Graded Exercise therapy and ME / CFS

Yesterday I went to see my Perrin therapist.  She was pleased to see that I was doing well, it had been 6 weeks since my last visit and that has been a pretty good time in general. She believes that the recumbent cycling I have been doing with no resistance has been flushing through my thighs and getting the lymphatics moving.  It was also nice to hear her say that my thoracic spine area felt spongey, which means it has some movement in it, whereas in the past it has been rigid with no flexibility, this has to be down to the two yoga classes I'm managing a week.
So, my therapist pointed out that what I'm effectively doing is Graded Exercise Therapy (GET) and I guess it is, but here's the nub...if I had been asked to attempt what I'm doing now 4, 3 or even 2 years ago, it would have thrown my body into a spin.  At this point, I am the strongest I have been in my recovery, I know pretty much what my body can and can't handle activity wise.  I know what sets off my nervous system and I know when I need to use coping strategies to try and calm it.  Don't get me wrong, I am in no way in control of my body, but I am much more able to manage it.  Attempting to do this sort of exercise when you're not first this strong would be absolutely the wrong thing to do and I think that's the problem with GET being one of the main treatments suggested by the NICE Guidelines for ME/CFS.  Attempting GET before the body is ready is  going to make things worse.  However,  if you also have Postural Orthostatic Tachycardia Syndrome (POTs), which many ME sufferrers do (often unknowingly),once the body is strong enough to tolerate some form of light exercise it can be helpful.  Dr Peter Rowe MD of John Hopkins Medical Centre has been doing lots of research in this area.  http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing/orthostatic-intolerance-and-cfs-resources
So, the usual has happenned, as I have been feeling gradually stronger, I have been relaxing my regime - wrong thing to do! - and as Christmas approaches the main thing I've released on is my intake of refined sugar.  Yesterday was a bad day for this.  I'm not going to beat myself up over it, but, today I am going to pull the reins in again on this particular facet of my regime because I do feel it has played an important part in helping me with my recovery recently.  My next Christmas "event" is not for another 6 days, so I'm going to be pretty careful with sugar until then.  The positive thing is that since I've reduced my sugar intake my tastes have changed substatially and I now really don't want anything too sweet.  I'm going in search of a no sugar gluten free mince pie recipe as they are normally a staple in our house at this time of year, but right now the thought of biting into one doesn't appeal at all.  If you have any sugar free Christmas recipies please share.

Update on Ivabradine for POTs (Postural Orthostatic Tachycardia Syndrome)

I've just read back through my first entry after taking Ivabradine and thought it might be worth a very short update on how I'm feeling about the Ivabradine now.  Back then when I was first taking it, I comment on  the horrible feeling of malaise and heaviness that I got straight after taking it.  I am happy to report that this is no longer the case.  I fact next time I see my cardiologist, I am going to have to admit to him that the drug he nagged me to try for a year before I did is actually helping!  It is definitely bringing down my resting heart rate and controlling it at the higher end which is allowing me to be more active I think.  It's making a difference to the standing/sitting/bending down scenarios, so not an instant 20 or 30 heart beat rise on standing from sitting for example.  In my yoga class I am able (to some extent) to participate in sun salutation type moves that require lots of bobbing up and down.  This is something I could not have done before the Ivabradine.  However, just as with the pancreatic enzymes I used to take, as soon as I have any sort of relapse I seem to loose the effects of the drugs and my body just does it's own thing.
Two more things to note this morning.  After going 7 months without a period, I've now had two within 30 days of each other??!!!!  This has tied in with an extraordinary period of good sleep this week.  I have had three or four days in a row where I slept for 6 hours straight without waking, this is most unusual, my normal pattern was to wake at about 1.30 and 4.30am.  I'm dreaming lots too.
I haven't made it to physio at the therapy centre this week and I now really notice how the hardness in my thigh muscles gathers gradually if I don't do the cycling exercises.  I need to make sure I prioritise this to fit it in every week.  I have been letting it go for other things that need doing, but I am now convinced it is helping and definitely makes a difference.  I need to try and fit it in, but it's that old story of balancing out what can and should be done with the energy and time available.

Solve CFS Biobank

Not such a good day today.  Spending the morning in bed in a hope to regain a little energy and strength in my legs.  Hopeful as ever I'm still thinking about the things I might do this afternoon, but realistically I'm writing today off so that I might be able to see my daughter play in a concert at the local theatre this evening.

Today is annual log delivery day and I'm sad that I won't be able to help out with that - it's a bit of an annual marker for me as to how I'm doing, if it had been last weekend or the weekend before especially, I would have been fine.  Fortunately, DS1 is getting older now and more able to help with moving and stacking the logs, but it's one of those jobs that's so much easier and more fun to do if we can do it as a family.

I had an email today from the Solve CFS Biobank which I am participating in.  If you have ME I would encourage you to sign up to this Biobank which will provide samples for future ME research.  If you don't have ME I would also encourage you to sign up as they need healthy controls to compare our blood with.  The website is here: http://solvecfs.org/solvecfs-biobank/

Working out with ME

I said in my previous post that this post would be about what I have been doing with my extra energy.  Well the first thing is that I've been enjoying it and not taking it for granted.  I've been very conscious and thankful for the added boost that I've been enjoying.
This energy boost has enabled me to put a few things into my week that I haven't been able to do previously.  The first thing I added was an extra yoga class, not only an extra class, but a normal class at a normal run of the mill sports centre.  Up until this point all my yoga had been at the local MS therapy centre.  A gentle class consisting only of poses done lying, sitting or kneeling.  Joining in with a normal yoga class has been very enjoyable. I still can't manage the whole class, I modify quite a lot and I dip out of some all together, but generally speaking, I think I do pretty well.  I still do my MS class too, so that's two yoga classes a week.
I also now go into the MS therapy centre's gym with the physio there once a week and spend some time on the exercise bike.  I cycle for 10 minutes going forward and for 5 minutes going backwards.  I keep under 60 revs per minute and I wear my heart rate monitor to make sure I'm not pushing my heart rate up and triggering symptoms - it normally sits at around 85bpm whilst I'm on the bike.  The cycling has been fantastic as it has somehow managed to help with the issue I was having in my thigh muscles where they were tensing up and being sore and solid.  The cycling motion is having a relieving effect on them which is wonderful.
I'm taking a great deal of pleasure being back in sports gear again 👟 even if it is only gentle compared to what I previously did, it still feels great and I'm enjoying it.
Sadly this week I have had a little slide backwards, hardly surprising with all the things we've had going on in the house.  It's been a very busy time and I have payed the price somewhat.  The stiffness in my joints has returned and the internal agitation in my system has been present, but worst of all my sleep pattern which had been excellent in recent months has been disrupted and for the last two nights I've found myself lying awake for hours in the early morning unable to get back to sleep.  I thought those days had passed.  Tomorrow I'm going to see my cranial osteopath.  His visits do often help my sleep, so I'm hoping he can work his magic tomorrow .

Sugar and ME/CFS symptoms

Silence on the blog is generally a sign of one of two things:
1)  Feeling so bad that I don't have the energy or wherewith all to type
2)  Things going so well I don't feel the need or am too busy catching up with other things.
I'm pleased to report that in this instance it is a case of the second - feeling pretty good and busy doing other things : )
I've been having a pretty good time energy wise over recent months.  The fact that I wear a fitbit means that this is just not anecdotal or spurious self reporting, I actually have the figures to prove it.  I very rarely look at my fitbit stats on the Fitbit website, normally just noting my daily totals mentally at the end of a day and reading my weekly stats sheet when it comes through by e-mail on a Monday morning.  Last week however I did take a look at the website where it is possible to see your historic figures represented graphically.  It was quite striking that in June of this year my step count took a definite "blip" upwards, where they have managed to stay since.
This positive blip is very welcome as it follows on from a long period of feeling that I was going backwards that seemed to last from  the end of last summer (2013) through to this Spring.  It's easy when you are in the midst of such a "down" period on the roller coaster to think that it's not going to change again and you are fighting a losing battle.  Who knows what makes the change from backwards to forwards, not me for sure.  I have just carried on trying to do the right things and hoping they would make the difference.  Two specific things spring to mind about this latest phase though.  May/June was a time when I was taking laxatives for a while.  They made me feel awful, I felt like they were completely stripping my body of any goodness, but I do wonder if they were taking some badness with them too!  When I stopped taking them and my body was getting back to normal, that was when I felt a boost in my physical well being.  Maybe it was just the contrast with how bad I'd felt whilst taking them, but it definitely felt better.  It does make me think about the theory that our gut has bad bacteria in it and the digestion process isn't working properly more info about this theory.  Maybe the laxatives helped strip out the bad bacteria and start again with a clean slate as it were.  That's what it felt like.
The other thing that may have had a difference is the fact that I have been on a low sugar diet since earlier this year and I wonder if that is now starting to have some effect.  I really think that the low sugar diet has made a difference to my hormones.  My menopausal hot flushes have stopped since I reduced my sugar intake.  I am trying to keep my sugar intake as low as possible and that includes natural sugars from fruit.  So I am replacing my previous fruit intake with more vegetables and savoury snacks.  The daily recommended intake of sugar for women is 50 grammes.  If you're not keeping a check on it, it's easy to exceed 50gms.  If I'm eating anything that comes wrapped or in a packet, I'm looking for it to have 5 grammes or less of sugar per 100 grammes, that's pretty low.  I'm not being over the top about it, today we had a big family Sunday lunch with the grandparents and I baked a desert for everyone and had a piece myself, but this is the exception these days and not the norm.  In fact one of the interesting things about doing this is noticing just how quickly your tastes change.  I now find many things I used to eat just far too sweet for me these days.

So these are my two theories as to what may have given me my recent boost, it's probably a combination of both.  In my next blog post I'm going to detail what I've been doing with all my extra energy : )

ME/CFS charity donations

Last New Year I set myself the target of trying to raise some money towards one of the very worthy ME charities.  I didn't manage it last year, but I am happy to say that today I have sent £274 to Invest in ME's Rituximab trial research project and $452 to Dr Ian Lipkins Microbiome research project.
This money came from  a Charity Curry Night which raised £548 and it feels really good to be able to send this money off to these really important pieces of research.  I hope to be able to do more later in the year.   The Rituximab trial has now reached it's initial target for the early stages of the project to begin.  Dr Lipkin's still has a very long way to go.  They are trying to raise $1,000,000 and have just passed the $100,000 mark.

Muscle acid and ME/CFS

Yesterday I had my second "go" at the "normal" yoga class.  Whereas last week I spent the whole lesson smiling because I couldn't believe I was taking part and managing so well, this week my face was more serious,  showing much more earnest concentration.  I'm not sure this was a good thing as a couple of times I had to check myself from pushing and trying too hard.  I can't help that, it's in my nature and something that I have struggled to deal with mentally - the having to hold back and pace oneself.  I enjoyed the class and managed about three quarters of the poses.  I was most happy with the fact that there was quite a lot of bobbing up and down from front lying, to forward bends on the feet to completely upright and then down again.  Normally this sort of activity induces nausea and post exertional malaise due to Orthostatic Intolerance (OI), but yesterday I coped well.  I didn't manage it all, but, gave it a really good go.  So, maybe the Ivabradine that I'm taking for the OI is having some effect.  Unfortunately, the battery had run out on my heart rate monitor so I  was unable to check what was happening with my heart rate whilst I was doing all this bobbing up and down.

Talking of monitors, I have decided not to wear my fitbit this week, I did 47,000 steps last week another good one for me.  In fact, I'm not sure how I'm managing that as my thigh muscles are so sore all the time, sometimes my knees too.  Most of the time I am ignoring it and Ant kindly massages the knots out of them every morning.  I am convinced this discomfort is acid build up in the muscles, this is an interesting article about that  In my case, exercise of the thigh muscles seems to mean walking!  I am going to buy some beetroot juice today as I have read that drinking it helps to remove acid from muscles.  Ant has also been encouraging me to breathe more deeply as the pain you feel in your muscles can be caused not by the acid but by accumulating too many hydrogen ions in the muscle, getting more oxygen in and more carbon dioxide out can help with this.  Anyway, my muscles are struggling with activity and it's difficult to know what to do for the best - push through or rest them.  At the moment i'm pushing through, because if I wait for them to be "OK" i'll be waiting a long time and not doing anything.  Back to the Fitbit, I've been wearing it everyday for 18 months and I love it, I just thought I'd give it and me a week off!

Yoga and ME CFS

Today I am feeling very pleased with myself.  Once a week I attend a yoga class at a therapy centre.   It's  a very gentle 45 minute class where all the poses are either lying down or seated.  I've been coping pretty well with the class so today I tried a normal yoga class.  It was about one hour, fifteen minutes long and with my usual yoga teacher who knows me pretty well by now.  I smiled my way through the whole class, I was so pleased to be joining in and managing so well.  There were things I couldn't do and things I chose not to do as I thought they would be too much for my system, but there was lots that I could do and I really enjoyed it.  At the end of the class both my teacher and I were so surprised by how much I had managed.  Now I have to wait until tomorrow or Thursday to see how my body reacts.
There were two reasons for wanting to try an extra yoga class, firstly, I just want to do some exercise and yoga is about all I can manage right now.  Secondly, I have been finding out more about how people have improved their Orthostatic intolerance by being able to exercise.  This is obviously difficult for someone with ME, but every tiny little increase I can make will help.

Meditation retreat and night tremors

I've been a little remiss when it comes to blogging lately, but today I feel it necessary to put fingers to keyboard to document that on Tuesday night I had one of those horrible night time tremors.  I can't remember the last time this happened - which is a good thing, it was obviously a long time ago.  These occurrences were common at the start of my illness.  I would go to bed and then wake up at about 1am ish with my heart racing, feeling hot and clammy but with cold extremities  and an urge to empty my bladder and bowel, once I've done that and gone back to bed my body starts to tremble uncontrollably, sometimes in very noticeable waves.  When it passes it's like my body is released from something's grasp and relaxes, but then I cannot sleep.  The next morning my body is weak.  And so it was on Tuesday night.  I got up just thinking I needed the bathroom, but noticed my heart racing like mad.  When I got into bed I just recognized all the signs and knew what was coming.  This was upsetting as it hadn't happened for so long that I thought I had got over this sort of reaction altogether.  I tried to control my breathing to see if that would stave it off, but eventually I just tried to relax into it and let it happen and take it's course.  Ant was fab (again) he is very familiar with this scenario and knows just what to do, holding me firmly as I shake.  Last night it was just the bottom half of my body and built up very slowly from almost externally unnoticeable tremors which gradually grew in strength and then, when it had done what it needed, it abated and was gone.
The cause of this little hiccup is unproven, but my best suspicion is that I jarred my body when moving very quickly and suddenly to avoid a plastic cricket ball that was heading towards me at speed.  I think that the sudden burst of movement involved upset my system somehow.  Anyway, I woke up very weak yesterday and forced myself to go off to the therapy center for my regular yoga session.  The session felt good, but the drive there and back was very hard work.  I was in bed by 5.30pm and slept much better last night.  Today I felt a bit better when I woke but have had to be very careful with my activity and minimize as much as possible.

Since my last blog post, I've had a lovely few weeks.  Sadly the boost in energy that was mentioned in my previous posts has not hung around.  It lasted 3 weeks and two days and gave me a real glimpse of how things could be.  The most annoying thing of all is that I have no idea what caused that little energetic boost.   I'm still doing all the same things now as I was doing then, but don't have the same levels of energy.  I'm back to my 5000 comfortable steps a day.

At the end of June I attended a 6 day meditation retreat at The Barn in Totnes, Devon. It was so rejuvenating - not physically, but mentally and emotionally.  I found it a very valuable experience.  Two hours meditation a day broken into three 40 minute sessions, visiting speakers, lots of reading from a well stocked library, good food and some therapeutic gardening tasks.  I really enjoyed it and although I felt guilty taking myself off there for a week and leaving the family at home, I have now convinced myself that sometimes we do just need to prioritize time to nurture ourselves.  Strangely, since I got back my meditation practice hasn't been as good as before I went on retreat!

Another big day

I checked out my fitbit yesterday and it is tracking steps properly, I just needed to make sure.  Today the fitbit clocked up an amazing 11,490 steps!  These steps were the result of taking "the eldest one" to an open day at the university of Birmingham and walking all over the campus all day long.
I am in bed and exhausted, but exhausted in a good way.  A smile came over me earlier today when I realised I was actually "sleepy" tired.  Properly tired, not fatigued.  I can probably count on one hand the number of times I have felt like that since the start of my ME nearly 5 years ago.  It is the activity of the day that has made me tired.
Yet again today my leg muscles and hip joints have been crying out to me and have at some points been quite painful.  Climbing stairs was particularly hard, but at no time did I feel ill.
Even after all that activity, I managed to come home and read a bedtime story to the littlest one.  This might not sound like such a big deal, but on previous days (many of them) when I have been fatigued, reading a bed time story has been beyond me.  It might be difficult for someone without ME to understand the effort involved in just reading out loud.  Those who have experienced this type of fatigue will understand what is required to first read and then speak the words out loud when your body feels it has no energy to do so.  It has been too much, but today even after my 11,490 steps and eating dinner and managing to hold a conversation at the dinner table (often also not possible at the end of a long day), I still managed -and enjoyed- reading the bedtime story.
In addition, The busyness of the morning meant I forgot to take my heart medicine and I checked my heart rate throughout this busy day to find to my surprise that it was actually okay.  Normally one of the first symptoms of fatigue is my heart rate rising and today that didn't happen.
I find myself in some state of disbelief about what's happening with my body at the moment.  I'm still part waiting for a fall from these heady heights.  It has been 3 weeks and a day now.
Tomorrow I go on a well timed six day meditation retreat.

Still Going..

I'm beginning to wonder if my FITBIT is actually working properly!  My current rolling 7 day steps total is just over 51,000 steps.  On Tuesday I was in Wimbledon - hard work with the travelling.  Yesterday was supposed to be a quiet recovery day but I managed to clock up over 8000 steps and today I have 9137.
I really don't know what's going on or what to do for the best.  My back has sorted itself out, but my thighs are complaining about all this use they are getting, but I don't feel ill.  Don't get me wrong, I'm not about to jog around the block, but something is different.
I think it's a good thing my meditation retreat is in 3 days as this will force me to slow down and let my body have a rest and see how it feels.  I am actually thinking that these figures are so unusual that my fitbit might not be clocking them up correctly, I hope that's not the case.  I might have to do some testing tomorrow.

Recovery time needed.

For the past two and a half weeks my body has done everything I've asked of it.  Yesterday however was just a push too far.  I had a wonderful day in Wimbledon, perfect weather, perfect tennis and perfect company (you know who you are), but I made a foolish schoolgirl error by thinking I could walk from the tube station to the courts wearing a backpack.  I am not yet invincible it seems.
I made it to the courts, but by the time we got there my legs were crying out to me and I had to sit down.  Then the heat got to me and I had to seek shelter.  Once we were in our centre court seats and preparing to watch Rafa et al things felt better.
Besides the walk carrying the heavy lunch bag, it was noticeable that standing in slow moving queues and standing on the tube trains was hardest, this will be due to Orthostatic intolerance, whilst I was sat watching the matches though my heart rate was good yesterday.
Travel disruptions on the way home made the journey home harder than was necessary.
It was a great day, but today I can feel that internal fragility and agitation that I associate with my particular ME symptoms..  My body doesn't want to get out of bed this morning and my thighs are "burning".  I will try and have as easy a day as possible and give myself some recovery time.  I could do with my 6 day meditation retreat starting today really, but I only have 4 days to wait.
Was it worth it, would I do it all again tomorrow?....er, YES.
I feel an essay title coming on:
If you have ME and find you have energy, do you do nothing and let that energy work on repairing your body or do you go out there and do all those things you want/love to do?  Discuss.

Can my body keep up?

"How are you doing?" somebody who hadn't seen me since March asked yesterday "Good"  I heard myself saying "Very Good" and this time I meant it.  It wasn't an empty "fine thanks" or "okay", my normal, - you don't really want to know - answers.  Yesterday was my 16th day in a row of feeling good.

Today is a little different, I still "feel" well, I don't feel ill, but my body feels like it's struggling to keep up.  My back is aching like mad and has been since last Wednesday, but it was a bit worse this morning.  I'm not sure what's caused that.  My thigh muscles are crying out to me and my knees aching.  For some reason my thigh muscles keep completely tightening up.  My physio and Ant have been massaging them for me at regular intervals - which is painful, but makes it better.  The tight muscles have the knock on effect of making my knees ache.  It feels like my body is falling apart, but I feel well - a strange contradiction, but I can understand after almost five years of not being able to do very much, for the past two weeks I have been asking a lot more of my body and parts of it are complaining!  I'm hoping that what I'm feeling here is deconditioning, but I don't know that, it could be that by pushing through I'm going to make things worse.  With this slightly in mind I have tried to have an easier day today, lots of sitting around in the garden reading books.  I've still managed to clock up 5400 steps, but that is a step down from my current 6884 daily average.

Using the Fitbit with ME

Got my  official weekly FITBIT stats by email this morning and this weeks figure is: 52,190 steps, that's an average of 7,456 steps a day.  Interestingly my highest day of the week was Thursday, before I went away to the beach.  I did 9,680 that day.  To put those figures into context, an average week for me is around 35,000 steps and the recommended number of steps that a healthy person should aim for is 10,000 steps a day.  I am pleased and in some state of disbelief.  I feel I am subconsciously waiting for the crash now, but I am trying to put that out of mind and retain a positive but sensible attitude.
The Fitbit is great for monitoring this sort of activity, I knew I was doing well, but I am the sort of person who likes facts and figures and the Fitbit provides these well.  I am going to start focusing on another aspect of the fitbits information a bit more now and that is the breakdown of how many minutes I spend sedintary, lightly active, fairly active or very active - it would be great to see some movement in those figures.

Great week of energy

It's been a really great week for me.  I started feeling good a week ago Friday and today is Monday! That is nine consecutive days of feeling good.  I can't remember the last time that happenned, but it certainly hasn't happenned since last summer, so this is huge. What makes this even more remarkable is that I haven't just been plodding around the house and garden having "baseline" days, I have actually been putting my body through quite a hard time.  I did have a couple of evenings last week where by 7pm I was fatigued and needed to do nothing - eat and go to bed - , but by the morning I was fine again.

 My 7 day rolling steps figure at the moment is 48,918.  My normal baseline is 5000 steps a day which would make my normal 7 day rolling figure around 35,000, so that's a big increase over a week. That figure has been pushed up by a weekend trip to the beach, where it was a long walk to the car, toilets, ice cream shop and sea! Not only lots of walking, but lots of walking on sand - not the easiest. As we've only just got back from the wekend I guess I could still get my delayed post exertional malaise tomorrow or Wednesday, I'll have to wait and see. Even if I do, the amount i'd done even before the weekend was much more than I have been doing recently and I managed it well.

 So, I guess the question is, what has made the difference? I wish I knew. Could it just be a cummulative effect of all the measures I've been putting in place finally paying off? Could it be that I'm having a length of time where my hormones are all settled? I'm eating well, but then I normally do. I'm not sleeping any better, still waking in the night and early in the morning. I'm meditating when I can and using mantras alot, alot more than I have in the past. I can't put my finger on anything in particular. If anything if been taking less supplements than I usually do, inspired by David Agnus's book "The End of Illness" to try and get all my nutritional goodness from my food.

 Trying not to overdo it today, but coming back from a weekend away means there is lots to be done. I've showered, unpacked, done 2 lots of washing so far, organised some school work for my son and filled in a visa application, been to the supermarket to get food in and made lunch, so my quiet day at home hasn't really panned out that way yet.

Feeling good and reading

Yay!  I feel good!  This is day 3 now of feeling good and it's happening over a weekend : )
I have no idea why, but I'm just going to enjoy it.  I did 7700 steps on Friday and had quite a late night for me (11pm), felt fine, in fact good, yesterday and then expected to wake up feeling fatigued this morning, but it hasn't happened.  I have been to the supermarket, had a shower, prepared some food and tidied up a little bit all by 12pm.  Ready for a good sit down now, but that's ok.
I'm going to try and fit an extra yoga class in this week if I can.  One good thing is that I'm managing to do a bit more reading and I am reading some very interesting books right now:

1. Get The Life You Love Now - Phil Parker.  I'm reading this one because Phil Parker is the chap who devised The Lightening Process and I thought it might give an insight into the process and it does.  The beginning of the book where he talks about retraining the neurons in the brain is very interesting.
2. Anatomy of the Spirit - Caroline Myss.  Only a short way into this one.  It is about the interconnectedness of mind, body and spirit an idea of which I am already a convert.  The cover says that it is about taking responsibility for our health and our healing.
3. The End of Illness - Dr David B. Agus.  I'm in two minds about this book,  not sure what I think of it yet, so i'll reserve judgement until I've finished it.

I am enjoying reading again.  My brain seems capable right now.

Rebuilding again

If you had spoken to me in the middle of last week and asked how I was doing, I would have said, and indeed did say to several people that i was doing ok, infact i was on the way back up again.  I felt I had turned a corner and was feeling much stronger than I had done for a while.  So, why is it that here I am on Monday having had another weekend of very low energy levels?  Friday wasn't good and I spent most of Saturday in bed so that I might have enough energy to go out with friends in the evening.  I did go out, but didn't  really feel I contributed very much to the evening.
Here I am again on Friday, probably had the worst week I've had for a very long time.  There is a sort of explanation, I've been taking laxatives for the last week and a half and the process seems to have zapped any energy I might have had.  I have been sooooo fatigued this week.  My everyday chores have been beyond me.  The thought of taking a shower this morning was exhausting, but I knew I really had to do it today as I'd already avoided it for a couple of days.  I feel like I've been thrown back a couple of years.  So I have decided not to take the laxatives from today and try and build myself back up again.  I felt I was doing so well at the start of last week before all this happened.
It's another day doing as little as possible in the hope I will have enough energy to go to a BBQ we have been invited to tonight.  I will get there if I can - meeting up with friends is good therapy!
Today the Invest in ME research conference is happening in London.  Researchers from 9 different countries converging to discuss the latest advances.  I look forward to purchasing the DVD of the event to see what's been going on and what is planned.www.investinme.org

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.

ME /CFS self preservation

It's so hard to put yourself first when you have a family at home, but it's so necessary sometimes.  As a mother I can't bear the thought that my children might miss out on something because I am not physically capable of making it happen for them. Today, I was busy all day, including a lot of driving.        When I did get home at about 3pm I put Ben in the bath as he was covered in mud head to toe after a day at forest school - his mud caked clothes are still in the back of the car as I just couldn't face dealing with them!  I washed his hair and made sure he was warm and cosy with a hot drink.  Then I turned my attentions to the kitchen and the havoc that was left after breakfast and lunch, then to what we were going to have for dinner.  By four thirty I was done for.  I managed to serve up a bad meal and then retired to the sofa.  I really should have gone to bed, but I didn't want another day to end at with bed at 7pm.  Somehow it feels more normal to collapse on the sofa at 7, some well people probably do that.  So I made it to 8.30 in front of a tv that was blaring and grating against my nervous system, trying to be normal, before giving in to the call of the bed.  I'm here now about to search online for a retreat for myself.  The world is to noisy and I can't focus at the moment.  I know that whilst I'm at home I won't put my needs first, there is always something to do and I need to get away.  A chance to refocus and do what I need to do for me.

Phil Parker, the Lightening Process and Positive Thinking

Over three weeks since my previous post and nothing much has changed.  I have no excess energy and in particular my legs are struggling, stairs are a particular strain.  I've started getting pains  in my thighs and knees.  My thighs are complaining if I sit for too long.  These are new symptoms which have been concerning for me.  It worries me that things seem to be going backwards right now and not forwards.  It has been over 4 and a half years now and I feel like my ME is entering a "new Phase" one that I'm not particularly happy with.
 So, what to do?
I have felt myself struggling mentally with this physical deteriation and I recognise that this is something I need to get on top of.  In an attempt to address this I have started reading a book by Phil Parker, inventor of The Lightening Process   Now I understand that there is much scepticism around the Lightening Process and it's effects on ME patients.  How can a psychological process claim to fix what we know and scientific evidence now proves to be a physical illness?  See this
I guess your response to that question depends on how far you believe the mind and body are interconnected and interdependent.
I'm not about to rush off and do the Lightening Process - although I won't rule that out, because like most, I will try anything at some point - but I do need to address my current thoughts of "this isn't ever going to go away, this is it now" which I find myself thinking more and more frequently
 these days.
The book is called "Get the life you love now" and is not specifically for ME patients, but is very useful for pointing you back onto the road of positive thinking.  I've always been very good at taking responsibility for my recovery and knowing that any actions to change the current situation need to come from me, but this book is just helping remind me of the importance of positivity, and how to pull myself back down that track and believe that I can get better.
One of the things the book has made me think about is what things are getting in the way of my positivity.  Having given this lots of thought one of things that comes to mind is my current need for some people to acknowledge and recognise my illness.  Don't get me wrong now, this is not people close to me, believe me, they know and recognise the impact this has on my everyday life, it's those on the periphery.  You know the sort of thing, those that think I'm a bit tired, that I'm just into quirky medicine and diets and don't understand the desperation behind why I am willing to try anything.  They might think I'm being a bit over the top about insisting that I'm getting home to bed at a certain time for example.  These are the people who are not there and do not see the after effects of certain activities for me.  I guess with these people I might try and spend a bit more time telling them about how things are going and how I'm feeling or try and explain why I won't do something.  Actually when I'm doing this I'm just reinforcing how bad I might be feeling.  Every time I tell someone how things are, I'm also telling my own brain how things are and that's not good.
Why do I even care?  Why do I care whether these people understand or not.  It shouldn't matter to me, I don't want it to matter to me.  What they think, whether they believe in or understand ME is not going to make any difference to my recovery.  This then is an area where I can change my behaviour and thinking and stop reinforcing negativity.

Dr Mukherjee, menopause and ME

Yesterday was a long day.  I travelled all the way to The Royal Salford Hospital in Manchester (4 and a half hours each way!) to see Dr Annice Mukherjee.  This Dr had been brought to my attention by my Perrin Therapist who had heard her speak at this years Perrin Conference.  Dr Mukherjee is an endocrinologist who has a special interest in ME and as I have been having lots of menopausal symptoms recently I thought she might be a good person to speak to.  As I sat in the waiting room I wondered whether the trip was going to be worthwhile.  I know there is no cure that this doctor (or any) can offer, but I do realise that looking at all the pieces of this M.E. jigsaw is a useful exercise and seeking out information from those in the know is adding more pieces and this is what I was hoping to gain from my visit.

We talked through the history of my case and generally about how it had progressed and what current treatments/supplements I am using and just built up a big picture of the situation.  Apparently, it is very common for menopausal symptoms to hit  women with ME and throw the managing of ME symptoms off balance and further effect their energy levels.  So, she has recommended a supplement called Promensil Red Clover, which contains naturally occurring plant oestrogen's.  This will hopefully ease off the peri-menopausal symptoms and in turn even out my ME again.  Her second recommendation was to take some iodine.  Iodine helps to boost the thyroid and will hopefully bring my TSH levels down - she has seen this in other women in my situation, so that would be good.  The third recommendation was to pull back a bit on Dr Myhills supplements and move to only taking daily recommended doses rather than the rather high levels of some of them I am taking at present. I feel they have done well in helping to build me up over the previous 3 years, but now I'm going to let some of them go.

Before I left they took lots of blood in order to do some thorough testing.  I get the impression Dr Mukherjee will leave no stone unturned.  She was very generous with her time and very informative and I did feel that the long trip had been very worthwhile.

Dr Mukherjee has a website www.fatiguewise.co.uk 

I particularly liked her clear, caring and research led style.  Yesterday reminded me how important it is for us all to take responsibility for our own well being as much as possible and seeking out those who might be able to help is a part of that.  We are lucky that we have an NHS where, if you have a referral,  you can request to see any doctor based anywhere in the country (as I understand it) and I am lucky enough to have a GP who was willing to refer me.

Ivabradine and ME crash

I've been taking the Ivabradine to help with Orthostatic Intolerance for over a month now.  It has undoubtably had an effect on my heart rate which is great, if I am sitting my HR can go down to the mid 70's now and is quite often in the low 80's.  When I stand it slowly rises to low then mid 90's  but not over 100 (these are generalisations).  I was interested to see then what happens when I experience a crash with my ME symptoms and for the purposes of research obviously my body kindly let that happen this weekend!

It was triggered by a meal out with friends on Friday night although I have to acknowledge that the week leading up to Friday had been pretty stressful, visiting my mum in hospital after she had had surgery.  Anyway it was 11pm before I got into bed on Friday and I woke Saturday morning feeling like I had drunk 3 bottles of wine the night before not the 2 glasses of bottled water I had actually consumed.  In regards to the ivabradine, what I noticed was very similar to the pancreatic enzymes I have taken - when my body is doing well, the medication has the desired effect, but when I crash the medication seems to have little effect.  My base line heart rate whilst sitting went up and was high, although there still did seem to be some control over it when I stood, it didn't go as high as it did pre-medication.

The other thing I have noticed over the last month with the Ivabradine is that I am getting  palpitations again, something I haven't really suffered with lately.  They are not nasty, fast palpitations, they are slow and the best way I can describe them is empty or like echos, a hollow feeling in my chest.

My heart rate is definitely down and that's a good thing, but I can't actually say that I am feeling any better as a result of taking the pills YET.  By Wednesday I felt I was starting to recover from the weekends crash - I had such weakness in my thighs which finally went on Wednesday - so now I'm on the way up again and we'll see how it goes.  The theory is that reducing the heart rate allows you to tolerate light exercise and that being able to exercise will help the POTsyndrome.  Is anyone else out there taking Ivabradine for their ME/CFS?

The fustration of ME overwhelms me

Yesterday was not a great day.  I got up and on autopilot left the house at 7.10am to take DD1 to her school bus, by the time I got back I realised that all was not well and wondered actually how I had managed the driving.  Fortunately nothing major was planned for the day.  Ben and I sat in the office whilst he did his school work, but really all I wanted to do was lie down.  When we'd finished I made him  some lunch and we sat on the sofa for the rest of the afternoon and watched two films.  It was during this time that I struggled.  I watched Ben on the sofa next to me, a healthy 8 year old boy, adopting the position and demeanor of his ill 47 year old mother and just thought this is not right.  For the first time EVER I actually thought he might be better off at school than being home schooled.  This is a sign of how low I had slipped mentally.  There's no way when I'm feeling good that I think that is the right place for him.  At home he is learning well and in advance of his peers in most subjects.  He has good home educated friends who he sees regularly and other outside interests - today he is off at forest school which he wouldn't be able to do if he was at school.  But, some days it is so hard for me.  Not often, but, he is dependant on my energy levels and they are just not reliable.
At 4.40pm I dragged myself off the sofa to take Ben to his swimming lesson, it wasn't far away by car (less than 10 mins) and I thought manageable.  I was glad I took him as it did mean he was at least a little active for that half an hour.  When I arrived at the pool as someone I knew asked how I was  -  just in a friendly hello sort of way - I had to stop myself bursting into tears because I felt so awful.
We made it back to the sofa and more video.  When Ant came in from work he had to cook the dinner, collect DD1 from her bus - which takes 40 mins - put Ben to bed and then go and collect DD2 from her evening activity,  that was his evening gone and that makes me feel worse.
I was in bed by 7pm and slept relatively well until 5.00 this morning.
Today I feel much better, drove to the bus without any problems and although my legs are weak and a little trembly on the stairs I actually feel pretty okay...how can that be????  It is soooooo frustrating!
I do feel that my symptoms are still being exasperated by my menstrual cycle and am looking forward to seeing the endocrinologist to hear her thoughts on the matter.
Today, although still a little tearful, mentally I'm in a much better place, but it just goes to show how easy it is for the mind to follow when the body is weak.  I read something on twitter yesterday that made me smile.  It was a Dr talking about how to tell the difference between someone who is depressed and is fatigued and someone with ME.  If you ask them both "if your energy returned to you right now what would you do?"  the depressed person will say they don't know, but the ME patient will reel off a whole long list of things they are just desperate to get on with.  I have so much I want to do, besides the normal, besides the running of the house and the nurturing of my children there is so much more I want to do.  The truth is, when I have a day like yesterday I don't even have the energy to nurture myself.  Today I have a little energy, so I'm going to start with me and then see if I can reach out.

Ivabradine, an update

I have been taking Ivabradine for nearly two weeks now and it's been a bit of a mixed time.  It didn't start off too well, for the first two days about an hour after I started taking it there was a horrible feeling of malaise and a real heaviness in my legs, going upstairs was hard work, it felt like ME symptoms.  On the afternoons of those days though it would clear and felt okay.  That was followed by two and a half days with an almost constant headache.  Not a bad headache, but just there in the background, and then that disappeared and I felt fine.
The Ivabradine has definitely had an impact on my heart rate.  My resting heart rate has now dropped to the late seventies early eighties.  When I stand, I do still get an increase in heart rate, but not the previous thirty beats per minute increase, it goes to early nineties and maybe peaks at 100.  Which is great, because it used to go to 115 or 120.  My body does feel a little calmer internally.
I suppose in the back of my mind I was kind of hoping maybe I didn't have ME at all, and that all my symptoms were down to the POT-syndrome, so once I started taking this medicine all would be well. Sadly, although my heart is calmer the ME is still there.  This was tested this week when I had a late night (11pm) and woke the next morning with a very weak body.  I haven't put my body through any real physical test since starting the Ivabradine, so will be interested to see how it reacts to that.
It appears to be a very short acting drug, there have been a couple of morning where I have woken and my heart rate has been raised, it's like the effects have worn off until I take the next dose, so the Pharmacist has told me to try and take it very regularly at accurate 12 hourly intervals if possible.  Almost two weeks in I'm feeling better about taking it and don't seem to have any negative side effects.
I've had two appointments recently.  On Friday I had a Perrin appointment and felt okay in the afternoon (which is when it normally gets me), but felt rotten the next day.  Fortunately I had a cranial osteopathic appointment that day and that made me feel better and I slept well that night.
Generally sleep is bad at the moment.  I am waking my usual couple of times in the night and managing to go back to sleep well, but then I'm just waking really early in the morning - around about 4.30am at which point I can't go back to sleep...IT'S TOO EARLY!  If it carries on I am going to consider taking something, maybe Valerian or the Melatonin that Dr Myhill recommended, but I really don't want to be adding any further supplements to the list if I can avoid it.
Today I got a phone call from The Royal Salford Hospital saying that I had an appointment with Dr Mukherjee at her ME clinic.  She is an endocrinologist with a special interest in ME so I am going to travel up to Manchester to see her.
I am back on a much more strict Paleo diet.  I have been reading an awful lot about gut microbes, leaking gut and fermenting gut in ME that I feel it's worth giving it another go.  Refined sugar has gone along with most grains and dairy.  I guess it's not surprising that the chance you might feel a bit better is a very good motivator and I'm not finding it that hard really.  The exception to this is when i eat out with friends and I am allowing a few indiscretions then.
My trampolining is now up to two minutes a day (when weather allows) and my feet are now leaving the trampoline : ) 

Ivabradine for POTs

Today I had an appointment with my Cardio consultant at the local hospital.  At my previous three appointments he has asked me to try the drug Ivabradine to see if it would help my Postural Orthostatic tachycardia Syndrome (POTs).  I've been holding off, hoping that my heart rate would sort itself out as my other symptoms improve, but it hasn't really happened.  Anyway, yesterday morning, knowing I had the appointment today I took my first dose of Ivabradine.  I took it at about 6.30am and felt pretty rotten with a feeling of malaise and heaviness most of the morning.  Stairs were the worse with a horrible feeling of gravity pushing down on me as I climbed and very heavy legs.  In the afternoon I felt better and my heart did feel calm.  I put my heart rate monitor on for a couple of hours and my impression by the end of the afternoon was that there didn't seem to be much effect on my resting heart rate which was around 86 bpm whilst seated, but that it might be having some effect on my change to standing.  When I stood my heart rate was staying in the low 100's (up to 105), whereas some days standing can take it to 115 to low 120's.
I took a second dose at 7pm and felt horrible again but not for so long this time and when I took the third dose this morning again I felt horrid and heavy, but not for very long.
So I went along to todays appointment able to say that at last I had tried it.  My ECG heart rate on getting there was 105 bpm and my Doc didn't think the Ivabradine was really having any significant effect.  He suggested that I try it for a month - it is only day 2 after all - and when I'm a bit further in to the month he will do a 24 hour trace so we can get a picture of what's going on and whether it's helping.
Ivabradine is an angina drug and is not licensed for POTs, but some doctors have trialed it and had success with it for treating POTs - Article

Quick update

It's been just over three weeks since my last post, so I just wanted to do a quick update on what's happening.  It's been a busy three weeks with both Ant and two of the children having birthdays in the space of two weeks.  All that excitement and activity not long after Christmas does take it's toll somewhat.  I felt I had underplayed the Birthdays a little this year, normally I like to make such a fuss, this years celebrations were a little understated in comparison.  I was however,well organised and had all presents bought and wrapped well in advance so there was no last minute rushing around.
 In addition a close relative has just been diagnosed with a serious medical condition and we are waiting for test results and treatment information.  I'm supporting as best I can, but know at some point the emotional side of this will have an impact on my fatigue (it may already be happening).
So, I'm not feeling brilliant but there are lots of things going on that might have contributed to that.  It's not a major relapse or anything, just a general feeling of "under the weatherness", fatigue, heavy legs and the vagaries of a sore throat coming and going.  There is no excess energy once the necessary has been done.

On a more positive note, something exciting happened today.  I have been reading alot of research extracts recently and had decided that I was going to start my own podcast looking at some of the research taking place around the world and interviewing some ME experts.  Today I have had some correspondence from an American Doctor that I had approached to see if he would be interviewed and he has agreed!  I'm not going to say who it is at this point, but I am very excited to get this new project rolling.

Trampolining progress has been slow due to the foul rainy weather.  I'm only up to 1 minute 45 seconds due to the fact that I'm only increasing by 15 seconds every 4th session and I'm not getting out there on days when the trampoline is too wet.  Still, slowly but surely is a good way to go.  My bouncing is becoming a little more vigorous and I'm feeling much better when I bounce.  At first I used to get a horrible sludgy feeling in my head whilst I was bouncing and the gravity felt like such a heavy weight pushing down on my head.  It doesn't feel like that any more.  It does make me feel a little nauseous though.  Ant thinks my sore throats started when I started bouncing, he relates the two, I'm not so sure.

I've had my mitochondrial results back from Dr Myhill, I will do a separate blog post about them soon.

Mixed feelings

A quick update.  I've started on the tampoline.  Every 3 days I am increasing the bouncing time by 15 seconds, so, being super cautious to try and eradicate any adverse reaction.  I'm up to 1 minute 15.  As yet my feet aren't leaving the trampoline mat, but that is not important as bouncing on the mat still has the desired effect.  My aim is to get up to 10 or 15 minutes and then increase the force of the bounce.  So far so good.
My blood samples are currently at the lab.  I am having the mitochondrial testing re-done as it has been two and a half years since this was last done.  I'm hoping to see some improvement but also hope it will be useful to re-evaluate my supplement regime.  I'm very nervous about this as I know how I'm going to feel if they don't show some sort of improvement.  To be honest, they couldn't get much worse than last time, but even if they are static I would be disappointed after all the things I have tried and protocols I have put in place.  Last night I was reading about research into low level persistent viruses and ME.  I'm not sure whether it's a good thing to read these articles or not, on the one hand it's always great to read about research taking place and all the bio-chemical markers they are looking at, but the article also went on to talk about the fact that it can take 20 years from this point to treatment.
I have a referral to see Dr Annice Mukherjee at the Salford Royal Hospital and am just waiting for an appointment to come through.
This week I had a Perrin treatment and was feeling good going in, I was feeling on the up again and my body dealt with the treatment well, but since then I again feel like I'm fighting off another sort of bug or infection and have taken another step backwards.  It doesn't help that this has been the first week back into our usual routine and already I am feeling the effects, it had been wonderful having Ant at home over Christmas, besides anything else, another pair of hands makes a big difference.  This week however it was right back into it and I don't feel like I coped very well.