Gingerly taking the right next steps

Hello dear family and friends,

Well, things are definitely progressing. Remember when I said the doctors wanted to back off all the current meds regimen because although my headaches were under control, my fatigue was off the charts, mood was too low and cognitive and memory seemed worse??

Well, I’ve been following the new program, coming right down, almost off the pain meds so far. Headache pain back in full force. I’m taking T3s as breakthrough not every day but almost.

Still fatigued but not in bed all day long, cognitive and memory not good… but having those brilliant (amazing) good moments, like a portal which is only open for about an hour every day, that allows clear/ brilliant thinking, and the rest of the time it’s a small opening that allows only small bits through.

So… the big realization was three weeks ago when I saw the brain injury rehab doctor (GF Strong Rehab physiatrist) who said the problem is not the meds but the process. The pain medication is great if I can tolerate it (which I seem to be able to do). It’s just that I’ve gone up too fast. So all doctors agree, I’m to start again really slowly. I’m at step 2 now and 3 weeks in. I’m to keep going for 4-6 weeks and then go up one step and so on..

Today, I feel like I’ve stepped off the bloody roller coaster. I was going up every week or two July and Aug, and then down again Sept and Oct (with dental surgery in there somewhere). With all the side effects it’s been seriously exhausting both mentally and emotionally.

Now, I’m feeling a bit more settled at week 3. Yay!! A couple more weeks to stabilize before any changes. Seems much more reasonable.

On another note, it took everything I had to get on a bus and train to get myself to a Korean spa last week for a soak and body scrub. After months in bed it was incredible to get my whole body treated to full exfoliation. To have help bathing and being touched with such compassion after so long was a very healing experience. I wept throughout the treatment (I confess, I’m such a softy..).

I’m still going out about every other day to a doctor or therapist appointment. Last week I’ve also started seeing a chiropractor (trying twice weekly to start) to help with my hips which are still not back to normal. I’ve always loved chiropractic therapy, has always been so energizing. I’m hoping my body will respond well and I’m already looking forward to my next session.

I’ve also found a home care helper to come for a couple of hours every few weeks. I’m so behind on everything that basic daily living isn’t consistent and I’m always in a muddle. I’m sure this will help.

Otherwise, I’m grateful for hot water heating in my building. It’s toasty warm here and comfortable.

I’m also super grateful for my friends and family who have been, and asking to, check in on me. I know I forget to call or return calls or texts. Thanks for your understanding… and if you’re waiting for me, please please just call me again or text me anytime!! It’s wonderful to have your kind and optimistic words of encouragement to thwart this awful isolation!!

Much love..❤️

John William Waterhouse (1849-1917) – Ophelia, 1910