Its been a funny old week

There hasn't been any change for the better with regard to my ph so roll on Monday for the 24 hour monitor.  I return to Sheffield for a further part of the study to infuse us with ferrinject, or not as the case may be.  It will be great to talk to my specialist  team then and see where I should go next with regard to my ph.  You all know by now that I hope to go back on the hickman line.  I know of all the disadvantages but for me by far the best way forward that I know of at this time.

Today we decided to head off to Leeds to pick up a few bits needed for our cruise which is looming ever so close now.    As my study is on the 15th and 16th June and we leave on the 18th to head down towards Southampton I do not  want to be rushing at the last minute.  We never know what lies ahead so always best to be prepared so there are no last minute hitches.

The weather here is lovely today so later this afternoon we are heading off for a cabin fire and a light tea whilst warming our toes!

 My daughter and her guy Chris will be joining us along with Izzy and maybe Harrison, I don't know if he is over or not but I hope so.  I am looking forward to some family time and we already know how much Izzy loves these times.  It struck me that I have mentioned cabins and fires before and I am not sure if I have made this clear.  The cabin is NOT ours, it belongs to a very good friend of ours and he has in fact for three cabins in his very extensive garden.  Plenty of fire pits too are around so we can choose which cabin to use. So you can see that though we at this time do not have a cabin, having left it behind at our last UK house we can still enjoy these times.

Follow up.......  as you can plainly see we had both the children and their parents.  A good time was had by all and so lovely to catch up with the news.  Diaries were out at the ready to pencil in dates for ours and their holidays and the dates we can have Izzy over the seven week holiday period.

How lovely too to see how times change.  Instead of me being the mom and preparing food etc for all it was my daughter and Chris that shopped and made the delicious meal that was served.  So nice to have somebody else take up the making of a meal.  One of the joys of our children growing older and taking responsibilities.  

The fire was a great success though to be honest the children loved going around watering the flowers with their water pistols and riding on the handles of the brushes like a horse on its way to Banbury Cross.  Time to go home once the children began to flag and now we too are home for a well earned bath.  The smoke does make for stinky people.  We tidied away everything from the cabin before we left and now it just needs a quick visit tomorrow to tidy away the debris from the fire, too hot right now.  

We are still house hunting but alas there seems to be very few around that meets our criteria being private as we hate being overlooked by neighbours with a garden that can take a cabin but not be overlarge as we do not wish to spend all our time gardening.  We shall continue to look, surely one day we will find the right one. 

I read a post this morning sent in by Lori Wilhelm Belmont who is asking what keeps us going  when we are tired mentally and physically from phighting ph mentally.  The answers were all so interesting and it appears that most of us won't give in to ph.  We must keep on the snakes and ladder game of the ups and downs.  We must not be defined by our illness.  We have to learn to accept that our journey is one wth many highs and lows.  Ph is a strange disease, unseen, unheard but silent and can be deadly.  We not only have to fight the disease itself but the society that doesn't understand it as it is so rare.  We have to phight for or rights constantly.  For me the key word is phight, yes I phight for the joy of living even when I can't get out of bed.  For seeing my grandchild Izzy growing up into the beautiful little girl she is, for watching her milestones, for watching my children enjoying life with their respective partners.  I won't lie though.  Yes I too have times when it seems too hard, when the burden seems too heavy.  We also feel for the people around us that have to see out struggle, for our partners/carers who carry such a load. All of this is very real but we MUST keep going, we are making memories for the people we love and care about, we can't give in.      

Living with ph is hard, no doubt about it, it is a scary place to be in and we can see no end to it, just a steady decline but I still do believe the cure is around the corner.  We have to be prepared to trial the drugs, to be the warriors taking the new meds to the next level.  We can't lie back and let the phight go on around us without determination to take up the phight  again when we have recovered some of our strength.  We must keep going. We need to be be prepared to take to our beds when we have to so as to get our strength back enough to get up and phight again and again.  Remember we with ph all understand how hard this is but we are a family and we take up our weapons and phight.  There is strength in numbers and the encouragement we give and receive on our ph page is amazing.  Lori stay strong my friend.  We are all here for you. 

I found this on my computer Facebook page this morning.  It seemed so apt due to the trauma and hurt I have gone through in the last few weeks.  Oh how this made sense so I thank the person who first posted it and I now pass it on to others who are in the same place that I was recently.

I finally plucked up the courage to say goodbye to a very good friend.  All the things going on around him were so terrible and hurting for both myself and him but family is family and of course he must  stick with his through thick and thin.  He cried when he read the letter that Colin took down for me but he must surely have understood why I had to break ties.  He himself said his grandchildren had got too far with all they were doing.  It wasn't just to me but to the wonderful hospital staff that care so much for him.  I can't begin to tell you quite how much trouble they have caused for them but I will say it is huge. For my own health and the stress I have been under it is good it has ended.  All I can now hope for is that they arrive daily around 7.00 to make him a complan and take him shopping and make him soups and be there through thick and thin and also every evening for two hours and the weekends.  I say this tongue in cheek because of course they won't.  I have no doubt they will book a holiday for all the family, my friend paying of course and then tell him again, as they did at Christmas that is is quite unsuitable for him to go. This is when they would likely wish I was still on the horizon but I can assure you all that I will not.   You have all seen me so upset on here and I have received so much support and now realise that my life has to come first.  

I took back the keys, placed his Baileys, which he keeps at ours or he said he would drink it all too quickly {we don't drink it}in his fridge and also took his garage key and put them all back where they belonged.    Two days after this my phone rang and it was his cleaner asking me where her money was as she had cleaned and she was told to come to me for money!  She also asked where the vac was and I told her to ring my friend.   I cannot feel any responsibility now as I am no longer a key holder and as I have blocked all the families calls as they were so vicious I now have peace. It does still hurt that lies have been too about me and believed.  This is the saddest part of this whole scenario.  I have accepted though that I cannot change who chooses to believe, those that know me well know the lies are just that, lies and to that end I just now walk away with my head held high and my integrity intact.   

I got to see my son this week too which was a bonus as his oh so gorgeous girlfriend Anna was up for the weekend.  When I asked what had made her come up from London for such a small amount of time she looked at my son, smiled and said "for this face" oh how cute is that.  Uni will be over in a few weeks for three months so she will move back in with him and find a job and earn some money.  I am blessed with both  partners of my two children.

Well all for now and I hope you are all enjoying your weekend as much as we are here.  

Warm love to all and thank you for liking and/or sharing, you have no idea how the simple act of clicking the like button or going on to share this blog means  to me.   It means that I can see you do read it, that you acknowledge that you have done so, it makes me want to keep writing and connecting with you all.  

Go well my friends.

Carole xxxx