I think I feel confident enough now to say that my health has definitely improved since the Ferinject treatment. It’s hard to quantify the improvement – I’m certainly not fully recovered, but I do feel better than I did two months ago and I no longer feel as though I’m in a continuous downward spiral. Maybe 30-40% of normal (whatever that might be for me at 56) instead of 15-20%.

With a fluctuating illness it’s difficult to create benchmarks to measure progress against. It also takes a while to trust that perceived improvements are real and sustainable. Especially on day like today when I actually feel fairly grotty! Still, it’s been six weeks since I had the treatment and I thought it’s time to make a note of some of the changes I’ve noticed:

1. I’m doing my own housework instead of relying on a cleaner – last week I hoovered the whole house in one session! That was actually a bit much and I felt rough later in the day, but it didn’t take me a week to recover.

2. I’m going to the supermarket myself again instead of having deliveries.

3. I’m able to do something relatively strenuous (by my low standard) two or three days in a row instead of, at most, every other day.

4. I get dressed pretty much every day (before Ferinject I spent two to four days a week in my nightclothes to save the exertion of dressing and undressing).

5. I’m able to go for a short walk four or five times a week in addition to any other activity I’ve done that day.

6. I feel less depressed, irritable and grumpy.

7. I’m sleeping more overall even though I’m often woken by hot flushes.

8. I recover more quickly when I overdo it. Feeling wrecked in the evening no longer means that I definitely feel dreadful the next day as well.

9. I’m gradually working through a number of non-essential but important tasks that I put off last year because I needed all my energy just to do the basic necessities.

10. I can make small plans for the week and be reasonably sure that I’ll be able to carry them out.

Wow! Does that sound exciting or what?! To be honest it’s all taken me somewhat by surprise. Obviously I hoped that the treatment would benefit me, but I didn’t really give much thought to what “feeling better” might actually be like or what I would do with it!

A few things are clear: I need to unpick old pacing and activity rules and develop new ones. I can do more things, so I have to make more decisions. I’m extremely weedy through lack of exercise, so I must exercise (gently!) to build up wasted muscles. I have to learn to trust that it’s OK for me to push myself a bit.

At the moment I’m not inclined to make too many plans. I’ve got plenty to do catching up with all those undone non-essential tasks and building up my physical strength, so that’s what I’m focusing on for now.

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