I want it so badly

I mentioned the other day that I had received an appointment to go for a breast scan. In this country, once you have passed the age of 50, it is one of the checks offered by the NHS for free. I did receive an appointment last year, but I chose not to go, as I explained a couple of days ago. For some reason, I have been putting off phoning them, to see if the situation of wheelchair access had improved. I find the phone at best difficult, and at worst, my worst enemy. I don’t know why, but my emotions react far more rapidly, when, I can’t actually see the person. I don’t fully understand the damage that has been done to my brain, but what I do know, is that tears appear when I least expect them, and frustration, builds rapidly, if, I can’t make myself fully understood. Hence, the fact that I normally ask Adam to make all calls on my behalf. So why did I decide that it was me who should pick the phone up instead of him? Well, because it’s me with the issues about going there, not him, it somehow made sense at the time.

Once again the girl on reception was rather useless. I am beginning to believe that all NHS receptionists are actually trained not to listen, as I have yet to find one who does. When I said that you’re not allowed to bring your own chair, when travelling by hospital transport, she more or less called me a liar, which I found really hard to get past, without losing my rag. I really don’t appreciate it when I am told I am wrong about something I know for a fact, I am right about. Every time I book an ambulance, I ask if I can take my own wheelchair, as it makes life so much easier, I am always told the same thing, no. It didn’t help matters, that she was another one of those people, who wouldn’t allow me to complete what I was saying, and answered what she expected my question to be, rather than just listening. As always happens in those situations, she was telling me things that I wasn’t interested in. I really don’t understand why people do that, as it achieves nothing. It turns out, that though that there are only two slots each day, put aside for wheelchair users. So they have canceled the appointment I had in February and are now sending me out another one, this time, for March. For me, that is a positive, as it gives me the whole of next month, hospital free. Annoyingly, though, those appointments are at 12:00 pm or ten minutes past, not as is best for me, first thing in the morning. Once again, I did try, but she said they were the only two slots for disabled patients.

I still don’t know how I feel about the whole thing. This whole business of arriving in a highly visible ambulance, right in the city center, at what I now know will also be lunchtime for many people, it really doesn’t sit well with me. Humans love to stare and I’m not comfortable, about being the one, they will be staring at. I suspect, that if they actually spoke to all their disabled patients who are affected by this, that the majority would feel the same way. As I said before, I fully understand the thinking behind putting this center where it is. It makes it wonderfully accessible for the able-bodied, but for the rest of us, it’s really not appropriate. When you arrive by ambulance at a hospital, no one pays any attention, it’s normal. In a city center, it’s something to gawk at. Last time I justified not going because I didn’t think there was a need for it. I know that reasoning doesn’t add up, any more than the one I came up with the other day. If they were to tell me I had breast cancer, it wouldn’t change anything for the better, just supply more people to poke at me, and possibly, a change to the already ticking clock. Before anyone thinks that I might be scared of this, well think again. I have gone through a breast scan before, and that time, it was because I had found a lump. It had actually burst before I reached the scan date, but they did it anyway. It really is just a combination of the above, plus this growing desire to be just left in peace, especially, from everything medical.

I have been finding this feeling growing lately. I don’t know what sparked it, or exactly when it began, but it is growing. In a way, I even now resent the time it takes each day to use my nebuliser, inhalers and even to take my tablets. Yes, I know it all adds up to only about forty minutes out of my day, but I do frequently find myself sitting in the kitchen, staring at it all and wishing it would all just vanish. It has now even extended to my psyllium pancakes. It stupid, I know that, but we can’t change feelings. Feelings don’t obey us, they are one of the few things that we can do nothing about, other than feel them. Clearly, I am not just going to stop taking any of them, I would just like to understand, why after all this time, this is how I suddenly feel? I simply can’t be bothered by this whole paraphernalia that goes with being ill. I have more than adapted to the lifestyle. I have adapted to the fact that I am housebound and all that goes with it, but right now, I just can’t stand anything to do with doctors, or the stuff they insist, that I need to take. The best way that I can put it, is, to say, that I want them and all their bits and pieces, to leave me in peace.

I guess that sometimes we just want the impossible, to be made possible. I yearn to have just even one day, one, where it wasn’t governed by an alarm clock telling me, it’s time that I took this pill or that. I was pleased when they told me on the phone that my appointment would now have to be in March. I was pleased because, I will then have had two whole months, without trips out to see doctors. Inside, I am screaming with a need to never go out and see any of them ever again. In the year I became housebound, it felt like I was at the hospital every week. I was seeing this person or that one, in the attempt to get my hand back working, so that I could once again go out. They failed. Over the following year, it slowly returned, but as it returned my tiredness increased ten-fold and my ability to walk, diminished. I might have had two hands, but I wasn’t able to go anywhere. Then came four wonderful years, when I didn’t see a single doctor, I didn’t leave here at all. I knew it was too good to last forever, but boy was it good. Then once again, my health went downhill so fast, they were back in my life, and there has been no escape ever since.

Peace, glorious peace. For someone who sees no one, goes nowhere, that should be easy. It should happen every day, but there is none, not in the way I am looking for it. I want it, but I can’t really explain it, other than that one word, peace, and that I know that I want it.


Please read my blog from 2 years ago today – 31/01/2014 – Loneliness

Adam didn’t make it home until long after I went to bed, I watched Eastenders and headed straight of to bed, with no struggling to stay awake just so I can spend more time with him. I have wondered often how I would…..




This week never ends

Success! Well, let’s say an improvement. Last night, I split up taking all my different inhalers by an hour and instead of my heart going into hyper mode, it stayed reasonably normal. My resting rate actually remained between 97 and 100, something that I am not going to worry myself about. Especially after hearing from a couple of very helpful people who convinced me that it wasn’t to be worried about. I am not convinced that I actually need to allow a whole hour between the meds either, but I do think keeping them apart by a buffer zone is a good idea. I think that lungs are actually sensitive organs and it’s really too much to expect them to deal with all of them at the same time when they aren’t used to them. I do intend to start bringing them slowly together until I find if I can or can’t cope. I really don’t want the entirety of my day to be spent thinking about the next drug to take and when to do it. There is also a danger of course that without Adam here, that I will simply forget, as I have done millions of times in the past.

I had just lain down on the bed yesterday afternoon when the phone rang. For some reason that I can’t explain, I hadn’t put my earplugs in before lying down. Normally it is the first thing I do on sitting on the side of the bed, but yesterday, I just lay down not even in my normal position, I had my feet flat on the mattress and my legs crossed, a position I was never going to go to sleep in. No one calls during the day, other than Adam and Jake. I had heard from Jake twice this week already and Adam had spoken to me just after 1 pm, so I was surprised it was ringing at all. To my greater surprise, it was my daughter, Teressa. She should have been at work so that alone meant I was ready for bad news of some sort, I was both right and wrong at the same time. She and a couple of colleagues had been going over to an outsourcing unit that does some work for Saga and they were going to check on progress with their work when they crashed on the motorway. Teressa doesn’t drive and was lucky to be in the back of the car wearing her seat belt. She had been totally unhurt other than taking a bang on the head. I was surprised that she wasn’t in the hospital, but she had been checked over by the paramedics and they told her to go home and not go to sleep for the next six hours. It was her driver who had been at fault, he had been going to fast and was impatient and had tried to undertake the car ahead. The other driver clearly didn’t see them illegally maneuvering behind them and they picked the same moment to change to the middle lane. They hit that car along with the central barrier and two other cars before landing up in a ditch. The car was a total right off and no one knows where the missing wheel is. All three of them walked away unscathed.

Once home and having convinced, almost, her husband that she was fine she wanted to speak to her Mum. It’s odd how we all want to talk to our parents when things go wrong. No matter how much my Mum destroyed my life, she is still my Mum and I used to phone her whenever I needed that comfort that no other person could. Teressa may be in her thirties now, but she’s still my midget and it’s so nice to know that she still feels the bond that I do. You would think that after us spending most of her lifetime on different continents, that having her here in the UK would make life so different, but she is still too far away to give a cuddle to when it’s needed. Oddly, knowing that she is just in London is one of the things that made my being housebound harder. When she was on the other side of the world, unless she came to the UK there was no way we could just drop in for lunch. So OK, I wouldn’t probably have ever travelled all the way to London just for lunch, but you get the idea. She is close now, not so far away that contact is impossible and I still can’t get to her, no matter how much she might need me. I had to even watch her getting married by webcam, despite the fact that they were less than 30 miles from here.

I have grown so used to being housebound. To all the things that can’t be done and all the things that I have to miss out on. I can say with total honesty that there isn’t a single person out there who I have no contact with any longer, that I miss. Even those people who I thought were going to be my friends for the rest of my life, yet vanished because I became ill. Even when you are housebound, you have to accept that the world moves on and to most of them I am sure that I am nothing more than fleeting memory every now and then, as they are to me. Not being able to just pack a bag, jump on a train and go to London to visit my daughter, to see her home, the area that she lives in and the places she spends her time and happiness, hurts. It is one of the problems of modern life, families are scattered all over the world. As we age or become ill, we can’t expect them to return and move just to be near us, they have their own lives and they have to live them. Even the modern amazing systems we can use to stay in contact, can’t make up for that actual time spent together. I don’t care what anyone says, not the telephone or even skype comes close to actually sitting with a real live human face to face. I am lucky, I have Adam, so I have the love, the company and care that we all need, but for those who don’t have a loving partner who has stood by them, it must be a million times harder.

There has over the years that I have been housebound, repeated concern shown for the fact that in a normal week I don’t see anyone other than Adam. The amount of able bodied people who can’t accept that I don’t need anyone else, that I am truly happy in the life that I have has amazed me. I fully admit that if it hadn’t been for my blog and all the people I have come across online, it might be very different. I truly believe that as long as you are busy and happy doing the things that keep you busy, that even when housebound, you only need that one special person. That doesn’t mean I don’t miss things or some people, I just admitted that I do, but you have to accept the limitations life has brought you and live within it. I do understand the concerns of other, of course, I do. If I had been asked 20 years ago could I be happy being housebound, the answer would have been a total no. None of us knows what we are capable of until we are there and even the things we were once scared of, can actually turn out to be the total opposite.

Please read my blog from two years ago – 12/09/2013 – Where is the detail and description

Yesterday and today so far have been filled with discomfort that just won’t go away, I have to say I am getting rather fed up with not being able to just sit without this solid hands with band right around my body. If you place you little finger on your lower rib, keeping your fingers…….

Staying happy

Sorry, sorry for going over so many things in the last few days that have been so serious and somewhat a downer, it’s a fact thought that chronic illness has so many things attached to it that make it easy for it to sound as though the world is a terrible place to be part of. That is also one of the pitfalls of writing both the truth of how things are plus the emotions and feelings that are produced by them, when pain is as constant as it has been for weeks now, the result will be that I find it hard to see that far past it. Yesterday morning I felt as though I would explode if I didn’t just say it all, put it out there in black and white, so I did and strangely as it often does, my mood lifted but just writing it, the pain didn’t change but I felt I was somehow more prepared to keep dealing with it, rather than letting it take over. I have said it many times and I make no apology for saying it again, writing even if it is just for yourself, can make the world of a difference to how you deal with things. When I was married for the first time round, I used to keep a sort of diary, it was a mix of my feelings and what was happening in the children’s development along with anything that had happened to us all since I last wrote. I didn’t usually write daily but I wrote at least once a week adding in photo’s, cards and any keep sakes along the way. My husband was in the Navy and not there to see it all, so I wrote it partly for him, but also for the kids, so they could look back on their lives, read the reasons behind everything we did and get to know themselves at a time they would never remember. When we spit he destroyed a collection of around 15 A4 books, the purpose and feeling behind all of them lost for ever. Those books, just as this blog, got me through some very difficult times, there is nothing like reading back and actually finding out for yourself why you did or why you felt that way at the time, because as time moves on, you truly forget the truth, or maybe you change it in your mind to protect yourself. That word positive keep turning up in the tweets I receive, so many don’t seem to understand how I remain happy despite all of what goes on, well I thank my writing for a lot of that, when you can pour it out and not carry it around unsorted and unsaid, life is easier. Some have said that I should be talking about much of this with Adam, well life isn’t like that, imagine what it would be like to come home from work, to be hit day in day out with nothing but a list of things that are wrong that day and the thoughts, unordered and unprepared about how it was effecting me. No one could take that and stay as a couple, this way, well this way he knows before he reads that some of it might be hard, but he has just seen me with his own eyes and I am still alive, still managing and still smiling. We talk, but we talk about mainly the lighter side of our life and we have the time to enjoy it without constant moaning from me. I don’t think I would have managed so well without his support, I don’t need to sit with tears in my eyes for him to know I am in pain, or not managing well that day, but life isn’t just about me, it takes to people prepared to support each other, as yes, he has problems too, he’s human.

I don’t work at being “positive”, I just am, my way of dealing with everything that has happened in my life isn’t to wallow in it, that just isn’t me, nor do I lock it away inside, I have always said that anyone in the world could ask me a question and no matter how personal that question, I would answer it. My way of dealing with hell, is to face it head on, to not allow it to take over, to not hide it, or deny it, for me, that way it doesn’t have the power to pull me down. You can’t laugh your way out of pain or traumatic situations and memories, but if you are prepared to face them head on and to write or talk about them without shame, fear or anything less than the truth, it breaks it power and hold over you. For anyone who thinks for this to work my life has had to have been simple and straight forward, well if you read all of this blog and
“Touching Space” you will see the truth is very different. For me the result is that I am at ease with everything in my life, at ease and content with my life as it is. I know that not everyone could just change totally their lives and their attitudes, to a totally open life, but I honestly think that even the tiniest steps towards working through and not hiding, can really change how you feel about living.

I actually don’t like that word “positive” when it is attached to me, as it sounds as though I have made some kind of decision to sit here with a stupid grin on my face and I laugh my way through pain, I don’t. I didn’t decide in any way what my reaction to my health would be, I went through all the normal steps of grief when I found out my future, but after that, well I have just got on with it, in just the same way as I have lived all of my life to date. Happiness isn’t a choice, it takes time and it takes honesty, but once you have dealt with all the negative issues surrounding you, happiness is what is left and it’s worth all the work needed to get there. Don’t get me wrong, I don’t look at my future with happiness, I don’t want what is going to happen any more than anyone else does, but I know that is I deal as I have to date, with each step as it comes, I will get through it, if that’s positive then I am, but I just see it as being logical about a future I can’t change.