Category 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.

Finding a new way to smile

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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……

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……

Let us live

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Sometimes, writing is hard, not because of the subject, but because you know before the words are on the page, the reactions that they will bring. Ask anyone who has lived with any chronic illness for several years and they will know exactly, what I am talking about. People look at us and listen to us, in a completely different way than they do to those who are healthy. They make assumptions about us, from the moment they know we are ill, they are waiting every second of every day, to be able to tick off their list of boxes, and to condemn us. Their preconceptions of what lies ahead of us always include one thing, depression. Well, I hate to be the one to burst the mythical bubble, but most of us don’t get instantly depressed and many of us, don’t get depressed at all, so stop waiting and please stop trying to put conditions on us, that we really don’t need.

It is those assumptions, that lead far too many of us, to simply not tell our work colleges and sometimes even our friends and family, that there is anything wrong with us at all. I fully understand this way of handling things, even though, I did the complete opposite. I chose to put myself under the magnifying glass, because just as with my writing, I believed that telling the full truth to all those around me, was the right thing to do. No, I didn’t force it down people’s throats, but I was upfront and honest with my staff, knowing they would tell the rest of the company. I wanted them to see that a normal life could be lived, despite your body falling apart, and I honestly believe it was and is the right thing to do. As far as I can see, the only way, that we can gain the understanding I hear so many looking for is to be upfront and to tell the truth. The more of us who do, the more the word will spread and the more understanding we will receive, hopefully, even in the distant future, we might even find it in complete strangers.

No one should feel that they have to live a lie, that they have to keep secrets, because of others and what they might say and do. We shouldn’t have to fear being treated like lepers, nor to be made to feel like a performing bear, we should be treated just as everyone else, but with care and understanding when we need it. Nor do we need wrapping in cotton wool as I promise, we don’t shatter if you actually speak about the reality of our condition with us. Those of us who are dying, know so, but remember, so are you. Granted, we will probably get there long before you, but dying isn’t the worst thing in the world, trust me, being treated like an alien race is far worse. We are still the people we were pre-diagnosis, nothing has changed, other than we now have a name for the monster who is living inside us. We should be able to carry on with our lives, just as we were doing before. We don’t want to be looked at as though we have a noose hanging over our heads, we can’t see it and neither should anyone else.

The beauty of being up front, of telling everyone at the same time, is I got rid of all the pitying looks, all the “I’m so sorrys” in just a couple of days. One month later, they had stopped holding doors for me and didn’t look jumpy when I passed their desks with a slight wobble. My attitude shaped theirs and work became a place where I was me again. I can’t say the same for strangers, I wish I could. There is an odd attitude in the outside world, one that says, until you have a walking stick or wheelchair, you’re not really ill. Up to that point, you’re a slacker, a fake, someone who just wants, without reason. Those assumptions grow and grow until we reach the giddy point where we’re accused of taking money from the state, so we can sit around doing nothing. Trust me, there isn’t one of us who wouldn’t rather have a normal life, where we have to earn our money, but many of us don’t have a choice.

Assumptions are painful, they make our lives harder than they need to be. I still remember the looks I got when I was able to leave my home, and venture into the city in my wheelchair. I used to go into town every Saturdays when I first got my wheels. I told Adam that I stopped going because the city center wasn’t as accessible as they say it is. It wasn’t just that, as bad as it was, there was one other thing that stopped me going, the looks. I could read their sneers, I could see the questions. “How could someone in a wheelchair, have that much money to spend on clothing and food?” I knew, because, the more bags of shopping I acquired, the worse the looks got. I was still working, I had as much right to spend my money on what I wanted as anyone else. I also heard the “tut’s” and the “sigh’s”, when they came face to face with me, blocking their way down the aisle with my chair. Not only where many shopping aisles too narrow, so were the minds of those I met in them. So if you’ve ever wondered why so few people in wheelchairs are seen in the city, well there is your answer, we’re not made welcome.

I don’t think it is too much to ask for people to treat us just as they do everyone else, but for some reason, it seems that it is. We’re humans, we’re not made of glass, we do have eyes and ears, and a brain, and we don’t want to be pitied. We know all about our reality and our futures and we would rather talk about it as it is, than being told to have a positive attitude about what are anything but positive facts. That’s the one thing attitude never changes, facts are facts. You can’t wrap them up in bows and whistles, or pretend they aren’t there, and if anything is going to push us into depression, it’s all of this that I have just written about. Our conditions are often really hard for us to handle, but we do our best to get on with life, is it really too much to ask for everyone else, to just let us and do so without making it any tougher than it already is.

 

Please read my blog from 2 years ago today – 27/08/2014 – Time for action

I have a new hole in the roof of my mouth, the scab left painfully and suddenly when I was eating my lunch yesterday. It felt so big that I have to get a mirror and take a look and I was shocked, it is about the size of 5 pence piece and slightly deeper, I am sure it will in time fill in, but whatever is happening in my mouth just now, it sure knows how to leave its mark. In my entire life, I can only……

Telling the truth

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I don’t remember when it happened, it wasn’t like there was this sudden revelation or I even made a true decision about it, I just know that it happened. Some might say that I gave up, others that I saw the truth, I’m only sure of one thing, it’s not the first and I can’t prove the second. I’ve been ill for over 30 years now, most of it unaware of what was wrong with me, just with this knowledge that there was something wrong, something seriously wrong, but no one else agreed with me. I was left to just get on with life, to make the best of the way my body was and to do what I could, to make my life the best I could. Personally, I don’t think that I made too bad a job of it. When things were bad, I even found the money to go to the homeopathy hospital, but after 5 visits, nothing had changed and the money I had saved up, was running thin. I had a simple choice, get on with living or starve. Eventually, when I did get my diagnosis, I had the most amazing collection of reactions to it. I knew that I had just been handed a death sentence, but on one level, I was overjoyed because I had been right all along. What I didn’t expect was that there was no cure, no operation, nothing that any doctor could do for me, other than palliative care. I had for all those years believed that the day they could tell me what was wrong with me, would be the day they would start to cure me. When they couldn’t, I searched everywhere that I could for an answer, for even the slightest clue that there might be an answer one day, all I had to do was hang on.

I’ve been hanging on now for 15 years and not a single advance that has been heralded as the miracle cure will ever be of the slightest use to me. In fact, I no longer even read the write ups with any hope, I only read, so that when all those wonderful caring people out there, send it to me for the hundredth time, I can comment on why it won’t help me. As I said, I don’t know when it happened, or if there was a decision involved in any way, but I no longer even look for a cure or even anything that might improve how I am. More than that, I no longer even have any hope that the medical world will be able to help me, any more than they do today. I expect that I’m not alone in reaching this point, I suspect that there are many out there silently living exactly where I am. We feel we have to be silent, as we believe that our loved ones and those who don’t know us wouldn’t understand, that they might see how we feel as us giving up, but it isn’t. I haven’t given up on anything, other than false hope.

Hope is a wonderful thing as it gets us through some of the worst times in our lives, but it’s only useful when there is something to base it on and something we can believe in. I don’t remember when I stopped looking for what wasn’t there, all I know is that it was before I became housebound. Somewhere inside me, deep inside me, I woke up to a truth that had been staring me in the face from day one, reality. The reality of being given a diagnosis of both a rare and incurable condition, that the fact is, the likely hood of anyone coming up with a cure is slim, very, very slim. In the case of MS, nearly all the research and therefore all the breakthroughs are in RRMS, the one that the majority of people have. The rest of us, well we are the forgotten, the ones who if it works for RRMS, they will try it on, just in case it might help, but normally, it doesn’t. Right back when I was diagnosed, they said there was no point putting me on any of the MS drugs, as not one of them would help me. It took a long time for that reality to reach my brain and when it did, I felt I couldn’t talk about it.

How do you tell those who love you, that your no longer going to even bother reading any of those sites who claim they might be able to help. That you don’t even want to hear about drugs they have just discovered that have helped some others in tests. In fact, you quite simply want to scream, when you hear it on the TV because you know without hearing anymore, that the truth they aren’t saying, is it won’t help me. Once any condition has been in your body for 30 years, once it has taken you to the point where you are housebound, in a wheelchair and have lost control of most of your insides, there isn’t time. Any drug has to go through years of testing and development before, it would even reach the likes of me, and I don’t have all those years to wait. That’s the reality that too many of us live with in silence, because if we were to say it, whoever heard it, wouldn’t hear our truth, they would hear “They’ve given up”. Well, I haven’t, just read my blog and you will know I haven’t. Giving up is something totally different. This is about living without false hope, about living with the truth and being at peace with it.

It took my many years, right up until the last couple, for me to feel that I could talk freely with Adam about all of this, without him taking it wrongly. I used the news of some “breakthrough” that was announced on the News as my root into the conversation and because he could see both my anger and my feelings clearly, he also saw that I was still fighting but with real life, not some dream that might never come near me. I get angry every time some announcement is heralded as the possible cure for any condition, it makes me angry because, without a doubt, it will build false hope in so many. To me, that is cruelty, especially, if it were to be heard by a child of someone who is dying, they wouldn’t understand it at all.

Trust me, if my doctor phoned me today to tell me that there was a new drug he wanted me to try, I would, but I’m not holding my breath. I’d rather enjoy the life I have, for as along as my body will let me. Free of worry, free of searching and free of all false hope.

 

Please read my blog from 2 years ago today – 16/08/2014 – Video’s, tricks and talk

Well, that is it done! Yesterday went rather as I expected, it took far longer than they said it would, that was one thing I was prepared for, I had it worked out in my head as taking about two hours and Sophie was here for two and a half. What didn’t go to plan was that her video camera died after 20 minutes, the other hour and half was recorded along with lots of note taking. Although it was all for this new…..