Figuring it out:
I feel like I have been failing at keeping up with the blog. There have been many changes happening over the past few months that have made it difficult for me to work on this.
One of the greatest challenges has been in job. There has been a mandatory transfer to a new department that has left me mentally drained.
It’s harder than my previous position. It deals with problem solving, and you have to be able to think through situations that can be unique, and I have lost that.
Prior to the injury, I was able to multi task without issue, and I was able to process information and come up with solutions. Now, it can take several other people’s assistance for me to stay focused and on topic.
For instance, I am trying to write this post, and my significant other feels it necessary to play the Inaugural speech. I explained that I didn’t want to listen to it (I’m working on this), so I he moved his laptop into the kitchen so he could listen to it while he cooks. Our place isn’t that big, and so even though it’s not as loud, I can still hear it as if I was playing it myself.
So, my attention drifts, and I’m becoming more irritated as I know that he knows that I have a hard time staying focused in the best of situations.
Frankly, it’s stressful, and I know that if you are dealing with a brain injury or CPM/EPM, that you know exactly to what I am referring.
It’s not an intentional deficit, but it’s a frustrating one.
There are days that I just want to put in ear plugs and bury myself in an underground bunker, so that I can get away from the external crap that bombards me. The dog barking, the neighbors walking, the smell that I can’t figure out where it is coming from, a light, a noise, a sigh, a cramp, a door shutting, my son playing video games, all of these stimuli crash down on me constantly!!! It pulls at my focus. I simply can’t shut the freaking things out all the time, especially if I’m tired or stressed.
It’s absolutely exhausting. It takes so much time for me to pull myself back to what I was doing, and that’s what makes doing my job so hard.
There are days when everything seems normal, like I seem normal, but then there are days when it feels like I’m going to explode or implode from stimulation overload.
(Like just now, I remembered I wanted to contact someone new that I know has a brain injury. I want to get back to several friends that are currently suffering from CPM to find out how they are doing, but by the end of this post, I will probably not remember again. You never know.)
This is where my cognitive and occupational therapist come into play. I am extremely blessed to have two of the best therapists in the world. When I work with them, it is exhausting and stressful, but they can direct me and ground me back to what I need to do.
Ironically, they currently believe that the best thing for me to do is nothing. They have suggested on numerous occasions in the past nine months that I stop working. However, if you are like me, that is probably not possible.
I am writing this post to pass along some of the insights that they have given me.
Initially, they felt that if I came to a point where I was getting stuck, that I should keep pushing forward.
If I couldn’t figure out a word, then I should keep pushing myself to try to figure out the word that I wanted to use. If I couldn’t remember exactly what I wanted to say (lost my train of thought), then I should keep working through the words and trying to explain what it was that I wanted to say.
They felt that this would help develop new neural paths, retrain my brain.
They recently discovered through conferences that this just creates additional stress on the person, and it might have a more negative impact on recovery.
It just goes to show you, nothing is set in stone. There may not be an universal answer. I think you have to use a combination that’s best for you.
They have also come to the conclusion (and this has been one that they have been saying for a while), less is more.
You have to try to eliminate stress. You have to downsize your responsibilities. I guess it goes back to the idea that you have to learn to crawl before you learn to walk.
So, if you have a hard time keeping up with your daily responsibilities, you should try to transfer those responsibilities to the person(s) in charge of your care.
For instance, today, I’ve had a very full plate. For me, post injury, I consider this a full plate, but if you’re a caregiver you might be like, that’s nothing. Keep in mind, after having a brain injury, it is difficult to get much of anything done.
My to do list for Today:
1.) Take my medications
2.) Have breakfast
3.) Go to the gym
4.) Pick up prescriptions
5.) Make fajita marinade and season chicken
6.) Go to the grocery store and buy additional chicken
7.) Write a letter my supervisor
8.) Write a letter to our human resource department
9.) Call the mortgage company (not sure if mailed payment)
10.) Mail Thank You card
11.) Mail invitations
12.) Clean out car
13.) Write to Cedar Fair
14.) Check for Shoes
15.) Pay bills
16.) Write blog post
17.) Check on status of portrait (order placed in November)
What I actually did:
1.) Made fajita marinade
2.) Went to the grocery store and bought chicken
3.) Wrote a letter to my supervisor
4.) Wrote a letter to my human resource department
5.) Wrote a letter to my lawyer
6.) Worked on my blog post
7.) Called the mortgage company
This was a full day for me. I’m exhausted now. I’m ready for a break, and that was the point of my therapists. Prior to this, I would feel guilty for not getting everything done or I would chastise myself.
You can’t do that. You do have to simplify. You also have to prioritize. Were the things that I did today necessary? For the most part, yes.
You need to put you first, and make rational decisions on what is WORTH your physical and mental energy, and you have to be accepting of your decisions with the knowledge that they are, for the most part, not set in stone.
The Building blocks to rebuilding you:
1.) Let go of what stresses you.
2.) Simplify your responsibilities where you can.
3.) Accept that you have new limits.
4.) Be happy with your decisions.
5.) Understand that you, for the most part, can change your mind.
6.) Prioritize your responsibilities based on what is worth your physical and mental energy.
I hope this foundation helps you in moving forward in your brain injury recovery.
Hyponatremia and Central Pontine Myelinolysis 
I have CPM and like you can’t follow a conversation when there is more than two people talking. If someone interrupts my attention is drawn to that person and it’s as if the original person I was speaking to had never existed. I can’t follow the thread when in a group and end up sitting quietly hoping that nobody will notice and ask me to comment. I get stressed and word search a lot. I also notice that my tremor becomes much more pronounced and my voice gets hoarse and shaky. It’s like that terrible feeling people without brain damage have when they can’t remember the name of a film. They know it’s in there somewhere, just on the tip of their tongue and they know it will come to them eventually. It happens to them a few times a month. With me every conversation can be like that. Chasing words around my head that at the last second just avoid me. It’s exhausting. So I end up using words that are similar or describing the word or drawing little pictures in the air. I sometimes end up saying things that will be rude because I can’t be diplomatic. I can’t find the right way to say it so I say it like it is
When I have too much to do I have to prioritise and plan my day. If I can delegate I will. I always rest up the day before I have to go out and plan to make some time in the evening to recover. Taking a shower before going out is tiering, but if I have to wash and dry my hair then the rest of the day will be a total wipe out and nothing gets done. Even if I have paced myself the fatigue can hit at any moment without warning. My left leg, arm, eyesight, muscles, cognitive skills or swallow will decide it has had enough. On bad days I get muscle spasms that start at the top of my rib cage go up my neck, ears and face and end up feeling like a spike has been pushed through the top of my head. On really bad days it can all go on at once. I do get some breaks from some of the symptoms. Some can bother me for months and then disappear for months. Some never come back and other new ones can raise their ugly heads. Belly dancers belly is a weird and wonderful one and is a rare symptom of CPM. Your tummy has a mind of it’s own and will actually shudder or undulate. It’s really an odd feeling. I had to realise that I can’t expect my body to work the way it once did. That something had to give and unfortunately for me it was my job. Not only that but my family have suffered because I was always looking after them and took pride in my home and loved to cook. I use a mobility scooter now to get me around town. I hate it but it does save me lots of energy that I can put towards spending time with family or just being able to listen to them or watch a film together. I suppose what I’m trying to say is use what energy you do have wisely. Order your shopping online, get someone else to fill in the form you need. Pay bills by direct debit. Keep a calendar in the kitchen with space to write things on. Get a blackboard. Get a scooter or wheelchair don’t be too proud. Don’t waste time ironing. Get a RADAR key if you have trouble with bladder or bowels. It opens every disabled loo in the UK. Don’t know what the equivalent is elsewhere in the world. Get a card printed that says
I AM A SURVIVOR OF A BRAIN INJURY
I may have problems with my memory speech
or actions
Your help and patience would be appreciated
It’s amazing how often it comes in handy and people are usually so helpful. It also calms me down because the tension is taken out of the situation and after a few deep breaths I can continue my conversation or action. Believe it or not people just need to be aware that you can’t see brain injury. We do look and feel just like them.
I am so glad to hear from you Elle. Please feel free to leave details of your journey with CPM, and I will be happy to make a page for you charting your experiences.
I’ve been horribly sick today, or I would leave a better response, but I am so glad to hear from you.
One of the hardest things for me is to be told by doctors this crap is not real or that it’s not that bad, but when I hear that other people have this injury and are experiencing the same issues as me, then I know it is real.
You are not alone. I am not alone.
I have the same types of fluctuations that you do. There doesn’t seem to be any rhyme or reason to our symptoms. They will come and go, and that’s another thing that doctors don’t really believe or understand.
Thank You!!!! You have really helped me by responding. Please feel free to continue to post comments, suggestions, your story, etc. And I will edit it and put your story here.
The only way we are going to get more awareness about CPM is by documenting it. Maybe at some point doctors will actually start listening to and believing what we tell them.
GOD BLESS!!!!
Sorry to hear your feeling poorly. Take some time out and allow yourself to feel sick. We are so wrapped up in what we have to do and pushing through the bad times we forget to rest. The old saying “Don’t put off what you can do today” is a load of rubbish when you suffer from CPM. If you can put it off to the next day or week or month then do it.
I am writing down my journey regarding CPM. It’s in a bit of a muddle at the moment but I will send it to you when it’s finished.
Take care
Thank you, Elle.
I am feeling much better. It seems when I get sick now, it takes longer and more effort to recover.
I have to say that I agree with you 100%. It is important to do less so that we can recover more. This has also been the new advice from my cognitive therapist. The more stressed and fatigued that we are, the worse that our condition becomes.
One thing that you mentioned before has really resonated for me. The fact that your symptoms fluctuate, some seem to get better, some go away for awhile and then come back, and then you have these weird periods where new symptoms begin. This is exactly what I’ve been going through. There doesn’t seem to be any reason to what I experience. Things just happen when they happen, and I have no control or understanding as to why.
I am very excited to get your story, and look forward to hearing from you. If you want to meet others with CPM, please let me know. There are several people in the UK that I have contact with now that have it. I also have contacts here to. It’s good to know that you aren’t alone in your experiences.
Hope you are doing well. Have a great day 🙂