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
Sorry I haven’t been on for a while. I’ve been up and down. When its been good I’ve been seizing the chance to do some jobs around the house that I didn’t manage to do last year. Things that I could do sitting down, exciting things like cleaning cupboards!
I’ve now switched to gabapentin the side effects are a little weird, I’m quite irritable (poor hubs), dopey and then I get periods of hyperactivity! It is helping with the neuropathic pain. I’ve just got to get back on the midodrine again to see if the bladder side effects have lessened.
I’m hyper this morning due to the amount of morphine I’ve taken in the last 24 hours. At 230am I woke up with awful stomach pain. Joy of joys my bowel adhesions are playing up. I should have expected it as I’m having a nasty EDS flare at the moment, but I haven’t had an attack like this since 2010 where I ended up hospitalised. So for the next few hours I am on liquids only, which is a nightmare as unusually for me Ive woken up starving hungry. If I had known I wouldn’t be able to eat today I’d have stuffed myself yesterday.
The pain is very strange so I will try and explain it to you. Its not like cramps when you get a stomach upset. Its a totally different vibe that’s effected by movement, body position and eating. I have a large scar on my abdomen from 4 operations starting when I was 3 years old when I had an intussception (the bowel telescopes back on its self. When I was operated on my parents were told it was 50/50 on whether or not I would live). I had bowel adhesions in 1998 that needed to be removed surgically and Ive had a couple of exploratory ops as well. Due to being opened up so many times in the same place I have no feeling on the skin around the scar. This has led me to burn myself with hot water bottles etc but was great when I had my belly button pierced in 1999!
I get a feeling of constriction around the scar, deep inside my abdomen. It feels like the scar is being pulled into my stomach. Normally its a quick flash of pain and then its over and done with until the next one. Today its constant, even moving my arms / hands to type is causing me to notice the pain. The only treatment is painkillers and no food. If the pain becomes more than I can stand I have to go to hospital in case my bowel has become obstructed and this would require a surgical intervention. All the signs of this happening are clear, I’m not vomiting and I have been able to go to the toilet. So I will just see how it goes.
On the diet front (today should help if I am fluids only) Ive lost 9lbs since 4th January and I don’t seem to be losing anymore. Hubs has lost 21lb in the same time and his clothes are hanging off him. Next month he is doing a six mile run in aid of Cancer Research so his treadmill training has become focused on increasing his running time. At first he couldn’t run at all and had to walk briskly. Hes now up to 12 mins running and 8 mins walking so hes doing amazingly well. I am very proud of him. His mood has lifted enormously and he seems a lot less stressed – other than this morning when I told him about my tum!
I hope everyone is doing OK and thank you for reading – Rach xx