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Support is hard to come by


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I feel like I'm in left field sometimes. I wish I knew someone else with my NASAH condition as it is rare. I know this sounds bad, but I sometimes wish I had had breast cancer or something more common so the support would be there for the taking. All the things that can be left unsaid to another who has been through the same thing. All the fears we have, all the physical issues, all the worries, all the preparations for everything we attempt to do. Perimesencephalic. What a crazy word! Why did they predict that I'd be fine? I'm not. It was a lie that they treated so cavalierly.

How have the rest of you managed with such a strange condition with very little understanding of it all?

This has taken way longer to recover than I or the professionals ever imagined. Loathing. Mourning. Accepting. Crying.

Thank goodness for BTG!

~Kris

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I often see a mirror when you write here Kris. For me there was no surgery, no identification of the cause or the source of the bleed. Once the neurosurgeon did the angiogram and saw no malformations, no aneurysms, no further bleeding, I feel they felt their job was done. Released like an undersized fish.

Initially I thought I was fine, I knew I was lucky to be alive. As time went on I became more aware of small concerns. I believe a healthy brain could muddle through small concerns, one at a time, put them behind themselves.

But my brain isnt perfect and the concerns seldom come one at a time.

I have a timer I use to monitor how long I have my coffee breaks and lunch break.

I keep a journal to help with my bad memory. Although I still seem to miss writing down some of the things that are important to other people. I think my biggest aid is my sense of humour and my wit. Both are warped. Pills help me with my blood pressure. Walking helps my diabetes and my stress.

There are emotional times. Times of tears, I have come to enjoy those. Last weekend I was listening to some young ladies singing at the beach. tears trickled down my cheeks, but the music was beautiful. I dont think anyone saw, and I dont care.

Last week the doctor gave me the medical reports of my SAH. I have been reading them, understanding small pieces. I google the terms and decipher the results. They dont make me understand my condition any better but I am able to visualize what happened. I have asked for a neurospsychological assessment. That isnt normally covered by medical, so I have been informed. But in order to progress I think we all need to know our strengths and weaknesses. If I am not aware of a flaw I cannot correct it.

There are always going to be good days and bad days.

Two months after my bleed I went back to work full time, thinking I was back to normal. What a word that is "normal"

I am normal, but I am not the old me. I am still learning about the new me. I have no choice really.

I embrace the good things, I will try and change the bad things and I will smile every time I see a friend on here who feels the same way I do, who experiences the same things I do and who offers me courage when I need it.

BTG is a hostel and a school. It is a community that brings us all closer together and hopefully gives us a better understanding of who we are.

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I have been incredibly lucky to find Headway in my early days, I was struggling & didn't really know I was. I felt I could get better on my own but that didn't work - I needed help.

headway although a general brain injury charity threw me a lifeline & i gained so much just from understanding that I felt this way for a reason. I learnt why I felt like I did & that I wasn't alone. Sharing & talking to other brain injury suffers should not be underestimated, feeling alone in our problems can be damaging to our recovery.

Kris is there no form of support group anywhere near you? I agree thank God for BTG, before I found Headway I was here & it was such a blessing to feel I wasn't alone & that I should be feeling that way because I was still healing.

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Hi everyone

I agree with what your saying, but I have returned to work now part time as I was before as I have a little one, and slowley I feel as though I am putting the sah to the bk of my mind! I am keeping myself busy so sometimes I don't have the time to think & I'm even thinking of going to Ibiza with my partner and son at the end of the month for a long awaited break- consultant said I could fly and I believe life is far far too short to dwell!! Easier said than done i know this but it really is!

There is never a day I feel 100%but I'm still alive and am able to spend precious time with the ones i love so dearly so I'm counting my blessings, also I find coming on here helps knowing I'm not alone, and I even chat to jus from here who only lives half hour away so I know I'm not on my own and how ever bad I feel someone is right there with me!

I still cry now and then, in fact I had a cry today and asked my son for a big cuddle which made it all better, and I think we are all allowed to do that but then I think of what is ahead of me, although I am scared, my motto now is life is too ****** short!!!We have to remember what's important, living here and now!! I have had a massive re think since I first came on here, and I can tell you I'm a better person for what's happened to me, better and calmer!

Love and hugs to you all-remember your not alone.

Xxxxx

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Kris, in my own experience I have found that ANY type of brain injury, however caused, has very similar effects and I can honestly say that after the patient is 'fixed' there is very little understanding of the long term consequences by medical professionals. I have personally found that the only true understanding comes from people or carers who have lived the experience.

As Bev says, I have put the actual SAH event behind me. What I deal with now is the permanent brain damage that, in my case, has been left behind. I believe that the more of your old life you are lucky (???) enough to regain the further forward you move on.

However, if you have issues with pain, fatigue, personality changes, cognitive defects, the list is endless, you can't put that behind you even if you can distance yourself from the event. For a lot of us now that the horror of SAH & surgeries is at last behind us, the understanding on BTG from others who are living with damage to their brains is the only understanding we have contact with.

I would imagine (and hope to never find out for myself) that even a breast cancer survivor who is in remission will think people see them as better & forget what they have had to go through?

Michelle x

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  • 1 month later...

Carl--totally the same thing happened to me. I thought I was fine because the doctor said I was fine.

I dont think she understands what that word means.

I am very blessed to have made two wonderful relatively local friends through this. One lady I met online when I saw she had posted in a FB group I belong to "Just ran my first marathon since my SAH almost a year ago." I immediately friended her and felt like a Grade A Dork, but finally said "Hey, same here...help a sister out." She is much like me, a runner, close in age, no risk factors, sudden onset (she was hiking in Mexico and was in the middle of a river when it happened...on her honeymoon--oiks)! She has been such a valuable resource for me. She fully understands my need to get out there and get going again. At first it was sort of depressing because she was still (and is still) dealing with horrible headaches and I really expected mine to just "go away" like the doctor keeps saying they will. But I learn from her on what to expect, how to handle things, and I love what her doctor tells her. He seems much more in tune with her and her needs. Yes, there are active people out there, but most active people don't run four marathons in a weekend over Thanksgiving just to say they can do it. Doctors don't really know how to handle that kind of active.

(When my doctor released me for running he said I could go back to half of what I'd been doing before the SAH. Two weekends before I ran two marathons back to back, for a total of 52.4 miles in two days. I don't think he meant to REALLY go back to half, but he was just telling me what he normally tells active patients.)

The other is the sister of a friend of mine. My friend, Michele, lost her sister Nanette to a SAH a few years back. They had planned to run the Portland Marathon together, but she died right before it happened. The next year I ran with Michelle in honor of Nanette. I learned her other sister, Bethany, had also had an SAH. She is also like me, but not quite as active. Hers was much worse than mine, but she never lets me get away with "I know yours was worse, and I feel like I shouldn't complain." She has been a true advocate. She lives about 5 hours away, but I do see Sarah at races quite often.

I've also found a few others who have had TBI with excellent information. In return, one great running friend of mine had a very serious TBI when she was thrown from a horse into a tree and fractured her skull. I was able to help her quite a bit because I was "ahead" of her in recovery and was able to explain things like "Why when I drive 4 miles to the store and get 1 bag of groceries, do I feel so completely wiped out and need to sleep the rest of the day." When someone pointed out to me on here (or maybe to someone else) the kind of focus it takes to drive a car and be in a place with multiple sensory activities going on, it helped me so much to understand that not driving was the safest thing. In addition, another friend had a stroke and I was able to help her daughter through it. One of my runners, also had a stroke (embolic). It was minor and she's doing great, but again it was great to be able to say to her "Slow down, relax, let your brain heal."

I hope you can find someone because you need that "Okay, am I crazy" sounding board. Then in return as you are further along in your recovery you can help someone new. You already do help a LOT of people. You certainly helped me when I showed up after my brain-explosion!

I've spent a lot of time on why. I feel like there must be a reason or a purpose behind this, and maybe it is just that I can be there for someone else to help them through it. Or maybe the reason hasn't been revealed to me yet. I guess I need it not to just be some random event that had no purpose.

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Kris

I really empathise with what you are saying about lack of support. I have had this thought myself, that is for other conditions, there is loads of support out there, which is fantastic. But for us, it is like we are an orphan condition!

It is difficult too having had an unexplained bleed; perimesencephalic. As doctor I rather like the word. But why did it happen? I take solace in the fact that my neuro consultant with many years of experience has said that he has only known one person in his entire career to have a recurrence of this, so it is highly unlikely that we will be unlucky twice.

This consultant also took the trouble to warn me that I would go through a grieving process much like for other losses in life, with denial, anger, depression etc. He is right and I am glad of the warning. I don't think that people always understand that things we used to do are now more scary and need lots of mental preparation. I am currently working on going on a 45 minute bus ride to a city so I can go out and look round the shops because I am getting very bored 8 weeks after my NASAH. But to me, it is a big deal, will I get dizzy, will I get sick, what will I do if this, if that? and this from someone who used to live in London!

Anyway, not sure if this much help, but wanted to say I can get where you are coming from

best wishes

Vanessa

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Dear Kris and Vanessa, how l agree with you, as an active mum and gran my family have always had me on demand, whether looking after the children or looking after ponies, l live on a small holding in the brecon beacons, so have always been busy. l find it very frustrating as the DVLA took driving lice se away so l feel cut off at times. They do not understand this incredable tiredness, at times if l am confronted with too many demands l just panic a d say l cant cope, l have never been like this, comming to terms with the new you is hard, one cannot bore ones friends continuosly by saying no, so l end up. staying away, does any. one else feel like this??

best wishes jillbb

Edited by Skippy
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Hi, over one year out and I am still wondering exactly what happened. Tomorrow I see my neurologist and I hope to ask that question. I feel people think I am over my "illness" now.

We are supposed to attend out annual Veterinarians meeting in Orlando in January and everyone wants to know if I am going??? I cannot make that decision. I am back to work and already working way too hard. I cannot make a decision about January. I cannot read well now, will I be able to in January? Will I be able to catch a bus to and from meeting all day in giant hotels and go to activities in the evening as well? Not yet but in January? I also work with only one or two of us that can make decisions and are able to get themselves to airport ect. I am angry at the fact that they look at me to lead this mission as well as the Xmas party and the stupid Holiday Pet Parade in the middle of December! I have always been the “fun” one and I want to pass my party hat to someone else.

I may look fine, maybe if I limp or had a droop I would get more sympathy but I am over whelmed to the max with work and trying to get back to having a home life again. I love my Ritalin but it keeps me from getting the rest I need, although being able to go to the grocery store and buy some food is sure worth it, still I am finding because I look ok, I must be ok?

I am ashamed that my handicap license plate is used all the time now as before I was embarrassed by it. Now if I do not park in handicap place I will never find my car. I have to do that same thing all the time. Park same in the area, hook my keys on my purse, put my cell in the pocket of my purse etc. Life is better and Ritalin has helped but I am no way near as well as I look.

We have a vacation at the end of the month. The thought of traveling seems like a daunting – I asked my in laws or my husband did not to make plans as we do not know if the trip alone will wear me out.

Sorry for the rant, Maryb

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Mary, I decided a while ago that since I cannot predict how far along I will be in my future recovery, I don't volunteer, accept to do anything in several months that I can't already do today. It has decreased my anxiety greatly.

I do write all my happenings down and all the experiments I've done on myself to see if things help or not. Placebo effect has defiantly been a factor in many cases, but who knows...maybe I'll discover something about this SAH thing from an insider's standpoint. Just because I can't work as a physiologist anymore doesn't mean my mind has given this tendency up. I love experimentation and questions. One thing is for sure, the medical community is only interested in acute care for almost everything. It's hard to get anyone interested in studying long term effects of anything.

Now. Fix them up/churn them out. On to the next case...it better include an interesting procedure. Will a neurologist tell you anything that will change your life?

~Kris

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