March 30, 2013
The Brain Game
One of my biggest concerns of late is the way my brain seems to be more discombobulated than usual. I’ve been feeling like I’m forgetting things, I feel like I’m disorganised, I have A LOT of trouble finding the right words. I know exactly what I’m saying and then it’s completely gone. I’m not game to greet people by name because I’m scared that when I say their name the wrong one will come out.
I feel incredibly lucky that I manage to work 4 days a week. One day I’d love to do some post graduate study but my biggest goal is to not have to reduce my current workload. I’m currently doing a short course for which I’ve already had an extension. I’ve never had to ask for an extension in my life before (that I can remember, but certainly not when studying). As it is, the work is due in about 10 days and I’m hoping I get there. But instead of focusing on studying my brain has decided it’s going on an organisation rampage. I have cleaned out my medicine cabinet, cleared off the papers that have been piling up on my kitchen table for the past 6 weeks, rearranged the things on windowsill above my kitchen sink, cleared off my coffee table of further papers, reorganised my bathroom cupboard and started writing a blog post. And gotten way off topic (something else my brain is doing more and more of).
Having to cut back my work is a huge fear. Without work I wouldn’t be able to pay my mortgage, I wouldn’t be able to afford some of the energy saving strategies (namely cleaner, lawn mowing man, home delivered healthy meal and groceries) not to mention some of the luxuries, the distraction from illness it provides me with and the fact it gets me out of the house. I spoke about this fear with a return to work officer at work and she suggested getting some cognitive tests done to see if there were any strategies that I could use to help me at work, and then discussed it with my psychologist who provided me with details of a neuropsychologist who she thought may be able to help me.
The Neuropsychologist was so lovely and helpful. She offered to meet with me, free of charge, to “have a chat” about my concerns and to see if there was something worth investigating. This “chat” ended up taking an hour of her time. She said that she’d like to do a range of tests as the problems I was having seemed to be broad, and as I was still able to work in a high functioning position she thought the changes were likely to be subtle and therefore difficult to find. We made plans to meet three more times. She asked if I’d mind if a final year student completed the first test. Working regularly with students myself I had no problem with this and told her it would be fine. She then told me she wouldn’t charge me for that appointment either (apparently the university paid her for that time so she didn’t want to charge me as well). I assured that that I didn’t mind paying, after all she’d still be working with the student on the analysis. She wanted to do a second lot of tests with me herself (the first time she was going to charge me) and then on the third occasion she was going to give me some feedback.
The first assessment went for two hours. It involved all sorts of tests, all starting fairly simple and gradually getting harder. It was really difficult to assess how I was doing as I expect that some of the tests were supposed to be too hard to complete. In one I was read a long list of word pairs. Some of the pairs seemed to go together, and others didn’t. Then I was given one word and had to say the word that matched. This was repeated using the same list of words several times and I actually found it fairly easy after the first round. Another that involved memorising patterns and positions on a grid was horrid. I am sure I didn’t get a thing right as I was completely guessing for the most part. My brain must have been working hard because the next morning getting out of bed was more of an ordeal than usual and I was extremely grateful that I didn’t have to go to work.
When I arrived at the second assessment the neuropsychologist told me she’d been doing some research into cognitive changes and ME/CFS and she was coming up with very little specific information. She was hoping that there would be some research that would help her guide her where to focus the tests. She’d gone through all of her references, done a literature search and had sent out an email request to all of her colleagues. She said that while it was clear that cognitive changes occur in ME/CFS, no one could tell her whether this was generalised “change” that varied from person to person, or if there were specific areas of the brain that appeared to be affected.
At the end of this second visit she told me that there were a few more things she’d really like to assess before she gave me my feedback, because once again things were not particularly clear and further information would be helpful. By this stage I had started to think that maybe it was all in my head and that there actually wasn’t anything wrong, that maybe I was just over reacting; that I really was just disorganised and not as smart as I thought. She kindly offered to come in on a Saturday and once again didn’t want to charge me for this extra appointment. In the end we combined this last assessment with my feedback session (so I felt better because I had paid for that).
One of the tests she did on the last Saturday involved me having to say out aloud words starting with a specific letter. This was done with three different letters. I had a minute to say them, and there were to be no proper nouns, no numbers and no repeated words, or words derived from the same word (eg. If I said bite, I couldn’t then say biting or bitten). For one of the letters I could only come up with 6 words, and in the last 30 seconds I couldn’t come up with any!! Surely not normal.
After finishing off the tests we went through some of the results that she’d already analysed. The results showed that I most definitely had a slowed processing in my brain. When she had tested my IQ (I didn’t even know she’d tested it) my knowledge was quite high, but my working memory and processing were really slow, quite below average. She said that what she believes is happening is that the brain fog really is slowing my brain down. The electrical impulses that occur when we think have slowed down and this actually explains a lot of my cognitive symptoms. It takes me longer than it should to come to the right answer, but the answers are definitely in there. What I see as “forgetting” is really me not allowing myself enough time to remember, as it takes longer than it used to. The word finding is difficult for the same reason. If I’m not planning what I’m saying ahead of time the words get lost. I am losing things because I’m either not giving myself the time to initially absorb where I’m putting things, or I’m not allowing myself time to remember where it is before getting flustered an confused. She asked me if I’d mind if she discussed my case with a group of her colleagues to see if they interpreted the results the same way (which I am more than happy for her to do) and has assured me if they come up with anything different or new she will let me know.
And what can I do with this new finding? Not much. Unfortunately processing is purely biological. All I can do is compensate (I interpret this as – allow more planning time) and, well, be less tired. And if I knew how to fix that one I wouldn’t be having the problem in the first place. But there is an element of relief that the information is actually in my brain, I’m not stupid and I’m not forgetting things I’ve learned of the years, and most importantly, it’s not all in my head (well, it is, but you know what I mean).
March 22, 2013
More Sleepless Nights
For months I’ve been trying to work out what might be increasing my symptoms these last 9 months. One and a half years ago I started taking low dose amitriptyline to help me sleep. Before taking it I had no trouble falling asleep but I’d wake on and off throughout the night, sometimes lying awake for hours. Once I started taking it I still would wake once through the night but I would fall straight back to sleep.
Recently I wondered if maybe it might be behind some of my fatigue. Maybe it was causing me to be foggy through the day. A few different people have suggested that at the dose I was taking it really shouldn’t be causing problems. Amitriptyline has other uses and when used as an antidepressant it is given at much higher doses. At the low dose I was taking there shouldn’t be any issues. I was still curious. I don’t think I have any issues with tolerating medications and chemicals that other people with ME/CFS have but maybe the reaction for me is subtle.
I had a chat with my GP, and I also asked about high dose melatonin. She was more than happy to prescribe it, however given that melatonin works by resetting the body clock and I’d been sleeping well for 18 months I shouldn’t need it. My body clock should be reset.
That night, and the following six, I cut the amitriptyline tablets in half to reduce my dose. I was sure I was on a winner. No change to my sleeping pattern. I was falling right to sleep at night, then waking once through the night and then waking up with my alarm. The waking was as difficult as ever, but it was no different.
The next week I cut out the tablets. For another week things continued on the same. Wake once, then straight back to sleep until my alarm went off. I even slept well through the heat when everyone around me was complaining of sleepless nights. But last Saturday morning I woke at 1am. Then again at 4am. And then I didn’t go back to sleep for an hour and a half. The result – complete overwhelming fatigue and pain. The kind that makes you feel nauseous, that sits there in the forefront of your mind stopping you from being able to distract yourself with anything else. The next night I was back to my usual “wake once and go back to sleep” routine so I decided one night of poor sleep isn’t enough to change go back.
Then Tuesday morning I had a repeat of Saturday morning. Not so easy to cope with the overwhelming fatigue at work. It reminded me why I’d gone on the amitriptyline in the first place. This used to happen so frequently that I was struggling with work; but one day I should be able to get through.
It was the second replay on Thursday morning that changed my mind. Three sleepless nights out of six compared to I think one in 18 months is pretty clear that the amitriptyline was doing some good. Even if there is a little fogginess (which I don’t feel reduced at all, but I don’t know how long it would take for it to completely get out of my system), the fogginess is actually easier to work with than the severe fatigue, nausea and radiating pain I feel after the days is a thousand times harder to live with.
So last night I put myself back onto the amitriptyline. I had a good night’s sleep and I think given a few more I should be back to my normal, or at least my most recent normal, and I’ve crossed one more theory off my list.
March 11, 2013
A Week in Review
I’ve had a busy week, which has been both good and bad, and with the current heat wave and humidity my brain is just not working.
- I think I have a new symptom. Nausea. I’ve had it off and on for a week now. A friend who works in chronic pain management tells me that nausea is often decreased if you can manage to distract yourself with thing you enjoy. Makes sense – the worst of it has been during long meetings.
- I had to work for a day on the other side of the city in preparation for some students we have starting with us in a few weeks. It’s a 1½ hour drive one way if you get a good run on the freeway. Instead of putting myself through 3+ hours of driving I took the opportunity to have a catch up with a good friend who I’ve been trying to catch up with since Christmas.
- I had the opportunity to spend some time with some academics in my profession. I’d really love to do some further study, it’s something I’ve looked into off and on over the past 5 or 6 years; but I don’t think my brain would let me, especially at the moment.
- I finally took the step of calling the office of my specialist. I was expecting to be told that either they weren’t taking new patients (and given that it’s been at least 4½ years I expect to be a new patient) or if they were there would be a 6 month wait for an appointment. It turns out that I was right that he isn’t taking new patients, but I’m still in their system so they booked me right in…in a month’s time!!
March 2, 2013
The Miracle Question
Have you ever been asked the miracle question? It’s a question that my psychologist asked me, that many psychologists ask. It can help with goal setting, with identifying what you want to achieve.
Suppose tonight, while you slept, a miracle occurred. When you awake tomorrow, what would be some of the things you would notice that would tell your life had got better? And what would you do?
For me, the first sign something was up would be I wouldn’t feel more tired than when I went to bed. In fact, I wouldn’t feel tired at all. My limbs wouldn’t ache, it wouldn’t hurt move. I could move my fingers easily, then my arms and legs. There would be no nausea. Instead of having to gradually prop myself up, one extra pillow at a time to try to let my head adjust to being upright, I’d just get out of bed. In fact, I’d feel so good I’d go for a run before breakfast.
After the run I wouldn’t feel like I’d been hit by a truck, I’d feel energized. I’d have a long hot shower and I wouldn’t feel breathless, nor would I need to lean against the wall to make sure I didn’t fall over. Afterwards I’d make a great tasting breakfast, whatever I felt like. It wouldn’t matter how long I was going to have to stand to prepare it, or if I had all the ingredients. I wouldn’t have to think twice about going to the supermarket to top up on what I needed.
After breakfast I’d go shopping. Instead of going in with a plan and sticking to clothes that I knew I needed, I’d try on all the gorgeous dresses and shoes, just for fun and to see if the different styles work for me. No need to worry about standing or moving up and down. I would be able to browse. Slowly looking at everything, smell the fragrances, feel the different consistencies. I wouldn’t notice all the noise. I wouldn’t have to walk past shops that m ake me curious because I would still feel great.
When I got home I’d read. Not just some easy to read chick-lit or magazine. I’d read one of the books that require me to think because I wouldn’t be forgetting what I’d read by the time I got to the end of the page.
While the sun was out I’d weed my garden because no longer would my head be spinning when I bent down to pick up the weeds. I wouldn’t stop until I was done, and the weeds would be thrown away, not left in a pile for the next time I had some energy to spare.
I’d paint my hallway, and replace the doors on my front cupboards. While I was at it I’d replace the light fitting and the front door.
Later on, I’d be ready to bake. I wouldn’t have to choose simple quick recipes. I could do something complicated and beautiful. It would have layers and many textures; and I could eat it without worrying about the sugar crash afterwards. In fact, I’d probably turn it into a bit of a spontaneous get together by inviting my friends over to share the food because socialising would be easy. Conversation would flow and I’d be witty. I would think of the great one-liners on cue, not half an hour later.
The night would linger on and we’d go out for drinks. I’d be wearing heals because my legs would still not be aching, and I wouldn’t be struggling with balance. I wouldn’t be choosing the least expensive option because I’d be working fulltime and therefore I’d be able to afford a few indulgences (and this is a miracle). I’d stay alert all night, and mingle rather than sitting catching my breath in the corner, watching what’s going on.
When I finally am ready to go home to sleep, I fall asleep right away. My sleep is restful. My kidneys decide not to go into overdrive and fill my bladder waking me throughout the night. I sleep the whole night through. There are no weirdly vivid dreams, I won’t wake sweating and trying to work out whether what just happened was real or not, and if I do dream, I won’t be exhausted in my dreams.
And who knows, maybe I’ll awake to another miracle day.
Living in Dreamland 