Tag Archives: Spoonie

The facts about people

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It still feels like every day is 10 hours too short and that I am no sooner out of my bed and I’m back there again. It has been such a strange week for me as Laura, my main carer, has been on holiday and I have had the joy of trying to get along with a complete stranger again. It could have been worse, as they wanted to send me not one new person but two, as Maureen, Laura’s replacement, couldn’t cover all the days. I quite simply couldn’t face that. The stress of one stranger had been more than enough, and I couldn’t face the idea of yet another one so soon. I know that to some that simply doesn’t make any sense. What could possibly be so difficult about having another person here to look after me, especially when there were several days separating them? For me, that’s a complex thing to answer, as it is a feeling that has appeared over the last few years. Having to say “no” to the agency was a simple to justify in my head. What is the point of having someone in your home to do things for you, when you have to be with them every second telling them what needs doing and how to do it. As Maureen was to cover all the other days, well that made sense, but someone else for just one day, that made none. It is the other part that is really so difficult to explain.

I have almost always found both strangers and crowds difficult. Which OK sound strange from a self-proclaimed extrovert. If you had seen the way I dress and acted back in the early 90’s, well you would never have guessed that inside that gregarious DJ, was someone who was shit scared nearly all the time. I had learned that if I put on a show, that that act allowed me to not show the truth. My work protected me from everything else, not just because there were bouncers all over the place, but my DJ booth meant I lived in a perfectly protected zone, one that no one else ever enters uninvited. Admittedly, those 7 years of working as a DJ allowed me to be the most extreme version of me, but that act started long before and still goes on to this day. When I don’t know people, and I am forced to be around them, well I panic, I get into a muddle, one that my health has now made so obvious, that I can’t bear having to go through it at all. These days I stutter, get wound up, drop things, forget not just my words but what I am doing and far more. It hurts, really hurts to be exposed in that way. This is the reason that I go nowhere without Adam by my side. But asking Adam to come home, to protect me and to keep my carer in line, well that would have been really mad.

I have often wondered if it is just me that has found that living with a chronic illness somehow magnifies all the quirks of our personality. Mind you, for me that is hard to know really which is which, as I was 21 when they think that this illness first got hold of me and who I was before that, was a child. But my inability to deal with strangers is something that has really grown over the years and the idea of being caught here in my home alone with one, that really freaks me out. It’s crazy, I know that, but emotions are always the one thing that none of us have total control over.

When Maureen arrived on the first day, well there I was all smiles and ready to show her how everything worked and what I needed her to do for me. What she didn’t see was the wreck who had been building herself up to being able to just say “hello” for the past few days. Once I had shown her everything, although I was only going to have 5 mins alone, well, I couldn’t get out of the kitchen fast enough and back through here to hide behind my computer while she finished things off. On day two, I let her in and hid straight away. Why I thought she would remember and get everything right without me, I don’t know, but that was my hope. I was of course wrong. She kept appearing in the living room to ask this question or that one and after she left, I found mistakes all over the place. She is due back tomorrow to make even more mistakes, as I simply can’t deal with the idea of taking her through it all step by step again. I will mention the biggest ones but I am still going to let her get on with it as I’d rather have shoddy than spend another half hour shaking and stuttering as I lose track of everything else again. When my health didn’t get in the way, didn’t exaggerate my every action, I would have acted my way out of this mess, but now, now I just hide and count the minutes until the whole mess is over with.

It took me about a month to totally settle myself to Laura, but it did happen eventually, and now, I fear the day that she will tell me she is moving on. I know it will happen, as she is a bright intelligent woman who has a degree and without a doubt, one day she will see that she really could be doing something that actually pays her a decent living wage. It is so wrong that our carers are paid so badly. I can’t afford to employ her directly and anyway I don’t need her 24/7. So I know the day will come when I have to face having to start all over again and I so hate that idea, especially after this week.

Laura has told me several times that she really can’t manage all the bills on what she earns. So in a bid to keep her here as long as possible and to help her out a little financially while Adam was unable to do the housework, I employed her several times outside of the system, to clean our flat for us. When I told my friend Jake all this he suddenly came up with an offer of cleaning work for her, from one of his friends. They told their friends and the ball started moving. She is now cleaning three of his friend’s houses every week. Money in her pocket on top of what the agency pays her and hopefully enough to stop her thinking of leaving me yet, but I’m not stupid enough to think it will last for ever. Well, nothing ever does.

Things happen

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In the past few years, I have never had the slightest problem sleeping. In fact, if anything, I have slowly started to sleep more and more. My record so far, is 15 hours in just one day, 13 of them without a break. But in the last few weeks, something odd has started to happen, that I really don’t understand. Firstly, I have started waking up, sat on the edge of my bed. How I got there, I have no memory of, all I know is that I wake up because my head has dropped forward suddenly, it’s that snap action that makes me wake. Often, though, just long enough to sit upright again, then it repeats itself. Eventually, I wake and go to the loo before I head back to bed and sleep again. On a bad night, I can go through all of that three or four times.

Then came the pièces de résistance. Having gone through that palaver a couple of days ago, after going to the loo, I went into the kitchen to have a cigarette. From the moment that I settled into my wheelchair, I felt quite awake, and very much in need of that cigarette. I think I had had about three or four puffs, before settling my wrist on the counter top, with the cigarette held over the ashtray. I find that at night, doing something like holding that small tube between my fingers is hard, many have flicked their way across the room, hence my resting place. Then, well then, half way through my cigarette, I fell asleep. I didn’t wake until 3 hours later. I was slumped forwards in my wheelchair, my eyes were in line with the second draw down in the kitchen unit, and my cigarette burnt out in the ashtray. I don’t remember even feeling tired, or that I was starting to drift, it must have been a split second from awake to asleep. When I did wake, I felt exhausted and incredibly sick. Despite that I headed back to bed at speed, only to wake another 3 hours on, sitting on the edge of my bed. I don’t have a clue what is going on, or why this is happening, I just want it to stop. Nothing like this has happened to me before and to be honest, the worst thing is, I’m not getting the kind of sleep that I really need. When I sleep, my muscles have a chance to rest, something they really need, so the fact that it leaves me with muscles racked in pain, is just the cherry on top. After falling asleep in the kitchen, I’m now worried where next I will wake up. Maybe half way across the hall, or sat on the loo.

I might not have the answer to that one, but I am hopeful that I might have found if not the answer, something that should improve my eyesight. It has been getting worse and worse over the past 11 years, my left eye is affected by my PRMS, but I have Macular Degeneration in my right. It is something that affects a lot of people in later life, for me, well like everything else in my life, it arrived early. By chance, I was watching a medical show on TV the other day and they tested out some research on a way of improving everyone’s eyesight in later years. I was sat there waiting for them to debunk it, as that has been the results of so many of their tests, but not this one. Apparently, our eyesight is reliant on three what the call, macular carotenoids: lutein, zeaxanthin, and meso-zeaxanthin. All of which can be found in brightly coloured fruit and veg, especially yellow and red ones. The problem is that you need to eat so many, that nearly no one does get enough, especially not enough to repair the damage done by time.

Normally this show doesn’t recommend that you take supplements of any sort, they believe in the natural angle, but not this time, this time, taking supplements is the only realistic way to get enough. They tested it on a mixture of people and not just for anecdotal results, they carried out medical tests that can measure the levels of carotenoids in your eyes. In just 90 days, the improvement was huge, something the scientist said would continue. They recorded not just being able to see colours more brightly, but they could also see finer details, that was the point I woke up to. My eyesight is atrocious, almost everything that I see has a blurred effect to it. It doesn’t matter how close I am, the edges are fuzzed. If I cover my left eye and look at something with just my right, I have total blind spots, with tiny gaps, like looking through a piece of heavy lace. If either of these things can be fixed, or even just improved mildly, it’s worth taking one more pill a day. The pills I’m taking are called “MacuShield”, I will give you reviews as time goes on, if they help me or don’t, but even if my eyesight was normal at the moment, I would still take it, as everyone’s eyes fail in time, according to their results, this could prevent it from happening and for less than £0.02 per day.

I have had to give up so much from my life that I loved, just because of my eyesight. I don’t expect to be sat here in a year from now, doing the finest of needlepoint embroidery or working with seed beads, but it was my eyesight that took these passions from me, long before my dexterity joined in. It is one of those things that we all take for granted, we open our eyes and the world is there, in all its glory. I really do fear the day that I find nothing, as I had a taste of that about 10 years ago. It lasted two days, I could still see shapes, but little else, it didn’t matter what I tried. I was pretty close to blind and at first totally terrified. I spent the whole of the first day, sat here bent over trying to make out something, anything of what was on my computer screen. All the time I was trying to work out if I could still manage to work. Clearly, it got better and I continued to work, but I really don’t want to go through any of that again.

 

Please read my blog from 2 years ago today – 18/09/2014 – A growing danger

I hoped that I might have a message from Jasmine this morning but so far nothing. It’s really hard when you receive a message like hers’ as technically there is nothing I can or anyone else can do to help her, as she could be anywhere in the world. For some reason yesterday, I had it in my head that she was in the…..

It’s my only way

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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……

We’re here

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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…..

It just keeps coming

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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……