I thought I would give you an update on our situation. And I would also be interested if some of you feel the same as my husband does.
So he got his first infusion on Monday and we drove straight home after that because he was very tired and sleepy.
He has been very exhausted every day, but we go out every day at least for a little walk. He has also been experiencing nausea and we are glad he has Maxolon, the anti-nausea medication.
There are two things that are a little worrying:
The first thing is that, although he is very exhausted, he can't really sleep at night. Restlessness keeps him awake. He has to get up to make cups of tea, drink a glass of milk in the middle of the night, etc. Do you experience this restlessness? Perhaps we should just go for longer walks to make the body more tired? But then his nausea increases.
The second thing is that he can't really keep his weight. He was 59 kg when he got his infusion and, since then, goes between 58 and 56. He is drinking two Fortisips per day and tries to eat normally.
So, as you can see, we are finding our way into this new situation.
As the wife of a man with this disease I must say that I find it heart-breaking that I have to encourage him to do things he doesn't really want to do or feels he can't really do. So, for example, he would say to me that he can't drink another of those Fortisip drinks because they are very heavy, but then I encourage him to do so and say that we need to keep his weight up. Or I encourage him to drink enough water, something that otherwise he might forget or put off.
Today we have an airshow taking place here in Bray. My husband loves that, and we will try to go and enjoy a bit of sea air at the same time.