Getting on with it
Many people say about we ph ers how brave we are, how we do not make a fuss and just get on with it. The truth is what option do we have. To sit and moan at family and friends wold soon drive them all away and would also impact on our own lives. As I have said before to sit and moan does not change your diagnosis, it does not make any of this go away so yes - whenever I can I do just "get on with it." I do my best to live a full live, although of course limited because of my condition.
Now if I listen to the latest fact which say we can, if the meds work for us live to eight years now then I, like many others are defying this. I am coming up to my nine years diagnosis which was in fact on my birthday - 21st July - nice one huh. So I continue to defy the odds, little old me who never believed it was possible. Yes here I am, sill "getting on with it" to the best of my ability and so hopefully will continue.
Life is not without issues. I recently suffered bradycardia which is a very low heart beat. O.K for athletes but not for me. This is quite frightening as if I read it up on google, (really should not but hey ho we all do) it does say that our hearts can suddenly stop beating, likely when we are asleep as our hearts generally beat even lower then. So for a few days I must confess to being rather nervous. To try to combat this I did energetic things to bring my heart beat back up rightly or wrongly. Though my beats did rise as expected they quickly fell back to being very low. Quite why this was happening I had, nor still have any idea but the fear that I would just go to sleep and not wake again without all my affairs being sorted once again (yes been done before but things change) did worry me so I am making it my goal now to deal with any issues that need to be resolved it is too late for it once I am gone -- and putting new letters in my piles to be read after my death. This is not a morbid thing but just another one that needs dealing with now. My oxygen level has been falling rather low recently too, again something that needs to be addressed and I will deal with that shortly.
So here I am in a zone that not everyone with ipah will ever have reached but I am comforted in knowing that some of my ipah friends have reached that goal and gone way beyond it. I pray that I too am in that position and have quite some time to go on this earth. I never really listen to our life expectations as I have beaten them time after time so once again I will now push this one away and move on to the next - just as all my brave pah friends do too and I will just "get on with it" once more.
So yes life is just a bowl of cherries, some nice ripe and juicy days and some that - well to be perfectly honest are like a cherry just on the turn, a bit yucky but still looks great on the outside! With the support of my family and friends and of course my A Team once again I will soldier on. I have much to live for and enjoy, ph will not stop me enjoying life.
Rewarding but oh such hard work
As our garden continues to develop we see many neighbours stop at our wall for a chat about it. It appears to be generating a lot of interest as they all watch the progress. Yes even in this awful weather we have been having Colin continues to go out in his muddy wellies and shift around heavy sleepers, made even heavier with them being continuously wet and dig trenches for them to go in. Once sleepers are in he has been riddling our tons of soil, all spoil from making the garden all in a heap in a small part of our garden. This is to get decent soil for the beds and raised beds, of which we now appear to have many! So it is encouraging to note that our neighbours are all very impressed with how this once - what we thought small garden - now not so small is coming on. Once all the shrubs had been removed, around 30 feet we think it has really opened up our space.
Yesterday I just had an urge to see if I could do it. I had been stopped by both Colin and Michael in the past as they thought it would take it out of me. Feeling positive I went out and between Colin and myself we devised a working plan. I cannot lift the shovel to fill these boxes but clearly Colin can. So there we were me lifting the boxes Colin filled and then sat on the edge of the wheelbarrow. I would riddle one and then leave it for Colin to empty the small stones out and refill. As he was doing this I have moved on to the next etc. We were both delighted as to how quickly working like this we filled barrow loads with good quality top soil. I was so proud to see the raised planters being slowly filled and with compost added ready to receive plants. I managed to help him to fill about seven barrow loads before my beating heart and my shaky legs said enough so sadly I left him to continue and I came inside to lie down. Still once again I achieved something I was told would be too much for me so never say never should now be my new motto. Today I shall go out and fill some of these beds with the plants we have waiting. We have deliberately decided to keep one bed narrower than the rest and we shall put up trellises and grow beautiful climbing flowers, evergreen that throw out gorgeous flowers at certain times of the year so if any suggestions - we already have sweet peas - please tell me. Not ivy as we have some outside on the rockery and that is ample for us. Remember we live in the UK with quite varying temperatures too so they need to be quite hardy. Suggestions please.
I am now a member of the happy to compost group. Daily I manage to find things to compost after I have given the best bits to the rabbit. We are not waster of things but inevitably in all households there is waste. I now crumple up old toilet roll things, you know what the toilet roll is on when we buy it, name eluded me totally! I compost our used white kitchen rolls along with banana skins, pineapple rinds , melon skins etc. t is amazing how much waste we have but clearly not fit for human consumption so I am pleased to be able to put it to some use this way. Today shall go and purchase a water butt. Sadly no place to put it yet but there will be shortly.
The space in front of our utility windows is to be used to house a small summer house and we shall have it flagged so that we can put a fire pit on it and cook over it on clement days. The bar b q will sit off to the side of it and then will be my bit of garden to grow a few veggies. Though this is quite a small space I feel sure it will look amazing when completed. Already there is a huge pile of hard core in a heap waiting to be put down and once we have some trellis and a bit more fencing erected this project can begin. I still am waiting for my washing post to be erected so still using my daughters. I fear my need for my own will be the very last job to be done. We are making use of the very many blocks that were taken up from our house before we began to build. Colin has decided to make a path out of them at the very bottom of our garden and Danielle's - bet it is completed before I get my my washing post!
We managed to get rid of the huge pile of wood chip that were left on the path by our friendly landscape gardener. Much went onto our own beds and some is in bags waiting to be used later on. We then put more down on our family next door steps ass though they had some we used some of ours to make theirs thicker, it looks much better. We were then talking to a good friend of ours and we just mentioned we had some here. He was after some so he came with his lovely wife and a load of bags. He took all that we had left so it was a very successful mission getting so much and using it all up. All were well pleased.
We have our cruise coming up in a few weeks and once again our lovely cleaner Lucy will take over our house with her husband. On the way down to join our ship we are staying overnight in Poole so that we can visit with some of our family. We do miss them and always look forward to pleasant times spent together, My sister in laws health is not too good right now as she has suffered yet another blow to it but like me she 'just gets on with it" so I am so looking forward to seeing her and giving her the biggest hug I can. We are hoping that later they will be able to come up here and spend a couple of weeks staying with us. Our niece has now given dates she can come up from Norfolk to visit with us so again how lovely it will be as we have not seen each other for years! These visits along with one to come from a fellow ph friend and her hubby later in the year are all dates on our calendar to look forward to. Colin is leading a walk up here in Yorkshire for the Costa Blanca Mountain Walkers that are here for the summer. One couple booked down for that will stay overnight with us so lots to catch up on there too. Again all positive things to make our future one to look ahead to with pleasure.
Oh bummer!!!!! After this I said was going to plant out but the weather has turned and it is pouring down!! unlike Colin I hate to wade through mud, our lawn is still not laid so to venture out means walking on the bare earth or planks of wood laid down to make it easier. So I will just have to hope it does not rain too much as I really am longing to see these man made planters that deck the garden have some beauty in them instead of just bare (though beautifully riddled and composted) earth.
Tomorrow I have an appointment to hopefully get more insoles to make life easier. I walk over to the right on both feet and though we did have some ridiculously expensive, though well worth it insoles made they only fit my walking boots. These have made a huge impact on how I walk when I am wearing them but clearly not for everyday shoes. After lengthy appointments with specialist that deals with this and physio to show me exercises and my notes being lost I can now, after eighteen months at last see the people who deal with making and fitting these. It will make my life so much easier and hopefully take away some of the pain in my right hip and lower spine. This will make a huge difference to me so this is one appointment I am rather excited about.
One appointment I am dreading is coming up next Friday. That is the hairdresser. Oh how I hate these. My hairdresser is truly lovely and so she is not the problem. I just hate having my hair messed with.
I have left it way too long and right at this moment in time I do not even bother to try to straighten it so I look like a shaggy dog. My hair is also in my eyes. I loath that my once lovely straight hair turned curly. Izzy loves it left to curl on its own but oh not me!!! I will get Colin to take a picture of it and you will see why! So next Friday I will beat my demons and go and be sorted out, colour done and hair cut! That will be the end of it for around another six months if I can get away with it - oh such torture!
I do not generally do evening outings, always my best in the morning. We did make an exception last week though and went to our favourite Indian Restaurant with our friend Michael to discuss our holiday coming up in Javea. It was so nice to relax and think about this holiday ahead of us later in the year. We all reminisced about when we lived there, the things we did, the places we saw and the lovely places we ate in. Michael already has a list of where he wants to go and where he wants to eat! For me though just being back in the place we loved, the place we made our home will be delightful and of course seeing all our friends. Some have already put our dates in their calendars so I know we will have a great time. Christine my lovely family from way back to the 15th century with whom I did a lot of my family tree research will be around then, no holiday booked so I know we will both be delighted to catch up, plus she loves Colin and he her so happy times ahead.
Jayne Venables and her lovely hubby are on the high seas right now enjoying a cruise. She is on the ship we will be going on in a few weeks and just about the same venues so it sending us daily updates. i must say it all looks amazing and is whetting my appetite even more to be able to go on ours. Izzy gets ever more excited and is planning wha to take with her, one thing is the cardigan that she took from her mom as she says is smells of her moms perfume. She will facetime her mom whenever we are in port and have the chance so all will be good.
We are also hoping to get two or three weeks holiday away in the motor home. It really is a home from home and the comfort it gives us is just amazing. I love to go away in it and know that if necessary I need not even step out of the door, all is to hand fo me and I feel safe and protected in it. We hope to go down to Wales or up to Scotland. We need to sort it out between all our other dates in our diaries but one holiday we really want to manage to do before the end of the year sets in.
This date is in our calendar yearly. No we do not go, it would not interest us at all but my daughter and her lovely partner Chris do go and join all the fun with Chris's dad. They generally have a box so do things very upmarket, something I would hate! My daughter is so different to me in that respect, she likes her hair done, nails, make up etc. where she got that from is beyond me, likely my mom who was always beautiful dressed and turned out. This means that we can have Izzy to stay with us for a few days. We all enjoy this time and I love that at night there is no rush to get her home we can take out time with everything we do. She played Hallelujah for me the other night on the piano and I must say it was rather good so looking forward to hearing it again. (Tess she is now using two hands so is getting on pretty well.) We will have her for three days and though we will be exhausted at the end of it once again such memories will be made.
I always admit to being no computer buff, why even this blog, though all typed by me will be posted by Colin as I have never mastered the art of doing it. So I have a question to ask you buffs. Why do people follow your page but not friend you? I had notification the other day that a friend from long ago, sadly we lost touch has now followed me on facebook. Why did she not just friend me, send me a message etc. is it that she just wants to see what I am up to with me being able to see what she is up to. is it a case of hoping to maybe see bad things about me (we did have a falling out years ago but thought that was resolved) So if she is reading this (and I assume she will as she followed me) please friend me if you want to do so. it would be lovely to be in touch. I do know some follow for the wrong reasons. I have had some who messaged me saying they want me to be their friend though they live in places I have never even heard of. (these are all men ) They get upset when I do not respond and keep coming back so I just block them. I am thinking therefore to change the status on my page to friends instead of public. So if you are able please friend me if you have not already done so. The reason I have left it public for so long is because of somebody who means so much to me who does not friend me but I know reads my blogs. Not sure how we can get round this but he is savvy enough I hope to sort something out. (T - you have not seen the new house yet, please call around as we would both be delighted to see you again).
The end is in sight
At last our new hall is almost ready so will be able to attend my own church instead of one a mile or two away. This also means the end of baking weekly for all the unpaid volunteers who have restored it and the end to all the washing I have been doing weekly. Colin says on Mondays our house looks like a chinese laundry with around 15 shirts, bedding and towels from a couple whose washing I do. Small price to pay for all they are doing for us all but yes I am still relieved the end is in sight. Today I will hand over two dozen savoury pies I have baked for the last time for the team to enjoy on Monday morning. Tomorrow I will receive my last load of washing so I am hoping this weather gives us a break and gives me dry but windy weather so it can be dried outside. Then hopefully all will be back to normal and we can enjoy our newly refurbished hall.
Right so apart from needing Colin, who is on a bike ride now there is nothing more to say for this blog but I do need him to take a pic of my hair which is unbelievable right now.
I will love and leave you all now. Thank you once again for taking the time to read my ramblings and to like the page. I love comments so if you can be bothered then please leave one.
I did it. The weather was kind enough for me to go out and plant. Among other things I have planted antirhinums, phlox, campanula, lupins `and a whole variety of others Sill one bed to go so will go out and buy more. Then the very last will be the climbing wall so a time to go before then. Now I hope for sunshine for them and the hope that I did no kill them all!. Now time for a bath!