The ME\CFS Regime

Wake up at 4.50am
meditate for 40 mins
Get up and make my daily cup of hot orange with minerals:
Myhills magic mineral mix 2 grams, magnesium chloride 1 gram, ascorbic acid 1/2 gram, acetyl L Carnatine 1/2 gram.
and hubby a cup of tea.
Perrin head,  neck  & chest massage
Hubby does Perrin back massage for me.
Perrin twists and shrugs.
Take POTs medication (Ivabradine)
Cook myself breakfast of spinach and feta scrambled eggs and take with it:
multi vitamin, Co Q 10, L-glutathione, VegEPA, Selenium, Niacinamide (B3), B12
Later I will have a fruit smoothie in which to hide some spirulina, do a yoga class, take evening VegEPA and medication, then meditate again before sleep.
I will  eat gluten free and healthily for lunch and dinner, snacking on nuts and seeds.  I will enjoy a  piece of cake from the local farm when I meet friends there later : )
I will try and pace myself through the day.
I WILL BE HEALTHY.

A milestone

This afternoon I have been to the hospital to see my heart doctor.  I like him alot.  He isn't patronising and I just like his approach.  He says he doesn't know much about the connection between ME / CFS and Postural Orthostatic Tachycardia Syndrome, but he has been prepared to find out and has obviously enquired around the subject.  He takes an interest in the information that I've had from Dr Myhill and from the CFS centre at the Hospital for rheumatic diseases in Bath.  I get the sense that he's one of those people that just goes the extra mile.  Anyway today I have come away from the hospital feeling very emotional - I managed to hold it together until i got outside the building and then felt myself welling up.  This afternoon I was told I could try and come off the heart medication, stop taking the beta blockers.  Why does this make me feel emotional?  Because, when I was really poorly, right back in the early days of all this, I said to myself that I would know if I was recovered when I could come off the beta blockers and my heart was back to normal.  Now, clearly I am not yet fully recovered, nor would the recent tilt table test results say that my heart is reacting normally, BUT this is a big milestone.  I have been taking these tablets for two and a half years and there have been times when I've thought I would just have to keep on taking them.  To be able to stop is just a momentous sign to me of how far I have come and I feel emotional again just typing this.  I am getting better and I am getting stronger.  It easy to forget this and just get bogged down in the day to day - this week hadn't been particularly good (the fatigue finally subsided yesterday afternoon), but in the grand scale of things the general direction is definitely up.
He went on to say that if it doesn't work out coming off the beta blockers then there are other treatments he could try.  One of them is the Ivabradine which we have already discussed, but he also told me about a doctor in Bristol who is having good success.   He uses a drug which restricts blood flow to the stomach, this process leaves more of your body's blood free to circulate in the rest of your body and this really helps.  So, he basically said there are other options he can look at.
Although the ECG I had done at the hospital today was a bit up (always seems to be when i have it done there), the 24 hour ECG I had done earlier in the month had been good, a low of 69 bpm, a high of 117 bpm and an average of 79 bpm.  This sounds pretty normal to me.  Obviously I did very little that day as I wanted it to be low and I did have the beta blockers in my system, but even so, really pleased with that.  Once I'm off the beta blocker the doctor did say that if I find I'm having a bad day I could just take one as and when I feel I need to, but I'm hoping I won't need to.
He also said he was going to write to a Gastro colleague of his to ask about pancreatic efficiency testing.  I am doing my best to put all the right things inside my body, both through nutrition and supplements, it would be really useful to know how much of any of these are actually being absorbed by my system.
All in all I am feeling really happy about today.  Ant said that he was really pleased for me as I have worked really hard to get myself to this point and it is paying off.  He's right, I have, with his support, the last almost three years have all been about trying to get better, doctors appointments, hospital appointments, blood testing, other testing, drugs, nutrition, supplements, pacing, resting, reading around the subject, positive thinking, meditation, mindfulness, cognitive behavioural therapy, saunaing, cranial osteopathy, mickel therapy, perrin technique and just generally managing the situation.  I am going to carry on with more of the same and hope that my recovery continues to go from strength to strength.  Now I have made it to this milestone what will it be next.  How will I know when I've taken the next big step forward I wonder.
So, tomorrow I will reduce my medication again and take it like that for the next month and then on the 1st July I shall stop taking it all together.  Yipee!

Follow Up with Dr Myhill

Earlier this week I had a follow up telephone appointment with Dr Myhill.  It was very useful as we were able to talk through all my test results thus far and discussed many things.  The outcomes are that I am going to have a Translocator Protein Function test done which will hopefully give more information about why my energy cycle isn't working efficiently.  I'm also going to take some pancreatic enzymes to help with digestion.  Interestingly Dr Myhill said she thought it was too early to embark on the Graded Exercise Therapy suggested by my physio, she said that ideally I should wait a year after starting the supplements!  That's still 8 or 9 months away.
She also suggested that when I've finished my current batch of supplements I should start taking them transdermally (this will mean I don't have to try and digest them all).  This will be provided for me in a spray form which I just spray over my body after my shower in the morning.  Wierd, but it will mean that I can stop forcing down  the half pints of warm orange juice I'm currently taking lots of my supplements in. 
So, we'll give all this a try and see how it goes.

Fab Week

Whilst the children have been usefully and purposefully occupied elsewhere (music school), Ant and I have  spent the past week in the New Forest.  The idea was to relax and unwind and this we did.

The good news is that for the duration of the holiday my energy levels were great.  On Wednesday we hired a tandem and cycled 11 miles.  Ant said he couldn't feel me pedalling behind, but I was, all the way.  It's a bit strange being on the back of a tandem as you can't see where you are going nor do you have any brakes.  This means you have to put all your faith in the person in front of you and trust that they are going to do it right and not get you into any scrapes.  We manged the whole 11 miles without falling off and found a nice pub on the way.

On Friday morning we went into the forest and walked non stop for an hour and a half.  This is an unprecedented distance for me at the moment and I couldn't believe it.  There is still more... on Saturday after we had picked up the children, we went for a short walk and came to a huge sand dune at first I sat at the base whilst the others climbed to the top but then I thought I'm going to have a go and up I went slowly but surely to the top.  They all gave me a big cheer at the top and I felt quite emotional.  I was reminded of how hard it was for me to climb up to my seat at the Take That concert in July.  The difference between the two was incredible.  I don't know what has created this great difference, whether it is the Mickel Therapy or all the supplements I'm taking having some noticeable effect, I'm guessing probably a combination of the two.

The week was a great success and has felt like a great achievement.