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.