Its Christmas!!!!!!!!
and don't we know it, with the shops all blasting out their carols and the christmas lanes full of gift ideas. For ph people it can be incredibly hard. We want to not be the "party pooper" but oh how hard it is not to be. Evenings out mean we spend the day in bed to prepare our bodies for the jollities taking place in the evening and the following day in bed to repair our bodies. No matter how hard our families and friends think they understand our illness they can't possibly really KNOW just how hard simple tasks are. Why, well because they see us carry them out from day to day with no real idea of just how difficult it is for us to do. They can't see our pain and they cannot really comprehend how hard it is for us to breath. Don't get me wrong, I am not saying our partners are not the best people to have around us, of course they are and without them our lives would be oh so much harder BUT....... no matter how hard they try to understand it is only us living with ph that really gets the full picture. Today Colin, my husband was cleaning out the fridge, a job I would have done weekly before ph but now find this task so difficult as bending down and getting back up is so hard to do. Now it is done whenever I nag him and as he was doing it he said it was not a job a man thinks about very often whereas for a woman it is just part of our weekly task on our to do list.
Oh how I am longing for the cure, the days when I can do a task without thinking of the energy it takes or how difficult it will be for me to recover after the particular task is done. Friends and family see me carrying on as normal when they are around with no idea of just how hard it is and how much I will suffer afterwards. Is there any way for us to get them to comprehend, well no, not unless they carry out these jobs with the straw in their mouths and the peg on their nose, this is the only way for us to get them to see how hard life is and I bet many won't do much or carry on for long coping with everyday tasks in this way. Do I want them to fully understand, no I don't because then their pain would be even harder than it is now watching us living with this disease. I prefer them to see me getting on, albeit not as good as before, but to have no comprehension of just how much we ph people suffer.
Do I wish we showed it on our faces just what is happening inside, no I don't. The fact that we don't is an advantage, the only good thing we have going for us. I don't want people to be able to see just how much ph robs us of our insides working correctly, of the problems it causes us daily. So I shall just do what we all do and carry on until the cure is found. In the meantime I shall listen to my own preaching and be thankful when I am offered help, I shall accept it gladly with a smile and learn to sit down and let them get on with it. Please all do the same over the festive period, don't burn yourselves out. It takes us so long to recover from sheer exhaustion we get easily so don't put yourselves into the firing line for it. I shall also give thanks to my oh so patient husband for all he does for me with never a complaint. His life too has been turned upside down and though he can never comprehend quite how I am feeling his strength, love and encouragement are a huge help to me in my battle for a life with ph.
Most of all enjoy this festive season. It is a time families come together to celebrate and to share in the joy of this time of year. Maybe, just maybe in 2016 the eureka moment will be here when the cure is found, we don't know but I do know it WILL come, just playing the waiting game. To this end I reposted a video that was sent to us from Kath Grahams' Facebook page a while ago back onto mine, Should you wish to see this video from researchers here in the UK where they tell of the first time ever we have real hope, then check out my timeline. The video is green, well not really, its in Kaths' beautiful green garden and I only reposted it yesterday so not far to scroll.
Hospitals at Christmas
We know some of our ph family is or will most likely to be in hospital sometime leading up to Christmas. Kath Graham, a double lung and heart transplant patient two years ago is currently at Papworth, though hoping to be home for the weekend. Kath has done so much to promote organ donation, working tirelessly to get people to "see" the end results as she tells them of how her life has been transformed since the operation. She has been begging people to please listen to their hearts, if you would accept an organ you should be prepared to give one. Let us hope Kath is back home for the weekend with her loving family and the new member, their puppy. Chin up Kath, we are all rooting for you.
Family fun over the festive period
We will be having my daughter and her guy Chris, plus our Izzy and my son Haydn for Christmas lunch. So looking forward to this and to that end I have begun to prepare part of the meal. I have baked two desserts and they are now sitting in the freezer, albeit one of them does not have its lovely meringue topping on yet, can't do that until the day. If you can do a little to prepare now then do so, don't make it too overwhelming on Christmas day. My cake was baked and iced weeks ago and last week my mince pies were cooked and frozen. None of my family likes Christmas pudding so instead we are going very simple with home made deep apple pie or a lemon meringue pie alternative. Its not about the food, its about being together but my puds do go down well. Added advantage is that if there is anything left over from dessert we are having more family coming to stay over for three nights from boxing day onwards so a ready made dessert for one night will already be in the fridge.
Colin will be in charge of any games we play, always a wag he can decide which game when and always gets a laugh. Izzy will, of course, be too excited with her new gifts to be bothered about any of this.
Trial Update
My trial co-ordinator rang me today for an update on how I am feeling since last week. The answer I gave her was just the same, no change either for the better or the worse. I had hoped for an improvement in my condition but I am worse on the meds than off it. We decided that I would continue for the next three weeks until my hospital visit on the 6th January, then it will be decided what to do. Has ANYBODY reading this come off ambrisenten, which we all believe is not working for me any longer and gone onto macitenten. The reason I ask is that though i know it is the same group of drug and so essentially will not work for me if ambrisenten isn't some people say they have changed and feel better. Any messages re this would be so gratefully received. So in the meantime I am still on the trial.
All change.
I have a tv in my bedroom. Now I know we are not supposed to as it doesn't aid sleep but it sure helps me on the days and nights when I spend a lot of time in bed. My tv was quite old and had begun to lose its colour which meant Colin had to come in and do his magic, I am no good with technology. As I also now have spondolitus of the neck, {severe} it has meant always turning my neck at an angle to see the tv where it rests on a shelf which creates even more nerve pain. Enough was enough and I asked that we change it to one on the wall, a curved one so that it rests in front of the bed. Colin agreed so off we went on our search for the correct one I didn't want a huge one, just a nice neat one, on a tilt bracket that would do the job. Oh my what a world of televisions are out there now. Lots of research was done and away we went but on seeing the particular one we decided on we were told they didn't have the size we wanted in stock.. Back to the drawing board, or in this case computer to find it on a site that had it and could deliver quickly. waiting now for said delivery. Whilst we were in the shop I saw some nice new phones and so decided to change ours for them. Very stylish but it takes time to get all the numbers in from old and learn a new way of doing things on it. Again Colin came up trumps in-between buying, copying, cutting and fitting many of my photos into walled frames. I was so tired of having frames everywhere on tops of units but didn't want to get rid of having my family around us so it was decided this was the way. The end result it really pleasing and on searching for new photos on our photo app it was so nice to be able to sit and pick out newer, updated ones. Now I have asked him to do a family photo on christmas day and make sure they all leave with a copy already in a frame, well we do have loads of those spare now!
Enough! Now all go off and get yourselves organised to have the best Christmas you can. I do hope you all stay well my ph family.
Much love to you all
Carole xxx
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