It’s been 17 months since my bleed but only one year since I was discharged from hospital after my last operation. It has been a challenging couple of years. I only stumbled on this group a few days ago and it was good to come across others who have been through a similar journey. Sorry for the long Message but a lot has happened in the last 18 months.
I don’t remember anything from just before the bleed in April 2019 till my last operation in September 2019. Some of the blanks have been filled by my husband and children but they don’t like talking about that period as it was a painful time for them. So it’s a mixed blessing to not remember the pain and agony that I went through during this time.
During that time I went through several operations including a couple to put a coil in to stop the bleed and another to put a shunt in as I had developed hydrocephalus. They initially put in a fixed pressure shunt but my body did not adjust to the pressure and resulted in over drainage which meant my brains started drying up and collapsing. This caused further bleeds. They decided to operate again and fit me with a variable pressure shunt. That was in September 2019. I was finally discharged from hospital a couple of weeks later. It’s after the final op that I regained awareness and my memory was back so I have memory of everything from September onwards.
The blank period of April to September is interesting. I was apparently hallucinating a lot during this period and had no concept of time. My children and husband tell me that my character had changed completely, I was apparently very mean and had no filters! I have a high profile job so tend to do a lot of long haul travel for work. Apparently during my time in hospital I was hallucinating I was travelling to different countries. I would be adamant that I was in a hotel in Switzerland/South Africa/India and could not accept the nurses telling me that I was in a hospital in London. Anyhow, I can laugh about it now with friends who tell me that I would send them text messages saying that I am in a party in South Africa...lol!
When I gained awareness in September, I had been in bed almost 5 months. So I had to relearn how to walk and use technology such as my mobile phone all over again. It’s now been almost a year since the last operation and I consider myself really blessed to have not only survived the bleed but to have come the other side with only minor issues. I am still not steady on my feet and my memory is not what it used to be but it’s a lot better than where it was in September last year. I still suffer from high blood pressure (despite not being over weight and I don’t smoke or drink) and I will be on blood thinners for the rest of my life.
I was able to return to work in November on phased approach. The company that I work for has been great, they have been really understanding and flexible, couldn’t ask for anything more. I even took the plunge and went on holiday to Spain in October, only six weeks after the operation. It was good for the family to get away and forget all that we had been through.
I struggle with some really low days and the Covid situation has not really helped. I lost my dad in April this year due to Covid and I have found it a real struggle since he passed. He was suffering from dementia for a couple of years and was in a care home. After losing him, I had this feeling of futility of life. Sometimes I wonder if it would have been better to go last year. Why prolong life, only to end up suffering like my dad did at the end?
However, despite the low days, I know I am blessed as I have a wonderful supporting husband, amazing children and really supportive family friends and colleagues. I have truly felt loved and supported. Another really positive for me is that my faith has become stronger. I always believed in God but was less practising of my faith in recent times due to work/family commitments but this was a wake up call that life can end at any moment so I need to be on good terms with my creator. I truly believe that this life can’t be it, there must be another purpose why we are here. There must be a reason why we go through all this struggle in life. Therefore, I need to prepare for the next life as much as I prepare for this one which is only temporary.
I read about an interview with Anthony Hopkins this week where he described life as a terminal condition. Being in his 80s I guess he is thinking more about death now. But I knew what he meant. No matter how long we live, we will all expire one day. I am only in my mid forties so don’t want to constantly think morbid thoughts but my experience last year and my father’s passing this year has made me think more and more about how fleeting life can be.
so I am trying to take it one day at a time for now. Like everyone, got some good and some bad days but hoping to have more good days than bad as time passes...