It sounds like a plan

Sometimes the TV shoves things there, right in front of your eyes, which is just as frequently something you want to see, as it something we don’t want to. I doubt that many of you saw “Holby City” earlier this week, for those who don’t know, it’s one of those hospital dramas, where they show medical reality and the lives of those who work there. Although on one level it is just another soap opera, on the other, they show real life medical conditions in the most accurate way that they can. Right at the start of this week’s episode, the ED doctor said that patient had just arrived, with end stage MS. Inside me, there was this amazing conflict, the one that said don’t watch, versed the one that said, I have to see. Just to make things worse, the patient was a woman, not much older than me, who had been diagnosed about 5 years earlier than I was.

In those first few minutes of the show, I found myself feeling so many emotions and so much empathy for someone who didn’t even exist. What they showed was exactly what I knew in my heart, before I even saw her. She was unable to move or to talk, unable to do anything for herself, other than lie there and be cared for. She had gone through the stoma and suprapubic catheter stages and now, all her major organs were closing down slowly. I realised for the first time, why I didn’t fall to pieces when the doctors told me that the most likely end I would have, would be respiratory failure. The idea that my lungs were simply going to be unable to take in air, because my MS, is slowly closing down the mechanism that makes them work, sounded like a quick and painless way to go, I’d sufficate suddenly. It would be over in minutes, rather than lingering for weeks, months or even years.

The story was really about her husbands and her choices over their death plan, they had chosen cryogenics, which meant that they had to freeze her the moment before she died, not my personal choice, and not really the point of what the show made me think about. Of all the things I have thought about, a death plan really hadn’t figured anyway along the line. Yes, an after death plan, but not what happens immediately before. Until the doctors predicted my end, I did have in my head ideas of what I wanted, but they all vanished, which was incredibly stupid. So OK, they might have their ideas of what will happen, and a rough idea from the speed things are progressing , but it’s only their ideas, their prognosis, but they could be wrong, and who’s to say that I will be fit to that last second.

Whether we already have been handed that ticking clock or we believe ourselves to be fit and healthy, there isn’t one of us, who hasn’t thought about our end. When you have been handed that clock, from your original diagnosis or as time passes, we all find ourselves trying to picture just how it will be. Not one of us, picture the reality, we picture the glossy version, the one where we are with those we love and we silently just slip away, after having spent a great day doing whatever it is that makes us happy. The TV shoved right there in front of me, a picture that I had dismissed, but the truth is, it could still be my reality. Her heart stopped, my lungs will stop, not much of a difference really, and it woke me up, out of my glossy version. About a year ago, I toyed with the idea of finding out about hospices and the other option I had considered, palliative care at home, but I did nothing. Back then, it was a much more about finding out what they could do, not so much about my dying, if that makes sense. I had made this plan that I wanted to carry out in a precise order. I had to find out about, plan and pay for my funeral, before, I looked into what happened before. Then was a huge obstacle appeared, as in who owned the grave plot my son is in, and where I want half my ashes to go. That obstacle has been resolved for months, I now officially own it, but I haven’t moved past that point.

Sometimes, we create obstacles in our minds, I didn’t want to think about my end in detail, that would make it even more real than it is at this second. When the real obstacle appeared, it allowed me to stop and I haven’t started it again, not because I don’t have the money, but because I don’t want to make it real. Funerals, they happen after you’re gone, the dying bit, that is the bit we have to do and none of us, no matter how accepting we are, really want to go there. Reality says we can’t avoid it, and maybe, just maybe, if we get to know the details, if we do make our death plans, then we can move on with everything else that this life keeps throwing at us. I think it’s time that I got that plan from months ago on the move again. It’s time to contact the funeral directors, get all the documentation in place and pay for it, then I can speak to my district nurses about the bit before. I already have my DNR, now it’s time to make those death plans, one that covers all the options and possibilities. I don’t know what it will hold, or how it will look, but I have to think about it now, before, it’s too late. Then I can put it away and just live until it’s needed.

 

Please read my blog from 2 years ago today – 30/09/2014 – Getting angry

I have just gone through yet another painful visit to the bathroom, it’s 11 days since I had last moved my bowels, but I have been taking a tablet twice a day that was supposed to soften the stools and I had hoped that I wouldn’t have to once again take Dulcolax. There is nothing like having a dream is there. Last night…..

It’s my only way

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

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

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

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

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

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

 

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

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

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……

Oops, doesn’t cover it

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

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

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

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

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

 

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

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

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……