Tuesday, 12 January 2016

Parasympathetic Nervous system and ME CFS and CFIDS

This morning I've been reading an interesting article about Vagus nerve Stimulation courtesy of Cort Johnsons excellent blog/website article here
There has been some success in Fibromyalga pain reduction using Vagus Nerve Stimulation (VNS).  The article goes on to talk about how VNS can help stimulate the parasympathetic nervous system which helps the "rest and digest" processes in our body.  Electronic stimulators are very expensive, but there are several things that you can do to help the process manually which many of us are probably already trying as part of our recovery/treatment, these include yoga and meditation/deep breathing.  One of the things mentioned in an article Cort links to is Om chanting and how it can help:

‘OM’ Chanting An interesting study was performed by the International Journal of Yoga in 2011, where ‘OM’ chanting was compared with pronunciation of ‘SSS’ as well as a rest state to determine if chanting is more stimulatory to the vagus nerve. The study found that the chanting actually was more effective than either the ‘sss’ pronunciation or the rest state. Effective ‘OM’ chanting is associated with the experience of a vibration sensation around the ears and throughout the body. It is expected that such a sensation is also transmitted through the auricular branch of the vagus nerve and will produce limbic (HPA axis) deactivation.[iii] How to chant? Hold the vowel (o) part of the ‘OM’ for 5 seconds then continue into the consonant (m) part for the next 10 seconds. Continue chanting for 10 minutes. Conclude with some deep breathing and end with gratitude.

I'm going to give it a go.

Sunday, 10 January 2016

ME CFIDS CFS sleep and recumbent cycling

On the second of January I tried to start the building up of my calf muscles as mentioned in my previous post.  The recumbent exercise bike that has been sat unused in the spare room for the past seven months was the method of choice for achieving this.  I did 5 minutes on the bike with no resistance set.  The first two minutes were really hard, but then it eased a little.  I watched my heart rate monitor and the highest it got was 109 bpm and only for a short time, but when I got off the bike my legs were trembling and my body felt delicate and shaky.  This meant of course that I was good for nothing for the rest of the day.  Infact it took me five days to recover from my five minutes on the bike.  Today I am going to do 15 seconds on the bike and build it up in 15 second blocks.  Let's see how that goes.
The other thing the incident on the bike did was upset my sleep pattern.  Normal for me is waking for two toilet trips at about 1.30am and 4.30 am, after the cycling I found myself lying awake in bed for a couple of hours between two and four am.  I am pleased to say that this seems to have corrected itself, and last night I slept for seven hours straight (9.30am to 4.30am) WooHoo!

Friday, 1 January 2016

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.

Saturday, 22 August 2015

ME CFS pacing

Yesterday I went to collect DD2 from a week long summer music school which always finishes with the most fantastic of concerts.  I guess I'd watched about 85% of it before I all of a sudden felt very warm and had to remove my cardigan, then I had a pain in my sola plexus and then horrible palpitations.  I looked at Ant and I think he knew what that look meant, I had to leave.  Luckily we were sat in the front row and when the piece they were playing finished I headed out to the corridor where I sat with water wondering where I could reasonably lie down or whether or not that would make me feel any better.  I went cold and had the shakes with tremors and then gradually it all subsided.  I could hear the finale of the concert, but it's not the same as being in the audience.

It reminded me very much of a similar incidence back in June at a speech day when I was just sat watching an event and enjoying myself and almost exactly the same thing happenned.  That day I put it down to the heat in the marquee that triggered the reactions.  Ant says it was hot yesterday in the music hall, but I didn't feel it.

Anyway, afterwards yesterday my head hurt and this morning I woke up weak and with a headache which hasn't moved all day.  I was supposed to be out with Ant and Ben today, but I couldn't make it and they went for a boys day out together.  I have spent the day in my pj's on the sofa.  Yet another planned day out missed.  Probably my own fault for over scheduling myself (again).  I had had a reasonably busy week this week, but I seemed to manage pretty well as it was happening, yesterday, whilst I was sat relaxing and listening to music my body objected retrospectively.

6 years down the line you think I would be better at knowing what I can and can't get away with, but I am still unrealistically optimistic about what is possible.

Saturday, 15 August 2015

6th anniversary

Today is the 6th anniversary of me falling ill with ME.  I'm feeling OK about it at the moment.  It hasn't been the best 6 years, there has been so much in that time, that I have wanted to do and not been able to.  Equally, just because of my nature I have probably done more in that 6 years than lots of healthy people would have done.
It seemed fitting that I travelled to see my cranial osteopath today, he has helped me so much over the past 6 years.  It only takes him 40 minutes to treat me now, it used to take an hour and a quarter.  I feel so weird afterwards, light headed and vacant, but nearly always sleep better following a treatment.  It has been a valuable part of my treatment.

Thursday, 13 August 2015

It's been a while...

It's been  two and a half months since I last posted.  I'm not sure what has kept me away, maybe I just don't like writing about negative things and have avoided updating for that reason.  Now I am annoyed with myself for not doing so, as it's so easy to forget how I've been and what has happened and I've lost the opportunity for "as it happens" recollections, now everything is retrospective.

So, what has been going on in the last eleven weeks?  Well, things have gradually been improving and I would say that my steps are now at a baseline of around 3000 - 3500 per day,  that has come by means of a steady increase.  I still cannot exert myself physically in any way and am finding even the therapy center yoga class hard going (although that too has improved slightly).  I am walking around a bit more and haven't needed the wheelchair.  Walking even very short distances was making it difficult for me to talk with effort, that has gone now which is comforting.  Whereas when I first came out of hospital I was scared that I wasn't going to be able to build myself up again at all, I now feel a little more hopeful that I will get back to my pre-hospital levels of activity.  I do now feel I've plateaued again though and am not sure whether there is any more I can do to assist other than rest.

Rest is a difficult one as I am already so de-conditioned that resting (pacing) makes me feel like it's not helping, but I know it's what my body needs right now.  I know that because, the minute i try and do "too much" I get palpitations and the fatigue just cuts in.  So, it's a VERY fine line between resting / pacing and keeping up current levels of activity - a constant balancing act.  It's always been that way (as it is for anyone with ME), but right now it just feels more delicate than ever.

I asked my GP if I could access some more CBT to help me deal with the frustration of not being able to do anything and as always he kindly obliged.  I've always thought that the usefulness of CBT is dependent on the therapist and your connection with them and sadly, unlike my previous experience, which I found very useful, this lady just didn't seem to get inside my head.  She didn't seem to understand my thinking or give me any ways of dealing with the frustration.  Of course I had to fill out the mandatory "are you depressed" questionnaire.  "Well, you're not depressed" she said, ...yes I know that!!!  I already knew that before I ticked all your boxes!!!  I've come to you for help with the frustration of not being able to do all the things i want to do, not because i am depressed.  So, her advice was that she thought I had not accepted my situation and that I would find things easier once i did.  I don't even know what to say about that.

Nine weeks ago we had a long weekend in Centre Parcs where I spent a lot of time sat at the side of the pool watching the others.  We used the wheelchair a lot which I didn't like.  It did at least mean I could do things I wouldn't have been able to without it and join in a bit more which made it more bearable.  It was a relaxing break.

I've also had a Perrin technique appointment and stepped up my massages to see if that will help, so now back to having the full massage every day lying down rather than just every other day standing up.

A few weeks ago I was diagnosed with skin cancer, Basal Skin Carcinoma  A GP treated it twice with cryotherapy but then sent me to a specialist who organised a biopsy.  He was hopeful it could be treated with photodynamic therapy, but after the biopsy they have decided that it would be best treated with surgery.

Recovery has been slow, I feel I have missed the summer really, but I am trying to make the most of the energy I have and be grateful for what I can do.  Still my mind buzzes with ideas and  more things it wants me to do. In my head acceptance means trying in some way to curtail those urges to act and as frustrating as not being able to do those things can be, I'm not sure I want to "accept" and curb the desire.

Tuesday, 26 May 2015

Not quite ready for rhubarb chopping yet

If only I took my own advice.  Yesterday having felt my system calmed by the Cranial osteopathy on Saturday, I spent the day downstairs in the garden, kitchen and lounge.  At about 4pm I was stood chopping some rhubarb in the kitchen and had horrible palpitations.  It left me shaky and internally agitated for the rest of the afternoon and evening which I spent on the sofa.
I interpreted this as my body saying you've tried to do too much and today I am back on my backside on the sofa trying to occupy myself in some kind of interesting / useful / therapeutic kind of way!
To put my activity into some sort of context, prior to my trip to the neurological hospital I was averaging between 5000 and 7000 steps a day (5000 was a good safe baseline for me).  This week, my weekly total was 7000 steps, so averaging 1000 steps a day.  This surprised me actually as I know some days I've only managed 4-500 steps and didn't think I'd done much over 1000 on any day.
The Fitbit is so useful for this kind of tracking.  I probably need to be limiting myself to 6-700 steps a day right now.