Tuesday 26 June 2012

Yay spots!

Feels like a while since I've blogged.  Brain fog is still with me and that is probably why I haven't managed to update.  Problem is I forget so quickly if i don't write down how I'm feeling.
Felt very nauseous when i went to my last Perrin appointment on Friday.  Fatigue is just under control at present.  The minute I do anything slightly exerting I feel the fatigue in my muscles straight away.  Yesterday for the first time I attended a school sports day and didn't take part in the parents race.  Normally my competitive being would be out there, not just to take part, but aiming to win.  Yesterday I did seem to have some kind of comfortable acceptance that it wasn't going to happen.  Just a fleeting thought of I wonder if my son is questioning why I'm not getting up to take part.  He knows I can't run, but he doesn't really understand why.  Maybe it's time to have that conversation with him in a bit more detail.  Anywhoose, he never mentioned the parents race so he obviously wasn't bothered and neither was I.  This is a bit of a step forward for me mentally I feel.  I have been reading about acceptance a little lately, the fact that we can either try and plough on and pretend that nothing is wrong or we can embrace a new way of relating to ourselves and the world.  Acceptance is not about giving in or giving up, but about facing that thing which we fear, turning towards it and taking hold of it.  This gives a better understanding and then hopefully it is possible to see things with a clearer mind and respond in a better way.  Acceptance can be linked to positive change.
That said, I still have work to do in this area as my brain still thinks a lot of the time that my body can cope with more than it can.  This weekend I had the idea that I wanted to do a car boot sale in the village and get rid of some old toys and games that were hanging around.  I was sensible to the point of saying that I wouldn't make a decision about this until the morning of the sale and see how I was feeling then.  When Sunday morning came the weather was coldish and blustery, threatening showers.  I was still up for doing the car boot, but fortunately Ant was there on hand pointing out the reality.  Why would I put my body through three hours of standing out in the cold?  He is only too familiar with the effect this has on me  - hot or cold, these things just zap me and he is the one who has to deal with the consequences.  He very sensibly talked me out of it, me walking away mumbling something about how I thought it might be okay and knowing of course that he was right.  It's  a bit of a running battle between brain and body about what can be done.
  I'm going to take DD2 to my Perrin appointment this week so she can observe how to position the thoracic wedge.
Then once my therapist thinks my body can tolerate it I will take a wedge home and use it every day to help mobilise to top of my spine. I have never been so pleased about discovering a spot on my body as I was yesterday.  Every week when I go to my Perrin treatment my therapist asks if I have any new spots and I normally say no.  Yesterday I woke to three spots around the area where I do the lymphatic massage.  I think this is a good thing, a sign of toxins trying to leave the body.  I shall take great pleasure in telling her I have spots this week.

Monday 18 June 2012

D-Ribose and ME / CFS / CFIDS

This is the third time I have sat to try and write this blog entry.  Concentration is not good at the moment, although I have been able to read some non-fiction books in short bursts.  I have offered to write a piece on meditation for a local magazine and I really want to do it, but I just don't seem able to set myself down to the task.  The very idea just seems overwhelming.  Thinking about it now as I write, I probably need to break the whole thing down into smaller chunks that seem more manageable such as just sitting down to do some planning one day, maybe prepare an introduction the next and so on. 
This week had been much easier than last.  My fatigue had been back under control again.  My latest Perrin appointment was 7 days ago and I've had been feeling pretty good, some stiffness between my shoulder blades, but most of the symptoms I had last week had subsided.  Unfortunately a late night on Friday and a busy day on Saturday took their toll and by Saturday teatime I was good for nothing.  Sunday continued in the same way, went off to bed in the afternoon, which I don't have to do very often these days.  Felt head achy, hayfevery and my sore throat returned.
Had a bad night's sleep last night, but this morning I do feel a bit revived.  I need to do something to help my brain fog though, I think I need to go back to list writing - I need an action list that I can prioritise as my brain is all over the place and I am jumping from one thing to the next in no particular order and probably achieving very little.  I shall set to work on this today.
On Saturday I had my first cup of caffeinated drink for nearly 3 years.  I have had another today.  One of my supplements D-Ribose is best absorbed when taken with caffeine, but because of my high heart rate I have been avoiding caffeine.  Now my heart rate seems to be more manageable I thought I would try it.  I take D-ribose 5 times a day but at the moment I am just having one cup of green tea in the morning with d-ribose and the other doses I just take with herbal or fruit drinks.  Here is some information about why d-ribose supplementation might help - article

Sunday 10 June 2012

Perrin Technique - Bring it on

I don't really want to blog today as I fear it will read as a whingey list of irritating annoyances.  I know however that I will forget how I'm feeling if I don't document it.  It hasn't been a brilliant week energy wise, but it has been an enjoyable week in other ways.  Two days this week it has been really hard to get out of bed in the morning.  My body has just felt devoid of energy.  I did have a lie- in on those days, but mentally I don't want to be lying in bed, I want to be up, even if I'm doing very little.  When I'm feeling this sort of fatigue, it is my legs and my thighs in particular where I feel the weakness most.  If I'm lying in bed, then lifting my knees so the soles of my feet are flat on the bed is such an effort and the thought of getting up makes you not want to try.  The hardest bit is getting out of bed.  Once I'm up I know I can get mobile, but there is a balance to be had here, Dr Myhill says that the problem of pushing through this sort of fatigue is that it creates cell damage by free radicals, this is a bad thing, particularly if you have a low antioxidant status.
In the past months I have been feeling relatively well at base line activity levels, so as long as I haven't pushed myself physically, emotionally or mentally I have felt fine.  This week however I have been at base line activity levels and still had fatigue and not felt well.  This is the first time I've felt like this for any length of time for quite a while.  In addition to the fatigue, I have had an ulcerated tongue for 6 days now and the vagaries of a sore throat hanging around but not actually developing into anything.  Generally feeling run down.
Due to a fault of my own I have been without one of my supplements for a week now - VEGEPA.  I  normally take 4 of these a day.  Because it coincides with a drop in my energy levels I can't help but wonder if it is connected.  This thought makes me a bit sad as it makes me think that my body is just being artificially pumped up by all the supplements and if I stop taking them I'll be back where I started.  My current mindfulness reading tells me that this is just my mischievous monkey brain chattering negative thoughts at me.  The more positive view is that the way I've been feeling this week is just down to the Perrin Technique treatment and all the toxins that my body is now having to deal with being released into my system.  This is a good thing to that I say, "bring it on".  Really looking forward to Tuesdays appointment to see what my practitioner makes of it all.

Friday 1 June 2012

Perrin technique and what a difference

What a difference a day makes.  A quick entry as it is late and I need to go to bed, but I want to jot down how I've been feeling before I forget.  Yesterday I was so high and so I was when I got up this morning.  I felt good and decided to have a sauna.  It was weird, normally I lie in my sauna bag for a good 25 minutes and during the last 5 minutes have a horrible feeling of clamminess and desperate need to sweat before it actually happens.  Today was a little different.  I got hot, but then I had a strange feeling of coolness again and then I got hot and then coolness again.  At first I began to wonder if the sauna was working properly, but then the thought occurred to me that my body might be trying (and succeeding to some extent) to cool itself.  Was my body trying to regulate itself perhaps?  I don't know if that was what was happening, it's what it felt like and that would indeed be a good thing.  Retrospectively though, it probably wasn't a good idea to sauna on a day I'm going for a Perrin treatment, I don't think I'll do that again.
Ant dropped me in the car to my appointment.  I was still feeling great and my physio could tell I was feeling good.  Each time I've gone (this was my fourth visit - third proper treatment) it has got a little more intensive and today she did an awful lot and worked for quite some time on the thoracic area of my spine, trying to mobilise it.  It all felt like one of those likable discomforts, it didn't feel very comfortable, but I wanted her to do it.  Anyway, I think my body went through it a bit on her table today.   I felt a little light headed walking home.  I iced the top of my spine when I got back and after about half an hour of being home fatigue set in, I felt sick and had a headache.  I sat and watched a Star Wars film with DS, forced down some lunch and by 2pm I had to go to bed.  What a drastic change from how I had left the house earlier in the morning.  I slept for an hour and a half and then meditated and just led there for another hour and a half.  I got up at 5pm feeling somewhat better.  It made me think that maybe morning appointments  aren't a good idea as they might wipe out the rest of the day.  So, at least today I do feel that the treatment has had some effect on my body.  Think I might be a bit achy tomorrow.