heathber

Oh I miss the bath! One day I'll be game to try it again.

I've never done the gratitude list thing although I've been told by a few people that it's good to do.  It always makes me feel silly.  But here goes

1 I'm thankful that I have a full time job that lets me work very flexible hours, so I have enough money and can still go to therapy

2 I'm thankful that today my leg muscles ache, it means I did good at training yesterday

3 I'm thankful for the Epworth Hospital Return to running program and the spacticity clinic attached to it.

4 I'm thankful that I don't have CPS

5 I'm thankful that the next DSAMP surf day is on Saturday and I'll be able to go play in the shore break

DSAMP is the local branch of the Disabled Surfers Association.  They have special days where they make surfing possible for anyone with any sort of disability.  It's so good to see the joy of people who can't walk or sit unaided surfing the shore break in a beanbag on a giant surf board.

Hi Sarah, I just want to say do not feel guilty about your neighbour, you are allowed to put yourself first, and she is not your responsibility.  It sounds like you are going to need to be assertive with this lady and explain that you are unable to help her because you need that non caregiver time, your time is precious and even her little jobs while you are out create a burden you don't have the energy for.  Maybe emphasize to her that for every minute you are away you have to pay someone else to look after your husband.  (Even if you do sometimes leave him alone, the principle still applies) You may need to find a way to talk to her family or find out who her friends in the village are and remind them that she needs more help than she is getting.

Have a wonderful holiday

-Heather

It's this old stuff about you don't see the wood because of the trees.  As carer or survivor, you have to work on each "step" and not get obsessed with the big final goal. So long as you have worked out what today's tasks are and the order they should be done to get to the final aim, you can just do each task in it's own time and the final aim will be reached.  I'm not saying don't take time to stop and admire the view along the way (quite the opposite, by eating your elephant one bite at a time and taking the time to appreciate and enjoy each bite, you eat your elephant and you get to the end still sane.)  I have huge respect for those of you on the other side of the fence to me, and I do sometimes wonder how I would be managing this thing if I'd lost more than I have, and was fully dependent on a caregiver.

Hugs

-Heather

We have certainly all been there.  My family now does a KK gift swap so we receive and give one present only, Although if someone wants to do more we don't discourage them.  Also our KK gift value is unspecified, so you spend only as much or as little as you wish to. Everyone is asked to nominate a list of 4- 5 things they would like, and again you can use the list items or whatever strikes you as something that person would like. We also often "give" tasks or jobs that we know the receiver will have trouble doing for themselves.  So my nephew this year got a service for his electric guitar, because one of his brother's in law has a business that does this and Lew can't afford to get it done himself at the moment, so the gift includes both the parts and the labour.  Last year I received "clean balcony windows", which was a real godsend as there's construction work happening next door, and the reality is it's a job that completely wears me out.  The year before I received a catalogue of my DVD collection. So use your imagination and you'll find there are gifts you can give that don't cost you much more than time and energy, but that make a real difference to the people they are given to.

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.

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.