Here's Hoping

[Dorsetcharlie]

Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.

Someone recently asked me if I was 'OK' because I seemed a 'bit up and down at the moment'. They were completely genuine in their question and I know it came from a place of caring.

Their choice of words made me smile inwardly in a sort of ironic way as the title of this blog is no accident; every stage of this journey has taken us up and down, like a twisted game of snakes and ladders.

In the early phases you career between the hope of a flickered eyelid and the terror of the 'when to withdraw treatment' conversations. As time moves on you are buffeted between the joy of small victories like the first few sips of thickened water and the pain of accepting what is lost. This develops into a focus on how much rather than if at all and still you undulate along the ups and downs, grateful to still be on the journey.

In a weird 'if I knew then what I know now' way the more acute, in-patient phase is not so bad; you have tangible, concrete things to focus on and a place to spend your hope. You can clearly chart the improvements and have no real responsibility for what happens in that environment. If it's not working, then 'they're' doing something wrong. The highs and lows are more immediate and visceral, but at least you can take comfort from knowing hope is likely to go up again soon.

No, the worst ups and downs are the ones that are so imperceptible as to hardly register. As progress slows and you begin to establish the new 'normal', everyday feels like an unremitting, featureless landscape and you find yourself compensating by experiencing every tiny thing, whether good or bad, to it's extreme, a bit like voluntary bi-polar. Trying to force the hope to do something, anything.

Add to this the constant feeling of failure you have from not being able to help, understand, mend it, or do the right thing in any situation and you start to feel as though you are truly running on empty. I have believed that I reached this point many times over the last 17 months only to be able to thankfully scrape some more reserves off the bottom of the barrel, I am sure I will do so again and be rewarded by an upward tilt soon.

So, if I seem a bit up and down it is because that is the nature of brain injury whatever the stage; hope goes up...hope goes down.

[Molly15]

Your words ring so true with me. My husband had a SAH in October last year. 4 months in hospital, home in February, then 2 weeks ago a nasty water infection resulted in 3 visits to A & E and being admitted twice. Then our biggest fear materialised at 7am on Good Friday, he woke as normal and after 10 mins or so, and luckily still being in bed, he suffered his 1st seizure. This was terrifying for me at the time, and for him afterwards, as he is so frightened now that it is going to happen again. After another day or so in hospital, he is home again. The neuro doctor thinks it was as a result of the last anti biotics for his infection and some new tablets started 2 days previously for his depression, which had both lowered his levels of Phenytoin, which he takes to prevent seizures. Now fully loaded with the drug and home, he is crying a lot again and so scared. The few days before this happened had been his best yet, much more positive, stronger on his legs, and happier. Every time, as you say, you seem to be getting somewhere, something else comes along to bring you down again. I am coping, but only just. It is such hard work, I love him so much, but it is so hard to see him so helpless, and so scared. We just pray that this was his 1st and last seizure, and life can get back to normal. He is waiting for his operation date to have the skull bone replaced after the craniotomy. This was cancelled as he was due to be admitted the day after his infection began, so no idea how long we have to wait now for that. And then more worrying times!

I pop in and out of the Headway site, not on a regular basis, but its always a sort of comfort to read words like yours, which at least make me realise its not only us, but so many others going through similar and worse things.

Best wishes to you, Jenny

[Hidden]

Every brain injury is different so I can't presume to give advice to anyone in their own personal situation but...... My husband got chickenpox, not as dramatic as some of the people on this site but still the same outcome unfortunately. We are seven years into our journey now and I can honestly say things are different if not better or worse. Every month and year bring its own complications and trust me, it does get better, albeit slightly, sometimes so slight you don't even notice the difference. I have found that keeping a diary of the ups and downs helps me enormously. Being able to look back at my own version of what was happening at any point in time makes me realise what huge steps forward he has made. It also helps him to see where he was compared to where he is now. I take solace in reading other people's journeys and I don't tend to post much because its difficult to deal with the man that was compared to the man I have now. I don't love him any the less, in fact I probably love him more now because it is like having a third child. We have two daughters who were 3 and 18 months when it happened and they will never know the wonderful, happy, spontaneous man that was their dad, the guy that would have probably done anything in his power to make them happy and make them the best that they could ever be. Instead they are laiden with a man that angers easily, shouts when the noise in the house gets above a whisper and cannot cope with a family mealtime because of the chatter. Thankfully their lack of memory of who he was before makes them all the more accepting of their 'different' dad and they love him more than words can say. Dorsetcharlie, keep on going on honey, reading your blog makes my day, even if I don't reply to them often. I hope one day to make it to Dorset to meet with you. I'm sure we'd have a lot to talk about xx. Molly15 keep on going too, it's a tough road but well worth the journey, makes us better people for having travelled the road xx

[alwayshavehope in reply to Hidden]

Hi just wanted to say how great it is to be able to read people blogs which are so close to my own life. How did u deal with the fact that ur children will never know the person he was before because even when I think about how much of an amazing dad my partner was to our children it breaks my heart to know they will never know the person he was who they adored. My children are 2 and 4 and I find it hard to even look at them somedays without having to leave the room to cry as I can't controll it! I know I just have to get over it and deal with this but its hard. I just hope one day I'm as strong as you seem to be when it comes to themxx

[ricozoe]

I know u r a very strong person.but even the ststrongest people need to get their sadness out before getting the hope back up.when reading your blog i found lots of my feelings which i have but i havnt been able to put into words.so im cryin againe but its relief.so thankyou againe. U helped againe like u always do i hope u get your hope back up soon .