heathber

Yep you have to connect well with all your therapists. 

Some apprehension is fine so long as you don't let it stop you from doing what you need to do.  Recognising that there are some risks in life, means you are human.  Taking risks is fine and necessary for your recovery, so long as you know when you are doing it and take the necessary steps to mitigate risk where it's sensible too.  But life with no risks is not living.

Good on you.

-Heather

Sounds good, Hang in there.  Life is full of positive things.  There is no reason to be ashamed of having a stroke.  Stroke can happen to anyone at any time.  Don't let them convince you it was your fault and and therefore something you did wrong.  Even if you didn't get all the risks out of your life.  Life is for living and sometimes crap just happens.

Love and hugs

-Heather

H Pam, I hope you find a less stressful balance with your living arrangement soon.  As Sue said you need to learn to pick your battles.  You don't want to be a push over, there's as much stress in feeling bullied as there is in fighting the wrong battles.  Fighting  a loosing battle saps you energy, so try to save it for the ones you have a chance of winning. Unfortunately in these situations common sense is so uncommon, and some people enjoy the power trip. They love their petty rules, but there's a reason for some of them, so try to be reasonable and compromise occasionally.  But you are a person not a machine and your emotional needs should be as important as your physical needs, although they seem to get lost when the bureaucracy takes over.

Hugs

-Heather

It sounds very like the food at the rehab clinic I was in after my stroke.  Lots of us would get together in groups and order home delivery to get something more edible.  On my first day leave my friends took me to the supermarket and I went nuts at the deli.  Cheese, olives, stuffed peppers, salami.  Anything with taste and texture.  We had a great picnic but I couldn't take stuff back with me as it would have needed to be refrigerated.  My life saver then was that I had been loosing weight so the nutritionists was trying to build me up so they added mixed nuts to my lunch order each day.  No wonder you loose weight when they feed you crap!

Hey Pam, Hang in there and don't let them bully you because you make them work for their money.  Every so often they need to be reminded that you are a human being and should be treated as one.

I'm a network engineer and we often say (only half joking) that the network would run a lot better without all those pesky users.  I'm sure the same applies to nursing homes.

Keep being the squeaky wheel, and live your own life as much as you are able.

Hugs

-Heather

You make me really appreciate that my Dad is wiling and able to keep the wood box near the house at Spring Hill supplied for me.  Especially as he moved out of that house and into town because the wood chopping was getting too hard. I guess it's a price he's willing to pay to have me come visit them relatively often.  And 1 person a couple of nights a month is different to 2 people full time.

Sounds like you are on the right path. Congratulations on making the mental adjustment.  I hope you can reduce your meds, just be careful about making changes without discussing with the doctor.

Hi Mitch I'm doing the hanging rock climb on Sunday 20th with a couple of friends, it's my last test before I leave.  We won't be going fast. You are welcome to come with us if you think your knees are up to it.  No pressure it's just a chance to try it with others around so we can send for the cavalry if needed.

Your garden should be looking fabulous now that spring has finally hit.

-Heather

Hi Debbie,  I'm sure the early pool work was one of the main reasons I'm walking as well now as I am.  I was a water baby before the stroke, and my pool instructors had me swimming again in a few weeks( at the rehab hostpital).  I could swim (one handed) long before I was walking again.  Although the pool walking and pool step work was vital for the leg strength and control.

I haven't been in the water this year.  The effort required to get out of wet bathers and shower puts me off.  There's a pool in the complex I live in so there's no reason not to swim or continue with the pool work on my own, but somehow it just doesn't happen.

I hope Bruce can keep it up.

-Heather

yep I was at the Melbourne Campus.  It was on the day we had both a tram and taxi driver's strike.  So there were 3 of us that missed the start time and they had to give the students extra time because of the late start.  On the plus side.  It meant I chose to walk home (easier than trying to find a taxi) so that made it easy to meet the walking goal for the day. 

That sounds like a very sucessful birthing and mothering.  Enjoy them. 

They'll be a handful once the eyes open and they start getting bolder.

Contacting the architcect sounds like a plan, notthing ventured nothing gained.  If he says no it only cost you sone time and a stamp.

Do keep your heart.   I'd miss you if you gave it up.

The sleep sounds brilliant.  Is it giving you more energy?

-Heather

Yep asking for help can be hard to do but as Ethyl said many people are happy to help if something is important to you.  Don't be shy about asking, or about using bribes on occassion (especially with family)  When I need help from my nephews I often give them fuel money which I know will be enough to cover them for the trip to come help me and  some left over to go out with their mates later.  they are studying so have time but no spare funds.

And if your daughters aren't too far away, use the guilt trip now and again (as in remind them that you did it for them when they couldn't drive themselves, and now the boot is on the other foot.) 

I also would like to take a break from my body...... But they only time that's going to happen is when I'm dead.....and I sure as hell ain't ready for that!!!!!?

Absolutely!!  I'm feeling pretty positive at the moment.  But there are always days when nothing goes right and I drop or break things where I would love a do over, not that I'd know what to change to stop my stroke as we never did work out why.

Oh yes hate that feeling and the usual end result.  So embarrassing.  When you can't move fast anymore it's always 3 steps more than you can wait for.  And the control is not what it once was and your muscles/brain can only do one thing at a time.  You can hold on or you can move, but doing both is not possible.

So she thinks it a waste of time.  Everyone has different needs and enjoyments.  If it's important to you don't let her opinion change your mind.  Keep on enjoying your life.

the Url was https://strokefoundation.com.au/strokeconnect  but it's no longer working.  I'll need to let Diane know, they said they'd leave it up as reference, but I'm not surprised that it's gone.

Hi Scottm, better to let the mask slip sometimes, than to let the pressure of wearing it push you over the edge.  If you're hiding things, they'll eventually get away from you and then it'll hurt people more than you being honest up front. You don't need the emotional pressure of keeping things to yourself.  Find someone you can share this with before you explode or collapse from trying too hard.  Many people do not expect you to be perfect, and you should not expect that of yourself either.  Sure do what you can do and don't let this thing stop you enjoying what you can enjoy.  cake all over your chin could be a good ice breaker for explaining to someone about "invisible" injuries, and how hard some of the "simple" things are now.  Not everyone gets it but don't try living up to unrealistic standards, especially ones you are putting on yourself.

You don't need sympathy, or fussing over but you do need people to acknowledge that sometimes this thing sucks.

-Heather

Hi Sue there's no plan to shut down the Stroke Connect website (so far anyway) it's all still there just locked to updates.

Nancy, We all are who we are. And beating yourself up over what you had to do is not going to make it easier or better for either of you.  You did not fail, you did what you could do.  And no one can ask for more.  You've taken the big step and made the hard decision. Now you have to accept that life is what happens while you're making other plans.  The guilt will cripple you if you let it, and I doubt that Dan would want that if he could fully understand what's happening.  Take a deep breath and keep on trucking. 

Hugs

-Heather

Hi Mitch I know it's possible and I've met some people who've had it happen.  The brain mis-connects some of the nerve impulses it's now receiving, because it no longer has the proper connections it wants to assign these no longer recognised input to something and it seems to connect them at random, so e.g. basic touch signals get interpreted as pain, or sensations from your little finger get connected to the finger next to it, etc.  So correction is about retraining and using your neuro-plasticity to your advantage.   You've got the NOI explain pain book, it should have some strategies and suggestions.  Make sure you discuss it with your new rehab team.

Good luck

-Heather

My neuro Physio Brendon in Clifton Hil, is one of the NOI founders.  I wish you lived closer to town so you could go see him.

Hi Mitch, I was concerned when I read the plan they'd put you on.  I wrote a comment but it seems to have not posted.  A good trainer or physio will do what they call a progression plan that works on the 2 steps forward one step back regime.  So you build steadily for a while and then you back off a level for a few days, and then you go back to what you did before the break and start increasing again.  The plan they gave did not appear to have enough back off for a fit person and certainly didn't make any allowance for or recognistion of stroke fatigue accumulation.

And that's the key you can't build as fast or for as long as a non stroke person, and then your back off time needs to be longer.  One thing to do in addition to your training is to keep a fatigue diary, rate your energy level at the start and end of each day (give yourself a score out of 10.) You should be able to see the pattern develop and how it links to your workload.  If you get a morning score of less than 4 for 2 days in a row back off until the score is back up to at least 7, during back off stick to your old 30 minutes a day stroll which should keep the muscles and joints moving.

After my last "bust" it took two weeks of gentle exercise (don't be tempted to stop completely) to get back to where I had been energy wise.  But that one took me about 5 weeks to build to before it hit.  I've been back on track although pushing/increasing more slowly for 2 weeks now.

I've also been working with a nutritionist on increasing energy through diet, and he's got me on pepitas,walnuts and flax seed oil, among other things.  You need a diet with increased omega 3s, magnesium, and calcium for muscle energy, blood flow and reduced inflamatory response.  I've found it works really well, my body composition numbers had been going up each month and then I overdid it and the inflamatory markers went sky high.

Hi Mitch I've recently started cooking regularly again.  For a long while I did the make do with pre prepared stuff routine.  But about 4 months ago I started seeing the nutritionist based at my gym so as a result I've been slowly cleaning up the diet.  Which means I have to cook for myself, so I can control what goes in and portion size etc.  The diet is all about getting me more energy, by improving blood flow and mascle quality. It was working really well until I went and pushed too far on the exercise ramp up.  So at my last check up my numbers were down, where they'd been on a nice steady improve.

I'm doing the cook once a week thing, about 8 portions that I then divide and freeze as single serves.  I'm mostly using the slow cooker so I don't have to chop finley for most things, and I only peel things that have particularly tough skins.  I've bought a mini food processer for when I need to do something like fine chop onions. One handed cooking is slow work, but worth the effort.  I'm loving the slow cooker as I can pretty much ignore it once it starts.  And it doubles as a pressure cooker I made a really good no stiring required risotto the other night.

-Heather

yep that's a really good book,  My Physio Brendon is one of the NOI members and teaches at their seminars.