Today was a rare excursion out of the house, back to the hospital but this time for Charlotte.
She was diagnosed with a heart murmur a couple of weeks back and today was finally her 'urgent' appointment to the hospital.
I didn't like her doctor at all, but we got through the appointment. He didn't hear the murmur but he said they can come and go so now Charlotte is currently sat on the sofa hooked up to a portable ECG machine that is recording her heart rate over the next 24 hours.
Typically the ECG department was what felt like miles away from the paediatric department and then once that was all fitted off we went to the pathology department because she needed blood tests too.
Outpatients was heaving and trying to get past people on my crutches was a nightmare and it seems you become invisible too, I had people trying to squeeze by me and kicking my crutches, people just suddenly turning in front of me and making me suddenly stop so my crutches don't go into their heels, it was ridiculous!
So now after my trip to the Krypton Factor obstacle course, better known as Kettering General Hospital I'm now sat here with the backlash. Legs are in extreme pain and jerking all over the place, a headache of doom and I feel like I've run more marathons than Eddie Izzard and tomorrow I have to do it again as we need to go back to the ECG department to give back Charlotte's monitor. Joy upon joy!
Luckily my gland/ear thing seemed short lived and those have both gone now so I'm feeling slightly more human.
I got letter from the hospital about physiotherapy and I have been told there is a 7 week waiting list so that's on hold for the time being.
Today is day 1 of my Amitriptyline. I've been prescribed 10mg and have to take it 2 hours before bed. I'm yawning my head off and my eyelashes are aching so I took it at 20 past 8 but I'm not sure I'm going to make the 2 hours before I fall asleep!
I've not really had the energy to Google it tonight but I'm going to look more into Amitriptyline tomorrow and it's use with ME/CFS. From what I have previously read it's prescribed for better sleep and pain, both things which I'm having trouble with, especially the pain.
So many friends told me tramadol is supersonic and does the job really well, it wouldn't even take a headache away for me but ME/CFS sufferers do seem to have an intolerance to normal pain relief which is why Amitriptyline is used in small doses so maybe (hopefully!) this will work for the pain because it's draining so badly on top of the extreme fatigue I already have. Codeine seems to work for me in some cases, but it unsettles my tummy so I try to take it only when I really really need to.
I'm looking forward to the weekend, I have booked tickets to see Alice in Wonderland 3D for me, Nathan, Charlotte and Nathans eldest daughter Beth. As silly as it sounds the cinema is quite cathartic for me. I get out of the house without having to walk far, get to sit down so not to tire me out too much and get whisked off to a fantasy world for a couple of hours which heals the cabin fever quite nicely and refreshes me. Sitting for so long does make me begin to ache but the film is quite a distraction and I top myself up on painkillers before the film and I seem to be ok. If I'm having a no spoons day I won't go because even sitting in the same position will about kill me, so I'm hoping I haven't jinxed things by booking the tickets today and I'll be able to go.