Banished demons

Posted on July 25, 2016 by livinginalimitedword

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…..

Back in action

Posted on May 9, 2016 by livinginalimitedword

One of these weekends, I know I am going to kill Adam. It doesn’t matter how much I love him, but if you heard the noise he makes while he sleeps on the settee, I’m sure that most people would forgive me if I did. Honestly, he has to be right up there, in the top ten of snorers on the planet. I just don’t get it either, as he isn’t wildly overweight or any of the other things that they say is behind it, but the noise is unbelievable. I have to admit that most mornings I just block it out, but there are mornings like last Saturday when every single snore felt as though it was vibrating through me, and that is something you can’t block. I guess it just goes to prove, that it doesn’t matter how much you love someone, sometime’s, they can do the most innocent things, but it pushes you right to the edge.

I know that I have spoken to Adam about it in the past, and he has always said no, but I am sure that there are things about my health that must really get to him, after all, he is human. He would have to be superhuman to not even once, get exasperated by the fact that he has to do so much for me, and our home. There are so many people who can’t even deal with being asked to fetch a coffee, so for him or any partner, to have not once thought “Not again”, would amaze me. If I can get exasperated by his daytime snoring, I can’t accept that not once he hasn’t thought, “Not just now!”. I know without a doubt that some people aren’t as good as Adam is at hiding it, but even he lets out the odd sigh, or noise that tells me, he is not best happy. It is those human factors, the sounds, the body language, and expressions that I believe, is the source of people feeling they are a burden on their family, or are when more extreme are behind so many out there feeling that they are alone, or that their families just don’t understand, or believe, what is happening to them.

I have come across many who have said such things, I even have personal experience of it. Although I wasn’t diagnosed, and at that point the doctors couldn’t find the reason for how I felt, I knew that there was something wrong. I had, of course, spoke to my first husband about how I was feeling. His reaction didn’t really surprise me, as he wasn’t exactly the most caring of people, but he clearly didn’t believe me. I now guess that he was looking at me, couldn’t see anything wrong and therefore didn’t believe I was ill. He was very much that sort of person. If I wasn’t lying on the floor unable to move, well, I was well enough to cook dinner at least. Even my mother’s reaction was suck it up and get on with it. So yes, I really do understand those who are struggling alone, despite being surrounded by people. The fact that the majority of chronic illnesses are invisible makes having one, far harder than it should be. The people we expect understanding from is our families, not getting it, is worse than any doctor saying, they can’t find anything wrong. My health had nothing to do with my ending my first marriage, but there is one thing that I am now sure of, I would rather be alone right now, than live with someone who just doesn’t understand, no matter how hard that would be.

No matter how much you love someone, and no matter how long you have been together, being ill strains every relationship. I know that I am incredibly lucky to have Adam, and no matter what he says, I do worry about the future. Five years ago, all Adam had to do for me was the housework. As every year has passed that has grown into having to do everything in the house, and looking after me more and more as well. In the last year, there has hardly been a month that has passed where something new hasn’t been added to the list of support and help that I need. When he is here at home, there isn’t an hour now passes, that Adam isn’t doing something for me, or doing something that I once did. Right now, he is doing it maybe not always with a smile on his face, as he isn’t like me, someone who smiles with ease, but at least not with a frown. Yet I don’t even need to ask if we could afford to have someone else here doing it all for him, that he wouldn’t jump at the opportunity. It isn’t just that he would like more leisure time, I know that he would just like the chance of having some time off.

For the first time ever, I am beginning to feel like I am, not a burden, that isn’t the right word, but that I am taking up just too much of his time. I know that he is happy to do it all, but I just feel that it is starting to become unreasonable for me to ask him to do anymore, on top. I don’t know what the next thing will be, what part of me will fall apart and need his help, but whatever it is, I honestly think that we are not far off the day when no matter who we each feel about it, we will need help from social services. I know a few months ago I spoke about finding out what they could offer, but everything went on hold, and still is, because I wanted to do everything in a set order I had in my head. I wanted to work backwards, starting with my funeral. As you know, if you’ve been reading for awhile, that all hit a stop when I discovered that my funeral plot, wasn’t in my name. That problem still hasn’t been fixed. My daughter has just started a new job, that means she has a lot of traveling and is in fact, right now she’s just returned from Poland. Finding the time to visit her father on my accord, quite simply hasn’t appeared yet. She will, but waiting for it now seems unreasonable.

Life, though, has done what it often does, it is pushing its way forward and forcing me to change everything. I really think that the time has come, when I have to stop waiting and start on the other things on that list, before whatever that next thing is, arrives. I just don’t feel that it is fair, no matter what Adam might say, to ask any more of him, if there is another answer. Where I start, as always I don’t know, but I have to start and stop just sitting here hoping that my health will remain level, when, it so clearly has no intention to. I think this week, I need to look at that list and see what else I can do now before I’m not able to.

Please read my blog from 2 years ago today – 09/05/2014 – Injuring my ego

I have managed to injure my right ankle. The stupid thing is I don’t remember anything happening that could have caused it as it feels as though I have pulled the tendons just behind the ankle joint that run up from your heel to a couple of inches above the ankle joint. It is the sort of injury that you don’t need to move to be able to feel it, I spent all day yesterday limping and woke again this morning aware of the pain before I even put any weight on it. I know I took a fall last week, but since then I have had a couple of wobbles but nothing severe enough to damage another part of me.

One of the big dangers that you learn to live with isn’t just what your condition is doing, but all the silly little injuries that you manage to do to yourself along the way. For years, I have found really deep bruises all over…..

That longing to touch

Posted on May 4, 2016 by livinginalimitedword

We had a bank holiday this week, which meant that Adam was at home, rather than working. It’s totally thrown me, I don’t know how many times I have checked what day it is today, but I’m still lost. Adam spent it cooking my psyllium pancakes and worrying about his mother as it’s today that she will be having her mastectomy. He said that he’s been having bad headaches over the last week, not surprising really. He is stressed, far more stressed than normal. I went into the kitchen while he was stood there at the cooker and all I wanted to do was stand up and give him a cuddle, but I couldn’t. It wasn’t because he was visibly upset, it was simply because a few years ago, it was the sort of thing I would have just done. I would have just stood behind him and wrapped my arms around him, and simply held on while he continued what he was doing, or he turned around to face me. All those simple, little, spontaneous acts are gone. It’s not quite the same wheeling up behind him, pinning him with my chair, and finding my arms in line with his hips. Somehow, it just doesn’t work any longer. I used to love spontaneity, but when you have to think through every tiny action, consider how your wheels are going to get in the way, how much energy you have, what pain it might all cause and if you have the physical strength left, destroyed that long ago.

It’s rare now that we have a true cuddle. Well if you think about it for a few minutes, you would see why. It’s nothing to do with not loving each other, and everything to do with this stupid body of mine. I have two positions, sat down, or laid flat on my back. If you’re stood up and faced with someone who is sitting, how do you cuddle them? Harder still, how do I cuddle him? Whatever you try, it will be brief and not really comfortable, nothing like a true cuddle. I am now after many years of being ill, well acquainted with his stomach, not exactly the part I would prefer to see during our daily cuddles. If he comes down to my level, as he does every night to say “good night”, it requires a lot of strength in his quads, something that’s not always there for long. Even when we sit together on the settee, cuddling is hard work. I can’t sit still for long, I am always having to change position, either to breathe better or to relieve the pain. I’m never still for more than a couple of minutes, so it just doesn’t work. Adam is as always, scared of causing me pain, and takes it personally when I suddenly pull away or move him due to the pain. It’s not him, just me my body screaming it can’t take any more. Lying down isn’t any better. I can’t roll over, not even onto my side. I am stuck there flat on my back, and yes, he can cuddle me, but I can’t really cuddle him in return. All I can do is lie there, feeling like a spare part in life. Even if he helped to bring me onto my side, I couldn’t stay there for more than a few seconds, as the pain just builds and builds, until I flop once more onto my back.

Every single element of our lives has changed. Even at times like now, when all I want to do is try to take some of his pain away, mine gets in the way. All I could do yesterday was to talk, to try and use words to reassure and to sooth. Yes, we share the odd touch, reach out to each other in passing, but none of it is even close to the way we once were. It is at times like this that I get angry with my health. I feel so useless, so unable to do anything. He has taken tomorrow off work so that he can spend the day at the hospital with her, I will be stuck here, feeling beyond useless. I should be there for him and for her, but once again, my health wins. When it comes down to it, I am a head on a body that doesn’t work in anyway that is of use to anyone, not even me a lot of the time. I get angry at what has been taken away, from not just me, but from everyone that I care for. Acceptance doesn’t help them, and I know because I am human, that the logic that says, “I can’t do anything else”, doesn’t fill that space I once occupied. Tomorrow, no matter what the operation found or didn’t, there will be times when Adam will have that need to have my arms around him, and I, of course, I won’t be there.

In many ways, I am the living dead. To the outside world, I am gone, it is only those who come to me, know that I am alive to at all. To most, I am gone, just as completely as if I were dead, to others, I am the ghost, that empty space, that no matter how much I want to be filling it, will always be empty. Even to the few who know I am still alive, I am the body that no one quite knows how to touch, how to be with and even how to show love to. Thier not alone, as my once spontaneous nature, who didn’t care what others thought, would hug, hold hands with and be affectionate to those that I loved, no longer even knows where to start.

Being the owner of a physical form like mine, is a trial for all those around me, and even for many who aren’t. It is a position in this world that is hard to come to terms with, but can still be far better than most imagine. Love is the most amazing creature, as believe me, as an invisible force in this world, I have learned to understand it, better than many. I might have been forced to not be like others, but I’ve found many ways of still showing my love, of still being part of and of feeling it in return. The physical aspects of love, those moments where we pass it from one to another, don’t have to be physical at all. I don’t feel any less loved by Adam than I did on the day we married, and by refusing to remain invisible, by building a network of friends here online, I’ve found more love than I ever expected. Not once will any of you ever see me, nor I see you, but that doesn’t change a second of what we share, by sharing right here, your time with me.

Please read my blog from 2 years ago today – 04/05/2014 – Lightening strike

Over the last couple of weeks, I have been having more and more spasms in me rib cage. There have been the total lock downs which I have become used to, they don’t phase me any more than a spam in my arms or legs would, but now I have a new pain and it catches me off every single time it happens. They are sudden, sharp and painful, like lightning strikes that circle my torso and cause me to stop dead whatever I am doing and then they are gone. I know well enough that the length of time that spasm lasts can be anything from a second to weeks, but these are so different and have now been around long enough for me to add them to the list of things that are happening. The very first was when I was in the kitchen sorting out my lunch, I thought that I had caused it by twisting or maybe nipping a nerve, but while I was there it happened three times, but still I dismissed it. It didn’t happen again until the next day just as I was getting up and dressed and bang, I was stopped and in pain, not in the same intercostal….

Words of help

Posted on April 7, 2016 by livinginalimitedword

Relationships, even when there is nothing wrong with either of you, can be tricky things. When one of you has a chronic illness, the level of trickiness just grows. It’s yet another thing that could with ease be destroyed in seconds. I have known and read many blogs from those whose illness was the final straw, and the relationship has ended, almost as soon as the diagnosis has been made, some don’t even make it that far. I know without a doubt, that I am extremely lucky in the fact that my husband hasn’t just as they say, “stood by me”, but he loves me as much, if not more now, than before. For both of us, our love just keeps growing, but that doesn’t mean that my health hasn’t and doesn’t cause us both problems. Clearly, I can’t speak for him, but if I can find those problems, then I’m sure he has done and does too. We wouldn’t be human if we didn’t, no one’s lives are a bed of roses, every second of the day.

The major issues that my illness brings with it to our marriage have all be discussed before, but I haven’t really spoken about the day to day ones. In fact, it was a line from yesterday’s post that made me realise that something was more than missing.

“When I do have to stand I find myself fighting so hard to stay upright, not because I’m scared of falling any longer, but because if I do, I know Adam is going to have just one more thing to worry about, the very thing my chair was supposed to take away.”

It’s those small worries, the things that happen daily where my first thought isn’t about me, but it’s about Adam, even when I might be the one in danger. If I weren’t ill, if I were living a normal everyday life, yes, Adam would enter my thoughts a lot, but he wouldn’t be there if I found myself tripping over a paving stone. Everything that happens to me, every change in my health that appears, I always think, “How will this affect Adam”. When your partner changes from just that and into your carer as well, everything changes. Even the tiniest thing in my life is now also in his, and I am very aware of that fact. Right now, yes, his life has changed dramatically and yes, he does a great deal for me, but he does still have his own life.

When you first become ill, little changes, it is nothing more than a factor to be thought about, but it really has little impact. Life goes on. You talk about, even plan a little but everything is distant, something that might or might not happen. It slowly picks up and in yourself, you know it is growing and slowly taking over, but you do everything to keep it as that, inside you. For me, I managed to push that right to the day I became housebound. Having only one working arm, many jobs became impossible. Adams first role as my carer had begun. Yes, before that he had taken on things like the heavier side of housework, but not having an arm, meant he had to prepare and bring meals and drinks to me. Directly caring for me. I as a person was impacting on his life. Those words “Adam, can you help me…..” never leave my lips without a great deal of thought. Not because do I believe for a second that he will say no, but because it contains so much more than a few words. Each time I ask for help, it’s yet another thing that I have pushed as far as I can, that I can’t do anymore, it’s an admission of my failing body. More than that, though, it’s an imposition on his life. It doesn’t matter if it is help for a one thing at that moment, or if it is something that will be that way forever, it’s still his time, his life.

Every day Adams work days start the same. Once showered and ready to go, I often wake with enough time to say goodbye, but either way, if I see him or not, he puts out a full glass of coke on my desk, as I am always up within the next 15 minutes. If I don’t see him them, he calls around 10 am, just to make sure that I’m OK. If the weather is good, he comes home for lunch, just spending about 25 minutes at home, before returning to walk all the way up the very steep hill to his work. If it’s raining or he can’t come home for any reason, he always phones me and we chat about nothing for ten minutes. In some ways, I prefer those days, not because I don’t see him, but he has then had a whole day away from the house. When Adam gets home from work, after doing a full day of running around the hospital, he starts by reading my mail. Mail I can no longer deal with, I miss read and tie myself in knots over, frequently they have left me in tears of frustration, occasionally fear and anger. It may only take him minutes, but they’re minutes that should be his. At 6:30, he helps me relocate from here to the settee, carrying all my stuff as I wheel myself there. He’s normally relaxing at that time, but so we can be together, I disturb him, making him stand up again to help me, taking two more minutes. At 7 pm he fetches me a gin and tonic, I can’t do it, as just like the glass in the morning, I’m incapable of carrying a full glass in my wheelchair, two more minutes, more time on his feet. At 8 pm we go together into the kitchen, where he supervises my medications. Sorting out not just my meds for that minute, but also for the next day. While I use my nebulizer, he also fills four small bottles with ginger beer, putting them back in the fridge so that during the day I can fetch them myself. He then empties the bin, sorts out the dishwasher, another fifteen minutes of organising, sorting out and preparing, doing all the things I once did. Then we’re free to return to the living room for the next hour, well that is unless I drink my coke too quickly, then he fetches me more. At 9 pm he helps me undress, prepare for and get into bed. His final nightly task is to sort out the washing. Then, at last, he can have his shower and fully relax. At the weekends, he does the general housework, assists me when showering to make sure I am actually dry and once a month spending four hours making my psyllium pancakes. At some point almost daily he has to run to my assistance, as I’ve dropped something or knocked something over. Then there are the accidents we try to pretend don’t happen, but they do happen when my bladder fails. All of this is the impact of my health so far on his daily life, the impact that anyone watching would see.

What they wouldn’t see, is the worry, the fear, and the frustration that comes with every single one of those days. Or the guilt that I feel every time I watch him having to do anything thing because of me. How every time he heads into the kitchen clutching my empty glass to fill it again, I watch him with half hung head and eyes that feel nothing but sorrow, for once more I’ve destroyed his peace and his rest. If he chances on seeing it, he tells me “Stop being so stupid, that’s what I’m here for”, and I always see the love in his eyes. I have burdened him with so much more to do than any individual should be expected to, and the worst thing is, this is just the start.

I know from what he says, the way he always checks when he’s not here, that he constantly worries about me. I know by the way that he appears in the middle of the night in the kitchen, once I’ve been to the loo, just to check that I’m OK, that even at night he doesn’t rest peacefully, just in case he is needed. I know by the way he doesn’t want to go to work, if I seem just a little too unsteady, too not awake for his liking, that to him, I come way above his work. I know he never stops worrying about me, hardly for a single second of a single hour. If the tables were turned would I be any different, well I like to think not, but none of us know, any more than we did before we became ill, how we can deal with anything like this.

Not once, have I asked him to do anything for me until, I have pushed it far past the point where I am no longer capable, but that doesn’t remove the guilt. The pressures of being chronically ill never end, not just for the carer but also for the patient. Don’t let anyone ever think that being waited on by the person you love is a pleasure, it’s not, it’s far from that. The list of things that lie ahead, that I won’t be able to do is vast, and I will anguish over every single one of them, and he will fuss, and pamper and tell me off for being so stupid, for waiting so long before asking for help. We have all the love in the world, but the one thing we don’t have is time and if anyone is looking for the true cruelty of illness on any relationship, it’s that.

Please read my blog from 2 years ago today – 07/04/2014 – Perfection?

I am starting with a warning, a warning to any woman who become disabled and her husband takes over the housework, make sure you go around your home and go over how to clean every single thing that is in your home, I do mean EVERYTHING, miss nothing and be precise. Adam decided without saying anything to me yesterday evening to wash two art nouveau style hanger that are in our hallway. Both where beautiful and both were made to look like ivory and gold, but in reality are made of some kind of ivory coloured compound, painted in what I would call old gold. I bought them not that long after we moved here and for what they are made of they weren’t cheap but they were perfect for my chosen positions for them. With out house…..

Too ill for basic care

Posted on March 6, 2016 by livinginalimitedword

If there is one thing throughout my entire life I have hated, it is being proved wrong. I know it’s bigheaded to believe that you are always right, but when it comes to my own body, I thought I had, at least, one area of speciality that no one could argue with. I was daring to think that after 4 days of almost peace, where my pain levels had slowly begun to settle, that the bad spell, was on its way out. Last night, proved me wrong and it did it in style.

I had spent a very uncomfortable evening sat on the settee. Adam had to fetch me some of the antispasmodic the doctor prescribed for me just before 8 pm, as my stomach was tied in loops. I’m not really sure if they helped or not. Yes, the sharper edges of the pain was reduced, but they brought me no comfort what so ever. It is now my third time that I have tried them and compared to my worst spell, they worked miracles, but compared to me average, they did nothing. He has prescribed Buscopan, which is a very common drug for IBS, something I don’t have, according to the tests run by my consultant the last time that I saw him, despite the fact that I have all the symptoms. As always when I am unsure about the effects of a drug, I give it a quick Google, just to see what their effects are supposed to be. It was totally unhelpful, but I had to laugh at the final line in Wikipedias synopsis “It is also used to improve a death rattle at the end of life”. What on earth has that got to do with bowel and bladder problems? So many drugs seem to have some other odd usage, but at least, I laughed. What I did find out though has made me wonder if I should be taking it at all. Apparently, it shouldn’t be taken For “certain conditions when there is reduced bowel activity”, but it totally unhelpfully doesn’t say which ones.

By the time I went to bed at 9 pm, I was delighted to be there. Sleep had been dragging at me for what felt like forever. My stomach was in a mess, with pain showing up all over the place and there were area’s that felt as though they were being badly stretched. Experience was telling me that sleep was my only option for peace. Within seconds of lying down, I feel into a deep sleep. 11:30 pm found me awake, drenched in sweat and in pain, really bad pain. As I sat up, I knew I was going to be sick and that I had to move as fast as I could. I took a risk, a huge risk and left my wheelchair behind me, as it would do nothing but slow me down. As it turned out, it was a good decision. With a wrench, that came from somewhere around my waist, I started to bring up my last meal, eaten at 4 pm. Just as has happened in the past, as I was being sick at one end, urine was leaving me at the other and there was nothing I could do about it. I did what I could to tidy up, but my entire body was shaking, I felt terrible and I had used what little strength I had pushing myself to my feet. I had grabbed my dressing gown, which was lying over my wheelchair and had brought it with me, as I wrapped it around me, I sat on the loo to do two things, gather myself and to try and empty what remained in my bladder. It was after that, that I called out for Adam.

I had staggered my way to the bathroom door, fighting the pain with every step. As I reached it, there was Adam. The sudden vision of him standing there waiting for me, listening to me throwing up, started the shame meter. He sorted me out and took me in my wheelchair, which he had fetched long before I called, through to the kitchen for a cigarette and to give me some much-needed liquid. I sat in silence while he cleaned up the mess I made in the bathroom. Once again, I was in the horrid situation of knowing my husband was having to clear up my urine. If there is one thing on this planet that will strip you of all embarrassment, it’s shame, and I had it in buckets. It doesn’t matter how ill you are, whether or not it is out of your control, or any other fact you can think of, you still feel that shame. When Adam returned to the kitchen, I didn’t know how to look at him or what to say, other than “Sorry”. To make matters worse, as I put out my cigarette, I hurtled once more for the bathroom and doubled the amount I brought up and the mess he had just cleared.

This morning, I still feel terrible, but that’s not new. My bowels moved without pain or issue and the pain in my abdomen is still there, just as it was last night, last week and last month, but not at bad as it was last night. I don’t feel sick, but Adam and I have discussed it and are in agreement, I’m not going to eat today, just lots of liquid. I’m also going to put a large measuring jug that I have, into the cupboard in the bathroom. Hopefully, if this does happen again, I will be able to grab it, so I don’t leave myself feeling shame, just because I’ve been sick.

I don’t have a clue what else I can do, other than speaking to my doctor again on Monday. Whatever is happening down there in my stomach, is getting worse. When you are housebound, your options diminish dramatically. If I could get down those damned stairs, I freely admit that I would be now sitting in the emergency room at the hospital. I would be there, just so a doctor could check my abdomen to be sure there is nothing they can find that could be causing it. I would be there, not because I feel this is an emergency, but because it would put my mind at rest that I’m right. I can’t get down those stairs, so I’m stuck here. To get to hospital, I would have to call 999 for an ambulance, but I don’t believe that I need that type of attention. Doctors don’t come to your house these days, not for anything, not even when you can’t get to them. So I’m stuck, I can’t get that peace of mind, I just have to wait until I can speak to my GP and that’s not until Monday. Somehow, I doubt that even then, will I actually see him, or any other doctor, which is wrong as if I could get down those stairs, I would be in his surgery, not on the phone. My chronic illness has led to the situation where I don’t get the basic level of medical care, everyone else takes for granted. How can that be right?

Following a couple of comments, I just want to make clear that the point I am making is that being housebound, singles you out. Society has set up systems that work for the majority, and I don’t want to be treated any differently, just allowances made for the situation my health has left me in. If what is happening to me right now, was happening to you, you wouldn’t call an ambulance, you would simply go to where there is a doctor you can see, something I can’t do. The barrier of being housebound, is a barrier to my getting that basic care, that everyone else, takes for granted. On top of all of that, the cost to the NHS of my calling 999 for an ambulance is huge, followed by the cost of another to take me home again. This is one of those gaps in the system, one I have fallen into.

Please read my blog from 2 years ago today – What’s missing….?

I woke this morning as exhausted as I was when I went to bed, but at least, I woke once more pain-free in my back but not quite so comfortable in my lungs as yesterday. So pushing myself to have my shower just after Adam went to work, well might sound rather odd, but I am hoping that if I push myself this morning to stay up to time with my normal routine I will be able to have my full 2 hours this afternoon, rather than a short nap followed by a difficult shower. It often feels as though……