Mental

The local mental health team came around last week. I’d wanted to go up on my anti-depressants, and my GP said she had to refer me to a psychiatrist if I wanted to do that. So I agreed, and the local team came round, to ‘assess’ me. They asked me questions like ‘do you ever hear voices?’ and ‘do you want to harm anyone, or yourself?’ I made a joke about wanting to harm the doctor who did my first operation, but they didn’t laugh. At the end, they made a big fuss about making sure I had the emergency contact number to call if I needed help. I asked, ‘so is this the number I call, if I’m feeling upset and want to talk to someone?’ and they said no, this is the number you call if you’re about to do something (presumably top yourself, or someone else). And I thought to myself, if I were really going to do something like that, I certainly wouldn’t tell anyone! They would stop me, so why would I tell them? It’s ridiculous. As if I would call the helpline and tell them I was about to commit some offence, towards myself, or anyone else. When I was 16 I tried to kill myself, and I certainly didn’t tell anyone about it. If I’d had someone to tell about it, then I wouldn’t have needed to do it! 

Anyway, I heard back from them today, after they had ‘discussed my case’, and they apparently decided I wasn’t seriously depressed enough for them, so they are referring me on to another team, who deals with moderately depressed people. This may take a few weeks, so I may go back and see the private pain psychologist I was seeing before this last op. Who charges a ridiculous amount of money. But I thought, one session might be a good idea. As I’ve not been feeling great these past few days. Last week was brilliant – my pain was better, and I really felt like I was improving. I had a really good 5 days. And then, bam! It went back to how it was before. More pain, less able to do things, much more time having to lie down. And I don’t understand it, I really don’t. What happened to make the pain get worse again? And will the pain get better again? How do I make it get better???

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I thought maybe I should write about my feelings. I am ANGRY!!!!!!! So angry that I am in this situation, that I have to go through this. I am angry at myself – for having that first back operation that started this whole mess. I would give anything to go back in time and not have that operation. I would give anything to not have this pain. To be free. I am not sure I will survive this struggle. Over time, I have just gotten worse and worse. And suddenly I am expected to believe it will get better? That is really hard for me to believe.

I am really sad – I miss my old life. I miss being able to go out and do things (or even stay in and do things!). I miss having a social life. I miss hanging out with friends. I miss going outside, walking places, even going on the tube. I feel so humiliated – that I need help for so many things. I am embarrassed today, because someone is here, cleaning my flat and I am just lying here. I hate myself for getting fatter and not being able to stop eating chocolate. I am resentful of my partner, for being able to go out, for being able to do things – seeing friends, even working – for getting further ahead in his career (his career is the same as mine, which makes it worse). It’s hard for me to hear about what he’s been doing. I am so jealous. I feel like he is doing all these things, while I am just stuck, like a lump on a rock, not doing anything, not getting further in anything, just atrophying. I am angry that all the other people I know are out doing things, working, socializing, doing hobbies, going on holidays, even just being outside for a few minutes. And I am here, stagnating. I am angry that others get to live their lives and I don’t.

I feel so helpless – I don’t know how to get better. I don’t know how to stop the pain. I don’t know when or if it will ever get better and that is what upsets me the most – the not knowing. 

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Defining ourselves

I had a thought yesterday, about whether I would be depressed if I didn’t think I had to fit into a certain mold of what a human ‘should be’. That my problem maybe was not my condition but my definition and expectation of humans. Because if you live in our society, you are taught to think that we all have certain things we should do in life. The main one is ‘working’. Other examples are finding a partner, settling down, having children, going on holiday, all sorts of things, depending on what your culture or social status is. And I find it extremely difficult, being a person who doesn’t ‘do’ anything. Someone who is just at home every day, lying on the sofa, frittering time away by checking emails or watching TV. And that clashes with my idea of what a person should do with their time. I’ve been brought up in a family where striving and ‘success’ are very important. One is judged by one’s profession, right? But other cultures may not have this attitude, that is so prevalent in the West. And certainly other animals don’t have ‘jobs’. They find food when they need it and make nests when they have young, but some animals quite often just lie around, not doing anything. Lions who’ve just eaten can lie around for days. So why is it so difficult for me to accept my own lying around? Maybe because I’m not a lion, but also because I feel a need to belong to the human race and fit in with its criterea. To be a human means to work and have a ‘job’ or ‘career’; this is meant to define us more than anything else (though if you’re a woman, you are often defined more by your relationship status). But perhaps we need to think outside the box more, not let our society define us by such narrow conditions.

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The culprits!

The culprits!

These were the screws taken out during my most recent operation, plus the rod that went through them. Much bigger than I thought they would be, glad they are out!

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How to keep calm and carry on?!

I had a good day yesterday – the pain was better, I did more, I even ventured outside briefly to see the sunshine. I was happy, believing that things indeed were getting better. Today, however, I felt much worse. The pain was bad, and I couldn’t even think about going outside, or doing anything that wasn’t absolutely necessary. The result? Extreme depression and hopelessness. I could remember that the day before was good, and that I’d felt hope, but I couldn’t understand how to reach out to that hope and get it back. It was all doom and gloom and all I could think about was my terror that the rest of my life would be like this, in pain, suffering and trapped in my home. I’d love to know if anyone else has gone through this and found any ways of getting themselves out of this particular hole? I am on anti-depressants, but I find that when the pain gets worse, I get more depressed! To me, this seems quite rational. But perhaps other, less depressive types would not get depressed by a bad day, they might just feel a little frustrated. Lucky them! I wonder sometimes, if I had been more of a positive person in the beginning of my back saga, would I have gotten better quickly? Was it all the anxiousness and worry and depression that made the pain get worse and carry on for so long? I wonder, though I think I need to stop blaming myself – as I still do for submitting myself to the first operation that made everything so, so much worse….  I have tried meditation, which is great, though I find it hard to do when I’m feeling depressed, as I just start crying and can’t stop. 

Though I did have an amusing thought yesterday: I was thinking to myself that with this depression, how would I even notice that/when the pain was better?! I might be better, but I wouldn’t know it, if I was still feeling so miserable! I think I am getting better, gradually, from this last operation; I just don’t quite want to dare believe that I will be completely cured in the near future. I have been through too many treatments, procedures and practitioners to believe in anyone or anything anymore. I know that depression is extremely common with chronic pain. With me, it feels like I get the more depressed the more pain I have. I know that the chronic pain brigade believe that depression makes pain worse. I am not sure if I believe this, as it seems that the other way around makes more sense, in my experience.

I wonder if people who are depressed without pain have these up and down experiences of their depression, or if theirs is more of a slow-moving, continual depression. Sometimes I feel like I am more like a bipolar in that I have such extremes. What I hate about this is that I seem to have 5 really bad days for every 1 good day. 

I’m not sure if anyone’s listening out there, but thank you. It does help to write about it.

yours for now,

tritone

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I’ve just had my 3rd back operation in 3 years. I first injured my back, while I was making a frame, leaning over a table for a week, in a really bad position. I had a bulging disc, that a little while later became herniated. Since then, I’ve tried almost all there is to try: physio, acupuncture, osteopathy, medication, yoga, a chiropractor, Alexander technique, Reiki, meditation, a pain management program, epidural injections, a denervation, and finally… surgery. Impatient as I was, and desperate to get back to my career, I decided, after 2 years of trying everything else, to have back surgery. Back then, I didn’t realize how unpredictable back surgery is. I had no idea. I went to 4 different surgeons, finally finding one who seemed sympathetic enough to offer me an operation. The only problem was, he made me choose between 2 different operations: a disc replacement and a decompression (sometimes called discectomy). As I realize in hindsight, a good surgeon will not make the patient choose between operations; he or she will give an opinion about the best course of action and never, never offer an operation that he or she doesn’t think will help the patient. I opted for the decompression, as it sounded easier, but it turned out to be the wrong choice. The surgeon made a damaged disc even more damaged, by cutting into it and removing even more disc material. After the operation, I couldn’t sit, stand or walk without pain, which increased the longer I put any pressure on it. After another 2 years of trying a myriad of other options, I finally went under the knife again; this time, a double fusion of L4/5 and L5/S1. As my fusion strengthened, my pain just got worse. I was sent to a psychiatrist, to see if the pain was in my head. The psychiatrist said I was clinically depressed because of my situation, but that this was a reasonable response to not being able to work, see friends, or go outside my flat. I had to lie down on the floor of the psychiatrist’s office, as by this point I couldn’t sit or stand for more than 2-3 minutes at a time. Soon after this, my surgeon discovered that the head of one of the screws that he’d used in the fusion operation was hitting my iliac bone. So he suggested another operation to remove the screw, which I had 3 weeks ago. While he was operating, the surgeon discovered an indentation in the bone and lots of scar tissue and inflammatory tissue around the area. He removed the culprit screw, as well as 2 other screws and the rod that held them all together. Now I am waiting for the pain to resolve, but finding it extremely frustrating, as the pain is still there, and of course, worse than usual, due to the operation.

During my many explorations of ways to help my pain, I came across many pain consultants, including pain physios and pain psychologists. Many of them thought that I had ‘chronic pain’ which is when your body keeps sending pain signals even after the thing that has caused the pain has disappeared. The nerves become over-sensitized and can sometimes send signals to the brain when they shouldn’t, and even just a little pressure can be read by the brain as a pain signal. When I went on the pain management program, the people running it kept trying to convince me I had chronic pain, but I didn’t believe them; I thought my pain was from something actually wrong. After the fusion, I had almost come to believe that they had been right all along. But after the screw diagnosis, I was confused: perhaps there actually was a ‘real’ cause for my pain all along? I honestly don’t know anymore. For me, the pain is the same as it was ever since the discogram I had in January 2011, before the fusion. This pain never left. It’s possible there have been new things causing the pain, but the pain signals are travelling down the same pathways as before, therefore feel the same. I don’t know. All I know is that it still hurts and I am still trapped at home, unable to go out, and dependent on others to get my shopping, and cook meals. My mental state is not good, after being in pain for so long, and I find it hard to feel hopeful, while I see no change, as of yet.

I thought it might be a good idea to start a blog about my coping strategies and about my thoughts and feelings, while going through this, in the hope of helping someone else out there in a similar predicament. Stuck at home, in constant pain, mostly isolated from others and not sure when the pain will cease. This is a hard thing to go through! There must be ways of coping that I haven’t thought of, or ways to connect with others that don’t involve making my pain worse (ie going out). Perhaps between us, we can come up with a toolkit for survival in such a situation. Please feel free to post, with your own stories, or ideas or suggestions.

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