Personal experiences

Individuals have volunteered to share their own personal experiences, whether they be a patient or a relative.  Often people find it beneficial and reassuring to hear about the personal experience of others. It may be useful to remember that everybody's experience is very individual. 

Personal accounts of recovery from SAH

When people come out of hospital having experienced SAH, they can sometimes feel very isolated, vulnerable and frightened. Here are some quotes from previous patients who all were speaking about their experience after they had gone onto make a very good recovery (at least 18 months - two years on from their hospitalisation)- the quotes are associated with various common symptoms and hopefully reading them will enable you to gain an insight into what to expect in a normal recovery:

Fatigue

"The biggest problem was I got very tired and it is a tiredness that you cannot explain; your body feels like it is made from lead"

"People used to think I looked really well, but if I did anything such as wash the dishes, the tiredness was unreal, it was unbelievable. I slept lots, I wasn't able to do what I was able to do before around the house, I hadn't the strength."

"Recovery is a slow process because you have to find new strategies of dealing with the fatigue."

Feelings of vulnerability/lack of confidence

"I felt very secure in the hospital so coming home was very scary. I thought 'Oh God, I'm on my own I'm out now. Will it happen to me again?'"

"I felt slowed down, very weak and vulnerable – everything was in slow motion, my brain felt slowed down, I was clumsy and could only do things at a slow pace. If anything moved quicker than I could cope with, then that would upset me."

"When I began to work, it was a frightening experience – I had such a massive lack of confidence and inability to remain attentive that the quality that one describes as 'thinking on ones feet' was completely absent. I couldn't remember things or if I could, I couldn't express them"

"I felt vulnerable....without a doubt my confidence was affected. I didn't know if I could pluck up the courage to go on holiday because I was frightened of it happening again."

"I had to build up the time I spent alone. I had no confidence at all. I couldn't speak to people, I knew I was mixing up my words, I wasn't confident even in speaking to relatives. Being so weak also made the confidence less as did the not being able to accomplish simple tasks."

Emotional difficulties

"In the early days, I was hypersensitive about my own well-being. I was very emotional and would get upset even just watching the news."

"I realise now that nothing bad is going to happen - it took me fifteen months. I know I am still improving."

"Once home from hospital, I was very irritable especially with my husband – I couldn't understand it but I felt my temper was very quick."

Expectations of recovery

"I expected that I would be totally well in no time, just back to who I was before. My expectations of myself were far too high I wanted to return to who I was instead of adjusting to who I am."

"I was angry initially because I always thought that when you came out of hospital you are better but I wasn't. This experience has changed the way I think about that – just because you are out of hospital doesn't mean you are completely better."

"I thought that within three months I would be back to normal. As time went by, I realised it would be a very slow process. I thought the kinds of problems that lingered for that long were physical ones that you could see – but you don't have to be visibly ill."

"I was permanently tired – simple tasks like getting washed and dressed would wipe me out and I couldn't understand that. I didn't expect to be back to normal straight away but also I didn't' expect to be like that – I didn't think it was normal."

"I couldn't wait to get out of hospital, I couldn't have stayed another day but when I got outside, the fresh air nearly knocked me over because I had been in hospital for so long. When I got home, I couldn't do anything really – I was so tired – I was so very weak. I could hardly walk, even just into the kitchen."

"The first time I went out was to walk a distance of about 75 yards and my parents didn't want me to go but I wanted to do it, not thinking their concern was well founded. I was physically wobbly; I took an umbrella with me and bent it because I had leaned on it so much."

Fear

"What really frightened me was that I didn't remember anything about it. I wanted to know what had happened and so had lots of questions for everyone – I needed to find out what I'd been through so I could make sense of it."

"I experienced three or fours episodes where I really thought I was going to die. I had cramp in my neck and this feeling shot up the side of my face and head reminding me of the original pain I got when I had the haemorrhage and the recalling of that was very frightening. I was terrified of dying and I never had thought before of this in my life. I was so scared. I thought there was something wrong again. I was misinterpreting symptoms of healing – there was a great sense of fear early on particularly the fear of another haemorrhage."

Memory problems

"I would forget things just walking from one room to the next. I would forget what I'd gone there for. I would talk to myself just to try and organise myself. Tasks like making a cup of tea or having a bath seemed overwhelming to me at first."

Lack of understanding

"People wouldn't understand why I was still convalescing. People who weren't close to me didn't see the physical weakness and emotional difficulties I was suffering."

"My doctor would say he wasn't able to give me the answers to my questions. He didn't appear to know what was going on. My whole experience was made worse by the fact that when I sought advice from people who I expected to have the answers; they were actually as ignorant as I was. I thought I was mad or weird."