I'm resting up today before I have meds test tomorrow for planned angiogram on 2nd of February. And then possible radio therapy.
I'm nervous, worried, anxious, upset and I know to some degree I'm being silly.
Because there shouldn't be any changes long term.
I have come such a long way since my hearmorrage 8 years ago.
But.....I think if I type this it will leave my head (here's hoping)
When I had my brain haemorrhage 8 years ago I lost life as I knew it.
My balance, some sight, fantastic career, some family and friends etc etc.....
But most of all I lost my independence outside of my home. By that I mean I cannot go out by myself, I totally rely on others to take me out. Usually this would be my husband or sister, or close friends who understand my condition. I accept my condition the majority of time, but today I'm reflecting on what might have been. Silly I know..........
I would just like once to go out on my own.....s.......igh
I look well, much like any other person really. But since the haemorrhage and the
brain damage I have lost certain functions and pathways that worked previously. I therefore scream, panic, cry, run and put my self in danger when I hear a noise I haven't expected, and that's why I can't go out alone. (I've run into the road, I've knocked people over, I've screamed and panicked and pushed others. The list goes on) I can't even walk upstairs in my home if someone is behind me. In the supermarket if I walk around the corner and someone is coming the other way I scream. (Not as loud these days, due to the medication) good job someone is with me to say whoops sorry.
I have had loads of help in the last few years (nothing the first 4 years) to help me come to terms and understand my condition. People...... On the whole I get it and fully understand it. (I posted earlier in the week and it was much more positive)
I'm just feeling sorry for myself....I apologise......I know you all get it
I'm just very very tired from Christmas and my batteries haven't recharged enough yet
for me to take things in my stide as I would do normally.
I will post back when alls back to "normal". In the mean time virtual friends onwards, upwards and forwards.
hi Hannah your not being silly, your a normal human being that is going through something for the first time, your bound to be worried, Anxious, nervous, and for what you have gone through, may i say your amazing person, just think that all your problem have damaged your control centre your brain, if and when that's not working correctly things come out like your not excepting it, even though to some like walking around a supermarket it would be normal for them but not for you. when you think what our brain is suppose to do and work if like any engine if there's a problem with your car engine you go get it fixed, with the brain its not that simple, once damaged has started what was normal to do every day seams like climbing a mountain without any rope. as for your treatment unless you have been through it before you are going to be nervous, i've had to go through two brain scan, one the found a tumour which is being treated for as for the second one i haven't a clue which consultant has sent me for this, but with having to lots of blood tests done, one for my diabetes yearly MOT checkup and the second i haven't got a clue who's ordered it or why. so like you i'm waiting for something that i don't know about, i hope this helps, your not on your own here, you have many friends now including me to help you though your illness. take care and remember i'll be thinking about you take care Alan
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Thanks for your reply bigalan,
This is my fifth angiogram and I do know what's coming it's just the outcome that's making me worry etc.....
Thanks again and take care
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hi Hannah well at least you have someone else now supporting you and to be thinking about how you will be when the treatment is done take care will keep in touch your friend Alan
This sounds like a very limiting condition - no wonder you get fed up.
I have a problem with things sneaking up on my peripheral vision - makes me jump often. I am the world's worst car passenger as traffic passing on the left of me always looks like it is on top of me/veering into the car. I often apply my foot to an imaginary brake or literally shield my left side vision to stop me feeling freaked out !
I can't seem to judge distances correctly and have slow reactions to sidestepping oncoming people so have learned to watch and pre empt any swerving tactics I may need early on.
I never learned to drive, luckily , or I would have definitely had to give up !
Could you consider a quiet country walk as a first outing ? Do you have a dog ? Sometimes it can be reassuring and boost confidence to have a faithful furry friend at your side : )
Wishing you all the best with your upcoming tests,
In answer to a quite country walk etc......i would live this....but
My consultant and the health services have tried everything for my condition. Unfortunately I just can't go out alone and that's because of my particular brain damage. I have been out on various occasions over the past 6 years with health workers following me at a distance. And every time I have tried I have ended up in danger. The upshot is because of my brain damage I just can't go out alone. I can go into my garden alone, but I wear a neck alarm which is connected to my house phone with a connection to a service, and if I don't answer someone comes out as soon as possible. (This is if I fall etc..) They know my condition so if I'm unable to say they know my history. My neighbours don't say hello in the garden anymore because I scream if haven't seen them. And it's a horror scream, so unless there's eye contact they don't speak. And to be honest eye contact doesn't always work. My reactions to noises etc... are managed reasonably well outside the home as long as someone is with me and we use strategies.
You are not being silly. Nor are you feeling sorry for yourself you are just doing what many of us would do while waiting for the unknown.
I hope you don't mind me asking but do you know where your existing damage is and would you mind sharing your strategies you use when you are out?
Have you had an ENT appointment? Ask for one and a referral to audiology.
The reason I'm asking is because it sounds suspiciously like my brain stem damage.
Anyway back to what I was trying to say.........
Remember you have friends here and no matter what happens we will do what we can to help .
With lots of love n hugs
Xoxoxoxo
Hi Randomphantoms,
I have an AVM in my cerebellum. The AVM burst and caused a massive bleed, resulting in a *GCS of 5, (*Glasgow Coma Scale) If you Google GCS you can get the correct medical explanation which I found very helpful) I learnt to walk, talk and eat and after about 4 years (long story) I eventually had Neuro tests which established the parts of my brain that have been affected/damaged.
The areas listed by the Neuro psychologist are
Problem solving
Noise
Moods
Panic
Anxiety
Concentration
Initiation
Fatigue
Attention and Multi tasking
Distractibility
Planning and organisation
Reasoning
Ability to generate ideas
Flexibility of thought
Speed of Information Processing
Ability to regulate emotions
Symptoms of Fight or flight syndrome
Symptoms of dysecutive syndrome
Hope this helps, I will list strategies when not so tired.
Thanks for that and WOW you've done a lot teaching yourself to walk talk and eat. I know how hard that was.
Many of the things you list are issues for me too. Thank goodness I don't have the fight or flight thing or I would be a danger to everyone I just freeze and go into what I call putting the budgie to bed mode.
Please please ask no demand a referral to ENT and/or audiology.
They can do so much to help.
Again wishing you well and hoping you get the best possible news after the scan.
So sorry to hear how you're feeling. There are no shoulds and shouldn'ts, you feel how you feel. It must be so hard to deal with losing independence and being unable to go out when you want to without help.
So pleased you've shared on here though, I think that really helps.
I don't have a BI but my son does. I've been feeling really low for some time. I feel like my brain needs decluttering. I've decided to go yo the Drs tomorrow but I don't really want to go on anti depressants but I need some help.
There is this wonderfully inadequate statement that people who haven't been through a life-changing experience like to bandy about - that 'time is a great healer', and so we expect that after being in our situation for years we will somehow have got used to it.
Trouble is, loss involves a process of grieving, and when we are grieving then reminders are painful. When what you have lost is a way of life, rather than a thing or a person, the fact that this way of life continues all around you means you are constantly reminded what it is that you don't have. So you never really get the chance to be free of it. The grieving process becomes a circular pattern in life, of varying intensity.
You can be accepting of your condition in all sorts of ways, be totally at peace with where you are at, but that will never prevent you from watching someone who is doing something you can't do without wistfully thinking 'I wish I could do that....', and off you go round the merry-go-round once more. Sometimes it is a quick ride, not too bumpy, other times it lasts for a lot longer than you would like. But it is totally natural and understandable, and so don't berate yourself for having those feelings from time to time. It is only when it becomes your predominant feeling that it is not right or healthy.
It sounds like most of the time you are at peace and sorted, in spite of the really tough deal you have, but that right now you are frightened of what might lie round the corner. That you describe yourself as being 'silly' in that fear suggests that you know that the odds are on your side, absolutely, but also you know all too well that there are unfortunately no guarantees in that.
Voicing your fears and feelings won't make them go away, but it will help you to process all the emotions, and so the fear may become more manageable as you acknowledge the odds. Hopefully as others share their experience you will feel less alone too. I always find it a great comfort to hear from others who are in my situation, or similar, although of course I wish that they weren't!
I hope and pray that your angio goes alright on 2nd; as it looks like I am going to be in for 'waiting and watching' myself I can appreciate how unsettling it is in the run-up. And angiograms are not exactly a picnic either...best of luck for the whole thing.
And I hope you soon feel you have returned to form too and your stride lengthens again! God bless x
Hi Hannah, I'm so sorry you're having such a tough time. You really aren't being silly at all. The feelings and behaviours you describe would be perfectly expected in circumstances such as you describe. I really do hope it all goes well at your appointments, and please be assured that you are not alone in having problems going out/anxiety about things you might do I've spent several months now (almost sounds funny) either bursting into tears like a toddler (but at a much greater volume), or laughing far too loudly as small things about twenty times a day. I've seen slow improvement to the point where my family are used to hearing me laugh for apparently no reason (usually at myself ). But still fear being in a social situation where I'll burst out crying if something upsetting is said. It doesn't matter that it's only happened once, it's the imagining of it happening again that causes the worry, so I totally understand where you're coming from. The previous replies are so insightful and helpful - you really aren't alone sending you a big hug (and I don't mind how much you scream either!) good luck with your appointments
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