Reply To: ANYONE EXPERIENCING GBS (patient or caregiver)
See GH above. Answers vary widely depending on length of time… Since you are a student, I’ll answer with what a student might need to know, including motivation for patients still in OT, if I can keep that organized in my brain.
1. Hospital/Nursing Facility wouldn’t allow me to go home until I could transfer myself from wheelchair to toilet/bed and brush my teeth. Back home, caretaker Mom wasn’t any more comfortable with the idea of bathing me than I was. She stayed in the next room with bathroom door open so we could communicate without yelling. No one has helped with toenail clipping…and it is still difficult and painful for me to do myself 5 years after onset. The orthotics I had to wear made that worse because my feet slid enough in them, but my toes were numb and I couldn’t feel my toes getting smashed until the pain arrived all-of-a-sudden. I couldn’t brush my hair for a couple of months. I didn’t bother with clothes that needed buttons. Forget zipping up my winter coat- even on the days it was snowing or -15 degrees outside. Home Health person tried to teach me to hold an electric toothbrush. I’m pretty sure she had to reapply her makeup…
2. Started out back at home confined to the wheelchair unless I transferred. Canes and walkers were useless to me due to previous disability. Spent about 2 months slowly and painfully walking and using wheelchair when exhausted. PT wasn’t happy about that, but it wasn’t her legs/back. Now I don’t use anything, although I kinda miss the chair when I’m over-tired/the electric scooter at the grocery when I need to save energy for later in the day.
3. Utensils were interesting until I got my aim back.
4. I had quit my job not long after initial symptoms started. It was very physical, and the increasing tripping (foot drop) made people think I was “on something”. I miss the $ and parts of the job. Thank goodness I had a decent savings built up. I could do most of the job, but I would need to rest/do sit-down work more, and I have no love lost for the company or my co-workers. I really need to change careers-not sure about what else I can do w/out more education.
5. At first I had to rely on Mom to drive me around, help get meds ready.
6. Also had a meal service, but that was gross. Then I got meals-on-wheels. Better, but I really didn’t like some of the foods (finicky), and others bothered my increasing food intolerances/allergies.
8. I get overwhelmed with some chores. Standing to do dishes doesn’t last long. Mopping is aggravating. I gained so much weight from meds that I had to buy new clothes. (Used wouldn’t work because of skin issues-missing tags with materials…) So laundry makes me sad. And annoyed trying to find room for everything. I’ve donated some clothes, but not my old favorites.
9. My savings are long gone. I appreciate the help I’ve gotten, but it isn’t enough to even think about moving out on my own plus doing all of the chores/cooking.
10. I’ve always had insomnia. Now I fall asleep easier due to exhaustion. Laying down too long hurts my back. Having to lay down extra (when I have a cold) sucks. (Sorry!)
11. The weight gain is hard on my self image. I’m strong for surviving GBS so well, but I look like I’m lazy.
12. I want a job, but completely having to change careers is hard to keep in mind, not knowing what else I can do as well as I’d like to. And can do. The stress is too time-consuming.
14. I want to go to school, but 1. $ 2. This exhaustion makes my ADD worse.
15. I still have a shower chair and grab bar. Standing is too risky.
I have a reacher that I forget to use, larger knob on a favorite lamp, and I installed an extra handrail on
most frequently used stairs.
16. Not much to do out here in the boonies. Don’t have enough extra $ or energy to go very far for very long. I
read a lot, but that makes me drowsy. I want to exercise more.
17. Endurance is way down. Crowds, especially rowdy kids, make me uncomfortable. They always did, but now I worry about being knocked down.
18. No support system except GBS group.
19. I want to do stuff, but $ concerns and being kinda shy make it hard.
20. I’ve been trying to do so, but it is more work to maintain, explain…and I get tired so early, even with naps.
Speaking of naps, I’m going night-night now.