I went home from hospital reluctantly after almost 3 weeks. I was afraid, I was weak and extremely de-conditioned. I didn’t understand when they told me how long it would take to recover.
A nurse came to give me more intravenous medication in our house for a few weeks. It was a very, very slow road.
I have two boys, they were 5 and 7 years old then. It was very hard on them and my husband. The boys thought I would be the same mum because, “I was better and home from hospital".
It took us all a long time to adjust. I was in bed for a long time. I would come downstairs for short periods and when I felt overwhelmed with everything I would need to go back upstairs for some quiet.
Over the weeks /months I slowly progressed. The months were peppered with consultant appointments, scans and referrals. I began to keep a sort of log so I could keep track of appointments and on top of the doctors! But I found it also helped document my progression. On the days when I felt really low, depressed and upset I would read over how I had done up to that point and recognized that I HAD moved forward. I got frustrated with the pace.
I got frustrated with many, many things. That I looked "fine" on the outside, the months had passed and I felt there was an expectation from others that “I was better". I was frustrated with the pace and that I was overwhelmingly exhausted after the smallest task. Months went by, I realized I had to be kinder to myself, give myself the time to recover, and resign myself to the fact that it was all going to take TIME. Family and friends were amazing, my job very supportive. I know I am incredibly lucky.
I returned back to work gradually (on small hours) after 8 months. It took almost a year and a half to return to a full day’s work.
I am aiming for a better work/life balance now. I work alongside a colleague who is also incredibly supportive.
It will be two years in February 2018. I still have appointments and scans (but less consultants! ;).
There are side effects - short term memory loss, not feeling sharp, can’t remember words sometimes, words get jumbled, occasional/popping pain in my ear, pain behind my right eye (after the Grandenigo Syndrome)