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