heathber

Hi folks, I don't have Raynauds but I do know of it. It's surprising how many people have it once you know what to look for. I saw it a lot when I was scuba diving in cold water. So many people who would get back on the dive boat with blue/white hands and faces, even though they were otherwise warm. What I do get post stroke is the "blue foot/hand" syndrome which my physio tells me is caused by the damage to the white matter in my brain, and the loss of some autonomic functions. It does look awfully like the Raynauds I was familiar with in others when diving. and even though there's no reason for it to happen if I sit still for too long my brain seems to forget to look after the temperature and blood flow in my bad foot and hand. I find myself wearing sheepskin slippers all year, as I don;t necessarily notice that my foot has gone blue until I look at it. I have to be very careful when wearing sandles in the office (air con) in summer. I'm curious since your strokes is the Raynauds worse on your affected side?

Congratulations Tracy, there's such satisfaction in crossing things off a list.

Oh the joys of infinite regression If I'm going the reminder route I try do it when I make the list. Or I do it as I review my list in the morning. I even put a recurring appointment in my work calendar that says " go home heather - you've got yoga tonight" Who ever thought you'd need as reminder to leave the office on time. Especially as I look forward to my yoga session and Brodie usually sends me a text message mid afternoon to get a status update on how the body if feeling today so she can plan the workout.

Absolutely Tracy, With all this stuff we start with great intentions and then things start to drift off as we think it's become habit. So draw a line under it and start again. Eventually it will start to stick, in the mean time phone reminders can be really useful. We all know what to do but having someone or something to give us a little prod helps. And telling someone else seems to help with that no end. Thankfully my internal filing system seems to be pretty good still, although I still can't reliably tell myself how long any task will take, other than it'll be sure to be longer than I think. I've always been the list queen, so all the stuff gets done eventually, but I'm always running late these days.

Sue that was a large part of why I didn't bail I knew if I did it and it was a flop it was a start. Having done it once I'm much more likely to try again either with that group or a different one. As always the first step is the hardest. Mind you the tired has turned into a complete fatigue hit even after I got to bed early last night. and this morning I've told work I'm going to work from home for a few days. also I cancelled today's physiotherapy session. Sometimes you just have to admit that the body has reached a limit.

Scary, maybe it's time to limit the caffine intake.

After being reminded that I meant to try to get some more social contacts after a thread from Marcia (Newlease) reminded me. I got onto "meetup" last week and today I went to a creative craft afternoon. "Christmas card collage" It was held at an inner suburban cafe, 8 people I'd never met before sitting at a big table cutting and pasting and chatting just because. Some of the women were incredibly creative and I was much less impressed with my own efforts but I'll certainly do it again. The subject of stroke/disability never came up. I wonder if they'll be more curious next time, but right now I'm not even sure that anyone noticed that I only work one handed. I didn't say much, but they seem to be nice people, 3 others were also first timers to the group, but it didn't feel at all cliquey (is that a word?) I very nearly chickened out on going, I'm very tired today. Last night was the gym Christmas dinner, and it was a great night, at least 50% of the attendees took on the costume challenge "pop and rock stars" ( I went for easy and comfortable as Elton John). We had 2 tina turners, 2 lady Gagas, 2 Madonnas, Freddy Mercury, Pink, Elvis, Slash, "Jake" Blues, Seal, Rihanna and a few I couldn't place, we had the place to ourselves with a karaoke machine and open bar. I actually drank some beer (just one large glass, but I've generally avoided alcahol since my stroke) and didn't get home until 1am. Certainly way past my usual bedtime.

Such a relief, I am pleased for you. A long hard fight but worth the effort. Dance in your head, if your body won't co-operate.

Well done Asha, change is scary but it's not necessarily bad, and accepting that is not easy.

fingers crossed this solution works for you. I makes the 5-10 kgs extra I carry seem like nothing.

Haven't been there myself but I can imagine that "missing" feeling all too easily. I expect it will pass as your brain adjusts to the changed sensations and you heal. Overall a positive experience and outcome for you. Terrific

Hang in there. You can do this. Being a bit scared is normal. You've done all the planing you can, you have your strategies in place. now it's up to the fates and your surgeon. As you said, once it's done you will know what next. No point crossing bridges for rivers you haven't reached yet. Fingers and toes crossed ( whenever I can spare them) that you get a good result.

You just have to keep working on it. Yay for positive changes! Finger's crossed (on the had that doesn't do other things anyway) that the gain remains with you. It's amazing how little things can make a huge difference to your overall abiliities. -Heather

Jay that's not just stroke or necesarily anything to do with visual impairments. The one of those I'm most famous for happened over 10 years ago. A friend I thought I knew quite well, knocked on the door when I was not expecting to see her and I had no idea who it was. She was someone I did swim training with, and in an unepected place fully clothed with hair done and makeup on I was completely lost. Thinking back I had only seen her in bathers or tracksuit and usually with wet hair and no makeup, even though we'd been training together twice weekly for about 9 months.

Tracy that is all so hard, I do hope he takes the advice. The trouble is if he doesn't make time now he may not get a choice about it later. When you push a body too far it breaks. And I get that it's stressing him out which makes the whole thing harder to change. If he can make a small change to his daily routine he should find that the stress reduces and the energy increases but it can be so hard for him to see that until after the change starts to work. It's so easy to keep on doing what you've always done. Try to be patient and let him do this for himself. Pushing from you at the wrong time will only make it harder for him ( But I know you know this ) We are here for you even if we can't do much from this side of the world :hug:

Yes a tough day, but you came out of it smiling so give yourself a hug

2 years seems to be where they stop counting months when it comes to babies ages. That seems appropriate for strokes too. After all we effectively start a new life. But do what works for you.

What Sue said but also, I'd be writing to the management committee or if possible attend their meetings. Make sure the people doing the planning know what issues they are creating for you. You pay the fees you should have some say in what's done with them. I have joined the management committee for my building and it meant I got a real say in how our pool was remodeled. Thankfully I'm not in a wheelchair so what works for me also makes our pool more accessible for other (older) residents. We chose not to put in a lift due to the ongoing costs, and limited space in an existing pool building. The contractors have appreciated having me available to test step and handrail setups too. mostly these things are academic for them until someone with a real need comes along. Also because I mentioned it in committee meetings, we now have an automatic door on our street front and mail room, which helps people like me but also mum's with prams etc. I've found it's not that they want to be difficult it's that without a frame of reference they don't see things that we do.

There's nothing like a list for keeping you on track, and there is something about crossing things off (or checking the "done" box) that makes you feel better at the end of the day. I have been known to write down the things I've already done before the list was written so I can cross them off. There's nothing wrong with getting the easy stuff done first. Fingers crossed (metaphorically) for Adrian and the Job. I'm just sorting out the bills from my feinting episode (hospital costs are silly/scary, even in a country with universal health care), and I'm so aware of the fact that the rest of the years PT costs comes out of my pocket as there's no more Insurance money until January.

Hi Scott as David said 20:20 hind sight doesn't change where you are now, but if you can get more financial help from the people who put you in this position that will help, but as you noticed maybe the emotional cost for both you and your wife is not worth it. Best wishes for whichever path you choose. Bit of a bummer that you aren't considered a good candidate for their trial, but failing to get in because you are too strong is probably good news, they do need to be able to measure statistically significant improvements, so sometimes that happens, best of luck with the other trial. Hugs -Heather

At least you now have the knowledge of what you are facing. It often helps to have a name for the beast. Fingers crossed it remains pre-cancerous. My sister had this done a couple of years back because of chronic endometriosis, that caused issues similar to those you have described in other posts. She says it's the best thing she ever did. She put up with the condition and tried numerous fixes for over 15 years before going for the radical solution. So yes it's not good news and it is scary, but you're doing something about it, and it isn't the end of the world. Hugs -Heather

It sounds like a great garden and I'm sure it will keep you going until a new therapist can be managed. Talk to your plants and be your own therapist in the mean time. You know how to do this, you can do this. It sounds like you are making great progress.

Hi Tracy, I'm just catching up on your blog, it sounds like you've been having a very stressful time. I know it's easier to say than do but try not to beat yourself up, none of us are perfect and we all have times when everything collapses. So yesterday was bad, get up today and start again, today is a new day. Remind yourself, no one minds how many times you have to start again so long as you don't give up. Give yourself permission to be less than perfect. Love and hugs -Heather

Hi Fred, the exercise should also help bring the blood pressure down, as well as get the lymph system firing and reduce the swelling in your ankles, the less you can rely on the drugs the better. The dogs will have each other while you are out, there's no need to feel guilty about leaving them for an hour or so. The more you can keep moving the better. And if the machines give you more variety and keep it interesting then that's a bonus It sounds like a good change - Enjoy -Heather

Exactly Sue, I'm usually pretty well hydrated, but I also have naturally low blood pressure. It's been like that for years (nothing significant, just on the lower side of "normal") So I'm being a bit more aware/vigilant about the fluid intake again and hoping it was a one off.