WHY I DECIDED I WONT BE HAVING A FUNERAL. ( Do not read this if you have a fear of dying - these are MY thoughts and everyone has their own )
In my life there have been many awful moments, some of these hurt so much even today over 50 years later. On top of those there are also the deaths of loved ones. We all lose someone we love in our lives and as well as much loved grandparents, aunts and uncles I lost a brother when I was around 40. It still hurts to this day. As time moved on in time I lost my father who struggled illnesses for many years whilst my mom hurt her own health taking care of him. Then came the time my mom felt she had done enough, she wanted to go. Suffering from the beginning of a disease that would - had she lived long enough - have taken a lot of her memories she just gave up. She said all the food tasted too sweet so refused to eat. We promised her everything if she stayed with us but it was not to be, she slipped away when we had only been gone for a short time, just before we returned to sit with her again.
On losing each and every special person in my life one thing I will never forget is following the funeral car holding the coffin whilst I was in the car behind. I struggled so much with this each and every time. There was also the knowledge that one day I would be the one in the car in front, the one in the box. It made me shudder to think of it as I hate being enclosed.
On being diagnosed with pah and being very very poorly indeed it seemed my time was running out. When we returned home from quite a long stay in hospital I researched giving my body to medical science as two people I knew had done so, it’s not so easy. Indeed I was informed that my body could not go to the facility I wanted it to go to which was research for ph. Then came another other blow as I was informed that they had a surfeit of bodies so likely would not take mine. This was something I never expected so I had to change direction.
I knew that I did not wish to go in a heavy wooden box so set out to deal with my own funeral. Colin cried as I sat in the study researching what I wanted. It had to be simple, it had to be quick and it had to be done the way I wanted it to be. To this end I chose my coffin, one made of white wickerwork and I chose my own music. All very simple. No fuss which is the way I like to live. Even today thirteen years later I know that my wishes are still written down and in a file in the study waiting for the day they would be put into place, all was well. I say WAS well because since then I have changed.
I decided I do not want a funeral. Why put my family through the pain I always hated when I attended them. To that end I, along with my husband, decided we would get rid of my remains using one of the companies that does it all quickly and efficiently with no drama and nobody attending. The company gets paid whilst we are alive and we know exactly what will happen. So no coffin, likely a shroud and nobody waiting behind my coffin. My body will be taken away and disposed of. I have no issues with that, to me when I am dead I am dead. Sorry if you disagree but as I said these are my thoughts and not written with intent to cause distress or argument.
On discussing this with my daughter I was surprised that she seemed a little upset. She asked if she would be able to just go to the crematorium, the answer was no as I could be taken to any crematorium, it would not be named. She asked if she could have the ashes. I told her yes if she wished but that I had no particular place where I wished to go. She can keep them under the bed if she chooses. I think she understood a little more when I explained that there would be a bit of a do at some stage as a celebration of my life, everyone can have their say about me for good or bad. For my son I think it matters not what happens. He will just go with the flow where my daughter is way more sentimental than he is. So we have paid up. We have the card that will be used to inform the company on our deaths and then leave it to them. We both feel relieved and it takes a burden from our families. Not to everyone’s taste I agree but it is what we both want. We both hope this will be a long time coming, we are not anticipating our demise and I hope to be talking to you all for a long time to come.
HOLIDAY.
We had never been to the Isle of Wight so decided to take a holiday and check it out. Driving down taking our time our first stopover was at Bicester, Of course we had to go to the Designer Village though quite why as I did not need or want anything and nor did Colin. Hunger though needed to be satisfied so we managed to get a table in the Village at a neat looking restaurant. Fortunately we ordered a starter to share, I say fortunately as when it was time for the main course Colin’s salmon arrived but my chicken was nowhere to be seen, I really prefer when we are eating to eat at the same time, I hate that one eats whilst one waits, Time moved on and I begged Colin to begin as his salmon was going cold. When he finished the waitress came over and I asked about mine, She had forgotten to order it. Huge apologies followed with me saying it was fine but not to bother putting it on now as we were ready to leave, We did not make a fuss and demanded nothing but the manageress insisted on taking off the service charge and also our shared starter. Out we went with Colin feeling full but me not so much. Fortunately there was Pret close by so I got a sandwich. Onwards to our hotel for the night,
The day after we headed down to Southampton so we could easily catch the ferry over to our hotel the following day, I was looking forward to seeing our hotel which was called Luccombe Hall in Shanklin. What a place and what a room. We had a garden room which was very private with its own hot tub outside on the terrace. I hate them but Colin made much use of ours after his morning exercises. Our hotel overlooked the sea and it was all very gorgeous. Shanklin is a lovely place with lots going on but in an old fashioned laid back sort of way. The houses looked lovely with the thatched roofs and we did so much with our time
Just metres from our hotel was the Shanklin Chine. How we loved it at night all lit up with the waterfall and amazing fauna. Well worth a visit. Each day we tried to do something new though a had a bad ph day one day and then another half a day. It did not concern us too much as I went to bed with the sun ( yes it was t shirts all the way ) shining through our patio doors. Colin enjoyed a small whisky and dry whilst in the hot tub and I rested ready to enable me strength to get ready to go out to eat. Though the restaurant in our hotel was fabulous and we ate there the first night when we are away we like to try different places. We were advised well and had some really super meals.
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| Shanklin Chine |
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| Model Village |
The Needles looked good but I was too poorly to go and have a proper look and I was disappointed to see some tacky amusement’s around. I know people expect them but I felt they were rather old and not the best maintained but as I was not using them what the heck. We both agreed we loved Cowes and wished we had had more time to spend there. It was quite a novelty to go over on the Floating Bridge.
Before too long it was time to head off back home. We were sorry to leave such a lovely Island and my sister and my mom had been a couple of times so we hopefully followed in some of their steps. Both of us agreed we need to return, still a lot to see on this beautiful tiny island.
Initially we had said we would stop overnight on our way home - this did not happen. Once we started driving the roads were pretty clear and Colin just wanted to keep going so away we went. We stopped once just before we reached home so we could eat. It was silly to drive so far without getting out to stretch our legs but it just seemed so easy and we wanted to get back. It had been Izzy’s birthday when we were away ( the big 13). so we wanted to see her at least before she went back to school as a teenager.
Since arriving home I have had a couple of lousy days and all ph related. You know how it goes. Heart rate way too high, blood pressure way too low, headaches and dizziness and fatigue but today I seem to have come out of it, I have an appointment coming up shortly at Sheffield so will see what they think of state of health. I recently bought some barefoot shoes which I love so it will be interesting to see how my walk test goes wearing them.
BAREFOOT SHOES
The reason I bought these is that I have a lot of trouble with my toes bleeding. My systemic scleroderma specialist was concerned as she said it was a flag for sepsis. As I was already immunosuppressed due to my meds for this condition my immune system dropped even lower to a dangerous level. Anyway these shoes are great as my toes do not touch each other and they as soooooo comfy. I love them and no more bleeding toes and no more spending lots of money on compseed plasters so a win win for me,
GARDENING
On arriving home from holiday it was evident that there had been an awful lot of wind and our garden needed a thorough sorting out, I was not good so it was all down to Colin. I decided I wanted him to take our strawberry bed out, It produces loads of big juicy berries but I struggle to bend down to pick them and then standing up again and Colin seems always busy with the rest of the garden. So no more strawberry patch but I shall use it to grow other veg. No idea what yet so will leave it lying fallow until spring. In the meantime our turnips we planted are almost ready, the winter cabbage is growing well and the onions I planted around the sides are growing well. I have copious jars of plum jam made along with plum gin and plum brandy liqueur so that tree was a blessing.
OUR ROAD STATUS
We live in a cul de sac and the road we have to enter to go anywhere has started to collapse and has been closed to traffic at the half way point - which is just below our cul de sac. Well we could not believe our eyes when on Sunday despite this being very dangerous one idiot of a driver decided he could make it through using the pavement and the tiny space left open in the road for a water course. How they made it I will never know. Just inches to spare and they were fortunate that our neighbours dry stone wall which is beginning to collapse due to the road collapse did not fall on them. My friend lost a two year old son many years ago due to a wall such as this collapsing on him bless him, She never got over it ( who would ) and forever would not allow the mirror on her wardrobe be cleaned as it had his hand prints on it. So my anxiety to be fair was NOT for these idiots, were the wall to collapse on them then they were fair game BUT the path is used for prams and walkers and Izzy uses it daily. Their stupid action could easily make the wall even less secure and lead to it falling on an innocent passer by. Colin took a very clear picture of the culprits and since then big stones that can still allow water to run clear have now been placed strategically to stop idiots such as these. So back to normality with all that it entails. My appointment at M2 Sheffield is on October 4 so if anyone else has an appointment on that date please give me a heads up. Colin has something to do here on the 4 th October so is unable to attend sadly. November will mean another trip but this time to my systemic scleroderma clinic. I always feel reassured after these visits and hope I do these times too.
Just a quick heads up. Lyz Clements who had a transplant has written a post about how at last her pressures etc are doing better. She puts this down to a particular diet she is doing and her specialist is happy with this. It sounds interesting so maybe check it out. It is always good to see reassuring posts such as this one. .
Well I feel I have just about caught up so I will leave you now and wish you all as good health as one can have. I also send warm love to each and every one of you. Take care.
Carole xxxx
