I CAN'T BLAME PH

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

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

HOW DID WE LIVE WITHOUT IT?

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.

Holiday!!

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