Quote:
Originally Posted by Mark in Idaho
Sara,
I believe one of the worst things someone with PCS can do is try to compare themselves with others or try to collect time lines of others recovery. As the saying goes, If you have seen one brain injury, you have seen ONE brain injury. Every brain injury is different.
The only things that are the same are the needs for proper nutrition, quiet rest, and avoiding stress and over-stimulation. Recovery may take 6 weeks, 6 months or 3 years with what appears to be the exact same brain injury.
Anxiety and stress are the worst things for brain recovery. You have not yet replied with your daily activity regimen. You may be doing too much.
Women often struggle to recover because they have so many social contacts they are trying to maintain and other duties and activities they feel they must complete. The quiet rest is the most important issue to consider. Plus, there is no way to look at recovery from a day to day perspective. Recovery is better looked at as week to week trends. It is important to look back at activities the days before a bad day. One might get busy because they are having a good day and then the next day, they wake up a zombie. Relapse is almost always delayed by a day or so.
Are you consuming caffeine, alcohol, MSG, diet sweeteners, ,etc? Taking any other stimulants like energy drinks, etc. These are all small parts of the big picture.
And like I asked previously, what is your daily activity list like?
We can help you with sound advice. Comparing yourself to others recovery is not sound.
PCS Mikey took 3 years to recover to a functional level. I have never recovered the critical functions to live a normal life even after 12 years. My case may be extreme but I have learned tons over the past 40 years as I built up a history of head impacts. I can chart the recover from each and the functions that returned to less than full levels after each head injury.
My best to you.
|
Hi Mark! I grew up in Utah and love the west.... anyways... here was my daily schedule from above:
I am very thankful to hear some response. This is where things get confusing.... In early Oct. about 2 weeks post surgery is when I was diagnosed with PCS by my neurologist at the Mayo Clinic.... they then referred me to the Brain Rehab group at Mayo. This group consists of OT, PT, biofeedback (how does this compare to neurofeedback)...anyways.... AND I see a neuro-psychiatrist. They recommended slowly stepping back into life.... pushing myself on days I do not feel well and holding back on days I feel well. I never feel well so I have never had to "hold myself back".... but after spending some time on the boards I think maybe I have been doing too much. They said because I was so long post accident that "rest" was not recommended but more of a light schedule where I try to add more in.
My days are usually as follows.... get kids off to school (I have 2 kids ages 10/7)... come home and try to do some light picking up/laundry etc. During that time I usually get so dizzy that I have to lay back down. I also have been trying to walk a mile a day in the neighborhood. In addition, all my doc appointments are almost like a full time job in and of themselves.... and walking around Mayo is EXERCISE.... At 3 I pick kids up and try to help with dinner/homework routine.... I get nauseous just reading the homework at times. I usually fall into bed around 10 near tears that I live a life of being SO ILL. I cannot even describe how ill I feel throughout the day.... I feel like I am tipping to the left at all times and the dizziness and nausea are constant. I only have headaches on occasion. They are always on the top of my head and also cause nausea. I honestly did not know someone could be this sick and not dying.
On the weekends, I try to attend my daughters indoor soccer games and I go to church. Other than that I usually have to lay down and rest.
Could I be facing a life of this? I know everyone is saying I am very early on in my recovery but each day feels like a month. I would rather have headaches than nausea.... ironically the few times I get headaches I am ON balance.... I do not get it.
So... in addition to Amitrip. 20 mg, I have been taking fish oil, Vit B, E, and D.
I am in total despair and feel like my life is over.... also, people want to come visit and sometimes drop off food (which is nice) BUT that is exhausting as well.... sometimes it is hard to converse with people.
My husband is wonderful but very frustrated with me.... says I need a better attitude . I keep telling him he has no idea what it is like to live this way. I have to be honest that I am at a low LOW. I can't imagine ever recovering OR living like THIS. I am so thankful to all of you and definitely need support and HELP. By the way.... the Mayo clinic has not been helpful at all. I know people think "oh the Mayo Clinic".... well... let me tell you, they know nothing about TBI ... Dr Staab my Psychiatrist is a leading expert (I guess) on dizziness in the WORLD and has written some books but HE is the one who tells me to keep upping my Amitrip... which I refuse to do (I have enough issues without drug side effects)..... and he says nothing about the dizziness I have constantly,... except to have my husband shake his head back and forth then try to do something so he can see what it's like.
Has anyone else just wanted to DIE they have felt so awful? If God held out his hand to me I would accept it in a heartbeat. I NEVER thought I could ever write something like that with 2 kids etc. BUT it is the truth