This Week -Five on a Friday

Hello......... It's been a busy old week here at the summerhouse, it always seems to get this way on the approach to Christmas.

I had a wonderful time in Brighton last weekend, seeing friends who played there first big theatre gig.  The music was amazing and a night out in Brighton with the wheelchair went much more smoothly than anticipated, the staff at the theatre were wonderful. It completely wiped me out but it was fun, so strange to see how much energy healthy people my age have.

The band play a mix of British folk and Americana and are called Hatful of Rain I've added a clip of there latest single if you fancy a listen

All the itunes download profits for this one are going to RISE a local domestic abuse charity.

This recent relapse has really hit hard and although I'm slowly starting to feel back to my normal baseline level again, it seems to have left me physically much weaker, this week alone I've had about four stumbles, which is not great, so I'm trying to get back to the yoga, but it a battle at the moment with no energy and joint and muscle pain.  Just need to try and improve my balance and stamina again, somehow.......

For the last few months I've been working on a Christmas project for the blog and as its only a few days until December eek, I thought I share it with you.  The plan, if I get all the posts finished in time is to do a yarny advent calender.  I've been trawling youtube for tutorials, of quick fun, festive makes, which I'm going to share each day on the blog.  I'd just love it if you'd all join in too, I know it's a busy time of year, but I think it so important to have some quiet time with yarn and hook each day and most of the makes I've chosen hook up in flash. 

The light on Thursday was just perfect so I couldn't resist taking some pics, I do love living by the seas although, I don't often get down there, it was the perfect pick me up after a trying physio appointment.  Yes the ankle is still not right, after not really getting any phsyio from the local nhs hospital, as I was not well enough to attend the group sessions they run.

The private physio, (nhs is funding) which has been good so far, proved stressful this week, when the physio asked me ' why can't you walk? I don't understand why you would need to use a wheelchair if you have ME !!! arggh my heckles were up. I hate the ignorant attitude patients with ME seems to face wherever they go.

Really not helpful, I tried to explain, but I don't think it got me far. I explained about  ME and having POTS and how overdoing things (even just walking can put me into relapse for weeks) and that a specialist ME physio has set my exercise limit at no more than 20 seconds a day, and that my current pacing set by the hospital is only 1hour 20 for all my activity for the day, and lately even that has not been happening.  In order to go to the physio appointment I'd been in bed all day, to which the response was 'I hope someone monitoring this.'

I just wonder would the same question have been asked of a MS, Lupus, Heart failure or Cancer patient, anyway rant over, so coming out to this view  was just amazing, it just so exhausting facing the ignorance, I just don't need it.

Onto so something more fun yesterday I went to the cinema with my nephew to keep him company and see the final part of the Hunger games, while my Sister and Mum did some Christmas shopping. So all in all it's been a busy old week, for me as I tend to only leave the house maybe once a week if I'm well enough, so a few days in bed for me now, which will hopefully give me some time to finish off some more advent posts.

Joining in with Amy's five on a Friday

Clare xx