Good day all,
This is me again tonight. I’m grateful to Alisha for being my fingers and eyes last night. Thank you Alisha, I know I said it last night, but I thought putting it on here pretty important too. I am also putting out a quick shout out to a new follower out home her name is Marion. Hello Marion, I miss you too. This is thank to my sweetest Denise.
Today was a day of a new symptom. I will say that I am not pleased with it in any way. I have had five different episodes with it so far today. The first was within the first half hour of waking up. The new symptom is a piercing pain in the right side of my head. It lasts about thirty to forty seconds I think, I would probably have to ask Kyle as he watches them to be certain, but he is not in here. The pain runs from about two inches above my ear and behind my temple all the way to the back of my head. This is lasting much longer than the pains I get in my temple. I’ll tell you not happy. I’m glad I haven’t had one in a couple of hours now. I will make some calls tomorrow, plus I see Dr. Costello on Wednesday. It’s seeming that Kyle is now taking me instead of Pat. Kyle is scared that if Pat took me and I slipped off my slider board that she wouldn’t be able to help me at my driver is about ninety pounds soaking wet.
Sadly I also had another couple of episodes of my feeling of paralysis up into my brain stem same as yesterday and the day before. When this is happening I am starting to find better ways to describe them. When the pain runs up my spine from the height of my breastbone it seems to effect my vision a bit more. With my vision I end up with little white stars flashing in my line of sight this is with my eyes open or closed. Plus with this I tend to feel a bit faint and weaker throughout my body. This is the reason on Friday why I had said to my aid that I didn’t feel safe getting the rest of the way into the shower. I had already been sitting on the bath bench, but still felt unsafe, I’m just so grateful that everything ended up just fine. I’m going to call home care tomorrow to see if on Tuesday they can come earlier for bath day as I will feel safer getting a bed bath and I’ll just have Kyle leave me in bed, then I can use my slider board to get out of bed and into my chair when they are finished dressing me which can be done in bed too. I know I can use the slider to get out of bed because is a down hill slide just like getting out of the car, which is really easy to do. This plan just popped in my head as I was typing, nice how these things fall into place like this. Now they or I have to be nervous about shower day on Tuesday.
I have beans soaking until tomorrow morning so I can make my home-made four bean salad. The green beans have been cut and cooked the other three will be good for morning. Our pickling from last week is tasting great we tested them today. Wow things are tasting good around here. I hear right now Kyle out in the kitchen cutting up my fruit for my night-time snack. Ooh getting one of those pains I’m out of here.
Love and hugs Fiona:-)
Sorry I was too tired to post last night because I was having some issues with my vision. Hi, my name is Alisha and I will be typing Fiona’s blog because she is unable to do so.
Starting with yesterday, I was short-tempered from the get-go yesterday. The first thing that happened was Kyle was being snotty and he left my water jugs empty, when he normally fills them for me. He didn’t pour my smoothie for me, which he normally does. He didn’t do anything that he usually does, he was being snotty. I allowed his mood to impact mine, which resulted in me being quite angered. It was very foggy yesterday morning and he had to leave early for work which probably why he didn’t set anything up for me. To make matters worse I had to have a BM and Kyle was not there to assist me. It took ALL I had just to get out of bed and then more to make it to the bathroom. It was dangerous for me to be trying to leave my bed, let alone get to the toilet by myself. It will be the last time I ever attempt that again. The entire experience was horrid and frightening. I have no recollection of what I until home care came. When home care came in the early afternoon and she helped me into the shower. It was just as terrifying as the toilet experience. Once I was in my shower seat, not even in the tub yet, an awful feeling overcame me. I felt dizzy and an excruciating numbness crept from my shoulder blades, up my neck and into the base of my head.
I immediately turned to the aide and said, “I don’t feel safe. I don’t think we should do this.”
She reassured me that she would keep me safe and it was okay to continue but I wasn’t fully convinced.
All the while throughout my shower I had tiny white spots in my vision and the dizziness was accompanied by an overwhelming feeling of faintness. I thought might pass out right there. The pain residing in my neck was amplified and the worst I have ever felt. I have a theory that these symptoms are likely what was happening in my body in previous years while being paralyzed. But now I feel them because I am not paralyzed, and it is excruciating.
Once I was out of the tub and the aide helped me stand to dress; my legs were shaky. They haven’t been like this in a long time.
Moving on to today..
I slept through the entire night. I used to have trouble sleeping but now since the steroids have ceased I am tired ALL the time. I struggle to stay awake. It’s amazing how my steroids kept me functioning. After sleeping through the night Kyle woke me and put me on the couch around 8:15am where I nodded off again until 10:30am. The only reason I awoke was because I could smell breakfast. Kyle was making pancakes and sausages, and he hand fed me my brunch. Home care arrived and the very same horribly painful and dizzying experience occurred. I was grateful this time it happened while I was sitting on the toilet. It took both Kyle and the aide to stand me to get me dressed where I was greeted with that familiar heaviness and I could not straighten my legs.
After the aide left I tried to use my arm pedler but I could only do two minutes whereas two weeks ago I could fo twenty. We visited with a friend and then left to go to Olds. I normally get in and out of the car at every stop, today I was unable to. I did exit for dinner and grocery shopping and even that was a challenge. While in the grocery store I noticed my arms are very weak. I inquired to Kyle of how we could possibly afford a van with a lift when my arms are gone so bad I can no longer use my manual wheelchair. He said we would worry about it when the time came. I realized I lost my credit card while paying for groceries. I must have left it at the restaurant we had dinner in, but when we returned to retrieve it, it was not there. I emptied my purse and dug through it several times to no avail.I felt incredibly foolish and berated myself. While digging some more I found it buried behind another set of cards. I don’t understand how my brain is not functioning properly. My thought processes are not up to par. I realize this is just another symptom but it doesn’t make it any less frustrating.
We drove home and I filled the dishwasher, ran it, folded a load of laundry and now I am in bed and quite exhausted.
Love and hugs,
Good day all,
It’s another day where I wish I could say that it was a really good day. What I will say is that I’m not going to say much tonight as I just basically arrived home. It’s 11 and I can’t see. I will do this tomorrow.
Love and hugs Fiona “-)
Good day all,
I will even say that it has been a good day. Okay I will say when I wrote that starting line that it was true. I will have to say that I am changing that up just a bit. Not too much not to worry. I will simply say that was quite a few hours ago. I have been sitting in this chair for many hours now and that I have been doing insurance paperwork for well over three hours now. My vision is nearly gone now. All I can say about that is it was a good thing I learned to type in school. I’m also grateful for auto correct on the computer.
My day has been made up of a multitude of things. The UPS guy came this afternoon for my iPad already. I was stunned how fast that happened. I don’t have the new one, but the old one certainly left in a hurry. CO-OP Home Health Care out of Calgary was here measuring up my room to start hanging up the lift. Well it’s not actually called a lift, but at the moment I have zero brain system alive to name it. Any ways I can explain it I guess, then you’ll get it. They are going to place things on the ceiling and hang a lift from the rails. Aaha I have the rails and the lift named correctly. Okay so from this pint I hope it will make some sense. They are going to put this up so it is a start to getting me so I can have a sleep in the middle of the day if needed. Home care can use it with one person instead of requiring two. Then they can add a piece or two, or three, just me saying of course. The rails can be extended around my room to get me into the toilet and the shower. Ooh possibly even put me down into the tub so I can have a BATH!!! Wow oh wow how great that would be!! This would be expensive though. I think I would have to do some serious begging to the insurance companies. None of this will be happening until the REALLY expensive electric wheelchair gets approved. I’m thinking the twenty-five thousand dollar chair is a bigger deal than the rails into the bathtub. The one that is going over the bed is already settled. A girl can only ask for so much I guess.
I really am wishing, hoping, praying that I just wake up better on of these days and none of this will matter. That is my plan,okay not just mine. I do know that when my Mom calls every morning she is happy when I’m not sounding drunk first thing. I do know that when Kyle is getting me out of be he is always happier when my legs don’t feel like tonne of bricks, plus when he calls from work to hear my voice sound normal.
Tehe Kyle just came in and looked at all my typing and said “not bad for a girl who can’t see.” I looked up at him and said “thank God for the little red line that pops up under the words that I spell wrong.” It is time for Kyle to go to bed which means it’s time for me to go to bed. As I don’t have an iPad to type on it really is the end of this even if I’m not finished.
Good night all!
Love and hugs Fiona:-)
I’ve had a horrible day. I want to say thank you to all of your’s gag’s online to keep me going today. I will admit this has been the worst day that I have had in a very long time. I almost can say the worst that I can remember while I’ve been conscious. (I think this is how it is spelled) I can hope you know what I am meaning. I was just able to stand for the second time all day. My RN from home care was here this afternoon and we were discussing putting in the railings on the ceiling. I will admit the is not the conversation I was ever planning on having with another human being ever in this life time.
I would love to say that my day was full on enjoying things to do, this would be such a lie. I spent the first four and a half hours after Kyle put me in my Dad’s old electric chair sleeping with my head falling forward or how ever I slept. I sit here thinking now how I did it without falling on my head. I just nod forward I guess. My home care aide came at ten-thirty, this is what kept me going until noon.
I have spent the last hour trying to stay awake to do this for you too. I am so not well today, I actually asked someone today what they would do if they were having to live in my shoes what they would do? They said they would probably think about downing a bottle of pills and finishing it. This was a factual statement. I will say I’m glad that thought doesn’t cross my mine. I thank myself and the universe my for keeping my thoughts clear of such thoughts.
I really wish I had more to share, this has been my day. Please lets all send out happy thoughts to the universe for me to have a better day tomorrow.
Love and hugs Fiona