Saturday, 19 August 2017

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

2 comments:

  1. Hi Carole,
    I just wanted to say that I was really sad to hear that you were leaving the group. I also want to thank you for setting it up in the first place as without the group I would not have found the answers to my recent diagnosis.

    I have just sat and read your blog (I don't normally read people's blogs but I was drawn to yours!). What a lovely read! I'm sorry you had to cut your holiday short, I've had to do that on a few occasions and it sucks.

    You have made the right choice in having time out/leaving the group; spoil Izzy and enjoy yourself for as long as you need/want and on those days that you can't, just take care of yourself.

    Take care & enjoy those good days and rest when you need it.
    Much love,
    Sasha (Anita Blonde) xxx

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    Replies
    1. Hi. Thank you for the message. I must say though that it was not me that began the group but the very lovely Anthony Roe. He had a dream he could bring us together world wide. Sadly he lost his life to ph. Before the group grew as large as it is he asked for help from the USA which meant there would be help on two different time lines and Paul took up the post of admin, working together it meant patients reaching out could find help day or night. On the death of Anthony Paul asked me to take care of the UK side. In turn I asked for and was blessed with two new admins Lyz for the UK side and Nicole in the USA. He would be proud to see we now have over 2300 members! His dream is an amazing reality. Go well . Xx

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