It’s my only way

Why does life have to be so contrary? I constantly find myself having to start all over, with things that I was totally sure I already have done and dusted. For example, my previous post. I thought all that I would ever have to do with regards to “potty training”, was done and dusted in childhood, yet here I am, once more like a baby, incontinent. We all know that they say growing old, is like a second childhood, but I have found that it isn’t just growing old that brings those burdens, health can bring them home even faster. I don’t think that I have ever, directly said that I feel like I am prematurely aging, yes, when it comes to skin, I know I made that link. Just a few months ago, I was looking at my hands and they suddenly looked old, really old. Yet suddenly, I feel as though if someone who couldn’t see me, asked me for a description of my life, that would be it, I am prematurely aging, with a large dollop of pain, added just for fun.

My gray hairs, which there really aren’t that many of, are well hidden with dye, and I don’t have that many lines on my face, but the rest of me, is doing a highly honed impression of someone in their 90’s. Chronic illness has to be one of the most unfair things on this planet. Taking our health is just the start, it’s not happy until it has taken everything. Yes, even I, just occasionally feel sorry for myself, usually, around the same time as I feel as though I am 90. I actually think that it does us good from time to time, to feel sorry for ourselves. In fact, we wouldn’t be human if we didn’t, I honestly believe that it is just as unhealthy to be depressed, as it is to be highly positive all the time. Somewhere along the line, we all have to find a balance, and for those of us who are ill, it’s even more important.

Most of the time, I think I do a reasonably good job at being what most people would call normal mood wise. Most of the time, I would say there is little change in “me” throughout all the years I have been ill. That isn’t just luck, it’s down to the fact that I closely monitor my feeling all the time. Well, not minute to minute, but more an overall view. I have made no secret of the fact that I suffered from clinical depression many years ago now. It took years of therapy for me to recover and to deal with the root problems. Some were missed, but in time, they too are being dealt with, but the thing I gained from all of it, was to deal with how I felt about everything and anything when it happens, and not to bottle it up somewhere, in the hope it would just go away. Of all the things I have learned over the years, from “potty training” on, that is the most important life lesson of all.

I have never been surprised by the fact that depression seems to go hand in hand with almost every chronic condition. Equally, I have never been surprised by the fact, that I have never been touched by it so far. I say so far, because, I also totally believe that no one is immune. I have had so many people say to me over the years that they are amazed by how I constantly have a positive attitude. If I do, well it isn’t because I try to be positive, I just try to be me and to be happy. If you deal with all the bad things in your life, if you forgive those who have hurt you, and you work on being happy, a positive attitude seems to be the result. So to those who think I am putting on an act, or sticking to that stupid phrase everyone says “You have to be positive”, I’m not. I actually think that doing so would be damaging and probably the quickest way into depression, putting on an act, just makes life harder, and it’s hard enough as it is.

So today, I feel 90. My body aches, my legs are only working under duress, I’m forced into my wheelchair even just to change the channel on the TV. Yes, we do have a remote, but I can’t see the stupid screen well enough, to manage unless I’m two foot away. My elbow hurts every time I try to go even that far in my chair, oh, and I’ve wet myself twice. So yes, today I feel useless, but I’m still not letting it get me down. It could be worse, I could feel 100. There it is, did you spot it, that’s my trick and it’s that simple, there is always a way things could be worse. I’m more than aware that no matter how bad I feel, it can always be worse. I’ve remembered every severe spasm that I’ve ever had, every time I have found myself unable to breathe or unable to stand. I have a picture in my mind of every stage of not just my health, but those worse than me, and I smile every time that I know I’m not there. I’m grateful when I can deal with my pain levels, and when I can’t, that I have a tablet that will at least help, and I tell myself just how lucky I am, for the way things are just now. So if tomorrow, I wake up feeling 100, I’ll be grateful that I don’t feel 101.

No matter how contrary life is, I intend to enjoy every day that I have, and I have no intention of finding myself once more struggling with depression. This is the only life that I have and no matter what, my health isn’t going to get the upper hand. All of us can get through chronic illness and be happy. I’m not saying it easy, it takes work, but monitoring your own mental health, can save you from a being in a place I never intend to go again. Don’t be afraid to cry, to shout and scream if that’s how you feel, but just remember, at the end of it, you have to smile again. Get the balance right and no matter how contrary your life gets, you too will be smiling.

 

Please read my blog from 2 years ago today – 14/09/2014 – Total muscle failure

I have just lost an hour of my life in the bathroom. I woke up this morning just before the alarm sounded because of the racket coming from my stomach, there was the most amazing run of bubbles travelling around inside of me and I knew it wouldn’t be too long before I would be going to……

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…..

We’re here

I was chatting with the district nurse this morning about an issue I had with a prescription Adam had phoned into the doctors on Monday, she confirmed my belief, I am totally invisible to the NHS. Adam had phoned in the prescription as he always does, and as is perfectly normal, we heard nothing until Thursday evening, when chemist delivered the oversized bag filled with meds. Amongst it, there was a blank prescription sheet with what was clearly a doctor’s writing across the top. I said clearly, but it was the very fact that it was almost illegible, that gave away the origin of the note. We could make out that it had something to do with the potassium tablet that I take, helped by the bigger clue, they were missing from the order. Adam phoned the chemist and they apologised as they had meant to decipher it for us before putting it into the bag. Apparently, the doctor wanted me to have a blood test, before issuing any more of this drug. It didn’t quite make sense, as if my doctor had wanted me to have a blood test, he would have just asked the district nurse to carry it out, as he knows they are here three times a week. Perplexed, there was nothing more I could do until the morning, doctors not being at work in the evening. I wasn’t just confused, I was also concerned, as I had taken the last of that particular medication that  morning, not worrying at all about missing the lunchtime dose, as I knew they would be here that evening, but now I had missed two and god knows how long the test would take, then for the prescription to be written up and filled.

This morning I phoned and spoke to my GP, he confirmed what the note had said and after a moment’s thought agreed with it. It hadn’t been written by him, but another member of the practice, who doesn’t know me and doesn’t know that I’m housebound and that I wouldn’t see it on the day she wrote it. He told me not to worry about not having them for a couple of days, and he would ask the nurse to take my blood today. This is far from the first time, that something has gone wrong in the communication between GP’s, District Nurses, and hospitals, due to there being nothing what so ever, without reading my notes in detail, to know that I am housebound. While the nurse was hunting for my vein, I asked her a question. “Is there no way that it can be added to the notes of people like me, somewhere that it is clear for all doctors and nurses to see, that a patient is housebound, so things like this don’t happen?” She smiled and said that I was far from the first to ask and in fact, her boss had asked that exact same question many times. I am not the first person to have been caught in one of these “misunderstandings” and I, personally, have experienced it at least twice before. She told me that details like that, are missed all the time and there are thousands of patients, just in Glasgow alone who are housebound, admittedly, most are elderly, but like me, not all. It has, and can cause huge problems, but to date, nothing has been done about it.

To me, that is yet again another sign that we are truly invisible, not just to the outside world, but even within the medical one as well. How can it be that something as simple as adding a code, or even a separate field beside our names, so that all concerned know and can then treat us, in that knowledge? I’m not a doctor, but to me, I can see with ease why it could be incredibly important to know at a glance, that not only is a patient housebound, but also currently in the care of the district nurses. Not only could this save time and money, it could ultimately save lives.

As we talked she told me that she had completed and faxed the form over to Westmark, with regards to my needing an electric wheelchair. They phoned her straight back and explained that my file had been closed a few years ago and that she would need to fill in a different form, for a fresh referral to them. Once again NHS madness. The new from included details of my medical condition and so on, all information that they still had in the so-called closed file. Not only is it there, but it is also right in front of them, on the same system, the nurse would be taking the details from. Shear time wasting and money wasting, but without it, no new chair. She told me that a large part of her day is now spent filling in forms, forms that serve no purpose, other than keeping someone employed designing them. The NHS screams constantly that it is short of money, well let start by taking out all the duplication of work that appears to be going on daily. A referral needs nothing other than the patient’s name, CHI number and what they are being referred for, ie wheelchair. Job done. The rest is there on the system, or should be part of the assessment. GP’s and nurses should be spending their time with patients, not filling in constant forms, or worse still, writing letters about what is there to be read off a screen. Just think, they could save millions of trees as well.

I know that I have time on my hands these days, but I can’t be the only person who looks at all of this and says, “Hold on, this can be done better.” In the past, I know I have suggested both in my blog, and when talking to actual doctors, of using phone calls and Skype for consultations that don’t require physical tests and examinations. Time and money saved, they are quicker, require less hospital transport, (ambulance, driver, attendant and costly stair climbers) for people like me. All savings for the NHS, and importantly less stressful and tiring for the patient. Yet, people like me, the actual patient, can’t get ourselves heard, because we are housebound. If we could get out, I could join in one of the hundreds of forums running across the country, all about improving patient care, but we aren’t heard, because we can’t get there. We are invisible and there is nothing we can do about it. Our care will never improve, because we aren’t only invisible, they can’t even hear us either.

 

Please read my blog from 2 years ago today – 10/09/2014 – On the lighter side

Breakfast over and time to write, it was an odd breakfast this morning, in fact, I don’t know what made me even think of having fried halloumi on rice cakes, but that was what I had, well it’s a change from porridge I suppose. I bought the halloumi to try as I had never had it but I knew it was a cheese that you can fry or grill on its own, I had tried grilling cheese onto a rice cake but it did exactly what I…..

Oops, doesn’t cover it

I have four more days until normality returns. Adam has been on holiday for five days so far, and that means I have had five mornings, doing what I normally do, but with the background sound of snoring. God, can that man snore. I suppose that he had to have a flaw, well, no one is really totally perfect. All this week he has spent most of his time pushing me around in my wheelchair, that is, when he is awake. My right arm is still driving me up the wall, and for good measure, my left is now joining in, I suspect that I have hurt it trying to protect the other. I realised yesterday, that it isn’t all down to my MS, I suspect that I have torn the tendon in my elbow. Doctor Google diagnosed it for me, of course, as seeing a real doctor seems so petty over a sore arm, especially when I would first have to try and convince one to come to the house. I followed all the tests, apart from the x-ray, and tendonitis fits perfectly. I know that my wheelchair is playing a huge part, but I suspect that an even larger part of the damage has been done while using my grab rails. I have become rather reliant on them for getting out of my wheelchair, and to the point where I can turn around a put myself onto the loo. I know that maneuver sounds easy, and it would be, if, I didn’t have to along the way, remove all my lower garments. I frequently find myself being jerked all over the place as I fight to remove them, while not falling over. Elegance left a long time ago.

When your body works perfectly, you take so much for granted. We do things with total easy and without even realising how complex everything really is. We stand up, sit down, walk, fetch and carry, and not once do we even think about any of it. Something as simple as making yourself a cup of coffee, has so many tiny complex movements involved, even if we don’t realise it. Every time you do something, even as simple as stirring that coffee in the cup, you aren’t just stirring, you are changing your balance, compensating for the movement that your arm is making. Your body is moving and without good balance, that tiny action can land you on your backside on the floor. My favourite balance thrower is when I look straight down, my body just wants to follow my eye line. No movement, no action is simple. I have to hold onto things, grasp tightly and think about what I am doing. Often it still goes wrong, and there I am, pulling myself back into upright and yanking at all those muscles and tendons, not designed to take my weight. The chance of anyone who is disabled, not injuring themselves at least once a month, is slim, very, very slim. Most of the time it is nothing of note, just occasionally, it’s that bit more serious, a cut, a graze, a burn, or a strain. Get it really wrong and it’s unconscious with concussion, being disabled, is dangerous.

I thought that once I was in my wheelchair, all that the worst of the danger would somehow be gone. Well, it’s logical, isn’t it? I’m no longer on my feet, I’m sat squarely in my chair and safe. The reality is, little has changed, as all the real danger area’s, I find myself still having to stand. All the wheelchair does, is take me from one danger zone to another, incredibly safely. Which is something that I find rather ironic and actually rather funny. Admittedly, since I have been in my chair, there has been nothing worse than the damage to my arms and a collection of mysterious bruise, which appear and disappear with gross regularity. All this is yet another problem that no one ever tells you will be part of your life, once you are seriously chronically ill. Yes, my list of hidden issues is still growing, and I am totally sure that it will just keep doing so.

The reality of our lives will always be, disabled or able-bodied, we are never totally safe from damaging ourselves, but I find it really strange that the more cotton wool that I am wrapped in, the more damage I seem to be doing. I can only conclude one thing and that is that my health is getting worse, even if I’m not really aware of it. I know that it’s a strange way to gauge it, but when you are doing less and less, how else do you gauge these things? Clearly, I can still measure my speech, memory, breathing and so on, but all the other things, well they have been changed by my not knowing how to measure them any longer. I hope that sentence makes sense because reading it back, and trying to put myself in your position, I’m not sure it does. I sit here all day, I sit on the settee all evening, and I lie in my bed all night, where is the activity, the events to gauge anything by, other than the accidents that I have.

For a while now, I have been telling myself that accidents were inevitable when you don’t use your limbs, they are going to become weaker and less able. There has to be a large element of truth in that, but it doesn’t explain all of it. As I said, I don’t have major accidents, just more inability to carry out those everyday things, the things most of us don’t even think about. Life is getting more difficult, more confusing and further and further away from the life I once had, yet there is nothing to see, in some ways, my invisible illness is somehow slowly becoming invisible to me.

 

Please read my blog from 2 years ago today – 03/09/2014 – Explanation

It happened again last night, just before 8pm I suddenly started to feel really ill and again I pushed it and sat there until 9pm. Once again I began to start feeling nauseous, not that I believed that I was actually going to throw up, but I wasn’t that far from it. Feeling that dizzy and that not with it is rare, in fact, it hasn’t happened that badly now for several years, my early nights, naps……

A new beginning

I met my social worker for the first time today. It is nearly two months since we made our application for assistance with my care costs. They may have moved slowly, but as they say, good things are worth waiting for, and for the first time in my life, I can say that I have met a social worker in a good situation. As a foster kid, I have terrible memories of condescending monsters who weren’t interesting in helping me, just in pushing me through the system. I had told myself that times had moved on and that the world is a different place, but I was genuinely, not happy about having to have the social work department involved at all. There was this scare in my memory that made me want to do anything other than having anything to do with them, but I knew there wasn’t any way around it. Financially, we quite simply couldn’t afford to pay all the bills that would mount up quickly without their help. This meeting was the total opposite to anything that I remembered. I really felt as though she was more than happy to help, really help.

When we made our first steps into finding carers to help look after me, we didn’t have a clue how the system worked, so we did what I expect most people do, we headed to the city council site and phoned the numbers we found there. From the start, we found the information on the site totally unhelpful and equally confusing. One of the numbers we called put us in contact with Cordia, the company who works on behalf of the city council when it comes to caring for those who need it. As you know, I went through their “assessment period” and now have help with showering twice a week. Today, their assessment has been taken into question and to be honest, I wasn’t surprised. They assessed nothing, other than how well I manage in the shower and what help I needed with that and my clothing. It should have included things like cooking, getting on and off the toilet, getting in and out of bed and so on. The full range of things that I have to do when on my own. All they did was ask me questions, nothing more than that. On hearing this, my opinion of Cordia fell even further.

Lori spent about two hours here with Adam and I going over the forms that we have to fill in and what they, the social work department could do for us, now and in the future. We had already filled in all the financial information when we saw Cordia at the start, they had at least sent over all the basic information. For the first time ever, we also got a straight answer about the costs and how much we would be given towards it. She couldn’t give me the final figure, but she said that she had the initial assessment and the figure would be around £61 a week whether I use one hour a week or if I needed full-time care. It was such a relief to actually have a figure at a last, and one that I know that I can cover out of my PIP payment. It really was a huge relief to hear that, as we didn’t have a clue what it would be. Personally, it has actually really been worrying me. Now that I know this, I am also now happy to have some more help, help that I have been needing, but wasn’t going to ask for until I knew the costs.

The biggest thing that I have asked for, is help at lunch time. I have asked for someone to come to the house and to make my lunch for me. I have had a lot of accidents over the years, burning myself and so on, and I have become more and more scared of using either the hob or the microwave. Our new cooker has a small oven that is higher up than the old one, so I have coped with that, but still wasn’t totally happy about it. It will be one thing off both Adam and my list of things to worry about. On top of that, I have also asked for an emergency alarm. You know, the thing that looks like a pen that hangs around your neck. Should I fall or have any sort of accident that I can’t deal with, I just need to press the pen and assistance will be on its way. Again, it’s something I know that Adam worries about when he isn’t here, and I have worried about on occasion as well. There is another cost of £3 a week for the pen, but it’s worth it.

She has left us with another pile of forms to complete, and a list of care companies who operate in our area. It shouldn’t take too long to complete the forms, and a little longer to find out about the care companies. She will be back here on Monday and will go over any of the points we have had problems with. Then it should be about four weeks before it is all hopefully signed off. Following that, well we just have to put it all into action. I asked her what the situation was if my health went downhill and I needed more help, apparently, it would be about another 4 weeks to action that as well.

I have accepted that I really do need carers in my life, the difference that having someone here just to shower me has made, is huge. Although I had been reluctant to ask for any more help, mainly because of the cost, I know that I do need it. It’s hard to admit that you aren’t capable of simply making yourself a hot mug of soup or some scrambled egg, especially when you have spent your life being proud of the meals you can cook, just as hard as saying I can’t wash myself. I suppose it’s like everything else, once you have made that first step, the others just get easier. I don’t know when the daytime help will begin, probably once we have the finance in place. I had feared that there wouldn’t be any until I was 65, but that appears to be another one of those myths that you pick up from TV. It has proved one thing to me, it never hurts to ask, as until you do, you really don’t know.

 

Please read my blog from 2 years ago today – 31/08/2014 – Helping others to help you

August has almost gone, it doesn’t seem that being housebound makes time pass any slower, I kind of thought that it would, I imagined it was going to be like one of those never-ending weekends when I was a kid, not allowed out as the weather was bad and nothing to do that I wanted to inside. I have heard so many people saying that when they were children that the summer lasted forever……