Okay okay update! Yesterday I tried to walk for the first time in two weeks. It was incredibly difficult, it felt as though I was being choked, had 200kgs on the back of my shoulders, chest heavy and tight. Pain in my spine, back and down into my legs and feet as I tried to take one step at a time. Monday afternoons physio session I was trying to get out of the bed, walk to the bathroom and then back to the armchair. I did make this happen with the physio’s full assistance, as difficult as it was I tried. Once I finished physio yesterday afternoon into the first 10-15mins while sitting on the armchair the pain in my whole body was bad and I began to get blurred and doubled vision. I felt like I was being choked and became nauseous. The nurse then helped me get back into the bed and we called the doctor and we did all the checks before and when the doctors came. As I laid in the bed my whole body was weak and numb, heaviness on top of my chest, I felt like I was passing out and I couldn’t see. I kept calm and kept the nurses and doctors informed. I got sharp electrical spasms in my spine, a headache and pain behind my eyes and in my legs. After a few hours of trying to walk I lost more mobility. Any small achievements and changes I made in the last few days I lost and I was super stuck in my body, all over again. I really felt how I did when I first came into hospital two weeks ago. I was like fuck, this is horrible I felt like I was dying. The neuro team were informed, they can’t do anything regardless. They believe that this is going to keep happening and my body is going to shutdown as I’m trying to move outside of it’s limits. Laying in my bed last night I was just like do I just accept this body as it is right now. I woke Tuesday morning and the decline in my movement hadn’t changed. But I said to myself today is a new day. The neuro team came to see me and they said this is going to keep happening, I’m going to have these set backs because the connection is so poor. I said do I take a day or two off physio? Does my body need the break? Do I keep doing physio if this is going to keep happening? He said he still wants me to try to do the physio because if I don’t I could lose all movement and ability and he wanted me to talk to the physio’s to pace myself and have short breaks, or whether I needed a break in my mobility goals. I then laid there this morning and I thought to myself. Today is a new day Marissa! When the physio’s come this morning I’m just going to try. I had to get them to help me but I wanted to do it! I said yes!! Yes to a new day and a new chance to just try to make it happen. Nothing is going to change just laying here being still. So with their help I walked today. I walked out of the room, down the hall and back to the room, sat on the arm chair next to my bed. I was sitting here writing this, my body is still off but I’m making it do as it is suppose too and that is move! You can achieve more on the bad days, you can achieve greatness on the days you wanted to take off. This is not easy but I’m not stopping. This AVM can push me to give up to give in but I’m not going to stop now or never. Push me down and I will come back up with the weight of the world on my shoulders. I will still come back up. That wheelchair can just sit in the side line but I’m not sitting on it today that’s for sure. I did physio a second time in the day while sitting down and in the armchair doing some exercises to help straighten my back and head and stretch out the muscles. Then later today, Tuesday afternoon I did my third physio session. They helped me get out of bed, I did a sit to stand and walked out of the room down the hall and I wanted to go to the window to see the view of the ocean. We went there and sat down for a few minutes enjoying the view and then I did another sit to stand, got back up and walked back to the room. Then they helped me get back into bed.
All I can say is don’t give up today, appreciate every new day you get blessed to aim a little closer towards your dreams. Work hard or don’t work at all. You just need to show up, do it so you can get it done. I could die trying or die just laying there feeling sorry for myself. So I say I’m getting the fuck up now! So this process is slow and painful and I’m still along way to go trying to do things independently like getting out of bed, walking by myself and showering myself. I’m doing two physio sessions a day this hospital admission is just proving to be a very intense slow healing process. All I can say is just appreciate getting out of bed and walking. It’s very easy to be realistic and just accept the wheelchair and it may need to exist but I’m not going to stop trying to get this mobility better to improve my baseline of health and get back to some type of independence.

Sharing this so you can feel hopeful and happy. Don’t give up when it gets tough, give yourself a minute and then push through.