What a cold does to us

Just too many deaths

These last few days have been very painful.  First we heard of the death of a friend (not ph related) at the age of just 60.  Though I am not sure of all the details it appears to be something to do with his heart.  His wife is asking for donations for a defibrillator so maybe if there had been one close to hand he could have been saved.  Sadly due to lack of oxygen his family were told that there was nothing that could be done, though they got his heart beating again he was brain dead.  He died peacefully a few days later.  Today is the day of his funeral so I will go and pay my respects.  So sad for a family to lose a loved one so suddenly.  One day he went to work and he never returned home.  

The next death was our own Jane Jellyfish Davis who fought hard her battle with ph and other illnesses.  Sadly he kidneys could not take the strain any more and I believe this was the cause of her death.  She had been in and out of hospital so many times and kept fighting back with a great spirt.  She will be remembered as well for her jams and chutneys of which she made  many.  Rest easy now Jane, you will be missed by so many of us.

The third death was yesterday (Wednesday) and it was the expected, though sad death of my godmother.  She died in Whitby surrounded by her family who told me her death was a peaceful one.  I am so thankful that I had managed to see her just two weeks ago, I knew the end could not be far off even then.  Her biggest fear was that she would end up in a nursing home and I am so thankful that she did not, just one night in her local hospital.  There will be a small funeral for her in Whitby and then a small memorial for her back here where her ashes will be laid to rest along side her beloved Ken, my godfather.  

The is the end of an era for us as a family and we will never return to Whitby without carrying them in our hearts.

Leeds girls day out

No not a rowdy set of girls “doing the bars” but a day out for just Izzy and I.  Grandma and granddaughter time together.  Though I was very nervous about how I would cope it actually turned out really well.  We went in on the train and Izzy loved it.  She told me it had been a while since we had been on a train so it was still a “fun” thing to do for her.  Our goal was to go to the Trinity Center and buy her she new lego ready for her holiday with grandad in York.  There is always something going on in this center and this day was no different.  This time there was a slide, not any slide but one that was enclosed and twisty.  At the top was a wind tunnel where there were lots of leaflets blowing around.  the object was for Izzy to catch one ad then she was to be allowed down the slide.  At the bottom was a lovely setting, it was as if she was on a beach with deckchairs and swimming things all around. They were promoting a new French Restaurant.  

As it was too early for lunch we did what we had set out to do, chose new lego, went to TK Max where she eyed up two dolls so much that of course I fell soft and bought them for her.  We both tried on boots and trainers, though left without any.  I must confess to laying down on the enormous seats they have for the customers to try their shoes on.  Nobody was about and my body was telling me I just needed to do this.  After a short rest we decided it was time for a real rest in the shape of going  to lunch.

This French place that had been promoted at the Trinity Center was really lovely.  I was presented with a glass of bubbly and we were seated where  we could watch the world go by .  Izzy was given a drink and we were also presented with some gorgeous garlic bread which we both ravenously tucked into.  This was all for free as it was part of the promotion for their new place.  I then decided to order from the menu and we both enjoyed our main courses, though as Izzy has four loose teeth it was not easy for her to eat chicken without the fear of losing one of her teeth.  Fortunately she did not.  After a gorgeous dessert and such a long rest we both decided we needed to head for home.  A smooth journey back and a taxi to our house and I flopped onto the bed.  I was absolutely shattered but she was happy to lay by the side of me and play with her new dolls.  We both agreed grandma and grandaughter days should be on the cards more often.

Right now she is away in York with her granddad. My friend Lucy is here with me so I certainly do not have time to get bored.  I did go to York with them and spent a few hours before catching a train back home.  We went to the Jorvik Center and I was surprised at the questions she asked the archeologist about the dig and the things they had found.  The shrinking violet has gone to be replaced by a very confident little girl who is quite happy to step forward and discuss things of interest.  She loves skeletons in particular and took a great deal of interest in examining the bones to look for signs of arthritis etc  One of the bodies had an extra tooth so she was amazed by this!

Onward to Barley Hall a reconstructed medieval townhouse.  This was originally built around 1360 by the monks of Nostell Priory.  Once again she was blown over by the history of the place and we must have spent over two hours in the few rooms there are.  In the end she was so reluctant to leave but I had to go for my train so I left her there with grandad.  As she was so interested in history and digs etc it was decided she would go on an archeological dig in York too.  Of course this was designed so that he children did “find” things” but I think this is a wonderful idea as it piques their interest even more.  It would not surprise me at all if this child later in life goes on to do something in the world of archaeology as she has shown over the years a great love of finding out and wanting to learn more about our past.  or maybe she could become an historian, time will tell.  

York Maze

A day was spent in the York Maze.  Izzy loves this place and for those of you with children, or indeed without this place is amazing {excuse the pun}   From the house of confusion to the pig races and the maze itself, soon to be removed to begin new growth for next years maze there is so much to do.  This is such a fun day out for the whole family.  The maze easily copes with wheelchairs and mobility scooters too so nobody needs to feel they will be excluded.  The Maze is only open from July to September when the crop is harvested so please check with their website if planning a trip. 

It is  just a cold!!!!!........ or not.

It was nothing more than that, I had a simple cold but in the world of ph it means so very much more.  It means legs that shake so bad they feel there is not enough strength to hold you up,  it means the wheeze in our chest that makes us wonder if it is going to “settle” and give us an infection.  It means keeping a careful eye on it ready to take the antibiotics if it does take a turn for the worst, though hoping they are not needed.  So a simple cold to many is nothing more than that.  to us it could end up with a stay in the hospital.  I have been admitted numerous times with a cold that turned bad.  I felt this was “just a cold” and I believed I was on the mend.  The tissue mountain became less daily, the vic was not being used as much and I could now risk clean sheets that would not be covered in the smelly stuff. 

Well I was so wrong on that score for sure.  The cold that I felt was disappearing came back with a vengeance and slammed me with such a wheeze, not able to breath properly and a feeling of such constraint in my chest.  I rang the doctor who asked me to go in for them to listen to my chest.  thank goodness I did.  I saw Dr Davis who is the doctor who knows my ph specialist personally.  He listened to my chest and stepped back in horror.  He said my lungs were really bad so antibiotics it is once again.  He also took a blood test to check for pneumonia, though I am sure I do not have that.  The speed of which a simple cold turns bad is alarming.  I shall be resting for the next couple of days.   

Time out

Thank you for all the lovely comments on my post when I said I would be returning to Facebook after taking time out for a couple of weeks to share in taking care of  Izzy who was spending her days with us.  It felt so good to spend time doing crafts and things with her without checking  the computer to see if there were new ones who wanted to join the Pulmonary Arterial Hypertension Support Site.  It was time well spent as I have returned feeling much better and more refreshed.  Whilst social media has a very definite place in our world today I do believe that time spent away from it can also be very beneficial.  I know quite a few people who have posted in the past that they are just taking time away from the computer.  I can't believe it does any harm at all.  It certainly worked for me and I feel so much more focused. 

The wanderers return

Colin and Izzy arrived home yesterday.  We are still clearing away all the things they both brought back from their trip to York.  This apartment is too small for all of this, roll on the new house.  Izzy was full of all she had seen and done in York and is looking forward to her next trip.  Her grandad is looking forward to a rest!  I am sorting out things to take to our local charity shop so a trip there will be needed today.  Other than that nothing is on the cards for me but to rest.  

So this is a boring blog really but at least you know I am still around

Much love to you all and thank you so much for taking the time to read.

Carole xxxx 

A tale of joy and woe.

My blog is quite late I know and I have been a bit quiet on Facebook recently.  The reason has been the pain in my back and ankle.  It really got to me the pain  necessitating in ending our holiday two weeks early as I said in my last blog.  I was given pills for the pain and anti sickness pills too but they have made me feel pretty poorly.  Isn't it awful that the tablets to help us to cope with pain make us feel so bad!  My mouth also tasted bad due to these pain meds  all the time so even with mouthwash I had a pretty awful taste going on.  All appetite left me though that is no bad thing, good for the waistline. 

My ph seems to be in a good place at the moment.  I know this can change to the bad at anytime but being an optimist rather than a pessimist I just look forward to the good days and push the bad ones behind me.  I truly believe the denervation I had has helped me with this.  Time rolls  by  day by day and before I realise it I have had more good days than bad and if the pain in my back would leave me I would  be content.  

I have seen a sports therapist to help with the problem with my ankle and though the work she did on it was pretty painful  it does feel easier and not as “locked” as it was so I am still hoping to manage it without having a cast put on. 

Royal Yacht Britannia 

I forgot to mention that when we were touring Scotland and were in Edinburgh we decided to take a tour around the Royal Yacht  Britannia.  What an eye opener it was for me as my expectations were of a ship so much grander inside  than the one I saw.  I am not decrying the Yacht, it it beautiful but I expected the Royal bedrooms to be very elegant and ornate.  Not so at all.  

The Queens own bedroom had a single bed in it and bedside tables and a dressing table.  A door led to a wardrobe for clothes.  All very tiny, very compact.  The en suite was no larger than ours where I expected so much more.  

Another door in the room led through to the Dukes own bedroom, a mirror image of hers just slightly more masculine.  Whilst the Queen  had her sheets stitched with her own personal logo the Duke did not.  The bedroom where the later royals honeymooned, two of them being Charles and Diana had a double bed, not king and again was quite sparse.  Believe me I have cruised many times and would have considered myself to have been short changed had I been given a cabin such as these. It transpires that Diana spent much of her spare time on a deck a few floors below with the staff singing and enjoying listening to their tales, so much so that here were still plenty of memorabilia about her in the crews lounge bar.   

The Queen had a lovely lounge where all the family would meet for drinks before dinner, sherry was the favourite choice.  This lounge contained a piano that was used often.  Many jigsaws were in this room and board games that the family enjoyed.  When this Yacht was being built the Queen requested a real fire that burnt logs!  It was quickly pointed out to her that this was a definite no no and so a dreadful electric fire was installed instead.  For those disabled  there  was a lift between decks.  

The dining room though was a feast for the eyes.  Very ornately set table that could hold sixty I believe with gifts from other heads of state decorating the walls and  cabinets. The room the Queen breakfasted in was really  small, smaller than an average conservatory, though it sort of narrowed and then went around to another of similar size, all being part of the same which made the whole space bigger.   It led out onto a deck where the family could take the sun. Though not what I expected it was fascinating to go around and made for a very enjoyable morning. 

Back again!

This blog is going to be jumping around I fear as I keep remembering things I want to tell you.  One of those things is that the gypsy camp returned, though only for three days.  This time they decided to enclose the grammar school that is situated at the top of the moor.  It was fortunate that the school was closed for the holidays as the playground was used by them as a place to “lob” (throw) in their children's dirty nappies over the wall.  Fortunately the caretaker dealt with  this once they were forced to move on.  Though I did not encounter them this time my niece Sally and her friend had a sad time  with them.  Whilst walking the dog, on a leash, across the Moor they were shocked to see some of the gypsy cars being used to “spin” round and round the grass for fun, thereby churning up all the grass.  A bonfire had been lit in the middle of their camp which in turn would cause damage to the grass.  As this  site is a play area for the many games such as football, rugger etc this was so sad as once they left much work would need to have been done to restore it fit for use.  As Sally and her friend proceeded down the middle of this Moor they were confronted by a boy, likely around 15 she thinks who called her and her  friend whores!  Sally told her friend, a woman of around 45 who suffers from epilepsy not to take any notice, not to react but to keep on walking.  Sally was so worried all  the confrontation would cause her friend to fit, fortunately it did not,  This appears to have enraged the youth who decided to take his anger at being ignored out on my nieces dog.  He kicked it!  How Sally kept her temper I do not know but I think she knew it would be futile to argue and so they both continued to walk on.   At this the youth decided to do one more last desperate act to try to intimidate. he dropped his trousers in front of them.  To the credit of Sally and her friend they just kept on walking!  The youth decided he was beaten I think as nothing more from him was forthcoming. Though they only stayed three days, being moved on swiftly by the police it cost money to once again sort out the Moor.  A garage just around the corner from them was broken into and a large garden had its vegetable and fruit produce stolen.  Once again we can't know it was them but it follows a pattern.  So in only a matter of weeks they have been here twice,  beginning to really get concerned.  

Tuesday

As my godmother is so poorly and close to death we decided to arrange another visit, the last one was four weeks ago to see her.  This coincided with my brother and his family taking  their holiday where my godmother  lives, Whitby. As we have Izzy for most of the school holidays we decided to stay over in a lovely hotel and let Izzy enjoy playing in the sand and our families meeting up with each other.  

And then came the sunshine 

Though the time didn't begin in the best way it ended really well.  As there had been an issue on Facebook with a fellow ph members  account being suspended  and my advising people to block this man it created a huge hullabaloo and something well meaning  turned into a nightmare.  This of course had the effect of the stress pushing up my ph, not just for me but by the gentleman on the other side of all of this. It was so hard leaving the house to go away as Colin had to deal with everything, I felt so very poorly.  He asked if we should cancel and for a second the idea of staying in bed and blocking out the world appealed so much but  Izzy was so excited and there was also my godmother to consider.  I sat in the car with a sick bowl in one hand and a tissue in the other.  It was a hard journey to make knowing all this mess needed to be sorted .  Anyway by the time we arrived, though I felt very depressed with all of this I tried to get in the mood for Izzy.  

As always spending time with Izzy cleared my mood and I realised that more than likely I needed “time out”.  By Thursday the issue was resolved well from my side and I am hoping it either is or is getting  resolved for Buster. 

Our room was lovely and Izzy loved the huge bathroom we had.  We had a king size bed and the bed for Izzy looked so inviting I wanted to lay down on the big, marshmallowy mound of duvet and snowy white pillows and rest all day,  forget it all,  Facebook and everything.  

Izzy decided the beach was where she wanted to go as she wanted to “build the biggest sandcastle ever” so off we went.  With me ensconced in a deckchair grandad and granddaughter began to build. It was decided their spades were not big enough so off I was sent to find the largest ones I could find.  Job done and they proceeded to try to dig down to Australia. 

Little children around came to look so we gave them the small spades and they “helped” too! 😎🤠😄.  Then came their swim in the North Sea.  Do not compare this sea to the warmth of the Atlantic.  Ours is cold, grey and miserable.  Nonetheless Izzy insisted so off they both went.  I expected them back in minutes with Izzy declaring it was too cold.  Not so, she loved it and was in around 20 minutes.  I was shocked but pleased.  

We met up with my family for a short time and I arranged with my brother to visit our godmother the following day. After spending a lovely time together it was time for bed, Izzy being upset as she had seen a skeleton  riding a bike and a man popping up from a well to say  boo!   She really is soft this girl but she is my joy, the sunshine in my life that always warms my heart.  

On our return home I decided to take  some well needed time out from Facebook and so to that  end I will be enjoying more precious time with Izzy.  This is very important as she has reliably informed me that neither of us will be at her wedding, she is not quite 7.  When I asked why not she tells me we are both too old!  She said by the time she gets married we will be old and  stooped and have grey hair, though if we really want to attend we may do if we use a walking stick and I wear a flowery dress!  

In the meantime the pah site is left in the very capable hands of Paul, Nicole and Lyz who will, continue to keep up the support and help new members to find their way.

Thursday 

We spent a very busy day, leaving me exhausted but happy. Izzy has some gorgeous new patent  leather Clarks’ winter boots ready for her return to school.  We also bought her a purple bike with little hints of green and gold for her birthday.  Seems silly to wait another five weeks when she can have the chance of using  it in our park opposite, through the school holidays.  No stabilisers so could prove interesting!  

So I will get this  posted in the morning,  It is 4:29 am here, a time when I am often awake trying to give encouragement to newbies in the group. As I have left that for now what better way than to get the blog completed. 

In the meantime I leave the group in the very capable hands of Paul, Lyz and Nicole who will continue to accept  new members into the group and be there for any of you who needs a shoulder to cry on or any advice  they can give.  

Stay well and keep up the hope for a cure,  I pray my next trial, hopefully at the beginning of 2018 will be the one we have all been waiting for.  One day it will come.  

As ever thank you for reading, liking, sharing and commenting. 

Warm love to all

Carole xxxx

And rasberries for breakfast

Our holiday got off to a flying start as we first headed up the coast to Whitby to visit with my godmother.  As I feared she was terribly frail as the cancer is really taking its toll.  I was scared to hug her tightly in case she might break.  We talked about the good old times we had shared with my parents and Ken, my deceased godfather.  We had so many lovely memories to share which was very comforting for us all.  We talked of getting up at the crack of dawn and meeting them down at the fishing port to see what the catch was. Dad and I would hand pick the ones we wanted to eat for breakfast or for the evening meal.  

Colin and I went down into the town once we left her and the smell of the sea, the salty tang in the air combined with the smell of fish made me long to be small again, with no worries ahead and the warm comfort of my dads hand as we walked back to the car with our bounty from the sea.  So many memories were evoked in our little time spent here but we had to move on, our holiday needed to begin in earnest.

We called into a site at Edinburgh, such a beautiful city.  We shopped until we dropped and we went for a drink on an avenue where we met three lovely girls from Glasgow up to see Wet Wet Wet.  We shared their table and they were well into their third bottle of Prosecco when we sat down.  What a pleasure it was to talk to these three nurses.  They made us smile so much and told us where we should be visiting. We took it all on board and fully intended to go on our way home but sadly things intervened and this was not to be.  Were it not for my absolute tiredness that engulfed me I would have loved to have spent more time with them  I hope the concert was as good as they were hoping it would be.

Onwards then to Killin Falls and such a wonderful trundle through this tiny village.  We went to actually sit on the rocks at the side of the falls and so lovely it was to feel the spray on our faces as we saw the magnificence of this water tumbling gently down the rocks at our feet.  How I loved this place and long to return.

Going back to our motor home we went a different way and saw there were so many raspberry bushes  full with their bounty.  Of course my ever present little bag came out of my pocket and I picked enough to go on our breakfast dish in the morning  They were big and luscious.   A deer passed in front of us as we trundled back, not very old at all it stood amongst the bushes and watched us with its beautiful big almost black eyes.  There was no fear at all to be near the human population and I marvelled at the beauty of this magnificent animal.  When we all tired of examining each other it slowly walked away, its head held high.  What a pleasure it was for me to see this.

Into the motor home again and this time to visit one of our favourite places, Fort William.  Our site was at the base of Ben Nevis, a mountain that Colin has visited so many times, walking up and enjoying so many  views from the top.   Not for him though the tourist path, he always choose the difficult routes.  One time he climbed it in winter using his ice axe and his crampons.  He does not like easy stages in anything!

We went for dinner at the base of this mountain and what a friendly bunch they were behind the bar.  I rarely drink, preferring generally water but hey, I was on holiday!  Not sure of what to have the guy behind the bar proceeded to give me tasters of many of the drinks in the pumps.  I laughed and said at this rate iI did not need to purchase a drink, I was very merry already.  A lovely meal followed before we went slightly inebriated, only slightly, to our bed.  

Our next stop was to visit friends in Ardtoe, a tiny place where in fact the cottages numbered just three!  There were some of the old crofts around though no longer in use since the Scottish government gave them huge subsidies to build new crofts.  It all added to the charm of the place.  Colin went out in the boat with Philip, a family member who holidays here each year to pull up the lobster pots that were set every day.  The family have a small boat and put out their pots daily.   the catch was magnificent.  Two beautiful lobsters and too many prawns to know what to do with.  Philip and Trevor would boil these and prepare them for the freezer.  We took sufficient prawns for our evening meal and they were truly delicious.  

We stayed here for two nights and Colin fished and caught us a mackerel which we had as a starter for our evening meal.  This place is truly idyllic, magical and holds many memories for Colin.  Alas it was here that my back "went" and I screamed in agony.  I had not been doing anything silly, did not bed down or twist, something happened in my body and this for me was disaster.  

As I suffer from ph I know many medicines react with our ph meds so we are told to stay clear of them.  Ibuprofen is one of them but for sure paracetamol alone would not even begin to touch this pain.  Miles from the nearest doctor I had no option but to take them.  I know for a fact they make our INR rise sharply but what could I do.  I lowered my daily dose of warfarin and hoped for the best.  There was no signal for a mobile phone here, no wifi, nothing so it was self help only.  I knew if it did not begin to right itself it would be homeward bound for me but decided to try to get on with it and so off we headed on our journey once more.

I was sad to leave this place.  I would wake from sleep to the sound of the waves nudging the rocks and this would lull me back to sleep, the gentle stirring of the water and the bleating of the sheep as they nestled under the tyres of our motor home.  Don't worry no sheep were harmed by us at all. 

On we drove, most of the time with me gritting my teeth against the pain in my back.  We stopped at Eilean Donan Castle.  This scenery was magnificent and the pine backdrop was mirrored perfectly in the water of the Loch, oh to be a painter and put brush to canvas to capture all this beauty.  Sadly here though we saw a dead calf at the side of the road.  We also saw signs that warned us to take care as there were Feral goats for the next two miles.  These signs did not help this poor calf.  

Sadly my back was truly bad and I wanted to scream in agony.  I was like an addict counting the hours until I could take my next "fix" and this particular one being one I should not be having, the ibuprofen.  

Our penultimate stop was at the Glenuig Inn on the side of beautiful Lochailort.  Nestled on the shores of this loch we went to the Inn for dinner.  I could not eat much but settled on Cullen Skink, a true Scottish recipe for fish soup.  I have had it many tines but never one to beat this.  As there was a smoke house only yards from the restaurant we assume their fish is so fresh.  The bread that accompanied it was fresh and home baked.  With two huge slabs of this and a whole load of butter, yes bad for the arteries I know, it made a magnificent supper for me.

We decided our last stop before home would be a place called Moffat and how lovely this small town turned out to be.  Here we actually did a pub crawl, well to be honest we visited three pubs before going for a Chinese take away and taking it back to our van.  Definitely made the list of our must visit places again.  At the entrance to this site there was a home made pizza oven and the man that owned it was just stoking up the fire and advertising fresh home made pizzas.  We thought about it and decided it would be one for next time.

I had wanted to stop at Gretna Green on the way home but by then I knew I needed to get myself in a more comfy position and relieve the jarring of the ride so we headed straight back to home.  Oh the delight of seeing an envelope I had been hoping to receive with some good news in it, more about that at a later date.  I rang my hairdresser to and made an appointment for a complete hair do, I really must get this "Back" of mine sorted out soon.

Whilst away sadly Lyz Clematis, one of our admins fell poorly and was admitted to hospital  They are referring her back to the transplant clinic as it is feared her disease is progressing faster than was hoped.  I am sure we all pray for her to get fit enough to return to her family soon.

Another source of great joy was to receive a post from Marc Facer with this superb news.  HE NO LONGER HAS PH!  It seems that he has a complex issues, well a few but what they believed was ph initially turned out to be a lack of vitamin D, he was totally without this vitamin in his body.  Now I don't even begin to understand what this means so I asked Marc to please explain it more fully in a Facebook post before he left us.  He kindly did.  Now this is extremely rare so please don't all begin to wonder if your ph is a lack of this vitamin, would that it could be, for sure.

Home sweet home and our plan to call and see Izzy before she left for holiday the following day worked out so great.  Colin rang her and was talking to her on the phone, not letting on we are outside the her door.  We then rang the doorbell and as the door opened Izzy, who was on the stairs stared for a split second with wonder and said "is this true"  with a huge squeal she ran to be enveloped in grandads arms and was so overwhelmed that she had grandad back again.  She kept saying "are you back, are you back" and we told her we had come to see them all before they left for their holiday  I was presented with two home made pots she had done at her holiday club and was pleased to put them in our airing cupboard to dry out further before they go on display.  

So here I am home again with some wonderful friends asking how they can help.  I cant wait to see them.  I can get on Facebook all the time now and at last I saw all the lovely messages you all sent me when I last posted about my back.  How truly lovely it is to see so much support and I thank each and every one of you.

All for now, cant do anything more about this silly back of mine until Monday but in the meantime there are exciting things to deal with.

So I love you and leave you with the words once again of thanks, thanks for being there for me, thanks for caring, for reading and for liking and commenting on my posts.  

Warm love

Carole

oh and for those on the transplantlist still waiting, remember  I said generally somebody gets the call whilst we are away don't forget this one......  I still officially have a further 16 days of my holidays so don't hide your hospital bag away just yet!

For those on the transplant list - Be Prepared.

A heads up for those awaiting transplants.  Be prepared!  I say this as generally when we go on holiday somebody gets the call.  I think there has only been one year this did not happen since I was diagnosed.  Have you bags packed and by the door because I will actually be shocked if I do not see somebody has got his or her wish.  

This will certainly be the last time I write a blog for four whole weeks.  George Gaskin don't you dare write a message saying thank goodness!  The internet on our Scottish holiday is generally sporadic to say the least so blogs are very much out of the question.  We head off to Scotland on Thursday, stopping en route to visit my seriously poorly godmother who is sadly dying with cancer.  We shall then just go where the mood takes us until we meet up with friends in Arto, on the west coast for a couple of days.We have steam train journeys planned and wanders around little villages as we travel from one side of the coast to the other.  

Whilst we give ourselves four weeks it is not set in concrete.  There will be warfarin clinics to fit in whilst travelling and of course see how I go with my health.  I seem to be doing ok except for my blessed neck.  Once again it has "gone" and is incredibly painful due to my needing an op on my fifth and sixth vertebrae.  but of course this cannot be done due to my ph so pain injections are the order of the day.  I am hoping somebody cancels today or tomorrow and I can take their place.  I have spoken to the secretary and all is in her hands.

We have not done much this week so this could possibly be the most boring blog ever.  I have been catching up with the journal I do for Izzy as this has not been updated for a few weeks.  I do write a few notes so I don't forget so it is easy to tell her  all we have done together.  

I did have a call from a potential denervation patient who wanted to talk to somebody who had had the procedure as they were considering whether or not to go ahead with it.  All I could do is say how it was for me, and how I feel I have improved since this was done.  After a lengthy talk they decided they would, if all tests showed their eligibility,  go ahead with it.  I hope their improvement goes down the same path as mine.

Saturday was a lovely day and we did do something nice instead of preparing for four weeks away.  We decided to head off to Hebden Bridge, just around seven miles away and park the car.  After a trundle around the town which is always lovely and even more so as they were having lots of activities around we moved down the bridge by the river  to see what other delights were going on.    In the square they had the "mummers" performing and this always attracts a lot of attention.  Just down the square a little was a man playing a guitar, and very good he was too.  As we had decided to follow the Calderdale Way to Gibson Mill at Hardcastle Crags there was no hanging around for us.

Off we went past the "thingameejig theatre"  Yes this really is the name.  It always brings a smile to my face and I think of my mom and dad.  This was one word used often in our house.  Mom would see dad rummaging around in drawers or cupboards and ask him what he was looking for.  His answer was "oh you know the thingameejig"  when mom looked at him puzzled he would say "you know the doo da"  again a look of puzzlement on her face and he would come back with " the whatchamacallit". This dialogue would continue for quite some time.  Of course as he could not remember the name of what he wanted all these words came out instead.  Then when he would say what it was he was trying to do that required the "thingameejig" mom would find the implement he required and peace would descend once more whilst mom put back things in their correct paces after his rummage.  

Onwards to the Calderdale Way which takes us along the path of the river with its tumbling water sending gentle sprays out to those getting too near.  Dogs were playing alongside children cooling themselves down in the heat of the sun.  As we continued past there were lovely hedgerows and we could hear lots of activity beyond it.  We took a peek and was surprised to see that there was some kind of gala being held here.  ahead of us we could hear and see Punch and Judy just getting into the part of the story where the dog took the sausages.  Children were howling  with laughter and I remembered taking mine to see this show when they were young.  I believe the part where the policeman uses his truncheon for physical assault has been stopped due to EU regulations.  Madness! 

So on we continued and when we saw the bowling green and we also could hear the sound of the croquet mallets hitting the balls on the croquet lawn we once again took a peek.  This time we encountered a lady wearing a pinny, apron to those that do not understand the Yorkshire idiom, and we were invited to partake of a cup  of tea and a piece of cake.  Way too early for us so we declined and continued.  The Calderdale Way is beautiful and sheltered us from the heat of the sun.  The tree lined route stretched away before us with the sun sending its rays through the branches dappling all in front of us. The smells coming from the hedgerows was so lovely and earthy.  On we went until we came to a gate where we saw this plaque on it .................... I have not bothered to google the dog who was lost here or how he was lost but I may do sometime.  Over yet another  bridge and onwards past The Blue Pig public house at Midgehole, what a lovely word I think,  sitting in a quiet spot with just three cottages nestled alongside of it.  

We continued up through Hebden Hay until we reached the cafe at Gibson Mill.  There we shared a table with a gentleman and his companion.  It turned out he lived quite close to us, just the opposite side of the park we live by.  He was talking with such affection about all he had been showing his companion who was over fro Canada for a visit.  His last words before we went our separate ways was that we were fortunate to live in a hidden gem.  He is right, we really are.  

Sadly time to return home again and we wended our way back exactly the same way we had come.  Back in the Square I noticed they have opened up a tiny shop selling earthenware pots.  I could not resist taking a look as my cleaner had by accident knocked and broken the lid of my onion pot.  Maybe I could find a new one.  Nothing was here though to match the one we had bought in Spain which is actually in the shape of an onion and it has a face on it weeping!  The lid was the top of the onion head.  Colin has repaired it and it will do for now but I would love a new one.  

On the way home we called at Chris and Danielle's place as they were away for the day and we knew the cat was home alone.  Now I am not a cat lover though my other half is.  Even I though was shocked by the affection I have for this little bundle of fluff.  She moves so quickly though I am always scared she will get squashed under feet.  she is a house cat and is very affectionate and loves to play.  After a while we left her to her own devices whilst she waited for her family to arrive back for more cuddles. Home for us and a well earned rest.  

Anyway all my things are now ready for the holiday except for completing my boxes of meds.  I cannot do that until I get my INR results tomorrow.   I now have time out so I can go and enjoy watching Izzy swimming tonight at the baths.  She loves the deep water but of course in her lessons the water is not so deep.  Grandad takes her playing for half an hour before the lesson and she is straight into the deep playing and diving down to collect things he throws to the bottom.  Her mom will be surprised when they go on holiday this time as she has improved so much.

So away I go, no blogs for a while but I will try to keep up with all that is happening in dribs and drabs.  Go well everyone.  Again thanks for reading and the likes and shares.  

Warm love to you all

Carole xxx

  

Am I living or dying?

What a question

I asked myself this question after receiving a few private messages from some of our newly diagnosed pulmonary hypertension friends.  For me the answer is very simple, I am living!!!  We all have choices to make in life and mine is to live even whilst I have this terrible disease.  

I think my first year of diagnosis was the hardest.  I could never get over the fact that yes, I had been told I was dying and the reason was that I had this dreadful condition that would, I was informed, slowly suffocate me from the inside.  How terrifying that was.  Can those of you without this disease imagine the horror we all feel when dealt such a tremendous blow.  So I admit my first year, living with the hickman life (this line was what eventually gave me a life back) was a life where I was not living but dying.  How terrible it was too.

Now seven years down the line at the end of this month since diagnosis I see things so much clearer. Even since I was diagnosed more medicines have been added to the arsenal of the ones we have, being the weapons we need to control our illness.  Even as I type this research is madly going on all over the world to find a cure for this disease.  More specialists are choosing to come into the world of this oh so fascinating disease of pulmonary hypertension.  The medicines I take have helped me to live a life whilst fighting the battle I face every second of every day.  Fight it I will and I aim to try to do all I can to live as normal a life as I can whilst living, yes living with this illness. 

I wake each day, after a terrible nights sleep I admit to a fresh day dawning. With all of its hopes and possibilities before me.  I do my best to concentrate on the things I can possibly achieve rather than the negative.  If my ph is having a day where it raises its head too high above the covers then I do what I must, I rest, I take a duvet day and listen to my body when it screams for me to give it a chance to "come round" a little , I help my body to deal with al the stress of ph.  I always assume that a better day will come, I just need to wait a little time for it to come around again.   

So in answer to the question am I living with ph or am I dying with ph there is no question in my mine.  I am living with ph.  I refuse to be defined by this illness.  Just remember all the medical knowledge that continues to open up about our illness.

Nicole Burish sent a link (Below) to a list of the 25 secrets of people with chronic illnesses and for the most part it defines those of us with ph.  I found it a fascinating link as I opened each page and thought "oh yes that is me"   I also feel that the new ones whose families have not quite "got" what this illness is like as we generally look fine should show it to your families and friend as it explains  such a lot about how we feel from day to day, minute to minute.

https://l.facebook.com/l.php?u=https%3A%2F%2Fthemighty.com%2F2016%2F02%2Fwhat-its-like-to-have-a-chronic-illness%2F&h=ATMSjVJGNT49QeJ3ruO84cGfVar_bfqBkLRMfpD1b1RITDrFXP8f70Z7Hd94_tazOOYaAc9IAX3wLuTTVeI8BiiWizt7Dk9qdUdhchhePDYmtNT02QSLJ5597UBEq60sNblmYV243XvZj8dM&s=1

So a new day has dawned.  I aim to get this blog off in the next couple of hours and then see how I feel.  This something we cannot know until we have gone through the task of getting washed and dressed as it could change in the time it takes to do these things.  I try to be optimistic though rather than pessimistic and think I shall take a trundle dow the Hebble Trail to see how the fruit in the hedgerows are coming along.  

My hope on this gorgeous sunny morning is I shall "live" this life and enjoy the sights and sounds and smells of the countryside on my doorstep.  As I weave my merry way down the trail I know I will hear the rustle in the bushes of the tiny animals that seek to hide themselves from me.  I will hear and see the stream as the water flows gently down to join the  River Calder and I will hear its gentle splashes as it encounters rocks and stones, I will see the sun move around the sky and if I look up at the correct time I shall see the trails in the sky made by the vapours of the aeroplanes taking or bringing back the holiday makers.  My mind will take me into the plane and I will "see" some of the occupants and their anticipation of what lies ahead when this journey is over.  I shall take my little sack of sandwich bags and remove one ready, hopefully to take a few of the fruits I shall find in the hedgerows and add them to a crumble or a pie. I am never greedy, I take only small amount as I wish for others to enjoy this fruit too.  

Once again I answer my own question, Am I living or dying?  You tell me what you think and ask yourself the same question.  I hope your answer is the same as mine.  Don't give in to negative thoughts.  Stay strong, stay positive.  

House plans

Well it was nerve wracking  I will admit to you all.  So much depended on answers we were to get from our builder and believe me, though we had gone so far down the line with the purchase of the land, the removal of the trees and most hedges we truly would have backed out and the eleventh hour.  

The meeting went well and as Colin put a tick against more and more of the questions he had prepared i could feel my sense of anticipation growing, All appeared to be going well until one of  the very last questions and this needs yet to be answered before we go ahead.  This question was how far down will they have to go to make the foundations safe.  My daughters house is built next door but the question asked by our architect and the builder is "why did the original builder not build on this part of the land"?  Did they know something we have not yet seen, is there something we do not know underneath this land.  It was farmland many years ago, hence all the beautiful dry store walls surrounding it.  It is in an idyllic spot with amazing views of Norland Moor spread out in front of us, hills I used to walk up often. We know from previous surveys that there is nothing poisonous on this land The question needs to be answered and this requires a man and equipment that digs holes deep into the ground to determine the levels of where the clay is to build a firm foundation.  We anticipate this will be carried out this week and if so then the answer is an absolutely wonderful YES, please begin the build. 

I asked the question of when he could begin and the answer was September or October,  When asked for a completion estimate he says it should be a six month build.  I add on to that another three months.  I know from experience they never go to schedule.  The beauty of this builder is that he has also factored in a lovely glass wall around our outside terrace which will give us the feeling of cosiness even when the wind is blowing.  As we are having bi fold doors it means I can enjoy an unbroken view of the hills in front of me even when it is blowing a gale outside.  

We left his office with a firm handshake and the promise to him that if the holes that are bored turn out to show all is sound then he can go ahead!  So exciting and something else to strive for, to look ahead at good times after the stress of the build.    

Izzy canoeing

Colin used to be a canoe instructor and his son followed in his dads footsteps.  Sea Scouts is a place that holds many memories from his side of the family so we wondered, as Izzy is now quite a capable swimmer if she would care to join this club.  Colin took her down to see the children canoeing in the canal, dressed with all their water gear and wearing of course the life vest. She was fascinated and enjoyed it all so much.  Which puzzles us as to why, when Sara the group leader hunkered down to her level and asked if she would like to go in the canoe Izzy responded as she did.   Sara is so lovely and said she would find a vest to fit and she could experience this.  The answer was a very firm "NO THANK YOU"  when asked why by Colin she said she did not want to go into the cold water!  Of course the children must experience what it is like if the canoe capsizes in the safety of the group.  Colin tried to tell her that it was unlikely they would capsize, these children had been MADE to rather than it just happened.  Still no chance so another outdoor activity crossed off the list.  This child is certainly never going to be athletic or do things that take her out of her comfort zone ......... ah well she is lovely and healthy and enjoys life so we can't have it all.  

Such a delight

It was with great pleasure that a young, well not so young man as he reminded me came to visit last week.  Though I knew this young man since the day he was born time plays its tricks and I had not seen him for over twenty years!  I had a little idea of how he was doing as I picked things up when I would go to visit his brother but never actually saw him.  We had such a lovely time catching up with the years. He is now a grandad and I found it was lovely to talk about how his life has unfolded over time.   I think the last time I saw him he was in his early twenties!  The coincidence was that he  along with his dad, worked at the nursing home where I now live. Though the nursing home was pulled down and our new apartments were built in its place what a coincidence that he knew exactly where I now lived and walked the same gardens when he worked here.   It was a lovely start to last weekend and I am looking forward to meeting up with him again, hopefully we will not leave it so long again!  

I will leave you now to begin your day or go to sleep if you are one of our far away ph member and friends!  I shall get ready to begin my day now.

Please take care, the flying ants are such a nuisance right now and today also the weather is supposed to be very hot, something we do not tolerate too well with ph.  

I love and leave you all again with thanks for the comments and the likes for this blog (if indeed you did like it, maybe you didn't) though I hope not.  

Warm love to you all and thank you so much for being so supportive to me when I post something.  

Carole xxx

Colin just arrived home from the gym with the words "the gypsies are back" What horror as we will again see the mess and destruction and once again the children cannot play football on here again.  I hate it I really do.  I hate the mess and I hate how they destroy all the beauty surrounding them.  I despair, my day has gone from good to bad with that one sentence.  Last time, well every time to be honest the allotments are raided and all their bounty taken and the butcher had his shop broken into.  Whilst we cannot know for certain it was them that did this it follows a pattern.  All is well,  then the gypsies return and destruction and theft all around.  Gypsies are forced to leave within a month and all is well again, though lots of clearing up to be done first.  Hurting.