Thursday, 31 May 2012

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!

Wednesday, 30 May 2012

Needing a boost

Well, I'm not sure how I'm doing now.  When I went to my Perrin appointment on Friday I felt I was teetering on the edge of a crash.  On Sunday I took the children to the local swimming pool -  a bad move as later that day I had to drive for over an hour to collect Ant from the airport.   So, definitely over did it Sunday.  Low and behold Tuesday - 2 days later -  fatigue set in, in fact it probably started Monday, I was in bed by 8pm and last night I only made it until 7.30pm.  I almost fell asleep in the afternoon sat in the garden except that the noise of my book falling out of my hand and clattering on the patio below woke me.  After the swimming pool trip on Sunday I had to go to bed for nearly 2 hours in the afternoon before my drive.  So, my fatigue is definitely worse at the moment.  I awoke unrefreshed this morning and my limbs, particularly my thighs, are just so heavy.  I've just delivered my DS 250 metres down the road and it was so much effort, especially on a slight incline.  The question is, is this a result of the Perrin treatment or is it just because I have overdone it?
No nausea or headaches after my treatment on Friday, but I have had tenderness under my collar bones during massage.  My sleep has been a bit weird since starting the treatment.  It feels like it has been fairly deep sleep, but then I wake really early, 4.37am this morning.  Then I doze in a not quite asleep sort of way until about 5.30 - 5.45am then I start meditating, so, this has been quite good for my meditation practise.
On Monday I went to see my Cranial Osteopath whom I haven't seen for a couple of months.  He was generally pretty pleased, said my body had responded well to the treatment, but that he could tell it was tired and that I was showing signs of selenium deficiency.  I am already taking 260mcg of selenium a day so I am going to speak to Dr Myhill and see if I can get my level checked.  It could be of course that I'm just not absorbing any of the stuff that I'm putting in in the way of supplements.  No way of telling really.  His treatment really calmed the inner agitation that was going on in my system and I could have fallen asleep there and then on his table.  To finish with he did the weird thing that he does just under my left ribs which makes my whole diaphragm harden and tense, it makes me feel very emotional when this happens, tearful, and then I get this strange rippling sensation as it releases.  The closest I can describe this sensation of tensing to is the uncontrollable urge to push down that you get when delivering a baby, it's the same sort of sensation.
So at the moment my days seem to be the typical rollercoaster pattern that I am very familiar with, really well last week and physically low this week.  Going to the theatre tonight, so need to take it easy today.

Thursday, 24 May 2012

Post Exertional Malaise and research

A strange week really, my limbs have felt heavy all week.  The one minute marching that I have to do 4 times a day as part of my Perrin treatment feels like hard going.  However, despite this I "feel" well.  I feel good.  On Monday I actually did a bit of digging in the garden.  I helped a friend move a rhubarb plant (although not really sure how much help I was) and then later I dug enough to cover two short rows of potatoes in soil.  I know for sure that an attempt at this sort of exercise last Spring would have induced an instant "crash".  By crash I mean an immediate onset of symptoms making you have to stop what you are doing.  For me this would take the form of a feeling of increased gravity, like the sky was pushing down on you.  My muscles would feel weak, especially my thighs, like it's just too much to support the weight of my body.  A general feeling of malaise comes over you and you feel bad. It is often too much of an effort to even speak or eat when this happens.  I have come across an interesting article about Post Exertional Malaise here
There was also an interesting piece of research which was touched on in this months Inter Action magazine.    The European Journal of Clinical Investigation showed that compared to healthy people ME patients have a profound abnormality in bioenergetic function when exercising.  There is an increase in acidosis within the muscle and an almost four fold prolongation of the time taken for the muscle acid to return to normal compared to normal controls.  The total post exercise acid exposure was approximately 50-fold higher in ME patients when exercising to the same degree as normal controls.  Of course they go on to say that why this should be they really don't know, but the process of returning acid levels to normal is  regulated by the autonomic nervous system so it might be related to the autonomic dysfunction found frequently in ME patients or a reduction in vascular run off may also be a possibility. 
I sort of feel as if the scientists are getting closer to finding out more about the causes.  Three new bits of research have just been funded by Action for ME, one of those is about muscle dysfunction, one about sleep and one about cognitive impairment pre and post exertional malaise.  It's just great that this research is being done, but of course it is all funded by donation and charity work.  I am inspired to try and raise some money.
So, going back to my digging, not only did I not crash during digging, but neither did I have any delayed fatigue response - which I've been waiting for all week.  This is good news and I can't help linking it to the Perrin treatment as this is the only thing that has changed in my routine.  I really look forward to my treatments, it's like I'm just filling time for the rest of the week until it's time to go again - not a very mindful way of living!  It's just me being my normal impatient self and wanting things to happen NOW.  Fortunately I have Ant at my side to offer his calm measured approach whenever I get too carried away.

Sunday, 20 May 2012

Perrin Tecnique - second treatment

Had my second treatment on Friday morning.  It wiped me out a bit in the afternoon, I could really have gone to bed, but didn't as the two youngest children were at home, so put on a Star Wars movie instead and sat with my little one on the sofa.  On Saturday morning I was nauseous from pretty early on and it lasted most of the morning.  By 6pm I had a bad headache (I don't often get headaches) which lasted all evening.  Both of these I am taking to be good signs that the treatments are having an effect on my system.  A bit nauseous this morning (Sunday) but not as much, it reminds me of being pregnant.  Sleep has been much better these past two nights which is great.  I've been sleeping for 3 hours at a time rather than the 1 and a half hours at a time I was managing last week.
I even risked taking a FIR sauna this morning.  I haven't been saunaing since I started the Perrin treatment because I didn't want to mess it up.  I've been fine and starting perspiring after only 27 minutes at 43 degrees which is good for me.
I've stepped up my meditating too.  Feeling really positive about things at the moment.

Friday, 18 May 2012

Perrin Technique and sleep

I've been awake since 4.50am this morning.  The Perrin treatment is definitely affecting my sleep.  I am waking 3 or 4 times every night and waking very early.  The good thing is that when I wake at night I am falling back to sleep quickly and not lying awake for hours as I used to.  This morning I used the time to do a 40 minute meditation to set me up for the day.  I was very tetchy yesterday with everyone.  I am not a tetchy person by nature so I can always use it as a good sign that my body is fatigued.  Everyone is used to it and I hope take no notice of me when I'm like that.  The current bout is a knock on from a trip I took on Wednesday when I drove for one and a quarter hours to one of our local universities with my daughter and some friends.  When we got there the department we were visiting was on the sixth floor.  I had no knowledge of this when we followed the lecturer up the stairs from the second floor.  Four floors later my body is letting me know exactly what it thinks about stairs.  I don't know why I cant do stairs, I think it is something to do with the Postural orthostatic tachycardia syndrome, but I don't know why stairs should effect me so much more than just standing or walking.  Anyway I forgot about it, it was exciting to see the kids in this environment.  I left them there and went back downstairs. Later that morning I went on a tour of the university department and found myself traipsing up the four flights of stairs again.  Foolishly I didn't do anything about it, because I didn't know where we were going I just followed the crowd.  After this my heart rate was right up and stayed there for several hours.  I did nothing for the afternoon and then drove home which I managed pretty well, but once back I was good for nothing.  Ant came in after I'd been sat for about an hour and took my boots off for me, it was just too much effort to do it myself.
The interesting thing about how my body reacted at the university is that normally after that sort of level of activity I would have a horrible feeling of malaise and just feel rotten, but although my heart rate was right up for several hours the horrible feeling of malaise did not come with it.  Could this be due to the Perrin Technique?  I don't know, but it's the only thing that is different in my routine at the moment.

Saturday, 12 May 2012

The Morning After

I woke at 5.08am this morning, a little early so I led there for a while and got up at about 6.45am.  I felt really good.  Ant can always tell when I'm feeling good as I leap enthusiastically out of bed with "things to do".  And so I did this morning.
My energy levels were pretty good all day, but there were some effects from yesterdays Perrin technique treatment.  My sinuses were really blocked when I woke, but cleared after my first morning treatment and then for a couple of hours I could feel fluid coming down the back of my throat.  After my second self treatment of the day I had a strong bout of nausea.  Nausea is a common side effect and is due to the fact that the liver is having to deal with all the toxins being released into your system.  Perrin recommends Milk Thistle to help combat this, but I'm already taking so many supplements I don't really want to ad any more to the list, instead I am just trying to drink more water.  I had two other bouts of nausea during the day, it just seems to come in waves.  The base of my spine aches due to the spinal twists that I'm doing 4 times a day.  So, these things are all manageable particularly as my energy level has been good today.
I went to see a talk on Mindfulness yesterday, it came as a timely reminder to keep working on my  meditation practise, there are so many benefits.  The speaker Professor Mark Williams touched on the inability of humans to cut off their "fight or flight" response, this resonates with me as my body often feels like it is on full alert.  Even when I think I am relaxed inside my body still feels like it's going at full pelt.  I would like to mentally be able to switch off the fight or flight response.  Mickel therapy aims to do exactly that - to calm down the hypothalamus.  I think Mark Williams is suggesting that mindfulness might help with this.
So, it's 9.39pm now and considering I've been up so long I should probably be feeling tired, but I'm not.  Mustn't push it.

Friday, 11 May 2012

Perrin technique first treatment

Today has been a good day.  I had my first proper Perrin technique treatment this morning.  It went well, I didn't burst into tears the minute I sat down like my previous visit, so that was a good start. 
The treatment took about 50 minutes and consisted of some massage, some sacro-cranial work and some manipulation of the thoracic area of my spine.  We talked through how my self treatment had been going and what responses I'd had to the self treatment.  Raymond Perrin has devised a chart which gives some idea of the length of treatment that might be required on average.  This is based on a score you are given after the first diagnostic appointment.  So, my score is 6 - which is pretty good.  1 is extreme symptoms and completely bed ridden and 10 is normal.  So I'm heading up towards the top of that chart.  Anyway Perrin's chart says if you score 6 the prognosis for length of treatment is 8 to 12 months.  That sounds good to me.  Obviously it doesn't always work for everyone and there are often other factors  that will effect this, but I'm going to follow the treatment to the book and hope everything else is in place.
By the end of today's treatment I was given more exercises to do and increase the number of times I'm doing them through the day, so now I have to do the self treatment 4 times a day.  My Perrin practitioner commented on my cranial pulse in a way that makes me think I could probably do with an appointment with my cranial osteopath who I haven't seen for a while, so I need to organise that.
This evening my back is aching which I guess is only to be expected.  Fatigue set in at around 6pm, but not too bad and I have recovered a little now.
I am going to go to bed and read my new book on mindfulness.
Interested to see how I feel in the morning.