A never ending circle

Building a new life is hard. Building one, when the only components available to you, aren’t the ones you want, is even harder. It’s something that we the chronically ill, have to do again and again, as slowly the things that we hold precious are taken away from us. It’s about six months now since I found myself having to give up my independence in a very personal way, by inviting a total stranger into my home, to shower me. Trust me, if you haven’t got to this point yet, it’s a huge step to find yourself taking. Going through the mental process that says there is no other option, is huge. Especially when you have someone right there in your home, who is more than willing to help you, but you just can’t take their help.

There really are something’s in life, that sharing with your husband, is one step too far. I may have been disabled for years now, but not once has Adam seen me naked, since my body fell apart and then ballooned. The last time he was in a shower with me, well let’s just say, getting clean wasn’t high on our agenda. Memories, that I prefer we both kept as they are, rather than letting my new reality, destroy them. I knew that every shower I had with someone else helping me, hurt him, but I couldn’t bear it any other way. It has taken me six months, to bring the size of that guilt, down to a manageable size, and to actually feel that I wasn’t doing it, to hurt him. It has also taken just as long, for me to not see the pain in his eyes when I back into the bathroom on a Saturday with my carer helping me. On Monday, I found a new guilt, the guilt of having someone, other than Adam, here to cook my lunch for me.

It seems to be a recurring theme, from the day I was diagnosed and realised that it wasn’t just my life, that was being turned upside down, but his too. The knowledge that my gorgeous twenty-three-year-old husband was suddenly married to someone, who couldn’t possibly be the wife, he thought he was marrying. That all those plans and dreams, were nothing, nothing but just memories of a life we would never live. All those invitations, the outings, and parties that we never went to, because of me and my health. Hardly a day went by when I didn’t feel guilty. Those days slowly stretched and became weeks and finally months. Being housebound threw a spanner in the works and I became guilty again, big time guilty, like no other guilt I had ever felt. When one part of marriage becomes housebound, so does the other. Yes, he has his working life, but little else, because he now feels guilty, about leaving me behind. Guilt appears to be contagious and every time you think you have it under control, it reappears in a new and twisted form.

I thought that when I asked for help with making lunch, that I was keeping myself safe. That I was putting Adam’s mind at rest, that nothing could happen to me when he wasn’t there, but from the day I asked for help, he suddenly came home every lunchtime, to do it himself, until that care could be arranged. Every time he came home, he said that he didn’t mind and that he was happy to be doing it. Despite the fact, that he had to rush here and back, during what was meant to be his lunchtime, his chance to relax. So now, I feel guilty for doing something that I thought was good.

When Laura arrived yesterday morning, I was pleased to see her. I had it all planned out so that I could teach her just what needed to be done, where everything lives in our kitchen and just what help I needed. I thought that it would feel good, good because I was taking positive steps. Steps that would make both of us happier, but I didn’t feel good, I felt guilty. Yes, I was happy with Laura, she’s great, everything that I was looking for in a carer, bright, friendly and willing to do whatever I needed. She made me feel safe, and she made me feel at ease, but I over all of that, I felt guilty. My wonderful, eager to help husband, wasn’t there. Without a doubt, I knew that he would be thinking of me and that he wouldn’t be feeling the way that I wanted him to, free, he’d be feeling left out.

We have talked many times about having both outside care and his care, can work together. How outside care, is about caring for both of us, giving him the freedom of choice, and me the freedom to be with other people. What we have never talked about is the guilt that goes with it. I know my husband, and without a doubt, he is going through just as muddled a range of emotions as I am. He will be hurting, that I have once again, chosen a complete stranger over him, yes, that is how he thinks, because he is human, but he will also be feeling guilty that he isn’t here and that he is having time off, from worry. Well, he will, when he stops worrying about how I am getting on with the carer. As I said, I know my husband, and I also know that he knows me, but we don’t talk about it.

Chronic illness is an emotional minefield and no matter how much you love each other, you tiptoe around those mines, in the aim of not upsetting the other. The last thing either of us wants is to tread on one, life is tough enough without that. Don’t get me wrong, we do talk about those important subjects, but when you know that the lifetime you promised to each other, isn’t a lifetime at all, then you tread more lightly. Plus emotions like guilt, well they are personal and talking it through would take more than the lifetime we have. We could talk forever, but without a doubt, our personal guilt will remain, because it’s a nasty little emotion that logic has no bearing on. Just like this crappy illness, it just has to be lived with but it has to be kept in check and occasionally written about.


Please read my blog from 2 years ago – 26/10/2014 – Drugs, right or wrong?

During yesterday afternoon I received a tweet that at first made me laugh, not because it was intended as a joke, but because of my last two posts. Two days off writing about improving understanding of chronic illness with those who aren’t actually ill and the simple changes and support that could make…..

Time rolls on

Slowing down was supposed to give me more time to rest, time to recover and to possibly feel, just a little like myself. Unfortunately, whatever is going on with my sleep patterns, is causing me to be so tired, that I don’t feel any better at all. The last few days have passed in a dozy haze, with me fighting to stay not so much awake, as in contact with reality. My mornings have been spent tweeting, my afternoons, playing card games, the simplest ones I can find as the complex ones, are just too much for me. I have been switching around between three different games of patience or solitaire as some call it. Which one depends on just one thing, can my brain stay focused on what I’m doing. For weeks now, I have been blaming it all on just my diminishing brain, but I had to admit the other day, that sleep has to be playing a huge part. I can’t remember now when I last had a full nights sleep. Every single one is interspersed with sessions of finding myself sat on the edge of the bed, fighting to wake up. Last night, I had my third incident of waking up somewhere I shouldn’t have been asleep. This time, I hadn’t even made it out of the bedroom, just as far as sitting in my chair and taking the breaks off, but I had gone nowhere, other than back to sleep.

When I am awake, I am missing more and more things, things I believe wholeheartedly that I have done, or seen, but on investigation, I haven’t done at all. It sometimes feels as though I am living in two worlds, the one that is in my head, which says everything is working perfectly and the other that says I am missing out huge chunks of reality. The only explanation I can come up with is that I am asleep, and dreaming in real-time, whatever it is I was supposed to be doing. Whatever is going on, all I know is that sleep is taking over my life and I quite simply can’t get enough of it.

I don’t know if it is going to help or not, but next week, I will be changing carer agencies, and it will also be the first time, that I am going to have someone other than Adam, here with me at lunchtime. The new agency is going to bring my first carer here on Friday morning to meet me before they even start. They have promised me a sole carer for the first couple of weeks, then they will interduce a second one, so they can switch about. That alone is so different from the first agency, this one seems to really care that I am happy with the people who will be helping me and that they are happy with me. The agency I have been with to date, couldn’t care less. They just care about making sure that someone, anyone, is here to cover the slot. They don’t see me as a person or cared about my feelings at all.

To start with, I have asked them to only be here three days a week at lunchtime, plus the two showers sessions I already have. I know I initially said that I was going to have them here ever lunchtime, but as it got closer, I became scared. Scared that I was loosing too much independence too quickly. I can have a cold lunch twice a week, or if Adam wants to come down on one or both of those days great, but I need to not have strangers here every day, not yet. Handing over your life to others is hard, no matter how much you need their help, if you’re not ready, it’s not going to help, it’s going to rub you up the wrong way. I need to take baby steps and when I am ready, I will ask for them to be here more. If my life keeps spiraling down as it is, I doubt that it will be long before I ask for them to be here to help me manage other things as well.

Being ill is hard work. It’s incredibly hard work and I know that sounds mad, but the worse that my health gets, the worse my ability to just deal with life seems to get as well. At times, the silliest things seem to get to you. It doesn’t happen often, but there are days when I look at all my meds, and I just want to throw then out the window, not into the bin, but out the window. If I put them in the bin, Adam would just take them out again. We have this amazingly boggy back garden and if at this time of the year, I launched them out of the kitchen window, they would land in the mud and would become totally unusable. For some reason, those tablets, not my wheelchair, my nappies or any of the other stuff that fills my home, all those tablets, are the symbol of everything that is wrong with me. They screw up my day, my nights and my life, but I couldn’t live without them. I resent the time that I spend stuck breathing through my nebuliser, the time I have to spend trying to swallow tablets, but instead just getting them stuck in my throat. They fill up cupboards and draws, they are everywhere that I look, because they have to be everywhere, that I might be. There are days when I feel like all my life is, one long series of drugs.

I know that I don’t have a right to complain, as there are so many people out there who have to pay for those drugs and can’t afford them. I get them all free and if I didn’t have them, my life would be hell, but still, at times, I resent them. When did I become such an ungrateful bitch? I’m not ungrateful, I am so grateful that I have them, but is it so surprising that I just want to be free of them. God knows how I would manage them all if I wasn’t housebound. It was bad enough when I was still working, but back then, I was on just a fraction of what I am now. As I become less and less able to remember, less and less able to even recognise them from each other, the more confused I become, the more I don’t want to take them. The chemist doesn’t help as almost every new prescription brings a new name I don’t know on a new box I’ve never seen before. Not because my drugs have changed, but because the chemist has sent the least expensive version they can buy. I’m so glad that Adam deals with them now, as I can’t make any sense of them any longer.

They are just an element, one that is now out of my hands, but still somehow makes my life harder. Being ill is hard work, far harder than you can ever imagine until you are living right here in the middle of it. It doesn’t matter if it’s my meds, having a shower, eating, or just trying to sleep, every element is hard work, so why am I still shocked by the fact I’m so tired?


Please read my blog from 2 years ago today – 19/10/2014 – Time to stop

I have just spent half an hour being drive mad by Twitter, there is some sort of problem with there security shut down on accounts, it keeps telling me my account has been hacked and I need to change my password, in seconds it does it again. Of course, that means you have to wait for the email…..

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…..

Progression of thoughts

I woke yesterday morning, not sitting on the edge of the bed, but slowly and through one of the most vivid and weird dreams I have had in years. I’m not going to do what most of you expect, so don’t wait for the gory and bizarre details, as there won’t be any. It’s enough to say that I couldn’t work out, to begin with, whether I was asleep or awake and that hasn’t happened to me since I was a kid. This time, I wasn’t flying or being chased by monsters, I was just there, I was so there. Is it really too much to ask for two nights in a row, where all I do is sleep, blissful sleep, straight forward sleep, two nights without something odd or distressing happening.

When I spoke to the district nurse the other day about the problems I am having, what I didn’t know, was one of the other district nurses on my team, used to be on the Neuro team. She was here today and we talked through my health in general and all the changes that I have noted in the last couple of months. I was quite sure that she was going to say the same as all the others, that being reassessed was the smartest move possible, and she did. The really good thing was, for the first time in years, I was talking to a medical person, who actually knew what PRMS was, without my having to explain all the details. I have become so used to having to explain every stupid nuance, but we could just talk. It also explained why I hadn’t half of the questions I had expected from the other district nurses, she has clearly explained it to all the others. In fact, the nurses have all surprised me at one point or another, by things they clearly knew about me, but were waiting for me to bring the subject up. I knew nurses had to know the relevant issues to their patient’s treatment, and as they are attending to administer enema’s, well how much did they really need to know. Within a couple of weeks of their first visit, I knew they had been reading the details, in fact, some really knew my details. I don’t know where they found the time, but some had gone back years.

Today, though, we just talked about what had worked and what hadn’t. There was no surprise at any of it, until, I told her that I had gone through the chemo treatment. When I had it, it was still in the trial stages in the UK, it hadn’t been given the full approval and I was considered as a Guinea pig. I know that chemo sounds scary, but honestly, it was the best treatment that I was ever given. No side effect, nothing horrid or scary other than watching bright blue liquid going into your veins, while nurses wore enough protective clothing, to enter the core of a nuclear power station, anytime they got anywhere close to it. Not only has it permanently slowed down the rate of progression, I even went into remission for about a year. When the treatment ended, it slow started again, but I don’t have the slightest doubt in my mind, I would be dead by now, if I hadn’t said yes, to being a Guinea pig. The bad news is, you can only have it once. Clearly, our chat has got me thinking, but the main topic has been, would I be prepared to be a Guinea pig again, or not.

It’s a big question, one that most never get asked. When I was asked the question 12 years ago, at that time there didn’t even seem to be a point in questioning the pros and cons. I didn’t have the slightest issue in saying yes to his first offer, but Dr. O’Leary insisted I knew every single one of them. He told me that the chemo would do damage to some of my internal organs, the one most in danger would be my heart. I still didn’t hesitate, I wanted it. I had to go through a battery of tests, just to make sure I could take the treatment before we went ahead. Clearly, I survived and more, but oddly, I don’t know if I would be so keen to be a Guinea pig again. I’ve spent much of the day thinking about it and I really don’t think I would say, yes, again, without a hell of a lot of convincing.

I don’t know what has changed, or why I would hesitate. I have run the question around in my head again and again, but every time, I hit that hesitation point and I don’t totally know why I can’t get past it. You would think that I would jump at it, just as I did the first time, but now, I would be scared of taking that step. Something keeps telling me, that unless they could guarantee, that I would go into remission, the risks now, are just too great. The whole idea of being held as I am now, for even longer than my condition would normally, I honestly don’t think I could handle that. There is one thing living with what nature has chosen for you, but totally another one, in medicine, making it worse. Don’t get me wrong, I’m not trying to hurry my way out of this world, but I have reached a point where the balance has changed.

The medical world appears to me, to these days sees the prolonging of life, as a wonderful thing, regardless of the quality of that life. It about a six months now since I set up my DNR. When I did, I was quite clear in my mind that the only thing that I was saying no to, was having someone jumping up and down on me, or attaching me to machines, that without, I wouldn’t be alive. My health has gone downhill so much in that time, that now, I feel that I couldn’t go through a treatment, that did nothing other than extending my life as is. I don’t know if Adam would totally understand, but I hope that he would, just as he learned over the years I have been ill, that a DNR isn’t a desire to die, just an insurance policy against being forced back into a life, that nature has clearly declared is over.


Please read my blog from 2 years ago today – 08/10/2014 – Being people friendly

Thank you to the two people who left comments yesterday, they both quite beautifully illustrated just how strong that feeling of guilt is, whether totally created by ourselves or fed by others. As I said yesterday it is one thing that no matter how much we try to apply logic to our situations, or we are loved, guilt just…..