Howdy Hydrocephalus

Understanding my unique gyroscope

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To Dream a little dream

For the first time in a month I had energy yesterday. For the first time since before Christmas I left the house. I left the house for 1 hour on December 24 to delivery some small surprises to a couple of friends. Other than that I had been in the home since December 20th and hadn’t left. I was tired, sore and had to keep my energy saved to make it through Christmas. Not only did I survive Christmas, I actually enjoyed it. I actually sort of paced myself. I did a lot of sleep and vegging after. I have not watch so much TV as I did the three days after Christmas as I have in years.

I survived the last really bad flare from SJS. It affected my body with hives, mouth & lip peeling and blisters on my face. I also had swelling in my face and my eye was in pain and very dry. But the worst was that I experienced internal bleeding that had me very concerned. I went to emerg and they couldn’t do anything but told me to make an appt. with my GP. Well I would have had to wait for a couple weeks. I am glad my body finally settled down and decided to cooperate and heal. My hair is still falling out in droves so I cut it short as I kept clogging the drains. The hair could be falling out for a number of reasons but most likely due to SJS flare and the stress on the body for having to deal with SJS. I participated in the Educate before you medicate SJS holiday campaign and you can see the video here:

I am really grateful for the strong SJS community on Facebook. However, everytime I read about a child that goes through this or see pictures of them with third degree like burns over large portion of body I cringe because of the pain they are going through. I feel the fear that the parents are feeling because they do not know if their child will recover. I hope more people can learn about this crazy scary reaction. I wouldn’t wish it on my worst enemy – that is if I had a worst enemy.

So 2014 is almost over and it has been overall a very successful year for me. My headaches are becoming more controlled. My speech has rocked! I think that is because my brain is thinking faster and I am uptaking information and processing information faster so my stutter doesn’t show itself unless I am getting overwhelmed with too much stimulation. I am able to read and say larger words like my medicine and scientific names or larger vocabulary words now. I am also knowing the meanings for some of these words too. I used to be able to do the Reader Digest vocabulary quizzes easily. Not so much now, but better than before.I still get easily tired but I am slowly building myself up. I am trying not to do too much. I have really limited activities in my life. I need to make sure my gas tank doesn’t go empty or else I will go backwards. I have been doing the brain injury re-learning thing three times a week. It is only an hour each time. Well recently I have actually been attending sessions for an hour. I was maxing out at 45 minutes for most the time. I also aim for three times a week, but mostly attend two times a week. The body doesn’t always want to do what the mind wants to do. I have been using the swim spa regularily and it has helped make me stronger. I feel good finally being able to exercise. I like that is is in the backyard because public places are too loud, too crowded that I can not function for long. I have been doing mindful breathing and meditative time. It has really worked.

My biggest accomplishment this year has been that my brain has re-wired my ability to dream again. I don’t mean hopes and dreams type of planning but actually dream when you sleep. This started about two weeks ago and I am loving it. I don’t want to get up if I am having a great dream. After my surgery, my dream world was pitch black. I then progressed to just noise and then flashes of lights and then partial pictures and the whole pictures and stayed that way for a really long time. My dreams are really messed up. Let’s not get Freudian or anything but I find them weird that I dream about my old job in Manning, Alberta but people from my job in Fort Nelson are in it. I think my brain is trying to compartmentalize. It is finally re-wiring and healing. The info is in there but it all mixed up. My brain has distinguished that they were both forestry jobs but can’t yet tell timeframes. Or something like that – I am not the neuroscientist or neuropsychologist. These dreams are action dreams like movies, with motions (not necessarily sound), somewhat of a story line or plot and I am just so excited that dreams are not a part of my life again. And that I actually remember some of them. My first dream that I had was that we were living in a warm tropical place with an awesome beach. It wasn’t very long but had action of the four of us walking and playing on the beach and then buy fruit from a vendor.

After Christmas, I stopped taking my sleeping pill. I have been using essential oils and breathing to help me go to sleep. I have been trying to get a healthy sleeping routine – well I am trying to at least. I am not sleeping as long, but I am sleeping more than without use of the oils and breathing. What gets me is the burning/ants crawling feeling is downright annoying at night as it is more pronounced.

I can’t have everything all at once and need something to work on in 2015. I can not wait for the new year. I have a feeling that is going to be an amazing year. That there will be many great things coming my way! Here’s wishing you all the same for 2015 too!


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Almighty sleeping pill power

Since I have been taking a sleeping pill lately – I now not the healthiest thing in the world, but ya gotta do what ya gotta do until I improve my sleep cycle routine etc… I have been surfing on my Ipad (with tinted glasses on to avoild the blue screen of sleep death) and finding all sorts of articles. I usually find them the next morning and think what the heck was I searching for. But this article 7 tricks to improve your memory was a great re-read. I can not remember anything that I do in those moments from taking meds to being knocked out.

When I grabbed the Ipad moments ago to surf the internet, I found out that last night I was looking at articles for memory, different alternatiive health methods, art journalling, was open with four different articles. I then looked at what apps I had open and I started doing luminosity and I guess i didn’t finish. YP shopwise (didn’t even know I had that app or what that app is) and Facebook (no one look at what I posted in case it was baaaad). I found my ipad on the side of the bed this morning and have no idea if it just slid off the bed or i placed it there thinking I had put it on the bedside bookshelf.

So I take this pill under my tongue and think that it really doesn’t work but it fact it does and maybe a little too well. This tiny little pill packs an immense type of power. I am still using my essential oils at night. But I need this crutch for a bit. I don’t have time right not to allow myself to go through an insomnia cycle naturally.

Our last Brain injury support group was about sleep, nutrition and wellness. It is so true to that things come into your life at the right time. It was good to re-learn and listen to everything. I just wish i had some answers to why my brain does not like sleep when it really badly needs it. It seems that my brain wants to have one of those lingering hanger on unhealthy relationships with insomnia.

My SJS flare is a bad one (my hair is falling out in handfuls) and I can’t afford to let me immune system get weaker. We are packing to move and Christmas is around the corner. So I will allow myself some slack and give my brain some much need recovery time and rest

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IMG_0871.JPGI have been dragging my butt since the last time I wrote. I am taking a sleeping pill at night and then still having a three to four hour nap in the day time.
There are many reasons because I feel like crude. A few are:
1) I am still recovering from Stephen Johnsons Syndrome (SJS). I am still flaring which is not fun at all. My neck and mouth still swell and get painful along with other parts of my body. I have read that the flares can take a long time to go away.
2) My pain is still not managed all the way. I have been using essential oils to help with most the pain. However, it is no match for when the pain reaches really high levels.
3) My headaches have been back, especially with the weather changes. I haven’t been experiencing as much pain (except for a few days) but I have been getting all the other symptoms. These symptoms include vision, eye watering, sickening massive pressure from the inside out, confusion and feeling tired.
4) Stress has also been a factor since we decided to buy a new home. We have seen lots of houses (too many at once overwhelm me). We went through financing to see if we can buy and then keep our current home to rent out. All is good with that now. Glad we can keep the house to move slowly!
5) Christmas time — well all but one gift has been bought. I love online shopping. Just the wrapping, cards etc…need to get done. Christmas dinner will be a potluck again this year with at least one other family.

Fatigue for me is very mentally and physically painful. My mind and body want to rest but when I lie down, I am uncomfortable and in a lot of pain so I can not rest. It will take me a long time to breath through, relax to sleep. I hate being fatigued. I hate feeling like I am in a thick syrup with a bungee cord pulling me the other way. I hate how my head feels like it on a toothpick and ready to fall off. Fatigue is not a party. It is not just “hey I get to rest because I am overtired” feeling. I hate being snappy and irritable. I hate that I don’t want to socialize or go out. I hate that no matter what I do I am utterly exhausted and do not have the energy to do anything – it is a big deal to load the damn dishwasher or make dinner. It is beyond exhausting and I have no polite term for fatigue other than I loathe it (ha ha didn’t use hate).

I have been getting so cold lately that it takes me forever to warm up. I have to crawl into bed and wrap in blankets to try to stop shivering. Especially after I drop the kids off at school. My fingers have even started to go blue. Chris didn’t believe how cold I was until I lifted up his shirt and put my hands on him. He told me that my hands shouldn’t be that cold after being inside for so long. So I made an appointment to have a phone consult with my Physiatrist. She is back from maternity leave so we will have lots to catch up on. I am wondering if my new med is making the blood pressure low again and my circulation bad. Who knows. We will find out what the underlying thing for my fatigue and cold feeling is…I need to feel better. The holidays are coming and then we are moving. I am excited and i want to show it!

I know that I am not alone. I am so grateful for Twitter and the virtual brain injured community I have found. The online community is not a bitchfest or complainers commune, but instead a safe place empathize with others, offer support and solutions. There are so many people with brain injuries that do not have any local support groups. The one ran locally where I live is more like school rather than a relaxed support group. The facilitators talk & talk & talk to us. There is very little sharing.

Brainline has a great articleFatigue article on fatigue

A fatigue poster from Brain Injury society in New Zealand.<