Tedium of 2015 and working on the Now

I can't believe the previous post was back on the 22nd August.  This has been the longest break in all my blogging and I'm not really sure why.  I think that subconsciously I really want this blog to be a positive story of my recovery and actually since my trip to the Royal Neurological hospital back in May (details here), I've found it quite hard to be feeling positive. The last seven months have been a very very gradual working my way back to my pre hospital strength.  I am not there yet.  I now find it hard to do the easy yoga class at the MS therapy centre whereas, I was doing that plus about three quarters of a normal sports centre class in a week for example.  I can do a baseline amount of activity which will get me through the day but any extra seems to have a detrimental effect right now.  Driving what I would call middle distances, so maybe 40 miles plus has become very demanding of energy which is quite restrictive and I have been relying a lot on friends, and Ant of course, for this.  The back end of last year has also seen me dealing with the removal of skin cancer from my right arm, all now removed and clear, and the emergence of some new painful gastro symptoms which fortunately now seem to have subsided.
With everything else, my regular 3 times daily Perrin massages had fallen to the wayside.  I was just massaging every now and then when I felt like it and gradually I began to notice the result of that when with my fatigue I began to get the horrible sickness and heavy feeling that i remember from the early stage of my ME.  I have picked the massages up again and that feeling has gone.  It confirms to me the very important part that Perrin has played for me and acted as a reminder that i must, certainly in my current condition, keep up with the regular massages.
The most annoying of ongoing issues are palpitations which before my hospital visit I had pretty much got rid of.  These now persist, not often as I am consciously not pushing my body physically in any way.  Strangely it has happened 4 times when I have just been sat watching something like a classical concert or speech.  I go very hot, then cold and clammy, my heart rate rises and I just feel unwell.  Neither my body or mind feel stressed at any point immediately prior to this happening.  I would like this to stop please!!!
In November I did go back to the Royal Neurological hospital for my follow up appointment and after a very spiky start to my appointment, it did finish with a really useful session with a specialist POTs nurse who was VERY helpful.

Anyway, all these things are in the past.  I feel the need to have documented them for my own record, but  now I must move on.  I feel positive about the coming year.  I have been reading Practising the Power of Now and find it very useful to remind me of all the things I can do right now.  There are no problems, just situations which either have to be dealt with or accepted.  I intend to do more of both - do what i can to deal with the ongoing situation and be more accepting of what is.

Early goals for this year are to put on a little weight.  I weigh 57 kilos and would like to be 60.  I'd like that extra weight to be muscle : )  On the advice of the POTs nurse I am going to try and increase the size of my calf muscles (currently 34cms on left and 35.5cms on the right)  Hopefully my thighs will benefit too (currently 47.5cms left and 48cms right).  So that is what I am going to be focusing on, along with continuing my Perrin massage and cranial osteopathy, trying to get myself to a point where I'm managing the therapy centre yoga class well and continuing to focus on my diet and eating well.  That should all keep me pretty busy.  Most importantly I'm aiming to have lots of fun with family and friends.

My trip to the Royal hospital of neurology and Neurosurgery for POTs testing

On Thursday morning early I made my way by train to the national hospital for neurology and Neurosurgery in London for two days of testing.  There had been much debate about whether my hubby (Ant) would come with me as I originally thought it would be nice, but later thought that I was being a bit wimpy about it especially as he would have to take two days off work.  There were also practical  things at home to be taken into consideration.  We finally decided that he would stay at home on Thursday and come down on Friday morning to bring me home on the train.

The purpose of the trip was to have some testing done in the autonomic department to get some more specific information about my POTsyndrome and how it might be treated.

On Thursday morning after arrival I was fitted with a 24 hour blood pressure and heart rate monitor. The monitor recorded my data every 20 minutes throughout the day.  In addition I was given a list of physical activities they wanted me to carry out at different times throughout the day, for these, I set the machine off manually to record the data .   I could also manually start the machine if at any time during the day I got any "symptoms".  I didn't write very much in the symptoms column of the diary sheet I was given and on reflection I think this is because after nearly 6 years of this condition  lots of "symptoms" just seem normal to me.
Looking at the list of activities in the morning it didn't seem too difficult a challenge, although there was a fair bit of time management involved.  I had to do things like walk up a flight of stairs, walk briskly for three minutes, lye, sit and stand for different time periods.  The 20 minute readings finally stopped at 10.42pm, well after my normal bed time, at which point  they then changed to hourly until the morning.  At 9.30pm a manual reading after standing for a minute and then climbing a flight of stairs had to be taken.  Once this had been done, the accumulative affect of the days simple activities had caught up with me and I had a few tears on my bed and regretted that Ant wasn't there with me.
After not too bad a night considering the machine was going off every hour I woke at 5am so hadn't had as much sleep as normal.

I was back at the autonomic department for a 9am appointment where I was taken into one of the testing rooms and the machine was removed and my diary handed in.  I had been told by the very kind bio scientist that the mornings testing would take around two hours.
Laying flat on the tilt table, another blood pressure cuff was attached along with some other monitors and a cannula and I then had to perform some tests.  The first was squeezing a pressure pad.  With my left arm I had to squeeze the pad to a certain amount of pressure on a dial in front of me and then hold it there for three minutes, physically quite demanding, but my competitive nature wouldn't let it beat me.  The second test was just deep breathing, that was fine.  Next I had to count back from 490 in sevens.  Quite pleased with how I did on that one : ). The third sounded simple too, I had to take a deep breath and then breathe out long and hard into a tube for 15 seconds.  When I started breathing out though I realised that the tube I was breathing into was in some way pressurized and I was having to blow against that.  It sounds so simple, but I felt so ill, I thought I was going to pass out (I was lying down to do all these tests).  I can't properly explain how it made me feel, I don't think I have experienced anything like it before.  I felt so bad and after this my legs started to tremble in the way they used to when I was first ill and I used to get night time shakes.  We stopped the tests as I knew that if I just let it happen these trembles would travel up my body in waves and then eventually suddenly stop.  This trembling, which normally happens at night, does usually leave me completely physically exhausted however.  This time it was like the trembles were stuck in my thighs, they didn't travel up through my body, so to me they felt stuck.  There were more tests to be done, one which involved clamping my hand and lower arm in a large ice pack and another, a panting exercise to induce hyperventilation.  I knew at this point that I was completely out of control of my body and that I wasn't in a good state to carry on with these tests, particularly as I hadn't even done the tilt table test yet.   Then turmoil set in as I was there in the lab and wanted to do the tests to provide the results, but my body was telling me not to do it.  These days, I spend a lot of time telling myself to listen to what my body's telling me before embarking on any activity, but there and then I was desperate for them to get any info they could.  Looking back now. I wasn't really in any fit state to make a decision about anything.

I rested for a while and then we decided to go straight on with the tilt table test.  Having had this test once before I knew that being tilted to the 60 degree position did not feel good but last time once in position it felt like things settled and it was okay.  This time it felt horrible and then got worse.  My body is getting uncomfortable just thinking about it now.  It was like such a heavy pressure on my head and on my chest.  I tried everything to help myself ,  I tried meditating with a mantra and through breath and through imagining I could hear one of my favorite guided meditations.  I tried visualizing myself enjoying a Roller coaster ride, and then being in my yoga class and in other safe feeling calm places, but my body wouldn't settle.
It was obvious after 5 minutes that things weren't going well and I was asked if I could just last another 5 minutes so that they could take another blood sample at 10 minutes and then I was brought down. My heart rate had gone over 150 beats per minute and I was struggling.  I was upset and in tears, the tilt table test was supposed to last 45 minutes and I had only managed 10 and I hadn't managed the two earlier tests either. I felt like I had failed to provide them with as much data as I could have.  Typing this now, I know I couldn't have done any more and my hope is that the fact I couldn't complete the test is in itself useful data.  The scientist was very kind in trying to reassure me that they had enough information from the data they had.

I felt so rough, I don't really know how I managed to get with Ant back to the railway station.  I was struggling to breathe and talk, my walk was a very slow shuffle and it was at least an hour before I could even tell Ant what had happened.  I went straight to bed when we got home and I've been there for 3 and a half days.  Today I have made it down stairs for a while.  When I stand I feel woosey, off balance and nauseous.  Most of all I am fatigued, and this is the bit people sometimes just don't get, they think I must be feeling tired and want to sleep.  I'M NOT TIRED.  I DO NOT WANT TO SLEEP.  My body is fatigued there is no energy for anything other than the essential.  Typing this is using all the energy I have.  My hands are resting in front of the keyboard and my fingers are moving as little as possible, just applying a downward pressure to the keys is an effort for me right now.  The middle finger on my right hand is trembling as I do it.  I want to finish this blog entry though, because today is International ME awareness day and it's good to raise awareness and for people to know how ME effects someone they know.
I have no idea how long it's going to take me to recover back to my "normal".  Hopefully not too long.  As Ant so wisely and calmly says "It will take as long as it needs to take" and frustrating though it is, this is what we have learnt.  Having ME is like riding a roller coaster of energy.   We are not in control of how fast it travels, how long it hangs at the top or how deep the next plummet might be.  Sometimes, because we don't want to miss out on the fun, we choose to jump out of the car and push it higher or faster than it wants to go and we do that knowing that we will pay for it with a more severe fall on the other side.
On the one hand, I think I was naive about how much the autonomic testing might take out of me, but on the other, I went into it optimistically and positively, believing the benefits of putting myself through it and the data it will give the doctors will make it all worthwhile.   I just really hope that turns out to be the case.

POTs Treatment (Postural Orthostatic Tachycardia Syndrome)

On Tuesday I took a trip to London to attend an appointment at the National Hospital for Neurology and Neurosurgery .  I had been referred by my heart consultant and I was really happy to have this referral as I knew that my heart consultant had got to the point that there was no more he could do for me.  I had naively thought that a hospital of neurology would also be able to help with M.E. as well as the POT syndrome (which I just consider a symptom of my M.E. really).  However the consultant I saw was purely focused on the POTs and made it clear that she was not an ME specialist.  It seems strange to me that when 80% of people who have ME also have POTs, that a POTs doctor wouldn't have a greater knowledge of ME.  They must see lots of people with ME.  There is also the issue that when you have ME a multi faceted condition, surely it is difficult to just isolate one issue and deal with it without taking the other situation into consideration.  One of the non drug treatments for POTs for example is exercise, well there's a reason I need someone who has an understanding of  managing exercise with M.E.  I mentioned for example that I was very interested in the work of Dr Nancy Klimas in the US, who is using a "below anaerobic threshold" exercise programme with her ME patients, but was told that they couldn't help me with that.
So, lets set all that aside and just say that I was hoping for a slightly more all around approach to my current condition.  What I in fact got was a very detailed and specialist approach to the POTs which regardless of the above paragraph, I am very grateful for.  I had known for example that I needed to increase my fluid intake, but couldn't find out any specifics on by how much and I knew I had to increase my salt intake, but couldn't find out by how much, so all this verbal information was very useful.
I had a very thorough physical examination where I was checked for hyper mobility in my joints.  It appears only my elbows are hyper mobile and I scored a low 2 out of 9 in that test, which is good and all my reflex reactions were tested and were all normal.  So, physically I did well and the doctor said that was good and a little unusual.  My heart rate was 107 sitting and only rose to 112 on standing - this is where the Ivabradine drug has really helped me. 
The doctor took a detailed history and asked me if I wanted to attend a support group which i declined at this stage thinking it not practical with the travelling involved, but I might take them up on that at a later date.
They are going to give my autonomic system a good check over, with two days of testing  including another tilt table test, 24 hour blood pressure and heart rate and blood tests.  There are different types and causes of POTs and when they have all this information they will be able to then offer a more accurate treatment programme.  I was given the choice of travelling up to the hospital on two consecutive days or staying over.
So, I came away a little disappointed that I wasn't going to get any specialist ME help, but happy that if they can treat the POTs and ease the symptoms, that should make everything in general easier.
Whilst I wait for my appointment to come through I need to increase my fluid intake to 2 to 2.5 litres, take salt with every meal up to a full teaspoon a day and try and continue with any exercise I can do, but specifically, recumbent cycling and swimming - both very good for POTs and my yoga practice.  The idea with exercise is that you build good strong muscles in the legs which then squeeze and support the blood vessels in the legs to help pump the blood back up.

Energy wise, it's not been a great couple of weeks, I still haven't been able to do the normal yoga class but am enjoying my yoga at the therapy centre.  It has also been a time of emotional stress, both good and bad, which always has an impact physically.  I need to focus more on pacing and continue with tightening my other protocols until my reserves are a little stronger and then keep going with more of the same!