Cold comfort

I have been trying so hard over the past week to find the time to simply write. Somehow, I have found myself unable to do even the little I would normally do in any given day. It is taking me an entire day, every day, to just manage my Twitter account. For some reason recently I’ve just been able to get up each morning, then sit here working my way through the twitter task list, that I’ve been using for years. Whereas I used to be able to be finished at around 1:30, giving me the rest of the day to sit writing, playing games or whatever takes my fancy. But now it’s been suddenly 4:30 or even 5:30 and I have done nothing but complete that task list, and I’m exhausted. I know that writing is just sitting here letting my brain drop out on to the page, but when you can’t even find that brain through the fog of fatigue, well you can’t write, moronic games are about all I can manage and I’m even finding myself frustrated by them.

So this morning, I grabbed the day and shook it into shape, even though I was up late, I was once more working well and I wasn’t letting my brain drift or disappear. Which may I tell you is really hard work. It’s far from the first time that I have gone through spells like this, in fact, they have been a constant occurrence from well before the doctors decided to give me a reason, that something I longed for things to blame them on. What I have noticed over the years is, there is only one thing you can do and that is go with them. Yes, you can shake yourself out of it for a short while, but it just comes back and your once more sinking into this quagmire that feels as though there is no way out of. So if I start to ramble, please forgive me.

I’m still fighting with the freezing nerves, it doesn’t matter how many layers of clothing I wear, at some point in every day, I will lose the fight and I’ll be in agony again. I have slowly found that the layers were actually too much. Yes, they helped my legs, but the rest of me would be pouring with sweat. It has become this never-ending game of altering what I am wearing, to deal with how things are at that second. Normally, I can wear less when I’m sat at my PC, as I have this high powered gaming machine that throws out tons of heat, sat right behind me. My legs though need those extra leggings and socks, sometimes, I’m even having to add one, two or even three wheat-bags, which I heat in the microwave. It is the evenings that I am finding the worst. I am literary strapping the wheat-bags to my legs inside my blankets while sitting in a tee-shirt and thin strappy dress. I can’t imagine that I’m cutting much of a pretty picture for Adam. Mind you, I bet he’s quite used to his rather odd wife by now.

I don’t think that my freezing nerves are helping much with my being exhausted as I am wasting so much energy daily just putting on and off clothes. I know that just going to the loo is a total nightmare. Freeing myself from the layers then sorting them all out again, often leaves my arms dead and hanging limp at my sides. When you have spent so many years just working out a routine that leaves me with enough energy to enjoy my life. It takes so little to knock this out and it’s so annoying when it happens. There is though one other factor that until the other day, never entered my head.

Due to things out with anyone’s control, mainly sickness or accidents, there have been continual changes with my carers lately. One of the women they sent as a replacement after her coming here for two weeks, I eventually chucked out of the house. She was a total waste of space and I landed up doing more and more of what was supposed to be her job. I would never have thought just a few years ago, that something so simple as the people I am used to seeing, being replaced, would actually cause me to be exhausted, but it does. The need for consistency in my life seems to be growing and I have been spoilt in the last two years as that is exactly what I’ve had. I knew on which day which people would be here, and that they come in the front door prepared to do what they always do, no need for me to stand over them, or teach them, or even explain anything to them. Now, who knows. I do know that I have lost one for good, she had an accident in December and has been trying to work ever since but has no decided to cut her hours, something that means she won’t be here anymore.

It will all be sorted out, but that doesn’t help me right now.

How a good idea, goes bad

I don’t know if you have heard of, or if you have ever considered having your medications delivered to you in blister packs. It had been suggested to us by Laurie my social worker when we told her that it was one of the many jobs, that Adam has taken on. I asked him to, when I realised that I was making mistakes, I frequently missed taking one or two different ones, for anything up to a week or longer. I had also been finding dealing with the doctor’s receptionist and even the chemist both difficult and confusing. He has been running thing perfectly, since the chemist, showed they were totally incapable of the simple task of ordering the correct drugs, at the correct time. They had been my first port of call, as I really didn’t want to give more work to him, than needed. No matter what I wanted, Adam took on the whole thing, ordering, storing and dispensing them into small plastic cups for me to take throughout the day.

When we heard that the chemist could split my drugs up, presenting them in time slots for each day, I thought that we had found something that might just work, where my earlier plan had failed to. At this point, we hadn’t seen the pack and to be honest, knew nothing more than the basics. Both of us made an assumption, that we would still order my drugs, the chemist would continue to collect the prescription when we asked them to, then they would make up the packs for the next two months, and simply deliver them all at the same time. Clearly, some drugs couldn’ t be in the pack, some because they are to be taken when needed, others, as they need to be placed in water. In general, we thought it was a good idea.

then yesterday morning, I had a somewhat confusing phone call from the chemist. As expected, the results of my blood test showed that I do require to be on the potassium tablets, they were putting together the prescription as we had requested. Adam had also ordered another drug and on that prescription, it said dispense weekly? It had something to do with the blister system, and I quite simply found myself confused. I didn’t have a clue what they were talking about, so I asked Adam to drop in on his way home and find out exactly, what the blister system entailed.

When he came home, he was armed with one of the blister packs. empty of course. He also had a full picture of how it all worked. Apparently, we would once more be handing the whole thing over to chemist. They would order the drugs as needed, (unlikely), split them into the blisters and deliver one pack every week. Before he told me all of this, I had spotted two huge problems, with the blister pack itself. The pack looks somewhat like a book, when open, it reveals seven rows, of four small square containers, into which my meds are supposed to be placed, then sealed with a paper cover, which you burst to get the pills out. The first problem was clear, the containers would only take a few pills, not anywhere near the number that I take in the morning or in the evening. The second, the container are so small, that I would have great trouble getting them out, without sending them all over the place. I manage already to find myself searching the floor, for pills that I drop. I am quite sure, that I would be doing so daily with those packs.

Then there is the problem of finding the trust, that I don’t have in the chemist to actually get it right. I would be having to put my trust in someone who has already proved, can’t get the ordering part right. On top of all of this, there is the annoyance of having them come to the house once a week to deliver the packs. As it is, they can’t give me even the slightest idea of the time that they will be calling. I find it annoying enough, that they come here more than once every two months. The comings and goings of the district nurses and my carers are annoying enough, and they at least give me a one hour period, within which they will arrive. I frequently don’t answer the door, unless I know someone is due. It is rarely for me and the energy that it takes going back and forward to the hallway, is draining. I would be doing it all day long until they arrived. That kind of agitation in my day isn’t something that I deal well with. I try my hardest to keep my day’s stress-free and although it may sound like nothing to most people, it is enough to both wear me out and leaves me in not the best of moods.

I can see that the packs may work well for some people, but they simply aren’t for me. Adam has equally put the idea down firmly. I could see it in his eyes and hear it in the tone of his voice, even as he was giving me the details of how the system works. At first, I thought that he wasn’t wanting to let go of the job, he truly likes doing things for me and the whole idea of caring for me appeals to him. Almost everytime that I have suggested a way of doing something, so that it wasn’t going to take his time, he has gently fought it. In this case, though, he actually had good points to put forward, as to why it wouldn’t work to our advantage, not just his. It can be a very hard tightrope to walk at times, as he simply doesn’t see that those suggestions are meant in a caring way for him. There will be a time when he will have to care for me, almost constantly, so for now, I want him to have his life, one not totally cluttered by me. Although I know he sees it totally differently.

I know that I have said previously just how difficult it was to accept help from outside carers, to begin with. It has become easier, but I do still find the help that Adam wants to give me, in some ways even harder to accept. It’s not because I don’t want him helping me, it really is because I don’t want to burden him with too much, especially when there is another way. There is so much advice and help out there for family carers, but everyone seems to forget the problems of those being cared for, simply because we care for them. When you are in love with your carer, the difference is huge. I want to care for, protect and do what I see as the best for him, just as much as he wants to do so for me. Most importantly, I want him to have a life outside of me. No, not only his job but a life, a life where he does what he wants without constantly worrying about me. Of all the things I thought my health would bring my way, tightrope walking wasn’t one of them.


Please read my blog from 2 years ago today – 16/09/2014 – Theory is easy

Yesterday seemed to pass without much more trauma or issue, I was sore all day and even sitting was back on my list of things I didn’t want to do but had little choice over. I kept waiting all day for my body to demand that I returned to the loo, but there was nothing but pain and silence. I read through……

Potty training?

I know it doesn’t sound like a big deal, and I never thought that it really was until I found myself here. I have been living in this strange world of not just having to wear knickers, like anyone else does, but another layer of an absorbent pad, now for over three months. Bladder incontinence, it doesn’t sound like much. What can be so tough about wearing a nappy to protect yourself from embarrassment, and your clothes, and home free of pee? Well, once you get past the balancing act required every time you go to the loo, or get dressed, not much, right? Wrong. Like everything else that our health throws at us, there is a lot of adapting to be done. You wouldn’t believe just how hard it is, to accept, no not the fact that your bladder has failed, but the fact that it doesn’t really matter. I still find myself flying to the loo, just to arrive once the whole show is over. Trust me, there is nothing odder than feeling warm liquid collecting between your legs and for it to be perfectly normal, and apparently not an issue.

That’s the first thing that you learn about these incontinence pads, they don’t absorb instantly. The way that they work is to form a sort of trough, where the urine sits until it’s absorbed. The first time I discovered that it was actually quite distressing. I was sure that the whole thing was a complete disaster and at any second, it was going to run everywhere. It didn’t, but just that feeling that it was going to, nearly turned it into one. In some ways, that is why I am writing this because I am sure, the first time it happens to anyone, they must think the exact same thing. Why they don’t explain something that simple to you, I don’t know, but they don’t. They hand you this huge pack and I do mean huge, each is about 18 inches by 10 by 8, and they give you three packs at a time, storage is your first problem. Learning how to put them on the second, and that reservoir of liquid is the third. Unless you wait until it clears, you will be in a mess, so don’t panic, just wait until it clears before trying anything.

It doesn’t matter how many times you feel it, or whether you are alone or in company, the desire to move as fast as you can to the loo, doesn’t seem to get any less. Being in company, just adds more questions into the mix. Is it safer to stay where you are, let it soak in and then go, or take the chance and head out of the room? Both rely totally on one thing, your confidence in how well you’ve positioned that pad. Did you remember to pull those flaps out at the back? Are those elastic strips tight into the fold of skin where your leg joins your body? Are your knickers holding it firmly in place? Which worries you more, pee on your white settee, or it running down your leg and all over your wheelchair? I have to say right here, so far, touch wood, they have never failed me, but that doesn’t stop the fear because the whole thing is totally alien.

We are only a few months old when our parents sit us on a potty and start hammering it into our heads, that we don’t want to have a wet nappy. I still don’t want to have a wet nappy, but unlike every parent I have ever known, when that nappy is wet, it gets replaced with a clean one, I can’t change mine. Those huge packs that they give you, only contain one for every 12 hour period. We are expected to wear the same one, wet or dry for that enter time. I have been lucky, very lucky to have friendly district nurses, they snuck me in another pack, so I don’t have to go through such a thing. I have to admit, that I did try it, not when the pad was soaking, but way beyond a dribble, just to see if I could get past the phycological barriers. I only wore it for an hour and to my surprise, it really wasn’t as bad as I expected. They do pull the liquid away and I didn’t feel wet, just moistened, as though I had some sort of cream that hadn’t been absorbed. I know that the day will come when I won’t be able to keep changing myself as I would today. I will have to wait for someone else to be here, to help me, someone who isn’t Adam. No, I don’t want him changing me, any more than I want him showering me, so the point will come, when I will have to choose which one, would upset me the most. It’s a hard choice.Then there is a question that has circled around in my mind many times, how can it be safe to wear a wet nappy for so long? The most obvious is the question of nappy rash. If it happens to babies, it must happen to adults as well. I know that our skin isn’t as delicate, but our urine is more powerful. Then there is the question of infection. Surely, all those bacteria circling around the entrance to your bladder has to raise the chances of bladder infections? What better environment can there be for those nasty little bugs to grow and to do their worst, yet that’s where we are told they should stay. How can that be right?

Becoming incontinent isn’t just about the day you first wet yourself, or even when you see the continence nurse, it starts there. Your right there at the start of something that is going to test you daily for the rest of your life. The only sure way of ending that is to have a catheter fitted, and that is just the start of a whole other set of problems. I can’t get past the fact that no matter how well they design and make incontinence pads, they are just as likely to fail as any baby nappy is, and they fail all the time. Add in our disgust of the whole subject and hatred of admitting we can’t control it, and no matter how much we want to pretend it isn’t happening, we are caught in something huge. I’m good at adapting, I’ve done a huge amount of it over the years, but I have a feeling that there is part of me, that will never adapt to it because it’s not the same as anything else. I guess it’s that hammered in training, as we are being dragged right back to the beginning of our lives and going through that childhood failing, all over again.


Please read my blog from 2 years ago today – 12/09/2014 – Danger, danger

Those who have been reading for a while will know that I more or less self-prescribe, when I want something I never see my doctor, I just phone talk to him tell him what I think I need and he sends me the prescription. Yesterday we went one step further, I now don’t even need to speak to him! I had phoned in the morning and said to the receptionist that I needed to talk to him and that I required…..

Finding a new way to smile

I found myself sitting here suddenly in tears, they were pouring down my face. My life has been flipped over and over in the past few weeks, and I suddenly realised that life, my life, is so much better than it was just a few weeks ago. This group of people crashed into my world and nothing has been the same since. So OK, I did invite them in, but I just never expected so much to change, nor did I think it would happen so fast, and it just keeps happening. Yesterday morning the phone rang, it was a delivery man, with the new pressure mattress that less than a week ago, I asked the district nurse if it were possible to get one. All I have to do is open my mouth and these people help me. It suddenly felt overwhelming, I don’t know why now, but it is. This is something else they don’t tell you when you first become ill, it takes just one or two really good people, to make up for all those idiots, and their hurtful ways of treating us, their ignorant questions and their total lack of care.

Between my social worker and my district nurses, everything has changed and I already know, that it’s not going to end here. It is a bit like someone has just picked me up in this huge feather duvet and are cuddling my life back into me. For so long I have struggled, with just Adam beside me, because I didn’t believe that the help was actually out there, and if it was, they wouldn’t help me. Why? Because I didn’t believe that I was ill enough. I thought that they would take one look at me and say what everyone else says, “You don’t look ill”. That’s just the way that it has been for the majority of my life, so why would it change, why would anyone look at me, and say “Here, here is the help you’ve been silently asking for, for years”.

When you have spent a lifetime, fighting with doctors, who didn’t think you were ill. Trying desperately to be believed, but finding nothing other than condescending medics who pat you on your head, and send you home. When finally they do believe you, there is no sorry, no we got it wrong, just a swift moving on, piles of tablets and no real help, with all that is happening to you. Through all that time, trying desperately to hold onto a job, because I couldn’t see, how I could survive without the money. No matter how bad you feel, no matter how ill, you just keep going, until you can’t keep going at all. So why would someone ever turn around and just agree with you? Why would anyone, give you the help that you know you need? Not only do they agree with you, they hand you all the help you need, without a second hesitation. It doesn’t make sense, but that is just what keeps happening. I ask, and they agree. Not only do they agree, they make sure whatever it is, happens, and happens quickly, not once but again, and again, and again.

I never imagined any of this possible, yet here I am, with carers, new equipment, medical back up when needed and even emergency supplies tucked away, in case of certain things going wrong. They are fixing my fears, ensuring my safety and setting things up, so should things go wrong, I can always get help. They are giving me something more precious than many might be able to get their heads around, the chance to just live, without any more worry than an abled bodied person might live with, and that means a lot.

Outside of Adam, no one has ever been this way towards me. No one has cared, really cared, really wanted to make a difference. Yes, I’ve had words in the past, the odd one here or there who has listened maybe helped me in the instant with this or that. But once that was done, they vanished. None ever asked is there anything else, none ever took the time to explore what might be needed, what might make a difference. They did their one bit, then left, and I struggled on with all the rest of it, once more feeling alone, once more being alone. In the past nine years, I have lived in this isolated bubble, housebound, without even a doctor who came to see me, even when I was really ill. No one came near me. Yes, I went to hospitals, for tests, for diagnosis of more conditions to add to my list. But that didn’t really help me, just offered sticking plasters to put over gashes to deep to ever heal. Smiling faces with the words “Your dying, we can’t do anything to really help. Take the tablet, they’ll take the pain away.” Tell me, what does that really fix? Yes, it’s one element, but there is so much more.

No one tells you how the system works, no one gives you a book of telephone numbers to call or even advice on what help is available. No wonder we feel alone, that we are isolated, inside this world that was built for the able-bodied and the well. Yes, I’m housebound, so no the height of the curb no longer bothers me, nor does the fact that what they call wheelchair friendly, rarely is. But it does bother me, that the cooker isn’t safe when faced from a chair, that the bed needs that mattress so I don’t get sores. It does bother me that trying to get around my flat in my chair, almost kills me, that I am permanently fatigued and that I can’t even wash myself. Is it any wonder that I am overwhelmed by people who listen and who act? Is it any wonder that suddenly, I’m starting to feel alive? Is it any wonder that I am suddenly beginning to feel like a person again? I don’t think so.


Please read my blog from 2 years ago today – 08/09/2014 – An eye on the future

Adam is at work with it being Monday, but although for most of the weekend he seemed to be avoiding setting up his new laptop, he eventually got round to it yesterday afternoon. I honestly think he was worried about it with it being a Mac and not a PC, I kept trying to encourage him to just plug it in as I was sure that it wasn’t as bad as he imagined. Yes it was going to be different……

Every journey…..

Why do we keep lying to ourselves? I know I do it all the time, in fact, there is hardly an hour that passes without somewhere in my brain that a lie appears and to make it worse, I don’t think they are lies. Some even go further, I tell them not just to myself, but to Adam. There not huge, simple little things like, “I don’t need help, I can do that alone”. That’s probably the one I tell the most, “I can do that”. Actually, I just told that one about half an hour ago. Adam asked if I needed help to make my lunch, as if I did, he would go out later to the Bank instead of just then. I told my lie and ushered him out of the house. Why did I do that?

The answer if very simple and I’m sure that you’ve already worked it out, I don’t want to be the person who needs help. I know I am that person, but I don’t want to be. Of course, I needed help with my lunch. I was making seafood in my favourite homemade sauce, one teaspoon of ginger paste, one of garlic paste, two of honey, a good squeeze lemon juice, loads of shredded pickled ginger, and some butter. Put it in a bowl with the precooked muscles, prawns and squid rings, and microwave for 1min 40secs, season and eat. It’s simple, delicious and deadly. The deadly bit is that it produces a wonderfully flavoured broth, a broth that without great care slops out of the bowl and all over me. I’m not sure what is worse, the pain that boiling hot broth causes to my skin or the waste of something so delicious. So yes, I needed help but I wasn’t saying so, I was once again being me. If anyone was wondering why I asked for outside helpers to come in and cook my lunch for me, now you know. An outsider means I can’t say, I can do it, as they are there to do it for me.

I don’t like lies, and I really didn’t think of them as such. They are excuses, excuses for me to keep pretending to myself that I can do everything. You know something, it is far, far, harder for me to accept that I can’t do everything, than it was to accept that I am dying, how screwed up is that. I thought all of this was dealt with when I accepted having someone here to shower me, yet here I am, still struggling with my independence being taken from me, even if it is with my permission. I was asked the other day by someone who has been reading my blog for over a year on and off, if I could help them, with the same struggle. I confidently gave them a list of few posts from the last couple of months, as I thought at that second, that I had this one licked. Clearly, I was wrong and I apologise for that. I thought that I had it licked but suddenly, it has worked its way back up to the surface. When I caught myself doing it, I also realised that as I said at the start of this post, I’ve been lying to myself about it all along.

There really is something about out personal independence that is so deeply ingrained that any threat to it at all, is answered with an instant defence. I have discovered over and over that the same thing is required, I have to actually say out loud, that I am not able to do something. Not out loud to myself, but to Adam. It wasn’t enough that he was in the room when Laurie ask me if I wanted help and I said yes, I hadn’t said it to him and somehow, that has become what is important. When he came home, half way through my writing this, I told him without exception, if I am making myself a meal that is hot, he is to get in between me and the food and take over. Yes, I will be having to teach him how to cook most things, but he is to not let me physically put anything in, or take anything out, of either the oven or the microwave. I had to do just the same with my meds, my mail and everything else that I have handed over into his care, and it has worked. I now don’t bat an eyelid when he does any of the things I no longer do. I’m not even tempted any longer to open a letter with my name on it, it just goes in the pile for him to sort out when he gets home.

For me, that is the thing I now see I have to do, I have to make it know verbally, as sorry, writing it here, isn’t enough. Once said, it has become a contract, something that has to be stuck to on both sides and from there on, I start to accept it and to live with and to it. I know that it might not work for all, but as there is one thing I don’t like, telling lies, it is the perfect method. It doesn’t matter what care we are talking about, you have to be ready, to be able to say those words, and ready to live by the consequences. That’s what care is, it’s a contract between you and the person supplying it. Yes, if your not happy with how they do it, you can break the contract and find another way to solve the problem, as you are always in control. Verbalising it, takes it out of your head and into reality, and that’s the first step to accepting whatever the change is. Acceptance isn’t just one step, it’s many, many steps and each one takes adjustment. Step one is made, no more cooking for me when there is someone else who can do it for me. Now, I just have to accept it fully, I know from having the carers here to shower me, it will take me a few weeks to be comfortable, but nothing starts, without taking that first step.


Please read my blog from 2 years ago today – 06/09/2014 – Joining the party

I didn’t realise it until a while after I wrote it, that I was opening a new chapter in my MS. I mentions that I was having gentle spasms, I can feel muscles getting tight but without reaching those solid painful climaxes I am all to families with. The first one I noticed what my stomach, at first I thought it was some kind of reaction to my eating or drinking something, which is why I went……