Maybe I’d agreed to appointments being sent online at some point but obviously I’m not going to remember that am I 🙄…so when I received an email telling me to log into a web site I was a tad dubious at first….but it seemed to have all the right detail and I was waiting for an hospital appointment …….
“Patients Know Best” – that’s the name of the email account where my hospital appointment was sent from…..the link takes me to their healthcare web site with the same name “Patients Knows Best”, and there was my appointment….. but then they sent me another email a day later taking me to the link saying it was cancelled🤯….no explanation, no apology…..then another email, another appointment came through from them in quick succession …..and another…..
I’d been expecting an appointment to see someone, wasn’t sure who or what department after I’d been having strange episodes when out and about. Episodes which felt like my body was draining of blood, draining of all energy from my head to my toe and feeling as though, if I didn’t sit down I would fall down. I felt a bit like a balloon and someone was slowly letting the air out of me……
It seems to have happened many times now. Not like fainting, just like my body is turning off a supply slowly…. Often, if I’m nearer to my house, maybe in the garden, I can feel them coming on and I go inside and sit down for a while, then I’m fine. However, once I was at my daughters, pottering in the garden and they suddenly saw me slumped against the garden bin and came out and helped me inside. After a lie down and a cuppa I was fine.
It’s happened by the pond and I’ve had to lean against the pond for a while to regain strength enough to get home, knowing it was only a short walk.
But then the worse episode was when I was out for a long trundle through the fields, one I’d done many times. I felt the weakness starting through my body but knew I was close by the lake. I managed to get to the lake and sit there but realised it wasn’t going to go away this time. I txted my daughter to see if she could come and get me as it was the last part of my walk with car access. I walked up from the lake towards the gate but could feel my body becoming weaker and desperately needed to sit, but of course there was nowhere. By the time she got to me I’d almost gone and was hanging onto the fence. I’d staggered across the road holding onto her arm and fell into the car…..apparently I looked very pale and wasn’t able to answer her questions and that lasted until we got to her house, where after a sit down and a cuppa I was ok again. I wasn’t dehydrated.
The last time it happened was just last week when I was in town. I’d filled my shopping bag too full and was walking slowly to a shop where I was luckily meeting Gemma who’d txt me asking if I wanted to meet her at one of the shops. As I walked along, stopping every now and then to change hands, I could feel my body shutting down again. I seem to go on automatic, unaware of people or things around me. But I saw some steps a few doors down from where I was heading and just had to stop and plonk myself down on them. I mjust have looked odd, slumped on the steps, so after a few minutes, picked myself up and slowly went the last few years and sat on the ledge outside the shop. Gemma arrived a few minutes later and instantly saw that I wasn’t well and helped me across the road to a bench where I sat while she went to get the car…..
I would normally have hoped my Gp would sort me out, but not this time.Blood tests have come back normal, which I knew they would, as did my blood pressure, as I knew it would. I needed it to be done at the time to show any abnormality. It feels simply like my body is closing down and I want to curl up and close my eyes….
Anyway that’s why the Consultant appointment was needed. I wouldn’t have accepted it under normal circumstances as it would be at Hull Royal, my least favourite place. I would have put up with whatever was going on. But this is stopping me enjoying my walks, my long walks. I havn’t been out of the village since the worst episode as I’ve lost all confidence in myself to venture out through the fields which I love so much. Some would say ‘go with someone’, but what can they do if it happens, they can’t get me home, they can’t suddenly produce a nice comfy chair for me to sit on. So I feel stuck, hence why I need to sort it out.
My Gp hasn’t spoken to me, hasn’t seen me. All her information is coming third hand through Sarah, who obviously tries to describe the episodes On my behalf and my Gp can’t offer me video calling…🙈…so that’s why the referral initially went to the Neurology Department….sheer guess work I suppose, not having spoken to ME.
In this strange world we find ourselves in you would think Gp practices and hopsitals would automatically offer patients a choice of contact……well maybe some do but mine havn’t….and it’s been very frustrating for all of us. Once again the patient has to fit into services the way they want to deliver them and not offer a choice that might be more beneficial to the patient……The web site suits me but I imagine countless others may find it very difficult.
As for “Patients Know Best”….well that’s just a joke of a title….…find out what happened with the actual hospital appointment via phone tomorrow ……..