In a group of mice, has been identified that their brain presents degenerative changes similar to aging after two months that their cerebrospinal fluid (CSF) stopped circulating normally within the body and starts to accumulate, as reported by a Mexican group of researchers at the University of Colima.
There is a large tribe if TBI/ABI/PCS (Tramautic/Aquired brain injury, post concussion syndrom) on Twitter. We tend to like online social connecting sites becuase when we are feeling like shit, stuck in bed in a dark room these sites may be our only source of connection to the outside world. I remember, I had relied on social site for four months once. I could barely get out of bed without feeling like I would pass out.
There was this post “How do you cope with TBI/PCS symptoms?” yesterday. Now this may seem to an easy answer for those that are clinical…look it up on the Net and list off…rest, eat healthy, follow your medicine, blah…blah…blah. However “How do you cope with TBI/PCS symptoms” answer is not so simple. It is really a big whoop ass can of worms.
First off people who are “normal” will just say here is a list just follow it and you will get better. These are innocent, well-meaning people who really have not walked this journey before but instead are taught what to say and do.
When you are knee deep on this new life adventure (so much nicer to write than sucky life-long condition) is to grieve. I mean grieve the loss of who you once wore. Believe me this is not easy at all. I am over three years in and I still grieve. I still get mad and frustrated at where I am that it often clouds how far I have come.
I mean who wouldn’t want their old life back where everything was easy peasy; thoughts swift & quick; anyltical skills and crital thinking intact; planning & organizing there; coordination; strength; energy to work, look after family, have hobbies & social life at a moments notice and above all live pain free…But I am not that person anymore and I accept that I am not that person most of the time.
So we have our pity party for a bit then I mentally kick myself in the ass & my drill sergeant tencacity kicks in. I mentally say suck it up sunshine; usually something about not quitting and other motivational stuff to get me out of a funk. I take responsibility for getting myself out as no one else can except me.
- I read motivational pictures & quotes
- I watch motivational videos. Unbroken or Why do We fall
- I read Motivation Facebook Group Bright Side or website Elephant Journal
- I focus on anxiety reducing activities such as breathing. (I do alot of this)
- I remember I how I have come. The challenges that I have overcome.
- I focus on the positive. It really becomes easy after a while. For example, the biggest positive is that I get to become a new me. I am learning what I like and don’t like. I get to experience things for the first time that were old hat for me. Trying foods to see if I like or dislike etc….
- I move forward.
- But above all I am grateful. I am grateful to re-write my life. I am grateful that I have learned alot about myself with the journey. I am grateful that I am here living. I am grateful that I have found who my true supports are. I am grateful for a new approach to living. I am grateful to explore each day with new perspective (literally & figuratively). I am grateful that my kids are hopefully learning about compassion and empathy (no zombie comments lately – LOL) I am greateful allowing myself to fall & get back up again. I am grateful that I am able to express myself via writing and art (verbally and body language not so much). I am grateful for the opportunity to start fresh each day.
So really to “cope” is not simple there are many emotional and mental steps. There is a lot of time needed. And I didn’t even include all the physical, organization, planning steps that you learn via OT (occupational therapy) that help you function. This is a vast black hole of a subject that just can’t be thrown around in a black & white fashion. It is more of a comfortable grey blanket.
I saw my very good friend today and she said that I look tired but very good. I had to agree with her. I am looking but feeling exhausted. I am so dragging, headpressure and pain. Not enough to get me completely out of the game of life but enough that I know it is there. This feeling is like an annoying hangover which would be okay if I had earned it from the night before. Nope just get the feeling. Lucky me.
Last Monday, I had my neuropsych assessment. This is the second one I have had. The first was when I was inpatient rehab when in Unit 58. It started at 9am and went until 12:15ish. I was exausted and felt sick to my stomach after. It was an interesting series of tests. I had to laugh at the peg test and the grip test. Oh yeah…lacking coordination and strength on the right side…it was quite amusing as I was doing it. I like the block test where I had to do patterns. The attention and memory tests were sucky but I plodded through everything.
I then went to cafeteria to get lunch. It was so busy that I only sat there a few minutes and decided to go check in to sit in waiting room where it is usually quiet since I had an appt. with my Physiatrist for 1:30pm.
I check in; walk down the hallway where the waiting room nook was empty…score!!! I settled in and tried to eat my sandwich but I still felt sick to my stomach so I stopped. I was sitting there with eyes closed, relaxing in the relative quiet of a busy hospital when a person comes down and he is loud. He is another outpatient like myself. However, noise is not an issue for him but being loud, obnoxious were some highlight characters he exibited. Then he said he was there for his anger…while stating that the police are corrupt and he got his injury from police when trying to arrest him. OMG…I think that I am going to lose it and police might come arrest me becuase he will not shut up; I am tired; feeling like shit and trying to really be polite. I do this for forty minutes. Finally I get up to go to the washroom and a young intern doctor motions to me as I come out that the escape route is to the left. I explained that I need to wait and the look of pity was did not go unnoticed. Then he gets called out…peace & quiet again. I shut my eyes and sleep again.
When it is my turn to go in, we talk about how I am doing. I tell her that there is no way I think I can be a sucessful counsellor, I don’t think I could really listen to people all day. We check go over meds and then do the Botox. Chris was in room with me by then and it is his first time waching the process. I guess when it goes in, the skin all inflates and there is a big bubble. The needles never seem to go quick enough. I even yelled out once or twice. I even ended up with bruises on my scalp & forhead this time. So the remainder of last week and still this week has been a little uncomftable.
The Psych called today to give me a rundown on my results. He said that I had improved in all categories but memory went down. He said that if I want to go back to school or re-train, that would be best at visual and hands on. That is good news at least. Options. I don’t think a Masters is in my future anymore, but I have a couple other ideas in the fire right now.
The memory going down is a concern! I have been experiencing other potential hydro issues but have been ignoring them for the last couple months but today I ended up sending email to Dr. to see if we can get a head scan. If there is another issue and I need to get an ETV again, I would rather do it sooner than later. Below is a list of common symptoms when your hydrocephalus is acting up or things are not flowing right:
Older children and adults may experience different symptoms because their skulls cannot expand to accommodate the buildup of CSF. Symptoms may include headache followed by vomiting, nausea, blurred or double vision, sun setting of the eyes, problems with balance, poor coordination, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition including memory loss. taken from.Hydrocephalus Fact Sheet
Yesterday I got a call from a Dr. He phone to touch base with me because he has a conflict in appts. and most likely will not be at my appt. on monday. However, his assistant will be there administering my tests. He then asked me what school I applied for. I told him I hadn’t applied to anything yet. I told him I didn’t know what I want or was capable or suitable for me to do.
He asked if I wanted to attend Medicine Hat College? I said that prior to and during my dementia phase I taught at the college for one semester. I said I had been accepted into a Master of Science program at Royal Roads. I told him that due to a lot of factors I can no longer perform in my old profession as I had once had. He said he reviewed my first neuropsych.
I told him I was looking at online Recreation therapy assistant program, art therapy program or masters of counselling or graphic design. But I am not too sure if I could pass any if I took the courses.
I told him that I could write more freely now. That my typing speed made it easy for my fingers to get the words out without thinking too hard. Not like it used to be when writing (excluding bad days…avoid puter then). That my pain meds made my hand work better. That my eyes could take computer longer.
I told him that I could read books…lots of books…understand the words. BUT and a big but was that I have a hard time understanding context and following story. Subcontext and underlying meaning…forget it. Just like I have a hard time understanding sarcasm and jokes these days, the higher part of thinking is what I am having trouble with. The critical thinking, analysis and all that jazz.
I told him that I wasn’t wanting to waste money if really there was no way I could improve. I need help in improving what was once so easy for me. I was use to be able to draw inferences and bring together ideas for an arugment easy. Now I read stuff and go WTF.
So after what seemed like 30 minutes of talking on the phone (it was probably less than 10) I hung up with a follow up telephone call appt. the 23.
Tomorrow night, hubby and I head to Calgary for my appt on Monday. The first starts at 9:00am. The second appt of the joyous botox shots at 1300 and if I need more tests, I finish the day with those. Boo Yah…getting to getting the call and hopefully more answers to re-work this unique brain of mine
I function at home in a quiet place with my control of lights and stimulation. I know that, thus I am a bit of a recluse. I am happy to usually be by myself. It is not like I never see or have contact with other humans. I have my sons that range from 25-7 and my hubby. I have phone calls that I will answer if they leave me messages. I also go to art therapy once a week and I pick my kids up from school. I see lots of people. Plus at least once a week my kids have a friend over.
But I can think better when there is not so much other stuff happening. So my world of functioning better is limited to a small realm of safety for me. This little zone would feel constrictive and choking to those that are extroverts. This would be your hell. My animals would drive you crazy. While I enjoy talking to them…often they are more responsive to me than my own family,
Yes I admit that I am an odd duck. It is an effort to have a conversation. I am really not too sure what to say. I feel more awkward than when I was a kid. What the hell do people talk about anyway?! Politics…world news…local news…shopping…it all is really a huge effort. I am better at listening (ha ha ha), My personality Orange-Green or Green-Orange by the basis of true colours…which in layman’s terms is that I am an advernturous analytical person who is distance. Oh yeah I can agree with that. I can help and listen to other people’s concerns, but really have no need to share mine at least verbally. In writing and blogging…well that is another story. My fingers can automatically type and the writing and expresssion can free flow. Verbally…well not so much.
Nope I don’t drive myself bonkers. I am a putterer and keep myself busy with with projects that may take ten times more than normal due to my interesting way of trying to figure out steps. In reality that means I jump in and start…stop..figure out how to fix or start over. This may happen a number of times. Damn you Pinterest!! The photos look so easy. I am sure they are but I have to figure out my own steps….Damn you Recipie pages…If only I could follow the ingredient list or the steps. That last cheese cake bar I tried to make, the dogs wouldn’t even eat.
Well I shouldn’t complain. It is Rememberance Day. I think of all those men and women who have served in horrendous conditions to help the world and Canada. Their struggles were far more difficult and life threatening than mine. I am grateful for them and the path that these men and women have laid out for us to follow in their footsteps. So let us not forget other people or country struggles. everyone has their own battles that they have fought. I thank all those that have fought for Canada. I thank all those that have been fighting their own battles that I use as inspiration for my continued efforts to get better. I thank all my friends & family & community for their support so me and my family have a safe place to grow up in. And by meaning grow up…I mean not only a for my kids, but for my daily life long learning to better myself as well.
Hydrocephalus in Ugandan children and other developing countries is seasonal, linked to farm animals and in part, caused by previous bacterial infection, according to an international team of researchers from Uganda and the United States, who believe that the best approach to this problem is prevention.
After a year of burned mucus membranes on my scalp from SJS or Stevens-Johnson Syndrome, my hair is currently staying in, growing and healthier than what it was.
It really feels nice to notice that my hair doesn’t look like straw or is in clumps clinging to the back of my sweater. My boys currently have longer hair than me and they keep saying “mom…grow your hair…it would look so nice!” Believe me I didn’t want to cut my hair short, I had to. My hair was clogging the drains when I washed my hair. I hated to shampoo my hair and my fingers would be covered in my hair. I thought I was going bald so I cut it. I am extremely fortunate, that it appears that I do not have any missing patches on my scalp (from badly damaged folicles). However, I do have crazy curly hair so if there are minor spots, my hair covers them up.
It is so funny because for most of last year. I went everywhere with a headband on. It was just easier to just to wear a toque in winter and a headband the rest of the year to cover up the falling out wieird growing back hot mess of a head I had.
I really didn’t thing anything of my so called fashion choice other than I looked like I was really old or maybe I just felt really old or most likely I felt a lot of both. this is what I looked like 95% of the year:
To September to October above my hair has really started to grow. Yay! My hair has always been my identifier. I am not a make up gal & my hair thank god is curly so I all I really had to do in the past was just put product in my hair and run my fingers through it. It was easy peasy. The hair falling out thing was really a little freaky because it does not always grow back. I really do not know if I would have been up for a wig especially since I wear my tinted glasses that age me to a retro 70’s person. I am pushing my limits on cloudy days with going with my regular glasses or contacts too.
My skin is still really sensitive to different clothing fibres, soaps, paints etc….It still get blisters. I had a reaction around my wedding ring and it took my skin almost two months to heal. My back goes from no irriated to having my whole back itch, burn and blister quickly. My shoulders and upper arms still flare as well too. There is not much I can do but wait it out and take antihistamines, and use my prescription pain/anti-itch salve. The salve is sticky and smelly so it is not much fun. Living in a very dry climate does not help nor does the changing of the seasons as well.
I am hopefully going to get to see a dermatologist soon…maybe in a year or so on the waiting list. who knows. But overall I think most of my symptoms have disappeared or have settled for a bit. I am hoping that the oversensitivity will ease soon too!