walking is nice to be able to do!!

Well I have had an interesting week! After last week’s activities I thought that I had gotten away with all the horrible flares etc that comes from doing anything. But no! I wasn’t that lucky and by Monday I suddenly was not able to walk. I could only just stand and kind of get around in a kind of pain that I hadn’t felt before. It was kind of like walking on broken glass but your legs wouldn’t move to get you safety. It was just too painful to stand, let alone walk. And if that wasn’t scary enough my dystonia, spasms and cramps had gone into overdrive and I was constantly felling like I Was about to go into a seizure. Oh, and I can’t forget my sudden inability to pee and …. I’d sit there ready to go and my brain wouldn’t send the message to let anything out. Basically I was “crapping my dacks” (no pun intended) because this flare felt like it had come from nowhere and was going to leave a permanent mark on me. I’d had days to recover from having my 4 year old cousin stay with me. I’d had the little flare to pay for that one. S really this felt like a cruel blow that had me feeling fearful of my future.

The only time I left the house was on the first day when Mum came home from work and told me I was going to the beach to soak my body in the ocean. The horror!!! Lol. So off I went, I managed to get my swim suit on by myself and get myself back to the lounge to wait for everyone else and I was stuffed. I really didn’t want to go. Sleep was the better choice for me. But mum dragged me out anyway. Lucky that we get to park on the sand here and it was only about 20 metres to the water. I was really touched when she helped me walk out to the water and into the sea. Mum surprises me all the time with the way that she helps me. Once I was in water over my waist I was feeling good and for the next hour everything was fine I love the way buoyancy looks after you. Funny story! I couldn’t do my bikini top up tightly because it hurt too much. Normally I like to be strapped in tightly. I didn’t know that boobs float. Haha!!! They really do and I thought it was really entertaining. At least I wasn’t going to drown. Lol. The beach was great and cooled me down, gently massaged me and gave me a big natural hit of magnesium. I was walking a bit better after but only for an hour or so and I went down hill again.

I will say that I’m so happy that I am in the half way area of my ketamine infusion cycle. The extreme CRPS/RSD pain that we all know so well was not a part of this flare. Not sure how I would have survived this one if I did have the pain. What pain that I did feel was cramping and shocks from spasms etc. My body still ached and hurt to stand and use, but it was only a small fraction of what I could have experienced. I’m really thankful for my wonder drug and that it helps me like this.

Lucky for me this only lasted 3 days and today I woke up able to move my stiff legs and only needing to wait for my morning meds to kick in before moving around. I’ve done some Physio today and loosened up my legs and even went to mums café for afternoon tea. I’m feeling really lucky because I didn’t see my situation improving. This was the kind of flare that hits you hard and feels like the next level of the disease, Scary stuff. I’m really grateful to almost be back to normal. I do think my disease is still progressing at a fair rate but this would have been too much.

To celebrate my legs getting back to work, I think an appropriate song is in order!

Hope your all well. xx

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