It has been another up and down week, thanks largely to my overzealous activities last weekend. By Monday afternoon I was shattered, and slept all afternoon. This is still a problem I am having while I'm in this "in between" stage (I like that term; not yet better, still a little bit unwell). I know I need to get back to doing normal things, but pacing myself and setting realistic limitations is difficult.
Wednesday was going to be a big day no matter what, as we went to see my neurologist. He is happy with my progress, particularly given how far I've come. I still had a slight nystagmus, and the ataxia is there, but my reflexes had improved. He is still optimistic of a good recovery. He remarked that some of the symptoms may be from withdrawing the medications. So he wants me to stay on the dex until I see him again (in another month) and to reduce the serc. He mentioned that the epilim is known to bring out a pre-existing hand tremor, which is frustrating. I actually worked out tonight that it is more in my thumb than my hand. When I isolate the thumb movement it is quite extreme. I am going to have to look up my hand therapy books and work out what I can do about it as it is a bit limiting (particularly when I'm tired).
Once again my neurologist reiterated that it will be a few more months before the fatigue eases. We also had a rather depressing conversation about some long term consequences/outcomes of this type of tumour which are bothering me, and will probably involve further testing in the very near future. In the meantime, I have my follow up MRI booked for 2 weeks time.
Saturday was the bad day this week. I had had a bad nights sleep this week; Angus has been up a few times during the night, and on Friday night Charlotte had woken crying her eyes out saying that she had had a bad dream, that Mummy went back to the hospital. sigh. She wouldn't settle until she came into our bed, and even then she would drift off to sleep, then startle awake every few minutes and reach out for me. So I'm not sure if it was because I was overtired (I'd also managed another trip to the gym on Friday), but Saturday morning, within the space of 15 minutes, I went from feeling great to increasing fatigue, nausea, vertigo, and vomiting. I was wiped out for the rest of the day although we did manage a trip to the park which was lovely.
This is what I am finding so frustrating. Never knowing if today is going to be a good day or a bad day, or how tired I'm going to be. I know it will get better, and that I need to take one day at a time. So today I am grateful for a good day. It was beautiful weather so we went to Queen's park for a wander around to look at the animals which was lovely. This afternoon I manged to potter around doing some cleaning. Such a change in two months. Here is hoping that the next two months brings more good days.
|Having fun at the park|