More scary not-breathing well times
I had a fabulous time at Yarndale a couple of weeks ago, a group of us (thankyou so much Nicola for organising) stayed at the Airton Quaker Hostel for the weekend and had a fabulous time pottering around (or being much more active) around Malham and then a visit to Yarndale for those who wanted to. I felt very supported by everyone and huge thanks to Carolyn who shoved my wheelchair all the way round Yarndale - no easy task when it's sloping and very uneven flooring.
But I came back on the sunday and went straight to bed and woke up about 9pm with a major ME crash involving my body trying to shut down totally. I wish it would learn that it actually takes less energy to continue processing all food in me rather than violently ejecting for around 6 hours - I ended up just lying on the bathroom floor at times as I couldn't manage to get back to my bed (all of 7 steps away).
It was another 12 hours before I could even tolerate a sip of water, which of course doesn't really help my body recover quickly.
Unfortuantely on the monday I then started a very minor cold which (as usual) had a huge impact on my breathing. My doctors were fabulous and gave me a prescription for antibiotics over the phone, which was faxed to the chemist and they delivered it for me. I also started steroids. Sadly at the end of those ABs I was still infected so managed to get as far as the drs for a proper appointment and a prescription for different ones. We discussed the possibility of me needed A&E/admitting and agreed I would go to Leeds hospitals as that's where I see chest clinic (rather than Dewsbury which is much easier to get to and not as busy!).
Matty, Beth and Jessica have all been fabulous at doing shopping for me, providing support and also looking after mum as I've just not been able to do anything.
Yesterday afternoon I was still struggling with breathing (around 370 instead of 480-500) and had a lot of chest pain just from the effort of trying to breathe, so Matty and Beth took me down to A&E, which avoided worrying the neighbours with an ambulance. the staff were fabulous, but due to my history (ie chest clinic patient) and lack of breath they didn't want to neb me unless I was admitted. the neb did help and I was sat on CDU waiting to be admitted when M&B left. About 11pm I was getting desperate to lie down and sleep so showed them the information about my ME and the impact getting too tired has on it (see above for throwing up). the staff were so apologetic but there just weren't any beds anywhere (I could hear them ringing round trying to move people and getting nowhere), in the end they brought up a trolley from A&E for me and parked it in the quietest corner they could find and left me to sleep. In the end the Big Chief came up from resuss just to see me and was again so apologetic about the situation. He felt that instead of me staying in, I'd be much better at home where I could sleep properly and if needed I could come back on sunday or monday - he would be on duty all sunday and would look out for me. My breathing was within the safe limit to send me home so I agreed and the NHS provided me with a taxi as it was around 2pm by this point!
today I slept till around 1pm (bliss) and woke to find that although the peak flow isn't any better the awful pain in my chest has subsided a lot which makes such a difference, being able to breathe without it really hurting is just amazing and incredible. so fingers crossed I don't need to go back today and will wait and see how tomorrow goes (Big Chief did say that if I go back on monday there will be more in the way of chest specialists around - and he will also see my consultant to update him).
what I need to do at my next chest clinic appointment is to talk about protocol when I'm admitted - Dewsbury are happy to neb me without keeping me in, but Leeds don't have that policy.
so yes, full of antibiotics and steroids, suffering side effects (thrush x both ends, bleeding, shakiness) but still here and still breathing. It was confirmed yet again that I'm on ALL the drugs and they are a bit stuck on what to do next!