Finding a new way to smile

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

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

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

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

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

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

 

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

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

Every journey…..

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

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

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

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

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

 

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

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

It just keeps coming

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……

Telling the truth

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…..

Holding on?

It doesn’t happen often, but there are days when I find myself asking questions, probably the same questions I know others ask of me, but when they come from inside, they mean more. Don’t take that badly, I’m not putting anyone out there down, but we all know, that those silent questions are always the most powerful ones.

There isn’t a certain time of day, or a feeling, place or set of circumstances that triggers them, they just appear when I least expect them and without any warning. Bang, there it is, one of those damned questions. Todays appeared when I was taking my lunch out of the fridge, Vegetarian Mousaka, I wish I had eaten the packaging as it looked far better than the contains did, and probably tasted better too. I was searching for the use by date, then that question  appeared.
“What is it that keeps me going?”.
The first answer was easy.
“Definitely not the food”
Then I started to really think about it, to answer what had appeared from somewhere back there in the muddle I call my brain.

I’ve been here in this flat now for 9 years, a length of time that if you are honest, I bet you can’t even imagine spending in your home. Never going out, not even to get the air. Your world is the space you call home and there is nothing else outside of it, that you can get to. 9 years, it’s a long time. Yet looking back, I find it almost impossible to believe that it could possibly be that long since I last opened my front door, and walked out into the street. Of course, I have been out, I’ve written about that many times, those trips to the hospital, but even then, I don’t make it on my feet, I’m strapped in a chair and guarded by ambulance attendants. Those trips feel far more like being transferred from one prison to another, just to be brought right back again. But my home isn’t a prison, it’s never felt that way, my prison is my body, not the place where it lives. I guess that’s the first answer, I love my home, I love what I see daily, how it makes me feel and the feeling of safety and security that it gives me. I doubt there are many prisoners who would describe their jail that way.

I guess, I don’t really even see my body as a jail either, how can I, it’s the same one that I have lived within since the day I was born. In that regard, I’m as free as you and everyone else out there. Within my world, there is one other constant, my husband. Just like my body, he has been here throughout this phase of my life. There are two clues wrapped up in the last sentence. My husband, who to anyone who reads my blog will know that without him, I would be isolated and totally alone. Yes, there are others now, my nurses and carers, but they are new to this madness. Adam, is my one constant, the one love that lifts me through all the bad spells and makes me laugh and smile on even my worst days. No, I wouldn’t want to survive without him, but that’s a totally different question.

All our lives are broken into phases, not just childhood, teens and adulthood, as they have many, many phases mixed up within them. Some of them cross over each other, and some are totally isolated by the power they have over us. They are made up of relationships, jobs, hobbies, likes, and dislikes. Take my health, they say it started back when I was 21, but they didn’t diagnose it until I was 40, just two years after marrying Adam. During this phase I have been married, had children, got divorced, had three totally separate careers and married again, following three failed relationships. Phases, that intertwined, yet some remained separate in many ways. As we move through those phases, we grow, become more mature and have a deeper understanding of life. All of it makes us the people we are, so for me to give you, or even myself, one defined answer as to how I survive, would be impossible, but I do have many clues.

I survive because I haven’t changed, it’s my life that has changed and it did it so slowly, I grew used to where I was and the fact that I couldn’t be anywhere else. From diagnosis on, I went into a nine-year long nest building phase. I spent all my spare money and time, making our home as beautiful and as comfortable as I could. My working phase of my life overlapped the first three years of being housebound. I had time to adapt, time to adjust and I didn’t even know I was doing it. Two phases ended, but I still had the constant of Adam, the anchor that held me steady while I built the phase I’m in now. Content, housebound, writing and happy. I got here, without even knowing it. I survive because I am here and I now can’t think of a single place that I would rather be. I know that might sound odd to you, but to me, there is a logic there, as if I didn’t feel this way, I would go mad, I’d fall into depression and I would probably end it all. I survive because I have all the things that it takes to make a human happy, right here where I am. To the modern mind I know that’s hard to grasp, but to our ancestors, it would have been easy. Think back to a time when people were born in the village where several generations of their family were also born and spent their entire lives. Not once leaving for any reason, because they couldn’t see anything out there worth leaving for. They didn’t leave because they were happy just where they were, just as I’m happy just where I am.

I have become so content in the space that I live, that I can’t even tell you when I last even looked out of the window. There is nothing out there that I long to see or want to be part of any longer, why would I, as I have everything I need right here. Unlike my ancestors, I have the benefits of the modern world, which actually make it easier to live an isolated life. Entertainment is at my fingertips, the world is there too and when my health is up to it, I can join it and chat to whoever is there. I don’t need physical people here in front of me, to have company when I need it, I just open my PC and there you all are. What keeps me going is all of this, plus a lot of magic from the medical world. There is one other thing that I haven’t mentioned, and that’s a zest for life. No, it doesn’t die just because we are doing so. As my body fails me, it tells me there is still much to do and how can you give up, when you haven’t finished doing all those things still to come. I keep going, because I want to see what tomorrow will bring, good or bad, I haven’t seen it yet and I want to, and as long as I or you have that need, we will all keep going, where ever we are.

 

Please read my blog from 2 years ago today – 14/08/2014 – Too much

I hate the day before anything, be it Christmas, visits or interview, the day before is the day you wish just wasn’t there. Last night Adam was once again concerned about the whole thing, he thinks it is great that I have been asked to the interview as it shows that all I have written here is having an impact but he worries about the length of time, an hour sitting talking is a long time for me, especially……