The Wheels of the Wagon..... a bit cranky this morning?

Land_Rocket

So, a week on from my "Monday Morning is going well......"

I'm going to apologise that I'd not posted before, but there is a lot going on right now, and one thing in particular is incredibly important to me right now, and I've only got a week to sort it out, so everything else went on hold...

Well, last week, on Friday (15th May), the Bristol Communication Aid Service (BCAS) came to see me, and finally let me have a Tobii I-12 device on loan for a whole 7 days. The thing is, I've been waiting around 6 months to try and get one of these devices, but every time I've visited them, it's refused to work. I put it down to stress, and told them I wanted a week at home with it.

The Tobii I-12 is a communicating computer, but it works using a technology called "eye-gaze". This means you just literally "look" at the screen, and it does things.

Well, Friday morning they dropped it off, and I spent all day trying to get this thing working. It refused to play ball. Every time I looked at something, it wobbled, and just absolutely was not reliable. So, it was time to take drastic action.

First thing Saturday morning, my carer phoned the local optician. They had a cancellation, but it was in 30 minutes time. Town is 2 miles away. We literally dropped everything, and I started playing "racecar" with my wheelchair. I made it with 2 minutes to spare.

So, I did the opticians test. Then came the mini-bombshell. Back when I was very young, I'd had an operation to fix a squint and a lazy eye. It had come back to bite me.

My left eye was 20/13 vision - which is 2 points better than 20/20. My right eye was doing 20/20. The problem was, as my brain saw my right eye as inferior, it was literally switching it off. If I close one eye, I can see through both. But when they are both open, my brain says no.

For the eye gaze computer, this meant that when I was looking at it, the left eye was looking at what I wanted fine. The right one was doing it's own thing. We changed a setting on the computer, and managed to confirm it. The computer didn't know which eye to follow!

I was devastated. It had been 2 years in total since I'd used my iPad or my desktop computer on it's own. My old Dynavox Maestro is unreliable and it works by pressing a single red button on my wheelchair. It is SLOW!. Everything takes ages to type out, and then I have to save it to USB, which can then be taken to the desktop PC, and pasted into the web. It's just absolute rubbish.

I felt absolutely gutted. I felt my life was well and truly over. The one part of me that I thought was good (my head) had something wrong with it, and it was going to rob me of my last chance at independence.

I went to the nearest pub. I had stopped drinking and had been making better food choices for over 2 years now.

8000 calories later........

Next morning, a weight check confirmed the current damage. A gain of around 2kg. I just hung my head in shame. I had been a fool. The wagon had seriously derailed this time, and I just wondered if my life could get any worse. I spent the whole of Sunday being just totally miserable, but I did damage limitation and didn't go over allowance. That was probably more down to having no chocolate/crisps/ice cream in the house, rather than me being good.

We told the communication aid service on Monday and expected them to come and pick the communication aid up. To my surprise, they told us how to get into the settings, and how to tell the computer to track only the left eye!!!

We ran the set-up program. All of a sudden, it was behaving!

For the whole of the day, I didn't stop using that computer and proving it now allowed me to talk, something I hadn't done in 6 months. I quickly got my carer to take a video and I wrote a mini-essay to say hi to my friends and to beg Bristol to hurry up and get me my own device now that the problem was solved (these things are £15k each, so they don't like giving them out too voluntarily - especially when they think you can't use it properly). We posted it to FaceBook.

Things were on the up. My mood changed immediately. The wagon that I had wrecked was on the mend.

Today, I got my weight checked again. I had gone down 1.1kg since Sunday (2 days). Where I had felt so bad for putting all the weight on, the true damage was now only 0.9kg instead of 2kg.

I'd been a victim of not listening to myself. There had obviously been a lot of water weight, or god-knows-what in that 2kg. I should of just not weighed that week and waited for the whole week to pass, and then I would have seen that actually, it wasn't that bad at all.

So, a bad story turns good. To top it all off, because of the bank holiday, I get to keep the communication aid an extra few days. They were supposed to be picking it up on Friday 22nd. They've said I can have it until Tuesday 26th. I'm going to work it's little bottom off, and enjoy it whilst it's in my home.

The point? No matter how bad you think things are, try to be strong. It may not be as bad as you think.

Willpower is EVERYTHING in this game....

9ofthem

How Absolutely Awesome! Now that you can prove it works, how hard do you think it will be to get one?

I know how you felt though. I have hit walls that made be believe that this is as good as it gets and will all be down hill terrible from then on out. A new med, a new adaptation, a new plot twist and life changes so fast. Multiple times of facing death and I am still alive remind me to not believe the momentary despair. Always give it time and never think about bad things after dark. Life is truly better in the daylight.

I am glad your weight didn't go crazy while your emotional roller-coaster messed with your calories. I have had company all week and everyone wanted to have drinks every night. I only have a glass of wine 1-3 times a week for sleep. This was a lot of calories to waste this week on drinking. It made me feel sluggish and grumpy. I think I wasn't getting enough good nutrition. I only get 1200 calories per day on the diet the dr put me on. Not a lot of wiggle room. lol.

So happy for you. Enjoy every minute of your toy while you have it.

Mezzie1024

I hope you can get one to keep soon. What will be the wait time for that? I'm so glad you were able to set it to just track one eye!

Land_Rocket

Unfortunately I dont know how long, but what I do know is that I didn't have a chance at all if it wasn't working reliably.

All I can do now is keep sending videos to them,and hope they realise what it would mean to me.

I know these things take time, which can be disheartening, it took wheelchair services a year to give me a powered wheelchair when my old one was giving up the ghost, so I know they don't rush.

But, patience is a virtue. I know it will be worth it in the end.

It does make me want to win the lottery though. I could spend a million overnight. New house, new van, new chair, new communication aid. Yep, I could soon blow it lol.

9ofthem

I would love to win the lottery, too. I have planned it down to the penny on how I would spend it if it ever happened. Problem is, I don't play the lottery. ha ha ha!

Land_Rocket, what country are you in? Your accent makes me think UK. Does the health care cause issues with services like this?

Land_Rocket

Busted! Yes I am in indeed in the UK.

The UK apparently has one of the greatest health care systems in the world. In reality, I can't complain about it, as I know that if anything happens, I'm covered. The local hospital has an out-of-hours doctor who you can see if something really can't wait until the morning. In reality, this works great for new problems.

When your disability means that you physically unable to do things, then money takes over. Money pays for carer hours which translates into being able to do a lot more. So if you've not got the ability, or the money, it can be demotivating. It can feel like that unreachable goal - like a weight loss plateau. Not enough money to pay for more carer hours means you are always having to "rush" and "shortcut" everything. It only takes 3 minutes to put a meal in the microwave - but it takes a lot longer to prepare a meal from scratch. Of course, then there is "Plan B". Plan B is where you physically exert yourself above and beyond what is safe and sensible, to try and do things independently. Trust me, that one will always come back to bite you on the bottom!.

Funny enough, I did a "Plan B" on Tuesday. I had a mobility company come out to see what the possibility would be of me being able to drive(!) - yes a scary thought. They set up this vehicle with all these wonderful fancy gadgets. And I was able to drive around the street for 20 minutes, but of course I was trying too hard. I got back in, and after a rest - I was hurting. BADLY. That night, I had to go to the accident unit who filled me up with Morphine, as I was in so much pain. Yes, I'm a man and I was crying. And it was all my own stupidity that caused it, by doing something I knew was above and beyond safe and sensible. And of course, now I've got to rest for days to let my body heal. Now, I've got to have them come back out and start again, because obviously I'm going to either try something that requires a lot less effort, or write it off that I've got no chance of driving. I'm not actually bothered if I can't drive, I just wanted to know in my own mind.

But again, instead of complaining and being depressed about it, the best course of action is: Be happy with what you have. You don't need everything to be happy. All you need to be happy is yourself. Again, I go back to motivation, and how the mind is a very powerful thing.

I believe things are much worse in the USA; nearly everything seems to have to be approved by Medicaid/Medicare, and they are a lot meaner about spending money than the UK's NHS are. For example, I know that if I ever need "Sudocrem" which I use by the truck load, the doctor will never say no.

@Mezzie1024 you are making me a little bit jealous at the moment with all this swimming! It would be wonderful if I could get into swimming myself, but as a quadriplegic, I'm just destined to get in the water and sink to the bottom like a stone. And then of course, if I do want to go swimming, you have to have 2 carers for that one, so is very difficult to set up.

I think it's probably one of the reasons that I will go on about motivation so much. I have days, like everyone else, where I'm just totally fed up. There's 1000+ channels of rubbish on the TV and it's a lovely sunny day, but I'm stuck at home staring at the horrible wallpaper! The "bad" feelings are the ones that will make you go to the freezer and eat 2000 calories of ice cream! But, I have learnt that when I feel bad, I have to give myself a kick up the bum and tell myself "hey, you're doing great!" The beer belly is pretty much gone, I can see a drastic difference between old photos and "today" photos. I feel better in myself, to the point I can tell myself - I definitely feel that I'm going to live longer than I would have before.

Sometimes I do need to listen to myself a bit more, and practice what I preach

9ofthem

Practice what I preach is the same for me. I can talk a good talk, but then over do it to the point of meds, too.

The USA has issues for sure, but it is all about bureaucracy and money. I have private insurance through my husband's job. This is usually better than the state aids like Medicaid and Medicare. Those are a wreck. I have a love/hate relationship with insurance. Glad I have it, but hate to deal with them. lol

I blew it myself this week. One of my sons got in trouble with the law and my stress level hit the roof. I went out to eat for breakfast the next morning at a "greasy spoon" type place. Fried everything. I ate and ate and ate. I then went to do the grocery shopping. I felt so sick. The only reason I didn't throw up and be done was because I didn't want to lose my meds. They are too expensive to lose to stupidity. A gazillion calories in one sitting. Next day I did it again for my anniversary. I am not expecting any weightloss this week. My own behavior set me back.

I, too, can't exercise at whim. I am lucky to pace myself to do the basics of life. I'm kind of between the two of you.

Land_Rocket

Wow, I remember the old "greasy spoons".... many years ago when I used to travel around with my father, we'd always stop off at a greasy spoon; especially on long journeys - holiday times, we used to go between Essex and Glasgow which was around a 8ish hour drive(?) I think, and we'd always pull off somewhere to stop at a little cafe. For £2.50 (around $4) they'd bring you out a plate that was 4 times the size of me back then...

Bacon, Sausage, Fried Eggs, Beans, Black Pudding, Hash Browns, Fried Toast, Buttered Toast, Bread, Mushrooms, Fried Tomatoes.... the FULL monty.. If I had been able to calorie count back then, it must of been the equivalent of the daily allowance of 6-7 fully grown adults LMAO

But, hey, back then, I didn't care less... young, and daft

Admittedly, this calorie counting made me realise how easy it is to eat too much. I would say that would probably be most people's downfall.. you really don't know how many calories you are eating until you actually work it out, and when you realise what your body needs, it really doesn't surprise me how you can gain weight so easily.

It's the reason I have to keep telling myself that it is a lifestyle change and NOT a diet... because no matter what, I will never go back to my old habits, because otherwise I'll be back to square 1 before you know it.

Being mobility challenged and indoors a lot, my biggest problem now is boredom. If I'm struggling to find things to occupy my time, I will start nibbling on anything - cheese, toast, you name it.... we have started buying carrots now to try and make it a healthier option, but I've polished off 600 cals of carrot before lol. The best thing to do there for me is to try and plan the day before what I'm going to do the next day, and just try and keep my mind occupied.

FarmVille anyone? lol

9ofthem

Candy Crush. lol!

Definitely more cals than ny lumberjack would need. I didn't even eat the whole plate and was ill. Hopefully learned my lesson. I have been close, but not quite right on cals, except for our anniversary dinner. I had planned on a cheat holiday. I ate so much good sushi, but it was the wine that got me there.

Mental boredom is tough. I read, play online games, do some hand work, look at pinterest, and looking at online realestate. Another I do is take house plan books, a pen, and critique the plans or redo them. Having walkways through the kitchen sends me over the edge. As time has gone on, I have started critiquing their handicap accessibility. lol.