What time of the day is it? Fabulous! What are you growing at the moment? Grass! What's happening with the laundry at the moment? Piles are reshaped! Lol we all need to learn how to reframe. What I'm trying to learn at the moment is not just replacing my negative thoughts with positive thoughts, but acknowledging the negative and hard stuff honestly, grieving, and choosing realistic "light filled" perspectives. A friend cried for me on the phone yesterday, and just said that it sucks and we don't know why all this is happening, maybe we won't ever know this side of heaven. But the view over there is going to be GLORIOUS. I wonder what you could ask for help with around the house from church members or friends? My dad absolutely refuses to ever pay someone to mow the lawn or wash the car (while other people always pay and have never done handy work in their lives) but I was thinking my carers are already doing so much for me, and dear friends want to help out but don't know how. "You know what would be a real blessing? Someone to wash the car every few months." And we might lose some pride over that but doing small things to change the physical surroundings would also help my mental health a lot. I'm asking a friend to visit and hang out, but while we hang out, do some small redecorating so my bedroom is a restful delightful space.
I recommend you google '7 cups' or '7cups' and sign up for a participater account. It can be accessed by mobile phone, or by computer, it is free to sign up etc although you can pay to access more things but don't have to. I think it would provide you with a distraction as needed, and it has lots of 'beneficial' effects (such as interactive guides on mental health topics that are very similar to some kind of therapies but simplifed, one to one AND group chats, shows your achievements, rewards kind actions, and much more). It also gives you some time to calm down as there are meditations/visualisations. Go check it out!!
we try to do redirect coping mechanism. we also do friend mode were we go into friends only so we can discuss relationship things without taking it personal.
I took 1hr to get ready when I noticed myself getting tired (this is before being signed off work and having a diagnosis of severe depression). I then had to increase it to an hour and a half after the depression diagnosis and being not at work. I then had to increase it to two hours with some buffer time when I was symptomatic and had the FND diagnosis. I had to change how I did things in what order fairly early on. I found that getting dressed in 'outdoor' clothes when I get up to turn alarm off was a good idea and handy tip (mainly on days that I have appointments or arrangements, the rest of the time I am in PJs, and thus already 'dressed' but I tend to put on a jumper anyway. Costochondritis is more evil with a tight underwired bra! It seems to start a timer of how long I can be 'doing' stuff and even starting the timer is a spoon spent). It is more effective because am I autopiloting and still unaware that sleeping in bed has stopped now, in addition to any pain, soreness, discomfort, bruising, wall/bedframe grazes, or subluxed joints, cos hell likely will freeze over before I wake the same I did before I had the decline to the very first condition and it then being diagnosed (waking up before the alarm went off and feeling rather content and almost completely rested, wanting to be effective, productive, do something, and do it :right now! Even for what would be thought of as a joke now, anything from 4:30-7:30am!). Also, the shock of it being colder out from under my piles of blankets, regardless of season/time of year/what the heating is doing tends to be about the same if I get dressed at that time or not, and to choose otherwise means that you have to face that sensation/feeling twice, and if I was to get dressed later on then it actually took longer and made me even more late cos I've tried it. If I plan to do something (anything from staying inside all day and doing 'admin, or doing a big deal thing and showering, to meeting my support worker and leaving the flat to go do errands, or an appointment, or going to take the rubbish out, and all things in between!), I collect the items and lay them out in the order they are needed and/or packed my bag, and/or written a list of what to do/check on the day placed somewhere clear, and I do this the night before. I even have a tray for my makeup, and because I do most of the day stuff in the lounge, then I bring it in there as well. My biggest suggestions are to 1)Work out what is needed for the next day, and focus just on that in the evening. It might help to write a list of what is occuring, what you need for it, and then give everything a number order. 2)Prep all the things that are needed and put them in relevant places, keep the list. If there is an area that is the 'exit place', and utilise this space as a last port of call/last chance not to forget (preferably with a very very strong coathanger hook on the wall, or door knob, if not dedicate a table for anything you need to take out the house e.g. letters to post, bills, information for an appointment, things for an activity such as swimming etc). Lay items out in order that it is used (if with makeup, foundation first or concealer first? Also include the relevant brushes/tools used with the product). If you can at another time, set time aside to organise things that slow you down, or to put it in order where it is located. For instance, you can get a multi drawer or dividered boxes you can adapt where it is divided, and you can put the regular stuff in there and a guide like arrows or a plan etc to tell you what order things are in, plus there can be spaces for the relevant product's brush etc. 3) Allow yourselves time to do what you know you need to do excluding traveling time, and then give yourself a buffer time (if you have an ongoing 'to do' list look through and pick something if you have the time, alternatively you could always use the time to plan the next day's items, especially if you have time to both do the list and then collect any of the items that aren't needed for the day you are on). If you notice that when you have certain signs to allow T time and 30mins buffer, have other signs to allow N time and 30mins buffer, and show milder symptoms or other signs to only allow Ktime and the usual 30mins buffer, then modify things to fit. 4)Utilise the time sat down. You can bring vegetables to chop, a few bowls (for various veg and one for scraps), relevant knife/s, chopping board, and a tray to rest on (you could meal prep the week this way or even just have some veg prepped in the fridge!), you can fill in forms, write or plan letters, update medication/fill meds box, you can fold and sort laundry, etc. I can definitely understand the needing to change things, so please Larissa and Hubby (damnit brain fog and word centre ness!), feel free to contact me!
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What time of the day is it? Fabulous!
What are you growing at the moment? Grass!
What's happening with the laundry at the moment? Piles are reshaped!
Lol we all need to learn how to reframe. What I'm trying to learn at the moment is not just replacing my negative thoughts with positive thoughts, but acknowledging the negative and hard stuff honestly, grieving, and choosing realistic "light filled" perspectives. A friend cried for me on the phone yesterday, and just said that it sucks and we don't know why all this is happening, maybe we won't ever know this side of heaven. But the view over there is going to be GLORIOUS.
I wonder what you could ask for help with around the house from church members or friends? My dad absolutely refuses to ever pay someone to mow the lawn or wash the car (while other people always pay and have never done handy work in their lives) but I was thinking my carers are already doing so much for me, and dear friends want to help out but don't know how. "You know what would be a real blessing? Someone to wash the car every few months." And we might lose some pride over that but doing small things to change the physical surroundings would also help my mental health a lot. I'm asking a friend to visit and hang out, but while we hang out, do some small redecorating so my bedroom is a restful delightful space.
I recommend you google '7 cups' or '7cups' and sign up for a participater account. It can be accessed by mobile phone, or by computer, it is free to sign up etc although you can pay to access more things but don't have to. I think it would provide you with a distraction as needed, and it has lots of 'beneficial' effects (such as interactive guides on mental health topics that are very similar to some kind of therapies but simplifed, one to one AND group chats, shows your achievements, rewards kind actions, and much more). It also gives you some time to calm down as there are meditations/visualisations. Go check it out!!
we try to do redirect coping mechanism. we also do friend mode were we go into friends only so we can discuss relationship things without taking it personal.
I took 1hr to get ready when I noticed myself getting tired (this is before being signed off work and having a diagnosis of severe depression). I then had to increase it to an hour and a half after the depression diagnosis and being not at work. I then had to increase it to two hours with some buffer time when I was symptomatic and had the FND diagnosis. I had to change how I did things in what order fairly early on. I found that getting dressed in 'outdoor' clothes when I get up to turn alarm off was a good idea and handy tip (mainly on days that I have appointments or arrangements, the rest of the time I am in PJs, and thus already 'dressed' but I tend to put on a jumper anyway. Costochondritis is more evil with a tight underwired bra! It seems to start a timer of how long I can be 'doing' stuff and even starting the timer is a spoon spent). It is more effective because am I autopiloting and still unaware that sleeping in bed has stopped now, in addition to any pain, soreness, discomfort, bruising, wall/bedframe grazes, or subluxed joints, cos hell likely will freeze over before I wake the same I did before I had the decline to the very first condition and it then being diagnosed (waking up before the alarm went off and feeling rather content and almost completely rested, wanting to be effective, productive, do something, and do it :right now! Even for what would be thought of as a joke now, anything from 4:30-7:30am!). Also, the shock of it being colder out from under my piles of blankets, regardless of season/time of year/what the heating is doing tends to be about the same if I get dressed at that time or not, and to choose otherwise means that you have to face that sensation/feeling twice, and if I was to get dressed later on then it actually took longer and made me even more late cos I've tried it. If I plan to do something (anything from staying inside all day and doing 'admin, or doing a big deal thing and showering, to meeting my support worker and leaving the flat to go do errands, or an appointment, or going to take the rubbish out, and all things in between!), I collect the items and lay them out in the order they are needed and/or packed my bag, and/or written a list of what to do/check on the day placed somewhere clear, and I do this the night before. I even have a tray for my makeup, and because I do most of the day stuff in the lounge, then I bring it in there as well. My biggest suggestions are to 1)Work out what is needed for the next day, and focus just on that in the evening. It might help to write a list of what is occuring, what you need for it, and then give everything a number order.
2)Prep all the things that are needed and put them in relevant places, keep the list. If there is an area that is the 'exit place', and utilise this space as a last port of call/last chance not to forget (preferably with a very very strong coathanger hook on the wall, or door knob, if not dedicate a table for anything you need to take out the house e.g. letters to post, bills, information for an appointment, things for an activity such as swimming etc). Lay items out in order that it is used (if with makeup, foundation first or concealer first? Also include the relevant brushes/tools used with the product). If you can at another time, set time aside to organise things that slow you down, or to put it in order where it is located. For instance, you can get a multi drawer or dividered boxes you can adapt where it is divided, and you can put the regular stuff in there and a guide like arrows or a plan etc to tell you what order things are in, plus there can be spaces for the relevant product's brush etc.
3) Allow yourselves time to do what you know you need to do excluding traveling time, and then give yourself a buffer time (if you have an ongoing 'to do' list look through and pick something if you have the time, alternatively you could always use the time to plan the next day's items, especially if you have time to both do the list and then collect any of the items that aren't needed for the day you are on). If you notice that when you have certain signs to allow T time and 30mins buffer, have other signs to allow N time and 30mins buffer, and show milder symptoms or other signs to only allow Ktime and the usual 30mins buffer, then modify things to fit.
4)Utilise the time sat down. You can bring vegetables to chop, a few bowls (for various veg and one for scraps), relevant knife/s, chopping board, and a tray to rest on (you could meal prep the week this way or even just have some veg prepped in the fridge!), you can fill in forms, write or plan letters, update medication/fill meds box, you can fold and sort laundry, etc.
I can definitely understand the needing to change things, so please Larissa and Hubby (damnit brain fog and word centre ness!), feel free to contact me!
another great video, would love to know more about Darrens health. I too struggle with attending my garden
+Kevin Ratley we have a video called his and hers movement disorders. He talks more about his health on that video.
well if your garden was mine with FND i would break the garden down to manageable sections and do 1 bit a day till it was finished
+Kevin Ratley ooh that's very smart!!