heathber

Spot on Sue, we will all keep muddling through, one foot in front of the other

No need to apologise Kelli, we all have our challenges, the thing is to live our own best lives despite them. We worked it out and you shared both are good things! -Heather

Thanks Sue yes it makes a huge difference having someone with me at the market. It's not that I can't do it, it's that I pay for it after in other ways

Hi All I haven't blogged for ages, thought it was time for a quick update. I've been self funded for all my care and therapy since my stroke but with the shutdowns here in early 2020 I was forced into the realisation that I am not as independent as I thought I was. So I finally applied for government assistance with health, self care and therapy costs through our NDIS (National Disability Insurance Scheme). It's been a roller coaster over the last 14 months getting all the information together and the medical assessments done and then fighting with the bureaucrats who control the system about what supports I need and what they will fund (or more accurately what they won't fund.) and then trying to organise new care workers during a pandemic (which thankfully here is largely not an issue). Anyway yesterday I had my first Saturday cooking and market assistance day. We had fun, cooked zucchini slice, went to the fresh food market, planted a new cactus into a little pot (my office plants did not survive the over 12 months with no one in the office) I was back in the office for the first time since Feb 2020 last Thursday, but that's another story. Skye my new home help, comes twice a week, Tuesdays she comes and cleans the apartment and helps me with the tidying up chores that the "normal" cleaners just don't do, then on the weekend we do the "fun" stuff and get me setup with food for the rest of the week (I'll cook the curry myself this afternoon, we bought the bits for it but Skye had to leave for her other job and I was running out of steam.) I also now have hydrotherapy in my apartment complex pool every 2 weeks through the scheme, and they give me a rebate for some of the costs of my personal trainers, and specialist physiotherapy treatments. My Support coordinator is also looking into getting me to some disability snorkelling sessions if we can organise it before the water gets too cold. So I'm in a pretty good place (mentally and physically) at the moment although the ongoing fatigue sucks pretty bad some days. -Heather

Hi Kelli, it's a bit scrambled but I think I follow what happened. Sounds like you had one of those moments where you hit the wall hard and people around you, who hadn't realised there is a wall, were surprised and got hit by the shrapnel. I totally get the acceptance thing, so many people think to accept is to give in, it isn't its a realisation that you are at peace with where you are and how you got there, it doesn't mean you stop working for more or better, but it does mean you stop beating yourself up. The beach or the bush is my Zen/recharge space, glad you got to the beach to wind down. HUGS -Heather

We are all a work in progress right up to the end, no matter how unexpected or expected that end. But there is no harm in being prepared. If you don't find time to talk to your other half at least make a file of notes for her with all the relevant details like account and policy numbers and let her know where to find it. Fingers crossed she doesn't need it for a long time yet.

LG cats can be great company and very affectionate if given the chance, yes right now there are too many of them, but could you maybe let one of them get close and be your special companion, until you feel ready to get Roscoe, given they are already there and needing your care anyway. Make the best of what is in front of you so to speak. Either way hugs and stay as positive as you can. -Heather

Yep thankfully I never got the semi regular migraines my Mum and sister lived with, and that they now control with the new daily preventative medications, mine where only a couple of times a year but it would wipe me out for a week. Current problems are not fun but in some ways easier to deal with (more predictable for a start)

I have no trouble believing a smell can make you feel sick, or that brain insult can "create" smells. Pre stroke I used to get migraines. Not just the bad headache lots of people think is a migraine. One of the ways to know a true migraine is that one or more of your main senses becomes hyper sensitive, that combined with gut hypostasis which really sucks and means oral medications don't work. The most common migraine hyper sensitivity is lights and noise, but I used to get taste and smell migraine. Thankfully my stroke seems to have "cured" my migraines, although it's not a cure I'd recommend I'll take it as a bonus 🙂

smells I haven't had, but I certainly know those itches. The weirdest ones are when the bone itches not the skin and you really can't scratch it! Will, fingers crossed the itches mean that a nerve that hasn't been communicating with the brain has started to and the brain is not sure where to file the signal/sensation so it could be a sign of healing, the trouble is without knowing the source of the sensation it's hard for you to direct your brain on how to file it.

Fingers and toes crossed it ends up weakening or bypasses you, at least you'll get some rain (probably). Hang in there and let us know once you're safe.

Yes Tracy this stroke thing is one place where being stubborn works for us, not against us.

Sometimes it's hard to get back to the good eating habit, I've been on a sugar binge for the last month (at least) maybe that's why my sleep has been so bad. "Everything's connected". The problem with sugar, for me at least, is that it creeps in slowly and I don't notice how much of it I'm having until the habit is back almost to full strength and I have to start at the beginning to break the cycle. One of the big losses with Covid for me was the nutritionist who was keeping me on track with the food stuff.

Hi Tracy make sure you look for Inulin not insulin 😜 Results could be a little different if you mix them up. https://www.simplysupplements.co.uk/healthylife/sleep-disorders/inulin-for-sleep-does-it-really-help https://www.sciencedaily.com/releases/2020/03/200303155658.htm

More Hugs for Tracy, I'm so glad that writing this down helped a bit. Sometimes you just need to put what you are feeling into words and that gets enough of it out of your head that you can start to process things again. I too am having issues with sleep at the moment, I'm dreading the daylight saving time change that will happen here next weekend. I feel wary about offering suggestions here given what you said above and I so get that "if you just did x" everything would be fine thing. I still get that from my sister when she thinks I'm not trying enough to use my bad arm. But one thing you might want to investigate if you haven't already and it's not a miracle cure, but I have found it helpful is taking inulin (prebiotic fibre powder) about an hour before going to bed. I'm finding it makes the sleep I do get much more restful, which means I wake up more awake if you know what I mean. Super ((HUGS)) and please feel free to ignore this comment if it hits a sore spot. I do not want to make life or your self esteem any harder.

Just to confirm what's already been said we are here for you LG for as long as you need us to be. Grief and grieving are personal journeys and not everyone does it the same way. Remember there is no correct way to do this, other than try not to lose yourself in the grief to the extent that your health suffers. Much as you feel that it shouldn't matter you do still need to eat and sleep and keep moving in at least a minimal way. One day at a time or one hour or minute at a time is a good way to get started again. I know this will sound trivial to you, but most of us (both survivors and carers) have had to grieve for ourselves and our lost lives before we could pick ourselves up and get on with the new/different life that exists after this. I wish I could make this hard time pass easier for you, but it is what it is and it takes as long as it takes, it gets easier with time, it doesn't go away, it just hurts a little less often. Have you read the analogy of the ball in the box ? https://psychcentral.com/blog/coping-with-grief-the-ball-the-box#1 -Heather

I'm only an honorary member myself, I only have 1 cat but I would get a second in a heartbeat, if I thought I could manage it.

Fingers crossed Sue stay safe, I have Sydney based work colleagues working with SES on the flood front line. I'd rather you didn't meet them, even though they are great blokes.

So sorry to hear that Lucy has crossed the rainbow bridge. Hugs for Riley and the rest of you. Heather

Oh LG So sorry to hear this, although in some ways him going is a release for all concerned. We are still here if you need help to process this next step in your life. ((HUGS)) -Heather

Nice to hear that you are starting to come out the other end of this. I do hope a trip to NZ can be arranged soonish. Hugs to Tippy and I hope she continues to bring you joy for a long time. Good luck and congrats on Chording on the Dulcimer.

Spot on Paul, especially about Canberra. The only time it's worth going there is for the Easter National Folk Festival and if you're there you can ignore the rest of the place 🙂 Living very isolated lives does put major strain on a relationship. Try to be patient with each other and with yourself.

There's a Red Hats Convention in Perth that I'm booked into, 5 days of refusing to grow up with other people who are like minded 🙂 The plan is to hire a car afterwards and head down to Margaret River for a week or so (I've never been there). I might be able to make a "side visit" up to your neck of the woods, and certainly will if I get stuck by a closed border or similar. I need to talk to my Support Coordinator about maybe getting a worker to come with me and do the driving and bag carrying etc.

A friend sent me this the other day. it's very interesting especially about the link between sleep and putting down memory. You need to sort of fast forward through the intro bit with all the ads. https://play.acast.com/s/the-osher-gunsberg-podcast/376-drcarmelharrington