Will it ever get better?

[Jellybean2]

I had a ruptured basilar artery aneurysm last July. It was coiled. I find little enthusiasm for much of what I used to love doing before this event. I used to work out twice a day 7 days a week before and loved it. Now I force myself to do 3 workouts a week. I used to love to cook, now it's exhausting and a chore I'd rather not do. I still have problems with my vision, headaches, and irritability. My neurosurgeon won't even explain if this is normal and/or if it will ever improve. I get exhausted so easily now and definitely find myself physically ill if I don't rest. All I do is work now and go to doctor appointment after doctor appointment. Every 6 months I have to have yet another cerebral angio. When does this all go away?

[Gaia_rising]

Hello, Jellybean2 , and welcome to the forum, we're all at different stages in this 'version 2', and all have our different experiences and histories.

Yes, it will get better, but, the most important thing to understand is that it's different. A brain injury doesn't 'repair' in the same way as a broken bone. With a broken bone, it's casted, or re-set, or pinned-and-plated, splinted, whatever, and then, eventually, 'normal' functioning resumes. Normal is relative, and every single fracture or break that I've ever had occasionally pipes up, and reminds me that it's not the same as it was from time to time. (Cold, damp weather, for example.) We get by that, because we're still relatively functional, the cast, or brace, or strapping comes off, we notice how pale and hairy the broken-but-mended bit is, and we limp, or carry things differently for a while, and then we absorb the injury into our normal.

The brain is the most complex of our functional parts, if I was being cynical, which I often am, I'd argue that even some of the brain surgeons don't fully understand entirely how it works, hence the 'wait and see' answers... I'm not giving you a 'wait and see.'

A brain injury is emotionally, as well as physically devastating, so very much of our identity being tied to the way we think, the way we process stimulus, a brain injury re-defines us.

I fully empathise with the loss-elements of your post, and I'm not going to be so blase as to say "Well, you survived, some people don't!", because, in my personal experience, that makes me want to scream "This 'survival' is not what I want, this is not ME!" Some of the things you lived for before no longer appeal, and that's as life-changing as the brain injury, I can sympathise with your frustration at this half-life. This bit is going to sound all kinds of new-age, bear with me. That you are asking the question about whether it will improve shows that you want it to, and your experience of medics being less than helpful shows the inkling that you know 'they' are not going to change it. There's no silver bullet, or magic words that will transform you back into 'before' you, you have a new version of you, and you need to look for the joy in that. The physical stuff, we get used to that, I've normalised symptoms that non-injured friends have said they'd call an ambulance for. The emotional stuff, that's hard, the questioning, and the second-guessing, and the WEIRD thoughts and impulses- mostly I can laugh at myself when I'm 'on one', but sometimes, yes, I want to put a blanket over my head, and for everything to go away.

It does get better, it's not all peachy, and some days, I'd put my entire life in the bin, if I thought it would fit. Hang in there, talk to 'us', not all of us waffle on as much as I do.

[lily82 in reply to Gaia_rising]

While my situation is very different from most people on here, in that my BI happened as a child and wasn't diagnosed until recently. And I didn't have a 'life or death' situation.

But I think it's so so wrong to tell someone with a TBI 'You survived, you're lucky' etc.

I think it's up to everyone with a TBI to define their own experience, and it's not anybody else's place to tell them how to feel. They are not the ones dealing with the effects.

I can imagine how hurtful it must be to hear and why it makes you 'want to scream'. While it may be said to be helpful, it can be invalidating and puts pressure on the person with the TBI to feel and act a certain way, you know?

If someone says that to you again, just remind them that it's not their experience, and only you can decide how you feel and think about what you went through.

Obviously, if someone does 'feel lucky' then that's their choice to feel that way. But not everyone has to feel this way, and that's perfectly fine.

[Gaia_rising in reply to lily82]

Thanks, lily82 that's the point that I'm trying to get across, that outsiders to this 'new' world don't mean to be insensitive, but there's no way we can articulate ALL of the issues we have. Mostly I just nod, and walk away, because, for the vast majority of the "You were so lucky!" contingent, trying to explain just brings on a whole range of "I don't know how you cope!", which is just as unhelpful. We cope because we have to, we adapt, and adjust, because there's no alternative. The 'reasonable adjustments' phrase still irritates me, because most of the time, it's 'us' adjusting.

[lily82 in reply to lily82]

Also, if someone with the TBI is feeling depressed and suicidal (which I know is common), they may feel they can't speak out about it because they are supposed to 'feel lucky' or 'grateful they survived'.

It doesn't leave room for the person with the TBI to feel their feelings or talk about the really dark and desperate emotions they go through.

I think it's best if other people just listen and not try to comment, because as I said, it's not their place to tell you how to feel.

[Jellybean2 in reply to Gaia_rising]

Hi, Gaia_rising. Thanks so much for all the words of encouragement. I am truly blessed to have found this site and realize I'm not as crazy as everyone is saying. Even my own family and friends tells me to "get over it now". They all think I should be "normal" again since it's been over a year, but I am far from healed. Believe me, if I could quicken time and get to a better place faster, I would. But my body doesn't want to yet. Thank you for the kinds words and support. I suppose only us with brain injury will ever truly know how hard it is and what a long road it is to recovery.

[lily82 in reply to Jellybean2]

Again, this is something I haven't been through because my TBI was undiagnosed and a long time ago.

But with all due respect, your friends and family are not doctors, so it's not really their place to assume you should be 'over it' by now?! Only a doctor can predict your prognosis. I think you should remind them of that.

Glad you find this place helpful. Are you able to have any therapy? Have you spoken to your GP? Mindfullness is quite a good tool to get through difficult times.

[Jellybean2 in reply to lily82]

My GP has been my saving grace through this. He has helped me when no one else could. I believe he's done more for me than the surgeon who worked on my brain as crazy as that sounds.

[Gaia_rising in reply to Jellybean2]

Ah, "Are you better now?" and "That was ages ago, though!". A brain isn't a worn spark-plug, you can't just exchange it, it's not a corroded connection on an electrical appliance, where a good thump in just the right spot will get another couple of months of seemingly-normal service out of it. Brains are massively complex bits of kit, not a single one of us is going to open that 24th advent door and be 'cured', or wake up next Monday, and be the same as we were before our injuries.

In my very early stages, I wanted 'before', I aimed for 'before' as an ideal. I'm still 'early', compared to some, my haemorrhage was February 2015, and I've had further surgery since then. It wasn't easy to accept that before, or parts of before, were gone forever, and that a lot of 'now' has to be different, but, in many ways, that's easier than the false hope that 'I' would get better. Life gets better, we get better at adapting to it.

[Jellybean2 in reply to Gaia_rising]

Your aneurysm rupture was shortly before mine. I had mine rupture at work July 9, 2015. Also, diagnosed this past year with 2 more brain aneurysms that are just a watch and wait scenario. I am sure we all would be back to our old selves if we could, but I tend to think we've all changed and for the better. People may not see it just yet, but they will. I am not sure how long my recovery will take but I'm ready even if it takes the rest of my life. Some days are better than others though, I must admit that.

[Gaia_rising in reply to Jellybean2]

Mine blew at work, too, and they found the other two while they were fixing it, the second-largest remaining one was coiled in March of this tear, the third one is too small for surgery, so it's on watch and wait.

We adapt, we live through some of the crappier days, trying not to kick the cat. (Don't panic, I don't have a cat, and if I did, I wouldn't actually kick it, I'd probably fall over.) 'Normal' people don't have good days all the time, show me someone who is positive all the time, and I will look for the flap on their back, where the batteries go. For me, personally, when I notice I'm on a down-dip, I try to 'do' something to distract myself, because my past behaviour might have been to wallow in the poor-me mindset, and I genuinely can't afford to do that now. Sometimes it's a little thing, like a walk outside, sometimes it's a bigger thing. (I NEED to stop emptying crap out of cupboards, and moving furniture, but it's 'something' to do, and there's a visible, tangible outcome, to prove to myself I didn't just sit feeling sorry for myself.)

You've found 'us' on this forum, now, and, while none of us are brain surgeons (apologies to any undeclared brain surgeons lurking.), we all have our various experiences of living with the impacts of brain issues. (Not everyone waffles on as much as me, thankfully.) Browse through the posts, I'm not saying there'll be epiphanies, or 'Eureka!' moments, but I tend to find a fair few "Ah, me too!" relief-moments, for the odd days where I'm not coping, or think I might be going mad.

[cat3]

Sorry you're so down Jellybean. Doctors generally (especially neuro ones) won't commit to a prognosis owing to the wide variation in outcome and after-effects of any BI.

It really is a matter of 'wait & see' then adapt to the changes and challenges our brain injury leaves us with. What you're describing are classic after-effects ; I know most people here would agree.

Have you contacted Headway for printed information ? It might reassure you seeing all your symptoms in print, and help you look for ways to manage them.

The helpline number is 0808 800 2244 (free call, office hours) if you'd like some booklets.

Our inadequacies often hang over us more heavily as winter looms I've found ! Best wishes m'dear, Cat xx

[Jellybean2 in reply to cat3]

Thanks so much, Cat. I think any information that I can get in order to fully understand my injury would help quell my fears. Thanks again

[cat3 in reply to Jellybean2]

You're very welcome Jbean ! I hope you've ordered your free leaflets from Headway so that, besides referring to them for your own peace of mind, you can show them to 'Doubters' who obviously need educating on brain injury.

I'm coming up to 5 years post-BI and still struggle with fatigue & other symptoms. I hope that, with more time, you'll learn the best coping mechanisms for you, but you can laugh in the face of anyone that suggests you should be recovered from what is a very serious health issue.

Look after yourself and remember, only you should decide how far you should push yourself and whether or not it's time to rest ! xx

[Jellybean2 in reply to cat3]

Thanks for those kind words. I needed that and believe me, I need rest so much more than I used to. I was always go, go, go and now I'm just when can I get home and sleep. I try to listen to my body but it was my mistake for going back to work 4 months post hemorrhage. I work in the medical field and working with patients all day long is exhausting. Not only am I trying to heal myself I'm trying to help heal others. It's exhausting but always well worth it in the end. Cheers!

[Mazvol]

Hi, Your description of how you are sounds just like me , my symptoms only started after a craniotomy to remove a cyst in January but I can totally relate to the before and after you.

Pre- operation I had great endurance ,a demanding physical & mentally challenging job and loved long MTB rides on my days off.

Once the physical affect of the surgery healed I expected to continue making rapid progress and quickly get back to how I was before and prior returning to work it felt like I was making progress. In so much as my regular walks got longer and I felt well provided I got plenty of rest and sleep.

Now after nearly 5 months of trying my best on a phased return to work I still cannot manage more than 8 hours shifts ( should be 12 ) and have burnt out 4 times in this period requiring 2 - 4 weeks total rest breaks before trying to work again. Headaches, vision problems and fatigue that leaves me unable to do anything but sit around I am used to.

As for sports I feel happy if I manage one walk on my days off without feeling exhausted afterwards. Black Friday I ordered an e-bike in the hope it will help me go further so I won't feel so trapped at home.

don't feel alone there's lots of people wishing and wondering when if ever they will get their old lives back. My cyst came back really quick so I don't even feel it was worth having the operation and I may need another, so have taken the approach of trying to enjoy each day as it comes.

Not thinking about the future is easier said than done when being affected like this has financial consequences.

If I didn't have to work to support a family I am not sure that I would be more healed or recovered , just more rested. Like you said' work brings a lot of satisfaction and I find being with work mates is a real tonic after I've been cooped up on my own while the rest of the family are out doing their things as normal on my days off.

I have just managed to get myself started along the path of getting a neurologist to see me rather than my surgeon who has no post op care experience. I believe seeing neurologist for treatment, advice and how to manage recovery and fatigue will help me more but it is something I have had to pursue through my doctor and hospital and complain about to get

It seems to me the usual in the NHS is to get people out of the hospital asap and see how they go with minimal advice given on getting help later if needed.

Best of luck, with getting better and if you find anything that helps let us know,

Kev

[emmersonuu]

My bleed was just over 2 years ago. By chance, someone mentioned Community Neuro Rehab Team to me a couple of months ago. Following an assessment I was referred to a memory clinic and fatigue clinic. Both have been great in suggesting small changes that can make a difference. I hope there's one in your area as I'm sure they could help. Good luck!

[Elenor3]

Hi Jellybean & welcome. I understand all that you're saying......after a reasonably well supported leave of hospital, I'm now finding that the 'great to see you're all better now' brigade have recruited most everyone around me. Quite what I'd have done without this forum I fear to think. You've come to the right place

[neuroman84]

Hi,

Just joined the community. Yours was the first post I saw. If you read my first post you may see that things do get better. Best wishes for the future and keep positive.

Neuroman84

[jacs17]

hope so

[jacs17]

thought that was just me tbh,i seem to set my goals to impossible tasks of no one can do like bed perfect {as I suppose since I was attacked in bed asleep )i want it to be perfect then the amount of things I have broken,blimey

[1oldwoman]

Jellybean you have described how I feel, amemory and fatigue clinic would be wonderful, but I live in an area that isnt well supplied with health care. I had a coiled aneurysm in 2015, I also have an acoustic neuroma.i haven't had an apointment with my neurosurgeon since september 2015, and will probably have a scan later this year. I feel abandoned because I haven't made a fuss, and the hospital is 80 miles away