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When I was back in hospital in 2012 I was pretty destroyed if I am honest. I had my grade 4 event, grand mal seizures, acquired hydrocephalus , EVD surgery, coiling surgery and , endured the weeks of intensive care, of hospital stay. It was a long 7 weeks before I was allowed home and then when I did get go to home I could do nothing. I had sitters, I couldn't Cook, wash, sleep normally, let alone do any of the grown up things like look after my young girls or cook, work, or drive. I was 39 years old. But I tried to start putting the pieces back together but three months afterwards ended up blue lighted back up the M1 to my treating hospital with dangerously high level pressure of hydrocephalus. Numerous lumber punctures followed, some falling out of my hospital bed, the odd bed pan hilarity all led to my then having further surgery on my traumatised brain and a VP Shunt fitted. It was awful. I remember this time vividly. I have never felt such pain tbh, I was so ill, fair few near death moments, but again I was one of the lucky ones, I came home. That time, that new birthday started 8 years ago today. International women’s day. A time for looking forward and so have always tried to do that since. I started blogging after having my Shunt placed and still in hospital and found BTG not long after I got discharged before that I couldn't read a screen or at all if I’m honest, I had hidden the effects of the hydro so scared I was of going back in. So I blogged today about a few learnings. https://popgoestifty.blogspot.com/2020/03/annie-versary-post-transformation-and.html I have regained so much my fellow BTGers from that day but have also adopted a new style of being. No rush, try not to ever worry, about what I can’t change, lean and try and accept the pains in life and hope they will pass and mostly just enjoy this day. Even if all you can do today is wash your hair then that is an achievement as I know how it was not to be able to. Celebrate and see the good and the possibility and go steady. And reach for Help. BTG has been here for me along the way, someplace I could ask those question that’s filled me with fear, where I could tell someone else, hey that ‘s ok or me too , and where I allowed myself to adjust to a life’s that changed forever in the instant and go on from that. Privileged to be part of the gang. As Win would say I think, I gave myself permission to sing again...or maybe she did!! Go steady everyone Daff x . Postscript, my post SAH life continues to unfold, twist and turn, in the years since my girls have passed exams, with one about to start to drive, I have lost my darling mum, two aunties and countless friends through illness, I am back at work doing a job Im good at but done to my limits and I have got three dogs now, and the latest is a corgi puppy ( cuteness overload) into the mix so I walk everyday with them and am better for it. I struggle with memory but have prompts everywhere and by phone an day have retrained my brain to remember stuff differently, I am kind to myself, if I mess up that’s ok and I struggle daily with fatigue. But on the whole still Improving and a complete transformation from 8 years ago. Keep on keeping on
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It seems a long time ago when my brain sprung a leak but my memories from that day, the days in hospital afterwards, and at home recuperating, are still very strong. I had no concept at the time of a long term recovery. In fact I thought 'no problem, I'll push through this' and get back on with my life like nothing has happened. Wrong, very wrong. I don't think anyone told me that a long recovery was going to happen, or I wasn't listening if they did, but I certainly wasn't prepared for it. Here I am three years later and my life is definitely not the same as it was. But actually I think the positives now far outweigh the negatives. The bleed was an unwelcome circuit breaker for our lives but about a year or so down the track my attitude changed. I found it much better to focus on what I do have rather than what I don't. And I am much clearer about what is important in life and what isn't. One valuable asset that I didn't have pre-bleed was time because my life was so jam packed. Soon after the bleed I had time because my doctor told me to stop work. I wasn't coping due to the head pain and fatigue but was just pressing on. Bad move. However I don't think I knew what to do with the time at first. And that is understandable in the sense that I was still thinking that I was dealing with a short term problem and therefore I would be back to 'normal' in a few days or weeks. And maybe that is how it is for some but I would be surprised if that is the case. So if I had the opportunity to plan my recovery and do it again from scratch what would I change? I would teach myself to get to know my boundaries and remove all those things that have a negative impact on my recovery. And I would reflect more on who and what are most important in my life and put more energy into them. And I would more quickly accept the hand that I was dealt. And I would learn to say no. Yet again I can confirm that the wise counsel of our experienced BTG'ers is, perhaps unsurprisingly, spot on. Key for me are the messages to be kind to your brain, listen to your body, and pace yourself. I was slow to learn what these messages actually mean but the sooner one works that out the better. My recovery is a work in progress and I expect that there is more to come. But if this is as good as it gets then I am fine with that too. I figure that I have little to gain from stressing about it. Best wishes to all on BTG, especially to Karen and her band of wonderful helpers.
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Two years today since my out of the blue life changing event. Once again I am motivated to post on BTG just in case something I write is helpful to someone else. Like many on BTG I had unrelenting head pain and profound fatigue for a long time after my bleed. Other symptoms seemed important at the time but not now. The head pain is mostly at a low level these days such that I am only motivated to grab some analgesics when I have over done it. My head still does not feel normal, as best as I can remember normal, but how it feels is not dominating my day like it used to. I have not felt the need to sleep during the day for months. My capacity to work and just do the things that we do is probably at about 60% of my pre-bleed capacity. As many BTG'ers have said would happen, I continue to improve with time, albeit at a seemingly glacial pace. So what have I learned in the last 2 years? I have learned that it is ok to take life at a slower pace and not feel that every spare moment needs to be filled with doing something productive. And it is ok to just take some quiet time by myself with no music, radio, TV, computer or other noise or distraction to give my brain a rest. Also I have learned that pacing myself is better than trying to push on, and I am better now at spotting when I need to back off. If I overdo it I pay, sometimes for days, sometimes for weeks. And I have discovered that the medical profession is very caring and supportive but knows little about what to expect in recovery from SAH. Recovery is a long journey and one that requires careful listening to ones body, and brain. It is a unique life lesson for me to learn. And I have learned that there is nothing like BTG for people who want to find answers to the many questions that emerge at different stages of recovery from SAH. Most importantly I have learned that there are some wonderful, generous people on BTG who have a unique understanding of what we go through and I feel fortunate to have been able to join this community. I am so grateful for the support that I have received from BTG and for Karen's ongoing commitment to this website and all her friendly helpers who just keep giving. Best wishes to all.
