Monthly Archives: July 2016

Independence reborn

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We have a working shower!! I know that may not sound like much to you, but after not having a shower for the past 10 days, it means the world to me, at this second. I know that I only shower twice a week normally, but I really missed sitting there naked and letting the water run over me. One of my carers are due here this afternoon and she can’t arrive soon enough for me. It turned out that it was a fault in the shower, not poor workmanship on behalf of Adams pal who fitted it for us. He was really not happy about going to him and asked for what we had been warned would be £86 if it were his fault. In some ways, it does make me think twice about using any friend, even when qualified, to do work for us, if it goes wrong, I think Adam would just bite the bullet, rather than ask for the money back.

I have to say that the one thing I am looking forward to more than anything, is washing my hair. I have been using a dry shampoo all last week, but although my hair doesn’t look too bad, I just hate the way that it feels. I don’t even know how to describe it, despite repeatedly brushing it, it still feels sort of thick and full of product. Mind you, I don’t normally put anything in my hair, other than dye, shampoo, and conditioner, so I’m not used to the feel of anything else, other than clean hair. Which reminds me, I really do have to dye my hair, the number of grays, are starting to get beyond a joke. Vanity isn’t one of the things that my health hasn’t removed. There are still odd things like hair, skin, and teeth, that bother me as much as they ever did. Old age really is a pain all of its own.

This is the last time that I will see the carers who have been taking care of me for the past six weeks. My assessment period officially ends today, and Karen, the lady who organises it all will be here to see Adam and me on Wednesday morning, to discuss where we go from here. I’m really sad to see the girl who is here today go, as she is a total sweetie, but she is one of the qualified assessors and it is more an everyday carer that I will have in the future. Which of course, means that I go right back to the beginning, and I will be teaching a new pair just what I need and exactly how to do it. I really don’t like the idea as I have just become comfortable with the pair that I have. For me, it’s hard work making those connections, especially as before they arrived, I had very much been on my own. They have changed my life dramatically over a very short period of time, which I am glad of, but starting again is daunting.

I know that I have actually adapted far better than I thought I would. I honestly thought that I was going to find it far harder, as I was so used to my splendid isolation, maybe too used to it. So saying I’m going to miss one of them, is a total flip in myself. I no longer want to throw them out of the house and actually look forward to seeing them, and not just because I get a shower. It is, though, one of the beauties of being human, we are far more adaptable than we think we are. These last few weeks, not just with the carers, but including the district nurses, have oddly made me feel as though I am actually back in control of my life. I thought that I was losing my independence, but I haven’t, oddly they have given it back to me.

I know that is the last thing I and probably you expected to hear. How can people coming into your home, to wash you, or give you enema’s, possibly do anything other than take your independence away from you? Well, it can. I used to spend hours trying to do these things alone, trying to work out ways to wash, ways to do it safely and puzzling over what to do for my bowels. My life was tied up in those two small things. They were relentless questions, a dilemma that dominated everything else. Now, they are small interruptions and once taken care of, I have my freedom to do the thing I want, on my own, without having to even think about them. They are now their problems. I let them work on them, think about them and work out how to get past the problems without a second thought from me. I can go about my life, knowing I’m clean, protected and that I have medical assistance, who will come to my home if I need them. That to me is a new freedom, a new independence, that I haven’t had for years.

There is one thing that I have learned from this whole experience, you have to plan it to suit you. I have two different groups of people coming here twice a week. Originally, the thinking was to have the Nurses here three times a week, but that was too often for me, not just medically, but mentally. After the fortnight of trying to work the two together, I rapidly discovered that I don’t have the energy to manage both in one day. Even with the Nurse here in the morning and carer in the afternoon, it was too much for me. Equally, having someone here five out of seven days, was too much. I felt as though my life was dominated by it and I had no space in it for me, or to just spend with Adam. I hit on the idea of the Nurse visiting on Monday and Thursday, as I already had the carers visiting on Wednesday and Saturday. This pattern allows for life to go on and for me to recover before the next round. It is now three full weeks that we have been working this way and it works. I still have my life, the one I’ve been living for the past 7 years, I have lost the problems that were driving me mad and slowly, I have begun to feel good about it all. If their presence in your life, isn’t working for you, it is never going to make you feel you’re still independent, just trapped.

Clearly, I am finding this whole business completely the opposite of what I expected and the more it is becoming part of my life, the happier I am with the whole thing. If it were really needed, I would now be happy to accept any other help. How I would fit it in, right now I’m not sure, but I know without a single thought, I wouldn’t be frightened by it, as I was just two months ago. If you don’t believe me, just go back six weeks and read your way forward, the change you will see is dramatic. So don’t be scared if you too need assistance to live, OK I know you will, we all are, but try to remember how I have found it and give it a go. It isn’t the end of the world, it’s just a bit of change to it and when it works well, it gives you a freedom you won’t expect.

 

Please read my blog from 2 years ago today – 31/072014 – Staying sain

Last night we were just watching TV and talking as we always do and at this second I don’t remember how we got onto the subject of my blog, but we did. Adam said something so true that for once he looked as though he was about to burst into tears. I’ve never understood why painful things when said, make people do that, but I owned up to the other day, words appear and the truth of them…..

Mentally unfair

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When you are by yourself, as I am, day in day out, it is incredibly easy to take things to heart. What I mean by that, is that when someone says something perfectly innocently, it is heard or read in a totally incorrect way. When you send as many tweets as I do, or write as much, it’s not really surprising that from time to time, I completely innocently upset someone. It is even more likely to happen when your main audience is those with chronic illness, including those isolated as I am, by being housebound. When you are feeling down, are in a lot of pain or feeling more alone than normal, well we all take things in ways we normally wouldn’t. It used to be something I did a lot until I started to realise that I was just being precious. Then there are the times when I have suddenly found myself face to face with those I have upset, well, as face to face as the internet allows, and trying my best to sort the whole terrible mess out and often making it worse. The result is that now you wouldn’t believe the care that I try to take when I write anything, beyond a, “thank you” or a “(((hug)))”.

It is amazing just how much our moods are affected by what is happening to us at that second. As I said, I have frequently thought that someone was being either really nasty or far too personal for comfort. If you are like me, someone who has only come to social media since I became unable to work, understanding just how 140 characters, (as on my pet favourite Twitter only allows) can skew the real meaning with ease, takes time. Reading what isn’t there, is beyond easy. In the first year, I lost count of the times I found myself sitting here feeling wounded, but for some reason, I’m not the sort of person who makes a fuss about it. I just sit here quietly hurting, and actually making myself feel far worse than I did before I read it. It is easy to say, just take it with a pinch of salt, but when your body is racked with pain and you’re looking for an escape, not persecution, it’s sometimes hard.

Our bodies have so much to answer for, being in chronic pain is something that you get used to, but when you’re having a bad day, it’s affects us in ways we don’t expect. Without a doubt, I know that I, and probably others, wouldn’t bat an eyelid at any of those silly things that turn into that straw that breaks us. I’m using social media as it’s an example, as it one that I know for sure, we have in common. It could just as easily have been something on TV, or that our partners have said, whatever it is, I’m sure you can all sight your own examples. It’s easy for us to understand what is happening when we look back, but others aren’t always that patient. Adam has told me that he has often dismissed all I was saying and how I was doing so, because, he knew that that day, I was in pain, although I was totally unaware of my error myself. Those online can’t see me, don’t know me, and some often don’t care. So like so many things in our lives, it is us who have to take the care, choose our words, and our subjects, with others foremost in our minds. Our lives are so complex and as much as we like being around people, they don’t half make our lives harder.

Chronic illness steals so much from us, and for some of us, our patience is just one of them. I have to admit that I have over the years went through spells of hiding. I know that sounds odd to some, but when you’re struggling and you know that you have recently upset a couple of people, even when for the life of you, you couldn’t see how, it just feels easier to avoid them all. If I have hidden away, I know for a fact, that that means there will be others out there who have done just the same. If blogging has taught me one thing, whatever we have done, someone else out there will have done it as well. The one thing none of us should be doing is hiding. People don’t understand what is going on in our heads. They see our illnesses as physical and never take into account that the mental impacts can be huge. Just because most of the time we handle things well, doesn’t mean that we don’t have our off days. Every spasm, every time that we find ourselves with our arms too tired to push that wheelchair another inch, our mental state changes. It affects what we say and how we say it, and because we are so tied up with ourselves, we don’t always notice it and we can’t tell you, we don’t mean it.

We are tested in ways that the able-bodied and healthy will never understand. What our bodies do to our brains, especially our emotions, is something I know I didn’t understand, until I found myself here. It is only those closest to us who see it, feel it and know how to handle it. Our lives are nothing like they once were and this is just yet another example of how screwed up it becomes. So if I do at any time accidently hurt you, I’m sorry, and if you do me, well, I promise to understand and just brush it away.

Please read my blog from 2 years ago today – 29/07/2014 – Unable to stop

I am in one of those “I just can’t be bothered moods”, not normal for me I must say. In fact, I don’t remember when I last had one, I just want to do nothing, not here online or anywhere else, I just want to curl up and disappear for the rest of the day and worse still, I don’t know why. I hate this, I know some……

A life changing possibility

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Sunday turned into a trip into the past, not the distant and mainly forgotten, but the recent and as it turned out, equally forgotten. I mentioned in my last post that I was once more in pain from my guts. Having had two failed enema’s the week before, my body had done what it finds so easy, it had me once more reaching for the morphine tablets. I hadn’t realised until the evening that I hadn’t once reached for a booster tablet because of my stomach for over week, then it all began again. Just as the improvement in my appetite had taken until that afternoon to actual occur to me, I had somehow failed to be even aware of not once feeling sick or having the thought of taking an anti-nausea pill either. I have noticed this oddity before, somehow I don’t notice the improvements, but I certainly notice when they disappear. I have to admit that I find that really peculiar. Surely when you have been longing for four years to be rid of the pain, when it did actually go, I surely should have been overjoyed. In fact, I didn’t even notice it happening, I just settled into my new normal and got on with life.

By the time I went to bed on Sunday, I was once more in pain over my left kidney and I hadn’t been able to empty my bladder since 5pm that evening, not even a dribble. My bowels were so overfull, that they were causing me every symptom I have ever had from them, all in just a few hours. I was up twice during the night, desperate to have a pee but I failed miserably until my fourth awakening just after 4 am when the first trickles managed to escape, followed by an intermittent flow that lasted just minutes. I may not have felt relieved in the way that I wished, but my mind at least found a little rest and going back to sleep was the easiest of my attempts that night.

I quite honestly don’t remember been so eager to welcome the nurses into my home as I was today, and when I told them what the previous 24 hours had been like, they told me that I should have phoned them and they would have come straight out to see me. There is little relief in finding out you didn’t need to wait for something when it was there waiting for you. At least I know for the future, as I doubt that this isn’t going to be the only time that this will happen. Despite having what felt like ridding myself of a huge quantity just after she left, I am already once again in pain. I now know where all the food I ate has been going, nowhere, just backing itself up and waiting to move forwards, once there was space and my muscles could be bothered to work. The nurses are due back here on Thursday, so right now I am going to wait and see what happens.

The rest of Monday passed with nothing of note other than another telephone engineer telling me the fault in our broadband is outside the house and once more was unable to fix it. They haven’t given up, and are still working on it, just not that evening. Throughout the evening I blamed my mood on that news, but when I woke again still tetchy and with a huge desire to snap someone’s head off, I started thinking about it in more depth. Without a doubt, I’m feeling this way because of once more being caught in this cycle of pain and internal pressure. It is like I have stepped back in time to four weeks ago. Finding my smile is actually work, rather than its spontaneity of recent days. It’s amazing just how badly one thing can affect everything about you. It’s not as though all the problems of the rest of me went away as well, that would have been hoping for too much, but it does show just how badly not being able to go to the loo, can affect our entire selves.

I know in reality we are just in the early days of getting this sorted out, and the answers are still sketchy, but finding myself back here, has opened my eyes to the choices that lie ahead of me. If the enema worked as we all expect them to, that would be wonderful, but that is only one of three outcomes I have had so far. The second is no real response that day, other than what I call the dried plug being removed, followed by a constant and steady slow loss of soft faeces and I do mean constant. It is unpleasant but does get rid of it, I could actually live with a balance between that and a proper response, but working out how to achieve either, is difficult. I know it’s about what I am comfortable with, but I have to say that a stoma, now doesn’t sound so terrible. It would mean no enemas and no more fails leading to pain. I’m not there yet, but it has moved up on the list of possibilities, from no way, not ever, to a real possibility. I do though need to give this a really good shot, but how long, is long enough to know for sure? It is a really big decision to make but until the last few weeks, I really hadn’t been aware of just how badly it is affecting me. I have for a long time been putting the blame on many of the side symptoms to completely different sources. Getting this one thing fixed, could really change my life and that’s not an exaggeration.

 

Please read my blog from 2 years ago today – 27/07/2014 – Back to front

Everything is wrong today, all the things that are normally wrong, some are amplified others normal, but on top, there seems to be a layer that is more wrong than I have felt it for a while. I noticed within minutes of getting up that my muscles are once again playing the exploding game, but it was once again my left side that screamed the loudest and had found a pain to travel down the…..

Banished demons

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I haven’t given an update recently on how things are going with my new army of carers. Much to my surprise, I have to admit that it’s not working out badly. It’s six weeks now that I have had my army of ladies here to wash me, and I have to admit, that I am really enjoying being clean. You don’t realise until someone else helps you, just how much of your body hasn’t had a really good scrub for far too long. It’s all very well letting the water pass over you, but the sensation of a someone giving your back a real good scrub can be totally sublime. I am finding it far easier to be around others as the days have clocked up. I have to admit that the first couple of days, there was a huge amount of bravado. I was flinging my clothes off and acting as though it was perfectly normal to find myself totally naked in front of a stranger. The truth was that I was far from comfortable and quite honestly, I wanted them to just get out of my home. This week, with the temperatures soaring, has meant that I was actually looking forward to the bell ringing and the promise of getting rid of that feeling, that my clothes were stuck to me. Which even I admit is quite a turnaround.

One of the problems of being housebound is that you slowly forget how to act around people. You become set in your ways and a having to allow others to intrude into your world is hard. There is very much a feeling that they are here to upset you, not help you. I guess that is why, for the first six weeks they send in the rehab carers. They normally go out to help those who have just come out of the hospital after a long stay, settle back into normal life. They spend their time trying to make them care for themselves, with all the daily things that people have to do. That can go from cooking to bathing and onwards, just to be sure that they can manage on their own. I too had the rehab carers and I have to admit that I needed them. They coaxed me out of that shell I had built around myself, as I taught them, just what help I needed. On both sides, it is clear that I can’t manage on my own, they aren’t going to be able to teach me any tricks so I could shower alone, as there aren’t any, but they have taught me how to be a human again, and to be not so precious, about what is mine and how I do things. I thought that having strangers around me, was going to be the biggest hurdle, now, well I don’t really mind which one turns up so much, as how much I need to teach them. I still find having to tell people the same thing as I told the one before, really irritating, but I’m learning not to bite.

I have to admit that I found I went through pretty much the same with the district nurses. They have only been here for about three weeks, and yes, they are here for a very different reason, more to help my body, than to help me. I doubt that I will even find it easy to lie down on my bed naked and let them pump in an enema, it’s not exactly the most elegant process and never will be. The fact that they don’t just do the work and leave me lying there, does make it far more bearable. I’m not sure why, but them taking me to the toilet before they go, makes it feel more normal, but it does, as does the fact that they all take their time to chat with me, from when they arrive, until they go. As for the actual results, well that’s not going so well. I did have high hopes at first as each one worked, sometimes not in the way I expected, but my bowels being emptied was always achieved. That was until last week, the last two of them have failed totally. They are due here again tomorrow, which I have to say, I’m quite pleased about.

Just having people here has really changed the way that I feel, and that I act. Simple things like making sure that I am dressed better than I was a few weeks ago, that I have my day organised around their being here, rather than around what I want to do. It changes the way that you think and the way that you feel in ways I wouldn’t have expected. There have been so many changes, most subtle and most that I doubt even Adam has noticed, but I do feel really different about my daily life. One of the things that I have noticed is that I am now eating more. Food has suddenly become something I am actually interested in again. To the point, that last week, Adam and I actually had a meal together, something that we haven’t done for years, others than on special occasions. It doesn’t take a genius to work that one out. With my body no longer blocked up all the time, I actually have somewhere I can put food, rather than it just causing me more and more pain with every mouthful. I hadn’t really made the connection at first, then this weekend, I suddenly found that the food I was preparing, I wasn’t so keen again to eat. Then this morning, I woke again to the feeling I know all too well, there was the pressure right across the top of my abdomen and the pain was building. As I said the connection is clear.

On the whole, I have to say that I am now glad that I asked for help. Sometimes it may take a lot for us to reach out, and I guess what I have learned is that maybe, just maybe we should do so far sooner, rather than putting on the act of “I can deal with anything”, when the truth is, we can’t. It’s all well and good being strong and wanting to hold on tightly to our dignity and our independence, but when the time comes that you know in your heart you need help, you just have to ask, as it is there and they’re not all monsters and demons.

 

Please read my blog from 2 years ago today – 25/07/2014  – The learning path

My entire body seems to be on fire today, something has triggered a mass eruption of nerve signals. I noticed it within a few minutes of waking up, I had gone through my normal half awake wonder around, going to the loo, fetching a glass of coke and lighting my first cigarette of the day, when bang, the upper third…..

From the forgotten

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I feel like hanging out flags and setting off some fireworks. Today, after 2 months of fighting with them, Talk Talk, the suppliers of my broadband service, have agreed that the problems we’ve been having, isn’t caused by anything in our home. That is, despite my replacing all the internal wiring, the router, and the telephones on their instructions. When their engineer arrived at the house within a minute, he located the issue as outside the house. All they have to do now is fix it and then I’m going to try and make them pay for the equipment that I didn’t need to buy, and all the stress and upheaval that they caused in my life. I know that that will be an even bigger battle, but at least the first step has been taken and I feel great about it. There really isn’t anything worse than feeling like you are being treated like both an idiot and a liar, when you know perfectly well, that you are neither.

Even if you are fit and healthy, the way some of these companies treat their customers is abominable. On the odd occasion, that I got past the person who answered my call, and actually spoke to a manager, I very much got the feeling that I was being patted on the head like a two-year-old. I told them on several occasions that I was disabled, housebound and needed both my phone and the internet as they are my only connection to the outside world, they still didn’t seem to take it as any more serious than an inconvenience. The problem with these huge companies is they don’t care about those who are making them money, we are nothing but a number and if they lose you, they will replace you with someone else. I haven’t told them yet, but the instance that this is all fixed to my satisfaction, I will be leaving, as soon as I can. I just wish that there was some way of making them feel the pain that they have been causing me, but that is impossible. I quite honestly believe that they have been behind much of the recent downturn in my health. I have been left several times sitting here in tears and with stress levels off the scale, while they continue on happily with their own little lives.

To me, this is yet another hole in the disability rights. Every company has to now supply access to their buildings for the disabled, they also have to employ a certain number of disabled people, but once past those physical situations, there is nothing that says we have the right to service appropriate to our conditions. As someone who is housebound, it goes without saying that my telephone and broadband service are essential. Without them, I have no contact with the outside world, there for, it is essential to my health. Right now, both my gas and electricity supply is protected, even if I didn’t pay the bill, they can’t cut the supply. My telephone company can do whatever it wants, how is that right?

Recently, here in the UK, there has been a drive for staff to be trained to be able to supply service for people with dementia. I don’t have dementia, but I can get just as confused and just as agitated as someone who does, due to the brain damage that I have. That drive is focused on shop and bank staff, there is nothing similar when it comes to their call centers, which these days is most people’s point of contact. I wouldn’t have the slightest qualm in having it written on my account that I have with every company I have dealings with, stating that I have a disability that needs specialist help on the phone. I have said many times before that I have huge issues making phone calls, but it came down to my having to make the calls to Talk Talk for several reasons and despite my telling them, over and over that I have a disability, on some occasions, I have even said it affects my brain, but nothing changed, nothing happened until I broke down in tears. It is so wrong that we are treated this way. Businesses have to change, they have to, as if they haven’t noticed, there is a huge aging population out there, many of whom will in time need specialist attention when dealing with them. The more elderly there are, the more people with chronic illnesses there will be, it’s a simple fact. If companies want our money, they need to shape up.

Sorry for going off on a rant, but as you can probably tell, this whole thing has really got to me, and it’s not even over. Unfortunately, you have to have your life turned upside down before you start to see the wrong in the world. Even worse than that, once you can, you’re not in any condition to put up the fight to get these things changed. Sometimes, I think the outside world knows that full well, in fact, they don’t just know it, they bank on it. We are the forgotten, the ignored and the put upon, simply for those reasons, and like everything else in chronic illness, it simply isn’t fair.

 

Please read my blog from 2 years ago today – 23/07/2014 – Pulling things back together

Calm and ready to go, well that is the story I am telling myself today, calm being the most important part of it all. After yesterday’s free fall into confusion, panic, isolation, agitation and pure hell, today has to be a better one and the best way I know of achieving that is to stay calm, to hold on to the normality of my day and just work my way through from now to bed time without letting go of total…..