How a good idea, goes bad

I don’t know if you have heard of, or if you have ever considered having your medications delivered to you in blister packs. It had been suggested to us by Laurie my social worker when we told her that it was one of the many jobs, that Adam has taken on. I asked him to, when I realised that I was making mistakes, I frequently missed taking one or two different ones, for anything up to a week or longer. I had also been finding dealing with the doctor’s receptionist and even the chemist both difficult and confusing. He has been running thing perfectly, since the chemist, showed they were totally incapable of the simple task of ordering the correct drugs, at the correct time. They had been my first port of call, as I really didn’t want to give more work to him, than needed. No matter what I wanted, Adam took on the whole thing, ordering, storing and dispensing them into small plastic cups for me to take throughout the day.

When we heard that the chemist could split my drugs up, presenting them in time slots for each day, I thought that we had found something that might just work, where my earlier plan had failed to. At this point, we hadn’t seen the pack and to be honest, knew nothing more than the basics. Both of us made an assumption, that we would still order my drugs, the chemist would continue to collect the prescription when we asked them to, then they would make up the packs for the next two months, and simply deliver them all at the same time. Clearly, some drugs couldn’ t be in the pack, some because they are to be taken when needed, others, as they need to be placed in water. In general, we thought it was a good idea.

then yesterday morning, I had a somewhat confusing phone call from the chemist. As expected, the results of my blood test showed that I do require to be on the potassium tablets, they were putting together the prescription as we had requested. Adam had also ordered another drug and on that prescription, it said dispense weekly? It had something to do with the blister system, and I quite simply found myself confused. I didn’t have a clue what they were talking about, so I asked Adam to drop in on his way home and find out exactly, what the blister system entailed.

When he came home, he was armed with one of the blister packs. empty of course. He also had a full picture of how it all worked. Apparently, we would once more be handing the whole thing over to chemist. They would order the drugs as needed, (unlikely), split them into the blisters and deliver one pack every week. Before he told me all of this, I had spotted two huge problems, with the blister pack itself. The pack looks somewhat like a book, when open, it reveals seven rows, of four small square containers, into which my meds are supposed to be placed, then sealed with a paper cover, which you burst to get the pills out. The first problem was clear, the containers would only take a few pills, not anywhere near the number that I take in the morning or in the evening. The second, the container are so small, that I would have great trouble getting them out, without sending them all over the place. I manage already to find myself searching the floor, for pills that I drop. I am quite sure, that I would be doing so daily with those packs.

Then there is the problem of finding the trust, that I don’t have in the chemist to actually get it right. I would be having to put my trust in someone who has already proved, can’t get the ordering part right. On top of all of this, there is the annoyance of having them come to the house once a week to deliver the packs. As it is, they can’t give me even the slightest idea of the time that they will be calling. I find it annoying enough, that they come here more than once every two months. The comings and goings of the district nurses and my carers are annoying enough, and they at least give me a one hour period, within which they will arrive. I frequently don’t answer the door, unless I know someone is due. It is rarely for me and the energy that it takes going back and forward to the hallway, is draining. I would be doing it all day long until they arrived. That kind of agitation in my day isn’t something that I deal well with. I try my hardest to keep my day’s stress-free and although it may sound like nothing to most people, it is enough to both wear me out and leaves me in not the best of moods.

I can see that the packs may work well for some people, but they simply aren’t for me. Adam has equally put the idea down firmly. I could see it in his eyes and hear it in the tone of his voice, even as he was giving me the details of how the system works. At first, I thought that he wasn’t wanting to let go of the job, he truly likes doing things for me and the whole idea of caring for me appeals to him. Almost everytime that I have suggested a way of doing something, so that it wasn’t going to take his time, he has gently fought it. In this case, though, he actually had good points to put forward, as to why it wouldn’t work to our advantage, not just his. It can be a very hard tightrope to walk at times, as he simply doesn’t see that those suggestions are meant in a caring way for him. There will be a time when he will have to care for me, almost constantly, so for now, I want him to have his life, one not totally cluttered by me. Although I know he sees it totally differently.

I know that I have said previously just how difficult it was to accept help from outside carers, to begin with. It has become easier, but I do still find the help that Adam wants to give me, in some ways even harder to accept. It’s not because I don’t want him helping me, it really is because I don’t want to burden him with too much, especially when there is another way. There is so much advice and help out there for family carers, but everyone seems to forget the problems of those being cared for, simply because we care for them. When you are in love with your carer, the difference is huge. I want to care for, protect and do what I see as the best for him, just as much as he wants to do so for me. Most importantly, I want him to have a life outside of me. No, not only his job but a life, a life where he does what he wants without constantly worrying about me. Of all the things I thought my health would bring my way, tightrope walking wasn’t one of them.


Please read my blog from 2 years ago today – 16/09/2014 – Theory is easy

Yesterday seemed to pass without much more trauma or issue, I was sore all day and even sitting was back on my list of things I didn’t want to do but had little choice over. I kept waiting all day for my body to demand that I returned to the loo, but there was nothing but pain and silence. I read through……

We matter

I read a post yesterday from a young woman who believes at this moment due to her health, that she may never become a mother. I truly felt for her, especially as to me, her post came across as almost apologetic for the way she was feeling about it. What is it in this world that makes so many people feel that feelings, whatever those feelings are, need to be apologised for. Grief is an incredibly real and painful thing to go through, and grief isn’t only attached to death, as I said to her, I know that one, all too well. Luckily, she is moving in the right direction and is not only seeking and getting help and like me, has a wonderfully supportive husband. Many are not so lucky and even more, instead of feeling it, showing it and growing through it, hide it, or worse still, dismiss it.

They used to say that the British had a stiff upper lip reaction to everything, if you believe the books of the past, to an extent that was true. It started with our so-called upper classes, who taught it in a slightly different form, through to the white collar environment, to the middle classes, and they passed it down again, to the rest of us. You would think that over time, it would have vanished by now, but there is one huge dinosaur, who has held onto it with iron fists, the business world. Those who have read for a while will know that I had a varied career over the years, but I still remember the feeling that hit me, the first time, I walked into work as a cog in the business world. That was back in the days when a business suit, was required to sit and sell on the phone. That suit meant you didn’t have feelings, and even more importantly, you didn’t have emotions. The occasional quiet laugh, but no emotions. The higher the ladder you climb, the harder that rule is applied. You can’t have emotions, as then, you might have friendships and then, how do you fire a friend. Business is filled with some of the apparently coldest people I have ever known.

When I was diagnosed with my PRMS, I remember going into my bosses office to tell her what the news was. She listened, she made all the right noises, said some of the right things, then told me to go home for a few days, “until your emotions won’t show to the staff”. That is the biggest problem with the business world, granted, you can’t have people crying all over the place, but you can have people, who are just that, people, not machines. Business can deal with broken bones, but it doesn’t have a clue, how to deal with broken people. I took her advice and I went home for a few days, then I totally shocked her by calling all my staff together to explain, exactly what was wrong with me. I felt, it was the best way to deal with it, the honest way, as unlike her, I could do my job and be a person. Mental welfare is more important than anything else, and until they learn that, they will always, be vulnerable to its side effects. Is it any wonder that working in that sort of environment, for those sort of people, means that people mentally breakdown all the time. What is even worse, is the same attitude, often goes home with everyone at the end of the day. Their boss may not be standing over them, but the pressures of the job never let’s go, and living as two totally different people, will break anyone eventually.

From childhood onwards, I had so many things happen to me, that left their scars. I had a major breakdown in my early 20’s, my brain just couldn’t take any more and it snapped. I was given a choice, voluntarily go into hospital, or be sectioned. I spent six weeks in a recently renamed mental health unit, previously know as an asylum. The name may have changed, but the buildings and the care, was still extremely outdated. Six weeks and another 2 years of learning through therapy, to not let the pressure build, or to put things in boxes, and hope they will stay there. I learned and practised that right up until the day I was sent home to compose myself, then I started stacking up those boxes all over again, because, I needed my job. For the next two years, I forgot how to grieve, I forgot to feel, to cry and to deal with everything as it happens. My health stepped in and gave me a reminder, all that stress brought on a major flare. One that landed me up in the hospital, unable to talk, breath, or eat. The mechanism that allows us to do all those things without thought, went. They were muddled up and confused, just as my mind was. Three weeks in hospital, resting and clinging to an oxygen mask, followed by intravenous steroids and another two weeks of rest at home, let me remember to feel. My boss didn’t like it much, but a new me returned to work, no longer the stuffy business person, respectfully dressed but me, with a different attitude and a defiance to be myself. They didn’t like it, but there was nothing, they could do, they tried, they made it hard for me to carry on working, but they failed.

I know that there are a few companies out there, who have realised that a happy, mentally healthy staff are more productive and have taken positive steps. But only a few. There isn’t a single reason on this planet why anyone needs to wear a suit, unless, they personally want to. Work shouldn’t be about control, it should be about cooperation, just as life should be. I know it’s all very well and good saying that your mental health is more important than any job, but when you really need that job, when without out it, life would flounder, it’s hard to accept. That is one of the beauties of being chronically ill and housebound, I can say these things, but I say them with gravitas as I have been there, and, I can also say them with sincerity, with love and a longing to be heard. Our, mental health, is worth more than anything else, as, without it, you truly have nothing and are locked in places where no one wants to go.

Every emotion we feel, is, there for a reason, so feel them. Even if they cause you unbelievable pain, that pain is short lived, if it is felt when it should be. Yes, you can hold onto it until your in an appropriate place to let it out, but let it out, sooner rather than later. No emotion is time capped either. Grief takes as long as it takes, I still grieve for my son who died over 30 years ago, but usually it’s no longer that raw pain, and it’s no longer there, for every second, of every day, it mellows. Why is it acceptable to act like an idiot, shouting, jumping up and down, smiling from ear to ear because something good has happened, but wrong to sit and quietly shed a tear when a painful memory appeared? It’s wrong and the only people who can change that, is us. Our minds matter, take care of them.


Please read my blog from 2 years ago today – 11/02/2014 – The freedom of desolation

I seem to be having some luck with the fluid reduction as my ankles are much improved, as I expected though I have three fingers on which my rings are still stuck fast. I guess they will take a large miracle……





It’s messy

I knew that I would pay for it, but not quite as quickly or dramatical as I did. By 1 pm, I was in pain, real pain, my guts were telling me that it didn’t want all that stuff, I had given it. It might have been tasty, but by then, that, was forgotten, and my emergency visit to the loo, made my memory of it, even less lovely. It’s always the same if I eat too much all at one time, or within a very few hours. My insides for over a year now has worked on the principle that it has only so much space, so, what goes in, has to be balanced by the same amount out. No problem there you might think. Wrong. My insides now work about ten times slower than anyone else’s I have ever known. From mouth to gone, takes 14 days, relieved once every two days, the final one, is normally 12 hours of a dull ache, with the odd spell of intense reminders that it doesn’t work in a straight line. But I had overloaded the system on the entry side, pain, pain, pain, then run, or, however, you translate that on wheels. Just to prove that I really don’t learn, later, I did it all over again. Cramming in four slices of streaky bacon and two fried eggs, at the time of day, that I would normally, slowly, eat a small bowl of nuts. It, didn’t like that much either. No run to the loo, just discomfort right through the remainder of the day. Oh! I love life!

I guess, that, today, has to be back to normal, routine, has to reign. I go through this kickbacks every now and then. It’s not so much a “Why me?”, as that’s a truly stupid reason, it’s more “Give me a break”. Health is relentless, days fold into each other, and time never seems to be on our side. In some ways, it is the next step on, from the picture grid on the “sticky post” on the first page of my blog. The final picture in the grid is someone lying asleep in bed, beside a table, that is full of drugs, the step on from that would be where I am now. To put it into a picture, I think would be impossible. You would be looking at a thousand different faces, each showing a different expression. It isn’t just boredom or frustration with life; it’s not depression or giving up; nor is it anger or grief; even confusion and annoyance doesn’ t cover it; as it a touch of all of them all; with a huge measure, of just wanting to scream “Let me out of here!” Most of the time, life is fine, more than fine, but then this pop’s up, gnawing away at you until you just explode inside. Despite the fact that humans are creatures of habit, we are also worn down by it. I think I can give you a glimpse of it, from your own memories. If you think back to when you were a child, and you were off school, as it was the summer holidays. It has been raining for a couple of days and all you want, is to go out, with your friends, but your mum, wouldn’t let you. Remember how that felt. Mum was the enemy, the weather, an even bigger one, and life just wasn’t fair on every level. Then to just make things worse, you asked for fish-finger for lunch, what you got was a burger. It is all those pent up childhood emotions, on steroids and multiplied by a thousand, but not aimed at the petty, it’s aimed at the essential. I’m right now screaming for freedom, not just from my home, but from everything about my life.

If I had made it all the way through the past 8 years without feeling this at all, then, I would be a truly exceptional person. The fact, that I have been here before, means that I know that it passes. For a few days, I am going to be unsettled, fidgety and desperate to do something, anything, that I haven’t done in the past 8 years. Logically, that is impossible. Right now, logic isn’t my friend, if it was, I wouldn’t have eaten what I did yesterday, I knew what would happen, but I still had to do it, just as I had to get out of my chair and walk the other day. The driving emotion was different, but the actual base feeling was identical. No one wants to feel that their life is actually a prison, far worse than it would have been if they had been physically locked up, as you can’t argue with iron bars. My bars are different, maybe not made of iron, and yes, every single one of them, is invisible, but in so many ways, far worse and I did nothing wrong. When feelings like this appear, it makes every part of life difficult, in some ways, because they are just feeling, even harder. They aren’t things that talking about, will make better. Talking is about finding solutions, but there are no solutions to feelings, their just there, annoying you constantly. Experience tells me, that all I have to do is be patient and they will calm down, become fussy and eventually forgotten.

I don’t know if it is because of my health, or if it just the way that human brains work, but, I’ve noticed that I forget quickly. If, it wasn’t for this blog, there are so many feelings and sensations that I have gone through, that I wouldn’t remember. Often when I read a back post, I find myself somewhat alienated from it, as though I am reading someone else’s words. Clearly there is recognition of whatever it was, but the words, the finer points and the small details, I will have forgotten. Just as I recognise how I’m feeling, if you had asked me to describe it a month ago, it would have been vague, somewhat beige and lifeless. Have I forgotten, or is it just my mind protecting me from the worst of everything, just holding a mark, rather than a scar?

Today, well today, is going to be about bringing back the lighter brighter me. It’s going to be about adding the colour, the depth and the vigour, I’ve wallowed too long. We all have to wallow at times, but as long as we can call a halt, turn it around and push it back in its box, there is nothing to worry about. My fatigue and pain levels are high, so it’s going to have to be a gentle kick up the backside, but it has to be a kick hard enough, to push me in the right direction. I believe totally, that every part of our health can be and is, to some extent, under our control. In some ways, the last few days prove that I have stopped doing what I should and I’m paying for it. Mental or physical, we play a role in just how bad or good things are. I know all about relaxation, posture and mood, each plays a role. I dropped them all a few days ago and it time to pick them up again, it’s time to work on putting things right. That’s the problem with wallowing, as much as we need to do it, it’s hard work fixing the mess that the mud makes. It won’t be instant, but the wet-wipes are now out.


Please read my blog from 2 years ago today – 20/11/2013 – More on the list

Yesterday’s surprise of getting an earlier appointment wasn’t the only one, not long after I completed my post the phone rang and it was a call I had been waiting 4 or 5 weeks for. I have called the practise…..

Dangerous or not

The past, is a place that I try not to go, well with a life like mine, it’s safer that way. Just occasionally, though, there is no escaping it. The TV may be my greatest companion, during the day, but, there is a danger, in watching the types of programmes that I enjoy the most. They fall generally into three categories: History, from stone age through to the end of world war two; Medical programmes, both real and soaps, often too close for comfort, but they say that there is comfort in the familiar; Police and murder stories, mainly the true ones. So which was it that triggered my problem? Well clearly not the history one, I’m not that old. Medical stories, often upset me, but not this time. So that leaves only one, it has to be the murder stories, but clearly, I haven’t been killed by anyone. What got to me was a story of a woman who put her trust in someone and even fell in love with them; only to find out later, they weren’t the person she thought they were at all. I had been in a relationship that ended only two months before I met Adam in a night club, and we started to see each other. At first I thought I was imagining it and I brushed it aside, but I had seen my ex in places he had no reason to be. Adam and I kept bumping into him, where ever we went. Then on the night we got engaged, one of my friends was chatting with Adam; he told him he was surprised that I had ever gone out with my ex, as he had been in jail for kidnap. He had kidnaped his ex-girlfriend because she split up with him, apparently, my ex had told him one night when he was very drunk; my friend, of course, assumed that I knew. I hadn’t known anything about it. He had always been secretive about that whole period of his life; there was just this void, that made no sense. When I pushed him, he got angry and abusive, so I stupidly chose to just ignore it. I once did speak to his mother about it, she too wouldn’t tell me, just said “I think it is up to him to tell you if he wants too”. We were together for just over 3 years, I ended it. Like most relationships, everything had been fine to start with, but his attitude and behavior changed, until one day, I couldn’t take anymore and told him to leave. He wouldn’t go, so omy friends Jake piled all his stuff in his van, drove the 30 miles to ex’s parents house with a message to tell him, never to return.

Adam and I had moved in together once we were engaged, but despite only telling a select few people where we were, he found me. He had worked for the electricity company and used their database to track me down. Just to let us know that he knew, he sent me a birthday card. Being stalked is an odd experience, especially as I now knew about his history. He stalked me right up to our wedding day, I didn’t see him that day, but others did. Some of my friends went as far as to stand guard, at our wedding reception, just, to make sure, he didn’t turn up there too. In the story, the girl in my position wasn’t as lucky as me, she didn’t land up married, she landed up dead. The programme was spookily close, thought, to my story; it was even set on the rock scene, exactly the group, both Adam and I belonged to at the time. Her ex also had a history of stalking, kidnap and violence, she didn’t know about. The whole thing was compelling and extremely upsetting. No names matched and the locations where different, but the narrative was too close to my truth for comfort. I had the feeling that someone had been writing my life story; with that standard line attached; “Names and places have been changed to protect the innocent”. If it had been fiction, I doubt that it would have got to me so much, but this wasn’t fiction, it was all true. I guess, it must happen to people all over the world every day, and it was just my turn, to be the innocent victim of a TV programme.

When I imagined being housebound, I always had this idea, that the past would be a place, I would spend a lot of time, but it hasn’t worked quite that way. Long before I had even met Adam or even the ex I just told you about, I started writing my life story. I had so much pain, and so much hurt to get rid of, that I thought writing it all down, might somehow put it all in perspective and help me move on. It was a very long a slow process, as I only wrote when I felt strong enough. I had told myself; that there was no point writing it; unless I was going to be totally truthful and included all the details, even those, I didn’t want to even think about. By the time Adam and I married, I had managed to get it almost up to date, I just had the last 8 or so years to go. Compared to the rest of my life, that part was a cakewalk, so I wasn’t too worried about dealing with it. Somehow, when you are happy, probably the time that we should deal with the worst aspect of our past, we ignore them and stay in that happy zone. It takes those bad days, for us even to start picking at past scars, once we have them open and they are bleeding, then writing about them is easy. About a year after my diagnosis, my writing was complete, but oddly, I didn’t feel any better. It was all there in front of me, but it was also all there inside my head, as big and as black as ever.

Once I was housebound, I sat and I read it all again and as I read, I made a point of firstly trying to forgive those involved in the bad things, and thanking those who made the good things. Clearly, I wasn’t doings so to their face, or even on the phone or in a letter. Some are long dead, and most, I wouldn’t have the first idea of how to find them. It was all done inside me, where the pain lived. I also did something else, I deleted each section as I went along, until there wasn’t a single word left. So OK, the memories, their stories and how I felt at the time is still here, but the power of those people, that they had at the time and still had over me, to that very day, was gone. I know that I have written about forgiving before, but not once have I written about the process that I used or how I made it work. There was something about that act, the deleting of my words, something I know is only a symbolic act, but that action, made it feel real and it finally did put my past to rest.

I honestly believe, that if I hadn’t done all of that, that my story today would be a very different one. When you have time on your hands, which clearly I do, the past does find ways of sneaking into your life. It doesn’t always take something as dramatic as a whole TV programme, just a few words, or a voice that sounds familiar, is all that it needed. Yes, I still have bad memories, but that is what they are, nothing but memories, just as they should be. I can though see, how someone’s life could become nothing but a mire of pain, one that is impossible to escape, especially if they don’t have anyone with them. We don’t exactly have a future, yes, we have years ahead of us, but that isn’t the same as a future. The future is an unknown happy place; a place where we all hope, that our lives will be better than they have been, no matter how good or bad, they have been. My future isn’t ever going to be that, my future, isn’t even going to come close to that. Once you are in my position; all you really have; the only place, where things were better than now; is the past; but if much of it wasn’t better, what you have is a minefield. It is all too easy to be somewhere wonderful in your head, then suddenly by accident, you fall in this huge pit. Those pits are still there, but at least now, they are lined with a bit of cotton wool and a ladder to get back out on.

It is a mistake, for anyone, to think that the worst thing has already happened to you when you became chronically ill and/or housebound. The biggest danger we face isn’t our condition, it is our own minds. You don’t even have to have a good imagination; if you own a brain; it has a million tricks, just waiting there to catch you out. I honestly believe, that part of the reason that I haven’t fallen into depression is my own personal awareness, of what my mind could do to me. My only defence is to try and stay one step ahead of it. To put my life, both past and present, into perspective and to do everything I can to keep myself safe from all those demons that could do me harm. I don’t have the luxury of a counsellor, or spending time with different medics, who can explain what is happening to me. I have only me to deal with the physical and the psychological, so I write. I never thought until I did it, that deleting it could have an even greater power. That programme; well; it took me back to a point in my life that held the most wonderful person, and maybe not the worst person I have ever known, but one of the scary ones. Luckily for me, I had Adam all the way through it. Going back there yesterday, didn’t leave me feeling scared, it didn’t even hurt me. I was as in control as I was the day that I deleted him from my life.

Please read my blog from 2 years ago today – 05/11/2013 – The fix it

The phone call trail eventually found me speaking to the company who have the NHS contract for all equipment supplied to the disabled. It was a ridiculous journey through the web, which actually only turned……

So far, so good

I really didn’t think that I would even get the chance to start writing today, but finding myself up and awake at 5:30 am, thanks to Adams snoring exceptionally loudly, here I am. Actually, it’s not fair to put all the blame on him, yes, he woke me, but my stomach was telling me that I needed the loo, so even if I had managed to shut him up, I still wouldn’t have been able to sleep. In other ways as well I am glad for that earlier start, although I doubt I will be saying that by this afternoon. It is just touching 8 am and I have shoved through everything I would normally do for twitter and managed to get myself ready, so whenever that Ambulance arrives, all I need is my coat. It’s really odd sitting here knowing that I have my makeup on and my hair done, and not just my normal bed head design that prevails at this time of day. I feel like a different person. The entirety of this post is going to have to be done in bits, as I grab a few minutes in between the final touches required before we go, and of course, dependent on when that is, and when we get home again. I just hope it won’t be too bitty.

Something really odd happened last night, not with my health for once, but with my hands. I have been wearing rings on nearly all my fingers for most of my adult life, but the center finger on my right hand had four completely stuck on it. The last one to go on was actually a stupid thing for me to have done. I knew before I even shoved it onto my finger that it was going to be a tight fit, but I have for some reason got rather large knuckles, which means that the even if a ring is too tight to pass over, it will still spin around annoyingly once on. When I pushed it on to my hand, I did so as a way of keeping the other three still. At first it wasn’t a problem, I could pull it off with difficulty, but it did shift. Then I gained weight, need I say more. For at the least, it has been there for 9 years, but possibly longer. I don’t think I have lost weight suddenly, but for over a week I had noticed that my other rings were spinning more freely, so I grasped it and pulled, why it came off I don’t know, but off it is. I know this is a dipsy suggestion, but, could the fact I am using my wheelchair mean that my fingers are losing weight, if not the rest of me? It’s just an idea, but it’s the only one I can think of. I haven’t seen them for years, but I am sure they will be online somewhere, but I really need to buy some ring guards. They act like a spring fitting and let the ring pass over my knuckle then jump tight, holding the ring the right way around.

10 am. I really didn’t expect this, but we are home! Hospital visit complete and without the slightest hitch, if only it was always like that. We arrived at the hospital and were seen within 10 minutes of the ambulance drawing up. The doctor was really nice. She looked not just at the one I was worried about, but several others that are on my back and one that is on my chest. Apparently, I have Atypical moles. So I was right to be concerned about it, but in this case, there is absolutely nothing to worry about. She thinks that what has happened is that it had a slightly raised edge, and that edge was caught on something and been literally lifted it off my skin. Which made no sense to me at all, as I never wear a bra or tight clothes. I am also very careful about how I scratch my back, I have in the past caught moles with my nails. The more I think about it, the more I think I have the answer. Like most people, when I first lie down at night, I shift myself side to side until I am comfy. I am guessing, that that side to side shifting has been slowly lifting it off my back. Neither Adam or I thought about it at the time, but I have been left with the concern that it is actually going to continue separating itself. I have the horrific idea that one day I will wake to find it left on the bed behind me. She did say that because my moles are Atypical, as in they have raised sections and lumps in them, that we need to keep an eye on them for any changes. The fact that I don’t go outside isn’t enough, unfortunately, it is another one of those age things. At this second, we have nothing to worry about.

I couldn’t believe how smoothly the whole thing went, not even the stair-climber was as violent as usual. We were down and back up in a fraction of the usual time and I didn’t feel sick, not even for a few seconds. I know that it was only luck, but when we returned to the room where you wait for your transport home, the crew that brought us there, were still sitting chatting to the receptionist. They were waiting for a patient to come down from one of the wards. One quick call to their base and we were also on their list to take home. I had been so prepared for the fact that we would be sat there for hours, that I was sure that any second they were going to get a call back saying they couldn’t take us on the that run for some odd reason. But, no, we were off and home within minutes, if only it could always be like that. Fingers crossed, our next trip at in November will be just as smooth.

Over the last couple of weeks, I know that there have been quite a few people concerned about me due to this blog. Firstly, please don’t worry. What I have been writing in here is my inner self, my gut reactions if you like to life. I am very aware that lately my writing has been on the dark side, this doesn’t mean I am slipping into depression. When you have led a life like mine, there is a lot of darkness boxed all over the place. In normally work on them privately, but as this one is 100% about my health, it felt right to put it here. After all, the whole point of my blog is for the absolute truth of what chronic illness does to someone. It doesn’t matter what condition you have, the physical effects of them, is less than half the story. There are so many emotions that go with it, and I hope that they have all been shown. It is one of the reasons that I began to write this. You can search as much as you like, but nearly all information available about chronic illness is about the symptoms. Even then, the majority of them only tell you the basics of them. I wanted to know how they felt, what they did to your life, the true impact, not just their names. If you read back to the beginning, you will find spells like this showing up throughout. This one, though, I admit, is deeper and darker, but the phase I am moving into is the darkest I have ever had to face. Without a doubt, one of the dangers of chronic illness is depression. I have always believed that the fact I am so aware of the dangers, having had it in the past, that I should be able to control it. I don’t doubt there will be spells of it as things progress. The idea that I can go from where I am, to my final destination without it, would be ridiculous. I doubt being bedbound, will be a bed of roses.

I have made a point of always working through whatever my brain decides has to be faced. The worst thing I believe that anyone can do with anything, is box it and nail it down, that is the start of all danger zones. Yes, I do box things, we all have to, but I never put any nails in anything. My mind is free to demand that I deal with anything whenever it wants, just as it did the other day with that unwanted image. I also make space most days to deal with those thoughts I packed away for when I had time, I make that time. It’s a couple of years ago now, but I spent several months, just going back over my life and dealing with all the anger, I had inside towards people who had hurt me. I am not the sort of person who finds it possible to hate, no matter what anyone has done to me, I just can’t do it. I can, though, get angry and I had to get rid of it, that’s just what I did. I even forgave them all while I was at it. For me, it was the best thing I have ever done, that didn’t require either money or activity, and I would recommend it to everyone. Peace of mind is a precious thing. Dealing with all that ancient junk, also somehow how, helped me adjust into my new life of being unemployed and housebound.

I have gone from independent to being in need of total support, including life support. Without my wheelchair to get me around, well I would need 24/7 care and too close to bedbound for my liking. Without my nebulizer and my other inhalers, which all have to be used at least twice a day, I would find breath harder than anyone wants. Without being able to breath, well, we all know the answer to that. Mentally, it is actually a bigger adjustment than any of the physical stuff that goes with it. It is both easy and stupid to say, just get on with it, what is the big deal. My first time round using my wheelchair years ago to get around outside and in the office was a get on with it type of situation. I could deal with it with ease, as I saw it as no more than jumping in a taxi, to get me from one end of time to the other. I got in my wheelchair to get me from one end of the building to the other. But in small spaces, or at home, I was still able to walk as my problem then was fatigue. This time is different. This time, I don’t have legs any longer that can hold me up, they collapse, disappear and leave me stranded. This time, I am no longer a complete and normal person to look at, no matter who sees me now, they will see someone in a wheelchair. That is me, that is my new normal and that is a huge mental shift, and all of that has to be in here.

I know it is painful and heavy going for some to read, but I hope one day that someone like me will be able to read it and say, “I too can get through this”, that is the point. Right now, I believe that I am stepping through all of this quite well. I have thought several times, this it, I am there and I am myself again, then my brain disagrees and bang, I’m back walking through a forest, where every tree has thorns. It’s up to my brain, not me what you’ll find on these pages, every day is an unknown adventure when these pages are opened, not just for you, but for me as well.

Please read my blog from 2 years ago today – 19/10/2013 – Finding hope

I have always had the misconception that life was actually meant to be simple, I don’t know who told me that or why I have managed to got it so wrong, but still to this day I have a small section of my mind that won’t let go of that wonderful but oh so wrong…..