Exhausted and in tremendous pain, but feeling great!

I’ve had an extremely full day, today, and I’ll probably pay for it tomorrow… heck, I’m paying for it now. But who cares! I had a great day!

I started out the day reading through my notes from my first neuropsych recap meeting, when the doctor confirmed that yes, there are scientifically detectable issues going on with my brain and my thought process. Some of the things found surprised me a little bit — I had thought I was doing just fine, on some of them, but — as is often the case with me — the very areas where I think I’m doing great(!) are the ones that I’m lagging on.

Things like speed of processing. And memory… short-term recall. Things like how long I can last at certain tasks… things like attention issues… things like language comprehension and learning.

I admit I am more than a little relieved, even if some of the things are bothersome  — it’s not in my head! Well, it is in my head, but it’s not something I made up! As though a lifetime of hassling with all this cognitive-behavioral stuff isn’t proof enough… But for people around me who need a doctor’s opinion to convince them, this should be plenty convincing. I’m so relieved!!!

Anyway, I am compiling question  for the good doctor, which I’ll type up and take with me, so we can both follow along and make sure I don’t miss anything… and the doc will give me more info, and then I’ll come up with more questions… etc., etc. This could take a while, but I’ve been told it’s okay if I take my time. I guess I may need to… tho’ it might not seem to me like I’m being slow ;)

Then, after I pulled together my questions, I actually went for a walk!  Woo hoo. What a beautiful day — clear and crisp and very quiet. I was surprised at how much I saw today. I noticed details about houses in my neighborhood that I never noticed before. I think having the testing out of the way has taken a burden off my mind, which is allowing me to pay attention to more things around me. It feels a little strange to be seeing things that may have been there all along, but at least I’m seeing them now!

It’s been a month or so since I got out of the house on a Saturday to do anything other than errands. I had a great walk in the woods — and I was only startled by one hiker. My hearing has been really acute, lately, though, so the sound of my keys in my pocket and the swish-swish of my windbreaker was pretty distracting. I kept thinking I was hearing the tags of a dog running up to me – I hate when that happens, and I’m taken by surprise – but it was just my keys.

Then I came back home and had some lunch and read some neurology and anatomy texts I’ve had lying around, so I can at least not be completely taken off guard by what my doctor says on Tuesday. When they start throwing around all these terms, I tend to get anxious, if they’re completely unfamiliar. Now, at least I may have more of a chance of not getting spooked by terminology. Sometimes that’s half the battle.

Then I took a nap. Woo hoo! Just for an hour, and I woke up worried and anxious, but at least I did sleep a little.

Then I got up and did yard work… and split the firewood I’ve had my eye on for quite some time. The pile of wood has been sitting under a tarp for more than a year, and I’ve been promising myself I’d split it, one of these days. Well, today was the day. And I did really well — as in, I was careful and methodical and I didn’t injure myself in the process. I took breaks when I needed to, and I stopped completely, when I knew I was tired. Working with ax and maul, it’s important to be careful! I used to use a chainsaw, but I kind of screwed it up when I ran it without oiling the chain. One of those cognitive deficit things, I guess. I haven’t used a chain saw in a couple of years. I figure, it’s just not worth it, to run the risk of doing some real damage to myself — which is entirely possible, given a motor and a rotating chain and my sudden distractability streak.

After the wood was split and stacked, I ate a little snack and took a shower and then made supper. Now I’m suitably tuckered out, aching and burning and sore from head to toe — but in a good way. I’m going to bed early, to celebrate.

It’s the little things, y’know?

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11 thoughts on “Exhausted and in tremendous pain, but feeling great!

  1. Here’s a report on the importance of brain scans:

    On Thursday the Institute of Medicine released their report recommending that returning Iraq war veterans be evaluated for traumatic brain injury. Some 5,500 military personnel have suffered brain injuries ranging from mild to severe. These wounds account for an estimated 22 percent of all casualties in Afghanistan and Iraq. This rate is twice the amount of the Vietnam war. Experts attribute this increase in part due to the advancements in on-site medical care and body armor that has increased the survival rate of ground troops. In the past a lot of these injuries would have killed these troops but due to medical advancements they now survive. The challenge is finding a way to treat the brain injuries.
    Many of the brain injuries are a result of the high impact of roadside bombs. Veterans who have been involved in high impact blasts often complained of persistent, disabling symptoms like sleeplessness, dizziness, and confusion. At times these disorders can resemble other disorders like post-traumatic stress which can complicate psychological assessments.
    Post-military monitoring of these returning veterans is another important key issue. Researchers have observed a trend where people with brain injuries proceed for years in a stable condition and then suddenly suffer dramatic drops in mental and physical capacities. Many medical professionals have found brain injury can manifest in more severe ways when a service member switches to a less structured lifestyle.
    The National Guard announced that it has launched an effort to screen every one of its Iraq and Afghanistan war veterans. The only concern is that the people doing the screening are warning that it is a long process.
    It is my view that the screening needs to be done and that processes have to be created to take care of our veterans. There is no other choice and ignoring the problem will not make it go away or diminish the pain suffered by these veterans.

  2. Hey, just found your blog! Great to see another MTBI person blogging about it.

    It’s been six months for me and I’m just starting to see some real progress and feel like I’m getting back to my old self.

    God Bless

  3. pochp – Thanks for this. It’s really important. And it’s encouraging that the powers that be are starting to notice the impact that tbi has on folks — and the long-term consequences that can arise.

    I, myself, have been struggling for some time with getting adequate screening of my issues. I’ve generally be treated like a complainer and someone who is just looking for attention, when in actuality I’ve been very reticent about my issues and have avoided drawing attention to them, and dealing with them, at any cost.

    Now, after years of making light of significant difficulties and avoiding detection with all my might, I’m stepping out into the light of day to ask for help, only to be told by doctors that it must be in my head, or I’m making more of this, than is really necessary.

    Having this report from the Institute of Medicine substantiating that tbi can result — on down the line — in significant health issues, may just help me to make my case that I do in fact need adequate diagnostic assistance, and that this is NOT in fact a laughing matter, or an attempt on my part to get attention.

    Thanks again for posting this.
    BB

  4. kazzles — It’s great that you found this blog. Please do stop by and post info about your own situation, if you think it may help others of us who are dealing with this. We need all the help we can get!
    BB

  5. Sure – no problem. It’s interesting that you get treated like a complainer when I know I was a bit embarassed and in denial for quite some time which actually slowed down my recovery as I was doing too much. My own family think I am doing this to get attention so I haven’t had a lot of support.

    In New Zealand where I am there is a really good Accident Compensation system that is very rehab focused so I feel very blessed to be part of it, but hear that in the States there is little or no rehab focus at all so I’m sure it’s difficult.

    The good news for me is that I feel sooooooo much better in the last few weeks. I am even skipping the afternoon sleeps and not feeling too bad which is huge progress for me – though I actually like the sleeps and they do help. I still have a few issues with navigating and noise I’ve noticed and i’m not back at work yet so some hurdles to overcome. But I do feel there is light at the end of the tunnel.

    My blog is http://www.thisgirlsjourney.wordpress.com – I started it before my accident but I do blog a bit as somewhere down the track I figure it could be an encouragement to someone.

  6. What sort of rehab do you folks do over there? I checked out your blog briefly, but ran out of energy… lots there and great pictures! Do you have a specific regimen you’ve had to follow? This could be of a lot of use to those of us in the States who are pretty much on our own with regard to TBI rehab… or who have been turned loose by a system that doesn’t think it can do much more for us.

    Would love to hear what they have/had you doing!

  7. Hi,
    I totally understand about losing energy to read a lot!

    Well, I had an assessment about 6 weeks after my accident at a specialist concussion clinic by a neurologist and a neuro-psychologist. There was a bit of a wait for that but it’s standard if you have a good doctor to get referred. They missed on the day of my accident and only thought I had whiplash, but 3 weeks later I was feeling worse and the whiplash was almost better so I finally went back to a doctor.

    There were huge delays in getting me into the “system” but once I did get in the help has been fantastic.

    I have an Occupational Therapist come and meet with me every week and set goals for the week and break difficult tasks down etc. It’s been the best thing and really at times the only support I’ve had so I’ve really appreciated it.

    I get subsidised or free physio, accupunture and osteopathy.

    The most important thing for me is that I tried to work for 3 months after my accident and was only performing at about 10%. I think it’s just that my work were really nice and I had previously performed well that I didn’t lose my job sooner. When the Occupational Therapists met with me the first time they realised I hadn’t had any rest and that I needed some so suggested a month off, by doing this I effectively lost my job as I wasn’t ready to come back to a high responsibility role full time. I’m still not working as I haven’t been cleared to go back to work yet (the accident compensation people require a doctor to do this to protect themselves) but the huge blessing is that I get paid close to 80% of my old income so I’m surviving. I should be back at work in the new year.

    I think the time off to heal and the support are key and I can’t imagine what it would have been like otherwise. I’m not sure I would still be alive to be quite frank.
    When I do go back to work I’ll have an OT meet with me and support me at work as well, I”l probably start with fairly simple tasks and build up.

    Hope that helps! I do hear that in the States there is very little recognition of rehab being necessary, which I’m sure just makes things harder.

    I’ve just had a busy few days with my boyfriend and skipped a few afternoon sleeps and I was pretty ok! It was a huge relief as we hadn’t seen each other since my accident and I think he wasn’t sure how bad I’d be. So I truly believe there is light at the end of the tunnel!

  8. Kazzles —

    Well, it’s great to hear that someone, somewhere, is paying attention to tbi after-effects. Here in the States… not so much. The first neurologist I went to see — who is actually supposed to be a TBI specialist — totally blew me off and made light of my difficulties. Only later, when I talked to a neuropsychologist who is very rehab-oriented, did I find out that this neuro (who is a prominent member of the medical community and is head of neurology at an esteemed institution) — and a number of their colleagues — believes that mild tbi will resolve itself without outside intervention.

    Oh, please — it’s just wrong on so many different levels, it frightens me. And to think that this person is a key player in the neuro field… I just don’t know what to do with that information. Actually, I think I do know. I’m going to notify my local brain injury support group and have this person placed on their list of “unhelpful” neurologists.

    On the upside, it’s really surprising to me — at times — how helpful very basic, simple, systematic approaches can be for someone like me. Just having a proper daily planner and taking time to plan out my day makes all the difference in the world. And having someone to talk to about what my experiences are. And keeping track of my deficits, as they are happening (or at least following up with them after the fact). Just knowing that there is something different about how I process information, and being cognizant of the past experiences I’ve had that have not gone the way I wanted them to… that helps, too.

    What sort of things does your OT help you with? Is it daily planning? Is it just going about your daily business? That would be great to hear about.

    Keep commenting!

    BB

  9. Yeah pretty much daily and weekly planning. I find I really like to have the plan now (well my personality is really like that anway) and it means that I get out in the morning and do my busy stuff then as well and then try to be home by about 1pm at the latest to rest.

    My MTBI wasn’t going to resolve itself without some rest I don’t think so that neurologist is strange. I think maybe they are used to really serious stuff so issues like ours don’t worry them, my nuerologist wasn’t that great etiher, but the neuro-psyche was brilliant.

  10. I fell 120 feet in 1971 mountain climbing. I’m no stranger to long term pain and beat the odds by recovering and learning to walk, talk, and raise 5 kiddos. It took a while to identify epilepsy and treat the seizures (almost 9 years), but that’s been fairly stable. I’d been seizure free for about 6 years when I had one while walking the dog this summer. took the entire fall on my right temporal area. Sure wish I could have saved the look on my skin for Halloween!

    It has been two and a half months since the fall. I still have vertigo, persistent headache, small bits of gravel erupting from the skin, dents in my forehead, memory, speech and vision problems. Aside from the emergency room visit and meds right after the fall, I’ve had no follow up. I am on a very limited income and the nearly $9,000 emergency bill is one I cannot pay so I’m reticent to run up more bad debt. If i’m up doing things for more than an hour, it will be many hours of recovery.

    Is this normal progression or should I go back for more evaluation? I don’t know what to do at this point. I’m afraid to run up more debt or hear surgery might be required, but even more afraid to go and just waste time and money. I’m still afraid to drive as my vision kind of joggles around and flashes me. I don’t like to ask for rides.

    Thanks for giving me a place to complain! I don’t complain to others.

  11. Hi – it doesn’t sound like you’re complaining, just talking about your life.

    Sorry to hear about your fall – it’s not surprising you still have vertigo and headaches, etc. Have you got any insurance? If so, you may want to see a doctor. I’m not sure they can do anything for your symptoms, other than offer you some medication (which may or may not work). And even if they tell you that you need surgery, you can always say “no”.

    Needing hours of recovery after doing things for more than an hour sounds familiar. I think it is important to build back stamina and endurance, by extending yourself and then getting LOTS of rest to recover. Have you done any exercise that you can do safely? Sounds like walking the dog could be dangerous…? How about yoga? You can get DVDs/videos at your local library or watch on YouTube and get some exercise that way. It could also really help you with your balance. I’ve found that just strengthening my muscles a bit with regular morning exercise has done wonders for my vertigo. It’s not just about being dizzy, it’s also about me being able to physically support myself standing upright. Then, even when I am dizzy, I have a better chance of staying upright.

    It might also be a good idea to reach out to your local Brain Injury Association chapter — you can find the contact details online. They might be able to connect you with folks in your area who can offer you some support and/or answers. You might also be able to get rides. There’s no shame in asking, really – if you need a little help, you need a little help. That’s all.

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