the issues I have now are very different from those I dealt with when I saw L nine years ago.  This is about now and the future.