heathber

Hi Sue, is there a reason your compression stocking would need to be changed if it got wet? If it's tight enough to be effective you shouldn't have to worry about getting sand inside it at the beach. So why not just go swimming with it on if you want to be spontaneous. Be like the football players who wear their compression shorts under their normal shorts. Also if you are getting the white ones why not dye them to make a fashion statement. I know leggings are probably not part of your current wardrobe but if you can think of the stockings as leggings it may be less of a blow to your fashion sense. Also lycra leggings should slide easily over the stocking, and you can get lots of different colours and patterns in those. and wear dresses or tunics over them, treat them like fancy tights. I know this is hard as it is not what you were expecting. You now need to start thinking outside the box and work out how to adapt to the change. If life gives you lemons etc. Given this is about your self image it's probably not going to be quick or easy, but you CAN do this. -Heather

Someone's on the good stuff and I don't think it's you Pam.

Oh Tracy, HUGS Having to fight for basic health needs sucks, its not like you don't have enough problems already. It makes me so glad I live here where basic medical services are mostly government funded, we might have to wait for things that are not considered urgent and make some co payments, but mostly we do OK. I do hope you find a way out of the depressive cycle, the sleepiness could so easily just be a depression symptom. But when you are already feeling a bit down, something like that is such a kick in the guts. Been there a few times lately myself because a new medication was stopping my lexapro from fully metabolising. Was a relatively simply fix once I worked out what was going on, but small things can be so overwhelming and hurtful when you're already running close to the edge. Take care and I hope you find the energy to keep on fighting. YOU CAN DO THIS

Nancy as Asha said I'm sure this is a positive experience for Dan but I also agree with you that not making it a daily thing is wise. Your work needs to be a place were you have the power, at least when it comes to Dan's activities. He can't live with you because of his controlling behaviour, you must not let him take the power in your work place too. You need the money and the "me" space. Hugs

When the doc or physio asks to see the soles of your shoes you know you've been caught!

At least you now know what it is! Often that's half the battle. Once you know what and hopefully why you know what to do when it's bad. Pain can wear you down so easily. a hot or cold pack may help for short term relief.

Hang in there Sue ((HUGS)). There's nothing wrong with a bit of an emotional wallow occasionally it's when it becomes the norm that you need to make the effort to kick it.

Asha, I do hope you find a solution for the pain in your good leg. Remember your "good" leg has been doing more than it's share for a long time now so its not that surprising that its letting you know about it. Its probably a good idea to discuss it with your physio. My physio, often does tune up work on my "good" arm when it gets overuse issues.

Pam I so understand this although I don't have the pain (thank goodness). Nearly 8 years later and I still haven't internalised how much longer it takes me to do the ordinary things. So I'm constantly running late and I hate it. I was always the early/organised one but not any more. When you work out how to get your head to understand the limits of the new you please share the secret. In the mean time hugs and congratulations to us both for still getting out of bed each day and getting on with life. -Heather

Hi Pam, Good to have you back on the board/blog. I approve of stuffed animals especially where/when access to live animals is not easy. Thankfully I have a family/friends who think similarly I was given a great collection of soft toys while I was in rehab, I know they helped, the best was a full size articulated teddy bear that I called Lenin and kept in my hospital bed with me. don't let anyone shame you about bunny I like that she has her prayer beads as well. Hugs -Heather

Mixed news but yeah to kicking it to the curb!

My family call it exercising my stubborn. we are taught that being stubborn is a character flaw, but it's also the character trait that gets people through these sorts of challenges. NEVER SURRENDER!

You are right your immune system is not coping at the moment. Vitamins A,C,E Zinc and Echinachea may help and make sure you are getting enough rest but also some exercise (listen to the body about how much exercise is right). I also like Sue's suggestion of sitting in the sun and getting some vitamin D, if/when the weather allows. Take care of yourseld and I hope you kick it out soon!

You got this. Go Sue!

Hi Sue, I'm back on the medical roller coaster myself. Not as immediately dangerous as you are going through but sufficiently uncomfortable that what you say here resonates deeply. The issues in your "little" hospital appear to be endemic,I spent 5 days in the Alfred here in Melbourne and it was so frustrating seeing the nurses either unwilling or unable to answer call bells in a timely manner. However I did meet someone who's just starting on the brain injury recovery journey (she'd recently had a brain tumour removed) and she said it did her no end of good to share a room with me and see that recovery was possible if not perfect. we are still chatting via text as she has now moved on to a rehab centre. I do hope this new chapter of your life comes together for you soon. -Heather

Hi Chris, Nice to meet you. I meant to reply to your forum post, but for some reason it's locked and I can't. I love your signature "worry is a misuse of imagination" aint that the truth! I'm big on risk management, which uses the same sort of imagination but instead of worrying you make plans to deal with the what ifs. And for some things the plan is "forget about it and/or let someone else look after it" We are all Wonder Women in one way or another. Since I started on this particular journey many people have told me they can't understand how I do it "it's so hard!" my response and it suspect yours is very similar is "I do what I have to, there's not really any choice" OK so I'm now more limited in the way I can do things and I have to be more careful about how I tackle some things but that isn't a reason not to do or try new things. Life is for living so I get out there and live it. Yes sometimes I pay for my fun with fatigue etc. but its not like I don't know it's going to happen so that's a "risk" I need to plan for. I hope you enjoy this site there are some great people here! -Heather

These days I try to organise my vacations with a recovery vacation afterwards. e.g. after my NYC trip last July I went on a week long cruise before getting on the plane to come home. And just now I had 2 weeks off for xmas and new year so I went "hiking" for the first week and then snoozed at the family country place for the week after.

How far away is your son's house? can you take a taxi, or get a care worker to drive you? or even get you son to collect you the day before and stay overnight. I'm sure there is a way to do this you'll just have to get creative. But I feel your pain. hang in there.

yes you did

I accidentally created a second blog too, I never worked out how to delete it

That does seem to be how it goes in life. When you can't cope with more you get lumped with everything at once. Hang in there :) I've had that discussion with the panel shop myself. Thankfully they were a bit more accommodating than your guys seem to be although it sounds like your 2 weeks has become 4 days so maybe someone heard you. In my case being the strokee and completely dependent on my car to get around they got the parts in before I left the car with them. I can't use a hire car as I have to have special controls fitted and hire cars don't do that.

Thanks girls I knew people here would GET it

I've just got back from today's Running Program Session. This is the second one I've been to since the toe surgery. Last week I had pain after 3 sets of stairs so we had to stick to low impact, low stretch activities. Today I started with 6 minutes on the cross trainer. followed by 10 sets of stairs with no discomfort at all. Did my total gym left leg squats and some "calf raises" also all fine so then we moved across to the mini tramp. Once on the tramp Hannah got serious about getting me up on my toes. which I haven't been able to do for probably years. between the curly toes, spastic calf and calf surgery. I felt like a real cltuz as I just couldn't do what she asked. It turns out I've been compensating really well by using my knee rather than my ankle, but now she wants me to do it the right way (as physically it should be possible now). We eventually got me doing it by taking my shoes off and using the total gym at almost flat, with Hannah providing tactile feedback. It was so hard to do I was dripping with sweat and exhausted after just a few. But I did it, now to make this the move the body wants to do rather than the other way. Then I'll need to build strength again so I can do it with weight and gravity. I feel a bit like I'm back at square one, although I also know this is how it has to be done. and I'll get more from unlearning the bad habit. It's just always so hard to take a step back so you can move forward.

Indeed Sue everyone has been telling me that since my stroke "Make haste a little more slowly please". But I was following instructions this time, I know that healing on the affected side is slower, but so does Paulo so when he took the dressings and stitches off and said go back to normal activity I did. Turns out we should have waited another 48 hours, oh well no harm done. And Lin we chatted via text for 4 nights in a row. I don't think I'm going to do more than that for the moment.

The surgery on the toes has been very successful so far, although I over stretched the wound the other day and it popped a little, so I'll probably get a scar from it now. ( Paulo will be disappointed, he tries so hard to make it an invisible scar) I did some walking tests at the gym last night and Quincee was very pleased, as I'm rolling over the toes cleanly. I feel a lot faster too. I'll be interested to do timed tests at the next spacticity clinic visit.