Brain Fog

Brain fog (also called fibro fog or cognitive dysfunction) is one of the most common complaints of people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS). For many, it can be severe and can have just as big an impact on their lives as pain or fatigue. In fact, some people say brain fog is more of a disability than their physical symptoms. (http://chronicfatigue.about.com/od/symptoms/a/brainfog.htm).

When I was first diagnosed with CFS I was told what to expect in terms of physical symptoms, but I was never warned about the psychological symptoms. Through reading other people's experiences I have come to know these symptoms as 'brain fog', and this is as close to a perfect description as you can get. You do feel like there is this great, thick, grey fog hanging over you and blocking you from thinking clearly. Although the severity and the type of symptoms I experience differs from day to day, the general fog is always there, hovering over me and stopping me from feeling like myself, even for a second.

To someone with CFS/ME just the mention of the words brain fog will bring to mind all the symptoms and they will understand what I am talking about, but those who have not experienced this will need more information to be able to understand what it does to you, and how it prevents you from being a normal person, to the point of not being able to hold a conversation. So for those people I think it would make sense to explain how it affects you, don't worry I will try to keep it basic and not be too technical!


Description -

Like the physical symptoms, brain fog varies from day to day and usually gets more severe as the physical symptoms worsen. One of my main symptoms of brain fog which I experience on a daily basis is problems with my short term memory. I often feel like I'm losing my mind, I forget things that I have only just been told and I have to write down everything I have to do in order to at least try and remember them a bit better. Often I forget people's names, and even where I know them from. It leaves me feeling very confused and frustrated. I also feel embarrassed, at my age I shouldn't be having these kind of problems with my memory, isn't forgetfulness only for old people? Apparently not...

On the same kind of topic brain fog also often makes it difficult for me to vocalise what I am thinking, it is a basic thing we all learn how to do. We think what we want to say, and then we say it. Simple really. But since I have become unwell I have found that it is not always simple, I often mix up my words, or say the wrong word. Like saying the word 'kangaroo' when I meant to say chair (that one isn't fake, I genuinely did that a few days ago!).

Another big problem with brain fog is that it severely affects your ability to concentrate. When I was still in school and unwell this was extremely frustrating for me. I would sit there in lessons, I would be listening intently, but I would not have taken anything in after the first few words, I simple could not keep my mind on the subject. It wasn't that my mind wandered onto something else, the best way I can explain is that it just seemed to go blank, nothing could get in and nothing could get out. Also you can be distracted very easily, and once you have been distracted it is extremely difficult to get your mind back on the subject. Not exactly helpful when you are trying to take in hundreds of pieces of information everyday!

Also I often have trouble with numeracy, I was never the best at maths but I was good enough to do simple math pretty swiftly. Since becoming ill numbers are like my worst enemy. I can't remember even a short sequence of numbers and I struggle to do basic maths, it isn't that I have forgotten how to do it, it is just that when I try to figure it out my mind goes blank. It just sounds like a jumble of numbers that mean nothing to me.

Hopefully this post was not too much of a rant and has informed some people of how CFS can affect you mentally (although I failed to mention the other main psychological symptoms which are depression and anxiety).

It leaves you feeling confused and separate from everyone else. In a bubble, and completely incapable of basic mental tasks which even a child could do.

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.