Edie
22-07-13, 19:30
I'm sorry for the long post, but there's a lot to say. I don't know whether I'm ill or just crazy.
I've had depression and anxiety for many years, including cycling in and out of more severe episodes, but it's become much more stable over the past 2 years. I am definitely not cured, but things are stable and predictable, and I do not get the severe episodes any more.
About 10 years ago I was prescribed a new antidepressant, and from the very first day I took it, I was totally floored, could not stay awake for more than about 4 hours at a time, falling asleep at work and getting sent home after an hour, and just sleeping nearly all of the time. After a week I stopped taking it for 2 days so I could physically get to a doctor's appointment. He said it was most definitely not the antidepressant causing it and I must re-start taking it immediately, but suggested taking half a tablet, alternate days. For the next 2 weeks I slept all day on the days I took it, and felt a little better on the days inbetween. So I stopped taking it, and went back to the doctor to tell him I wasn't going to take it any more as I needed to go back to work after taking 3 weeks off due to not being able to physically get there.
Things gradually improved, but ever since then I've struggled with general tiredness (for a few years I was sleeping 10-12 hours per night and still struggling during the day), and also sudden attacks of severe tiredness when I would sleep all day long.
I had previously been a keen walker and cyclist, but I had to give this up, and also had to drop my hours at work as I was just going sick all the time as I couldn't stay awake. I had to drop my entire social life in order to cope with 4x6-hour working days, and the severe attacks seemed totally unpredictable and would hit me out of nowhere.
Throughout this period I was seeing my GP and counsellors who told me I was just lazy, that depression was causing this lack of motivation, and I must start doing more exercise. I tried to increase my activity, but after a few days I was completely floored again.
All the antidepressants I tried made me feel even more tired. Eventually I was referred to a psychiatrist to try and find a medication that would help. He asked me about my tiredness, and the onset, and concluded that it was a separate illness called ME. I never pursued this because I just thought it meant lazy, like all the doctors and counsellors had been telling me.
In the end, after 7 years of this, my doctor referred me to an immunologist. He acknowledged that I have depression and anxiety, but felt that the tiredness had a separate onset and he also diagnosed ME. He referred me on for treatment, but at this point I moved house to a new area.
My new GP referred me to a new immunologist. By this point I had done some research into ME and realised it explained a lot of my other symptoms, as I was also getting a lot of aches and pains (I had just thought I was really unfit, or that it was psychosomatic symptoms of depression). I believed I did have ME after all. The new immunologist asked a lot of questions about my anxiety and depression and told me to think positive. I was quite upset after the appointment, as I felt he had disregarded the physical symptoms and put it all down to depression. However, he sent me a copy of his write-up, concluding that I had moderate ME, of separate onset to my depression, and again I was referred for treatment.
The treatment consisted of a "lifestyle management programme," which was a group of about 10 of us who met at the hospital for 8 consecutive weeks and they told us ME was probably not curable, but can be managed to give us a better quality of life. They basically told us everything they know about how to manage ME for the best. (I fell asleep during some of the sessions :unsure: )
The main thing I learned about was something called "post exertional malaise" (PEM). This is a delayed fatigue that happens 1-2 days after you overdo things. All of a sudden these "unpredictable" attacks made sense. I'd been waking up feeling OK and trying to do absolutely everything, because I didn't know when my next OK day would be. And then I would collapse a couple of days later. They advised us to pace our activity. So if you wake up feeling OK, don't go and do everything, just do some things, and then do some more the next day. That way you don't overdo it and get PEM, but you have more steady and predictable energy levels instead.
The difference this has made to my life has been phenominal. I spread all my tasks out throughout the week and don't collapse and sleep all day very often any more. I don't have to cancel all my plans at short notice because of feeling so ill, which means I can confidently make plans now. I am a reliable employee who has not gone sick for 3 years because I spread my activity more carefully and make sure I go to bed at sensible times even if I feel like I could stay up later.
This was in 2011, and also coincides with my mental health becoming more stable. I feel like it's given me a life back. OK, so I can't go walking and cycling like I used to, it's not quite the same life, but it's A life. I have taken up some more sedentary hobbies which I enjoy a lot. If I never get better than this, I will have a very happy life.
But I had to renew my DLA application, and so I went to my GP to update him on things and show him an activity diary I'd kept for the previous week to illustrate things, because some people on an ME support forum told me it was helpful for doctors to see how much (or little) you're actually managing. I was telling him how I pace my activity much better and make sure I get enough sleep, and I'm much more stable now. I said I was very pleased that I was recently able to start some short, slow bike rides. I said I was having some difficulty because my pains sometimes affect my sleep, which I hate because I know I'll feel rough the next day if I don't get enough sleep. I was hoping for something to help with the pain, but he just said take paracetamol, which really doesn't touch the sides, and wears off half-way through the night anyway. But mainly I wanted to make it clear that I am still ill, in case the DLA people asked him.
Well, he wasn't too happy about this, especially the activity diary. He said I was just obsessed with my sleep and energy levels. He said that lots of people suffer bereavements and I clearly needed bereavement counselling and if I didn't go then I was only bringing this on myself. (I hadn't actually mentioned my bereavement 14 months prior at this appointment, but the bereavement counsellor told me I seemed to have a really healthy attitude to my bereavement and didn't need to see her again, which was what I felt at the time anyway really.) He said 1/3 of his patients have exactly the same problem and they aren't claiming disability benefits like me, and I should just get a job (erm . . . I already have one).
This was last August, and since then I've started university. I struggled for a period and contacted the ME clinic. They suggested I ask my GP to refer me back to them as they felt the advice I was asking for was more than they could really help with without seeing me. Well, I told my GP I was considering quitting uni as I couldn't cope, and could he refer me to the ME clinic to see if they can help me manage things better so I can stay on. I didn't mean to be emotive, I just wanted to be honest about how severe the problem was. He said I was not at all ill and only believed I was. He said he would not refer me for therapy or prescribe me antidepressants because I wouldn't co-operate, and that I knew what I needed to do, which left me totally confused because I was asking for a referral to someone who can advise me because I DIDN'T know what to do!
He has started referring to my ME as "this fatigue thing you think you've got." This is upsetting. It actually took a long time for the doctors to convince me I had ME instead of just laziness. I have now been diagnosed with ME by 3 consultants. I have responded well to the suggested management strategies for people with ME and am achieving more than I was before. I am no longer missing work, although I have missed one day of college where I went home at lunchtime because I was feeling too ill (this was when I told my tutor I felt I needed to leave the course and I was also very upset which may have contributed). My mental health is so much more stable and I have had NO mental health crises at all since adopting this new strategy - despite the aforementioned close, sudden bereavement. So does it even matter whether I have ME or not, if I am doing better as a result of the management strategies - I certainly have something, and this helps, so does it matter whether you call it ME or purple flying pants disease?
But then, the doctor I see now, maybe he can see something the consultants didn't. I'm really starting to doubt myself. Maybe I don't really have ME after all. Maybe these past 10 years of illness and giving up my hobbies, maybe I've done this all to myself.
I tried to do some more activity. I've worked a few days of overtime and been on some outings. I thought I would be OK to do these extra things because I didn't really have an illness, but then I was totally floored by pain and fatigue again, which I wasn't expecting. I spent about 3 hours lying on my kitchen floor one day last week because every time I stood up to get food, I fainted. It was terrifying at the time, I thought I'd be stuck there forever, but this is exactly the kind of thing the doctor is talking about I'm doing it all to myself.
I can't see how I can ever get better from this. I do stuff and think I will be fine, but unconsciously I believe I will feel ill, and that makes me feel ill. But this has been going on for 10 years now and I can't see how it can be undone. How can I discuss this with a therapist if I'm so totally unaware of my unconscious thoughts? How can I be so delusional that I've lost 10 years of my life to this craziness, and even managed to fool 3 consultants and the DLA people? There really is no hope for someone this crazy.
I don't really know what to do with myself now. I feel exhausted and like I need a really good rest for a few days. I'm struggling more than usual with anxiety and depression (nowhere near crisis yet, just worse than normal - it could just be a blip, but if I'm poorly that would be a common thing that used to trigger the bad episodes off). According to what I learned in the ME clinic, I should rest now. But if I'm just bringing this all on myself I should be getting out and doing more sport. I know this is what my doctor would advise. But then if I do have ME after all, that will make me more ill. AAARRRGH!!!
And if you've read all that then YOU will also be feeling fatigued now!
I've had depression and anxiety for many years, including cycling in and out of more severe episodes, but it's become much more stable over the past 2 years. I am definitely not cured, but things are stable and predictable, and I do not get the severe episodes any more.
About 10 years ago I was prescribed a new antidepressant, and from the very first day I took it, I was totally floored, could not stay awake for more than about 4 hours at a time, falling asleep at work and getting sent home after an hour, and just sleeping nearly all of the time. After a week I stopped taking it for 2 days so I could physically get to a doctor's appointment. He said it was most definitely not the antidepressant causing it and I must re-start taking it immediately, but suggested taking half a tablet, alternate days. For the next 2 weeks I slept all day on the days I took it, and felt a little better on the days inbetween. So I stopped taking it, and went back to the doctor to tell him I wasn't going to take it any more as I needed to go back to work after taking 3 weeks off due to not being able to physically get there.
Things gradually improved, but ever since then I've struggled with general tiredness (for a few years I was sleeping 10-12 hours per night and still struggling during the day), and also sudden attacks of severe tiredness when I would sleep all day long.
I had previously been a keen walker and cyclist, but I had to give this up, and also had to drop my hours at work as I was just going sick all the time as I couldn't stay awake. I had to drop my entire social life in order to cope with 4x6-hour working days, and the severe attacks seemed totally unpredictable and would hit me out of nowhere.
Throughout this period I was seeing my GP and counsellors who told me I was just lazy, that depression was causing this lack of motivation, and I must start doing more exercise. I tried to increase my activity, but after a few days I was completely floored again.
All the antidepressants I tried made me feel even more tired. Eventually I was referred to a psychiatrist to try and find a medication that would help. He asked me about my tiredness, and the onset, and concluded that it was a separate illness called ME. I never pursued this because I just thought it meant lazy, like all the doctors and counsellors had been telling me.
In the end, after 7 years of this, my doctor referred me to an immunologist. He acknowledged that I have depression and anxiety, but felt that the tiredness had a separate onset and he also diagnosed ME. He referred me on for treatment, but at this point I moved house to a new area.
My new GP referred me to a new immunologist. By this point I had done some research into ME and realised it explained a lot of my other symptoms, as I was also getting a lot of aches and pains (I had just thought I was really unfit, or that it was psychosomatic symptoms of depression). I believed I did have ME after all. The new immunologist asked a lot of questions about my anxiety and depression and told me to think positive. I was quite upset after the appointment, as I felt he had disregarded the physical symptoms and put it all down to depression. However, he sent me a copy of his write-up, concluding that I had moderate ME, of separate onset to my depression, and again I was referred for treatment.
The treatment consisted of a "lifestyle management programme," which was a group of about 10 of us who met at the hospital for 8 consecutive weeks and they told us ME was probably not curable, but can be managed to give us a better quality of life. They basically told us everything they know about how to manage ME for the best. (I fell asleep during some of the sessions :unsure: )
The main thing I learned about was something called "post exertional malaise" (PEM). This is a delayed fatigue that happens 1-2 days after you overdo things. All of a sudden these "unpredictable" attacks made sense. I'd been waking up feeling OK and trying to do absolutely everything, because I didn't know when my next OK day would be. And then I would collapse a couple of days later. They advised us to pace our activity. So if you wake up feeling OK, don't go and do everything, just do some things, and then do some more the next day. That way you don't overdo it and get PEM, but you have more steady and predictable energy levels instead.
The difference this has made to my life has been phenominal. I spread all my tasks out throughout the week and don't collapse and sleep all day very often any more. I don't have to cancel all my plans at short notice because of feeling so ill, which means I can confidently make plans now. I am a reliable employee who has not gone sick for 3 years because I spread my activity more carefully and make sure I go to bed at sensible times even if I feel like I could stay up later.
This was in 2011, and also coincides with my mental health becoming more stable. I feel like it's given me a life back. OK, so I can't go walking and cycling like I used to, it's not quite the same life, but it's A life. I have taken up some more sedentary hobbies which I enjoy a lot. If I never get better than this, I will have a very happy life.
But I had to renew my DLA application, and so I went to my GP to update him on things and show him an activity diary I'd kept for the previous week to illustrate things, because some people on an ME support forum told me it was helpful for doctors to see how much (or little) you're actually managing. I was telling him how I pace my activity much better and make sure I get enough sleep, and I'm much more stable now. I said I was very pleased that I was recently able to start some short, slow bike rides. I said I was having some difficulty because my pains sometimes affect my sleep, which I hate because I know I'll feel rough the next day if I don't get enough sleep. I was hoping for something to help with the pain, but he just said take paracetamol, which really doesn't touch the sides, and wears off half-way through the night anyway. But mainly I wanted to make it clear that I am still ill, in case the DLA people asked him.
Well, he wasn't too happy about this, especially the activity diary. He said I was just obsessed with my sleep and energy levels. He said that lots of people suffer bereavements and I clearly needed bereavement counselling and if I didn't go then I was only bringing this on myself. (I hadn't actually mentioned my bereavement 14 months prior at this appointment, but the bereavement counsellor told me I seemed to have a really healthy attitude to my bereavement and didn't need to see her again, which was what I felt at the time anyway really.) He said 1/3 of his patients have exactly the same problem and they aren't claiming disability benefits like me, and I should just get a job (erm . . . I already have one).
This was last August, and since then I've started university. I struggled for a period and contacted the ME clinic. They suggested I ask my GP to refer me back to them as they felt the advice I was asking for was more than they could really help with without seeing me. Well, I told my GP I was considering quitting uni as I couldn't cope, and could he refer me to the ME clinic to see if they can help me manage things better so I can stay on. I didn't mean to be emotive, I just wanted to be honest about how severe the problem was. He said I was not at all ill and only believed I was. He said he would not refer me for therapy or prescribe me antidepressants because I wouldn't co-operate, and that I knew what I needed to do, which left me totally confused because I was asking for a referral to someone who can advise me because I DIDN'T know what to do!
He has started referring to my ME as "this fatigue thing you think you've got." This is upsetting. It actually took a long time for the doctors to convince me I had ME instead of just laziness. I have now been diagnosed with ME by 3 consultants. I have responded well to the suggested management strategies for people with ME and am achieving more than I was before. I am no longer missing work, although I have missed one day of college where I went home at lunchtime because I was feeling too ill (this was when I told my tutor I felt I needed to leave the course and I was also very upset which may have contributed). My mental health is so much more stable and I have had NO mental health crises at all since adopting this new strategy - despite the aforementioned close, sudden bereavement. So does it even matter whether I have ME or not, if I am doing better as a result of the management strategies - I certainly have something, and this helps, so does it matter whether you call it ME or purple flying pants disease?
But then, the doctor I see now, maybe he can see something the consultants didn't. I'm really starting to doubt myself. Maybe I don't really have ME after all. Maybe these past 10 years of illness and giving up my hobbies, maybe I've done this all to myself.
I tried to do some more activity. I've worked a few days of overtime and been on some outings. I thought I would be OK to do these extra things because I didn't really have an illness, but then I was totally floored by pain and fatigue again, which I wasn't expecting. I spent about 3 hours lying on my kitchen floor one day last week because every time I stood up to get food, I fainted. It was terrifying at the time, I thought I'd be stuck there forever, but this is exactly the kind of thing the doctor is talking about I'm doing it all to myself.
I can't see how I can ever get better from this. I do stuff and think I will be fine, but unconsciously I believe I will feel ill, and that makes me feel ill. But this has been going on for 10 years now and I can't see how it can be undone. How can I discuss this with a therapist if I'm so totally unaware of my unconscious thoughts? How can I be so delusional that I've lost 10 years of my life to this craziness, and even managed to fool 3 consultants and the DLA people? There really is no hope for someone this crazy.
I don't really know what to do with myself now. I feel exhausted and like I need a really good rest for a few days. I'm struggling more than usual with anxiety and depression (nowhere near crisis yet, just worse than normal - it could just be a blip, but if I'm poorly that would be a common thing that used to trigger the bad episodes off). According to what I learned in the ME clinic, I should rest now. But if I'm just bringing this all on myself I should be getting out and doing more sport. I know this is what my doctor would advise. But then if I do have ME after all, that will make me more ill. AAARRRGH!!!
And if you've read all that then YOU will also be feeling fatigued now!