heathber

Great news and hugs for having to manage full PPE, hopefully not for too long

Oh Nancy OUCH, and phooey, glad the team will be around to help you through the surgery and recovery period. Hope all goes well and you get back to work ASAP, I so understand the importance of it, other than the paycheck which I must admit also helps a lot.

Sue at the moment my world is greens blues and a splash of yellows. I need to get back to the paints. They live at the holiday house and I wasn't allowed to go there for most of last year. And then when I did go I was so busy the paints didn't come out of storage. I did start on a new small piecework project in red and green and cream. Looking forward to finishing that on my next visit. Green and blue are my happy calm colours, yellow is that splash of sunshine that makes the other colours pop. Life down here is slowly opening up again, this week has been back to hospital out patients and face to face gym. Of course as you say that could go backward at any moment if the virus gets loose again. So one day at a time, put your happy face on (fake it 'til you make it if necessary) and before we know it another year will pass. Hugs from a distance and best wishes for your world to get back to normal as soon as possible. -Heather

Another route those with CPS might want to investigate is mirror pain therapy. As I said before I'm lucky and don't have it but to some extent CPS is "learned" and hence may be able to be unlearned. I'm not saying it's easy or practical in all situations but it may be worth investigation. My Neoro Physio is also a pain specialist. He said to me when I first started seeing him that even though the brain is damaged the nerves are not so they keep sending signals and the brain has to "put" them somewhere, so when you get an odd sensation as I manipulate your arm or leg, look mentally at the sensation and look physically at what I'm doing and know it's safe, this will help the brain to not connect the sensation to the pain center, and if you can't keep up or it starts to feel like pain let me know. I still have to occasionally let him know that the arm/hand is not happy, and when that happens he adjusts what he's doing.

So true Janelle, and having to justify to my mother the things I had put in the need column that she saw as a desire, was actually a useful exercise, although also emotionally difficult.

yep jigsaw puzzles are also a great cognitive workout too, and if you do real ones they also work on fine motor skills that tend to get forgotten when you've been working on gross motor skills. Another good one for winter is the adult colouring books. Recovery never stops so long as you are challenging yourself

Oh yes the fun of working out what is a want and what is a need. That was one of the hardest parts of setting up the budget. And yes Sue some indulgences are "needs" it about making a decision with your eyes open and the long term in mind. A meal out or takeaway may be a need sometimes, especially at the end of a working week. But if you know how much "space" there is you can balance how often you do something like that. This applies to diets as much as it does to financial budgets And Kelli we are all masters of "do as I say not as I do!"

Ouch sorry to hear it's come to that. But as the strokee I've no idea how you go about doing it. ((HUGS)) -Heather

Hi Kellie, I get it! I've always made a decent salary and had plenty of funds for holidays etc. when I wanted. But within 2 years of my stroke I discovered I was living outside my means for the first time in my life. It was a shock. During that time I was getting 75% of my pre stroke income via disability insurance. It wasn't really that much less but it was enough less that I couldn't do it in my head any more (or was that the stroke 🙂) My Mum bailed me out with a lump sum payment, after she got me to do a written budget and an assessment of all the things I was spending money on and deciding what I was willing/able to compromise on. Like you I was living at home at the time and the house bills were being paid by my parents. Since then I haven't had to ask her for help financially, I even managed the cut in salary I had to take a couple of years later because I could no longer do my technical job I have also moved out on my own again. Enough about me but yes I feel you and especially the not wanting to lean on your parents any more than absolutely necessary. We know they will give us what we need regardless of what it means for their own quality of life, and we don't want them making sacrifices for us now we are grown up and supposed to be independent. I do recommend doing a formal budget of what your incoming and outgoings are and what of your spending is realistically changeable on a long term basis. Only make decisions about selling your place, accessing your savings, and/or moving once you know where you stand. Write your backup plans down with their pros and cons and then make a decision and get on with doing it. I find the act of writing it all down gets it out of your head and stops you worrying at it. Good luck and hugs -Heather

Hi Sue, so nice to hear that there is a special relationship in your life again. All fingers and toes crossed for a good year for everyone this year.

Hi Pam you should be able to reply or even do a blog from your phone. I use the phone for Strokenet when I'm travelling, but it is quite fiddly to do and the text is very small. I hope you're getting along OK in the current Covid mess, not easy living in a nursing home at the best of times. ((HUGS))

Hi Boop, lots of discussion of CPS on the site, it's actually quite common. I don't know why a search for "CPS" returns 0 results. Try Searching for "central pain" and make sure you use the all my words option. Sorry but I don't have any personal experience of it. I have a great neuro physio who has worked hard to prevent cross wiring and pain patterns setting up. My understanding is it can be very hard to do much about once it starts. Your best bet is probably a specialist pain clinic.

Happy new year Kev the French sounds like fun, good luck. Learning a language is also supposed to help the brain create new axions which you'll need for movement goals as well. Fingers crossed for a better year in 2021 for everyone and hopefully the pandemic situation improves quicker than expected.

Sue sometimes challenging yourself is working on maintaining what you have. So long as you are working at the edge of your ability you are going to progress, although it gets very disheartening when you feel like nothing is improving. I have to keep telling myself, you try nothing you get nothing. But some days you grab the bull by the horns and you get brave. I started a new patchwork piecing project yesterday. I was sensible and went for 4 inch blocks, where I would have done 2 inch pre stoke, and doing the cuts was a little terrifying. But it looks like it's going to work although the accumulated error factor of my uneven seams is going to make it "interesting"

Looks like no fun, I'm a grinder too although I stopped using a night guard a couple of years ago, as it didn't really work for me. Its seems odd that they didn't want you to wear it when it's purpose is to reduce the motion of the joint they have just operated on. Sometimes I wonder about doctors, they don't seem to be very good at cause and effect sometimes (like telling someone without use of one hand to keep stitches on the "good" hand dry for 2 weeks, I laughed in his face) I do hope the healing goes well for you and the balance problems at least return to pre surgery condition quickly. ((HUGS)) -Heather

Look for refined coconut oil Dad says it's the same as Copha that we used for chocolate crackles and white christmas when I was a kid (did you have them in the UK and US?) the extra refining removes most of the coconut flavour. So long as your recipe uses melted coconut oil it should work. it's too solid at room temperature to be worked like butter. Dad made a very nice vegan christmas pudding for the vegans at our table this year. It used aquafarba and refined coconut oil to replace egg and butter. Not the same texture as "our" pudding, but if you hadn't been told you wouldn't have known. He found the recipe on the web

Christmas "mince" pies are fruit mince not healthy at all. I love them and my Dad makes great ones, often as tarts not pies. fruit mince is dried fruit and grated apple cooked with butter and sugar and spices then soaked in brandy and left for 2 months to "mature". When recooked in the pie shells it becomes sticky gooey magic toffee. I have an appointment with Dad for Friday to do the baking part. We'll eat them at all Christmas and new year get togethers, so many are "needed" Kev yours look great! It's nice that you have reinstated the tradition, I've been looking at coconut oil sweet biscuit recipes too, nice to know they work.

Very scary Janelle, it is understandable that this sort of occurrence will have that effect on you. There's very little you can do about it other than as you did.

exactly perfect mental image

Yep there's something about giving in to the tears and just letting them fall that helps. Combining them with an exercise that doesn't need too much concentration is a great idea. I admit I usually just recline my chair,turn the music up loud and make sure I have a box of tissues handy. It doesn't last too long that way. If I'm lucky the cat will sit with me.

Will occasionally things do get to you that are actually fine most of the time. Knowing why the tears come is a big help in making them go away again for a while. At least that's what I find. Medication for it is warranted if/when it's getting in the way of your life. If it means you aren't getting out of bed or that you aren't eating properly it's time to ask for help. But if it's a few days of anger and frustration and most of the time you are fine then that's life, stroke or no stroke, and medication probably isn't needed, but it's a personal choice too. Feelings are all valid and need to be acknowledged. what you do after that is up to you. Sometimes you can choose to wallow, but do try not let that be the default position, as you say there are still 10,000 things you can do and of the 1,000 you can't maybe there's a way to do them differently that will also make you feel better. Like your charity giving, just because you always gave to X doesn't mean you have to keep giving there, if you think someone else could use your help more or better.

oh yes doesn't the "performance" degrade when things start to tire. My family know when I've pushed too hard because they see my walking quality obviously degrade. I notice it because my left foot doesn't clear the ground so well, and I can hear myself walk. (flappy foot). But you have to push those limits if you are going to see and keep gains you have made.

yes even when you outsource the tricky bits there is a lot of work in something like that. Glad you celebrated and had fun exhaustion is sometimes worth it.

Hang in there, You do what you can just know we care about you too.

Kev, that headiness as you call it drains stamina in a big way. Brain rewiring takes large chunks of energy to do. But it's worth it. That new tool box looks magnificent.