Friday, 26 July 2013

Another sunny Saturday bed!

Last weekend was not so good again.  I've lost count now of how many weekend afternoons I've spent in bed.  It's soooooo frustrating, especially when the weather is good.  On Saturday I had the horrible nauseous yuckiness that I used to get and just felt rotten in the morning.
I do have a theory about my little "dip" this time.  I think it could be down to the building and kitchen fitting work that has been going on in the house.  My translocator protein tests that I had done with Dr Myhill showed that my body was not dealing with chemicals very well, in particular Formaldehyde.  Well there's quite a lot of that kicking around in my kitchen at the moment and it just seems a bit coincidental that my wellness should take a dip at this time.  In addition I've had a constant supply of Perrin spots.  By that I mean spots appearing along the lines of my Perrin massage, so on my head, forehead, neck and chest.  This teamed up with the nausea makes me think that my body is trying to deal with these toxins.  I've had the vague rises of a sore throat and tender glands too.
On Thursday I went to see my heart doctor at the hospital.  We talked over the last 6 months and I asked him lots of questions about increasing blood volume to try and improve the POTs syndrome.  When I finished he said "will you just do me one favour?"  "Will you just take one of the tablets just for one day and see how you feel". He asked so nicely, I think I might!  He has given me the same prescription for Ivabradine twice before and I've never used it.  This time I took it to the pharmacy and actually collected it which is further than I've gone before.  It would be funny if I start taking them and it cured all my ills, I know he would say to me "you see, I told you to take those 6 months ago". I'm nervous about it, I really don't want to start taking heart medication again, but I have given it a year without the beta blockers to see if my heart rate would come down on its own and it has a bit, but not enough.
Anyway, I'm going to forget about all that for now.  We are on the first day of our holiday and I intend to spend two weeks doing not very much, that has got to be a good thing.

Wednesday, 17 July 2013

An afternoon outing

Well, my knees and thighs finally feel like they might be back to some kind of normality - thank goodness.  It's taken a week and a half for them to recover.  As i was getting stronger i took it easy andI laid off all my usual weekend activity such as the hydrotherapy pool and yoga and just kept myself busy around the house instead.
In lots of ways this beautifully hot weather has encouraged me to relax more, I've spent some time in the hammock or the garden chairs outside and just sitting in the cool inside.  My body seems to be coping with the heat pretty well at the moment.
I  Overcame a demon today by taking the children on a trip to a local beauty spot where they could swim in the river and cool off.  It's about a half an hour drive from our house and the last time I'd been there was almost 4 years ago just after I had fallen ill.  I remember it fairly well, it was the day I had been to the doctors for the first time, not knowing what was wrong with me but just feeling awful.  My pulse was racing, the doctor had said he thought it might be a urine infection and sent me away with some antibiotics, if only it had been.
We met friends at this beauty spot that evening for a barbecue.  I just sat on the rug feeling rotten and telling everyone i probably had a urine infection.  I remember when we went to leave having to walk across the field to get back to the car park and it was such a struggle.  I'm glad to have been back there with the children today and had a nice time with them, hopefully I won't just remember that place for how I felt at the barbecue that day now.
Tonight I am in bed exhausted, it was quite a lot of driving for me today and also I seemed to knock up 1000 steps just around the house this evening bathing and putting Ben to bed this took me to 7600, just too many.

Thursday, 11 July 2013

A Weak Week

It's almost a week further along now and my legs still don't seem to have recovered properly.  I was supposed to take the DD's holiday shopping today, but have had to cancel and have been on the sofa most of the morning.  I'm going to try and keep my steps really low today in the hope I may be able to take the girls out tomorrow instead.
I have had a Perrin appointment this week, my physio gave my thighs a lovely massage which hurt at the time, but definitely made them feel better for a short while.  I was pretty good post appointment it had a really bad headache and felt bad by 7pm when I went to bed.
Yesterday I went to my yoga class at the therapy centre which was all either sitting or lying down it normally makes me feel better, but yesterday even that felt Like such hard work.
I guess I've just got to rest up until this passes, but it so hard when there's so much to do.  I've got an interesting book that has been taking me ages to read, so I'm going to force myself to stay sat down and try and finish it.  There's always Candy Crush of course...

Sunday, 7 July 2013

ME CFS and weak legs

I woke up on Friday with really weak legs, but it was different this time.  Normally my thigh muscles just go very weak, but this time it was my thighs and my knees.  My knees were aching so much, my body was shouting at me to SIT / LIE DOWN.
Thank goodness for the weekend as Ant was around and he made me rest, the weather's been beautiful so I spent lots of time in the hammock in the garden and watching the tennis.  I've managed two days of under 4000 steps which has really helped.
It's really weird that I don't feel poorly as such and I'm sure it's the Perrin Technique that's made that difference, but the achey ness in my knees is a new symptom and that worries me.  My general pattern is that my symptoms are decreasing, I don't like the sound of something new.  I have felt slight achy ness in my knees before when I've been fatigued, but not like this, it's constant and my legs just don't want to be stood on - which makes things a little tricky.
This evening they felt a little better, but as I lie typing this my knees are uncomfortable and my thighs aching and weak.
The last few months have finally caught up with me.  I had to go to bed for An hour this afternoon during the Murray Wimbledon final!  Saw the first set then Feel asleep as soon as I lay down, fortunately woke in time to watch the third set, what a game!
Really got to try Hard to carry on doing not very much this week

Thursday, 4 July 2013

Too much today

Crashed today, it was too big a day, a trip to London and 10000+ steps.  Too much on top of everything else that's going on at the moment.  At the same time my sleep hasn't been as good as it has been.  I need to sleep now and tomorrow all those things that I told my husband I would do on Friday?  Well, they're just going to have to wait.  Thank goodness there's a small tennis match going on - that will give me a good reason to sit down, though with Andy Murray playing, it might not be too relaxing!