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

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