Brain fog and its many guises

There are a few CFS topics that I have wanted to write about for some time and brain fog is one of these. Brain fog, described as "a state of confusion or lack of clarity" [1], is a symptom suffered by many people diagnosed with CFS. It is something that I too have experienced regularly over the last 11 months. For me, however, brain fog is more than the inability to think because of a muddled head. I have had a range of symptoms relating to my cognitive abilities, each of which I associate with the term brain fog. Many of these are experienced by healthy people and I too had some of these before I became ill, but since I have been diagnosed I have noticed them happening more and more, especially when I am tired. I wondered if anyone else with or without CFS had suffered these scenarios. What are your thoughts on the subject? Here are a few of the things that i relate to brain fog:

1. When I read signs, adverts or newspaper billboards, the words that i read are often not the words printed, but words that look similar, relating to something that I have been recently thinking about. After a second look the real word comes to me.
   
2. A similar thing happens with people. Often, when I walk past people in the street, for the first few seconds I see a person that i recognise. Again, a second or closer look makes it obvious that the person is not who I am thinking and often looks nothing like that person. This has been happening a lot to me in Germany.
3. My memory for names has become apalling. I find that when I am introduced to someone their name never sticks in my head. This never used to happen.
4. Also, I don't really pay attention to what I'm doing. I often find myself asking - did I lock the door? Did I take my tablets?
5. Again, relating to attention, my concentration span is terrible. I cannot concentrate on anything for any length of time before my mind wanders off elsewhere.

My research is associated with memory and I know quite a lot about it. Indeed, I have even studied everyday memory lapses [2]. So, I know that these are all fairly common memory lapses and in themselves don't merit any worry. The point I want to emphasize is the frequency with which they now happen to me. I'd really like to hear other peoples' thoughts and experiences.

References:

1. http://www.drlwilson.com/articles/brain_fog.htm

2. Elsweiler, D., Ruthven, I., and Jones, C. "Towards Memory Supporting Personal Information Management Tools" Journal of the American Society for Information Science and Technology 2007 (pdf)

The events of the last few days

Wow it has been a hectic week. This is the reason that it has been nearly a week since my last post. Since I first became ill I have had many ups and downs, false dawns and setbacks. I think this week has been the perfect example of this. When I last posted I wrote about my niggling doubts about the candida diet because of the wind and disappearing energy etc. However, I continued on and after a few days started to reap the rewards (ish). My energy came back and the wind died back somewhat. However, as there always seems to be, there was a sting in the tail. My blood pressure was low at the start of the week and continued to drop almost daily to worrying lows (I had one reading of 87/38). My hands and feet were freezing, my head was dizzy and I had pains in my hands where the veins embossed. The blood pressure raised when I did some exercise, a little dancing (don't tell anyone) or a brisk walk, but soon fell again as soon as I sat down for any length of time. Naturally I was worried. Although, on the other hand, it was reassuring to find that I was able to do all this exercise without any problems. I did more exercise in one day on Monday than I had done in months before. However, on Tuesday it came to a head, perhaps as a result of the exercise - who knows?

Tuesday morning, after a hot and cold shower and a few stretches, the b.p was on the verge of normal (105/59), but by lunch time this had lowered to (100/41). Desparate for it not to fall any more I went for a short, brisk walk. When I returned I had lunch but I wasn't feeling great. I thought a short 30 min nap would sort me out. I woke up 2 hrs later, panic stricken, heart pounding, sweating and disorientated. I lay in bed not knowing exactly what to do, but I tried to go back to sleep. A few hours later I woke up, felt ok (ish). I took my b.p, which was normal (something like 115 / 70 - the highest it had been in a week). I found this bizarre. I went to the doctors to check it out anyway. Again the doctor read my b.p as normal, but recommend I see a specialist to get my C.V system checked out properly. This is what I am doing tomorrow. However, since then my readings have been fine and I have had no other symptoms etc. This seemed truelly bizarre until I discovered that the readings my girl friend's parents' b.p measure varies depending on the position of your arm. When I hold it in the position I was instructed by the doctor I get a low reading (altho everyone else seems to get a normal reading this way) and when you hold it as instructed in the manual, you get a normal reading. This means that the chances are my bp had never actually been as low as I thought. However, how do you explain the dizzy headaches, cold hands and feet, embossed veins and pains? All of these disappeared on Tuesday afternoon so were they all manifested by panic? Hopefully the specialist will get to the bottom of my little mystery.

During all of this I entered the next phase of the diet. On Monday I started taking the replete that I was actually meant to take along with starting the diet, but found difficult to source in Germany. So I have started 2 weeks late. Biocare Replete is high strength acidophilus recommended to me by my herbalist. It contains 100 billion bacteria per sachet (50 times the strength of my quest acidophilus) and you take 1 sachet per day for 7 days. You take each sachet dissolved in water and with your first sip you can feel the effect. Actually, it is not a particularly pleasant sensation, bringing about wind (not disimilar to what I have been experiencing). The tub notes this as a possible side effect, so I will keep an eye on it and consult my herbalist if it continues.

Well that was my week. I hope this post makes sense. I feel as if I have just blurted out everything in one incoherant rambling. Maybe this is the best way to blog. Let me know what you think.

Another set back or just a blip?

Days like today are extremely challenging. After a pretty good week, where I have felt my health improve continuously while achieving my goals (I will talk about these another time), today I cannot get the motor running.

It really started last night around 8.30pm. In the time it takes to flick a switch I went from feeling great, to completely shattered. It also coincided with a return of the chest pain and trapped wind that had all but faded during the week. I went near enough directly to bed - there was nothing else for it - and I fell fast asleep.

When I woke up this morning I felt terrible. It is not too uncommon for me to get days like these and they mean one of two things: just an blip day where I am off colour and don't get much done or a full set-back that means back to square one. I will find out the answer tomorrow. The important thing is, and I have learned this lesson, to stay postive and not to worry too much about it and try to get on with as normal a day as possible. Just don't over (or under) do it.

I have likened the feeling to a hangover. My head has a dull ache, my legs and arms are heavy and I generally just feel like crap. When I do finally manage to get out of bed, I just cannot seem to get the motor started. I struggle to concentrate on the simplest tasks and work is almost impossible. But, this won't stop me from trying. It is so frustrating because yesterday I was getting myself into the groove quite nicely and the week generally has been quite productive.

This is the nature of the beast - I keep my fingers crossed for tomorrow

Psychological Aspects of ME / CFS

For me last Friday's events typify the main difficulty with living with ME / CFS - panic.

Christine and I were invited to attend a Ceilidh in Nuernberg. I wasn't feeling particularly great on Friday evening, still troubled by the digestion problems that had plagued me all week, but as I am Scottish and I knew many of the people who attend and I also love Ceilidhs, I felt obligied to attend.

The Ceilidh started wonderfully. We went along a few hours before because Christine had to help with the hall decoration etc. and this was good because it gave my stomach time to settle. By the time people start arriving I felt much better and for the first hour or so I was really in my element. I was talking to people, meeting friends from the past. It was wonderful!

Then came the turning point. I think I had just exerted myself a little too much, I hadn't danced (just 1 very slow gay gordon's), but the number of people, the heat in the hall, and general social interaction must have just taken its toll. I started to feel a little off. Then the panic set in. What if my legs go? How will I get home? What if this is another setback? . . . etc.

For me panic is the worst aspect of this illness. It has completely changed my personality. Before I became ill I was confident, outgoing and relaxed in most situations. Now, when I don't feel 100%, I turn into a nervous wreck and don't want to be anywhere but home where the sanctuary of bed is not far away! When I get home, I loosen up, relax and start to feel better almost immediately. The symptoms might not go away, but my outlook definately changes. I know that if I do take a bad turn, I am in a safe place.

Therefore, although I don't think CFS is a purely psychological condition, I do believe that there are psychological aspects to it and this is something that I am trying to deal with.