So much to get right

I feel as though I am caught in stasis, that envelope I opened yesterday has stopped me in my tracks. Until I know if my ex is going to sign over Jeffery’s grave, all my planning and organising has halted. Part of me wants to just put it all to one side, to start on the next list of things that I want to find out about. Equally, I feel as though I can do nothing until I have completed the first list. It’s odd when you put together a plan of this nature, one that is so important to yourself, that doing anything out of order, just feels wrong. I had planned to sort out every detail of what happens to me once I am dead, then, to step back along the timeline from there, right up to today. Yes, I did sort of slip off the agenda when I requested the DNR, but that was more to do with opportunity than anything else. Somehow, making a call to my doctor about that one thing didn’t feel right. I had this feeling that I would be wasting his time, whereas, adding it into a call about my medications, meant I was killing two birds with one stone. To be honest, all of the final part, always seemed as thought it would be the easy bit, we all know how to find a funeral director, as millions do it daily, the steps that go before it, are the harder ones. Maybe that’s why I chose to start at the end and work my way back.

I have this need to find out about all the steps my life might take from here to the end. I want to know about what care is available and to find out about how I go about putting it all together. I guess what I am wanting is to be able to have a set of envelopes, just like the one I will put together, once, I have paid for and set up my funeral plan. It will contain everything that Adam will need. All the steps, including all the phone numbers of who he has to speak to, so he isn’t left like most people are, without the slightest idea where to start. The second envelope I want to organise is about the help, that is available to assist Adam with my care, as the end gets closer. I even want to find out about the local hospices, what they can offer in either just respite care, so he can have a break, or in taking on my full care, if it’s appropriate. That, though, doesn’t match up with my current feelings about my end of life, but, it is something I need to look into. Once more, the major stumbling block is the fact that I’m housebound. It’s not as though I can just call a taxi and pop round to take a look at them and have a chat. I don’t even know if there are costs attached to spending time in a hospice, or anything at all about their funding, outside of the fact they are charities. My knowledge about this whole area is zero.

I have always been perfectly open about the fact that if I am finding it all to difficult, that I am not adverse to speeding my end up. Which, of course, puts me into that horrid position thanks to the law, of having to choose, a time, probably long before I would have, if the UK practised medical euthanasia, but it doesn’t. I have to be able to take the action myself, so that Adam, nor anyone else, is involved. There are a limited number of ways I could manage that even now. My favoured, an overdose, has so many issues surrounding it, so I have a lot of research to do, to be sure that if I take that route, I get it right. Yes, there is still an if, to be honest, it all depends on two things, my dignity and how well they continue to control my pain. Which is part of the reason that I need to understand fully, all the options, as I get only one shot at all of this, just as we all do.

Right now, I have no care what so ever, other than what Adam does for me, and that doesn’t equate to what I believe is called personal care. I can still wash, feed and clothe myself, but the time will come when I can’t and I already know, that I don’t want Adam doing all that for me. Not to mention that he has a full-time job, and it’s just not fair to expect him to do everything for me. I don’t need an outsider to tell me that my strength is waning and that certain jobs are becoming more difficult. Outside of making a phone call to the Social Work Department, I don’t know where to start, or what they can even offer. I know that the time has come, where I need to take off the blinkers and admit, that the time for assistance, isn’t that far away. It’s hard, though, we have managed for so long, without even the thought of assistance, just making the mind shift, is still a problem for me.

There is so much about the next few years that I don’t have the first idea about. I don’t know what made me wake up to my future, probably just that internal feeling that I am moving into those closing phases. I’m not saying I feel as though I am about to die, anytime soon, it’s just that I feel I am beginning to fail, if that makes sense. I don’t like this idea that we are quite simply expected to take things as they come, surely we should be prepared, given an idea at least as to what to expect, and what can be done to help us through this process. I truly hate the way that the medical world will talk freely about our conditions, until you start asking questions about how it all comes to an end, and what to expect along the way. I just want to get from here to there, without any nasty surprises and without finding out too late, that there were things I could have done, not to just make the process easier for me, but also for Adam. There have been too many times in my life, that I have heard those words, “Well, if you had just……”. I want to speak to all those people who just love to say that, now.


Please read my blog from 2 years ago today – 07/02/2014 – Me or my body

I don’t know how I got there or what made me do it but I woke this morning not on my left side, more twisted towards it, something that meant I had been for who knows how long putting pressure where it hasn’t…..




Who am I now?

Last night I found myself going over and over the same question in my mind, probably a question we all ask ourselves at times and probably one we should ask more often, “Who am I”. Having declared so strongly just a few days ago that “I am still in here”, it suppose it was the logical question to follow it. I don’t think in my life I have ever set out to be anyone in particular, past the same goals of wanting to be a wife, a mother, a friend and a family member, the simplest goals of anyone’s life. Along that road I became many other things, a sales person, a manager, a DJ, a disabled person and some how now an inspiration for others, not one of them were ever in front of me as a goal, they just happened. But I had ambition to continue my career to, learn more and grow in my business abilities, to stretch beyond the abilities I had and increase my salary to improve our lives. Right now I have lost many of the things I wanted from life, the freedoms and rights that I thought would be mine for the rest of my life, suddenly those freedoms are gone and I am where I never gave a second thought to when I was young. Becoming disabled is so easy a thing to pretend only ever happens to other people, to strangers as well, well it couldn’t happen to you or your family, you are good people, hard working, loving everything you have been told you need to be to lead a good life, no it could never happen to you. Oh yes it can!

So who am I now? Well I am the wife and the mother I thought I would be, but even there I am not either of them in the way I believed it would be. A wife is a someone who is there are a lover, a person to share the trials of life and the joys of the good as well. A wife is a homemaker, a cook, a cleaner, a giver and more, not one of these things feel as though any but their title applies. I can’t bake the bread or care for my home, I can’t fix and repair, or garnish our house with the extra’s that change it into a home. A mother is a care giver, the guide and the shoulder to cry on, the person who is there to boost and reassure when needed and the individual who helps in what ever their child may need. Yes I can still fill some of those roles but limited by my ability to reach my baby and help her, especially now when she is facing so many problems and joys. Both roles feel so much that they have become titles with no substance, as I physically can fulfill the requirements, the job speck that comes with them is far from being fulfilled.

So who am I now? I have become the patient, the experimental Guinea pig, to prod, watch and test, to learn more from and tick boxes on a list. I am here as a novelty not seen by many doctors, one that allows them to build knowledge and experience, while faining sympathy and empathy as they don’t have a clue. Someone to pat on the head and send away with some new tablet to try, as well, you never know, it might work better than the last. I am the person they can’t help, so they don’t really want to see me, as I am a reminder of there inability to cure.

So who am I now? I am the disabled person who is stuck in my home, who couldn’t escape if there was a fire, who never see the outside world past the view from my window. I am the annoying little voice on Twitter who shouts all the time telling the world that they have to listen, not because I am anything different but because I am one of many who no one knows is there. I send out messages of hope, of love, words to inspire and to amuse, I am the one who finds pictures of animals and cute babies to smile at. I am the person who reminds you that the world is filled with others like me. I am the one that won’t let you forget, who will nag and remind, who will plant real life in front of you in the place you go to escape. I am the women who has live a life and refuses to stop living it. I am the person who shows you all of life’s nasty tricks and the truth of living in a world of pain and confusion. I force you to listen I pull you into my world and I expose the nasty truth of how it can all go so wrong. Who’s body refuses to complete the simplest of things, as it seems to forget that the loos in the bathroom. Who’s forgets to eat, to wash or to change, who has no memory of what needs doing or how it is done. I am the body the wonders around looking at everything a new everyday with memories of 20 years ago but unsure of yesterday. I am person who watches minute by minute for a message on Twitter to tell me the world is still there. The person who will in ten minutes time ask “So who am I now”.

Family Attachments

I am so tired today, it is one of those days that we all have from time to time, I just don’t seem to be able to get myself going, there is no oomph. I know we all have days when all we really want to do is curl up somewhere soft and warm and just stay there, not sleeping just relaxing. Part of me screams at me when I feel like this to just do it, after all I am not working and I have no reason other than personal, to be sat here writing, reading tweets and answering them. There is no real reason why I shouldn’t just take a day out and switch this thing off, but I can’t. Just like I did when I was working, I have made a silent commitment to not let anyone down, and there is a great feeling that I would either disappoint my readers and friends by not being here, or that I would worry some of them if I simply vanished for a couple of day. It is one of the characteristics of my personality, that I won’t let people down, the thought that there is one person out there that might be disappointed, is enough to keep me going.

Next week though, my presence will be reduced as my daughter is coming to see me on Thursday and Friday. I haven’t seen her now for about 2 yrs, this is the first opportunity she has had to come up to Scotland since she transferred from San Fransisco to London. Settling into a new job and a new city has of course been top of her list of things to do. She is planning for her wedding to be in Balloch, it is where the rest of her family live including three of her brothers, she will stay there allowing her to have a room to stay in, if she stayed here, she would be sleeping on the floor as we don’t have a spare room. It will be so good to see her again and we have so much to catch up on, although we have actually been talking more often on the phone than we used to. It is strange to think that my little girl is actually about to get married for the second time, how did I get that old, that I can actually be in that position? Although she will be getting married less that 50 miles away I will still not be there, but she is working on getting someone to live stream it, so that I, and some others who can’t attend can watch online. It is wonderful how things have changed so drastically over my lifetime. When I married her father, my grandmother, the only one I ever knew, was too ill to make the 60 mile journey, my grandfather came and there were loads of photo’s for her, along with the flowers from the church that I had sent out to her, but in my heart she was missed. She died a week later, but I would have loved it if she could have seen it, there wasn’t even the option of a video in those days. I may not be there to see it, but sitting here really will be a fantastic improvement.

Missing all that big events in life is really the hardest thing to adjust to. There have been a few family gatherings that Adam has had to go to by himself, while all I could do was sit here as though nothing was happening. To most of his family I have been invisible for a long time and most of his cousins I have never even met. As for my family well I haven’t seen any of them now for about 8 or 9 yrs, my younger brother appears in my life from time to time, he will phone and say all the right things, ending the call with promises that he will stay in contact and then vanishes, not answering my emails or the messages on his voice mail. It is the way my family has always been and it is something that to be honest I simply accept, like many things in my life. My family is now just Adam and Teressa, and I feel blessed to have both.

Everything about being housebound, leads to friends and family leaving, as it means they have to be the ones who take the time, make the effort and the journey. After a few years you know exactly who your friends and your family really are, they are the ones who really care and think nothing of doing everything and anything that it takes to just be there, and that is true love. I thought I knew what that was years ago, but I was so wrong, it has taken all this for me to discover the truth of real love, once you know what it really is, then it is easy to accept the disappearance of the false people, as they are no match to the real ones. The love of family is so important but even their love can be as false as a friends, something I have learned and something I have accepted, and something has freed me to actually enjoy what is real.


I am sure you will all know the experience I have just had, one of those showers were the purpose of getting clean vanished to be replaced by it’s sheer enjoyment. It’s strange how things like that happen at times, an everyday act that suddenly changes into something else, everything is just right and you are taken off to another place were the chore no longer exist. Just standing there letting the hot water wash over me was a sheer pleasure, that there was a temptation to stay there longer than I should. I doubled my usual time and enjoyed every second of it. Adam and the district nurses don’t like the fact that I insist in showering when I am a lone in the house, but it is one of those things that I have maintained as private time, no interference and no feeling that I have to do it when told, rather than when I want.

If you have a chronic condition I expect you will understand that feeling, but those that don’t will probably be firmly on Adams side, I can see it, I’m not mad yet. Safety is one thing, independence is another and I, like so many things in my life, form a balance between the two. As I point out frequently I know when it is safe and when I am just being pig headed, for example I stopped climbing ladders when I knew my balance would no longer allow me to, it had nothing to do with the million times that I saw the shiver pass through Adam when he realised what I had been up to, it had everything to do with choice. The word ‘self-determination’ are more frequently used in connection with the free choice of the people of a country to be governed as they choose, I and many others take that world further, that an individual person should have ‘self-determination’ when it comes to how they wish to lead their lives, that basic acts of showering, eating, sleeping should be at the individuals choice, not when a carer can be allocated to do these things for you. There will be a point when I will have to accept that the choice has ended, as unfortunately when carers are required, those cares are looking after so many that it has to be on a planned system so that all are helped, but I am still capable and I should be allowed to be so unchallenged, until I ask for help.

Disability heightens the importance of self-determination, no able bodied adult would want rules applied to them, that they have to follow, for no good reason. My determination to stay in control I am sure is one of the reasons that I am still as active and together as I am. In an ideal world there would be on carer allocated to one patient and they would be with them not just as a carer but as a companion, enabling that person to live a full and productive life, cost makes this impossible. I have realised lately that I should write much of what I want the future to be down, so that those who are responsible for my care know, as I may not be able to tell them myself at the time. I have a horror picture in front of me of being eventually being in a care home and being forced to sit in the main room were there is a sing-song or a bingo game going on, that is my idea of hell, I can’t imagine being unable to tell them and that I would rather go to my room on my own when things like that are going on. That is clearly just one of many things that I have strong feelings about, but a detail care plan written by me and lodged with my Dr is probably one of the few ways I have any chance of a future with a degree of happiness.

I have already looked on line for a formatted structure, without luck so I am going to have to put one together by myself, once I have it sorted I will post it but don’t expect to see it soon as I want to get it totally right first. I have planned my life so far and care so far and found my route to happiness, I want that self-determination to the end.