Chronic Fatigue Syndrome and Depression

According to statistics put forward by a group of doctors "true clinical depression probably affects between 25-33% of ME/CFS sufferers at some stage."

Since the onset of CFS I have struggled with my emotions. In the beginning it was purely a case of being frustrated that I wasn't getting the help I so badly needed, and that no doctors were taking my symptoms seriously.

Once in hospital I began to lack confidence in myself, when the doctors told me they were observing me for anorexia I began to convince myself I must have it, especially since at that time they had no other ideas about what it could be (or at least none that they were telling me about). During this time I was just incredibly confused about what was happening with my health, both mental and physical.

Once I was given my diagnosis of Chronic Fatigue Syndrome I had a sense of relief. I knew what my illness was, therefore now I could begin to overcome it. Gradually I began to realise that it was not going to be that simple, I did not know a great deal about CFS, but as far as I was concerned it was the end of the life I had dreamed of. No more career, no more relationships, no more going out and having fun. This was a life of pain and suffering, and there was nothing I could do about it.

This very quickly spiralled me into depression. I had rapidly gone from having a purpose and having fun with friends, to being so tired and in such agony that I couldn't leave my bed. I may as well have been stuck done with duct tape. I had no purpose, I had no life other than what existed within the four walls of my bedroom, and I was incredibly lonely. Gradually the intensity of my depression grew, it went from feeling low, to feeling extremely low, and eventually to feeling completely hopeless. As far as I was concerned this is was going to be my life from now on; pain, sickness, boredom, loneliness.

On a visit to the hospital my consultant recognised my symptoms of depression and quickly referred me to a psychologist. I was apprehensive, but I need not have been. As far as I am concerned, the psychologist I regularly saw changed my life completely. She taught me how to cope. As my mood improved I gained the motivation to try and do more things. I began to see that I was not completely restrained to being alone and doing nothing, and that this was not the end for me.

All of this occurred in the first year of my illness. In the following 2 years my depression has fluctuated massively. I spent a year back in education and the more I felt like I was getting back to my old life, the more I was moving away from all those feelings of despair that came along with the depression. But as things began to go downhill and I was forced to leave education as it was making me more ill, my depression returned, and this time it definitely came back with a vengence. This was very recent for me, and I am still in the process of building myself back up, with the help of a counsellor and my gp. My mood has improved a lot, and I can see the light again. My mood fluctuates everyday; sometimes I feel full of life and like I can do anything, and as a result I feel extremely positive. On other days, perhaps due to my symptoms becoming worse, but also often for no reason at all, my mood will fall and I will become quite low again. It is not easy to handle, and the constant fluctuations mean my life is quite unstable at times.

I have no idea what will happen in the future with my depression, but whatever happens I just hope I never hit the abyss again. By this I mean getting to the point of no return, not being able to see a way out and feeling like there is no reason to go on. So long as I keep my head above water, and concentrate on all the good things I have in life, I know I will be okay.

Anyone who has never experienced depression may find it difficult to relate to this post, and see it as one big complaint. To them all I would like to say is that depression is not something you can just shake off and get over. It is a dark shadow which follows you everywhere, sometimes the light shines so bright you think you have lost it, and you start to get excited about your life. But eventually the light will fade and the shadow will reappear, and you realise you didn't lose it at all, it was just hidden. It is not something you can outrun, and attempting this just makes you exhausted and extremely frustrated. The only thing you can do is accept the cards you have been dealt, and learn to make it as easy as possible for yourself.

"Mysteriously and in ways that are totally remote from natural experience, the gray drizzle of horror induced by depression takes on the quality of physical pain." - William Styron

The 'bad days'

Since my symptoms have flared up today it seems like an appropriate time to wirte another post. My doctor, and everyone around me really, like to call this a 'bad day'. I don't really like that label since it suggests the other days are 'good days', my doctor knows this and has started calling the 'good days' my 'not so bad days'.

Well I suppose I should explain the difference between my so called 'bad days' and 'not so bad days' shouldn't I?

I knew today was going to be a bad day yesterday, I had been really busy the last two days, shopping and seeing my beautiful niece and nephew. I did too much, which is something I do very often because I just like to try and do as much as physically possible, I don't want to miss too much because of my illness.

The first part of my 'bad day' actually started last night. I had insomnia and struggled to get to sleep, I finally dropped off at about 3am, unfortunately I then woke up at 4.30am, wide awake despite being completely exhausted! After a few hours I eventually went back to sleep and woke up at 8am.

Once I was awake it was very clear I was having a 'bad day'. I felt physically drained, as if all the energy had been sucked out of me and I had nothing left. My arms and legs felt heavy, I didn't want to move.

After an hour or so of lying in bed, watching tv and bracing myself to get up and go down stairs. Getting out of bed was a struggle. It is very difficult to explain the sensation I experience but I will do my best. It felt like every muscle in my body was too weak to work. They weren't contracting properly and I just wasn't functioning normally. I find this extremely frustrating as it makes me feel so weak and powerless. Along with this, when I stand up and start walking around my blood pressure dropped quickly and I became very dizzy and dissoriented. This symptom is something I always hide. I don't want people to know how weak I am, and how little I can do to prevent it.

The pain I experience is quite severe. I am on strong painkillers and still struggle to ignore the pain. When I first experienced the pain I get around 3 years ago I was horrified. How could I function when I was almost crippled by pain? Fortunately it turns out the human body is a very special thing. Gradually I began to adapt to the pain, it didn't seem so severe and I was managing to appear to be fine to those around me. I have always been one to keep issues to myself so I don't upset the people who care about me. Why would I let them know how much I'm suffering every minute of the day when they can't do anything to help me? It's my illness, my pain, and my problem.

One of the worst things about being in a 'bad day' is that I have to stay in bed all day, I don't mind this too much, I get to sleep and watch tv all day. Unfortunately on these days when I have nothing to do and I am feeling quite weak and low, I find myself smoking like a trucker. If I had the money I would easily be able to smoke around 40 cigarettes, compared to my normal average of 4 a day. Not very helpful considering I'm attempting to cut down and eventually quit altogether!

These days are hard. I can't do anything, I can't think straight and my head feels so heavy I just want to sleep forever. I'm in pain, I'm aching, I'm dying for some company to keep my occupied and keep my mind off my illness. These are the days when I find it hard to cope with my illness. The symptoms are severe and I hate these days.

I need a bath and to wash my hair, but I am much much to weak and tired. Therefore I either don't get it done or someone will help me. I hate this so much, I find it extremely embarassing to admit but it is so important to me that I show the whole picture. I want people to understand and learn, therefore I can't miss anything out.

In a few days I will be better, I will have some of my energy back (nowhere near how much the average person has but still enough to function), the pain won't be so severe, and I will be able to do things for myself again. I am so grateful for this, when I first fell ill I never had these obvious changes in severity of symptoms. Every day was a 'bad day'.

I do not write this to get pitty, I write this to show people how Chronic Fatigue Syndrome affects your whole life. The basic things people take for granted, like standing up, washing your hair, having a wash, for someone with CFS it is a massive struggle to do these things. Some can't do it ever, others like me are not so unfortunate. If this blog does anything, I hope it educates people, this is not psychological, this is not something which is just in people's heads, this is not just about being tired. This illness is real, it is severe, and it changes your whole life in one fowl swoop.

Making the best out of a bad situation

You may read my last few posts and think "my god that sounds awful", and yes it can be. But that doesn't mean it is all bad. I was once asked if I could find a way to go back and prevent myself from developing Chronic Fatigue Syndrome, would I do it? You are thinking the clear answer is yes. What insane person would choose to go through something so awful?

Well after a minute or so of careful thinking, I replied no. No, I would not prevent myself from developing this horrible illness.

At this point you may be thinking that I am completely insane, perhaps you are right. But before you decide for definite, hear me out.

My reason for that answer was simple. Before I got ill my biggest problems were things like not being able to buy the pair of shoes I saw in the shop and had decided I must have, or that the boy I fancied didn't feel the same about me. Since experiencing all the things that come along with Chronic Fatigue Syndrome I have realised that these issues are nothing compared to some of the things that other people go through. Who would be worrying about what shoes they own when they can't even get out of bed in the morning? Not me that's for sure!

Basically, going through issues everyday which the average, healthy person would dread, makes you put things into perspective. When you have to struggle just to complete the most basic things in your day to day life (getting out of bed, brushing your teeth, washing yourself, eating, etc.) things which once seemed important, no longer seem to be so.

Something which would mean hardly anything to someone without a serious illness, is something special to a Chronic Fatigue sufferer. I have had mornings where a polite bit of a chat from a delivery man has felt like the best present ever. You have to understand, often I spend day after day alone in my house, watching repeats on tv, eating the food I have kept close to the bed so I don't have to battle the stairs too often, and having a few naps. To you that delivery man may have seemed nosey, bothersome, or even rude. But to me he was a burts of fresh air in my otherwise mundane day.

It is so important not to stress over the small things, and to not take life for granted. I may get upset with those that have less problems than myself and who complain relentlessly, but I am well aware that there are those so much worse off than myself who would look at my problems and wish to trade places.

So basically, although I don't enjoy most of what comes with the illness, and I would be extremely happy for it to go away now I've endured it for a few years, I wouldn't like to give up the lessons I've learnt and the new perspective it has given me.

Much needed support

Everybody needs support from others, whether they admit it or not. Having support means you can achieve things you never thought you would be able to, and can experience things you never dreamed of. And more simply than that, it means you have someone to share the good times with, and to lean on during the bad times.

For sufferers of Chronic Fatigue Syndrome having help and support is, in my opinion, the most important thing. When you have someone to turn to, to distract you from the day-to-day problems, to wipe away the tears, and to keep you company during the lonely times, life doesn't seem so hopeless.

Over the last few years I have discovered that it is true what people say, you really do find out who your true friends are during times of hardship. Before I was diagnosed I would have told you that I had many good friends who I'm sure would be there for me if I needed them, but during the course of my illness I discovered that I was wrong. Many of those that I thought would be there, gradually faded away, a few appeared every now and again, and a small number were always there; holding my hand during the pain, telling me jokes to stop the tears and reminding me that it was all going to be okay.

I have never been one to ask for pitty, I feel incredibly uncomfortable when people tell me they feel bad for me because "it must be so awful to have chronic fatigue syndrome!". I understand why they say it, but this is my way of coping. Despite this I do sometimes need some support, especially during the hard times. Times when I am low, when I am in agony for days on end, or just days when I don't have the energy to leave the house. During these times, I don't know what I would do without a bit of support. (Well I tell a lie, I have felt like I had no support and it did not go well for me, but we can discuss that incident at a later date.)

To anyone who is reading this who has not gone through a problem similar to this, people turning their back on you during hard times may seem like the worst thing possible. But this is not the case. For me, the worst experiences I had were to have friends who said they would be there for me, and then couldn't cope, and left me to cope alone. During times like these I would question whether anyone would want to be with me, romantically or just for friendship. Could anyone really put up with all the stress that comes with this condition? The frustration of not being able to help in any way? Not knowing how the other person is feeling, and having to experience the extremely steep learning curve that comes with chronic fatigue syndrome?

For a while I believed that all this was true, it was hard enough for me to learn to adapt to such a life changing illness, I could never expect anyone else to do that for me.

But recently I have realised I was wrong. I was so damn wrong! I realised I had been focusing far too much on the people that couldn't cope and not enough on those who had been quietly following behind to catch me when I fell. Looking back now I see that there were some people who took it upon themselves to take on my problems and do their very best to support me whenever they could.

I have now come to the conclusion that it is not the illness which is forcing people away, it is them. Some people have the capacity to cope with all the crap which comes with being close to someone who is going through so much on a daily basis, and those that can't are not bad people, they are just different. If you find that you are being let down, and are not getting enough support from certain people, then it is probably time to accept that the chances are that you will never get the support you are so desperate for. But if you are lucky like me, you may also turn around to find those loyal few who have been there for you, every single step of the way.

Debut Post

This is my very first post, therefore I don't see any other option than to start from the beginning. In order to allow anybody who choses to read this to follow my journey from the very beginning.

At the age of 16 I had decided on a career in medicine, began my A Levels and was basically starting on the long journey to everything I wanted from my future. I was willing to work hard, and to not let anything stand in my way.

As it turned out, I didn't have a choice in the matter, after only around 2 months of studying for my AS Levels I was struck down with a mystery illness. I was not just tired, but exhausted. Physically drained to the point that it seemed impossible to sit up in bed in the morning. Along with this I no longer had an appetite. I thought about being hungry, knowing that I should be. But I never actually felt those hunger pangs. I less I ate, the less I wanted to eat, and eventually it became my mission to avoid food altogether. Why would I choose to eat when I was left feeling sick and so full from so little?

After months of not being able to leave my bed and losing weight faster than I could ever imagine, I was hospitalised. This was exactly what I had wanted for months, to be sent somewhere I could be helped and maybe made better. But it wasn't that simple, I went through one test after another. Being tested for all these diseases and illnesses was both terrifying and frustrating.

After putting on some weight (almost impossible to not put any one considering the fact that they were still observing me for signs of anorexia, and the nurses were writing down every last mouthful of food I consumed) I was released from the hospital, and sent home. I had no answers, nothing to make me feel any better, and no idea of what to do. In retrospect I think this is where my depression first became obvious. I had been to hospital, and gone through all the tests because I thought I would get an answer. I would be given something to treat whatever I had, and eventually I would be better. Instead I was still ill, had developed even more symptoms and had no answers.

A month later I was called back to the hospital, this was when I was given my diagnosis; Chronic Fatigue Syndrome.