7 months since brain heamorrage

I lose so many days since sah, lost forever it's like being in a dream then it's September having lost months doing nothing. I don't seem to have good days just bad days and worse days, once the worrying starts it's like being in a nightmare and a spiral if depression begins, it seems to pass and within a week am feeling ok. The fatigue is soul destroying, the forgetfulness is shocking. I tried resetting a computer the other day and it stressed me out so badly I thought I was going to die( in the end I stopped and spent the day in bed), so I can't do mental tasks without melting down. It's like a living hell but I look ok so I must be fine.

[cat3]

I truly empathise Jason. I recently bought a smart TV (always had basic ones previously) and spent hours trying to connect to wi-fi and link to dvd player. I was always quite adept with technology pre-BI, but nowadays I get SO upset and angry with anything remotely awkward, and the new TV brought me very close to a hysterical meltdown.

Of course nine times out of ten there's a logical explanation (found later on this occasion it was combination of lost wi-fi signal and faulty lead) but I've learned to grit my teeth, take a deep breath and walk away from escalating frustration as soon as red mist appears. Not always easy when it's something needed 'now' but better than causing a migraine or other stress related issue.

So, at 7 months post BI, you're still in the throes of adaptation to (and acceptance of) your injury and its after-effects. It's a long game finding the dodges which work best for us personally in coping with fatigue, forgetfulness and an emotional short fuse, but I found a noticeable improvement at around the 2 year point, probably a result of trial & error.

But I suspect there'll always be the heightened emotional responses to things we can't control or fathom, so learning to walk away 'til perspective kicks back in and the fatigue has eased is vital, as is the ability to laugh at ourselves once the crisis is over !

And, yes, we look perfectly normal...…..'til we turn into maniacs at the slightest hint of adversity, which isn't really who we are at heart and which certainly doesn't fairly reflect the issues of a brain injury.

Good luck in getting there Jason. But please give yourself more time, and try to be a bit forgiving of deficiencies which aren't of your own making.

Love Cat x

[Hidden in reply to cat3]

All good advice thanks

[Kirk5w7]

Hi Jason

Cat’s advice is perfect, not probably what you want to hear but it is still spot on.

Be kind to yourself, brain injury is a dreadful thing to come to terms with and we are none of us prepared.

In our own eyes we are less than the person we once were so we assume others will think that of us too. That is so hard to deal with because the image we have of ourselves has taken so many years to build and then in a heartbeat it has gone and we are expected to live with bew person we have become.

Not only that but we have physical and health issues to deal with. In my case the datigue was dreadful, but that does improve, i have memory issues, sensitivity to sound, loss of peripheral vision, a sensitive bladder, the list goes on and many will know what i mean and also have the same issues.

But, you will learn to put coping mechanisms in place and with time hopefully your symptoms will improve.

Be kind to yourself and roll with the issues, push back at them gently and they will give. You and your brain will learn how get the most out of your life. We are here for support and are happy to listen.

Janet

[Froggiefrog]

Not much I can add to what has been said in the other two replies, all of which sounds spot on to me. This said, I would like to remind you that the tendency to be our own harshest critic isn't easy to get away from, despite instinctively realising it isn't always to our benefit.

Fatigue and memory issues and completion of sequential tasks are probably my three main foes at the moment, so whilst we are individuals with differing experiences, I can empathise with how frustrating it can be to have such things compromising seemingly everything and anything.

Sub-consciously, you may have set yourself goals and if they have become too much of a focus, it may be hard to reflect on the successes and progresses you have made in individual areas. Striving to be the best we can be is generally not a bad objective, but issues such as fatigue and memory issues DO mean we need to re-define 'progress' and 'success' when thinking about them. This is something that we would probably do automatically in the case of a physical, visible and universally understood injury.

Focusing on what you CAN do, rather than what currently defeats may be a cliché...but that doesn't mean it's necessarily old fashioned, wrong, or not a good point of focus for those affected by brain injury...in my book, at least.

Take care

K

[swedishblue]

Hi Jason, I think we can all relate to what you are going through. Don't be hard on yourself. You'r doing really well, and I promise you, it gets easier with time. Who would have thought our brain injury could be so challenging to recover from, or even to last so long! The heatwave this past week has been very debilitating. I'm sure you weren't the only one feeling decrepit. Recovery is like a game of "snakes and ladders" while you're finding acceptance and stability of symptoms. Life will settle down, don't fight it, Just go with the flow. Rest n sleep as much as you need - you are in no hurry! Make sure you drink pints and pints of water daily. Wishing you better days ahead!

[Hidden in reply to swedishblue]

I drink tons of liquid per day, the heat destroys me, I have not read the book but read "the chimp paradox" to try and understand more( I don't recommend it as it is worded as if the reader is a moron).

[swedishblue in reply to Hidden]

It's not a book, its a Letter, and I really recommend you read it.

[swedishblue]

I wonder if you've read "A Letter from your Brain" written by a brain injury survivor? It helps remind us that we have to be more gentle in our recoveries! Best wishes x

headwaythamesvalley.org.uk/...

[Danger19]

Hello my lovely,

I just wanted to say hang in there my friend and give yourself a break. Coping with the effects of what has happend to us is as you say, soul destroying.

Let me bore you with my info. Part of my injuries from my accident was a SAH and what I experience is a nightmare so you are not alone my love. My after effects are different to yours. My brain injury was also seven months ago but the after effects are never ending. So my after effects include not being able to remember words I want when having a conversation. I never sleep, my insomnia is a living hell. But although I never sleep I do everything at a million miles an hour. Honestly, I should suffer with exhaustion due to lack of sleep but I'm seriously like somebody on speed. i can't stay in one place for long and my family are always telling me to slow down. I know anybody suffering from fatigue will hate me but I would just love to feel tired. I do take a lot of medications because as I told you before, I'm diagnosed as nuts. With the medication I take I should be unconscious most of the time, yet Imexperience the opposite to how they affected me before my accident. My GP has prescribed me every sleeping medication ever produced but now we have given up. I have been given quite a high dose of Pregablin to help with nerve pain but I know they also prescribed it in an attempt to slow me down and to help me sleep because my mother was with me when I saw the GP and she begged for some kind of medications that could help with these problems. Pregablin is also prescribed for Bipolar but it hasn't had any positive affect, I'm still a continuous ball of excessive energy. I'll give you a laugh, my family call me the female Peter Pan.My last problem is that my anger and aggression is out of control but I'm trying to learn to live wi h it.

I know my problems are very different to yours but I am certainly in a living hell with you my friend. I know how your feeling. I'm a control freak and I think that's why my anger is so bad because I have no control over the fact I can't keep still for longer than about 20 minutes and I spend all night trying to find something to occupy my brain. I am totally with you mate and you will be in my thoughts so please don't feel depressed and alone. With my mental health condition I understand and know the despair of depression, I really hope you have somebody that you trust and feel confident to talk to. Maybe speak to your Doctor, I take four different antidepressants amoungest other tablets and i,don't know how i would deal with what happend to me without my meds, I sincerely believe that I would no longer be here without them.

I wish you a ton of peace, happiness and never ending luck my friend. I really hope my reply helps by knowing you are not alone with your struggle.

Vikki

[Hidden in reply to Danger19]

Before my head went bang I did everything at 500 mph, if I would have taken speed that would have been a nightmare, people used to think I was on it anyway lol.

[WinB]

Hi Jason

They fix us up and send us home. I was sleep for under a year with Hydocephalus ..Shunt in and I knew the dogs etc ..You are in early days yet but do not look back a week look back 4/5 weeks back and see if you can do little things we took for granted when 100%. I also had SAH 4 I believe. So dont push yourself too much. I have had 2 sim cards and cannot remember Numbers arghhh I awoke and sang to a nurse Cannot remember this but my Family told me all I said and did while in cuckoo land. Then found a site Behind the grey and went on there and no one poo pooed me when I got things wrong. It was a great help like this site is. Do you like singing? as I swear keeping happy and singing is a good medicine ..But that is me xxx Keep well and when down keep happy if possible and do not listen to others troubles until you can handle them..We need peace and happiness my idea of a good day ..but when I sing not good for family lol. Feel tired have a sleep. Give yourself a smile a day, love you and look after self as it does get better but a long haul xxx

[Hidden in reply to WinB]

I'm ok, just have a wobble Evey now and then (so I have a rant on here). They have been talking of doing another op on me, had scans 5 weeks ago and awaiting results( they said i would have them after 2-3 weeks), chasing up results. Life is on hold till I know wether they want to operate again ( this caused my wobble), uncertainty and me do not get along. Thanks for reply

[DawnD123 in reply to Hidden]

I know what you mean. I am due to have my next scan on Thursday. I already know that I have a new aneurysm behind where they clipped my old one. The wait for the results is unbearable. Last year they decided to leave it alone and monitor it yearly.

I am otherwise very positive about my whole situation. After a SAH then a stroke years later and with this to keep me worrying, I just think my glass is half full and every day is a bonus. It helps that I have a lovely son and daughter in law and three gorgeous grandchildren too!

I wish you well for the future, be kind to yourself.

[Hidden in reply to DawnD123]

Yes, that's the attitude I go with, live for today and get on with it as best we can, but e every so often its overwhelming and I go into meltdown mode, should have changed my car months ago but then thought wtf am I doing I may not be able to drive in a few weeks ect ect but now I'm ok and get on with living again.

[DawnD123 in reply to Hidden]

I completely understand! I’m terrified that I am going to be told that I’m not allowed to drive. When I had my initial surgery I was refusing it because they told me I wouldn’t be allowed to drive. The last thing I can remember before the operation was being told “if you don’t have this operation you WONT be driving your car anyway!”

Virtual hugs to you 🤗

[Hidden in reply to DawnD123]

They stopped me driving for 5weeks 14months ago saying they thought I'd had 3 strokes, then 4 months later stopped me driving for 10weeks yet didn't send me for scans ( I have pykd) and aneurysms are a side effect of the disease. I collapsed in hospital and had a brain heamorrage which caused me the damage. I think it could have been prevented but that's life I suppose.

[DawnD123 in reply to Hidden]

I wasn’t allowed to drive for Six months after the haemorrhage and was then put on a ‘restricted’ license for three years. I was told that as long as I didn’t have an epileptic fit in those three I would get my full license back which I did.

[WinB]

Understandable Jason as I would have been so scared if awake as after I awoke thought it was the end of my life lol ...sung to take mind off xxx Drink lots of water it helps the brain. If I got over mine you will be okay but waiting is scary xx Good Luck xx

[FlowerPower62]

I think the best thing you have done is join this forum. People are so kind and helpful. I wish my husband would get on board with it, but he just wants to cope on his own. It's amazing how peoples' symptoms vary so much, I don't think I've read 2 the same. I just want to thank everyone for the time they take in answering people. Especially Froggiefrog, whose name is always popping up, you are a star.

[Hidden in reply to FlowerPower62]

I agree, I found this forum when desperate for an outlet and was in a bad place, it's helped far beyond words, a special place with special people.