Wednesday, 12 September 2018

PH Awareness Week 2018 - and other silly bits!

Another important date for my diary.  This awareness week that is from 22nd to 28th October is very important to those of us either living with or caring for somebody with this rare debilitating disease.  I know many use this time to raise money for PH or try to raise awareness wherever they can for ph.  I was asked if I would do a blog for PH week and so was happy to oblige.  Not quite sure when it will appear on a ph page but there it is, finished and sent off.  We all need to keep on top of our game for raising awareness.  As our condition is so rare there are not many that understand quite what we go through, what we live through daily as we generally look so well.  We are also warriors and we do not give in.  I see by lots of the posts on Facebook that we sill wish to live a life as normal as we can and I am so pleased to see we did not give up the fight.

I posted a tongue in cheek message on Facebook after I had a tussle with changing our bed.  I was pretty exhausted before I began as I had just had my colonoscopy the day before and feel pretty sure that because of the necessary meds I needed that made everything go straight through me  along with that the medication needed for my ph went straight through too.   I felt very weak as I had to go 31 hours with no food. Hardly surprising that I felt so weak.  However the bed needed changing and Colin was busy as always down at the new house so I got on to do it.  Oh how I miss the days when I just had single duvets  to deal with when the kids were small.  Now these king  sized ones take some dealing with when we get out of breath!  I posted that after doing this I wanted/need a holiday and what had you done  to deserve one.  The posts that came back were amazing and showed that despite ph most of us could manage to deal with lots of things.  True some of you, along with me after the bed had been made needed to rest but well done.  It showed to me the determination that we have that we will not play the pity card and we get on and do what we have to do when we can.  Yes we do pay the price but by then the deed has been done.  I was so proud of my ph family when I read all the posts.

For most of us no anaesthetic with ph.

This one is a big deal for those of us suffering with other illnesses apart from ph.  I had a message the other day from a friend in desperate need of an operation to remove her gallstones that are causing her such pain.  Sadly her specialists in her country will not operate as they fear the worst due to her high pressures in her lungs.  I had to tell her that it is rare, though not unheard of to have any operations over here too.  I was told no way for one that would have rid me of constant pain and am still dealing with pain clinics to try to control what a simple operation would cure.  My specialist said if I were his mom he would advise against having any operation that involves anaesthetic.  Now before I receive posts saying I am wrong I know that in America some have ops, I know that in the UK some do too but the truth is it is very rare.  The reasons have to be such that the operation given would be worth the worsening of the ph levels that might happen if one were to have the operation. I know some have had successful results with no worsening of ph and I am so pleased but the specialists take an overall look and generally decide it is a no go for us.  

So sadly yet another hard thing to endure with ph.  Maybe one day there will be ways to operate that do not involve either the general anaesthetic or the injections into the spine.  My doctor told me that was a no go area too!  One day!!!!!!!!

Those darned trees!

The lovely elderly guy who owns a bungalow in front  of my daughter has trees so high that even from their kitchen, which is a floor up one cannot see the top of the trees.  He has said he refuses to cut them and as we do to want a battle on our hands the trees remain, even though they are an eyesore as very out of shape and some damaged.  The views over Norland are incredible but sadly they can only see tiny spots through the branches.  Their garden does not get very much sun so the grass is very squishy, however we have had a breakthrough.  This gentleman who is 94 has dementia sadly and has had to go into a home after he had two strokes and also set fire to his kitchen.  Very sad but actually he loves it as he has somebody to talk to all the time and it well taken care of.  

I spoke to his daughter who actually came to see us to apologise about the state of his garden.  We said we totally understood but then showed her the trees from my daughters side of the wall.  She was shocked and promised that as soon as it could be dealt with she would ensure they were either removed, the damaged ones or cut down to an acceptable level.  Also all the overhanging branches into the garden would be taken down.  What a result as the views really are magnificent.  When I read of ongoing feuds with families due to trees and edges I know how fortunate we are to have such an understanding lady who listened and was prepared to sort out this border.  We can't wait and hope by next year and the growing season the garden can be dealt with so the children can have a lovely place to play.  

Our house

We have four decorators working hard on the house.  The colour scheme was chosen eventually by daughter and my sons' girl.  The apricot we wanted for the kitchen and dining room was so wrong. We realised it when the decorator put some onto the walls.  Both my daughter Danielle and Anna turned their noses up when we said we were having it and both of them were so right for this house.  It would have been a disaster as the colour was way too warm for an eco house that should in essence never be cold.  So we needed something different.  My daughter chose a colour that we both love so on the wall it is, well first coat and it looks great and cooling,  For the lounge we put this over to my sons girl who chose colours we would never had dreamt of.  The effect we think is lovely, even the decorators remarked how good it looks and I can't wait to show you all on completion.  Our daughter chose the bedroom colour which is very simple but calming.  We chose the colour for the hall stairs and landing and that is coconut juice.  it goes well with our dark grey doors and our silver grey carpet, when we get it laid.  The effect when it is all put together should be nice as I did see a picture in a magazine, after we had chosen all these elements of another house with similar colours and it looked amazing,.  Of course when I show pics at the end you will need to remember that some of our furniture will be changed when we get the time to get around to it.  in the meantime we will just go with what we have.  Lounge furniture will not be changed as I love Italian furniture and so we will keep that but add to it.  

Not long to go now as silly things are being dealt with and the plumber has just about finished his jobs.  We were pleased to see the back of the tilers but in the end, once they realised we would not accept sloppy work they did a good job.  The trouble is they were reluctant to do a really hood job initially and felt we should be happy with sloppy work.  when confronted one refused to talk to us at all throughout the rest of the work.   Still the end result looks great so we are pleased.  They will not be missed.  

I am hopefully heading over to see my sons' girl next week who will help me pick out accessories etc for the lounge.  We need a second sofa for the lounge so she will help me with that also.  I hope all of this works out for the best as I will be sad to leave here but I feel sure it will.

Still not told the lady that will be renting our place off us to give a months' notice to her current landlord.   Though she is desperate to get in here we are determined we will not go to a house with loads of boxes to deal with in one go so when carpets are laid we will gradually move in, bit by bit until the day arrives that we can remove all the heavy furniture and our new bed can be delivered on the same day.  I have an appointment with a company that deals with curtains, blinds and shutters in a couple of days time so she can help to chose how to deal with the widow dressings.  i get too stressed out these day doing this, though at one time I would have loved it.  

Izzy turns 8 years old

I cannot believe that on diagnosis all I waned was to see my daughters baby, my grandchild and know if it was a boy or girl.  Well she will be 8 in September and thanks to all the care I am still here, still seeing her milestones as she goes throughout her life.  I have been blessed.  She has now gone up to her third year in school and is allowed to take her own backpack and not the case supplied by the school.  This makes her feel very grown up.  Though I love to see her grow I hate it too as I do miss my baby, the one I held in my arms and cuddled.  She is still at the stage where she allows them but I know the day will arrive when she will feel too old for many and I dread that day.  I still write her journals as she progresses through life, telling her what we have done together and creating memories,  I began this when she was very small so she would know how much i loved her and see no point in stopping them now.  Into her box they go and they will go with her when she is old enough to appreciate them and the love that went into writing them.  She is still my super star and one of the reasons I fight to do all I can daily. 

One thing we love doing together is snuggling under the duvet and watching Outdaughtered.  This is an American real life programme about a young couple who have six daughters, five of them quintuplets.  We love to watch their antics and how the parents are coping with all these girls together.  Last week we watched the potty training, yes actually it made us smile.  This week we will be watching to see where Parker disappeared to, one of the children who the family have lost somewhere in their house.  All trivial things but something we enjoy together.  By he way Colin hates this show and refuses to watch it!.  As Izzy is sleeping over tomorrow that shall be our time to watch it and granddad can do whatever he needs to do in the study away from the clamour of listening to five three year olds running around coming from the tv.  We will enjoy it anyway.   

So there you have it.  No lovely days out for us at this time, no holidays etc.  The house eats up all our time and energy but we have promised once it is finished we will take a holiday.  It will have to be in the UK though as I had that overnight stay in our local hospital.  that puts insurance out of the question for holidays abroad.  We are to go a year with no unexpected overnight hospital visits.  Once again we get penalised.  Oh well,  we love the UK and there is much to do even in bad weather.  

Thank you for reading and most of all thank you so much once again for taking the time to comment or click like.  It matters, it really does.

Take care and take my love with you.

Carole xxx

Monday, 20 August 2018


I am really exhausted at the moment.  Whilst it is easy for any of us to blame our condition the reality  though  is I am exhausted with the house though we are moving on, albeit it slowly.   Our plumber will arrive in a week to fit all bathrooms and our tilers will return to finish what they have not completed.  Decorating is now going on where we can and the builders have moved all their things into the garage as the house itself as far as they are concerned is finished.  There is still sone electrical work to be done and I need to make sure I tick off each and every thing on the list when  am taking over from Colin when dealing with the electricians.

Outside work is still going on as they are building the  base for our motor home to sit on and also the rest of the drive.  This should not take too long.   Then comes the task of cleaning!  Though they do a quick clean of course it will not be as we would like it so that will be some task,  oh the chunks of plaster on all the tiles   Our carpets are being ordered in a week so once decorated they can go down immediately.  My concern is the beautiful render, polar white which has quite a few hand marks on it already from the builders.  I am not sure how to clean this without driving the dirt inwards and making it worse.  If anyone has ideas do tell.  Once cleaned we will have a firm come out to coat it with a protector so the dirt rubs off it.  Only then will come the task of creating a garden!  We  will put that to one side for now.

Though of course I am looking froward to the move  I will miss living here. The freedom to walk away knowing all is safe, neighbours that know everyone, the friendliness of us all, the convenience of being round the corner from the hospital and a 15 minute walk into the town centre.  The park opposite and the moor just above, we have it all.  Why are we moving!! Well in a word Izzy!


Izzy is on holiday now in Turkey with her parents and Harrison, her step brother plus really good friends Jamie and Abbi and their two children.  For all sorts of reasons it will be nice to live next door to them  Izzy can come and go and if I should progress downhill in my ph then the family will be next door to hopefully lend a hand.

We have also come in handy these last two weeks to babysit their two rabbits.  As we are at the house daily it seemed silly to ask somebody else to look after them so we took on the task.  I baulked at cleaning them out as they have a huge shed plus run so no way am I cleaning out all of that.  It was not expected of me anyway.  They will be fine as the family arrives home soon and will take over.  The rabbits have been treated to such extra delights as we cook with different veg from my daughter so they have had a nice different selection to eat. 

Izzy has been having a super time and she does keep us up to date with a few things as she took her iPad so she could keep in touch a little.  She will only be home a week and then holiday time with granddad.  I shall then take over at the house to deal with the tilers and the bathroom fitter.  I can always ring Colin if there is a problem so I think all will be well and he will get a well deserved time out.  I was going to say rest but the two of them do so much when they go away that it will not be restful.  At last Izzy can ride her bike so bike rides are the order of the day.  Another scoop for granddad who taught her both to swim ( she was doing very poorly in swimming classes until he decided to have an hour in the pool before her lessons with her - she is now a very accomplished swimmer}and now bike ride.  He envisions lots of times just the two of them riding the Sustrans bike trails.

It's a Fiasco

Have they no pride?  As you all know we are having a new house built.  There have been problems along the way as one would expect but by and large it has not gone too badly - that is until last week..
Our tilers appear to be a law unto themselves, coming  and going at all times, going outside at all  times to light a cigarette or drink a cup of coffee.  They rarely seem to be doing what they are employed to do which is tiling.  A job that should take three or four days has taken them weeks! 

I walked into our en suite and was appalled at the state of the tiling around thwindow ledge.  The ledge itself now tiled had  a slope to it, up at the right side down at the left and a slope backwards into the window frame. The tiles were chipped too and looked such a mess.   It was truly appalling.  I immediately told the tiler I would not accept it amd what did he do re the chipped tiles?  He got a felt tip pen and tried to cover up the chips!  The pen reacted with our tile which is metallic and turned red!  So here we were with an abortion of a tiled window and instead of silver and copper one had a red edging!  Of course it all had to come out and Colin told them how to get it all straight and satisfactory and he took the tiles that needed cutting correctly under the window to a specialist tile place that cut them beautifully.  In the meantime the tilers complained to our builder about us being too picky!  They were paid by the metre  and to replace the mess they had made cost them money,  Of course our complaints were validated when we showed our builder the state of the window ledge,  All is done right now but once again they have left our job for at least ten days to do another one!  We are speechless. 

PH and Ferrinject

Once again my ferritin levels are low so this involves another infusion of ferrinject.  Also my doctor is surprised that I am low on ferritin and yet not anaemic.  It seems to be part and parcel of ph.  Many of us go through this and we are not quite sure why this happens.  So once again a hospital visit, though as I am asthmatic I get the infusion that takes only twenty minutes which is a blessing.  Other ongoing tests I have coming up will be going ahead shortly and I hope to have a clean bill of health if all goes well, other than of course pah.

Our lovely break with friends

Once a year friends of ours Ralph and Katy Phipps organise a walk for any Costa Blanca Mountain Walkers who are home in the UK through the summer.  We were invited to join them and to stay overnight at their beautiful home with two other walkers Geoff and Sonia so we could all leave together the following day.

On our journey  down to our friends we decided to spend  a while in Buxton.  This  is a spa town in Derbyshire.  It is nestled in the centre of the Peak District in the UK's oldest National Park. We have been here quite a few times so we knew how beautiful the town is with its Georgian and Victorian Architecture and many theatres and festivals.   There are a wealth of shops too for those that like to browse and many pavement cafes to sit and enjoy coffee or ice creams. We found a quiet spot in a tiny park and it was here that I sat away from prying eyes and pricked a huge blister on my toe I had earned from walking the day before in the wrong shoes!  I felt it would be madness to begin a walk with a blister so it had to go.  Job done and a plaster on to protect it we ate lunch of sandwiches and fresh berries.  Very nice too.  I have many happy memories of this town as we visited it a few times with the "troops" as we all call each other, we are a group that go motor homing together.  No time to dally here though as it was off to meet up with our walking friends.

After a pleasant time spent reminiscing with Ralph and Katy and Geoff and Sonia about our beloved Spain and a lovely meal in a local pub it was time to go to bed and sleep ready for our walk the following day. We met up with everyone else that wanted to join us and it was so nice to see old faces again, in total there were 17 walkers.  I was a little bit apprehensive as these walkers were a lot fitter than me.  I was assured that there were stopping points where we could stop our walk and leave the group so reassured off we went.  The walk was undulating over beautiful countryside and the scenery was just beautiful.

Lunch was eaten in a dip on the moors and we were surrounded by many bilberry bushes.  Most people sat in pairs to eat lunch and I think reflect on the beauty surrounding us.  Ralph is a super leader and is aware at all times as to how people were coping and counting all heads!  I was fearful of letting down the group but I was told there was no such thing as letting down, if it got too much for me we simply left.  Well dear readers  {to quote of my favourite authors Jane Austen} I must confess -  I did it!!!!!  I completed the walk along with 16 other competent walkers and I did not let the side down at all.  A drink and a piece of cake was a just reward for all of us and we then came home we me feeling jubilant!!!!!  At the start of my ph journey there was no way I could walk across a room let alone complete this walk.  I know I owe all this to my doctors and nurses, researchers etc and of that  am eternally grateful.  Now a confession, I spent the following day in bed so there we have it, we can push but we pay the price.  Was it worth it, of course it was, every bit of it and I look forward to more walks with these people.

So it was back with a vengeance to the new house and all it entails.  The finish is in sight though still lots of hard work to do for Colin who bears the heavy load.  I will keep you updated.

Warm love to all for now, and thank you in advance for any comments, most welcome or likes and shares.

Carole xxx

Wednesday, 1 August 2018


They took their time

At last, after weeks of frustration, phone calls, promises and excuses we have been re-connected to our broadband provider.  They cut us off wrongly believing we were moving.  Though they admitted the mistake was all theirs apparently it takes weeks to switch people back on again.  Our frustration grew daily as hours were spent speaking to different people.  We were allocated our own case worker who was about as helpful as a snowman in a furnace.  To be honest we had begun to believe it was never going to happen until we moved into our new home.  One morning Colin said he would try to see if the promise of broadband that day had come to fruition, {they were promising it daily over the weeks} and were shocked to realise we really had been re-connecrted at last.  So here goes for another blog.

PH Figures

The latest figures out for the U.K. show just 2567 people suffering with Pulmonary Arterial Hypertension. and around 5000 suffering with Pulmonary Hypertension.  I do not know if the figures are correct but they cannot be so far out and it does show to the world how very rare we are.  I would rather not be in this rare position as I am sure none of my ph brothers and sisters would not but there it is.  Maybe because it is so rare we can make excuses for the hospitals that have never heard of it but I feel that there does need to be more done to bring our condition out of the cold and into the warmth. We are still seeing people that are new to this group in despair after endless visits to their doctor being told they are depressed, or have asthma, or to try to be less anxious when they describe how they feel.  Most of us felt the frustration when we KNEW there was something badly wrong and we kept getting fobbed off by our doctors.  I even had an x ray and they showed me a black space in my right lung and said they were not sure what it was but felt it was not an issue!!  Blindly I trusted them and it was to be a further three years before my diagnosis by which time I was extremely poorly.

We all do all we can to raise awareness for ph and that is all well and good but we need more, we need doctors to be taught about this disease even though they may never see a patient such as us.  The fact is they may and that could just save a life.  I wonder if anyone of us can really remember what it is to breath easily, with no effort at all.  I know I cannot but it does not stop me being determined to live my life to the fullest, to the best of my ability even with badly impaired lungs.  When I do too much I accept I need to rest up, nobody will stop me trying to do the best I can.

I saw with interest on the Pulmonary Hypertension Weekly Digest that PH patients seen to have little exercise leads to lower odds of survival!!!  Well of course we all know that but sadly some are just not able to move from their chair.  I spent a year lying on my sofa.  I know myself that on the days I do not get any form of exercise in I feel really bad, a proper ph day so I do my best to do what I can.  Now seeing it in black and white it really is scary. 

Setting off on day 1 of my holiday with my trusty PH bag.


Yes it was just for a few days, we could not afford to be away from the new build for too long but what a time we had.  After an overnight stay at Kendal and a lovely walk by the river into the town centre where we enjoyed a drink listening to the sound of the water meandering slowly past us we moved on to Keswick. I said in a post I walked all around Derwentwater.  I did pay the price the following day but it was a price worth paying.  As always I am looking out for things en route to go into my own memory box and I found a few.  We stopped for a drink at the beautiful Hotel  at the bottom of the lake where it was obvious a wedding was about to take place.  

Though we did see the groom and some bridesmaids alas we did not see the bride.  We did however see this stunning car belonging to a wedding guest.  I thought about George Gaskin and his love of cars when I saw this stunning one.  I loved that their disability badge was propped up in a vey prominent place  for all to see. It looked a little out of place on such a car. 

Further on around the lake ( and I should say here that the water was lower than I have ever seen it before} we stopped for much needed  refreshments, beef and beetroot sandwiches and a wedge of fruit cake with a slice of cheddar cheese. so very welcoming and deserved.  We so needed this as the heat was getting to us so we sheltered under a tree to cool off and enjoy our feast.  

Only a few metres away we came to a gate that said Rupert's Wood on it.  My mind went into overdrive.  Who is/was Rupert, a dog, a person whose ashes were scattered here.  I know there are quite a few people on here who regularly walk the lakes so if anyone knows the answer please do tell.

The Shack.

I could hardly call it anything else.  It was rather ramshackle and pretty dirty but was full of postcards from all over the world addressed to the Bear in the Woods.  In the picture you should be able to see a rather tatty bear looking out of the window surrounded by these cards.  It does say that the money donated is sent to dog and cats homes and there is a small slit for people to donate through this, plus a lot of the cards said they were sending a donation.   Due to the number of cards, the years they have been arriving right up to present day then this place is a must to see when walking around this lake.  It cannot be missed as it is right on the path. 

The last three miles I must confess were really hard.  We stopped for an orange and a sit down and a breather for me then onwards towards the Theatre on the Lake.  We decided to go over the field to our camp site rather than go into town but it was still around the same mileage and Colin had to almost drag me home. (after saying that I must confess that there was some kind of regatta taking place and this big field had lots of tents selling lovely things.  No matter how tired I was I just had to look into them.  Wes bought some home made fudge (liquorice which is a first for us) which now sits in our freezer until we feel we fancy tasting it. 

Our days were spent walking and sometimes browsing in the shops.  We were enjoying the gorgeous scenery surrounding us.  The weather was lovely and the atmosphere everywhere very buoyant as we were doing so well at the football.  We did not need to watch the match as we could hear the screams of excitement coming from the pubs when a goal was scored . I did order a name plate in one of the tiny shops that make them right in the heart of Keswick for our new house " Tranquility" which has arrived and looks really good.  Made of slate and with the name in old fashioned English it looks a picture. We are not putting this up yet until all outside works have been carried out.  

We had intended to drive round to a few other places but to be honest we were so enjoying being back here we decided to stay put.  Colin comes here every year and parks the motor home on the edge of the lake and does his walking, biking and photography. It is a lovely site and only a few minutes walk from the town centre, a perfect spot.  A lovely visit from Paula and Neil,  Paula  Joanne Burns is a ph friend made our holiday one never to be forgotten.  I love our motor home as we have the freedom to choose where we go, do we stay or move on. 

One day we took a walk around the edge of  of the lake by our motor home and we saw a little boy, no older than 4 playing in the water.  we heard a scream and looked back and he had gone down a big dip right into the water so deep it almost covered him.  Of course we ran over to help him and we saw his daddy slowly meandering down to offer him assistance!.  It could have ended badly but fortunately it did not.  Water has to be respected and at his young age an adult should have been no more than a few feet away. Children are never far away from danger.

Sadly all too soon we had to return to reality and see how far our house was progressing.  It was hard to leave as we could both have done with a way longer break but time and tide wait for no man and certainly we knew there was much to be done at the new house. 

Our new home

Yes the progress is going quite quickly now.  Our terrace is all nice and covered with lovely paving slabs all in beautiful colours so we at last can sit out on it when the glass wall is added.  Inside the house our kitchen is in totally now though we have not put into situ the electrical appliances, preferring to keep them boxed as builders do not take care of things we have found.  The electricity is on, though not totally finished yet and tiling is going on in all places that require tiles ready for the bathrooms to be fitted next week.  Our unnecessary but indulgent fireplace is being fitted this week along with our security system.  Once again we found ourselves cleaning up after all the builders as they just throw their boxes of food, cups, old papers  etc on the floor when finished with.  they really are pigs and one wonders how they go on at home.  Yes it is a building site but still we feel they could have some respect for us.  That said we do get on well with them and they are as helpful with other things as they can be.  We just wish they would contain their rubbish in one place and also sweep up after they have been cutting things instead of trailing sawdust everywhere.  It may sound petty but honest, if you saw the messes we have to clean up you would be shocked.  Even their boss is disgusted with them and is constantly telling them to tidy up the site.  His words go over their heads.

We had a fire in the garden last week clearing up lots of the rubbish and burning it.  Izzy loved this and it was very satisfying way of getting rid of it instead of doing tip runs.

The lady that will be renting our apartment from us had been pushing us somewhat as she wanted to get in.  Sadly on our return from holiday she came to see me to ask me not to rush now after all as she had had some bad news and things needed dealing with.  It transpired that her estranged husband had died and she was the one to have found him.  This was such a shock and she has to deal with all of this so a house move has taken a bit of a step back.  Of course the news was terrible and my heart went out to her. but the fact we no longer feel we need to rush has been a relief.  I saw her last Sunday and she just wanted to make me aware that she still wants our place and begged me not to let it to somebody else.  I keep reassuring her that of course the place will be hers.  

School holidays

Yes they are here again and so for most of it, except for two weeks we have Izzy.  Tomorrow she is going to help me to cook and bake, something I rarely do any more as Colin has taken on the role so it will be interesting to see how well I fare standing up for whole lengths of time whilst not moving  Strange that if I am moving I do ok as you can note by the fact I walked around the lake.  Standing in one place and it must be that my oxygen levels drop and I do not do so well.  We shall see how I go on.  Izzy does pretty well at peeling potatoes, with a peeler not a knife and she does all other veg well too so with my own little helper it should go ok.

Just before the end of term we were invited to school to hear recitals from quite a few of the children that were learning how to play musical instruments.,  She has skipped one book as she plays the piano pretty well, fortunately she seems to have found her forte.  Our hearts swelled with pride as we watched her perform what appeared to us to be a rather complex piece where she had to cross her hands to play part of it.  Well impressed!   So we have this gorgeous girl every day until they go away. on holiday.  To that end I have been buying new games.  Though her favourite is still snakes and ladders I am so tired of it.  One of the new ones is called Pigs in Pants, a game involving pinching pants or knickers off pigs, a funny game and we now love it.

A few hours on and biscuits baked, chocolate buns cooked and frosted, a big pan of homemade chicken and veg soup (which Izzy declares is the best in the world }and meat and potato pies made ready for when needed.  The day has gone well and she did help me a fair bit.  A few times I felt really rough so sat down until the moment passed.   A successful day I believe. 

Day following and she went with me for my blood tests, she is not impressed with this procedure but the fact she was given a lolly after it made her like it a little more.  Quite why she got the lolly and not me who had the blood drawn for my liver function tests  is beyond my comprehension but never mind, I forgive her.  

Stacie Pridden

Please send out good thoughts and wishes for Stacie who is in hospital after her lung collapsed, the same lung she has constant issues with.  She hates hospital stays but Mark as always is by her side and she does manage a smile for the camera.  Stacie has endured so much since her transplant and now in rejection, with no hope of another transplant I hate it when she has to spend her time on yet another ward, with yet another issue.  As always though she shines through and her fighting spirit never leaves her.  Go well Stacie and be home soon.

Right time to talk to Colin about how his day went down at the house.  Our fireplace has not been fitted after all as they had to finish a job they did not compete on Friday but our security system is now up and running so one thing ticked off the list.

Thank you for sticking with me, I felt so bad when I could not keep in touch. Please remember to click like, or comment if you will.  It really makes such a difference.  

Wam love to all

Carole xxx

Thursday, 28 June 2018


An English /American Drama

So much going on around here right now.  If one decides to go for a coffee in our park you are likely to brush up against the likes of Suranne Jones, Game of thrones star Gemma Whelan, Timothy West and Pete Davison to name just a few well known faces.  The reason is that they are filming Gentleman Jack, the real life story of Ann Lister  who lived in Shibden Hall and was a lesbian long before it was acceptable, all kept very quiet in those days.  Ann was a fascinating woman who kept diaries and wrote about her lovers in code.  She was a mountaineer and a traveller who was fortunate to have inherited great wealth from John Lister.  If you are interested in things such as this you can find much about her on google.

There is an enormous marquee on our moor that took days to prepare and many lorries declaring they are tv crew dotted all around.  I love history and as Shibden Hall is in my town and such a lovely place I am so looking forward to watching this  Drama when  it comes to our tv screens later this year.  I do hope others who read this blog look out for it and watch it too.  It is eight series long so for sure my tv planner will be switched to record each one.

Raising Awareness for PH

This is a constant with me. Whenever I can I like to use my backpack given to all here in the U.K. who attended our conference. Bright orange it certainly stands out and the words PH can be clearly seen.  I have had some people ask me what it meant and I am always happy to tell them, to show that there are hidden diseases in the world that are so devastating.  I have also ordered from America a T Shirt with, I b believe, 365 names on it of people like myself who are suffering from ph.  I think this is the second shirt that has gone on sale like this, though of course different names.  I can’t wait to wear mine and as I type this it is winging it’s merry way to me from America.  I would love to hear from those who already own one if you have had any comments when wearing your shirt.

I think one thing that unites us all with ph is that we are tough.  After the initial shock and horror of being diagnosed with a life shortening disease we show the world just how tough we are.  We cope with so much from day to day that a healthy person can have absolutely no comprehension of as we try to hold it all together, to show a different side.  I am proud to belong to groups of my ph brothers and sisters world wide.  We will fight as long as we have breath in our bodies, through all the horrific side effects of the meds just so we can live another day, week, month, year.  There is also the hope that we do not succumb to this disease, that the cure is around the corner. So talking about meds it leads me nicely on to ........

Our admin Nicole Burish

Congratulations to Nicole who has now transitioned over from her pump to oral medication!  I did this seven years ago so I know well her jubilation.  I think it took three days to transition over, she said she suffered a bad headache initially but a small price to pay.  Her aim is the one we all wanted when on the line which was to go into swimming pool or take a deep bath. She will now be able to do all of this without fear of infection travelling down the line to her heart.  Oh and Nicole, the joy of getting rid of all those gloves, the syringes, the lines, the swabs and everything else that goes with the mountain of equipment needed for the line.

It is fair to say that it is not always easy coming off the line and there is a tine needed to get used to the changeover.  Nicole herself as well as the headaches  is suffering pretty badly at the moment with a stomach ache that feels like "her belly is on fire".  She is in touch with her ph team though so they have told her it is to be expected at this stage of transition.  She is a trooper I know and will cope until they subside and her new life begins line free.  Even with the side efforts she has she feels jubilant and can barely believe that after three years she is now unencumbered with the line.  We need to remember that it is thanks to the line that her heart has now reduced in size and her pressures have dropped significantly to allow this.   

So take heart those of you still on pumps, or just beginning your journey with the pump.  It may not necessarily be for ever, nobody can say until they see how your pressures drop etc.  I know that I personally wish Nicole all the best.  Most of all I wish you enjoyment of now being able to do the things you have been excluded from with your son.  Go girl and enjoy.  


At last the day  has arrived when I go for my injections into my vertebrae, my hope is that this time it works as the last ones did not at all.  Over time my pain intensified so that it curtailed my every day life to a huge degree.  I hope that now this can change and I can get back to my own normality. Pain, as you all know, is such a terrible thing and of course we are limited in which meds we can take to try to ease  it.  I must confess to overdosing a time or two but hopefully no more, please hope with me that this time the result is a pain free existence for some time to come.

(Home now from my injections.  I told him that the last ones did nothing at all so this time he delved around quite a bit trying to get right into my vertebrae. He said often patients do well with it just running along the top but clearly it does not work for me.  Playing the waiting game now to see how it goes. )


Our house  build came to a standstill except for outside works all thanks to one person.  That person is a plasterer who had a few personal issues so we did not see him for two weeks.  In that time works that should have been carried out had to be put on hold.  Joiners could to get on with their work or electricians, nor could any of the plumbers.  We were devastated to go down day by day believing his reassurances that he would be in only to discover he did not make an appearance.  Consequently all internal works stopped. Yesterday we discovered that once again work is going on, he is doing his bit with his uncle ( who owns the plastering company } coming  to help him when it comes to the very difficult parts of the walls and electricians were buzzing around fixing lights to the outside walls. Two people were at the front door erecting our porch so once again we are thankfully on the move.

We had a mishap when the tilers finished tiling the upstairs bathroom and it was awful.  We went in and Colin began to tidy round and saw to his, and my despair, that the stone resin shower tray had a crack in it.  It was not in when it was bought so quite how it happened we have no clue.  It could be down to three services, One thing for sure though we need another one so that is now in hand.  Fortunately  we saw it early on so that the tilers could come back whilst the tiles were setting and take the ones surrounding the shower tray up.  One step forwards two back springs to mind right now.    


Izzy found this lovely small stone on the park the other day.  On the back was a few words to say to log onto Facebook and show your stone or rock on a website and then put it somewhere else to see how far your rock travels. Needless to say we are now looking for suitable pebbles or rocks for her to decorate and see how far they go.  I saw one pebble left Huddersfield and ended up in New York so some kind soul obviously travelled with it and placed it to be find across the waters.  I am quite looking forward to finding out the journey of the stones when we get around to doing them. 

We cannot wait until this house is done.  We do not have any free time to go away on holiday as days are spent with Colin running backwards and forwards between the new house and this apartment.  I think he is too meticulous and there is only one decorator he can trust and he is on holiday. He likes his painting to be done "right" .  The preparation takes quite a while before any real painting begins.  Though he tells me that is the most important part and I know that is true.  If it was left up to me it would be a more slap dash affair.  So we wait, whilst all this good weather passes us by. I envy those living at the coast as you will get the breeze we do not here and it is baking.  

So away I go again, a few bits of news but nothing exciting.  Can't wait for the day we get off and do more enjoyable things, it will happen.  To  be honest the first thing i am really looking forward to, and it sounds daft, is the very first time Izzy opens her gate and walks up the path to her second home, ours.  After all it is what this has all been about.  

Please if you can click like or comment so I know I still have you in my corner!  I am aware I do no write as often but can only write when I have at least some small thing to write about.

Warm love to all [ and my it is warm in the UK right now and fires burning strongly on Saddleworth Moor in Lancashire. the place where the evil Brady and Hindley buried their victims bodies.  } It would be wonderful if because of this the burial place of the last body came to light and he could be laid to rest in a friendlier place.  

Carole xxx

By the way the toe is doing OK ish  Strapped and painful but not as bad as it was.  Happy to feel it begin to heal.  Thank you all for your suggestions and your concerns.  

Sunday, 10 June 2018


Anna Caroline Bowen and Hickman Line

It was such a lovely post to see last week after  tests  showed that thanks to her hickman line and the iloprost she was receiving through it her pressures reduced so that instead of the level 4 when diagnosed she is now at level 2!!!!!!!  I wanted to write this so that those facing the trauma of the line can see the generally,,no I can't say for everyone but generally the improvement is really good.  I myself was on the line at level 4 and came off it at level 2 after 12 months, plus the transition over to oral meds.  

I do think that sometimes the thought of the line scares people away from it and I really get that but when we see posts such as these it can make others see that they can have a better life if they trust the specialists.  Once on it  then of course the hope is that the meds, delivered every two minutes close to the heart can have such an amazing effect. Neither Anna nor I can say it is all plain sailing but then it is not with any of the meds cos at the end of the day we do have ph.  I still believe that our specialist doctors know best for us and we should heed their advice as Anna did.  So go well Anna.  She says she feels so much better in herself and can do more so what a result.  As a mom of three, two still at home what a blessing.  Of course she will still have her ph days, who of us can say she will not but the results are in, her pressures are lowered so I am so happy for her and her family.  

Anna says she would be happy to speak to anyone with young children as that seems to be an issue with them and the worry of the line.  If you want to talk to her you can get her on Facebook.  I have said here before that Izzy spent her first fifteen months of life with me having the line in, though for three months it was a line only and no pump!  She used to twirl her fingers through the line, I never had a mishap with her playing with it but  it did transpire on removal that it had been sewn in so tightly it was hard to cut out.   

Anna still has hers so is more up to date with any news about it.  Please please do not hesitate to contact her.  She really wants to help people regarding ph so in actual fact it would make her happy to help you if you are trying to decide whether to go for the line or not, or indeed problems that might occur with the hickman line.  

My Mom

I can't stop thinking about my mom these days and I am wondering if what I said caused her death earlier than it should be.  My mom had dementia, not too bad but there it was.  She was taken into hospital as she really was not well.  She would not eat, she said everything tasted too sweet.  This came from somebody who always had a sweet tooth.  She was so small, so fragile.  I would make her fresh soup each day and take it to her but she said even that was sweet!

We all visited her so she was never short of visitors and we laughed a lot about the things we did as a family when we were younger.  I remember her sitting up in bed saying didn't we have a lot of fun when we were all together".  Though she had previously told her neighbour she had had enough she wanted to die she was really happy in the hospital, surrounded by all her family.

We knew the end could not be too far away.  They talked to us about palliative care, we are not stupid people so we knew what to expect but I think I brought it on sooner and I feel such guilt.  She told me one morning that her foot was very painful.  We could see no reason for it but I asked mom if she wanted to have some painkillers, I was thinking paracetamol etc.  She said yes so away the nurse went to write it down and to get a doctor to agree to it.  Unbeknown to me then they began to give her morphine!  I would not have agreed had I known that.  When I next went to see my mom the following afternoon she was not herself at all acting drugged up, as indeed she was.  Her memory was not good and her speech blurred.  

Shortly after this she was moved into a side room and she deteriorated quickly.  I remember standing with two of my brothers when they wheeled her past us for a shower and she was slumped over in the chair.  I cried and asked if it was wrong to wish for her to die.  meant it in a kindly way, I did not mean I wished her dead were she ok but it was obvious our mom was no coming back to us.  In days she got worse, she just slept.  We all continued to visit to talk to her but in the end the inevitable happened and she died.  Now  feel such guilt.  Had I not asked for an pain meds I truly believe she would have lived a few weeks longer.  I feel  I denied all the family more time with her and I must admit it haunts me,  There is nothing I can do, no going back but the guilt is with me and always will be, sorry mom.  

Feeling pretty good regarding my lungs   

I am trying to come off my gabapentin that was prescribed at the height of my neuropathy when trialling DCA.  I am now on a low dose but it does not help my sleeping at all.  I am regularly awake in the wee small hours of the night and of course our minds go into overdrive.  I keep thinking about  the new house!  Regarding my ph though things are pretty good.  I know my breathing is so much better since my denervation and seems to continue to get better even more so since my last test in January. after the procedure.  I am blowing almost 500 on my peak flow monitor which is pretty good.  I must also confess here that I am taking special note with my sildenifil and ventolin.  In particular with the ventalin i make sure that with each puff I draw it deep into my mouth for the recommended 10 seconds in order for the dose to reach into my lungs as far as it can.  I certainly do feel the benefit of doing this as before I was performing this task very perfunctory and know I did not do the ten seconds advised by my specialist.  Once again it is a case of our specialists can do so much but we must do the rest ourselves so I am taking all their advice seriously. 

I am aware that I was blessed to be given the opportunity to have the denervation and want to do all in my power to show that it was deserved.  It is doubtful now that I will be in a position to trial now as my pressures are pretty good so I will miss that.  I loved taking the meds in the hope that this one was the cure for us all, that the breakthrough had arrived!  I do love hearing about the trials that others are on so please keep us all up to date with how you are doing.  

My spondylitis is still giving me a lot of pain but not as much as at first.  I can at least type so that has to be better.  I am hoping for an appointment at my pain clinic.  Indeed we received a message yesterday advising of an appointment at our local hospital for next Friday but as the pair of us are both waiting for appointments for various things we do not know which appointment it is.  We hope to receive a letter on Monday telling us this or failing that we shall have to do some sleuthing.  If it is me then I really should come off my warfarin five days before so just in case I will stop taking it until we know.  

The house

Well this moves on now at a fast pace I am happy to say.  We have builders, joiners, plasterers etc crawling all over the place.  One result is that when the digger was in digging out for the paths etc we saw this as an opportunity to go in and pull out all the bushes that had been in what was termed by the previous owners as the Secret Garden.  None of the foliage in it would have worked with our terrace and he thought of digging up all those roots was just too much.  In ten minutes he went in and lifted them out and then pulled all the earth we needed shifting into situ.  Well pleased with this.  

We are almost at the end of ordering all things needed now by the builders and fitters  Just the smaller things to think about such as lights etc.  We did worry such a lot over the internal doors and have changed our minds again and gone for something so far away from our normal but feel that with this house they will work very well.  The granite we chose for our kitchen we actually saw in situ last week on a display kitchen and HATED it!  Fortunately we have been able to ring up and sort this out.  Monday we will go over and choose a different one.   So relieved we saw it like this as we would have found it to difficult to live with once competed.  The kitchen was to be delivered next week much to our horror but fortunately there was a mix up in Germany between them and the delivery company so now will be delivered to another address in Manchester.  When we are ready it will be delivered to our new house.  

There is not a lot we can do there right now so we intend to work out how best to fit out wardrobe which is very big so we have a lot of scope to deal with it on that front.  Here is a picture from the dining room window, excuse all the builders mess but the views are stunning so we can't wait to get in.


So proud of this little girl who is doing so well at her piano lessons that her parents have decided to send her for some private ones.  How I hope this is a talent that grows with her and not a flash in the pan, would love to play the piano myself.   She had a fall three weeks ago after her swimming lesson and though grandad brushed all the dirt off her as soon as he could and her mommy washed her well when she was home she still must have had some dirt hidden deep in her thumb,  This caused her a lot of pain and though it was bathed often in TCP  it continued to be a problem.  It is beginning to get better after being given two lots of meds by the doctors which is a relief to me as i know sepsis can enter the body by something like this.  She gets excited whenever she sees changes to the house and is looking forward to her bedroom being decorated. 

I am so sorry for not  being  around for some time but I know you understand how it is.  Pain is an evil thing and I just found it hard to cope with it. Thank you so much for not abandoning me, I had so many messages, both private and public and also long telephone calls, it was very kind of you to continue to ask how I was feeling.

I send warm love to you all and once again hope you are all doing as well as can be.  The weather is glorious here so I am going to take a shower and go and sit in the park. 

Carole xxx 

Monday, 14 May 2018


Seminar for new insights into pulmonary arterial hypertension

How I would have loved to attend this particular seminar.  It is being held at the Royal Brompton and Professor Martin Wilkins from the Imperial in London along with Stephen Wort from the Royal Brompton are talking about all their ideas for new treatments and of course their hope to find us a cure.  I was fortunate to be in the care of Martin Wilkins for the DCA trial and I know well his commitment to bringing us all a cure for our shocking disease.  Sadly we have decided it will be just too much.  A trip to London from where we live is not just a couple of hours car ride.  It would also mean staying over in a hotel and we just cannot afford the time as our house continues to take that up well enough.  The parking sounds a nightmare at the hospital and the trains and tubes can be very tiring so we have decided to give it a miss.

I am reliably told that there are still lots of ideas in the pipeline and this debate is how to prioritise them.  I hope if anyone one of my ph family attends they will be kind enough to give us a brief synompsis of how it went and of any new ideas.  As ever so many are working hard for us to bring an end to this disease and I will always have hope until all the breath has left my body.  Never say never.

Link to Latest PH News

My little red rooster mask saved the day

OK so it makes people turn and stare, it makes Colin laugh but do I care, not a jot.  My red rooster mask as Colin calls it came in very handy last week when I went down to the new house.  As they were still plaster boarding the air was thick with the dust from where they were cutting it.  As soon as I stepped foot into the house I did an about turn and left to get my mask from the car.  What a blessing. It  meant I could go around the house, stay whilst discussing ideas and thoughts with the builders and still leave whilst I could breath.  I have never been so happy to look so daft before as this mask saved lots of further complications with any lungs.  So smile, or laugh or even ridicule, these masks are here to stay and another order will be made soon for a new supply.

Debate over children

In the UK I have seen a few articles over whether grandparents should be paid to take care of their grandchildren.  As ever there were for and against on this one.  I do "get" both sides of the argument but for me personally the reward is enough to see Izzy growing, being included in all aspects of her life and us helping to shape her future..  I am blessed to have watched her grow into the lovely delightful, funny confidant girl I see for two days each week and her sleepovers.  I think an occasional bunch of flowers is nice, just so you know that your efforts are appreciated and for me that is enough.

When I was down at the new house on Saturday she came out of hers holding a card she had made for me.  It was so sweet, a get well card.  I said how nice it was but said I am not poorly now though Izzy,  am better.  She smiled sweetly and told me to save it for when i was next ill!!!

I was sad to note that there is still bullying going on in playgrounds for children with red hair.  Quite why people bully over this I have no idea as red hair is stunning.  We have a grandson with the red hair and I also had a friend who had beautiful red hair.  We went on a cruise and often people remarked on how lovely the colour was.  How sad to see that children are bullied over such a detail.  Bullying can destroy a life, sometimes even leading to suicide as we see is happening more and more nowadays.  Beautiful lives gone in an instant, all that potential lost because of some sad person or people being awful to them.  It hurts me to read this and I wish we could stop it but I do not see how.  I pray Izzy never gets bullied and continues to have a happy school life ahead of her.

The house

Well what can I say!!  Colin works so incredibly hard on this.  This weekend he was digging trenches ready for the gas service to be fitted.  It was made particularly hard as the trench had been dug previously by him but as ever builders rubbish and been thrown into it, big lumps of concrete and bags of sand etc.  Where cement and sand had lain together as it rained of course it turned it into a solid immovable mass that had to be pick axed into pieces before being taken out.  I hope today things come to fruition and he can complete it to the satisfaction of the gas board and then that is another job put to bed.  Izzy came out to help him with a fishing net and her gardening gloves on, yes very helpful Izzy.

We haver chosen and ordered all the new electrical equipment for the house except for the extractor.  We do not seem to agree on the style of this one so we will keep looking.  The doors, oh those internal doors - we need twelve and it has been a nightmare choosing them,  do we go for a nice grey colour as this seems to be the trend, doors with strips of aluminium in them are also all the range now.  We have oak doors here and so want a change so they were out.  Think of the painting if we go for white doors, the list goes on.  At last we decided on a really lovely door, yes white but a little different and we are having them pre finished.  This means six or seven coats of paint are applied in the factory and the result is a door so smooth that can take knocks more than if we painted them twice.  We think it is worth the money as the thought of all the work getting these doors to a lovely sheen would be a nightmare.  Oh to be young again when things like this were not of any real consequence, we had the stamina to do anything.

A plasterer arrived to check out the house and to give the builder a quote.  It was gratifying to see him stay and look at the views from the various windows and tell us how lovely it was.  It makes me more determined than ever to get into this house and enjoy all that it has to offer.

Karma - for sure

The day has been so gorgeous I decided to go and see what was happening on the canal.  Lot of boats but not many people walking at all which surprised me.  All was still and peaceful for a while until I heard a lot of shouting behind me.  I turned in surprise as they were shouting so loud to see two men on bikes racing each other on the side of the canal!!  Sheer lunacy.  Well I was not going into the brink for sure over these two lunatics so i moved closer to the verge and away from the canal side.  With shock as they came by the side of me I heard a squeal and a clang and clatter and one of the bikes, along with its owner went head first into the canal.  How on earth his companion managed to not follow him is a surprise as he was right on the edge.  In an instant the one in the canal was cursing and attempting to get out of the water whilst his friend laid his bike down to help him.  What did surprise me was their ages.  They could not have been less than 30 year old each, maybe more.  Now maybe stupidity can be expected in the young who have not been taught better but the sheer madness of these two was beyond me.  I left them to it and continued.

Not too far on from this I looked into the canal to see a baby pigeon flapping its wings and wandering all over the water.  It clearly could not fly out so obviously something was wrong.  A couple were headed my way so I told them of my dilemma.  I clearly could not leave this bird to die, it was in distress.  They agreed and we three waited until it flapped its way to the side where the young man carefully reached down and lifted it from the water.  What an awful sight.  It had obviously been badly hurt, attacked by a crow maybe but anyway all its head was in a terrible state.  There was no way the bird was coming back from this but I have to confess I could not ring its neck, not even to stop its distress and neither could the other two.  Awful though it sounds we left it settled on the verge in the hope that its end came soon or somebody else saw the state and could do the deed.  Goodness I do not kill spiders, I lift them carefully and take them outside.  This has left a sour taste in my mouth I confess and I hate my cowardice but there it is, I am being honest.  Poor baby bird.  

Hope you are all taking advantage of the good weather we are having as I believe it is going to change by around Thursday.  I intend to make the most of getting out while I can though the heat really gets too much for me.  I just do what I can then hoe to rest.  Enjoy it doing what you can.

So all for now and I love you all and leave you and say many many thanks for bothering to read my rambles and for the comments and the likes.  

Warm love

Carole xxx

Saturday, 28 April 2018


Goodbye our ph brothers

We lost Glenn Shakotko and Pete Duffy recently. They both suffered from pulmonary hypertension. Once again it sent much sadness around our communities and much hurt was felt by the many that knew and loved these men.  So once again we all live with the horror of losing more and more of our ph family whilst waiting for a cure.  I KNOW they are working hard for us but a cure even if it came tomorrow is too late for our ph brothers and sisters lost to ph.

I never knew Glenn but I do know by the shock waves that went across our community that he was a very popular man in the world of ph.  I believe he had fought for 15 years this terrible condition.  He did not let it stop him though and he lived his life to the full, I know he was an amazing shoulder to cry on for many of his ph friends.  Apparently he was always happy to talk and to give advice to anyone that needed him.  So why must we keep enduring these losses, all good people, ones who make a difference.

Pete Duffy

Now Pete was one of our own here in the UK and he lived not too far away from me. We talked often,  sometimes by telephone but mostly on our forums in the long dark lonely hours of the night when all kinds of demons come out of the closet, scurry into our heads and make us have a need for somebody facing the same issues.  How many times would we open our computers in the early hours to see Pete "talking" to other ph friends.  Often he would tell us he was feeling hungry!  So would begin conversations with some of our other ph brothers and sisters who could not sleep.  Pete would often worry about his two precious girls, he was so very proud of them and feared leaving them without a dad.  Suffering with other issues Pete struggled for quite a while before his body said it was enough, it was time to leave this earth.  His loss will be felt by many on our forums here in the UK and further afield by those that were friends with him.  

So what kind of low life are you.

Some low life went into our new house and cut out all the electricity cables, likely for the very small amount of copper in them.  At best they would not have been paid more than £10, though the cost of new undamaged cables is of course expensive.  They would have had to take time to strip it and then take it to a place that buys copper.  Hardly seems worth the effort for them though of course it took our electrician hours to put all the cable in place. 

After they had completed their theft one of them then decided to poo in the jumper left by one of the builders.  No doubt their small mind thought of how funny this was!  Now all the work needs to be redone again taking time and money to get it back to where it was before.  { the builder said he had heard all the poo jokes ever written since this incident} !!

A lesson learnt but too late.  The builders had been told time and time again to secure the house.  Our windows were in but we did get the fact that they wanted to leave the doors until last as lots of going in and out with work tools  would be going on in the house and they wanted no damage.  They were supposed to block off all the entrances with wood, keeping only a small wooden door for the builders to get in an out.  Maybe they were too intent on doing the jobs inside the house but it has cost the building company dearly.   On the positive side the wooden doors have been fitted all around now which leaves a secure house as long as nobody leaves a window open.

We are led to believe it was kids, the height they cut the wires was not too high, no ladders were used, though there were plenty around.  A professional thief would not have left a scrap of wiring in the place.  I hope this is not a portent for things to come.  The area is a very good one with beautiful houses, I pray we are not seen as an easy target right now.  For us it has not cost anything. the onus is on the builder to insure the property whilst it is being built.  I hope we do not encounter another incident such as this again.

Getting better

Life has been pretty awful for the last two or three weeks.  After my trip and overnight stay at the hospital I hoped all would soon be over but no, I was slammed with an almighty chest infection.  I took my emergency antibiotics but they were having no effect really.  A visit to the doctor and he gave me some different ones that make me feel pretty bad, cause sickness etc BUT they are working well with my infection.  Only another three days to go on them thank goodness.  

It is rare I get scared with illnesses and my ph but I admit that this time I actually did.  Being immobile in bed, too much effort to do anything but to try to get breath into my lungs made my mind wander to a dark place.  I could not get out of bed without help, could not wash etc and the effort of holding anything was too much so not even all you guys on Facebook to connect with!   I ate the bare minimum which concerned Colin but the effort it took was not worth it to me.  

I thought about death, I admit it.  I did wonder if this was going to be my end. I know chest infections can mean the end for us so of course this came into my mind.  I wondered who would miss me, the family and friends who I no longer connect with, would they miss me when it was too late?  I worried about Izzy.  Would she remember me, had we done enough for things to stick in her little brain that there would always be a small part of it reserved for me.  Of course my children came into my head, thick with a headache so bad I felt I could scream.  Would they ever really know the depth of my love for them.  I wondered f they would still miss me years later as I miss my own parents.  I wondered if I would die without them by my side, without that final hug or touch of a comforting hand. 

Strangely enough I was not scared of death, in fact at times as my compromised lungs were screaming for the next intake of breath that barely touched them I would have welcomed it.  It just seemed too hard to keep going.  But bodies are remarkable things and the healing properties it contains gradually made little dents into my fluid filled lungs, daily I could feel myself improving, though only marginally at first until I woke today feeling a lot brighter.  Yesterday though I was hit with a sickness bug!!!  Well not a bug as it did not last long but boy did it slam me.  I barely made it to the loo where I was left on the floor a shaky mess.  I could not stand up afterwards despite trying so hard.  I think my body had needed time to recover from my infection and this last assault was just too much.  Fortunately I had my phone with me so I rang Colin and asked him to come home.  In minutes he arrived and helped me to my feet and to my bed....... again! 

We will now see what today brings.  I am up, though not yet dressed but obviously fit enough to be typing this.  My next task will be to order all the new electrical equipment for our new home.  I know that we will not need to take delivery until the time is right but this is a job I want putting to bed so to speak.  It is a job I can take care of as Colin has to deal with so many.  

Today the last of our holes for the air intake system we will be using will be completed.  In around one week all the scaffolding will be removed from around the house as all works will be internal only.  

I know the plans have been sent off to whoever it is that deals with our underfloor heating and I know the final level of the said floors.  Plumbers have put  in essential pipework etc and the house is so fully lagged you would not find an inch of space to add more, even the garage is fully insulated with this space age stuff they are using.  Our bifold doors came yesterday and were fitted and I am told they look really lovely.  Holes have been cut into the walls to enable us to have the fire we struggled to find a solutions for before in a sealed house, we found one!!  So daily an army of men go to work on bringing this house to completion.  One thing if any burglars try to get into the house again they will be in for a nasty shock now as the builders have fitted temporarily devices that would take pictures of them and alert the authorities.  Wish it had been done sooner but I feel a bit more reassured now.  

Once it is finished I intend to have all the new gadgets that show if anyone is lurking around your property wherever we are.  I have no reason to think it will be needed, the area is a good sound one, the thieves likely being opportunist kids, but the truth is nowadays nowhere is safe.  How sad that we live in a world where people steal and destroy others peoples property.  


I want to escape!!!  I think both of us could do with time out.  As May day is coming up we want to avoid that like the plaque, too many people around to be able to have a nice peaceful time.  I have been looking at places we have been to before and really enjoyed.  I always remember Malham and the peace of this place with so much of interest surrounding it.  Malham is a village set in the Yorkshire Dales.  Rolling hills greet you and limestone landscapes surround you here.  Yet there is so much to do if you want to explore.  For those who enjoyed Harry Potter the cliff just half a mile away from the centre was the backdrop for the Deathly Hallows.  Just over a mile away is Janet's Foss,  a truly wonderful waterfall reputed to be the home (behind the falls) of the Queen of Fairies.  So for the whimsical ones such a lovely place to visit.  The pool was originally used to dip sheep in many years ago but now many a travel weary walker has stopped to take a refreshing dip here. 

For walkers who enjoy a scramble my husband and I walked through Gordale Scar and enjoyed such a beautiful valley and limestone ravines, well worth the scramble at the end.  To top off the wonderful place there is a glacial lake called Malham Tarn. I have eaten a few picnics sitting by the side of this tarn in my time.   This tarn was the inspiration for the book The Water Babies. A Fairy Tale for a Land Baby.  This is the highest lake in England being 1,237 feet above sea level and only one of the eight upland alkaline lakes in Europe.  

So you can see why I simply must go back and hopefully this coming week.  I know I cannot explore it all as fully as I have in the past but I intend to see and do as much as I can.  The last time we stayed we resided in a lovely hotel called Beck Hall and I want to go there again.  The history of this place is so sweet.  It nestles by the side of the river and it used to be a wayfarers hostel back in the 1920s.  Years have rolled by and now this quaint cottage has grown to become a truly lovely place that has the most beautiful rooms and an amazing menu to enjoy after a day seeing the sights surrounding the area.  If anyone fancies going here that owns a dog then know that it is a dog friendly hotel.  Why I love this place is that it is set in such beautiful surroundings and if it is not a day to explore due to ph the gardens themselves are so lovely to try to meander around.  sit and listen to the river tumbling over rocks while you rest a while.  Go and try it, you will not be disappointed.  

So hopefully when Colin returns today I will be in a position to know if it is feasible, if we can go away in the next few days or if the house will once more demand his attention.  He is thinking not but  the house keeps throwing us a curve ball!  We shall see.  

Tour de Yorkshire

This bike race begins on the 3rd to the 6th May, with the final stage passing within 200m of our home.  Colin will go to take pictures of them departing from our famous Piece Hall, newly renovated and attracting lots of visitors it is a perfect place from which to start  I wish them all a great race and a safe outcome.  Watch it if you get a chance, we have lots of hills around here to test them and the most amazing countryside.  


She has won another award from school and so wants granddad to go and see her receive it.  Though I would love to go I think I need a day or two to come around from my illness so i will spend the day pottering and dealing with kitchen stuff as I said earlier.  Izzy is upset already at the thought of leaving her teacher behind when she moves up a class, she declared him to be funny too, something she believes her next teacher is not known for!!  So already the dread of a new class is looming for her.  I know she will be ok when the time comes, children are naturally  resilient and she will forge ahead when the time comes.

In the meantime she continues to be very happy in our company and enjoys staying over with us but the most heartwarming words were spoken by her a few days ago.  My daughter rang to say that neither her or Chris  would be home when Izzy arrived there from swimming so would Colin use his key to go in and, of course, sit with her until one of them returned from work.    Izzy rang me and said "grandma I am home and neither of my parents are here".  Of course she was fine with granddad but was just making a statement BUT what a statement.  She did not say mommy is not here, or Chris is not here but BUT that neither of her parents were there.  My heart soared as it means the three are now family.  Chris is no longer the outsider with her but has become her parent!  His hard work at showing her he loves her has paid off,  so this family unit is now strong.  She tells me she loves Chris and I can see it when I see them together.  I am happy!!

Enough from me now, I must away to attend electrical things!!  I hope you are all doing ok.  Enjoy the May Day for those in the UK,  I have not looked to how the weather will be but whatever your plans enjoy them.

Thank you for reading and for those that advised me on various things through this recent illness your help, as always, was invaluable.  

Warm love

Carole xxx