In January I had a good few weeks and managed to get lots of jobs done that had been bugging me for weeks. I actually felt the best I had in a long time. However things have slowly been changing. I noticed I have been becoming more tired, sleeping 11-12 hours a night, having very bad spinal pain and a feeling of just not being right. Nothing I could really put my finger on. Just the feeling something wasn't right.
I am constantly dehydrated no matter how much I drink and I drink a lot (4-6lts). I know when I am dehydrated as my fingers crinkle like I have been in the bath for an hour. When there is enough fluid on board my hands are normal. People ask me how can I drink that amount of fluid in 24 hours - its really bloody easy I'm constantly thirsty. The problem is I'm just not hanging onto this fluid despite the salt tablets.
The good news is that now I am off the amiltyptiline my bladder doesn't seem to be as badly affected by midodrine. The bad news is that currently the midodrine isn't doing anything. My highest blood pressure reading this week has been 102/53 not exactly the results the Dr's and I were hoping for. The blood pooling in my legs is worse than ever.
I'm also getting a whole host of new symptoms such as really awful headaches around an hour after I have eaten. A sudden feeling of a really swimmy head when sitting down which takes a while to settle. Also my legs are buckling underneath me when I am standing. I nearly ended up wearing the kitchen worktop on my chin earlier today. None of these symptoms come with any warning they just happen. Its beginning to frighten me.
This slow decline has me worried I am managing to hide my fears from my husband - he really doesn't need the added stress. Mother knows because during two phone calls this week I have sounded drunk because I have felt so awful I could barely string two words together. Unfortunately one of the phone calls was at 7pm and hubs wouldn't be home until after 10pm. I couldn't move from the chair I was in and I just had to hope I didn't pass out. Hubs did ring me around 20mins after my mum had and on hearing how bad I was asked if I wanted him home. I said no, what could he do? What could anybody do? POTS is such a rare condition if I went to hospital I would be put in an observation ward and left until morning. Leaving me open to hospital based infections and taking up a bed for someone they could actually fix.
I know this post sounds depressing, I promise you I couldn't be further from depressed if I tried. I am concerned how bad is it going to get? As I really don't want to be admitted to hospital.
So If I am MIA for a while you will know why, I am hoping it doesn't come to that. However the signs aren't good. Even my early warning system Frankie is concerned.......never a good sign!
Thanks for reading xx