Depression Part One - Getting in the Box

I’ve been hearing a lot about people struggling with depression and anxiety recently, and I’ve been meaning to do a post about it. It was impossible to fit everything into one post, so this is the first of two posts. This one is about depression itself and the next one will be about recovering from it.

I have been lucky in that I haven’t suffered with depression as a result of my CFS/ME, but many people do. It is unsurprising that when faced with a future of debilitating fatigue and reduced quality of life, many people become clinically depressed. I am fortunate that I fought depression much earlier in my life and as a result I am able to prevent it returning. I can only imagine how awful it must be to have depression and CFS/ME.

I developed depression in my late teens, and anxiety symptoms sometime later. I didn’t know that’s what it was at the time. I just got on with things, but I was miserable and cried a lot. I began to have a niggling doubt at the back of my mind, that all was not well.

And I proved to be right. One day whilst staying at my boyfriends flat in my first year at University, I had a complete breakdown. I was trying to study for my exams and really struggling, and all of a sudden I thought ‘I can’t do this!’. I broke down in tears, my boyfriend (now husband) was out at a lecture and I just did not know what to do with myself, but I phoned my mum, who very sensibly told me to go and see a doctor. And that was how it began. 

I struggled with it for the best part of four years, I took antidepressants and I had counselling and eventually some Cognitive Behavioural Therapy (CBT). I had to drop out of my degree course for a year and go and live at home. My poor boyfriend suffered greatly, watching me fall to pieces.

It is impossible to explain it to someone who has never had it, but I will try anyway. For those of you that have had it, my words will probably make a lot of sense. 

My husband once told me about a dream he had where he was being chased by a tiger, to deal with this he turned round and picked the tiger up and put it in a box. This is him all over, he’s very practical and can deal with any problem. But it illustrated how normal people deal with problems, they put them in a mental box until they are ready to deal with them. People with depression get confused and put themselves in the box instead of the tiger, and shut the tiger out. This is fine to begin with but then more and more tigers come and you have to make the box stronger and stronger to keep them out. However, not only does it just keep problems out, it keeps all the good things out too. It keeps out happiness and laughter and fun and love and everything positive in our lives. Until one day you realise you have trapped yourself in a prison and you are totally and utterly alone. You cannot feel anything good or bad, you become numb and isolated. And with the isolation come feelings of guilt and fear and pain and they are in the prison with you. Outside there are all the problems you avoided growing bigger and bigger and battering at your walls, along with all the good things in your life. You are completely cut off from them in a prison you have unconsciously built. So what do you do? If you stay inside you will remain numb and dead and isolated, if you take the walls down you have to deal with the problems that you shut out, which have now grown to enormous proportions. It’s not much of a choice, both prospects appear equally ugly. And there is one final thing, if you are trapped in the box, if you are depressed, you fundamentally believe, in fact you know, you can never recover, you can never be happy and normal again.

You become someone else in that box, another version of you, and it whispers evil things to you. Telling you the only answer is to end it all. It is a horrible and insistant voice, but in that moment it seems like it is wise and I understand why many fail to resist it. I always knew what I would do and how I would do it if the day came when I would follow it’s advice, but thankfully it never did.

It’s not a box for everyone, sometimes it’s an actual prison, or an attic, or a locked room, or a deep hole. It was only in the later and more minor stages that it felt like a box to me. In my worst stages it was a rock in the middle of a vast ocean. I was stranded on it and the water was rising. The shore was far, far away, and that was where the people I loved were. If I wanted to get back to them I had to cry out the whole ocean, because it was an ocean of tears, and if I didn’t cry it out it would drown me. 

It is possible to recover from depression. I know it is, because I’ve done it. But it is the hardest thing I have ever had to do, and I needed a lot of help to do it. I am so glad that I managed to find myself and become ‘me’ again. If CFS/ME is a battle of the body, depression is a battle of the mind. It has one distinct plus point over CFS/ME, it can be fought. CFS/ME can only be beaten by submitting, depression can be beaten by fighting.

A Visit to the Osteopath

Monday is Cranial Osteopathy day. Not every week, but once or twice a month I go and see my osteopath. Cranial osteopathy was suggested to me quite some time ago, but it was only six months ago that I acted on it. Initially I did some research and found that some people find it helps their CFS/ME symptoms. I was really feeling I needed to do something and was going through a very unaccepting phase (of having CFS/ME) so I phoned the recommended osteopath and made an appointment. 

I did not know what to expect as I have never done anything like osteopathy before. But I was a little surprised to have two osteopaths at my first appointment. They took a detailed medical history and asked me what I wanted to improve and change. Mainly I wanted more energy and to sleep a bit better. They had me lie down to assess me, or so I thought. I lay there for a long time, with one with hands under my head and the other with hands under my feet. I was encouraged to relax and I gradually I did. They had a bit of a discussion and then moved so one of them had hands under my spine. The time passed quite quickly, but I was unaware of anything really happening or being done. Then they decided that was enough for today and we had a chat about some problems with my coccyx, which I knew were an issue and have affected me since I fell on it in my early teens. I was advised to take it easy for the next few days as they had ‘done quite a lot’. Feeling slightly mystified I made another appointment.

It was only when I went down the stairs outside that realised that they really had done something to me because I was exhausted and my hip was aching. I was rather puzzled as I could have sworn nothing had really happened, and I resolved to pay more attention next time. That night I had the best night’s sleep I had had in months. The exhaustion lasted a few days and the hip pain disappeared fairly quickly. I noticed a feeling of ‘space’ in my lower abdomen and pelvis, this sounds very bizarre, but it is the only way I can describe it. ‘Intense relaxation’ may make more sense, but it really did feel more like ‘space’ being made. I realised that unconsciously I must have been aware of pain in this region caused by my damaged coccyx, because all of a sudden I was aware there wasn’t any pain any more.

Initially the effects only lasted a few days, but as time went on I began to notice significant improvements, that lasted for long and longer after each appointment. My sleep improved dramatically, I began to have a little more energy and the post exertional malaise (being exhausted the day after activity) was reduced. I coped amazingly well over Christmas, with several trips to see family and friends without any problems. My restless leg syndrome (strong sensation of needing to twitch/move) has disappeared, for which I am very grateful as it drove me nuts and kept me awake. And my IBS symptoms have virtually gone, although they still re-emerge at times of stress.

I now know that they do ‘do’ something to me. Having paid attention I notice that the osteopath makes tiny fingertip movements. And although I don’t really know what this does it has a positive effect. Mostly the idea seems to be about reducing my physical symptoms of stress. 

This may sound a bit too good to be true, and yes, in some ways it is. I am very lucky it has helped me as it doesn’t help everyone. But there is a price to be paid. Not just a monetary one, but a physical one. Each appointment leaves me exhausted for up to five days afterwards. It is only after this time that I start to feel the benefits. Then provided nothing really stressful happens (like trips to the vet) I have a really good few weeks until my next appointment. Fortunately, I have help with the financial price, and as for the physical one, it’s one I’m willing to pay. 

On a totally different note, Walter is much improved. His blood test results indicated he has allergies and intolerances of some sort and having been started on hypoallergenic food he is no longer being sick. However, just to finish me off completely he developed a nasty cough immediately after starting the new food and I had two trips to the vets in one day, one of which was out of hours and to the veterinary hospital across town. I was pretty stressed by the end of the day and totally exhausted, and Walter was very tired, but thankfully a course of antibiotics over a few days has returned him to his normal perky self.

Walter

The last few weeks have been rather stressful, as our dog, Walter, has been ill. So it seemed an appropriate time to do a post about him.

When I was first ill, I got very lonely. I was stuck at home all day, too ill to go out and the only people I really saw were my husband and my parents when they were able to visit. Not only did I get very lonely, but I was grappling with coming to terms with an illness that had stopped my life in its tracks. At some point my husband and I started talking about getting a pet to keep me company. Initially we looked at house rabbits (apparently rabbits are happier living in a house and can be toilet trained), then we looked at cats and eventually we decided a dog was the answer, and after much research we settled on a Finnish Spitz as the most suitable breed. 

And that is how we came to get Walter. We had to go a long way to collect him, as there aren’t many Finnish Spitz breeders in the UK, and I remember being totally exhausted and wondering how we were going to cope with this tiny furry thing that had come into our lives. In hindsight, a puppy was not a wise idea. Puppies are extremely hard work and require almost constant attention, not to mention 15+ toilet trips into the garden every day, and our garden has a lot of steps.  What was good, was that short walks were exhausting for him, so Walter and I took short walks together and when we got home he slept and I rested.

Unfortunately, at some point I had a relapse and Walter’s walking ability overtook mine and I wasn’t able to walk him as much as he needed. We got a lot of help by sending him to daycare and later by having a dog walker.

As Walter has got older he has become a better companion for me. He likes to sit on the sofa with me and watch TV. He tucks himself under my arm for cuddles and given the opportunity will enthusiastically lick my face. Although I appreciate this sentiment, I try to avoid doggy kisses as they are rather slobbery, and you never know where his tongue has been. Or rather you do, and would rather he didn’t put it on your face as well.

 We’ve had a few behavioural problems to work on with him, and he is a complete nutcase, particularly when it snows. And at times he can be very tiring – I believe I mentioned barking in a previous post. But most of the time he is lovely. And I can honestly say I haven’t been lonely since we’ve had him. He may not be human, but he is an individual, with his own little, or not so little personality. He gets terribly worried if anyone cries or makes any strange noise (like choking or snoring) and will rush up to you and desperately try to lick your face. It’s hard to carry on crying when a dog is enthusiastically licking your face, and in fact he usually makes me laugh. Then we'll have a cuddle, and I will go back to my day feeling a little better.

In the last few weeks he has been sick a lot, and we’ve had several trips to the vet, which both Walter and I find very stressful. We’re waiting for some blood test results, which will hopefully give us some answers. 

I would definitely recommend getting a pet to anyone with CFS/ME. Although I would say that a puppy is probably not such a good idea, because whilst they provide great entertainment, they are very hard work, although a flat garden would make this a little easier. Do your research carefully, and bear in mind that pets can be expensive to look after, and if they are ill it is a terrible worry. But if you can afford it and are able to look after one, a furry friend is an excellent solution to the loneliness and isolation of being ill.

Losing Control

I’ve recently started doing some Cognitive Behavioural Therapy (CBT) with my local CFS/ME service. At my appointment recently our discussion reminded me about a major problem I have with CFS/ME – it has caused me to lose control over my life.

I’ve always been a bit of a control freak. I’d never get drunk because the idea of losing control of myself frightens me. In fact I am mystified as to why anyone wants to get drunk as most people lose control of their behaviour. That just shows how much of a control freak I am.

I keep my life and emotions under close control. In fact losing control of myself, to me, is the equivalent of ceasing to exist. The times I have lost control over myself I can count on one hand and all were due to extreme mental and or/physical stress. I do not like myself when I am not in control.

CFS/ME has lowered my tolerance thresholds. I can no longer tolerate mental and physical stress in the way that I used to. It takes much less these days to send me to the brink of losing control. Noise in particular drives me mad. Screaming children used not to bother me, but now... I am just very grateful that I don’t have any myself. Barking dogs also drive me up the wall. This is unfortunate, because we have a dog... a barking dog. And when I say barking, I mean BARKING!!! I lost my temper more in the first six months of owning our dog, than I think I ever have in my life prior to that. Just to be clear, losing my temper is the first stage of losing control of myself. Thankfully, the barking has been reduced to a minimal level. Barking sessions lasting 20-30 minutes plus are thankfully a thing of the past. But they showed me how terrified I was of losing control of myself.

Me? Barking? Never!

And why have I become so paranoid about losing control of myself? Well, apart from the fact that I’m probably wired that way, I’ve lost control of everything else. My life was going as I had planned and it was all ‘under control’. Things were working out how I intended them to. Then all of a sudden they weren’t. The ‘plan’ went out the window. I no longer had complete control over my body. It wobbled and shook and became exhausted after barely moving at all. My limbs became heavy and difficult to manoeuvre. I would suddenly collapse and fall over for no apparent reason. My brain no longer functioned correctly, things seem to connect up wrong in my head. My previously excellent memory became woolly. I was no longer able to carry on with my job. I was barely able to carry on with my life. I just existed, because that was all I had the energy for.

Up until this point very little that has happened to me has been out of my control. Yes, there have been some things inevitably, but not many. I am a planner and an organiser and a writer of lists. I know what I am doing next week, next month, and next year. And all of a sudden I didn’t. I had lost control over what was happening to me and what was happening in my life. I didn’t know whether I would be better in a week or whether it would take ten years. I had lost control.

As I’ve improved some control has come back to me. My body obeys me 99% of the time again – something for which I am truly grateful. My mind obeys 70% of the time. But most importantly of all my life is mine again. I have enough energy to do important things some of the time. And when I say important, I mean important to me personally. Like cooking. Or going out for a coffee with my husband. Or writing this. And I think that the thing that has allowed me to gain some control over my life is pacing. Doing things at a sensible pace and not using up my limited energy in one go.

I have quite a lot to say about pacing. And I will in another post. I’ve been struggling with my post about pacing for some time. It’s written, but I’m not happy with it yet, but I hope to bring you a post about the challenges and advantages of pacing in the not too distant future.