More than “Me”

It’s one of those days, a day when I know I have things to do and things that need doing, but all I want to do is go to sleep. Keeping my eyes open is hard and if it weren’t for the fact, I’ve felt like this a so many times before, I might be sitting here wondering why, but I’m not. I know that fatigue is very much part of my life, but yesterday, just like a couple of times last week, I had more than one visitor in the same day. I have known for as long as I have been housebound, that having people here exhausts me, but when I land up with a series of visitors, it totally drains me. At 9 am, the incontinence nurse was here to measure the amount of urine left in my bladder following going to the loo. For the second time, it was borderline, just below 100mls the level where it starts to become dangerous if not cleared. Which means she wants to come again next week, for a third reading. At 11 am the district nurse arrived. She was here for about half an hour and we have agreed going forwards, to have just two visits a week, to see if we can get my bowels into a routine. They will be here every Monday and Thursday, as, without a doubt, three times a week is far too much. My body is simply not responding to the more aggressive path we have been trying.

If all that wasn’t enough, the podiatrist showed up just after 2 pm, but she at least was far happier with my feet than she has been in the past. Since I have been having the carers in to shower me, they have also after the shower, been putting cream onto my feet to stop the skin build up I had in the past. She now wants me to ask them to once a week file my nails gently, to help stop them from getting as long as they have been between her visits. I forgot to mention, that of course, Adam came home for lunch, so my entire day was filled with people coming and going, it is really no surprise that today, I find myself floored. For the majority of people out there, all that would have been nothing. For me, it was like being in the middle of a shopping mall and every single person wanting to speak to me. I have lived so long seeing not one other person than Adam, that it felt like bedlam. I have to admit that I feel better about the next few weeks, now that the district nurses are only coming twice a week. Somehow, just having people here on four separate days out of seven, feels far less invasive. I don’t know why one day less makes such a huge difference, but it really does.

There is one other thing happening today that also always makes me sleepy, it’s a really odd one as well, and I think it has more to do with wanting to run away and hide than actually going to sleep. I am having problems with faeces incontinence. It hadn’t happened for a really long time until last week, then suddenly following my enema on last Friday, it returned. I spent the whole of Saturday, going to the loo and finding yet again, I needed to clean myself, today is exactly the same, but the quantities are larger. Having to keep going back and forward to the loo, just in case it’s happened again, isn’t making any of this any easier. I have been living with incontinence, on the small scale, on and off for the last few years. Suddenly, wetting the bed a couple of weeks ago was tough. There is a huge difference between wetting yourself slightly because you stand up, and wetting yourself when you’re asleep and not waking. The follow-on events, which there have been two of, well they have been so much easier, simply because I can clear it up and dispose of the evidence myself. Yes, I can clean myself up when I mess myself, but the fact I don’t feel it happening, well that worries me. How long will it be before it’s not just a small amount and I lose control totally? Even as it is right now, it’s just one more thing, I can do without. I never thought that I would say this, but I am so glad that I am wearing this nappy, that way, if it escapes my buttocks, it won’t go very far.

It is really beginning to feel as though I’m not allowed to have what anyone would call normality. Right now, I would just love to ask Adam to call all the people who are coming in to help me, and tell them not to come back. I know that would be a stupid thing to do, but I desperately want some peace and quiet, and I don’t see it ever happening again. It’s not as though I can ever ask for a holiday, as holiday or not, we all need to shower and go to the loo. This is my life, not just for a couple of weeks, but forever and I’m only now really beginning to understand what the true impact of that is. I have been so locked up in the emotional side that the reality, well it had somehow slipped past me, I was too busy feeling sorry for myself.

I have never really seen me as a “me, me” sort of person, but that is exactly what I have been lately. I haven’t been able to see past that emotional “Me” and to see the bigger picture. The practicalities of my life are never going to be the same again and nor are they ever going to the same again for Adam. Every tiny thing in my life now affects him. His home and his life are now invaded by people four times a week, because of me. OK, on three of those, he is at work, but he still knows that there are people here. Knowing Adam, he will be worried as well that I am dealing with it all with ease, and I haven’t thought about his needs in any of this or his feeling. It might all be happening to me, but it’s happening to him as well. It is easy to say that all of this is out of our control in many ways, but just because it’s the way life is, doesn’t mean that we have to like it, or be happy about all of it. Somehow, I have to find a way of making all of this easier on him, as well as on myself. This is going to take some thought and I guess some time as well.

 

Please read my blog from 2 years ago today – 13/07/2014 – What was that?

I lay down last night with nothing in my head other than to simply go to sleep, I was so tired and the muscles in my limbs had been screaming at me all evening, sometimes I am actually grateful that I no longer have taut stomach muscles, as it is only the muscles I put to constant use that ever ache like that. It always takes me a couple of minutes to relax and let my body settle on the mattress, even……

Which, what or way next

The mental overload that I have found myself within the last few weeks is becoming exhausting. Why is it, that when life finds a chink in your mental armour, it then pours in more and more until you want to scream at everyone, “Just leave me alone”. I find myself exactly where I feared when I agreed to the help of carers. Finding those glorious gaps where I am alone and life is peaceful, seems almost impossible now. Two months ago, my life was easy, Adam and I alone on Saturdays and Sundays and every weekday when he works, I was here by myself and our evenings were about us, nothing else. Now, I have just Tuesday, Thursday, and Sunday, when life is as it was, the rest, are messed up, changed and noisy with people. How can just one hour from each day being changed, feel like a total day taken over?

I know that last week was exceptional, as I was really meeting and building the picture of my needs from the incontinence service and the district nurses, but even when they were here to do my enema this Monday, it felt like my entire day was reshaped. The enema on Friday hadn’t really worked. I did warn her that I didn’t think the contents of my bowels weren’t in reach. As she squeezed in the contents of what looked like a rather large bottle, all I felt was the tip of it, then 15 minutes later the liquid starting spill back onto the pad she had supplied for such an outcome. Neither of us had really thought it out either, as although my wheelchair was to hand, I had my trousers and knickers still around my ankles. Not exactly a good move when my body was racked by tremors and we had to somehow get to the loo. Trust me, it was a journey that I wouldn’t have managed without her assistance, otherwise, my white bedroom carpet wouldn’t be so white. It wasn’t as though my bowels cleared, they just took exception to having something enter it from the wrong direction.

Until late that afternoon, that was all that happened. The hours passed and nothing other than fast journeys for small amounts of liquid. I really shouldn’t have wished for action as that was what I got all day Saturday. Every time I moved, I had to go to the loo to clean myself up. I went from nothing happening, to a slow seepage of solid that I could do nothing about. On the good side, it was also Saturday that I started to feel pressure right across the top of my stomach, a pressure that I knew all too well. Late Sunday, it started to turn the corner and if life went to my bodies normal plan, that would have meant three more days of gentle build up, them two or three days of pain, before it would move again. Normal was interrupted on Monday, by enema number two, and the wonderful relief of all that future pain being interrupted by relief. As Murdoch used to say “I love it when a plan comes together!”. Because it cleared as far as possible, there was no follow-up leakage, no pain nothing, just my body doing what everyone else does with ease. Monday also found me on a good day. When the nurse arrived the tremors were quiet and I wasn’t normal, but about as close as I ever get. That meant that once she had me safely on the loo, without either my trousers of knickers, I told her to go. She could see clearly the difference in me and was happy to follow my wishes. I think she had been gone about twenty-five minutes when I started to wonder if my choice had been a wise one.

Somehow, I had to return to the bedroom, play about with the new mega towels she had delivered (quite honestly, if you added tags, it would fit a 6-month-old baby), get redressed, locked up the front door properly, and tidy up all the bits and pieces she left behind. That whole period from her ring the doorbell to then was about an hour and a quarter, and I didn’t have the tiniest drop of energy left, twenty-four hours on, and I’m still not revived. It appears that I somehow managed to empty, far more than just my bowels.

It’s Tuesday now, that means I am alone today, this is one of my peace days that I knew so well, but every second of it so far feels, like I am working towards finding the energy for tomorrow. The morning will find me once more with the nurse, and another enema, although I doubt there is much there after yesterday’s spectacular success. Tomorrow afternoon will see my carer here for my shower. How am I going to make my way through all that, and still be alive enough to enjoy my evening with Adam? A double whammy, that right now sounds like something that is going to leave me beyond wiped out, but I have no choice, this is the agreed plan, the way things are to be until we know exactly what works and what doesn’t, for my bowels. It goes without saying that I am more than hopeful that the space between each enema in time will be expanded.

It is bad enough that I feel so out of control of my body, but to throw in the sensation that my life has been taken over and planned by others, well, it’s left me just a little numb right now. Yesterday, the chemist arrived with yet another new drug, something else for me to swallow on the instructions of my doctor. It feels right now as though all I do is swallow and breath in medications, and when that fails, the nurses take over and insert it where I can’t. If anyone can think of any orifice they have missed, well please keep it to yourself. I always thought that our bodies were supposed to carry us through life and to bring us pleasure along the way, life now is all about medications, just to make it work at all. That pleasure piece, well, it’s still there when there is the time, just a little harder to find, and far less fun than I remember.

 

Please read my blog from 2 years ago today – 06/07/2014 – Some scares never heal

I feel that bit more under control today, not as lost and as though I am grasping at anything in my mind to keep me in line and still moving. It’s mad how something you knew, but didn’t want to hear, can really through you into the worst of muddles and make you just want to stop the world in it’s tracks for a while. I would even go as far as to say that my determination not to be beaten, is returning, not in the angry…..

 

Useless

Over the next few weeks, I’m going to have to find the strength to support Adam, it’s my turn, to step up and be strong. A couple of days ago, he had a phone call from his mother, she wanted to meet up with him after work for a coffee. There was nothing unusual about that, it’s something that happens every month or so. She lives a good 40 miles outside of Glasgow and as we don’t have a car, they don’t see each other as often as they did when she lived just down the road. As she was going to be in the city to see some friends she thought it was a good opportunity. Adam agreed, but told her that he wasn’t going to stay too long, as he wanted to be home for me, I told him to stop being so stupid and just spend some time with her. It doesn’t matter how often I tell him that, he always sees his place as with me, not with his family.

I had actually forgotten yesterday that he was meeting her. Nothing unusual there then, but when the time reached 6:15, I was wondering where he was. Then it clicked in and I settled myself to the fact he had taken my advice for once. I was though still a little surprised when 7 pm came and passed and he still wasn’t here. When the front door did open, within seconds I knew there was something not right as he was wound up and frenetic, the tone of his voice said that life had somehow changed. His mum had found out last week that she has breast cancer and will be having a mastectomy in a couple of weeks. She hadn’t found a lump or anything herself, but she had realised that since she moved from the city, she hadn’t had an appointment to go for breast screening. She had been to see her doctor about something else and mentioned it then. It was at the following appointment that they found two lumps in one of her breasts. The needle biopsy proved that one is cancerous and the second contains precancer tissue. There is no sign at all that it has spread, but to be on the safe side, they are going to perform a mastectomy, a simultaneous reconstruction, followed by chemo.

Clearly Adam has a lot to settle in his mind. As his mother pointed out and he knew inside, if it were serious, she would have been in the hospital at that moment, not sitting drinking coffee with him. I think Adam was as he always is when someone doesn’t let him in until something is a done deal, he is tied up inside, because he feels like he should have been there to support her through it. As I said to him, she wanted to know all the details, before telling anyone else, just to have it all settled in her own mind, so she knew just what was happening and what to say. I understand that fully, as I have to admit, I am very similar in that way. It was something that I also know Adam didn’t like when I was going through the diagnosis process, I went to all the appointments, except the final one, by myself. By the time I saw him a couple of hours later, I had my head around it and I was ready to support him though what they said, but he felt, he should have been supporting me. We all want to protect those we love and to make it as easy as possible for us all, it’s just some of us like to do it in our own way.

Because I know him, I also know that he will just tie himself up in knots, and there is nothing in this case that I can do about that. To make things worse, I’m still waiting for a fresh appointment for my breast screening, something that originally should have been done and dusted over six weeks ago. Which is something that I am sure has come up in his mind just as it did mine.

When things like this happen, it makes everyone feel useless, if you happen to be ill yourself, fighting your own battles, you feel it even more. What can I do, other than just be there, as my totally useless self? I can’t make him nice meals, run around being generally caring, all I can do is try and find the right words when they are needed. Even then, it is limited by a brain that won’t co-operate, that won’t give what is needed, not because I don’t want it to, but just because I can’t. I want so much to be able to give to them both, but I can’t, I can’t even find enough for myself. Even last night, all I wanted was to be there for him, so I tried to stay up just a little later than usual. My body wasn’t going to play, it just shut me down and as sleep was taking over, I had no choice other than to go to my bed. Useless, I couldn’t even manage to stay awake for him. Even right now, I’m just sat here, doing what I always do, because I can’t do anything else. If I were to go and just sit beside him, I know without a doubt, that once more sleep would take over, as I’ve been fighting with it all morning. I’m feeling nauseous and in pain, but that’s the life of someone with chronic illness, being a

If I were to go and just sit beside him, I know without a doubt, that once more sleep would take over, as I’ve been fighting with it all morning. Sitting doing nothing, would just be the final invitation for sleep to once more take over. I’m nauseous and in pain, the normal everyday life of someone with chronic illness, being a carer on top, is that step too far. If my body knows how to do one perfectly, then that’s how to be useless in every possible way. Despite that, whatever happens over the next couple of months, I somehow have to find the strength to at least get him through the tough points to come, and show him that no matter how useless I am, I can take care of myself while he cares for his mother, if, and only if, that’s what she wants. Thinking about it, that might be the biggest battle of all, helping him to feel settled, while she heals in whatever way, she feels she needs to.

 

Please read my blog from 2 years ago today – 03/04/2014 – Catch up

Everything online seems to have suddenly speeded up, after two years of slowly building it day by day, person by person, last month it all just sky rocketed starting with over 3000 new twitter followers bring me to my first goal of 50,000 now passed. Along with the always growing number of tweets I get daily, the interest in all my blogs has also made a huge jump and although none of this was my starting goal or intention, it feels really wonderful to know so many people are out there enjoying what I do daily. Those who are still here since the start, know that I quickly did set a purpose for all of it, no, not just giving me something to do, but far more importantly trying to pass on what I know about living with illness and surviving being housebound. It is also the wonderful…..

 

 

Charting progress

We all know what it is like when you get a silly idea into your head, and you just can’t shift it. I had one of those about a year ago. and it landed up with my purchasing an oxygen level monitor. I had it in my head, that my levels were dangerously low, and even worse, that every night, I was receiving increasing levels of brain damage. It always felt as though the change from vertical to horizontal, was making my breathing so much more difficult. At the time, I was waiting for an appointment at the chest clinic and the appointment, wasn’t come around quickly enough. As it turned out, firstly, the monitor didn’t actually arrive until a couple of days before the appointment, and secondly, the consultant told me that readings of 91% didn’t mean I was about to die, it could fall right into the 70’s and I would still live. I wouldn’t be energetic, but I’d live. Once I had had my mind put at rest, by the doctor, not the monitor, I put it to one side, grabbing it occasionally, but in the main, I forgot about it.

It actually feels like a long time since I last just sat here doing nothing, but with my oxygen monitor on. I used to do it occasionally, more because my eye was caught by it sitting beside my keyboard, than any other reason. In some ways, I probably should have used it more often and built a clear chart, that would make finding the abnormal easier, but I didn’t. So when over the last few days, when my abdomen has been creating pressure levels off my normal scale, I thought that I knew my oxygen levels would be low, but I didn’t have that much-needed chart, to be sure. I was getting reading from their highest at spikes of 93% right down to 86%, and one dip falling at 84%. All figures that I have seen before, just as I have seen all my differing heart rates, but I don’t remember a single one, with any certainty. It has made me realise, that although I have this tool, plus a few others, I have totally missed the opportunity, to build a picture of just what my lungs and heart are doing, or not doing.

When last summer I had a bout of pneumonia, I know that Adam was worried sick. I am quite sure that he was more worried about me, than I was, as he even took a week off work, as he wouldn’t or couldn’t leave me alone. The other day, Adam was looking for something in the coffee table draw, as he was scrabbling around in it’s overloaded contents, I spotted the instruction leaflets for my oxygen monitor. I thought he had thrown it away, after reading it. Clearly, he was still holding onto it, just in case, he has to put it on my hand and read the results, and clearly, it’s something that still worries him. I did think once before of keeping a chart just out of interest, but now I am wondering if the time has come, that not just for my curiosity, but for Adams future sanity, that such a chart, might just be a really simple and effective answer. I know from experience, especially from that dose of pneumonia, that I can tell him a million times, I’m fine, if his eyes can’t see that, he won’t settle. This might just be a way of giving him, some peace, and if adding on ten seconds to my morning meds routine, would do that alone, well it’s has to be worth it.

I think we, the chronically ill, often forget about what our partners see and what is going on in their heads. As I said, saying “I’m fine”, when “fine” is the one thing we never are, doesn’t mean anything to them. I have sought frequently for a way of convincing Adam, that I’m not going to keel over dead, in those five minutes it takes for him to go to the loo. It is one of my almost daily frustrations, especially at lunchtime, when he phones because the weather is too bad, for him to walk down the hill, to the house. Quite often our entire two-minute phone call is spent with me telling him, that I’m fine and trying to find a nice way of saying, I don’t need him to come home. There have also been numerous occasions when stopping him calling the doctor, has been just as hard. I have never really thought about it in depth, but that chart, might just in the future, be my answer. It also, might be the way of showing me, the pigheaded, “I’m never ill”, obstinate, single-minded, me, that, I actually do need to see a doctor, and now.

There is one fact that I can’t ignore and that is, that my health is getting worse, I’ve tried, trust me, I’ve tried. But it’s that very attitude, that has got me this far, but it is now the attitude, that makes Adams life harder. He knows all too well, that my left leg could be hanging off, with no more than a thread keeping it connected, and I would be asking him to fetch me a plaster. It works for me, but not for him. I have seen the worry on his face when I’m not doing too well, but it’s just my way to brush it off, as it’s my health and my problem. I guess that I had missed one important change, it’s no longer just my health, like everything else in my life, it’s now Adams as well. What I mean by that is. that I am now able to do less and less for myself, I have openly told Adam that I need help and why. He now monitors so much that I do and has taken over the rest of it, but I haven’t opened up a way for him to monitor just how well I am, other than to look at me. This would give him that opening, a way to be sure and to put his mind at rest, that nothing more serious is going on, that I’m keeping from him. After all, he doesn’t have x-ray vision.

 

Please read my blog from 2 years ago today – 25/02/2014 – I just don’t do

I really have to push myself today as I need a shower. I needed it yesterday as well but I just couldn’t find the strength inside me to get off my backside and sit in a small cubical. So OK it isn’t as simple as that, the big problem is the overall effort it takes and that horrid sensation of pin sharp water digging…..

 

 

 

 

 

A glint of silver

Although Adam is my carer, I do try to keep what he has to do to the minimum. I think the biggest job that I have had to hand over to him, is by far, the housework. For me, the person who did it for all the years before, well it was just a switching of roles. For Adam, I think he found the entire idea daunting, but he tried hard to reassure me, that everything would be taken care of. For a not just houseproud, but fussy person, this was rather hard to believe and even harder to sit and watch.

I had worked a full-time job, then came home to be a housewife, for many years. Both jobs were demanding and as a perfectionist, I could find no excuse for not being able to do both. As my health started to fade, I still pushed myself to be perfect. I can see now, that it was probably a stupid thing to have done, but I was at the time determined that no matter how I felt, everything had to go on, without any excuses. I was a tough act to follow, and worse still, I was still here. For Adam, it must have been a total nightmare in the first couple of years, as although I did my best to bite my tongue, I couldn’t help interfering. In all honesty, I was trying to help. I had many years of learning the quickest and most effective way or creating perfection, without the work that it appeared to take. Adam, though, was and is, determined to do everything his way. It still takes him half a day, to clean the bathroom. I used to do it in an hour, with a fifteen-minute coffee break included. He hasn’t learned from me, but after several years, I have learned to just leave him alone to just do it.

Years ago, I would get up at 4 am, not just to get ready for work, which took longer for every year as I got iller, but so I had two hours, in which I could do all the daily cleaning, other than the hovering, that I did when I got home. It was my way, of being sure we could be together each night. I had the freedom of starting work at 7 am and finishing at three, then home to hoover and take a nap. No matter what, that, will never be Adams way. He will never be the houseproud person I was, but he does what he believes needs doing, and that’s another reason, why I love my daughter coming to visit, as a cleaning frenzy ensues. To be honest, these days, I would rather the house wasn’t perfect, if, it means we can spend time together. It’s another of those values that you find changes when life goes off the rails.

Housework wasn’t the only thing I slowly became too much for me, cooking became a chore. I once had loved it so much, that I could see no issue in spending all my free time, over two days, making something that would be eaten in ten minutes. At first, it was my energy levels that got in my way of our gastronomic feasts. Food became simpler and more basic, but we were fed. Then my health stopped me eating. At first it was just the choking, then it would get stuck and finally, I felt sick all the time. Being old fashioned, I still cooked for Adam, but he wasn’t having it. If I wasn’t eating, he wasn’t going to let me cook for him, he could do that for himself. Even when I did eventually manage to eat again, it wasn’t much and cooking had become a danger zone for me. I couldn’t cook and I definitely couldn’t wash the dishes, if we wanted them in one piece, but I could reduce that chore by more than half. The dishwasher entered our lives for the very first time.

I know Adam hates the househusband side of his new role. He quietly ignores the dust on high shelves, or in rooms where a visitor wouldn’t be. Spring-cleaning isn’t a joy our home has even heard of, for over 9 years. I was the last person to have the total pleasure of washed the walls and ceilings, trust me, it was a twice a year job that yielded great satisfaction. Yet, he won’t even entertain the thought. To be honest, when I think back to the work it took to keep a home in the 70’s when I married for the first time, modern housework, including deep cleaning, is a doddle. We, at least, have a washing machine, tumble dryer, and a vacuum cleaner, I had none of them. Not until we scraped together the money to buy a twin-tube machine, to help with Teressa’s nappies, but, not until after she was actually born. Until then, I did all, and I do mean all the washing by hand. This, though, is 2016 and we have gadgets galore, but still Adams biggest dream is to employ someone, to do it all for him.

When I was first diagnosed and Adam said that he was going to take over everything as it was needed, my vision of our life now, was very different from its reality. It wasn’t that I actually thought about it at all, it seemed to me to be a natural transition. He would take over my role in the identical way, that I did everything. It didn’t even occur to me that there was another way of doing things, as I just did what had to be done. I wasn’t being fussy, difficult or even dictatorial, yes, I do now realise, that it could look that way, but that had nothing to do with it. I simply couldn’t see why anyone would want to do anything differently, or that there really was a different way to do it. Like everything else in life, if you want a clean house and good meals, well someone has to do it, and I was no longer able to. He told me he was happy to take over. He seemed oddly content to watch things drift into what I could only see as a mess, it didn’t make sense and it took me a long time to get used to it.

When it comes to the daily details of life, we are clearly chalk and cheese, in our attitude. I never thought that I would be content to sit in a room where I could see a speck of dust, yet I am. I never thought that I would ever permit such things as fish fingers of tins of anything, cross my threshold, but I do. Mind you, I still draw the line at eating them. These days, I am content with the way things were, yes, I wish we had the money to employ someone, so he didn’t have to do even what he does, but right now, we can’t.

Accepting and adjusting to our health, isn’t just about what our health physically and mentally, means to us. For me, I honestly believe it could cause me all the pain in the world and rip my brain even further apart, and that, would still be easier to adjust to, than all the things in my life I can’t do. The medical conditions we have to live with are just the start. All this, is probably the biggest missing part, from every description of any condition, I have ever heard or read. The biggest thing that it takes from us, are the everyday details of our life. The things we do without thought, the things that fill our time, they are our biggest loss. When I occasionally get picky about things, when I try to advise or attempt to correct, I’m hurting. Watching Adam do what I once did with ease, hurts. Every single time a duster appears or I can hear the hoover, it hurts. It should be me doing that, not sitting here like a useless piece of discarded rubbish. Seeing dust, hurts, not because it’s there, but because I can’t remove it and it’s friends. Every dirty glass or unwashed pot that can’t go in the dishwasher and is waiting to be washed, hurts. You name it, if it once wasn’t that way when I was healthy, it hurts like hell.

In the last few months, since I have felt myself slipping, that pain oddly has become easier. I don’t fully understand it, but I no longer hurt so much. It is as though I have reached a point where I no longer fret, my mind has closed the external out, as it has too much to deal with inside. As they say, every cloud has a silver lining, I think, I found this one.

 

Please read my blog from 2 years ago today – 19/02/2014 – Who copes

Sometimes I sit and wonder just what is the worst part of what is happening to me, or that has already happened, I try really hard to find an answer, but I never find one. I can find and name a list umpteen times…..