Apologies…. bit of a long one!! Bonus points available for anyone that makes it to the end!!
This is one of the questions that I dread since being ill.It feels like such a loaded question which can be so difficult to answer as well.
Ok, I understand that I am resenting people who are trying to be caring and show concern. However, a lot of the time people want a simple, short answer and that’s not always possible in my situation.
Do I answer it based on how I am that day? i.e. today I’m pretty tired, bit rashy and feel like i need to sleep for a few days to feel human again, but tomorrow things might be loads better or loads worse.
Do I answer based on a summary of the last week/month? Generally this ends up with saying that things have been up and down, or last week was horrible but I’m feeling better, vice versa. This is usually the approach I take.
But there is more to it than this. For a start people tend to only see me on a good day. When I’m not as good either mentally or physically I tend to hide away a bit. Equally I am very stubborn and when with friends I like to keep up with everything they are doing, or try and be the ‘Emma’ I was and want to be before I’m ready. Therefore people will start to assume I’m getting better and possibly wondering why I’m not back at work. But they don’t see me suffering the day after. They feel how pooped I am after that yoga class. Equally if I say “I’m well” then this is in perspective of my bad days, which is probably completely different to what others would consider a good day!!
So how am I today? I’ve already said I’m tired physically. But I am also tired emotionally, possibly a bit overwhelmed. A lot happened today!
I went to Cromer over the weekend with friends (I will do a separate more positive post about that when feeling a bit more positive as I had a fantastic time) so consequently I am tired from all the crazy activities
I then went to London today to meet up with my manager (or manager’s manager really!) for lunch and to discuss what has changed at work and how things are looking my side. The aim I had was to be looking to start part time in September, but I would ask m consultant again today for her advice. I also had a wander around the new 5th floor where my team sits and said hello to old work friends. It was fab to see everyone, but I almost felt like a new girl with all the new faces and being shown around the new floor. And as you can tell from above all the “How are you?” “When are you back at work?” became a bit overwhelming.
It also brought back all the memories of working in the office. Mostly good memories, but also stressful memories. It reminded me of what my like was like nearly 10 months ago! Left lots of questions; Do i miss it? How soon do I want to go back? Am I ready? And made me realise how much I miss these people and the atmosphere of a working environment!
Then I went off to the hospital for blood tests and consultation. My blood test results weren’t great as I am again neutropenic at 0.53. Got the ole GCSF injections to try out again and see if we get an improvement. Been tested to see if the CMV levels have come down, but won’t get the results till end of the week.
I then asked my consultant her opinion on me going back to work. She said the normally advise a minimum of 6 months, which takes us to July. However, because they haven’t managed to decrease my immune suppression at all (in fact they have increased it to avoid GVHD) and because of my CMV reactivations she advises for me to be signed off for a year post transpant. Even then she ideally doesn’t want me to be commuting during winter due to all the bugs, etc.
But staying off till the end of the year feels a lifetime away. I feel I might lose my marbles.
So yeah – today has been a bit overwhelming with lots of different emotions running around and now I’m not sure how I feel! Think I need a few days to digest all this and determine how I feel about it!