Light At The End Of The Tunnel

There's been plenty of progress over the lest 3 months since I found Headway and I think I'm at the stage where I can get on with a normal, but different life.

I've been on a Headway course called 'Living with a brain injury' which was an 11 week group-attended set of weekly meetings where I met others in a similar situation to me. It's great to find out you're not the only person who was discharged from hospital without any warning of a BI and left the find out the hard way that life is now different.

The course covered a different subject each week, all being subjects that can help us cope with life now that it has changed, such as brain anatomy, acceptance, physical effects, cognitive effects and strategies.

At the same time I got myself in the system by being referred to a clinical neuro-Psycologist and an MRI scan on the head. The MRI result was that there wasn't anything in there (LOL) well nothing that shouldn't be in there and the neurotic-psyc tests pointed to certain areas where I'm now below average in areas such as memory encoding of verbal input, overall speed of processing and abstract thinking.

I feel like I've turned a corner and know my areas of difficulty are identified I can use techniques and strategies to compensate meaning I can just get on with life.

I can't thank Headway enough for helping me quantify the extend of the injury and giving me the knowledge to understand it all.

I've started to write the story of the last 2 years of my life and I'm thinking of putting it chapter by chapter in a blog, hoping that the mistakes I made, the total lack of information at the time and the changes to my personality will help others who find theirselves in a similar position.

9 Replies

  • Apologies for jumping in, but *that*, the lack of information, and communication is what I'm really raging about. My post-aneurysm-rupture impairments are fairly negligible, but I've managed to trap myself in a ridiculous hamster-wheel of 'is-this-normal?'

    Headway have offered me the option of speaking to someone there, but I don't know if I'm at that point yet, I've consulted Doctor Google extensively, and written up my own care plans and risk assessments. I've also filed a complaint with the hospital, which feels like a snarky thing to do, given that the hospital is the reason I'm still in a position to be able to file a complaint.

    I accept that I'm not going to be 'the same' as I was before the surgery, but I'm battling to be at least similar. I accept that I'm different now, and I'm working around each new obstacle, like a lab rat.

    All the best to you in your on-going journey, and I'm pleased that you found Headway, and that the course provided you with knowledge.

  • glad you have found youre way and that headway are supprting you i donot know what hubby and i would have done without them,Gaia rising,keep asking for support,and try to stay posative,you arenot! a lab rat xx

  • I'm a bit like a rat, they're incredibly resilient and resourceful. I don't eat out of bins, though! x

  • I was discharged from hospital after the accident with only care for the physical effects and I've received excellent treatment for fixing my head, face and nose.

    However, not one single person even mentioned a possibility of a brain injury. This is the shocking thing, that patients with serious head injuries are not even given the basic information about the effects of a BI. I know that my local Headway are trying to improve this with the local hospitals.

    For me, not knowing what was happening inside my head made the 18 months following the accident much harder than it could have been. I got divorced, lost 2 contracts (jobs), withdrew from the world and I'm certain that if I had the knowledge that I have now, I wouldn't have made the mistakes.

    Ask your local Headway office if they are running the course called "Living with a brain injury".

  • I agree wholeheartedly about the emotional impact of the brain injury not being addressed, also the sketchy provision in terms of coping with the adjustments that have to be made, I was referred to rehab, without being consulted, or advised, and, after two visits, she discharged me, because there wan't a thing she could do that I wasn't doing myself already.

    I think that part of the problem might be the delayed impacts, nobody really knows what the extent of the impairments will be, everyone's different, and everyone heals differently. I'm mildly rage-resentful of the whole waiting game. I know that, while my tissues are as healed as they're going to be, approaching five months post-surgery, but that the kinks in the system are still showing themselves, a little at a time. I'm mindful, I'm watchful, in some ways, that makes me my own worst enemy, BUT I'm also resilient, and adaptable.

    I was back at work eight weeks post surgery, because I'm a tenacious cowbag, and refused to stay at home, worrying myself, I needed to be occupied. When I have the formal response from the hospital, I will contact Headway again, and share it. Having a brain injury, whether it comes from the inside, or the outside, is a VERY significant, life-changing event. I'm fortunate in that I'm still able to articulate, and I want to use that skill to be able to help others, who wake up confused, disoriented, and hurting. The physical care offered at the hospital was faultless, but the communication, and the emotional care was dire.

    Onwards and upwards.

  • I agree, the cognitive and emotional side of care is so poor, it is disturbing. It's often these things that affect us most. Fifteen years ago exactly, I was discharged from hospital following a head injury with no help whatsoever. Not much has changed today it seems, with privately funded community rehab centres left to help in whatever way they can offer. But to be fair, there's a lot about the aftermath of brain injury that is unknown, even headway uses this forum to gather information, the NHS relies on outdated models of best clinical practice which lag years behind cultural understanding.

  • It's poor overall. I know that's an awful thing to say, given that I'm alive, and broadly functional, but the fact that I appear physically whole makes some people forget that I'm just a few months post brain-surgery. I'm not going to complain about my physical deficits, which are minimal, and will either improve over time, or be surmountable, it's the 'other' stuff I could have done with support with. I'm still over-analysing every ache, pain and twinge, which I know is adding to some of the physical stuff, there are two other aneurysms in my brain, MRA scheduled for the end of July, to see what state they're in.

    I'm a nightmare in that I won't be told what to do, and I appreciate that a "These are things that might happen..." chat might have been as much use as reading the possible side effects on a medication leaflet. My husband and son haven't been offered any guidance or support, and I know that my moods are having an impact on them. I'm 'leaving the room' a lot, so they don't have to cope with me.

    The hospital have stated that they will respond to my concerns by the end of next week, I'll see what they say, and then liaise with Headway, I don't want other families to have to drag themselves through what we've been through, it's in my nature to want to help. Laughing at myself now, for being a VERY 'wounded healer', my outcomes could have been far worse, but they could also have been handled better.

  • That's fantastic well done to you

  • Thanks to ashj and the other replies for putting these thoughts out here...and so honestly. Now we've all been able to identify the gaps in must go some way to addressing them.

    It's definitely helped me to know there are others experiencing similar.

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