Howdy Hydrocephalus

Understanding my unique gyroscope


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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.<



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