POTs at University College Hospital

It has taken the whole of January to recover from my trip to Copenhagen.  This week I have finally felt strong enough to get back to the "normal" yoga class I was doing, which I have really missed. This week I did the flipping the dog move for the first time too, which made me feel great, like I am moving forward with my yoga practice.  I've also done my class at the therapy centre and 5 minutes on the recumbent bike this week.  So, all very encouraging and I am focusing on this rather than the fact it has taken me a month to get back to this point.

Yesterday I went to see my heart specialist, a lovely chap who seems genuinely interested in the enigma that is the heart and ME/CFS.  He is happy with the way that the Ivabradine is helping my POTs symptoms and wanted to know if I would be interested in going to a specialist POTs clinic at the National Hospital for Neurology and Neurosurgery in London.    Off course I bit his hand off at the opportunity.  I'm guessing it will be the Autonomics department.  So, he has signed me off from his care, saying that I can come back to him if I need to and referred me to the specialist centre in London.  I didn't really thank him properly, so I think I will drop him a line.  It can be hard to find consultants who want to take the time to look into ME if they haven't had much experience of it in the past, or to look into your symptoms with ME in the equation rather than just as stand alone symptoms.  He has been prepared to read everything that I have shown him that I think might have been relevant, and agreed to testing that I suggested such as the tilt table and I feel we have worked together to try and improve this part of the jigsaw puzzle, for which I am very grateful.  I saw two heart consultants before settling on him and I also had a change in gastro consultant because the first one had suggested it was all in my mind and down to anxiety.  So, I would encourage anyone reading this who isn't happy with how their ME is being dealt with not to be intimidated by a white coat and to ask to see another doctor.  There are specialists out there and there are also those who are happy to learn along with you, just as my chap did.  I hope his experience with me will now educate any future interactions he has with people that are sent to him with a racing heart who also tell him they have ME.

So, things are pretty good right now.  I can also now go back to tightening up my diet again - there has been far too much birthday cake in my house over the past two weeks! - and look at trying to increase my cycling a little maybe, gently of course.

Swings in energy levels

A very busy week last week topped off with a late night party on Saturday finally got the better of me.  I spent the whole of yesterday in bed, with a brief interlude to come downstairs and eat dinner with the family in the evening.
I felt so bad when I woke yesterday, muscles so weak and no energy.  My heart was racing and I just wanted to lie flat.  Ant could tell straight away that it wasn't going to be a good day, it quickly becomes obvious.
Last night however I had the best night's sleep I've had for ages and have woken feeling pretty fine (certainly compared to yesterday).  My mind is clear and I want to achieve today.  I know I must rein these feelings in, but it seems so ridiculous that how well I feel can swing so dramatically in such a short period of time.  I am grateful of it when it swings this way of course!  So, another quiet day around the house just to be cautious, but at least I feel human again.

A Positive Day

I had a really great appointment with my Cranial Osteopath (CO) on Thursday.  He said that evreything in my body is moving better than it ever has since I started seeing him (about two years now).  He was very upbeat and commented on how far my system has come since my initial visits.  Of course, I know that everything is slowly moving in the right direction, but it's always encouraging to hear someone else say it : ).  There is apparently just one area of resistance in my body now and that is around the upper left side - ribs, shoulder, diaghphram.  It's like my body is being overly protective of itself in this area, interesting as it's the area connected to the heart.  Anyway, my CO doesn't normally say very much, so when he does I take notice.  I am sure he will sort this left side issue out.
So, I was on a bit of a high driving home.
Had a few hours at home taking it easy - sometimes seing the CO can completly wipe me out - then it was up to the hospital to see the heart specialist.  Haven't seen him since January so there was lots to talk about.  I told him that I  now cut my betablocker in half so am only having half a tablet every morning (have been doing this for about two weeks, down from three quarters) and we talked about what effect this might have.
He is also keen for me to come off them in time.  He is organising a tilt table test for me and also going to do another scan.  I asked him all my silly paranoid questions such as is playing the bassoon putting a strain on my heart? - It is really hard work.  The answer is that it shouldn't, infact it might help - hurrah!  So, another upbeat appointment.
I'm reading a book at the moment called Bounce: The Myth of Talent and Practice by Mathew Syed and it is making me re-evaluate the way I am looking at things.  In particular my illness.  One of the problems of CFS/ME is that you come to see yourself as a sick person and that is not neccessarily a good place to be mentally.  It becomes part of your identity.  I have heard myself a couple of times over the past few months when relevant in conversations saying to people that "I have ME".  As I say it I hate the sound of it, yet I still say it.  Why don't I say "I am recovering from ME"?  Bounce has made me re-think things.  Most people who set out to achieve something in the world have a strong belief that they are going to achieve  it.  There is no room for doubt and I do occassionally have doubt.  I must put doubt aside and take on the principles of sports psychology...I AM going to recover from this.  It's a fascinating book, well worth a read.