Sunday, 29 November 2015

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


  1. I listened to the clip of your friends singing and it's just beautiful. The subject matter is not as beautiful, but what a good thing they're doing in donating the proceeds to a domestic abuse place. I'm sorry to read you're still not doing very well and of the ignorant attitude at the physio appointment. I hope you're feeling better again soon. I do really like the crocheted heart you made. It's beautiful is the pattern available somewhere?
    Blessings, Betsy

  2. your idea for an Advent CAL is great.I am still crocheting snowflakes not for Homestart but for my house as a Xmas decoration.Thanks for the idea.Hope you recharge ,your very low,batteries soon.Life must be such a struggle and yet you battle on and stay positive.Well done you.Give yourself 5gold stars!!

  3. Love the idea of an advent calendar. Ignorance is no excuse for someone working in a hospital environment. Hope a good rest will recharge your batteries in the short term. Take care.

  4. Therapists are the pits and I am one of them! Although I feel this one was particularly ignorant. Why would the private funding fund a therapist who does not know what they are doing? So sorry for him/her on behalf of all of us! I can't wait to see that movie, I have heard wonderful things about it.

  5. It sounds as though you've been having a really tough time of it, and I can imagine how very frustrating it must be when the people who are supposed to be helping you and in the know are so ignorant of your needs and abilities. I hope things improve for you with a few days in bed although I know it is an ongoing battle. CJ xx

  6. Oh dear, I am so sorry that the therapist is clueless about your struggles. It is very frustrating to have to explain medical facts to medical staff! I hope you are able to get in a few days of rest so you can get back on track.
    My niece who has POTS was here for T-giving, and she did a great job of keeping to her schedule. Such a difficult and mysterious disorder!

  7. Hello Clare, I've just hopped over here from CJ's Above the River. I think we live quite close to each other (is that Deal Pier?). I'm sorry you are having a tough time of it lately and I hope things improve soon. It's a busy old time of year and the temptation is always to do too much, but I'm sure you've learnt to pace yourself. Take care and best wishes. Sam x

  8. Hi Clare just popping in to see you. I have been going to pilates for the last month and it has done me the world of good - my back pain has nearly gone! Jo x

  9. I look forward to seeing your yarny advent calendar. Keep taking care of yourself. xx