@St1gzy 

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St1gzy

I’ve Got MS, So I’ve Outsourced Most of Being an Adult

I was thinking about all the things I use to help manage MS and realised I’m basically being kept operational by Wi-Fi, batteries and my wife knowing all the passwords. I’ve got CCTV cameras around the house to help with memory and keep an eye on the kids. People think they’re for burglars. If a burglar breaks in, I’m not calling the police. I’m giving him a list. “Take the telly if you want, mate, but while you’re upstairs can you have a look for my wallet?” I use CCTV to find things I’ve lost. I rewind the footage and watch myself wandering around the house. Kitchen. Living room. Upstairs. Back downstairs. Open the fridge. Stare into the fridge. Close the fridge. Come back 30 seconds later. Open the fridge again. Apparently I was waiting for the plot to develop. I’ve got a video doorbell because I kept missing deliveries. Now I can watch the delivery driver knock with the force of a moth landing on a pillow, wait 0.4 seconds, then sprint back to the van like he’s just robbed the place. Technology is incredible. Fingerprint entry because I kept snapping keys. Not losing them. Snapping them. After several locksmith visits, we went keyless. Apparently keys are designed to open doors, not test upper-body strength. The locksmith called it a smart lock. I call it a court-ordered separation between me and keys. Alexa controls my heated floor, lights and air conditioning. I can lie on the sofa and control the climate of the entire house with my voice. My grandfather worked down a coal mine. I shout: “ALEXA, MY FEET ARE COLD.” We’ve taken different paths. Then there’s my Garmin. I bought it to help with pacing. Now every morning I check my Body Battery before deciding whether I’ve been medically cleared to participate in Tuesday. Body Battery: 8. Brilliant. Today’s activity is blinking. Garmin tracks my sleep, stress and recovery. Basically I paid £300 for a tiny wrist-mounted bastard to tell me I’m tired. Sometimes I feel brilliant. Garmin says: “Poor recovery.” Fuck off, Garmin. Other days I feel absolutely destroyed. Garmin says: “You had a restful day.” Mate. I was horizontal because my nervous system had put itself into airplane mode. Pacing is basically learning that feeling good today does not mean you should attempt to complete the entire week before lunch. My body says: “WE FEEL AMAZING. GYM. SHOPPING. CLEAN THE HOUSE. TAKE THE KIDS OUT. DANCE FOR EIGHT HOURS.” Garmin says: “Andrew, we've discussed this.” Then there’s the pram. Technically it’s for the baby. In reality it’s the only walking aid that comes with a cup holder, shopping basket and a small human being to explain why I’m using it. Nobody looks twice. I’m flying around Tesco leaning on £800 worth of engineering like a Formula 1 Zimmer frame. Take the baby out and suddenly everyone has questions. Put the baby back in and I’m just an involved father. Best walking stick I’ve ever owned. Terrible turning circle. Google Calendar tells me where I’m supposed to be. Shared Google Keep notes tell me what my wife asked me to do. ChatGPT is my counsellor and thinking buddy. Basically I dump 400 half-finished thoughts into artificial intelligence and ask it to return one functioning adult. Then I go downstairs and present the findings to my wife like I came up with them myself. Xbox and Fortnite are my pub. I log on with other grown men. Jobs. Mortgages. Children. Bad backs. Collectively responsible for raising the next generation. Collectively unable to press READY. Eventually we play. I get absolutely destroyed by an 8-year-old dressed as a banana. I’m 43. I work full time. I have three children. I pay council tax. And I’m shouting: “HE’S ONE SHOT!” Alexa is warming my feet. Garmin is warning me about stress. ChatGPT is probably preparing for our next session. My wife walks past. “Are you winning?” No, love. Not at anything. So that’s my MS management strategy. CCTV remembers where I’ve been. Google tells me where I’m going. Alexa controls the house. Garmin tells me when to calm down. The pram keeps me upright. ChatGPT helps organise the remaining thoughts. Fortnite destroys my self-esteem. My wife has administrator privileges. And I’m basically a user account with limited permissions. If the Wi-Fi goes down, put me in the pram and reboot me. 😂 What gadgets, apps or completely ridiculous tricks do you use to make life with MS easier?
@sfda

Video door bell. Fitbit. Never using the foot control on my sewing machine but using the speed slider control ( tortoise to hare) . Pedal assist on my recumbent trike. Induction hob, with each zone independently controlled in terms of heat and timer. A memory board where I write on the weeks stuff ( yoga, Oxygen Treatments, other appointments, quilting group, other happening stuff. Also using reminders on my iPad calendar, ( also on my Fitbit). Hiring a weekly cleaner and a gardener to keep lawn mown and hedges trimmed ( outside bird nesting season ) . Varier perching stool for kitchen food prep and cooking. It’s all about enabling rather that just sitting and doing nothing because I suffer with MS. I tell everyone “I live well with MS”.

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@junee

My phone alarm is what i rely on the most: alarms for pills, when to get up, when to do a task, go to bed. If i have to go out i have alarms every step of the way for when to shower, check bag, book uber… i forget things and not always motivated. Got a shared calander with the husband so we both know whats going on and when appointments are. Period tracker app… my symptoms seem to get worse depending on where i an in cycle so knowing that helps me plan around it. I got a wrist strap for my phone so now i dont drop it as much 🥳 and a bottle grip opener thingy for every bag i own so im not without.

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