heathber

Pretty much Janelle. the lights are designed to emit full daylight spectrum unlike most artificial light. The idea is you sit under them for a couple of hours a day, but like daylight you need to be careful of UV etc.

Hugs to you both, I've had a very down week and I need to stop looking at the news! I'm trying not to have a pity party for one here too. But we heard today that the possible reduction of restrictions that was planned for the 19th is basically cancelled, although they are saying some easing of restrictions should still be possible. The dashing of hopes is so much harder than I expected it to be. I've been trying to be realistic but given how I feel I must of pinned more on next weekend that I thought I had. I keep telling myself I've been through this before, I did it after the stroke, I can do it again. I think that the difference is that after my stroke my recovery and progress to "freedom" was basically under my control, even though I thought the OTs were being way too strict and risk adverse most of the time. This time my "freedom" mostly depends on the actions of others who show time and again that they "don't care" or "can't be bothered". As some one put it on Facebook the other day. Worst group project partners ever. Sue if we get out of this sane it will be a miracle. Fingers crossed for all. I'm trying to hang in there. All the support from here certainly helps.

Hi LG a lot of us have self therapy setups. And yes everyday living is therapy in itself. I suggest you check out Kev's blog for the benefits of self therapy on a remote farm. So long as you have access to medical care when needed I think the move makes sense. Can you research and send info to new doctors before you move? Both of you have some complex medical needs so it would be good to have at least the basics covered before you go if possible. I don't know about the USA but here with Covid we can now access 95% of our medical people through telehealth. If that is the case you may even be able to have your first appointments before you physically move. But I'm all for a change is a good as a holiday, and a new environment gives you both a chance to start from scratch. new house = new routines, start as you mean to go on and all that. The question is will the added stress of the move be too much for either of you at the moment? Are there support systems either of you rely on now that may not be available near the new house? Given the move was partially planned before the stroke and things are now fairly stable moving on with the plan is a good idea. Hugs -Heather

Hang in there LG. HUGS, and try not to dwell on the stuff that brings you down

One step at a time, that is good news. Never say no to a bit more therapy. Especially if it takes you towards a freedom goal.

That all sounds great Kev and yes when you start to use muscles that have been on strike for a while they will complain about it. The key thing is that you are able to pull up relatively quickly, and are not creating problems for the next day or days! Feels great when that happens 🙂 And those spuds look so good.

Hi Janelle, DST is good in the south, especially for TAS and VIC, we are far enough south that if we don't do it in Summer the sun is up at 4am and goes down at 8pm. So it's easier to pull everyone forward by that hour so we get light time after work when the weather is nice. QLD don't do it either. It used to be that DST only started at the end of October. But then someone decided that the start of October was "better" I don't understand why so the sun now comes up at 7am and goes down at 6pm but as the days get longer that will change and be very nice for summer. It's just these first few days/weeks where it's hard, as I try to readjust my body clock to new clock time. Especially as most of the external time triggers don't exist when you are working from home. Unfortunately a covidiot from the last big cluster in the suburbs has now taken the virus into a country town and infected 3 people by eating in a restaurant. He was allowed to be in the region for work , but was not supposed to be mixing with locals. So now of course our promised let out date is under question, and they are talking about keeping the 5km rule to keep us out of regional areas, even if they do relax some of the local restrictions. If I ever meet that man I'm going to do something really nasty to him. I know he probably didn't know he was infectious, but my patience is running out.

That is a blissed out cat. But rub his tummy only if you're quick. Why do cats offer up that sort of temptation, they know we can't resist. Or is that the point 🙂

Marcia none of us are perfect and there will always be good days and bad days. We've just moved to daylight saving time here and as usual I'm not adjusting well to it. Getting up "an hour earlier" sucks and I feel like I get less sunlight for the first month of it. I think they move the clocks too early in the season. Spring has barely started, so I feel like I'm back in the depths of winter. All my energy has gone. But maybe that's also partly due to lockdown this year. I'm beginning to feel like they'll never let us out. I want to go see my Mum, but she's in the safe zone and I'm in the hotspot so it's not allowed.

long posts don't bother me. But you could try blogs rather than the forums if you feel you ramble on too much.

Hi Marcia nice to hear from you again. Sorry to hear you've acquired more metal. That motor planning stuff sounds so frustrating. I could not cope if the floor was "out of bounds". Don't worry about long posts. Heather

oh LG HUGS There are no words.

Hi LG stroke is one of those conditions that has a tendency to send people you thought you could rely on running for the hills as if it was contagious. So we all understand your reaction to that phrase if not your specific circumstances. "we got you" is not a phrase used lightly here. Please vent if it will help. we have all done it, and this is a safe space to vent without hurting the people close to us. Just be aware that we will probably reply with advice to a vent just as we do to other posts. We care and and feel the pain behind it and have usually been there got the t-shirt. So please don't be offended when we reply to a vent with advice. If all you want to do is get it off your chest, put that in the post somewhere, otherwise we will try to help you fix it. Often when we vent we know what we should do and saying it "out loud" makes it easier to take the necessary step. In other words vent away it helps! Hugs -Heather

Looks good Kev, MJ is not an option here in Aus yet, but so far I don't have defecits of the sort that it would help with so not that bothered for myself. Although I do think it should be an option.

Hi LG, Whether you use your name or not is entirely up to you, this is the internet, so if you want to stay behind a use name that is also fine. It sounds like life has kicked you in the teeth a few times so do what is right for you, when its right for you. Many of us also know about QUACKS and have met our share of them. We are dealing with a condition where the science is changing and even the good ones don't always keep up with what the current learning is. Add to that many people desperate to get back what they have lost and we are very vulnerable too. If you have a look through this site you'll find quite a few references to "out there" treatments and therapies that people have considered or tried. One thing you need to know, and I'm not excusing his behaviour, just explaining. The more tired we are the less well our brains work and the more we regress. So morning (rested) behaviour and ability will almost always be better than evening (tired) behaviour and ability. Also as our brains have to work harder to do everything so we tire very easily and from doing what used to be simple things. Early on even being awake is tiring. What he is doing is sounding more and more like stroke deficit rather than normal emotion. I think the suggestion of finding a Neurophych to do an assessment and help devise coping mechanisms and/or therapy/training is probably urgent. Even though you don't like quacks, this particular type of quack can be very helpful. Note that a Neuropsychiatrist is as different from a psychiatrist as a psychiatrist is from a psychologist. Memory issues are quite common after stroke regardless of age, but there is also a stroke induced dementia that might be something you need to talk to the Doc about, Although if he's feeling/acting so belligerent it will be hard to tell what is stroke and what is something else. Especially with the complications of his other health issues. Do you have a way to assess his pain levels? Stroke can do some nasty things and neuropathic pain is likely to make even the nicest person snap. Enough about him back to you. You story pains me so much I just want to reach across the world and hug you. This is so hard, and really you are doing an amazing job, even if, right now, he can't/won't see that. I do hope one of the caregivers sees this thread and joins in soon. From memory a few of the regular care posters have dealt with this sort of behaviour and may be able to give you more relevant ideas than me. Maybe a holiday for you, while he goes to a facility for a month or so isn't such a bad idea. I know you are scared that given the opportunity you will run and not come back. But you can't keep going with this level of violence both physical and verbal. Please at least look into an outside carer coming into your house even if it's just for a couple of afternoons a week so that you can go out. Fingers and toes crossed you find a way through this mess. Keep us posted -Heather

I don't post many new topics these days. But I do logon regularly and respond to others. But Sue I will think about a new blog entry, as I haven't done that in ages

Hi LG, So glad to hear that things are improving for you both. This thing is hard, but you are now heading in the right direction. Drop in any time you feel the need for support. Janelle (GreenQueen) and I are in Australia so we often "cover the night shift" and are available at weird times. You are not alone in this struggle, reach out about any little things or big things. And remember there will be steps forward and steps back, so try not to be too discouraged when things go the "wrong way". It's about picking yourself up each morning and deciding to continue, I do hope both you and your lover are able to make that mental shift. We can't go backwards to what was so we have to go forward, and we might as well make it as pleasant as we can. Chose to be happy All the best -Heather

That is all you can do! I'm sending virtual hugs to you both. Losing a family member always hurts. Please reassure Connor that it is OK to feel like he does right now. (((HUGS))) Heather

Hi LG, I hope it's OK to shorten your name. It sounds like you are on the rough road. I'm a strokee not a care giver So I'm not sure if my point of view is going to help you, but I'm going to try. I suspect a lot of the neediness and violence is a function of frustration on his part. Neither of you got the care you needed at the start of this journey. A lot of effective stroke recovery is about early intervention and persistence. The trick now is going to be to draw a line in the sand and try to find a way to start again. One thing you will need to discuss with him is that violence is not OK no matter how much he hates his current life and situation. But also be aware that sometimes brain damage affects our control over our emotions and reactions as much as it affects our control over our bodies. He can relearn like he relearned to walk, but it will take time and work on both your parts. You should probably get both of you into counseling as soon as possible, and it may also help to talk to your doctor about depression medication for you both. My reaction to the stroke was very much a determination to be independent again. So I was very stubborn and pushed people away while he seems to be going the other way. It will be hard but you might need to do the tough love thing and make him look after himself more. The more we try to do for ourselves the more we can do, I certainly did and still do make amazing messes when things go wrong, a full yoghurt tub on the kitchen floor is not unheard of when trying to remove a foil seal. But I have learned to laugh (better than crying) rather than react with violence and my family are very good at the let her do it herself unless/until she asks for help no matter how much they hate to watch me struggle with simple things like buttering bread. One of the big things you will hear here is "Care for the carer comes first" You have to take more time for yourself and your health. The sooner you can arrange for an outside support person to help you both, the sooner your relationship can start to go back to lovers and mutual care. Part of the problem is probably that the power balance in your relationship has been thrown off. He feels lost, dependent and helpless, and is probably scared that you will leave. So he reacts irrationally and tries to push you away. I will say that it is OK to leave if that is what you really want/need to do. However you came here looking for help so I'm guessing you actually want to stay. However he may never be the person he was before the stroke. and your relationship may never get back to what it was. This is a hard and long road, if you chose to walk it do it with your eyes open. One other thing we often say here is that life post stroke is different to life pre stroke for the whole family, not just the strokee. Not necessarily worse or better but certainly different. HUGS -Heather

Sounds like a great trip. will be worth the "cost"

Absolutely Jana, Statistically x% of people will die crossing the road, but we don't stop crossing roads. Anxiety is hard to shake off. Some of your anxiety could be due to the rewiring of your meat computer, some people find knowing that helps. Many find the serenity prayer helpful. I tend towards mindfulness and the practice of taking the debilitating thought when it occurs, looking at it logically and thoroughly and then putting it on the "top back closet shelf " This gets easier to do with practice and with knowing I'm doing all the things I can to live a full and healthy life, and worrying without action only slows you down. So choose what you are going to "worry" about take the action needed to reduce the risks where appropriate. But don't wrap yourself in cotton wool either, you don't know where your limits are unless you push against them occasionally. You have young children, learn from them. You've got this! keep at it -Heather

Sounds like you are getting to know your spoon count and using them effectively. Looks like a big job!

Sometimes things do just work out, I do hope this is one of them.

Looks good. A lot of us need a haircut at the moment, but in the mean time your headband works to keep it out of your eyes so you can work. And if you pull it down it acts as a mask if needed 🙂

I do hope no one is offended by that cartoon, but it does help you keep calm when you pass them in the street. Like the public speaking thing of imagine your audience is naked, to decrease your anxiety.