Mental ME

I have depression. I get stuck in a spiral of negative thoughts until I reach the point of wanting to die. It happens often, and has been going on for about a year. A few months ago I asked my GP to refer me to a mental health team for more in-depth help as anti-depressants alone were not working.  My GP wrote to the mental health team asking for help with my suicidal thoughts, and she listed some of my circumstances too – imminent homelessness, massive housing benefit screw-up, and suffering from ME and lots of other diseases.

The three times that I have seen a psychiatrist have been rubbish. I talked about that in a previous blog post. Basically, the psychiatrist focussed on my fatigue and would talk about nothing else. I even said to him “I’ve had M.E. for eleven years and know how to manage it, but I really need to know how to stop the loops of negative thought and the suicidal thoughts.” I was ignored. He decided to treat my fatigue by giving me amitriptyline, which is the first drug used in cases of M.E. even though I have tried many similar drugs over the years to no effect. Amitriptyline caused me to lose two entire weeks because it made me sleep all day every day, so I cut it down and then stopped it.

I went back to my GP to find an alternative to this useless psychiatrist. She gave me a copy of the letter that he had sent to her. Here is what it says:

Diagnosis: Chronic Fatigue Syndrome

Current Mental State/Progress:
Unchanged, symptoms of fatigue.

Risk profile (+Crisis Plan if applicable):
Nil.

There is no mention of the periods of despair, the suicidal thoughts, the risk to myself that my GP had told them about. Just a diagnosis of Chronic Fatigue Syndrome. I have pointed out on this blog many times before that my illness is ME/CFS which is a physical condition. As such, my psychiatrist has no business writing CFS as my diagnosis for my mental health problems because it’s not a mental health problem.

I had a bit of a freak out this morning because I suddenly realised that this psychiatrist will be asked about my condition for my application for Disability Living Allowance. That could be disastrous if he tells them his version of what is wrong with me rather than my official diagnosis of M.E. by the neurologist that I saw years ago. However, after panicking for a few hours I have managed to call the mental health hospital and explain my problem. The manager there was extremely helpful and nice about it. My next appointment there will be with the Consultant Psychiatrist who is in charge rather than the idiot that I have previously seen, and because my DLA claim is imminent I will be called in earlier if there are any cancellations. She has also made a note that they must see me before replying to any letters about my DLA claim.

Hopefully that’s one less thing to worry about. The last thing I need is clueless doctors making my life even more stressful.

A useless doctor

I went to see a psychiatrist today. It was the third time I’ve seen one. I don’t think I’ll be going back.

I asked my GP to refer me for help with my mental health because I have depression that has not responded to anti-depressants. It includes frequent negative thoughts that keep me stuck in a loop for hours and fairly serious thoughts of suicide. I want help to stop getting caught up in these negative thought spirals and regain some control over my mind.

Unfortunately, the doctor that is now in charge of my mental health seems to think that trying to fix my chronic fatigue is more important than stopping me planning my own death. I have M.E. but he always refers to chronic fatigue which is a symptom of M.E. The first time I saw this doctor he focussed entirely on chronic fatigue. He told me that I shouldn’t be taking pregabalin (Lyrica) as “that is for neuropathic pain not chronic fatigue.” He seemed to ignore the fact that I was taking pregabalin because I am suffering from neuropathic pain. He proposed that I take amitriptyline instead as that is normally given for chronic fatigue syndrome. I actually interrupted him to inform him that I had M.E. which is a physical neurological condition of which chronic fatigue is a symptom but he simply acknowledged this and then carried on. I grudgingly decided to try the amitriptyline since it IS normally the first drug given to patients with M.E. – it helps with muscle pain and headaches and better sleep, but it is an anti-depressant and so I thought it might be worth trying again. If it shut the doctor up and it helps me sort the depression too then it might be worth it.

My visit to this doctor today was completely useless. He started by recalling that we “discussed” my chronic fatigue and that he gave me amitriptyline. I informed him that apart from making me sleep all day, every day, and having more suicidal thoughts, it had done nothing at all for me. He then went in to a long winded speech about how pacing works and is good for chronic fatigue. I pointed out that I had been to lots of sessions at an M.E. clinic a few years ago to learn about pacing, that I had had M.E. for eleven years and managed to pace as best I could as the illness got better or worse, and that I knew pacing well enough to write about it for other people. I said “I’ve had M.E. for eleven years and know how to manage it, but I really need to know how to stop the loops of negative thought and the suicidal thoughts.”

I don’t think I could have been clearer, but he carried on, talked about disuse syndrome and said I need to exercise otherwise I will get fatigue caused by doing too little. I told him that my pacing routine includes as much exercise as I can do at any given time. Not to be outdone, he then talked about free radicals, told me to take anti-oxidants and vitamins, and finally blamed my fatigue on my diabetes, which seems to be the only other thing apart from depression that he doesn’t think is his job to treat.

So I’ve been referred for help with mental health, and instead have been told not to take drugs that save me from searing pain, given a drug that put me to sleep all the time, and had the psychiatrist try to treat my M.E. while consistently referring to it as Chronic Fatigue. What I haven’t had is any advice on preventing or getting out of negative thoughts, or stopping me thinking about suicide. It isn’t even relevant whether my M.E. is physical or mental in nature; I desperately need help to regain control of my mind before I hurt myself, and all this doctor cares about is my fatigue.

Stressed

I’m stressed because I have to deal with benefit cock-ups and repaying a massive overpayment. I’m stressed because I need to deal with buying a cooker. I’m stressed because the washing machine won’t fit in the space next to the dishwasher. I’m stressed because we don’t have a shower, only a bath. I’m stressed because it seems impossible to talk to the electricity companies to sort out our meter. I’m stressed because politicians are all attacking the sick and disabled. I’m stressed because the general public thinks everyone on benefits is a cheat and a scrounger. I’m stressed because I can’t keep up with all the campaigning and projects that I want to be involved in.I’m stressed because I have started 16 blog posts that I can’t get inspiration to finish. I’m stressed because I can’t work. I’m stressed because there is no room for my wheelchair in this house. I’m stressed because I am afraid to use the wheelchair because of what other people might think. I’m stressed because I am in pain. I’m stressed because I take too many painkillers. I’m stressed because my wife can’t get a job despite a shortage of science teachers. I’m stressed because I live in a village too far from town. I’m stressed because we haven’t finished unpacking and the house is a tip.

I’m stressed because I am stressed.

Please excuse me, I’m going to curl up in a ball in my bed now.

The story of my mental health

I had tried to write this story in just 250 words for a specific purpose. Since I utterly failed to keep the word count down, I am posting it here instead.

As someone who has suffered for years with ME, migraines and more recently, diabetes, I have been asked if I am depressed more times than I can remember. As my GP said to me a few years a go when I answered that I wasn’t depressed; “Why not?”

In 2008 I moved house and ended up with a new GP. This GP seemed convinced that my ME was actually a mental illness (The world health organisation says it is a physical, neurological illness) and referred me for a mental health assessment. After a nice discussion the psychiatrist assured me that I was sane, and suggested that I find a new GP.

Things changed in 2010 as surgery and flu left me in bed for the second half of the year, leading to an ME relapse at the end of the year. My illness contributed directly to the decline of the family business that I had set up a year previously, and by Christmas I was not only severely ill with my ME but also became suicidal. As I lay in bed on Christmas Eve I came extremely close to going outside in sub-zero temperatures and going to sleep in the snow with no intention of waking up. I did not realise at the time that I was depressed, but my wife did.

Once back home ME kept me in bed solidly for the next six weeks. I hid my depression, but spent much of the time staring at the wall or at twitter as it scrolled past, not thinking at all. Then through talking to people on twitter I realised that I had to do something about my depression. I began to talk about what I was going through. My wife was extremely supportive when she was at home, but I often had bad points when she was out at work or was asleep. At my worst points of despair I received messages of support from my friends online, and it was only those messages which prevented me from trying to kill myself.  Encouraged by my wife and my online friends, I talked to my doctor in March. She was very sympathetic and she started me on anti-depressants. Four weeks later I reported that I had got worse, and changed to a different anti-depressant. Part of the reason for my worsening is that I have been going through some serious problems with my business, housing and benefits. A major contributor to my depression at this point was problems with applying for ESA and filling in the ESA50 form. Since then we have found a house through the local housing association, and I have managed (I think) to sort out my ESA claim with the help of Worcester DIAL.

Another four weeks later and I have switched to a stronger anti-depressant and have been referred for a mental health assessment, which will take place in two weeks time. Altogether it was two weeks from my referral before I received an appointment with the psychiatrist, and four weeks until the appointment, which I don’t think is a terrible waiting time. I was very pleased to find that the person who called me to make this appointment also offered help with finding a house and applying for benefit, although this help was too late.

The DWP and my benefit applications have been a major contributor to my continued depression. My family, friends online and off, and the NHS, on the other hand, have all been excellent and supportive. I know from talking to others that I am very fortunate to be able to say that.

The benefit claims ordeal

Today I made the major step, to me, anyway, of getting my ESA50 form filled in at last. ESA50 is part of the process of applying for Employment Support Allowance, which should be my income while I cannot work. It is a form where I have to describe in great detail every part of my illness – each problem that I have, every drug that I take, and describe how it affects my life from walking and sitting to washing and going to the toilet. This daunting form has been hanging over me for weeks because I have been unable to face filling it in.

To recap, I have had ME for more than a decade, with all of the resultant problems like extreme fatigue, muscle pain, brain fog, insomnia, all much worse after any movement or activity. I also get frequent migraines, sometimes every day, and have suffered from those all my life. I’ve had diabetes for two and a half years, progressing at a disturbing rate, and a host of other problems as well. All of that combined makes me pretty flaky when it comes to getting anything done and it has ensured that I have a very intermittent work history. I’ve managed to work some years, but I have been stuck in my bed or my house for years at a time too. The last few months have been particularly bad and to cap it all off I started to get depressed about it all. I suppose it isn’t really surprising that I ended up suicidal given all of my health problems plus a sprinkling of my business going down the drain as a result, and imminent homelessness.

Unfortunately filling in an ESA claim form is very difficult for me. The simplest problem is that I can’t use a pen to write more than a sentence before my hand is in excruciating pain. Then there is the problem of concentrating enough to write every detail without forgetting anything or making mistakes. My ME causes severe brainfog a lot of the time and I often cannot concentrate or remember anything. Since it is also important to write problems in a way that correlates to the assesment criteria, most people don’t stand a chance of getting this right, never mind trying it with my concentration problems.

The biggest problem preventing my filling in the form has to have been my depression. Since I became depressed a few months ago I have frequently found myself paralysed by despair, literally unable to move, unable to do anything except focus on despair and on all my problems. Attempting any serious task or responsibility has usually resulted in this state and the ESA form has been the biggest trigger of them all.

It isn’t just filling in the form that has been difficult for me; after I applied I also had to deal with the DWP claiming that my sick note had run out after a week and demanding another one, despite it being for a month, and with them claiming that I hadn’t told them that my wife was working, when in fact they were told at the time that I applied. These two problems added to my mental block on completing the form.

Anyway, the story does get a little bit better. My sister works for a charity that is part of the DIAL network. (Disability Information Advice Line) She pointed out to me that I could get help from my local DIAL and so I gave them a call. My form was already late, and so despite their normal waiting time of six weeks they managed to get me an appointment within two weeks.

Today I met with a lady from DIAL and she went through the form, asking me questions and breaking down each question into small parts that I could answer. She took all the information that I told her and wrote it on the form in a  structure that matches the assessment criteria. She also talked to me at length so as to build an idea of everything that needed to be written in as additional information and wrote a whole A4 page about my illness. Having done this lots before, she already knew a lot of the problems that I face and so I did not have to drag it all out of my brain fog.

Despite all her help, the meeting was two hours long and was an ordeal for me to get through. I had already taken my maximum dose of painkillers to get there for 10am, and spending two hours in a chair in an office at the job centre was extremely difficult. At one point I couldn’t answer her questions any more and I was encouraged to take a rest – I ended up lying on the floor! I stayed there while part of the form was filled in but eventually had to get up which was even harder work and very painful. By the end of the interview I could hardly speak and barely stand but I was helped to stagger back to the waiting car and she even carried my bag.

So after all of that, I have a form filled in with far better answers than I could give, and probably the most accurate portrayal of my illness that has been written so far. (I did actually show her my blog post, A morning with ME, and was told that I should print it out and include it with my forms.) It is a great weight off my mind, or at least it will be shortly when I photocopy the form and finally post it. I will definitely ask DIAL for help with any future applications, assuming they survive government budget cuts.

My next step is to try not to worry too much about my impending Work Capability Assesment.

 

Panic!

I had a panic attack this morning. I don’t make a habit of them, this was only my second ever. The first one happened a few years ago when I had been given amitriptyline to try and reduce the pain I was in. The first day after I had taken it, I ended up in a complete panic, hyperventilating, scared and twitchy. I didn’t know what the hell was going on and so I called 999 to ask. They sent me an ambulance, and a wonderful paramedic who spent an hour holding my hand and calming me down while they took me to hospital. I’m slightly ashamed of tying up those services for a mere panic attack, but like I say I had no idea what was going on and I simply called for help from the only place I could think of.

Today’s attack then. I had gone to bed early so that I could sleep before Portal 2 was released early this morning. Amazingly, I had actually slept, although two hours after going to bed. I woke up with my normal selection of pain and inability to move much, took my painkillers and waited to feel better. While I waited I looked at twitter, and I quickly noticed that I was very irritable and confrontational. I took offence at several messages that weren’t even aimed at me, had a rant and started an argument.

And then as I decided to get away from the internet before I lost all my friends, I felt my mood dropping . A bit like when I hit the low points of depression but even more sudden than that. Then I was crying. The hyperventilating started. Feelings of despair mixed with sheer panic. Why? I have no idea. All I wanted to do before that was wait for the painkillers to work and then play Portal 2. What I had actually done was annoy lots of people then fall apart mentally.

Fortunately my wife came home at that point and a thirty minute hug managed to calm me down. She read out the messages that my friends on twitter had sent me (I had mentioned that my mood was dropping before I became frozen by the panic) and told them that I was all right. Finally I was stable enough for her to go and make me a cup of tea.

That was all a couple of hours ago. Now, I’m exhausted, shaken, in pain because the stress aggravated everything, and still irritable. I’m ranting here because quite honestly, it helps even if no one reads it. If you’ve got this far, thank you for sticking with it.

A kind friend sent me this while I was panicking, it helped. http://www.mindfields.org.uk/blog/?p=174

All in my head

In one of those odd random blips of popularity, my description of M.E. has been circulating around twitter and Facebook today. I found it quite interesting to read the way people described what I had written. People identified with it, and said that I had described the symptoms well. I found that comforting, in a way, because their identification with it means I haven’t imagined everything. When enough people tell you your illness is all in your head, it’s hard not to question if it is. Even to the point of wondering whether I’m saying I need to rest because I really need to, or because I’m lazy.

M.E. has a long history of controversy. Until very recently, no physical markers have been found for it. Diagnosis has been based on description of the symptoms and by ruling out everything else. Because there is no way to be certain of the diagnosis, public attitude to M.E. has been poor. Names such as “Yuppie Flu” are derisive and contribute to the attitude that people with M.E. are simply faking their illness, and are lazy or work-shy.

Many doctors have held the opinion that M.E. is a mental illness. They conclude that the fatigue and the pain are due to depression, and hold the belief that only therapy such as CBT and a slow increase in activity is necessary to cure the patient. In actual fact, the World Health Organisation classifies M.E. as a neurological disorder under Diseases of the Nervous System, G93.3. The Department of Work and Pensions also categorically states the CFS/ME is physical. Despite this classification, many doctors still believe that M.E. is purely a mental illness.

What is the impact of this belief? One of the defining features of M.E. is that fatigue is not explained by exertion, and in fact is out of all proportion to any activity. In my experience, the best management strategy for M.E. is Pacing. It involves making an effort to stick to a timetable of rests and a set level of activity, and working out how much activity can be undertaken and how much rest is necessary by gradually increasing activity until the maximum level is found, and staying at that level. If pushed into too much activity a person with M.E. will “crash” and may be completely incapacitated for a long time. The standard treatment for M.E. as a mental illness is CBT or GET which will push a person far beyond their safe limits.

Treating M.E. as a mental illness also appears to attach a stigma to it that just shouldn’t be there. Suppose for a moment that M.E. actually is a symptom of severe depression. It may change the treatment, but would it change anything else about the abilities of a person suffering from it? Would it mean that it was OK to tell someone “it’s all in your head” and “snap out of it”? Of course it wouldn’t. Depression itself is a real illness, needing treatment and medicine. Someone with depression cannot simply “snap out of it.” There are M.E. sufferers who are also depressed – I am one of them – but it is important to distinguish one from the other. I have had M.E. for ten years, and depression for a few months. It would be surprising if I didn’t get depressed at some point given the situation I am in.

If I could choose to be better, I would. Of course I would. I’m currently useless, stuck at home, in bed most of the time, my business is failing because I can’t work, I can’t even do any housework. I WANT to be well. I want to be rid of the crippling pain, the migraines, the dizziness, the insomnia. I want to be able to walk, to run, to ride my motorbike. So don’t you ever tell me to snap out of it. I might just have to beat you with my walking stick, just as soon as I find the energy.

Worth

I haven’t written a blog post for a couple of days. I feel bad about that. I feel like I have let people down because I know that I have expectant readers, but I also know that they will say it’s fine. I also feel like I have let myself down, and that one is true. You see, writing on my blog is therapy for me. It allows me to collect my thoughts, and arrive at conclusions, it gives me some purpose while the only other thing that I have to do is lie in bed and think about pain or get depressed. It also makes me happy when my blog helps other people to understand, or provide a way for other people to get their friends to understand them. It makes me happy when I look at my stats and see that one or two hundred people have read what I wrote, because that means it was worthwhile.

I am reminded of a character called Nutt from Terry Pratchett’s book Unseen Academicals. Nutt is an orc, although he has been told that he is a goblin and sent into society to see if he will fit in. Nutt was told that he must strive to acquire worth, and throughout the book he constantly asks the question “Have I worth?”

Being sick at home has stripped me of the things that I felt gave me worth. I can’t work, my father is running our business without me. I can’t even answer his questions when he comes to me for help. I’m not a Christian any more so I don’t lead worship (the music) at church. I’ve not been playing computer games much until this week, so I have been away from the gaming clan that I run and not there leading it, organising it. All these things gave me a purpose, and a sense of achievement and they have all been on hold. Even my internet-based political activism has been wound down slightly this week, as I have had too much brainfog to join the Armchair Army in bombarding everyone with messages about the NHS changes.

I know that it isn’t really those things that give me worth, that each person has worth in their own right. I think what I really need from my activity is purpose. If I can find a purpose in my activities, especially if they are activities that I can do while sick or recovering, then I can ignore some of the bad stuff in my life.

This has accidentally turned into an honest insight into my mind. I’m not actually sure that I want to post it, but I’m going to anyway. Because then I can feel better for having written something for my blog. 🙂