We’re here

Posted on September 10, 2016 by livinginalimitedword

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…..

Finding a new way to smile

Posted on September 8, 2016 by livinginalimitedword

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…..

Posted on September 6, 2016 by livinginalimitedword

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……

Oops, doesn’t cover it

Posted on September 4, 2016 by livinginalimitedword

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……

It just keeps coming

Posted on September 2, 2016 by livinginalimitedword

I am now on the “vulnerable person list”. Until yesterday morning, I didn’t have a clue that it even existed, but I’m glad to be on it. My social worker, Laurie (correctly spelled this time), called to tell me that she had put my name on it and to explain just what it was, which I was glad she did as my mind was racing. Apparently, the list is held by both the police and fire department so that should this block of flats needs to be evacuated, they know that I can’t get out of here unassisted. I have to admit that it was something that used to worry me, but I stopped long ago, and had just sort of accepted should something happen, it would be goodbye world. So, if you are like me housebound in a flat, life doesn’t end in flames, there is another way, get on the list.

That was just her first bit of news. Next, she told had news on how much Cordia, the care company we are using just now, are actually charging us for the care we have at the moment. We have been trying to find out since the very beginning and to be honest, worrying as well. There was nothing to worry to about as each week cost just £16.59, not the £40 per shower that we thought it might be. Our first bill will be sent out soon, as we didn’t start paying anything until the last three weeks. Before that, it was free as I was being assessed, apparently, but I’m not complaining about free. She didn’t end there either, she gave me the web address for something I knew existed, but wasn’t sure on the details, a key safe. If I am going to have one of the emergency pens I spoke about in my last post, I will require one so that they can access the building to help me. It is basically a box that is attached to the outside of the house, inside which we can put a set of keys. Just like any other safe, there is a code that is required so they can open it and it is also recommended by the police, and accepted by insurance companies. Again, should the fire or police need access, the company will give them the code too, so they don’t have to try break down the door. For any interested in one, the web address is www.keysafe.co.uk, they aren’t cheap, but they are worth it. As I said the other day, this lady is good and I am so glad that we made that phone call. It may have taken two months for the Social Work department to allocate someone to us, but the wait is being made up for by the speed she is now moving at.

Yesterday, we spent the afternoon filling in the forms that she left us with. They are like so many forms that I have filled in since I have been ill. Loads of questions that were answered fully in the first question. Why ask for details of how your illness affects you, then ask what help you need? Surly, “I’m housebound, wheelchair bound, unable to shower or cook meals, clean the house, deal with phone calls or mail. I need ambulance assistance to leave the house, and support when out or dealing with strangers.” sort of sums up most things, but we wrote it, or something similar, over and over just to keep them happy. Forms are a pain in the backside, but they seem to be what makes the world go around. She is also posting me out another form, this one though isn’t for me to fill in, it for the district nurse. Westmark, the division of the Glasgow NHS who supply electric wheelchairs, now need this form completed before they even agree to assess me. Laurie, Adam and I, plus the district nurses are in total agreement that I need one, that doesn’t mean that Westmark will agree, I have been through this before. The last time, I was turned down because we live in a second floor flat. They said, that I didn’t need one as I wouldn’t be able to get it out of the building. But it never hurts to try again, especially, as it is now 12 years since their last assessment and I will only be using it inside the house.

Laurie’s help hasn’t ended here either. I asked her if she knew how I could get a new pressure mattress, mine is now about 11 years old and no matter how we turn it, there is a dip. She said that she thought that it was actually the district nurses who deal with that, who I already have loads of contact with. I still not sure why I have never thought of asking them, but I hadn’t. When the nurse was here on Wednesday, I asked her and she said yes, it is them that issue them, and that she would see if she could sort out a new one for me. This lady is changing my life at a speed that I can’t believe, she is due back here on Monday, and I can’t wait to see what she will come up with by then.
As for how I am, well other than all the normal problems, my right arm has decided that causing me pain. It started a few weeks ago whenever I used my wheelchair, but slowly it has turned into none stop discomfort and pain whenever it chooses. I am used to it being painful at the end of the day when I’m tired and my body is worn out, but it has decided that all day is far more fun. Whenever Adam is here, he has been pushing me around the house. Hence, my renewed interest in an electric wheelchair. It is really nice of Adam to push me everywhere, but it really isn’t an answer to anything, even at the end of the day. This sudden change has not let up, and even when I have taken a booster pill, it still hurts, especially in my elbow and the muscles just above it. The higher morphine dose does take away the aching, but the sharp pain around my elbow and directly above it isn’t touched by it. I’ve not mentioned it until now as to be honest, considering all the other things my body is and has done to me, it’s nothing. I have started to realise that accepting or ignoring pain, has become part of my life, and I suspect that is something many of us do. We become so used to it, that telling anyone seems kind of petty. We are ill, so what if something new is causing us pain, that’s just the way life is. Isn’t it? Trust me, I do it all the time, and it is an incredibly hard thing to stop doing. I have lost count how many times the District Nurses have told me to take my meds for breakthrough pain as that is what they are for. It just worries me, it can’t be helpful to my body to keep piling in more and more morphine. Yet, they say it’s fine. I’m just not so sure.

Please read my blog from 2 years ago today – 02/09/2014 – Everyday bombshells

I know it will never happen in my life, but I honestly would give almost anything to have a “matter transporter” or a “food replicator” to actually be invented and in my home! I used to really hate shopping and I was delighted when on-line grocery shopping arrived, it was wonderful, the freedom of not having to actual go to the shop was an absolute joy and I have to say an……