So what composes of a huge day when you only live in bed? Having a shower. It’s such a huge amount of energy output that I only have a shower about once a month now. How bad does it get before I have this shower? Really bad! I smell about three kinds of onions under my armpits, and my top starts feeling like canvas at the front at the top because of dropping so much food on myself for weeks and not changing it. I do change and wash my underpants more often. But not the rest of my clothes, … Continue reading Huge Day, Showering
I’ve reached a point where sound is hurting me physically. Particularly loud sounds. Loud voices with no melody to them (foghorn voices), vacuum cleaners, leaf blowers, horns, plastic bags, cymbals, trumpets, trombones, saxophones, cars revving: my worst nightmares right now. They feel like hundreds of little spears hitting my arms and torso and ears and the sides of my head. I feel really on edge. My apartment is facing a busy road. The traffic noise hurts. I can hardly wait to move to the apartment I’m waiting to move to, which doesn’t have much traffic noise at all. I’m in … Continue reading Sound Sensitivity
Lying in bed all the time, you can’t help but feel grief for the losses you’ve had getting to this point and the ongoing losses you face. The loss of friendships of those who’ve just moved on, those who don’t understand, those who think you just need a positive attitude and you’ll be fine. And those who drop off without the input you used to give out. The loss of what you could be doing in your life if you were up walking around. The loss of what you used to be able to do. Your loss of your old … Continue reading Loss and depression
So yesterday I had the Podiatrist come and she was here for 40 minutes while she checked my circulation and cut my toenails. The ultrasound took as long as the rest I think. I chatted with her while she was here, trying to make her feel comfy being here. Today I can barely function because I used that extra energy yesterday. It’s hard to move my arms at all, even to get them to flop down, and it’s hard to talk or reach my motorised bed controls to sit myself up or lay myself down. My energy is really low. … Continue reading Paying for energy use
Today I had my first Podiatrist visit ever. She visited me at home. She checked my blood circulation in my feet with an ultrasound, and cut and polished my toenails. I used to think needing a Podiatrist was one of the last lines to cross into being geriatric. I thought Podiatrists were old men in white coats. She was a young woman who had a blue uniform on and a white plastic apron over it. She was a gentle, funny, kind human being, and it wasn’t an awful experience. Maybe it’s not just for geriatrics after all. She let me … Continue reading Podiatrist
Something that brings be great joy and comfort, and companionship when I’m very isolated living in bed, is having a pet. My pet is a cat. She’s about 15 years old, and her name is Sasa Bear. She loves sleeping in my wheelchair or on my bed by my feet where she’s known to trap them in her claws if they encroach her space when she’s hungry or playful. Sasa loves chatting with me using little grunt noises. She knows how I’m feeling and stays closer to me when I’m depressed or more paralysed. When my legs are working less … Continue reading Having a pet
I carry with me everywhere, a small box of sensory items called my Safety Box. I use it to look through, smell, feel, write or draw with, etc, to help keep me grounded. I take it to hospitals with me every time I go to hospital. I take it out with me. I have it at home. I used to take it to therapy with me when I went to therapy. It helps my overloaded brain to distract and engage with the sensory experiences in this Safety Box, to ground me to keep me calm and to help me reduce … Continue reading My Safety Box
Reducing things which overload my brain definitely helps my Functional Neurological Disorder (FND). The things I’ve worked out which overload my brain are: stress, being tired, being asked lots of questions in a row, especially being asked verbally, repetitive movement of limbs especially, and noise (especially loud noises, or noises like cymbals, trombones, trumpets, plastic bags, sometimes voices particularly certain voices, vacuum cleaners, leaf blowers, lawnmowers- these physically hurt my skin and ears, especially my arms and torso). When I get overloaded my mobility deteriorates, my speech immediately starts deteriorating, even mid-sentence, and my cognitive abilities malfunction to the point … Continue reading What helps my Functional Neurological Disorder?
People will be reading this blog for all different reasons. My initial aims were to reach out to others also living predominantly in bed to help them know they aren’t alone, and to help those with no experience of this develop some insight of what it’s like. I’ve realised there are a lot more things I could do with this blog, like educating about what I understand about Functional Neurological Disorder, how I’ve tried to treat my FND, what I understand about depression, and Complex Post Traumatic Stress Disorder, and parenting from bed, etc. What would you yourself most like … Continue reading Let me know your thoughts!
Functional Neurological Disorder (FND) is complex and poorly understood, even among most doctors. There’s no quick fix for it. Sometimes a multidisciplinary team and rehab can be beneficial. Routine medical testing is usually normal, though there are particular signs of FND which experts look for to help confirm the diagnosis. Symptoms can include limb weakness, paralysis, blindness, deafness, seizures, gait disorders, pain, fatigue, abnormal movements and tremors. Speech, swallowing and continence issues can be evident too. Outcomes vary. Many people with FND remain symptomatic and disabled. Those who get treatment quickly after onset of symptoms, have a good experience of … Continue reading Functional Neurological Disorder