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It's been a while since I posted ! Here are some of my favourite things, yarn by #burrowandsoar @burrow_and_soar , tea and #angelfoodcake (genovese to the rest of us!) #mamimaycrochet #knitting #knittersofinstagram #handdyedyarn #comingback #ptsd #iihuk #pseudocerebri 💕💙💚 #iihawarenessmonth https://www.instagram.com/p/B102_jfpL8k/?igshid=195v46oefgixn
So I tend not to get personal, but September is IIH Awareness month and hey, I have this. And it fucking sucks. I have two shunts, one in my brain and one in my spine, and I still have constant pain and pressure in my head. I can't take the only medication that is used to treat this because it makes me suicidal and I can't eat anything on it. I fear every single headache I have because I don't want to have more surgery - and that is my only option - because the last recovery was so brutal. My first surgery for the shunt in my brain resulted in blood clots in my lungs so the second surgery for the shunt in my spine was frightening. I have a 6 year old and he's gotten used to me not being able to interact, to not be able to do anything. I have days where I can't remember words or how to do laundry. I have crazy mood swings. I have a constant ringing in my ears that can drive me crazy if I don't have some sort of noise to concentrate on. I'm depressed and have anxiety. I get lumbar punctures by choice. My vision is stable but I still wake up to double vision every morning. It will swim and go grey in spots if my pressure is high. It is a completely invisible illness. There is very little research being done on what causes it. No one knows and frankly, it's rare enough that it's not worth it to study it. All the research is on how to treat the symptoms, which off label prescriptions might treat one part of the disease. It's not just a headache. It won't ever go away. All I can hope for is remission.
Off to get my eyes tested blurry vision in my right eye nothing to do with my #heterocromia #oneblueeye #onegreeneye #mamimaycrochet #iihawarenessmonth #iihuk 💙💚 https://www.instagram.com/p/CLG_2qfJ92G_jeUfPoiNX6hcTGb7pLAWnoxxJ80/?igshid=og2c0bt5cua8
Second book, first chocolate bar = how I am celebrating two hours hanging in the hospital! #annualvisit #dontpanicimfine #iihawarenessmonth https://www.instagram.com/p/B2PlHvnhm1J/?igshid=1ty5hzazpmi58
Visual field time. #iihawarenessmonth #eyehealth #beep https://www.instagram.com/p/B2PdJtJh9fA/?igshid=1hpm1gi97zuw5
It begins. I sit in the #waitingroom at 2:06pm. Four books for reading, one notebook, one pen, two chocolate bars and a full bottle of water. Let’s see how it goes. It’s #TurbinTime — he’s my eye specialist. He’s the guy that had my eye in his hand ten years ago — figuratively and literally. He helped me save my sight. He made the reading and writing in these books possible. I’ll wait as long as it takes. It’s Intracranial Hypertension Awareness month. Head to ihrfoundation.org to learn more or to donate. Head to @onwardpodcast, episode 18 to hear a bit about my journey with #IIH. #iihawarenessmonth https://www.instagram.com/p/B2PaaURBaui/?igshid=5eczw2y5ig4i
This is what #iih looks like #iihuk #iihawarenessmonth #pseudotumorcerebri #shuntlife #cerebralstenosis #headache #generallyfeelingcrappy #mamimaycrochet 🤯💙💚🤕 https://www.instagram.com/p/B2B6KyTpRp2/?igshid=1gge6scjx3f7e
Which would you choose? Sleep for 8 hours a night in interrupted, or be pain free for 8 hours a day? Let us know in the comments which one you would choose and why. #iih #iihbrainstrust #iihawarenessmonth #bih #ptc #spoonie #spoonielife #soooniewarrior #choices #chronicillness #chronicpain #cantsleep #painsomnia
