heathber

Thanks Pam So nice to share with people who get it.

This is tiny update to boast. I finally did my first "run throughs" at Running Group on Monday. I've been going to Running group since Dec 2015 so it's taken 18 months to meet this first part of the goal. It's now just over 12 months since the cast came off after my leg surgery. I still can't really get up on my toes, so this was probably not really running which actually needs "flight phase" but it's a good approximation and starting point for improvement. So I'll call it "running" "Run throughs" means that they put a gait belt on you and then you "run" with little steps, as much on your toes as you can down the hallway (about 10 metres) with a therapist holding the gait belt just in case and helping you with rhythm. The aim being to eliminate the "gallop" rhythm that most stroke survivors have where the bad leg hesitates between pairs of steps. this is all about consistent fast twitch muscle response. I did 4 runs and each was a bit better than the last one. So there's still a very long way to go but ...

If they are silly enough to put those displays in the store aisles It's their problem not yours. I hate crowded shops with bits sticking out everywhere, my left arm knocks things over. I love to shop at the market. I think I cost some of the store holders more money than I spend, but as I said that's their problem not mine, and Banjo wouldn't even get into these stores the space left is so narrow.

Oh yes wjy do those of us in that mid range get so little support? I was 45 when I had my stroke and I learned very fast that I had to fight to get "the system" to acknowledge that I needed to access the help provided for senior citizens. And yes those family change rooms are marvelous things, I wish they were more common. Water therapy makes a huge difference it makes so many movements that you can't do on land accessible, It's mostly because the water provides support against gravity. as I learned quickly and still say constantly "gravity sucks". Your idea of a spa sounds brilliant. The thing that I want is the ability to hire a care with the hand controls I need. I've heard that this is available in the US. It certainly isn't here in Australia and it means if I go on a holiday I have to drive there (i.e. bring my car with me) or fly and then rely on buses and taxis. which is never easy in a strange town. It's not like the hand controls are expensive com[pared to the cost of the car and they don't stop the car being usable for other drivers.

Hi Tracy, I just want to echo Pam's response. All our past experience leads to who we are now. You don't want to forget but you do need to forgive (both yourself and Adrian) and move on. We've all made decisions and done things that in hind sight were a mistake but they still helped us evolve and going backwards doesn't work. As you are finding its often hard and lonely but there are people around you who care and who are doing what they can to ease your journey. You are loved and worth loving. Hang onto that thought, and be the butterfly not the caterpillar. Also remember we love you too -Heather

Asha I hope the times you need to list the things you can't do are few and far between. It's always disheartening to look at the "can'ts" in your life especially when you need to list them all at one time for someone, I do wonder if the people who create things like insurance forms realise how debilitating they are. As Jay said look at the things you love but also look at what you can do. When you have to list your "can'ts" balance them with a list (at least in your head) of your "cans". Life was not perfect before your stroke, and it no less perfect now. OK so I'll probably never make pretty cupcakes again but I can make a mean banana bread. Just don't let one bad/blah day turn into a lifetime of them You got this Heather

Oh yes the pain of what "kids say" when you are the nice kid from the small school coming into the big school where you don't know the "code". Been there done that and it was brutal enough without ADD. Good on you for surviving and it does help to remind yourself and put those words into context. We are both good people and worth it and we don't have to believe or listen to the negative talkers from our past any more. I still need reminding occasionally too that I am not that person. Glad you found a good coach. -Heather

Hi Tracy, As Lin said being stingy by putting yourself first is not anything to feel guilty about. Having a plan is a great first step and you have done that. But also like Lin said please be careful with the sun exposure. I also come from a country with scary rates of skin cancer, and yes you need some Vitamin D, but a tan you don't really need or want. And also I have learnt the hard way since my stroke sunburn knocks you around a lot more now than it used to, so you really don't want it and clouds do not stop UV so those overcast days are the most dangerous because you don't feel the sun. Other than that I love your recovery/improvement plan and I sort of wish I could join you. I hope there's a garden for you at your Dad's. Take care and have fun -Heather

As usual Tracy I love your poetry, the world is not all sunshine and emotions have to go outward or you'll curl up around them which is very bad for you. So glad you have found a way to send this stuff out of yourself. We hear and love you "this too shall pass" I know you'll find a way forward. Hugs -Heather

Kelli, You've explained it really well. I have a nephew with ADHD, and the flack we got as his family for putting him on "drugs" when "his problem is just poor parenting" He also was diagnosed with learning difficulties due the the ADHD. As a young adult now he manages it very well (I have no idea if he still uses the medication, or if he's learned coping skills). But I hate to think how hard it must be to manage combined ADHD and Stroke effects. What we found with my nephew was that he could concentrate on a single task but only by completely blocking out every other thing. When he was doing something he wanted to focus on he would shut out every other stimulus, including the demands/needs of his own body. It was sort of scary. Hugs -Heather

That's wonderful Kelli I'm so pleased for you. I had a similar response when I was finally referred to the surgeon to fix my shortened calf muscles. In my case only 5 years after asking EVERYONE if there was anything that can be done to make my leg more functional. My miracle man was also a pediatric specialist. You feel slightly silly sitting his waiting room but what the heck if he can help.

Change can be tough but it often helps to get out from under each other's feet. My sister and I fought like cats when we lived under the same roof but once we each had our own lives we got on much better and are now good friends. We even choose to go on holidays together sometimes. Also while I love my mother I could not live in the same house as her for very long without us both blowing a fuse.

a pinch of cayenne and/or chilli powder with some coconut milk is also very nice

Sue your blog today makes me think of the quote from Trainspotting (probably prompted by it being in the news so much the last few weeks) "Choose Life" If your traveling brings you down this way let me know and we can meet up, go to a gallery or something ENJOY is a good goal word for the year I may borrow it. -Heather

Tracy that is so beautiful and expressive. I do hope that writing it down helps you to deal with this feeling. I agree with David, "may you forever have "no idea of the right way" !" Hugs -Heather

I approve of that system. I do something similar for my work. I keep a list of what has t o be done for the month that includes the pre requisites for everything. and at the end of each day I go through the file and mark things in different colour according to their status. Then the start of each day is reviewing the list and colour coding what has to get done today. things don't usually get crossed off my work list as the routine repeats each month, but that sense of acheivement when it's all coloured in green at the end of the month.

Keep it up as long as you can Tracy. I enjoy checking your list against my mental one. So glad to hear that your energy levels are going well at the moment. It makes a big difference once the fatigue starts to taper off. Just remember not to overdo it as this is the danger period where you start to push limits and every so often they bite back.

A couple of photos - I hope the security setting lets you all see them https://www.facebook.com/DSAinverloch/photos/a.565376253664855.1073741838.502331463302668/565378006998013/?type=3 https://www.facebook.com/DSAinverloch/photos/a.565376253664855.1073741838.502331463302668/565376796998134/?type=3 https://www.facebook.com/DSAinverloch/photos/a.565376253664855.1073741838.502331463302668/565377126998101/?type=3

So today was a surfing day. The one last month got called off because a whale carcass had washed up on a beach a bit close to where the event was scheduled, and the authoraties were being nutty about possible sharks. OK so the risk of a larger shark being in the area was increased but REALLY it had gone from minimal to minimal + a tiny bit. However the local papers were being stupid about it so they cancelled our day. Not because the risk was significant but because the publicity if something went wrong would have stopped it forever. When will people accept that sharks are a part of being in the sea and mostly they prefer to leave people alone? Today we were at a beach further down the coast. So I had a 2.5 hour drive there and back. And right now I'm stuffed! It was a magic day though. I had 2 times on the board, with 4 rides in each set. We had perfect weather for it. air temp about 28, with a light breeze, sunny but not too bright sand comfortably warm. water temp about 15. So 8 "surfs" a little walk on a beach and 5 hours in the car has exhausted me but I'm happy exhausted and I don't really care. For 5 of my 8 rides I was on my knees, for the others I was lying on my stomach. For someone like me I get on the board facing shore in knee deep water and then the crew carry/push me out to the break, then a pilot gets on the back and does the kicking/steering and the support crew form a funnel back to the beach and stand by in case they are needed. I got a serious amount of water up my nose on a few ocassions as we were backing out. And I fell off in the shallows twice at the end of a run, and had to be hauled back to my feet, but there's nothing like the joy of being in the sea, especially when I know that there are plenty of people about to not let me drown. The volunteers are amazing. The surf day is organised by the Disabled Surfers Association and anyone with any sort of disability is encouraged to come along and get wet. They have volunteers to help you with changing in and out of wetsuits and they have mermaid tail suits for people who can't walk or easily get in or out of a normal wetsuit. They have beach wheelchairs and portable hoists etc. For those of us who are more mobile the volunteers help you across the sand and even though I go without a carer it doesn't matter. The surf boards they use are ultra big soft learner boards about 3 meters long and not quite a meter wide.For people who need it they use water beanbags to prop them up. The surfers are all ages and so are the volunteers. They must have put at least 150 disabled people onto the water over the 5 hours that the session runs. and there would have to be about 20 volunteers for each surfer. So it's a huge exercise to run it. They do it 3-4 times each summer so hopefully I can do it again next month. I was supposed to be going out to a film with Mum and Dad tonight but once I got home I rang them and cancelled. Maybe I'm finally learning to pace myself a little. Don't count on it though

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.