Thursday, 27 August 2020

DOING A SIX MINUTE WALK TEST AWAY FROM THE HOSPITAL

As more and more things are being done away from the PH ward in order to keep us all safe I was asked to do a six minute walk test from home.  We were sent the app and decided to walk up and down the length of our Mount at home.  Everything ready, my machine that registers my pressures in my lungs turned on, blood pressure monitor and oximeter all prepared.  My Fitbit watch raring to go away we went.  As there is a slight slope outside our house we decided to use my scooter to get to the flat, as they do in the hospital.  This was not one of the walks where you need to keep stopping and going on the beeps, this one one that when you begin you walk for full six minutes.  All went well until we finished the walk and then Colin realised I should have been carrying his  phone that had the app on!  I decided to rest up for a while, have a game of Ludo and away we went again.  My pressure levels read, blood pressure, heart rate and oxygen and off I went.  I walked 556.86 metres which was around 30 metres less than my trial run but there it was.  I was still happy.  All pressures retaken etc and the results sent off to my specialists.  ( Izzy came in handy here as she jumped on my scooter when I got to the flat of the Mount and drove it so that once the 6 minutes was up I could jump quickly back on it and whizz back to my machines to take the readings) 


Now had I tried to do this test the day before the most I would have done would have been measured in steps and likely I would have managed around 800 steps only as the day was not good re my ph.  My heart rate has risen again which I hate and I do not know the reason why but am assured by my A Team that all is being monitored,  I just need to wait now and see what they think about this test and all results from it.  My team say that whilst not quite right with meds they will see if there can be more adjustment.  My head tells me it is just the progression of the disease  but we shall see.


My water retention remains good with just some swelling in the evening but that is fine.  I can’t lose any more weight though now being between 8. 7 and 8.8 - or  54. kilos depending which way your brain works.  Mine is still the old fashioned stones and pounds. Whilst it sounds a decent weight my doctors and Colin too knows well how quickly I lose weight when poorly and just how much I lose which would not be good so I must try not to let my weight get any lower.   My sister told me to eat chocolate but I have never been a chocolate fan, preferring instead fruit gums etc but since being so poorly in November my sweet tooth fled never to return.  My preference would always be for a crunchy salad with a dressing of just fresh lemon squeezed generously over it.  I must confess here to having cheated on what one can and can’t have with my meds.  Grapefruit is off the list but I love sour things and eat many lemons.  However on a trip to my supermarket this week I saw the most tempting looking red grapefruits.  One just happened to find its way into my bag and oh my how I enjoyed it later that day.  I peeled it as one would an orange and it was so delicious.  I reckon an odd treat should be in everyone’s remit.  I also have my own jar of olives sitting in the fridge, not to be confused with the other jars we have for everyone.  This is specifically my jar and I often eat quite a lot in the afternoon when it is my lazy time along with gherkins.  Colin thinks I have odd eating habits but I prefer these to his chocolate treats any day.  In fairness though he has cut down so much on treats over lockdown.   We must be getting healthy!!!!  


I can’t believe we have been in lockdown for as long as we all have.  The daft thing where we live is that we can’t see our family in gardens but we can go to the pub!  I despair but I am not picking at the government, it must be such a hard call with differing opinions coming at them from all angles.  I just want them to find a vaccine and for life to return to normality again for us all. We are blessed with a wonderful view here though at our home so as I sit here on our terrace listening to the lowing of the cattle on the hills and the sheep I am just thankful that so far none of my family and friends have contacted this disease. I pray this continues.  


Colin has begun decorating the house,  Though less than two years old new house wood shrinks a little and this upsets perfectionist Colin who has set himself the task of sorting it all out.  I have the good excuse of not helping as clearly the sanding down and the paint fumes are not good for my lungs.  Any tiny little shrinkage of wood has no chance against Colin. Armed with his sandpaper, sealant and calk away he goes.  This will be a steady away job though as we see no reason to go mad with any task, we have all the time in the world, well as long as our bodies keep on going of course.  


We are still undecided about going away in the motor home for a few days.  No it’s not COVID stopping us but the weather,  Though we both have all wet weather gear and can be ready for all weathers I think it’s one thing going away expecting reasonable weather and then coping with the bad than going away expecting bad weather and getting it thrown at us from all angles.  So the jury is out on this one.  There is no rush, we can make a decision any time and go for it.  


I will be honest and say I would love to go away in a super hotel and be well catered for but right now as things stand I know we will feel safer in our own home on wheels,  The cleaning and disinfecting is down to us, we are masters of our own destiny and Colin cooks delicious food in the kitchen of the motorhome when we are away so we need see nobody and no-one gets bothered by us. Neither of us are pub people, we would just take gentle walks and if it is a bad day for me ( which happens more and more frequently alas ) Colin feels safe leaving me in our home on wheels whilst he sets off on a bike ride, riding for miles around beautiful countryside.  Clearly if I was seriously poorly then we would return home or to the nearest hospital depending on the issue.  I am still troubled a great deal by my back - this started whilst in the motor home last November.  Whilst much improved I do get nervous about it going again.  The meds and the stress caused damage to my already poorly heart and I do not wish to go down that avenue again.


Just had a call from the company dealing with all the new remote monitoring equipment for ph I  am to have delivered.  It will turn up on Saturday and he will ring us on Monday for around an hour of  tuition on how to use it all.  Human robot now for sure but so very pleased to have the opportunity to trial yet again for ph.  We won’t be beaten COVID or no COVID.  I will go into more details of it all in my next blog when I understand it better.  


I must confess to enjoying shopping again, I grew tired of online shops.   Some I still do online but I do like to go around the supermarket and see the produce.  We keep well clear of everyone and sterilise ourselves and produce alike.  When we enter the store which is quite a large one we are checked in, still only so many allowed.  I use the self check thingy where you read the bar code and just pay at the end without the need for human contact.  I do take a few sheets of the sterile papers from the huge tubs at the supermarket  door and wipe my trolley down and then with clean ones wipe down the machine that reads the bar codes and wipe all my shopping as I pick it up and place items immediately into our bags.  This means once I return  home we do not have the tedious task of sterilising everything again,  Fruit and veg I do wash at home before putting them away.






We have been blessed with our garden. We have had so many sweet peas we give them away to my daughter and Izzy and I also wrap the stems in wet paper and deposit them on my neighbours doorstep. We still havea ton of Romanesco in the freezer.  Strawberries are now giving us fruit daily and our beans are producing the most wonderful tasty veg for us.  The apple tree has apples in abundance.  I think I will pick them and prepare for the freezer as way too many to eat.  This year we planted another apple tree and a conference pear tree too,  My toms are doing well now after a slow start and the squash is beginning to develop its fruits at last. Never having grown squash I assumed one plant meant one squash.  How wrong was I and there are many fruits at different growths on ours,  I reckon my recipe for spiced Thai squash soup will be used often later. Not seen the plum tree for a while as felt a bit ropey and it is on the bottom garden but maycheck tomorrow.  We are eating our own potatoes too so all in all we have had much enjoyment out of watching them grow, watching the cheeky squirrels eating our apples and our strawberries ( still don’t likesquirrels) and knowing how good and fresh it is and not touched by COVID. Squirrels appear not to like parsley and spring onions so they have been totally ignored by them. I have noticed them digging up our bluebell bulbs which had been given to us by a friend and dug into the ground by Colin.  Michael was very generous and gave us lots of multiple colour ones. I was so looking forward to seeing them grow but doubt there will be many left.  Colin still continues to bake the most delicious sour dough, it’s really good, he has perfected  the crust to how we like it.  Always a treat when bread making day. 


Our family next door have now finished their isolation after their holiday and returned to work.  Izzy had two choices, stay home with Uncle Haydn or stay with us again.  She was very divided and kept changing her mind.  Anyway she came to stay with us before her parents went back to work but decided today to go home today and stay with Uncle Haydn.  After around two hours we got a text from her saying she wants to come back.  Fortunately her mommy guessing this would be the case had made her isolate whilst she made up her mind so she is now back with us again.   Bike rides are on the agenda for them both and we are looking to buy her a new bike as hers is beginning to be a little small for her. 


I have ordered plenty of masks for us and Izzy as she will need lots when school resumes in around ten days time. New bedding is ordered as I saw some really lovely sets in M & S online and I also ordered new PJ’s. I have got quite an obsession with these as I must confess to spending rather a lot of time in them!    I have five sets sitting in a go bag in case of hospital admission and there they will remain until I pick up re my health again.  I only took five sets in last time and as I was  in for eight nights I did have  to wear some twice,  I hate this when in hospital, I like my shower and clean pj’s and of course as no visitors allowed no clean ones being brought in.   Yes I know I could wash them but I like them to be pressed too!  I am a bit finicky.  I kept wishing I had brought more from home. I also bought a jump suit or a boiler suit as Izzy calls it,  I was very wary of buying it feeling I would surely send it back but to my surprise both Colin and Izzy love it and I do too,  Though it does make me look stick thin it is very easy to wear and with a nice pair of pumps would be ideal for lazy days.  Very impressed with the cut and price too from M & S.  


One thing I am getting obsessed about recently are the tv screenings about farming families and communities.  I particularly love the one called Our Yorkshire Farm which shows the family of 11 pulling together to rear their sheep and livestock in the beautiful Yorkshire Dales.  Fascinating to watch children as young as 4 actually lambing the sheep.  (When this programme is on I generally prepare myself a snack of raw chopped cabbage with vinegar on it.  Colin hates even the thought and the smell and quickly leaves the room.  Vinegar smells vile to him. ) This family seem such a well put together team and the parents are doing a great job of teaching them life skills.  We are also enjoying very much Andre Rieu who is showing lots of his concerts,  We were booked for one in September and were eagerly looking forward to it but it has been cancelled now until hopefully next year.  It is still lovely to catch up with some of the concerts on the tv nevertheless.


Well all for now.  Once again I hope you all keep safe and free from not only the COVID but any illness as at this time we don’t want to catch anything at all.


Warm love to all.  I do try to answer any comment but those that go on the bottom of the blog on google sadly I can’t answer though I do get to read them. 


Carole xxx

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