An announcement I have to make

There are so many ways of looking at life, and the shitty things that happen to us, that sometimes it feels as though we’re living in a human washing machine. When we are kids, it was oh so simple. The clouds were made of candy floss, the moon made out of cheese, and that was alright because we were kids. No one tried to tell us that we were wrong, as that the truth sounds far more mundane, but is actually far more exciting. The only people who constantly burst our bubbles were our siblings, and they so loved doing it. Being an adult means that we understand the science behind clouds and that if there is cheese on the moon, well it was left there by the astronauts. No matter how much we understand, or we learn, life just get’s more and more complicated, more and more confusing every single day. The more I think about it, the more I look back on my life, I don’t think I actually grew up, until the day a doctor told me I was ill. Suddenly, I didn’t care about any of that, I didn’t care that my final bubble had been burst, all I care about was living.

I always thought that whenever you got news like that, that it would be death that you would find yourself thinking about, but all I could find was a desire to live whatever time I had left, just as I had to that point. I put on the biggest set of blinkers that I could find, and all I could do was carry on living as though nothing was wrong. Others admired me, they thought that I was incredibly strong, I know because some made a point of telling me so, but they didn’t see the truth. If I’m totally honest, I didn’t touch those blinkers, until the day my left arm stopped working. For five years, I got on with life as though nothing had changed. I took my meds, I went to work, I had chemo, I decorated our home, I bought furniture and ornaments, filling my home with all the things I thought a home needed. When the time came, I learned to use my wheelchair and sped everywhere at full speed, but still I hid from the truth. My weight dropped to the point that I was hospitalised to have a gastric nasal tube fitted, and still I was telling myself, there was nothing wrong with me. I had flares, I spent time in hospital, I took drugs, tons and tons of pills with names I couldn’t pronounce, but in my head, I was still fine, until that arm stopped working. How do you go through all of that, and not understand the reality of what is happening to you?

In fact, I don’t think I took it in fully even at that point. Being housebound didn’t stop me from working, it didn’t stop me from living as I had done, every day up until then. I got up early, I did my work, answered all those oh so annoying emails from people I knew already had the answers, but they just wanted to hear them, from me. Life continued, unchanged in content, just changed in location. I still had those blinkers, they didn’t fall off until a year after I lost my job, and then, for the first time in 9 years, I actually stopped. It took being turned down by hundreds of agencies and ignored by the HR department of any company I thought might need my skills, thousands of emails later, I accepted that no one wanted to employ me because I was ill. Me, the person who has lived through everything and refused to stop living, was ill and I for the first time, had to face that fact. Why did it take me so long? Because through all of it, I rarely felt ill. I was in pain, I was fatigued, occasionally, at times I even thought I was dying, but every time I got better, I was no longer ill.

It’s taken me several days to write this post, because of one thing, this post is a declaration. I’m no longer just too ill to work, I’m too ill to do almost anything, even the regime I have pushed myself over the last few years to maintain. I’ve pushed myself to the limit, day in day out, I have exhausted myself time and time again, but I have kept pushing. That combination of blinkers and determination have taken me through 15 years, of living with a condition that is doing it’s best to kill me, but it isn’t working any longer. In the last 4 years, I have slowly stepped down what I do every day, and every step down has hurt. This one really hurts. Right now, I don’t have the energy to keep doing all that I do, neither do I have the mental capacity to do it either. In the last two months, I have become iller and iller and I can’t escape that fact. I’ve slowly laid out the pieces over the last few weeks, but today I’m laying it out in black and white. I’m ill, I so ill, I’m stepping it down again. No, I’m not going to stop blogging, but I am going to stop blogging every second day. I’m not even going to say when or how often I am going to write, but be sure, I will still be writing, just not as much and not so often. I don’t have the strength left to fight in this way anymore, and I need my strength to fight in the ways that will get me through the next few years. I want the strength to see the candy floss for just that little longer.

 

Please read my blog from 2 years ago today – 13/10/2014 – It’s time for an adventure

It’s one of those odd weekends that we haven’t had for what seems a really long time. Once more the admin department at the hospital Adam works in is behind on the job of scanning doctors notes to add to patients files. I really don’t get this as the NHS has spent a fortune putting all patient records onto a computer, therefore the doctors no longer need paper files when they……

As our minds vanish

Today, my mind is the clearest it has been in days. Fighting brain fog doesn’t work, any more than trying to clear a path through its namesake in weather does. The biggest difference between the two is that your eyes see fog with clarity, but you don’t always notice fog slowly filling your brain, in fact, on many occasions, it hasn’t been until it starts to clear, that I have truthfully seen it for what it was. Brain fog is incidence. It creeps into each crevice and slowly it fills them, flowing quietly into every part, while you, well, you slowly get more and more confused. Life gradually becomes misplaced, while you’re fighting madly to make sense of it. Years ago, I would see it almost instantly, but as I have generally become confused, seeing fog creeping in on top of it, has been harder and harder to distinguish. How do you tell the difference between normal madness and the madness that fog brings?

On a normal day, I can have problems just stringing two words together. I stutter and stammer as I desperately grope for the word that seconds before was on the tip of my tongue, but now that I actually want to use it, it’s gone. On a good day, I eventually find it, on a foggy one, I don’t stand a chance. You grope your way around, trying to clear a path but you can’t, as the second you sweep away an inch, ten pile in behind, obscuring everything, often even your voice. Even things that are there right in front of you, can become nameless objects. Objects that you know, but can’t describe or name. They are just that thingymajig, the oojamaflip that you use to you know, do that thingy with. Yet still, you can do that thingy without thought or difficulty, unless you actually think about it. The connections are there, but they’re fuzzy and feel flawed. Slowly you trust nothing, not even yourself, to be where it once was.

Fog has become a resident feature of my life. The clarity that I feel at the moment, is fleeting and glorious when it arrives. It is like a bright light, it lets me make sense of everything, for a short time, before the fog slowly once more shrouds it all. Fog used to be an occasional visitor. The odd day here and there, annoyingly making life tough, before normality returns. Now the balance has changed. I still call that clarity normality, but it isn’t, it’s now the visitor, the friend that drops by from time to time, to remind me what life should be like. If I am lucky, it stays for a few days, but that hasn’t happened for a while. I keep hoping that it will stay, but it’s slowly eclipsed in hours, not days. Tiredness seems to be the trigger, the door that once open allows the fog to return, and I’m slowly swallowed, consumed and eventually, once more gone.

Things changed a few months ago, exactly when, I can’t say any more than I notice its arrival. There must have been a day when the balance changed, but I don’t remember when it was. I now spend more time drenched in the mist than I do out in the light. I know in the last few months I have spoken often of my memory laps, and how they are getting worse. When you’re encased in fog, you don’t only forget what you once knew, you can’t remember what’s new. You might be there in that moment, but you see it as being somewhere else, caught in a half world, like the one between wakefulness and sleep. In that state you can’t make yourself move, well, just like that, you can’t make yourself remember either. Memory can’t be forced, it either is, or it isn’t, no half world, no options, just as it is, wrapped in a fog that swirls and changes outside of your control. Some things get through, others are misplaced, some are just fractured, but all are still there, it’s just accessing them that is hard.

Living inside a cloud means that the outside world is muffled. A bit like wrapping a pillow around your head, but you can see, hear and interact. That cloud pulls you inwards until you live inside yourself, rather than out there. unless something yanks you out to where others are. More and more you live inside your head, talking silently to yourself, cut off from conversation, from the pictures and sounds that the TV makes, isolated but still for now, still part of it all. Your ability to do more than one thing at one time diminishes. You have to use all your abilities to stay in connection with one thing at a time. That conversation, the one that others are trying to have with you, only gets through if you let it. You can’t talk and follow the TV at the same time, nor can you think while someone talks, everything has to be done in turn, not all at once.

At times even awareness slides inside and all you hear is yourself. Unlike other symptoms, there are no crutches, no wheels, no tablet, nothing that can make a form of reality others would understand, or be able to relate with. Fog is isolating, but it’s also strangely comforting. The longer you live inside it, the more you accept that there is you home, the place where you should be. I fear that slowly my need to interact will vanish, that I will find less and less need to be anywhere else, other than inside my head. I often wonder if what I am going through, might be just like the beginning of dementia or Parkinson’s. I don’t think I have either, let me make that one clear, I just wonder if brain fog, hold a similarity to other conditions, that affect the brain. If somehow, we have the eyes into their worlds.

I know that slowly this fog will take over, even more, I’ve seen it and I’ve read about it from others. Just as my body is slowly failing, so is my mind and for now, just like my body, I can see it. What happens when we can’t?

 

Please read my blog from 2 years ago today – 10/10/2014 – Pushing the boundaries

Yesterday just sort of happened, right through until I went for my nap absolutely nothing of interest or note happened, it was just a day, as I said until I went for my nap. Lying down seems to trigger so many things, but I already had my diaphragm creating pressure all around my lower ribs, so I wasn’t that surprised that the strange sensation of having a ball shoved inside my ribcage, whilst…..

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……