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.