Wednesday, 30 January 2019


All things come to those who wait

I received a call yesterday evening from a hospital a few miles from  me, not my local one and not my specialist one either.  I am to ring up to make an appointment to go to the ambulatory ward for my ferritin infusion!  Not before time and a lot of wondering why it was taking so long and what were the issues around it.  Anyway the specialist I saw two or three weeks ago did what he said, got the results of my bloods - again - and talked to his colleagues and I assume the rang my PH guys and the outcome  is an appointment for the said procedure.  I know my headaches will lessen over a two to three week period when I have had it and hopefully will feel less tired plus my legs will benefit and should not be so jumpy.   So on Sunday at 9.30 I will have my long awaited infusion.  Due to being classed as an asthmatic mine will only take around 20 minutes so 45 mins in total from arriving to leaving.  Good job!  

My pain clinic manager rang me to arrange an appointment for that so we fixed it for the end of February.  With these two appointments out of the way I will be on track for any further developments regarding my health that is due anytime soon.   Once again how blessed we are that we have the NHS that see to our needs.  Yes we may have to wait but in the end generally things get done and we can get on with our lives.

Happiness tinged with sorrow

The snow is due to fall later this week.   We woke to a beautiful sunny but cold day today so we decided to walk on the canal.  The weather was so lovely, crisp and fresh and though I was sensible and wore a mask I could still feel the cold on my face.  The mud crunched beneath our feet as it was icy and the canal itself had lots of ice pockets.  Not many people were braving this cold so we mostly had it all to ourselves.  We promised that once we reached Hebden Bridge we would indulge in a drink and a big home made scone at our favourite cafe.  

Just as I was tiring we hit the bridge and with relief walked over it into the gorgeous town of Hebden,    It always sickens me when we reach here to see the leaflets up in the widows asking if anyone knows anything leading to the capture of the person who murdered 13 year old Lindsey Rimmer and then  dumped her lifeless body weighted down with a concrete boulder in the canal to be found a few months later.  She had been strangled and there were signs of a sexual assault on this very young girl.  Though this all happened in 1994 nobody has come forward with any real ideas who committed this crime. As ever when I walk past the shop she entered at 10.00 pm to buy cornflakes it makes me very sad.  Police think her murder is linked to a serial killer but as yet no real answers for her family.  So though I do love the very quirky town it always leaves a bad taste in my mouth. 

By the time we had our drink  (and yes a scone each with jam and clotted cream) it was time to return home and so we caught a bus back to the top of our road. We see no point in trying to do too much as I do not want to risk a ph day in bed - how I hate those wasted days - though appreciate they are a necessary part of our illness from time to time  to get us back onto an even keel. They force us to take the necessary rest we need. I was pleased to see how many steps I had achieved and know the huge benefit I gain from this. 

Alexa helping me to sleep

Like lots of us with ph sleep often eludes me much to my distress as the nights are soooo long.  However I decided to ask Alexa for help and I had her playing the sound of a storm.  I love storms, the most spectacular ones I ever saw were the ones in Spain from time to time.  I find it rather soothing listening to the rain pelting down and the thunder crashing whilst seeing streaks of lightening zig zag across the sky.  It was relaxing -  that much is true - but to be honest no sleep came my way as I was waiting and counting the seconds between each peal of thunder.  So sorry Alexa it was a no to the app for me.  I have tried a warm bath,  hot milky drink, soothing music and a good book.  None of them work for me so back to the drawing board.  

A good way to raise money

Always looking for new ways to raise money for ph I came across a great one the other day.  The church that is part of Izzys's school is trying to raise money for a new garden in the grave yard  and the grave stones have to be moved round to the side of the church.  Not the bodies which I find so sad but they are old so all is within the law.  Anyway each child is given a full tube of smarties and asked that in return once sweeties are eaten they do jobs for 20p pieces.  The new tubes are shaped rather like a 20 p and fit easily into the tube. Each time they complete a job they get paid in 20p pieces.  You will be amazed at just how much a smartie  tube holds.  I wont give the game away, just try it and see. Once each tube is filled it is handed back to the church and the children can, if they wish take another full tube to try to fill again once emptied of sweets. The children are so intent on filling their tubes they are willing to do any job without any argument.  I loved this idea and happily pinched it from the church!

Me and my girl

Izzy had friends to stay over the weekend so I baked them some shortbread men and took around lots of different coloured edible gels so they could all decorate them.  I also provided them with smarties and a few jelly beans to be cut and used as noses.  We left them all to it and I hope they did not make too much mess!  This turned out to be a huge success and one they have already asked if they can do again!  It was no effort on my part and to see the joy of Izzy and Harry when I took over  everything needed for when their friends arrived was lovely.

I am gutted a little at Izzy right now to be honest.  Well more to the point gutted FOR her.  For a whole year she had waited until there was a place for her on a gymnastics course.  Now I have said before she is not a natural sportsperson but has tried to do somersaults for as long as I can remember, to no avail.  Anyway her turn came and along with her parents off they went for her taster session.  After 15 minutes she refused to do any more, despite cajoling from Danielle so the outcome is she will not be having lessons.

When I saw her I asked why as I knew she really wanted to do them.  Her answer was that she did not know anyone there and none of the teachers either and felt silly that she could not do what was expected of her.  I told her that was the whole point of the class!  She would be taught how to  perform all of the moves. I reminded her that she did not know anyone when she began her swimming lesson or when she began school, that she would have made friends.  She said yes I know that now.  I think she is a little sad she did not stick it out but her time has come and gone.  Her place will have gone to the next person on the list, one fortunate child who has got the position that should have been for Izzy. I really wish this child of ours would toughen up but sadly it seems she is just not the forward pushing child she needed to be when she had this taster.

Pain free times ahead

I note that my tennis idol has had his hip resurfaced.  Colin has had his done a few years ago.  I really hope for Andy that he can return to tennis but sadly I do not think he will, at least not in the capacity that he left it.  I wish him a speedy recovery and most of all to be pain free at last.  How wearing to be in constant pain so though he faces a life without any more wins at Wimbledon he will at least come back to the game in one way or another. Go well Andy.


I am not getting into the politics of this one on here except to say how I wish they would all get their acts together and stop behaving like kids in the playgrounds.  This is a huge thing for us and we need to at least try to get along.  I have been watching politics live on television and admit I sometimes cannot make sense of what they are talking about.  I think a big problem is that when we had the referendum three quarters of the MP's wanted to stay in the European Union so how on earth can we expect them to vote for a policy they never wanted in the first place.  However the will of the people must be upheld and they now need to work together.  We cannot go back and have another referendum as this defeats our votes, it means our will counts for nothing if we can keep going back until we get the vote they want.  A lot hangs now on them coming together and making the very best deal they can for us against a EU committee that is determined to make things as hard as possible for us.  I will be glad when the word Brexit is at last put to bed and we move forward, for better or worse.

Quiet times here

So not really much going on in our world right now as medical issues need to be resolved before we can head off to further places.  The house is as of today blanketed in snow as it fell overnight and we are pleased to see the roof is showing no signs that heat is escaping as we have no bald spots!  I am still searching for the two huge lamps I need for the lounge but fear the ones I see in my minds eye do not exist.  We have friends due over for a meal on Friday so I will prepare what I can today as with ph one never knows how they will feel on any said day.  Another wonderful task I shall deal with is to strip my upright vac down. We rarely use this as my robotic one does such a good job but my cleaner does on the new carpets and it needs a sort out.

I hope your days are more exciting than mine are at present.  We are hoping the snow does not stop us getting the car out to collect Izzy from school. The end of our close does get pretty icy and there were a few accidents last year, minor ones to be sure but non the less I prefer not to have any issues.

I wish each and every one of you good health and safe driving in the present conditions.

Warm love to all and thank you in advance if you would like to comment or click like to this very boring blog!

Carole xxx

Oh, I booked my place at the conference in Oxford in May.  If you have not done it please make sure you do so soon as I am told places are going fast.



  1. Wow hasn't Izzy grown. Lovely picture of you glad you are getting about. Take care xxx

    1. Was lovely to talk to you today. Let’s do it again soon xx

  2. Once again Carole, I enjoy your blog. One of these days I will go back and read them from the beginning, just like reading a good book. Thanks for sharing your lives with us. And do check out Pinterest and places like Wayfair for lamp ideas.

    1. Sadly not seen what I want in either too. Thanks for the thought xx

  3. Thank you. I often go back and read Hazel Roberts, she sadly lost her fight after transplant. Hope you are doing ok. Xx