Jilly
Forum Replies Created
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Hi Patrick. When I had a 50 minute MRI, I was anxious too. I found the thing they put over your face the oddest part. What I did was shut my eyes and controlled my breathing. I got through doing that, I never opened my eyes, as it was disorientating.
Tip, ask them to talk to you with updates of how much time has gone by. They didn’t talk to me which I thought was poor.
Take 2 valium, that should take the edge off.
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Not being able to walk or run like I used to. That would be top of my list.
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lol Ed, I bet you have some stories too.
I saw my doctor about all this falling out of bed stuff and I have been fast tracked to get a fitted bed rail. So that’s good.
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Hi Ed and John.
I have tried a body shaped bean bag next to my bed but it’s hard to get to my bed with that., and a bit slippery. Had a new idea and placed two pillows under the fitted sheet, felt like spooning, that’s been awhile lol. My forehead and left arm still hurts.
I would like a rail of some kind that can be raised up and down. I have contacted the health system and have been put on the waiting list to be seen. Otherwise they all say I might need a hospital bed, yuk.
Our health system like many others is stretched to capacity with the Covid. I wasn’t able to get an eye exam at all, not even 6 months away, I may have glaucoma, ekk.
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I knew it.
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And that’s why you have children. To help when shit happens. I don’t have any children…I wonder who will care for me when I decline.
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Wow, that sounds like fun. She’s in a car right? Or is she racing in a wheelchair?
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Thanks guys. I just don’t know how bad you have to get, but I am very slow moving with my walker. I have one good leg, but even that doesn’t seem to help, my arms are good.
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I got excited last night seeing the red moon that hasn’t been seen for 800 years. Wow, and I saw it, beautiful clear night it was, so lucky to see that. I would load a photo but I cannot figure out how to do that here.
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Hiya John, thanks for chiming in.
I wonder at what point do I move to a wheelchair. I don’t know how bad it has to get. I suppose if I am dragging my leg is an indicator.
I can’t see myself playing wheelchair tennis, I have trouble just leaving the house. I’d rather be dead than live like this, it’s very pedestrian and predictable.
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It would be a great day when it does.
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Hiya Ed.
Well it’s been nearly one year no covid in the south island but just yesterday someone flew from Rotorua to Blenheim with covid being the first person in the south island with delta, we are pissed off. Why don’t people stay off planes and stay home. Soon delta will be everywhere. People can’t be trusted!
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Hiya, after my second Pfizer jab, the next day on reflection my PPMS symptoms got worse. My affected left foot and leg felt numb and heavy, much harder to walk with my walker. Thankfully it lasted only a day and a half, and a really sore fat arm for 4 days. Very strange experience. I feel like I got a glimpse into my future with MS, or not. I phoned Health Line and they sent my list of symptoms to the head officials and my doctor. But yay, double jabbed now.
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BELATED HAPPY BIRTHDAY JOHN!
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This morning I was one quarter of the way getting out of bed, then I fell out and landed on my knees. It all happened so fast. I think I just slipped off the sheets and my weak left leg slipped. HA!…I’m ok, took me a few minutes to figure out a way of getting back up again.
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Hiya Josh
We can all get angry and irritable. From my experience with having PPMS, I’m just angry I have it. But in saying that one has to come to terms with it and give yourself a break. She may not feel like she is adjusting very well, but the truth is she is doing better than she thinks she is, even after 7 years it’s always with her and does take some time getting use to it. It like grieving a loss, it’s a huge change in her life. I have forgotten how good it was to walk, I don’t know her symptoms or what health issues you have. All relationships take work and compromise, give and take. Really hard to get those two things right. Good luck.
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Great effort Ed lol. My roommate is 73. I have no idea how that happened!
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I thought I already replied here, and it was a good reply, but I cannot find it. Maybe I dreamt about it.
I turn 59 yesterday, this is my last year in the 50’s, ekk. Time is blasting away. We are all time travelers at warp speed.
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I used to drink a lot of alcohol and I started falling over all the time about 2 years before I knew I had PPMS. On the plus side I gave up drinking because of MS. There is no way I would be able to drink to the level I used to the way I am now. I would be on the ground more than upright lol.
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I have PPMS and use Oxybutynin for about 3 years. They work really good, but for how long as I have had to up it to two a day. They also helped number two’s as well, takes the sense of urgency away, giving me time to get to the bathroom. Yay to that!
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Nice you remembered me Ed.
The Multiple Sclerosis Society of New Zealand has added this website to their news letter. I am hoping more people will join.
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Fare enough. Enjoy Florida. I visited Florida back in the early 2000’s, it was very warm there. I also saw a total eclipse of the moon there. Always look up, I say.
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hiya, Ed, why can’t we load photo’s?
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Hi Stephen, sounds like a rough day. You need a support person, like a family member or close friend to bat for you. How dare they treat you like that. It’s pure ignorance.