IT’S ALL GETTING TOO MUCH.

Lockdown is over for many people but for the extremely vulnerable it continues,  Do I want to go back to life before lockdown whilst COVID is still around .......... no I do not so I will continue to isolate but I must confess to it getting on my nerves now,  I am so hoping for a vaccine but fear it is a long way coming yet,  The novelty of not having to bother to change out of pyjamas has gone,  I like to get dressed daily now  My hair is getting on my nerves and despite having jobs to do in the garden and house I long to be able to meet up with other people to enjoy meals out, coffees etc.  

Sadly too my health has deteriorated these last few weeks and this too has me feeling very frustrated!!!!   The selexipag that I was so looking forward to helping my health has turned on me and caused issues which now must be resolved quickly before my health worsens,  Fortunately as I have the machine that reads the chip in my pulmonary artery this has come up trumps and with the doctors able to analyse the readings we just may be able to sort this out sooner rather than later.  We are blessed with the medical team that keep in touch and write copious notes and compare etc to see where the help I so obviously need can come from.  A meeting this afternoon has hopefully come up with the means to help me feel better.

The issue is that though I got up to 1600 mgs twice daily of selexipag quite easily with just a few issues, the worse being the sickness and nose bleeds that were all encompassing  as I was getting  to the top dose, my blood pressure dropped alarmingly.  76 over 54 is way too low and so it causes breathlessness and fuzzy head etc.  This meant I was scared to do much as the fear of falling onto hard porcelain floors was great. Trying to walk became totally out of the question so once more my trusty mobility scooter took over from my legs so that I could at least get out on the trails with Izzy and Colin.  Each night I hoped for a better day to come only to wake up to the same, my  body did not like how much the med was reducing my blood pressure.  Everything has become a struggle and I have become rather lazy and lethargic due to feeling so lousy.   I am hoping that this will change.  We tried changing my dose of frusomide which is 80 mgs to 40 and indeed for a time to none at all but this only resulted in my being more breathless and my belly and ankles swelling up. Another negative is my oxygen dropping dangerously low and my resting heart rate climbing higher day by day,  All these things happen due to very low blood pressure. Life is becoming a nightmare and not something to look forward to.

The meeting today between my doctors has shown that my pressures are no better for taking 1600 mgs twice daily of the drug than 1200.  In other words 1200 is the maximum I need to get the maximum benefit. The extra just causes damage dropping my blood pressure too low.  One issue now is how to get the new dose as I have just been given the single tablet med for the first time!  So frustrating.  My hospital are doing all they can to get me the new meds here ASAP and I  should know tomorrow when that can be. In the meantime it would be dangerous to stop the drug and wait for new measure so there we have it,  I pray when I get my new dose things improve.  Time will tell.  So those on this drug strive so hard to get to 1600 mgs twice daily and for some it could be very damaging.  This comes as no surprise as when I was on the iloprost pump we were told there was no dose the same for everyone as weight, height etc had a bearing on what your body needed.  The reassuring thing for me now is that it will be fine for me to drop to 1200 mgs twice daily and hopefully will help my falling blood pressure.  We shall see. 

104 days and counting 

We have had our darling Izzy for 104 days, keeping her safe and enabling her parents to work.  Of course we love her to bits but must confess to looking forward to having time out now!  There is a reason childbearing age is where it is,  Colin does a great job teaching her lessons etc but is longing for time out on his long bike rides where he sees nobody, his thoughts all his own.  Now he constantly has a nine year old draped around his neck or her never ending talking!    It is how it has to be though but now in three weeks this will come to an end.  Our  son is moving into Izzys house next door and will take over for a week until both parents begin their holidays.  Of course we will miss her like crazy, her smile, her hugs and cuddles, her laughter bouncing off the walls but it will be the right thing to do for all of us.  On the plus side Izzy is at an age where she will always remember COVID and moving in with us,  I remember before her birth when I just wanted her to remember me and how much I loved her,  Through COVID we have had time together that would never have been in the “ normal world “ so I am trying to see a positive in this awful time we have all lived through and continue to live through.  I just want normality to return now though, not just for us but worldwide.  

Oh and joy of joys I have my colonoscopy on 28 th July to look forward to. I hope they have plenty of PPE  in place, very scary right now.  

Holidays that were planned have gone by as nobody can go anywhere.  It has been lovely though to see pics of lots of you having camping nights in the gardens, pool times, bbq’s etc.  It seems nothing has been able to dampen the spirits and I am so proud of all for making lockdown as fun as it could possibly be.  

Visit from family

Colins’ son and family came to visit from a distance on Father’s Day.  We spent a lovely hour together though of course no hugs or kisses.   We were telling how Colin made the most wonderful sourdough bread and the process it took to get the starter to perfection.  Our grandson Ben was intrigued so I suggested we gave him half of our starter - the discard -   I also suggested he and his sister make a simple soda bread.  They went away excited to try both, along with some frozen stewed rhubarb from my freezer ( prepared earlier ready for the arrival of our family from Poole coming to stay with us for a few days). This never happened as lockdown hit us six days later.  We have since been shown pics of the soda bread Ben and Phoebe made ( it looked delicious)  and told how lovely the rhubarb was in a crumble made by the kids.  Still waiting to hear about the sourdough and hoping it is as much a success for them as it is for us.  

We also had a visit from my daughter and son in law - they live next door - with a case of beer and many goodies from Hotel Chocolate for Colin, he did very well on Father’s Day.  It still seems alien to see family and not be able to get close, to talk from a socially acceptable distance but we all understand how necessary it is and must be. 

Colin and Izzy are going away for a few days to a farm owned by a friend where they can totally isolate but Izzy can ride her bike along the thicketed walkways, enjoy scooter rides and walks away from anyone.  She is not the most competent of bike riders so I hope she will come home feeling more at ease on it.  

She is doing a concert at the weekend for her friends on her piano, social distancing of course and we have asked her to practice but sadly all I have heard so far is her laughing and talking to her friends on the computer.  

I have taken to enjoying a drink or two a week of rhubarb gin and fever tree tonic.  Never more than two in around eight days but over ice it is a very nice drink.  I first tried this when away with friend in Bridlington in our motor homes,  As somebody who never really likes alcohol it was very refreshing and now I have half a bottle in my cupboard and a new one waiting to be opened.  Now when we next have our next ph conference, if it ever happens, I know my drink of choice.  

Well nothing else to say as lockdown has robbed us of many things but thankfully we are all safe and sound, we have all enjoyed each other’s company and kept in touch with friends ( though not as often as I should have I must confess). Let’s hope the next time I write a blog it is in happier times. 

It was lovely to get a catch up from Paul and Julia who bought our villa in Javea.  They were enjoying the pool in the heat of 34 degrees!   He wrote a very descriptive post and I could see myself back in my minds eye and see everything he had done or was about to do at the villa.  Here’s hoping one day we will all meet again there but in safety and enjoy all that Javea has to offer.  In the meantime here we are and I thank my blessings that bored I may be but the best thing is we are all safe.

Warm love to all and continue to keep well.

Carole xxxx