Saturday, 24 March 2012

It took a week for me to get back to "normal" and then we were off to Centre Parcs for the weekend, I tried to join in with the activities as much as I could, managing a few goes down the rapids with the children each day.
On Wednesday after my usual daytime activities I was completely washed out by tea time showing me that I obviously hadn't recovered fully from the latest little relapse.  Ant came home after a hard day at the office, prepared dinner put the littley to bed and drove the biggest to her orchestra practise  I was good for nothing.  On Thursday I took myself to the cranial osteopath.  I would like to have gone at some time the previous week, but I just can't drive there when I have no energy.  He said he thought that what had happened the previous week was a warning that I had been doing too much and needed to ease off.  It's just so difficult when you start to feel a bit stronger not to do more.  That night I did manage to make dinner before heading off to bed just before 7pm.
Over the last two days I've been getting gradually stronger again.  Yesterday I managed to raise my voice to call the kids for dinner, something I wasn't able to do on Wednesday and Thursday.  Today I walked down to the village and back again which I haven't done for a while and I was pleased with how I felt when I got back home.
I have decided to put my Mickel Therapy on hold.  I'm finding it's just conflicting too much with the advice I'm receiving from everyone else.  I'm going to send an e-mail explaining to the therapist and suggesting we restart in late August or early September time, by this time I will have been on my supplements for a year and Dr Myhills advice is that if at this point I am symptom free at baseline activity levels I can then start to increase my activity.  This will then  make the Mickel Therapy easier.

Wednesday, 14 March 2012


So, I spent the day in bed and didn't make it out to the celebration dinner on Saturday.  We re-booked the table for Sunday which I was able to do and enjoy.  I was thinking that I had recovered well, but then dipped again on Monday and had tears of fustration in the afternoon at how rubbish this all is.  I didn't have the energy to drive my little lad to football practice Monday teatime, but can't cope with the idea that he has to miss out because his mum is not feeling well so, I got in the car and took him anyway.
Tuesday I felt vaguely better and today I am floored again and couldn't take the girls out to one of their social gatherings.  Fortunately a  kind friend took them for me or I would have felt bad about them missing out again.
I'm going away for the weekend so have to do absolutely nothing tomorrow if I stand any chance of having any energy whilst we are away.  It's been a while since I've had a week like this and it brings The Spoons Theory to mind.  The lady who wrote this passage suffers with Lupus, but it is sometimes refferred to by people with ME/CFS as it communicates some of the issues well. Click for Spoon theory
Had a copy of a letter from my heart consultant to my GP today suggesting a change to my medicine.  He finished his letter by saying "In the meantime hopefully Mrs B can have a look on the internet to get her own thoughts about this move."  I feel he is getting to know me : )

Saturday, 10 March 2012


It's been a good run I guess, but last night I had one of my funny turns in the night. Sort of out of the blue really. Haven't had one of these episodes since the summer. I really believed I was over these, that I had recovered significantly enough that I wouldn't experience these funny night time episodes again.
I had been out for dinner with friends and was having a good time but at about 10pmish I noticed my pulse was racing. It does tend to do this when I get tired. I didn't feel tired. I felt unwell for about 5 minutes, but that passed and I stayed at the restaurant until 11ish. My Heart rate was still up when I went to bed, so high i didn't dare take my pulse because I knew that knowing how high it was would make me feel worse. I was thirsty and didn't get to sleep too well. Then I woke about 3am with all the old symptoms. I woke Ant who was fab and tried to calm me as we knew what was coming. It was a slow process, took a while before my body started shaking. It was less forceful than it has been before which was a relief. Then I didn't sleep well which of course just compounds things. This morning my heart was still racing I had a headache and feel weak especially in my legs.
As for the cause, who knows, but there are two possible things that spring to mind. On Tuesday afternoon I kicked a football around the garden with the kids and although it wasn't anything too crazy, there was some physical exertion there. Felt good at the time. Secondly, on Thursday the girls received the results of their first ever GCSE results and this was very emotional.  You often wonder if you are doing the right thing when choosing to home educate your children and as their results were good I felt a huge sense of relief and emotion.  I know from past experience that high emotions like this can take their toll on my well being.
Who knows, but this is a huge dissappointment and I suspect that the psychological effects of last night's episode will be harder to get over than the physical ones.
This afternoon we are supposed to be going out to dinner to celebrate. I am spending the day in bed in the hope I feel strong enough to go with them. My beta blockers have already worked on my heart rate and slowed it down which feels better.

Saturday, 3 March 2012


Yesterday I had a copy of the letter that has been sent to the heart consultant and my GP about the Tilt Table test.  This confirmed Dr Greys diagnosis of postural orthostatic tachycardia syndrome.
When I phoned Dr Greys office to find out what the situation was now she has retired I was informed that there is now a GP with a special interest in ME/CFS attatched to the CFS service in my own town, so although I am disappointed that Dr Grey isn't there to ask advice any more I am pleased that we now have someone locally and next time I am feeling in need I will ask if I can see them - lets hope I don't feel I need it for a while.
Not been feeling brilliant this week, but I think that is just tied into my monthly cycle which I'm noticing more and more effecting my CFS symptoms.  I think I am noticing this more because for the rest of the month I feel so much better, providing I don't stress myself emotionally or physically.