Mind the gaps

I seem to be spending so much of my time confused these days, lost as to what is happening and when. I knew, and I have even mentioned them several times, that I have both hospital appointments and on top of that someone from Social Services coming to see me, but as to when any of these things were, well, next week was all that was in my head. It appears next week is far sooner than I thought. When Adam phoned me at lunchtime yesterday, he told me that he had managed to change the appointment with Gastro to an earlier slot on the same day. I had been worrying that going there so late in the morning, would lead to another horror story. I was so pleased that that one was sorted out, as I was quite honestly stressing about it already, and it’s not until the 16th of June, then Adam said something that made the colour drain from my face.

This Wednesday morning I will be at the breast screening clinic. That particular appointment was originally supposed to have taken place back in January. Due to not even being able to book an ambulance for five different dates, it was finally shunted all the way to May. I don’t know why, but I didn’t think it was until next Monday, no, that wasn’t one of the possible dates, just one my brain managed to create all by itself, something it seems to be doing with ease recently. My confusion was all the greater as quite clearly, Monday would no longer be May, but my brain was quite happily just ignoring that fact.

Not surprisingly, the fact I had that one wrong, meant the visit from Social Services had also become muddled. When Adam told me the other day, clearly, I wasn’t really able at the time to take in all that he was saying. He asked me something about would the two being in the same week, be too much for me. What he didn’t realise was that I was confused, so when he asked, I thought they would be three days to recover between them, not just one, plus, I thought I had the whole of this week doing nothing, just relaxing as much as possible, so no problem. Now I am faced with a total nightmare. Today, the shopping arrives, Wednesday, out to the breast clinic, Thursday to rest and then the assessment on Friday. This is a hugely busy and stressful week for me and I wasn’t even aware of any of it.

Dates, times, and appointments, all things that seem to be becoming more and more muddled. It doesn’t matter how many times Adam tells me what is happening, or how many times I have written these things down, my brain is determined to make a total mess of them. It isn’t helped as Adam throws into the mix of chatter about other people, his family, what’s no TV and so on. What should be clear information, lands up in my mind as anything but. Then leave me alone with what he thinks is clear details, and slowly I turn it into anything but. We have come up with different ways of dealing with this in the past, but none of them work and none of them result in breaking my confusion. But that doesn’t mean that we have given up, I have come up with a new idea, one that is at least worth trying. Last night, I suggested to Adam, that every Sunday evening when we sit down together to watch TV, that the first thing we do, is to go over everything and anything that will be happening in the next 8 days. I want him to tell me about what he will be doing, if he has time off, or he’s doing something with his family. If we have hospital appointments or if anyone is going to be coming here. I am hoping that with it being clear defined information, that we discuss face to face, that I will be able to avoid the panic attacks, of being totally lost.

Unless you have lived with confusion, it is something that is difficult to explain. I used to be so good at dates and so on, I never in my life had the need of a calendar or even a diary. I remembered everything, birthdays, days out, you name it, I knew when it was due to happen, at home, outside of it or at work. Finding that you can’t do something as simple as remembering the date of a hospital appointment, is scary. It’s even scarier when you suddenly don’t even know how old you are and have to work it out from the year you were born. Yes, that has happened to me, and more than once. We don’t expect our minds to drop information that simple and that vital, so when you are searching wildly for the answers, the fear starts to grow and just makes it worse by the second. It feels as though someone has managed to get inside your head, and has plucked all that you need that second, out of its home and planted it somewhere else, it’s just you don’t where. You run from place to place, to place, getting more and more desperate by the second. Should it be a case of someone else, telling you, you have it wrong, the effect is even worse.

I had without any doubt in my mind, the next two weeks planned out, I knew where I was going to be, what I was going to be doing and I was safe. Suddenly, all that knowledge was ripped into tiny pieces and I was standing there desperately trying to catch each piece as it fluttered just out of reach. It was out of reach because I knew where it was meant to be, I had known for weeks, so how could this new information possibly fit into my life. Making it fit was like picking up a mallet and voluntarily hitting myself over the head with it and I had to do it, as I now trust Adams brain, far more than I do my own when it comes to this sort of information. Once you find your brain letting you down, even if it is within defined parameters, you start to mistrust it in others, but there is only so much double checking that you can do before you drive yourself insane.

Watching your brain fall apart isn’t that easy to live with. I tried for a long time to pretend it wasn’t happening, but it is, and I know I can’t pretend it’s not any longer. It’s a growing fact, and something I am becoming more and more aware of. Which in an odd way, I guess is good. If I wasn’t aware, well I would be in a far worse place than I am.


Please read my blog from 2 years ago today – 31/05/2014 – The small things in life

I don’t know who you are but good morning to the six people reading my blog at this very second, 10:49 am 31/05/14. I really love that little globe at the top of my blog page, it has this strange effect of changing my mood, just by looking at it. There are days like today when I pop in to pick up the details for the link at the bottom of each post, to the post from 2 years ago and I am greeted by flags around the world, flags belonging to people who are connected to me, right at that second. Just knowing……

Step by step

Taking time out from blogging is starting to open up my life again. There has been a list of things waiting to be done, that I just didn’t have the energy to do. The other day, I started work again on what now feels like a long ago dreamed up list of the things that I need to know to put my mind at rest, when it comes to the subject, of my future. The other week I had broached the subject with Adam, about getting in contact with Social Services in regard as to what help they can and can’t give us. I did write about it, but it took a second discussion and my finding both the email address and phone number, before Adam contact them, at the beginning of this last week. Several phone calls later, and we have managed to arrange for someone, to come here and talk to us. Someone will be coming out to see us, at the end of next week, which just proves what I suspected, nothing happens as quickly as we want. If we had waited until it was to us an emergency situation, we would have been struggling for weeks. The next on the list, well it was, of course, sorting out the issues with the grave that I thought I owned in Aberdeen. Somehow, when my son died, the documents for the actual plot, landed up in my ex-husband’s name. To my surprise and delight, when my daughter took the documents to him, he too was shocked and signed all the papers needed, for the name change to take place. The next step would be really simple for most, but not for me. I had to make a phone call. This time, I knew that it had to be something that I did, and not something I could hand over to Adam.

Despite all of the undeniable facts, that I am heading rapidly in a downwards direction, Adam is still finding doing anything that is connected to my death, extremely hard to deal with. I didn’t need to talk to him about that fact, so I knew that regardless how I hate the phone, I had to make this call. I have to admit, that it wasn’t just this dragging exhaustion, that was stopping me, but also the fact that I somehow had to talk to a stranger, and worse still, one I couldn’t see. Without a doubt, it had to be done on a good day, even then, I knew that I was going to have to work up to the point, when I could actually lift the receiver, and dial the number. I tried a couple of times last week but just couldn’t do it. I just knew they were days when things weren’t as good as they should be, so I waited. I know that might sound pathetic to many of you, but it really is something that is that difficult, for me to do. I eventually managed it on Wednesday afternoon. It lasted no more than five minutes, but I was so glad to hang up and take a breath equal to the one I took before I committed myself to action. They hadn’t mentioned it when I phoned to get the forms, a conversation that found me in tears within seconds of saying “Hello”, but still I wasn’t that surprised to discover there would be a charge of £34 to redo the documents. I actually made it right through the call without a single tear, just a lot of stuttering. I actually can’t remember when I last wrote a cheque, but fortunately, I had had the foresight to put my chequebook where I could and can still see it. Which proves I do have a brain occasionally.

Adam took all the paperwork with him when he went to work, so he could post it for me. That evening, when we were just sat watching TV, he turned around to me and said, “I was thinking when I was at the post office, how weird life is. Just 16 years ago, we were happily living in our first flat together, and there I was posting off documents that referred to your funeral. How has this happened? No one should be arranging their wife’s funeral while she is still very alive.” I thought for one horrible moment that he was unhappy about what I was doing, but it turned out that it wasn’t that close, it was more a case of no matter when it just wasn’t right. As I said to him, though, you just need to watch the TV adverts to see that these days, people are planning and paying for their own funeral all the time, it is becoming more the norm, just as it should be.

Quite rightly, both of us actually still find it a hard subject to talk about freely. We do when circumstance brings the subject up, but it’s not a regular topic of conversation. Like most things, though, the more we do, the easier it seems to get. but no one wants to think about the actual event and all the stuff that surrounds it, it still feels a little like talking about it, means that we want it to happen, which of course, we don’t. I know that when I sit here writing about it, it does read as though I am totally at ease with all of it. I am no more at ease with it, than you are about your own death, it’s just I am the type of person who wants to remove all the added stresses of my death, from Adam. I will never remove the pain he will feel, but if I can make the rest easier for him, then I will. Death is a fact, and it does have to be discussed and I clearly believe that things have to be organised and arranged in advance. If I hadn’t started looking into it a couple of months ago, we wouldn’t have had a single clue, that my son’s grave was in my ex’s name. If that hadn’t been discovered until after I died, it would have caused huge issues. Once I have the documents all correct and legal to use, the next step is to once again, contact the funeral directors, and get it all signed and sealed ready for the date it will be needed.

There is for me a strange comfort in getting all of this organised now. I’m not looking forward to the meeting with Social Services, but it has to be done. We both need to know what they can and can’t do for us, and even just getting the first contact in place, so when things get worse, they are there, no hassle, no assessments, just hopefully a phone call and life will go on. Once that one is done, the next and final one on my list is to contact the hospice here in Glasgow and talk to them about their possible role in my life. Thing are moving slowly, but they are now moving.


Please read my blog from 2 years ago today – 29/05/2014 – Out of Control

Another drug is now being prescribed for MS in the UK and once again I have received several really thoughtful tweets from people to let me know about it. I actually had for once beaten them to it as someone mentioned it months ago, of course, I checked it out straight away, only to be once more disappointed as it is for the treatment of relapse-remitting MS and of no use to me at all. Sometimes it nice……

Waiting for relief

I found myself in so much pain the other night, that I quite honestly didn’t know how to stand up. I know that is one of those statements that sound almost flippant, “I couldn’t stand up”, but honestly, I couldn’t. There it was, a pain that when I tried to stand stopped me from pulling myself upright. I wasn’t even what I would call stooped, as the best I could do was to obtain a semi-sitting position, just without the chair behind me to account for the somewhat odd position. Luckily, I only had to take the few steps needed to sit in my wheelchair. It was a pain like no other I had felt in my lower stomach. I wasn’t in any doubt as to its cause, it was coming from my intestine and it was the pain of something moving incredibly slowly inside me. I had in fact first felt it 24 hours earlier, just not in that position, then it was just pain, now it was debilitating. It was far more a case of the position, rather than the level of pain that was stopping me from standing upright. I felt as though, not only my insides but my entire abdomen that would split if I tried to push myself any more upright than I was. Whatever my guts were trying to shift, it was struggling once more, thanks to the muscles that my PRMS had rendered useless long ago.

Luckily for me, Adam had stood up quickly and left the room ahead of me. It was bedtime and I really hate Adam seeing me in that amount of pain, my wheelchair made it easy to disguise, as soon as I was sat again, there was nothing on the outside to be seen. Even on the inside, the pain subdued dramatically, clearly it was all about position, so sitting it was. From that point on, he wouldn’t see me trying to stand, so it was purely my problem. I also knew from experience, that it is the sort of pain that only lasts at most a couple of hours, but will appear again, once the stool has shifted to the next point, where my muscles can’t shift it, and so on until I can dispose of it, which luckily, is usually painless. I also knew from experience, that the stress that was already building about going to the hospital the next day, wasn’t going to be helping me much either.

Just before we actually left the house the other morning, I took a morphine booster. I had woken that morning in pain and I knew what lay ahead, not the disaster with the stairclimbers, but the normal trip is stressful enough. One of the screw ups of the transport system is that you are not allowed to bring your own wheelchair with you. All the time you are actually in the hospital, you are stuck sat on the most uncomfortable contraption I have ever sat in. A hard chair that looks padded, but isn’t, on small wheels that mean you have to be pushed by someone else, clearly not designed for sitting on for endless hours. Having a painful stomach was only going to make matters worse. I lost count how many times Adam offered to help me out of it and onto a more comfortable, in his mind, chair, but it wasn’t really the chairs fault. I was twisting and changing position constantly, he thought that it was my bum that was sore, but he was way off the mark. It would have made not a scrap of a difference where I was sat, I still wasn’t going to be comfortable.

When last night, I once again couldn’t sit still on the settee, and actually had to ask him to fetch my morphine for me, I got around to explaining what was up with me at that moment. Whenever my guts are this bad, it has a habit of triggering pain from my gallstones. On the whole, they really don’t bother me that much, but last night there was an added pain, one that I wasn’t quite able to explain to myself. When I leaned back, my gallstones caused pain in the front of me, when I leaned forwards to relieve it, I had an equal pain in my kidney on the same side. I should have done then what I didn’t until this morning, read up on what they symptoms of gallstones are. I already knew most of them, and on most sites, they told me just what I knew, then I found one that said the pain can shift into your back, and they can cause heartburn as well. Something else that I have had a lot of recently and couldn’t understand why. Even though I had taken the 10mg of Morphine that Adam brought to me at 7pm, it took right through until about half an hour after I had taken my night time meds, which included 70mg of slow release Morphine and 1200mg of Gabapentin at 8pm, to start to feel anything near comfortable. I know that most people would have been calling an ambulance if they were in that much pain, but I’m not most people. I’m used to dealing with pain, so this didn’t phase me as much as it would most, but if you still don’t understand why I didn’t call, well read my last post.

Pain doesn’t really upset me any longer, it is one of those things that the longer you live with it, the more use to it you become. In fact, I have noticed that I don’t take nearly as many of my Morphine boosters now, as I did even a couple of years ago. It isn’t because the pain is less, it is more that I can now deal with it better inside myself. Once you realise that not even that level of pain is going to kill you, well you breathe through it and wait to see what happens, if that fails, then you wait for the tablets to work. I frequently find myself putting up with it for a couple of hours, before the idea of a taking a tablet appears. When the pain is in my stomach, I am more likely to take an anti-nausea pill than I am to take anything else. As the pain has become worse, so has the nausea. Hardly a day goes by, that I don’t find myself feeling like throwing up, or with a mouthful of sick, that has suddenly appeared. It doesn’t matter how much pain I am, feeling sick is something that always gets more of my attention and far faster.

I am still waiting for my appointment with the Gastro consultants, and after the problems on my recent visit, I am quite honestly in two minds about going. Yes, that is how much it has affected me. Adam told me the other day, that the appointment is next month and that it is at 11:45. If he can rearrange it to an appointment between 9am and 10 am, then I would feel far happier about going. It is a fact that we have learned over the years, the earlier you can be there, the sooner you get home and with fewer the problems. It makes sense if you think about it. We have had to endure several long and tedious waits for a four man crew to be free, as the stairclimbers have stopped working. The earlier in the day you use them, the more likely you are to have a smooth trip. No matter how much pain I am in, or how many times I have to eat extra tablets, I don’t want to go through another horrendous day like the last one. I am quite honestly, no longer up to it.


Please read my blog from 2 years ago today – Understand OK

It seems the slower I get the faster my life is moving, just a couple of months ago I was really impressed and blown away when I was receiving between 80 and 100 new followers a day on twitter, I said then it had taken a sudden upturn, well it has done it again, with over 200 new people joining me daily. I am always tempted to sit and analyse the people who join me, but I fear if I do, that I will start to make changes to what I do, in an attempt to please more…..

Through hell and back

I hope you are sitting comfortably, as the tale I have to tell, has nothing comfortable about it. A simple hospital visit, that turned into a total nightmare. It should have been straightforward, the ambulance should arrive with plenty of time to take us to the hospital, see the doctor and another ambulance to take us home again. It should have been that easy, but it was nothing like that at all.

My appointment was for 11:15, but as always, we had no idea other than what we had been told by ambulance control, as to the when the ambulance would actually arrive. They as always had told Adam that it would be here, anytime after 8:30 am, the time my alarm would normally wake me for the day. So yesterday, my alarm was reset, for 6:45, a somewhat ungodly hour that I wasn’t looking forward to at all. For me, an hour and three-quarters, is a lot of sleep to lose, but to be ready, what other choice did I have. As 8:30 arrived, both of us were now ready and there was nothing more to do, other than wait for the doorbell to ring. I went about my normal morning routine and found myself by 10 am, playing games just to fill in the time. Adam was pacing about, looking out the window in hope of seeing it approaching then sitting again for a few minutes until he thought he heard something. That is a game that I have given up on long ago, but it is a character that I recognise in myself from years ago.

It was 10:40 when the buzzer rang and the crew started their way up the sandstone stairs to our flat. Even before Adam had our door fully unlocked and the storm doors held open for them, I could hear the noise of the stairclimber. As much as I hate those things, I have to some extent become used to them, but the racket they make is unmistakable. I had turned off the computer and had my coat on and sat in my wheelchair when the noise in the hallway changed. I even said to Adam could they have made more noise if they tired, as their voices were echoing around the stairwell. Then there was silence. Just for a few seconds, before their voices appeared again, but without the unmistakable noise of the climber. There was the odd sound of it trying to move, but the sound only lasted seconds, before we were back to the over loud attendants. I headed to the door, intrigued by this point as to what was going on.

I arrived there at about the same instance as one of the attendants. The climber had broken down half way up the stairs, they couldn’t get the chair up nor down the stairs and were going to have to call into control for another two-man crew, so they could carry me down, or for another climber. We were just going to have to wait and see what would happen. As 11:15 arrived and went, Adam phoned the hospital to say we would be late. He returned to the living room, to let me know that it wasn’t a problem, we would be seen that day, either as soon as we got there, or we would be added to the afternoon list. Not perfect, but at least we were going to be seen. As luck would have it, the second crew arrived quite promptly and were made it to the hospital, before 12. During the trip, we were told that the stairclimber had just returned into service, after spending the last 7 months in Germany being repaired. The crew were hopeful, though, that it just needed a properly charged battery.True to their word we were seen promptly and were back at the ambulance station within the hospital, to wait for our return trip by twenty past.

We were with the consultant for about 15 minutes, discussing what had happened in the past six months. To be honest, I didn’t have a great deal to report, as my chest has been really quite good, just the odd difficult point which he put my mind at rest about, in fact, things have been so good that he suggested that we didn’t need to return, unless I was having problems. With Adam working in the same hospital, he can go and talk to them at any time if needed, so we are in a different position from many. Right to the point that he has said he can just drop of a sputum sample without even talking to them, should I be having new problems. It was at the point where we should have probably been leaving when I suddenly remembered that I had forgotten to bring my DNR with me, as I wanted it added on to my hospital records so that no mistakes could be made in the future. I had to once again show that I wasn’t depressed and that I knew what it meant before he agreed. But he congratulated me on my ability to have looked forwards and to have made this decision so that it didn’t have to fall on Adam in the future.

We were about to leave when he once again gave me his standard warning about not being able to give me oxygen at home if I continued to smoke. I instantly pulled him up on it, and told him that I had read Scottish government policy that said the total opposite. As I went further in quoting some sections, he showed quite clearly, that he too had read it. Although not word for word, he too started to site parts of the policy document, both Adam and I knew then, it had been nothing but a hollow threat, and we had caught him out. Adam and I chatted about it on the way to the station room, I have to admit, that was quite smug about it actually. I seem to be growing stronger in my old age, as a few years ago, just because of his position in life, I wouldn’t have questioned him. I used to be very much part of the school of thought, as in “who am I to question someone more learned than myself”.

We had been outside for a cigarette and had been waiting for well over an hour for our transport home, when the women who runs the system within the hospital, decided to phone and find out what was happening. We were told they would be there in 20 minutes, a time that came and went. She called again and while on the call, she put it onto speaker phone, ambulance control had just realised they needed another stair climber to get me home. It was then that I started to get uptight and reminded Adam about what I had said, just a couple of days before. I had had the strangest feeling that the whole day was going to be a disaster, one that was going to push me to the limits. Control ordered another ambulance to come for us, we had little faith in their timing of half an hour and it too came and went, but this time for just 5 minutes.

When we arrived back here, well clearly, I thought that was it, it wasn’t. We were half way up the third flight of stairs when this stairclimber also broke down, this time, with me in it. I was in this half sitting, half lying down position and there was no way of getting me up or down, it was totally dead. Adam had run up the stair ahead of us, so he could get the doors open, it took him a couple of minutes to realise the noise in the hallway had changed and to return down the stairs to be with me. At first, I was fine, but when they called in and were told that there were no other batteries to swap over with and that carrying me was the only option, that I started to get wound up. I also heard them say, that not even a six-man crew could lift me and the chair, the whole thing was too heavy and didn’t have anything to hold onto, to lift it by. I was totally stuck. The tears started and my entire body was shaking as different nerves started to react to my distress. They did their best to calm me down and to reassure me that I was perfectly safe where I was, but trust me, it’s a position you don’t feel safe in.

The crew were great and didn’t take the word of their control. They knew where there was a battery and they called the guy who had it. It was on board another ambulance which was at the Southern General, half an hour from our home. I was just going to have to try and calm down and accept what was happening. I had a cigarette and Adam brought me a drink and between the three of them, the took me through several fits of tears and tremors. Adam even took over holding the bottom of the chair so that I could see him with ease, which actually helped a lot. No matter how well trained these crews are, it was being able to see Adam and knowing he was holding the weight at the bottom of the chair, gave me more trust in the fact I was safe.

The second battery arrived and switched them over. At last, we were on the move again. This is where it gets beyond a joke, half way up the final flight, it too broke down. I was once more stranded. It was the first time that luck came into this whole things. As they are apparently designed to do, there was enough power to go downstairs, but not up, so we at least could return to the landing, where we waited for assistance again. Another 15 minutes of waiting and yet another crew arrived, this time, I changed into the chair they can carry, and that was how I eventually arrived home. I know this post is long, but it was a long day and one that that needed to be written about, as without a doubt, it is a mirror to the state of NHS. At 4 pm yesterday, the time I arrived back in my home, there wasn’t a single working stair climber in the entirety of Glasgow. Nor will there be today, as those batteries take a full 24 hours to charge and no, they don’t have spare ones charging all the time.

By bedtime last night, I still had that feeling that I could burst into tears any second, I was right on the edge and I had no idea how to get rid of it. I have to admit, that even writing this, has made me feel that way again. I am sure that you also understand why it has taken till now for me to make a post at all, something, I thought I might have managed to write when I was home yesterday. The bad news is, that I once again have to put my life in the hands of the ambulance service next week. I just hope it is nothing like yesterday.

Please read my blog from 2 years ago today – 25/05/2014 – Facing the facts

I woke at midnight, I wasn’t sure the second I woke what was wrong I just knew something was and that it had broken my sleep abruptly. Then it happened again, I can say that as the second it did I knew that was it, that was what had disturbed me, something really hard to do these days. My lower legs both of them were in pain and not a spasm, this was different almost as though they were causing me pain just because they could. I lay there for a few seconds……

It’s hard to get right

It has been odd not spending my afternoon’s writing, so odd that I constantly checked the time, just to believe that I really was still on track with my day. My routine is so deeply etched into my soul now, that not doing what I have done every day for four years, felt like I was back in childhood, doing something wrong and waiting to be caught. I honestly had to stop myself from starting my next post or writing the piece that I have promised to another website. Yes, I am still adding in things to put just that bit more pressure on myself. I did though have the sense to tell them I wasn’t going to work to a deadline and if they wanted a piece, well it had to be at my pace, no theirs.

There was another change that I had yesterday, I ate a lunch cooked and prepared by Adam. Normally at lunchtime, I either have something bought in and cold, or I have cereal, but at the start of the week, out of nowhere, I suddenly had a craving for pasta, mayonnaise, sweetcorn and tuna, all things I knew were in the house. I had to fight off the temptation to just make it, but I remember all too clearly, that I have had far too many pans blackened with pasta stuck firmly on the bottom, so I resisted. I waited for Adam to come home and to cook it for me, and because he offered, to do the rest as well, I let him. In general, I’m not a fan of Adams cooking. It has far more to do with the things he chooses or offers to cook for me, than the cooking itself. I am really not a fan of fish finger drenched in vinegar and salad cream or anything else off the somewhat kindergarten concoctions he enjoys. If he were to buy or prepare for me a portion of sushi, or baked camembert with black pudding, well, I will enjoy every scrap. I was sure, though, that there was little harm he could do to my request, as long as he didn’t let the pasta go soggy, which is the way he likes it. Not only did he do a good job, that I really enjoyed, but he kept telling me all evening how nice it was to be allowed to cook for me. It is one of the few things that I rarely let him do, due to my list of really good reasons.

I had just finished eating my lunch when the phone rang, it was Adam, calling as he always does if it’s raining and he isn’t coming home. For once, he wasn’t so worried about me, as he was as to if I enjoyed my food. I think I have let a monster out of the bag, as he was also offering to buy more sweetcorn so he can make some more. I am just waiting to see when and if, he can come up with something palatable so he can keep cooking. I hadn’t realised that such as small thing, as asking him to boil some pasta for me, could inspire and be something that has a clear meaning and such an importance to him. He offers all the time and I honestly only turn him down for one of two reasons, it’s too late in the day, or I quite honestly can’t stomach whatever it is, he is planning to make. When you don’t have a great appetite, whatever you do eat, has to appeal. My fall back, for when there is nothing that I fancy is always cereal, I seem to be able to always eat that. Otherwise, it has to tick all the boxes on flavour, textures, and also appearance, or all I will do is pick at it and land up, not really eat at all. For Adam, if a meal doesn’t have a huge portion of animal based protein, there’s no point eating it. It along with everything else on the plate has to be cooked, to within an inch of its life, as it means he doesn’t need to chew it. Our approach to food is at different ends of the scale, but I so wish they weren’t, as I can clearly see the pleasure he gains, from this one small act.

Resting is something that I am having to teach myself how to do. Trust me, it is a hard thing for someone who has spent their entire life, running as fast as their bodies will allow them. Even though I am so tired that doing anything is testing, I have found it so difficult, to do almost nothing. I knew true “nothing” was a long way off possible, that just isn’t me, but stopping myself from doing anything beyond the minimum online, has been hard. That’s why I started with two days without writing. Even though it was challenging, I honestly needed it more than I actually knew. I have slept each afternoon and when awake, I just sat playing gentle games like Sadako, to occupy my mind, yet still at the end of both days, I was as tired as I started.

My exhaustion has been so clear to see, that even Adam went into one of his worry wart states. I don’t know what you’re like, but when I am this tired, I am also not exactly talkative, nor is my ability to follow conversations at it’s best. Adams answer is to chatter away to me, about everything and anything, in all honesty at times, I haven’t had a clue about what. Because I haven’t answered with vibrant responses, he got it in his head yet again, that there was a problem between us. I guess this happens at least once a month, but with me the way that I am just now, it appeared quicker than usual. Just as I was going to bed the other night, he stopped chattering, went serious and asked: “Have I done something to upset you?”. I have heard those words so many times, and my answer has and probably always will be the same, “No”. My brain is so far away just now, that my being quiet, isn’t something I even notice. I hate the idea that my health makes him think that way. He is the last person on this planet that I ever want to hurt, but finding the ways to put his mind at rest constantly, when my body and mind are locked up as they are, is tough. I don’t think there is anything much crueler that I can think of, than the fact, that my chronic illness, keeps hurting him.


Please read my blog from 2 years ago today – 21/05/2014 – The child within us

I was on one of my picture searches earlier today and for some reason I can’t remember now I put in a search for the house I grew up on, Friendville. The same search a couple of years ago brought up absolutely nothing, today, well it is flooded with information and photo’s. It just shows you what the power of a business has over the web. It still hurts slightly, to know that it is a glorified hotel, rather than a family home these days, as well families truly care about every stone of the place they live, businesses see then as assets and nothing more. I went through their website…..