THIS IS ALL MY FAULT. I am an idiot.

I cannot believe my stupidity that brought  me to how I am right now.   Something so very simple has knocked me off my axis and flat onto the floor.  I deserve this as I knew the rules about ph, knew what we could and could not do safely.  So why did I disregard them and think I knew better, that all would be good.  The only good thing about any of it  is that I thought I was doing good, believed I was helping my friend.  So now I pay the price and am waiting until my PAH stabilises  ( hopefully).

I have an iRobot vacuum cleaner.  I call him Robert and he has done an amazing job for me over the last thirteen years, working really well with very little maintenance.  His battery needed changing, a cost of £40 so I decided to have an upgrade of him and get one of the newer models.  I was telling my friend this and she asked that I give her my old model,  of course she would pay for the battery.  My new iRobot arrived as did the new battery for my old faithful one.  I changed the battery and cleaned Robert so he was sparkling and ready to hand him over to my friend.  She was too busy  to help me as she had a crisis on, and as Colin was very busy in our new house I decided that as I had been doing so well with walking etc I could do it.  I could bag up Robert and all his paraphernalia into two bags and take him to his new home.  She lives opposite us virtually in the park and up three lots of stairs.

The stairs would have been ok but the weight of Robert was not doing me any good.  I could feel myself getting palpatations as I climbed each stair and halfway I truly thought I would faint.  I could barely see, my vision kept going odd on me.  On reaching the top floor and her house I threw myself onto the sofa.  She was very busy trying to sort out a scam from Talk Talk so I just sat until I felt I could get myself home.  My bed was an absolute MUST place to be and there I stayed until Colin arrived home. As I told him what I had done he was rightly cross.  He would have carried it over himself later.  I truly believed I would feel better today but I really do not.  My legs are very shaky and my head very swimmy. My hope is that I have not put too much strain on my heart that it has caused irreparable damage,  Time will tell but I know for a fact I will never make that mistake again.  My life is more important than getting a vac to an elderly neighbour.  I will learn to say no.  My specialists know much more than I do about the can and cannot of ph.  I have learnt a valuable lesson.  No matter how well I feel I am doing I must still obey the rules of ph, I am not invincible.

( Two days later and I feel ok  I actually walked to our new house so I managed to get my steps in, feeling thankful)

Izzy

I took her to see an eye specialist as she seems to be leaning closer over her books wherever we read.  As I had my first pair off glasses quite young I am aware that even young children need eye tests early.  I have since had my own eyes lasered so have no need of them but she just might have.  Izzy was very nervous but she need not have been  The specialist has a girl of his own aged 7 so knew well how to put her mind at rest.  She did really well and at the end of the appointment he told me that her eyes were good, in his words they were 20/20 or even better if that was possible.  Now how can you get better than 20/20 I just do not know but anyway we all left feeling grateful that she is O.K. though she was a little sad as she quite fancied glasses!  So different to my day when we had the awful national health ones thrust at us until such a time as parents could afford something better.  

Her usual holiday in the motor home came to a disastrous ending after just one night.  Sadly all the rain meant the sites were getting very boggy and the first morning there was a knock on the door and a kindly warden told them that they were evacuating the site, all had to leave as the rains continued to creep up ever nearer.  Home they came, van unpacked again and as Colin was telling me all that had gone on, how hard he had tried to get another site Izzy just ran over to him, threw her arms around his waist and said "never mind granddad you did your best"  I am so thankful she accepts things easily.  Right now she is in Centre Parks with her Nana Joy and Harrison  being thoroughly spoilt and having a super time.  

She has been thrilled to see that the nesting box she made herself last year with granddad is now in use.  There is a family of Blue Tits using the box, the mother is in and out so there is much to look forward to when the eggs hatch and the babies appear.  We love her to appreciate nature but the cherry on the cake was that it was the box SHE made for her garden.  Still not got around to helping her to make a nesting box for a hedgehog but I think it will have to wait until the house is ready now.

House News 

Well this is really moving quickly now.  Upstairs electrics all in, all the insulation and windows are fitted and now they are plaster boarding the second floor.  Colin is very busy with the air control system and he has worn his thumbs down almost to the bone with the concrete.  His drill was not up to the job of some of the work so I treated him to a new one, a stronger, more robust that will easily go through the walls like butter.  He thinks a couple more days and his job will be done.  I know he will feel relief as this is a job never attempted before, very new to him and he has had to feel his way carefully so as not to upset the balance of the eco part of the walls.  I feel a little guilty as today is his birthday and he is working hard and getting very dirty doing this job but it as to be done.   It is not something I could help him with either which makes the guilt even worse but there it is, soon be over and our new house will all have clean air in each and every room on the hour every hour. 

When you get taken short!!!

Most of us with ph take some form of diuretic as our bodies struggle to do the jobs normally taken for granted.  Our organs are all compromised so we accept we need help to cope with certain functions.  I take 4mgs of frusemide daily to help my body expel fluids and it works really well.  On the days I intend to be busy in the mornings I leave it and take it later in the day.  However some days I forget this rule and take a tablet then pay the price, needing to keep running to the loo.  So this made me smile the other day as I was walking on the canal to my church.  Sitting nicely at the side of the canal some wag had placed a toilet in all its glory!  Now it will not stay there for so long as we have amazing people that keep our river and canal clean and neat.  For me though it brought a smile to my face as right as that moment I was just thinking I could do with spending a penny!  I think that the ducks and geese would not bother me whilst doing it but the thought of the walkers and cyclists definitely put me off the idea of making use of the facilities!!  I waited until I reached church.

PH News

I know I bang on about trying to exercise when you can, hard with ph I know BUT the benefits of managing to do some has been proven.  I also take a turmeric capsule that contains the curcumins that we need to help with our joints.  Like most patients my joints did suffer badly but I needed to share this with you.  Once taking the turmeric for the last two months I have felt such a benefit.  I take just one a day as this particular tablet tells me to take, I have LAMBERTS  High Potency but I am sure that any health food store can direct you to other brands.  Along with that I take Vitamin D as this is vital to help our hearts I believe.  I take it in liquid form, two drops daily giving me the correct dose.  

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Anyway I digress this was to direct you to the Pulmonary Hypertension News Weekly Digest and an article that shows patients with PAH outcomes are linked to exercise.  Do not throw the book at me if exercise is totally out of your wave length, I get it.  I still have my duvet days, my days where lifting a cup is too hard but when I feel up to it I like nothing more than to walk, even in the rain with my face lifted up to feel the rain on my face.  I love knowing that my heart, which is a muscle of course is being worked.  My core is benefitting too and all my body feels so much better when I have managed to get this exercise in.  Walking with sticks {poles} might be helpful and we are told that you actually burn more calories using sticks as you are pumping your body more.  

To be honest the calories burned do not matter to me cos I need to confess I eat more when I arrive home!  It is just the sheer exhilaration of doing something that is helping my heart and as talked about in the Digest it leads to better outcomes for us all.  I walk on my own but I also have a friend who, if he is not too busy walks with me.  It always makes the walks so much easier and the steps just melt away.  It is also a good indicator of how you are doing as you should be able to walk and talk at the same time.  

Keith Andacky who was the first patient to have Denervation in the U.S.A.  has had his four week check up.  All appears to be going  well and he is already walking a little further than his test pre denervation.  I am sure we all wish for him to continue from strength to strength.  The more people with this procedure that do well it seems likely that in time it can be offered to many PAH patients.. I know for sure I have benefitted greatly thanks to this and I hope the same goes for anyone else who has either had it or is heading that way.    Always lovely to have a new option on the books so to speak.  

So there you have it  Up to date again.  Once again thank you for reading.  I almost thought about leaving Facebook because of all the mess they are in due to sharing our details to others.  I came within a hairs breadth of clicking off but then I thought of the benefits I derive from it, the PH Sites I am on, all the friends I have made and the fact that I would not be able to blog either so I changed my mind.  I do know that Facebook really needs to get its act together now though as it would not take much for us to just leave.  We need protection.  

Warm love to each and every one of you, go well 

Carole xxx