So far I have used this blog to keep people updated on my progress as I prepare for the Brighton marathon. But this afternoon I thought it would be good to share how Sam has been for the last couple of days, after all, she is the reason I am doing this!
One of the symptoms of both multiple sclerosis and stroke victims is fatigue. As Sam has ticks against both it is difficult to blame one or the other for her fatigue. However, she does suffer.
Thursday morning and Sam had to get up for a 9am blood test – not that early you might think, but for Sam it meant getting up an hour earlier than her alarm goes off and quickly getting dressed then going for the blood test and having a shower and more importantly breakfast. This was very tiring for her so the afternoon was bed for an hour or two. She then had an early night to prepare for Friday.
Friday was her four weekly Tysabri infusion. This involves going to Southampton General and being ‘wired’ up for an hour and a half to enable her MS drug to be pumped into her. The good thing about this is that the drug appears to be working and almost as importantly, she sees the same people each four weeks and it is almost more of a social gathering than her treatment session!
They are a very friendly bunch and make us both laugh but also make you realise that you aren’t so special or different and others are going through the same things as you are. I should also mention how good the hospital staff are – they have been fantastic for Sam right from day one.
Anyway, back to fatigue! The infusion is very tiring for everyone – even I come away tired! We try to leave home at just after 10 o’clock and we get home at about 2. Sams routine is to get home, have a cup of tea, then disappear to bed until 5 ish. Sadly this week Sam was more tired than usual, so although she got up and we had our usual treatment tea (fish and chips from the chippy) she was not herself. She was suffering from fatigue. So another early night ready for Saturday.
Saturday, and Sam had a MRI scan. Again at Southampton General. Her appointment time – 8:30am. So a very early start for her. I had bought a pre-prepared fruit pack so she could have something to eat en route. It was a fairly short appointment, just 30 minutes. We stopped off en route home to get some fruit and veg in Stubbington, and even had a treat of breakfast in the bakery. We were home by 10:30. Off Sam went to bed. I left her to rest, even going for the run I blogged about yesterday! She got up at about two for some lunch. I then went out for an hour or so and Sam went back to bed.
When I got back at about 5ish, Sam was barely awake. She sat in the lounge whilst I watched some football, again barely awake. She managed to come to for dinner and then to watch a film (Drive – very good.) but then at about 8:30, that was it, she needed to go back to bed, she was exhausted.
Today. She woke up at about 9:30, said good morning then fell asleep again! She managed to get up at about 11 o’clock and we popped out so that she could get some fresh air for an hour. Now, she is back in bed.
Throughout these couple of days Sam has not complained once. She has apologised for being no fun. She has also apologised because we couldn’t go to Owens little bash last night. And that sums her up, never complaining and always concerned at how it affects me. Fatigue is one of the two key issues that Sam has, the other being vertigo, more about that another day.
Well, we are back to the usual routine tomorrow and Sam has nothing planned for two days so hopefully she can rest and recover from what has been a very tiring couple of days.