Thursday, 24 May 2012

Tired of being tired

Am I taking three steps forward and two steps back, two steps forward and three steps back or am I actually not going anywhere at all? I'd like to think I am gradually seeing progress but at times I feel so shit it's hard to believe it.

The good news is, I have had some treatment for the genetic disorder I was diagnosed with in January and now my tests are showing that my blood is normal at the moment. I'll be getting more treatment in the summer but for now things are OK. The bad news is, I'm still having a lot of symptoms of chronic fatigue syndrome. I knew that fatigue is a symptom of the genetic disorder but I was told that my symptoms were likely to be due also to CFS. I had just hoped the doctors were wrong and that once my blood was back to normal I would feel great. I don't think my doctor could quite understand why I was so disappointed when she felt she was giving me the good news that my blood is now OK.

No, it's not all bad. There has been overall progress. In general, I have more physical energy. I am learning, with the help of New Psychologist (Yes, I'm as surprised as you are: she has actually helped me), the importance of pacing myself and not overdoing things on days where I feel good. I don't always succeed with this. Recently I went to a wedding and Shan came out. She's one of the other parts and is pretty much the polar opposite of me: extroverted, energetic and carefree. The switch lead to three hours solid of dancing... and I'm not talking about swaying from foot to foot to pass yourself. Shan loves the feeling of knowing that people are watching her. She likes the eyes and the expressions of admiration and the comments about her being a real party animal. She knows how to move in a way that looks good, unlike me. She likes the attention. I can't imagine anything worse to be honest. My ideal day at a wedding party would be to be completely invisible. It does amaze me how there can be someone in me who feels so differently than I do.

I was back in control a few times during the evening and while out getting a pint of water to try and replace the gallons I had sweat out on the dance floor, people I didn't even know where making comments. Some guy walked past while I was talking to a girl and said "Now there's a girl who can dance". I'm sure he wondered why I look at him so quizzically, but I was thinking to myself that he must need his eyes tested because I would never put dancing on a list of things I can do. People who know me but obviously only know 'me' were surprised at that side of me. Adam, who was not so much into dancing said that a lot of people were commenting to him how surprised they were at me and some people said it to me: things like "You're crazy Candy" (don't I know it!), ''You're a party animal" and "Are you running on batteries?" Someone also suggested that they thought I might be on drugs. I'm not, by the way. I don't even drink alcohol.

Anyway, I digress. I knew I would pay for Shan's fun the next day and boy did I pay. By seven am I was up puking my guts out and every muscle in my body was aching. I spent the next day alternating between puking and lying on the sofa moaning. It's not fair to suffer for a night out in this way when I don't even drink. I know not one sip of alcohol crossed my lips, even as Shan (Goodness, imagine what she'd be like if she did drink).

So yeah, pacing is important. Thanks New Psychologist for enlightening me about that. It seems so obvious to me now but her analysis of my charts where I recorded fatigue, stress dissociation, pain and what I was doing each hour for two weeks really did show me how badly I have been going wrong with my boom and bust tactics. She has now set me daily goals for maximum amount of time I can do activity for and I am to break things up and take regular breaks. I am not always succeeding, as you can see, but I am seeing that it really does help. It doesn't take away the chronic fatigue but it is helping me manage it. Sometimes there is a benefit to being told what seems obvious.

Tuesday, 1 May 2012

Ideas for therapists: how to prepare us for your leaving

Ahh my precious! (I'm talking to my laptop which is now all fixed up as good as new) It's good to be back on the Internet and I've missed blogging however now that it comes to it I'm feeling overwhelmed at the prospect of trying to catch up my blog with everything I wanted to talk to you about. It's kind of all a blur. In fact, is it actually almost May? It's hard to take in. So I don't know if I'm going to try to systematically relay everything in order. I'll just get started and see where things go...

I guess when people talk about having a breakdown they are talking about the sort of thing I have gone through since the start of the year. I guess, you could say that I had a breakdown. I tend to refer to it as a 'crash'. It has been on the cards for a good while. Like I told the psychiatrist who gently pointed out that I have coped with plenty of stuff in recent years like my parents breaking up, leaving the controlling 'church' I grew up in, being bullied at uni, moving house lots, getting married etc... and asked "what's happened now to make it all go tits up?".. I have been holding on by my finger nails for the past year or so and was using all of my resources just to keep going with a 'normal' life. My psychologist, T's departure in December after being with her for three years was the straw that broke the camel's back.

It feels silly to me that I should be so affected by someone who's only role in my life is as a health professional treating me, the patient. But the relationship between a therapist and client is not like the one you might have with your optician or dentist. It can be allowed to grow to a deeper understanding and can feel like a strong and important bond has developed. I used to think that the way I felt about T was pure and simple transference, where the feelings you have are simply unconscious re-enactments of your feelings about relationships with important people from your childhood. I don't say transference doesn't come into the equation here, however in the months since she has been gone and through the ups and downs of being treated by a new psychologist I have come to realise that it wasn't 'just' that. T is a person and has a personality. I got to know some aspects of her personality, at least and she some of mine/ours. I had grown to be fond of her way and we had developed a way of communicating with each other. I feel we had a respect for each other that was based on our shared time together. I feel we had a real relationship, whether or not it was confined to her office for an hour a week. I believe no one could ever replace the bond we have built and that she will always hold an important place in my heart for the rest of my life.

Perhaps for people with Dissociative Identity Disorder especially, it cannot be underestimated how big an impact the departure of a therapist can be for the patient. I'm sure all good therapists know that it could be difficult, but do they really know? To be hurt as an infant or young child by people who are closest to you can feel like an abandonment so overwhelming that you must split the hurt from your consciousness into another functioning part of your personality. You soon learn that the people who love you, hurt you. You learn to be wary and not get too attached to people. You may grow up with motto's in your mind like 'trust no one' and 'people will always hurt you if you let them get too close'. The you go along to therapy and go through a painful and slow process of learning to trust someone with small things, then bigger things, all the while waiting for the 'inevitable' hurt that will come with it. Maybe you might even get through that hang up and start to believe that this person won't hurt you after all... and then they tell you they are leaving you. This abandonment is huge and not only painful in itself but brings back the pain of all the other hurts ever experienced.

Is it a coincidence that since T left at the end of December I have struggled so much more than I have in years with flashbacks, intrusive images and nightmares? I doubt it.

I am lucky though; my T should be coming back. God help me if things change and she doesn't because I have been counting down the months until she returns. What I would like to tell you therapists out there is that you may think you understand that your departure is difficult for your patient, but you quite possibly have no idea how hard it will be for them. One thing that didn't happen for me was preparation. Even though I knew that my therapist was going to be going away at some point for over a year before she did, I actually only got a couple of weeks notice when she found out when she was going for sure. This didn't leave much time to do any preparatory work. If you have to leave your clients, for their sake, please prepare them properly. If I can prevent one person from having to go through something like the last four months of my life have been I will be a happy Candy. It's not pretty. I am a high functioning person. I usually hold down a full time job as a health professional and I feel I have determination to more than survive the things that have held me back in life. But I almost didn't make it through January. Please don't take any chances that your patient might just be alright because even if they seem strong and stable, it's going to be really hard.

I would like to think that as a therapist you know much better than I do how to prepare a client for your leaving but just in case you'd like a patient perspective, here are some things that I thought of that might have helped me:

  • As much notice as possible of your departure. This time will be really important to discuss and plan for your departure.
  • Tell your patient the reason you're going. You might think it's none of their business but this was really hard for me: I feel so attached to my T and gain a sense of stability in my everyday life from knowing that she was at work etc. Sometimes it helped me to get out of bed when things were really hard. I'd think 'T will be getting ready for work now too' and that would help inspire me. Some people with DID might also struggle with what's 'real' and not. I know T is real when I know she's at work. Her leaving and not giving me any idea what she'd be doing, not only meant I lost that sense of stability, but also meant I couldn't believe she was real anymore. I had no template for what she might be doing. I also worried that she was really ill and going to die. If you've built up a good relationship, surely they deserve to know at least something.
  • Let them talk to you about how they feel about you going. As much as I love my T, we couldn't really discuss my feelings about her going without her getting defensive. This was extremely difficult for us as we were already hurting and to not be able to talk about it added to that. I guess she may have been having her own struggles with guilt about leaving and this was reflected in her responses. Just try to keep that for your own therapy. Your client needs to be able to talk about their feelings as many times as they want to and your job is to listen and understand, not argue or become defensive.
  • Arrange more support for them to help them cope in the initial weeks after you go. I cope fine usually and therapy once a week is OK for me but after my therapist left I needed more support and this wasn't readily available. My new psychologist did not know or understand me and did not take my requests for support seriously. She couldn't comprehend how badly I was coping. She had no context of what I am usually like. I was having overwhelming thoughts of suicide and another part was trying to follow through with plans to kill my body. This could have been prevented or helped so much better. I also lacerated my wrist and will now have that scar forever. I know I did this (part of me) and I don't blame anyone else for that, but I do believe if things had been better planned and help had been available I wouldn't have gotten to the stage where I felt doing that was my only option. 
  • Be really nice to your patient before you go. OK there's probably a better way of wording that but let me explain: I'm sure I'm not the only person with DID who expects that the person they have become attached to is going to hate them and be angry with them. I was able to leave a psychology session feeling OK but have convinced myself by the next one that my therapist despises me and can't wait to see the back of me. I don't know if she did this on purpose but I felt she showed me more warmth and made me feel more secure about her feelings for me in the last few meetings before she left. This helped me to feel secure that she doesn't hate me and I took a positive image of her with me. This just made things a tiny bit easier at times. It's not crossing boundaries to let your clients know that they are cared for.
  • Phase out and phase in. This is just my opinion: but I certainly would have liked to meet my new psychologist before my old one left. This could have helped me to know what to expect. Maybe phasing out with T could have softened the blow as well.
  • Deal with issues about the patient's information. I found it hard moving to a new therapist who had a tree's worth of paper in my file with information that I don't even know about myself (ie things other parts might have said to my therapist etc). I was now faced with someone I didn't know or trust who immediately knew more about me than I know about myself. I think one simple solution to this would have been to give me a copy of my notes so I'd know exactly what my new psychologist was getting and then I wouldn't have felt so paranoid. There may be reasons why that might not be a good idea though. I never asked for this to happen but I still find the 'not knowing how much new psychologist knows' thing an issue.
  • Make sure the therapist taking over knows important things like what your client's triggers are. The last thing we want is to go to meet a new therapist who says something that is too triggering and causes severe dissociation. I felt it was important that any new person taking over would know what words they can't say and little things that are important to me like 'Candy doesn't like you to walk round behind her' etc.
  • If you are coming back try to give them a good idea as to when. This can be tricky as you might not be sure but I think it's important to give some idea of when you'll be back. 
  • Tell your client that it is going to be difficult. I have had two therapists leave me now. The first time I had no idea that I was going to crash the way I did. I had some naive ideas that his departure was going to be cathartic and that he would somehow take all my problems with him. I didn't know what was coming to me and it was a huge shock to react the way I did. This time round my therapist wisely said that we should take it for granted that it is going to be very difficult. She was right to say this and I think back on that and it helps me to feel less like 'why am I feeling this way?'.
I'm sure there are other things that could help but those are some of my ideas anyway. Maybe I'll write a post about what could help if you're taking over care from another therapist, although if you read my posts from the last few months you'll get a fair idea of the hazards that can come with that job. I hope this has been helpful. I'm not one for exaggerating things but I truly believe that the past four months since my psychologist left have been some of the hardest months I've lived through in my adulthood and I believe that although it was inevitably going to be painful, it could have been made easier.