17 months on

[Blessed]

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...

[subzero]

Hello and a very warm welcome to BTG.

 

Please don`t apologise for the length of your first post. We welcome you giving such a clear picture of the events surrounding your SAH 17 months ago and how you have progressed since then.

 

While we do not give medical advice, you will certainly receive very genuine support and advice from our members, all of whom have their own very unique journeys of recovery. Reading their input into the various forums will help you realise that you are not alone as you deal with life post SAH, and they will try and answer any questions you may have.

 

You certainly have had a tough time in these early months and your family , as you say, have lived through so much emotion as they have `willed` their mum and wife to show signs of recovery. We can imagine their relief and joy following your later surgery in September last year. 

You have indeed made a great recovery since then. The holiday in October was a brave but important step for you all. Well done as going in an aeroplane can be a very daunting prospect, not to mention the possibility of issues arising while you are far from home. 

 

You are not alone in finding that you are faced with fatigue, headaches, low morale and your family may notice that aspects of your personality have changed. Time and the great family support you are already experiencing can greatly help as you try and deal with these challenges.

All of our members have faced and continue to be challenged to differing degrees by the effects of SAH. A few of our members are living with shunts and they too will be pleased to offer their help.

 

Returning to work is also always a big step. So glad that you have understanding employers who allow you to phase your return. It is so important that you never try and over step the new limits of your body and brain. Both are going through a long healing process. Have patience and rest plenty at work  and at home. Always remember to keep well hydrated which is so important.

 

We are sorry that you have also had to deal with the loss of your dear father earlier this year. 

While this was a big setback for you it is good that you have challenged yourself to go on and be positive for both you and your family. You really do have so much to live for.  You have been fortunate.  A large percentage do not survive SAH trauma.

It is good that you feel your faith has been important to you over these months. 

 

Please take time to read the various forums, and your husband would also benefit from the wealth of information they contain. Living proof of survivor journeys post SAH.

 

I wish you well and look forward to hearing of your progress in the days, weeks and months ahead.

 

 

Subs

 

 

[Tina]

Hi Blessed  

 

Thank you so much for sharing your journey on your 17 months Anni-versary and a very warm welcome to BTG.

 

Wow you have really been through it, also your lovely family, but so good to read how far you have come. Well done you  

Here's to many more good days than bad !

 

Look forward to hearing more from you.

 

Take care

Tina xx 

[Chris G]

Congrats Blessed !