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sue984 last won the day on July 3 2016

sue984 had the most liked content!

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About sue984

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  • Birthday 23/01/1960

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    music, animals, crochet

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  1. I think sleep is a fantastic thing! Healing and recharging is a plus for me any day of the week! If I need a nap I take it; most times I have trouble falling asleep, (I'm not sure what that's about) however, even just a rest where I close my eyes for a while is helpful. I've had tinnitus in my right ear since my SAH, and it gets louder as I get tired, so I have another way to gauge my sleep needs; the louder it is - the more I need.
  2. Sleep is so very important. I have been doing the same things before bed for so long it's now habit. I still have days when I think I'm doing well if I make it to the sofa, and that's usually the day after an outing of some sort. I've mentioned to my husband that I am busier in the morning when I feel better, but that I have a finite amount of energy, when it's gone - it's gone.
  3. It wasn't self diagnosed; if I gave that impression, it wasn't intended. Susan
  4. It took me years to find out the medical name for something I had been experiencing since my SAH; I have a "neurogenic bladder.' ("Oh that's what that's called!") I think knowing this information sooner, albeit sensitive, would've helped. I've often wondered why I had to frequent the loo so often, and I learned that if I waited for a bit, my bladder was sure to empty properly, and I wouldn't be back there every 10 minutes! Here's a link to describe it: https://www.nlm.nih.gov/medlineplus/ency/article/000754.htm I hope this information helps somebody. For a while I thought that everything that was going on for me physically would get back to normal; I was wrong. Susan
  5. Sometime's the fatigue's overwhelming! (It's like my 'get up and go' 'got up and went') I'd like to know too! Susan
  6. It's been 19+ years of no driving for me. One of my visual deficits is eye ataxia; add that to constant motion nausea and there's just no way. Fortunately for me there's a state program which has me being picked up and then taken home whenever I have a medical or dental appointment. It's been rather difficult losing the independence; it is what it is though, and I think I'm fortunate having learned patience. Susan
  7. When I could finally eat, I ate everything the hospital/rehab put in front of me. I went home on a pretty regular diet, since my swallowing had improved so much. Nothing bad happened until I was alone, eating a salad. A small piece of lettuce was blocking my airway, making it nearly impossible to breathe. (I remember thinking, "Oh great, I survive a stroke only to be done in by a salad!") I managed to remove it, and it was YEARS before I attempted salad again! For years I had a habit of coughing whenever I drank something. (Trust me, my computer screen got sprayed with coffee on more than one occasion) I tried drinking with a straw for a while; then realized if I <really> took my time, I was usually okay. (My pc screen was safe) I'm almost 20 years post now, and I've learned to take my time, small bites, have a sip of water or something between bites, and to lower my chin to my chest when I'm swallowing; it works. Susan
  8. I do too, and when I'm home I wear a medical alert necklace that I can press and alert emergency care if needed. Susan
  9. This was so me. I remember going to doctor appointments, and being completely trashed the next day - emotionally and physically. Over the years it has gotten better, and I now give my self permission, and plan to let it be what it is. Susan
  10. Hi Davie, Along with PBA, it might be worthwhile for you to read up on 'emotional lability' too; I think they're very similar - (If not the same thing under a different name) http://www.rightdiagnosis.com/sym/emotional_lability.htm ((((hug)))) Susan
  11. I went home from rehab in a wheelchair, and through some very intense PT I relearned how to walk. Now I'm okay usually in the house, (Just do a lot of leaning and holding on to counters, etc.) and I have a rollator to use outside on our property. No more canes either; I hold on to my husband, and have learned that shopping carts are wonderful! (The 1st time I used a shopping cart I was delighted at the independence it gave me!) So now I grab my cart and go! Everything is worse when I'm tired. I have learned to get my stuff done in the house, i.e., laundry, early on when I'm feeling better. I tell people now that when my energy's gone - it's gone, and don't apologize for it. My speech is worse, my balance is so much worse I've ended up falling and hurting myself. (Not pleasant, but a learning experience nonetheless.) Be kind to yourselves! Susan
  12. Oh yes, the weight gain! When I had the sah I was dreadfully thin. I had a two month stay in the hospital, was fed through a PEG for a while, but when it was removed I ate everything I could, and gained weight before I left - the doctors were very happy, and I, although very happy to be going home, was rather miserable because none of my clothes fit. For what seemed an eternity, my new 'stay at home sedentary lifestyle' meant I was home 24/7, most of the time alone, and free to eat whatever was available. As it turned out, I had developed quite a sweet tooth too, and a growing waistline. Fast-forward almost 20 years, I've improved my diet; I have relearned how to walk, and as a result have bought a treadmill, (Still have to hold on for dear life!) and what's called a "Resistance Chair" - I can sit down, (crappy balance) while I use the pulleys for strength training.I have lost about 30-40 lbs, (I haven't a clue how many stone that is!) and just keep plugging away at it. I exercise when I can, but certainly not as often as I'd like.
  13. Thanks for the warm welcome! Life after my SAH has been challenging at times, but also very rewarding. I've met, and continue to meet fabulous people. survivors and caregivers alike. I have moments when I definitely feel like a prisoner of my health, (I can't accomplish much of anything) and other moments when sheer determination is called upon! Like most when my energy is gone for the day, it's gone. (I've learned to get my housework and other stuff done in the morning.) Anyway... Thanks again!
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