Which is worse?

You would think that after all the years I have spent living with pain, that I would by now be used to it. Well, I am. I’m used to the pain that comes from spasm. I used to the continual ache of muscles, that no longer have the strength, to do beyond the most basic of the acts they were formed to provide. I’m used to neuralgic pain that flies through my body, without limit. I’m even used to the pain that my intestine like to cause continually when your talking of the endless ache, or even those sudden breathtaking moments, a pain simply caused by internal movement. Even the lock downs that take my breath or limits the size of each one, but somehow, this time, is different. This is no longer everyday pain, but it is now every day pain, pain without a break, or a rest, a pain that giving me no peace.

I am getting so fed up with this pain. Despite everything that I have done, everything that I have tried, and yes, going to the loo daily, I am still in pain and one that is for some reason, getting sharper and stronger. Even last night when I woke to go for a pee, the second I moved, the worst of the pain came straight back. I was up for less than ten minutes, and by the time I returned to my bed, every second of my rest had been undone, as even the unexplainable sharp pain I have in my side, that goes deep into my lung, was there. Normally, it doesn’t appear until I have been up for several hours, but not today. Probably, because I was so aware of all of it, I returned to only a light sleep for the remaining hour and a half, so now, I’m tired as well. My abdomen no longer feels like it is going to explode. The furosemide is doing it job and removing the excess fluid from my tissues, so yes, my stomach is still flatter and the pressure is less, but the pain is worse. It’s almost as though, that stored fluid, was acting like cotton wool, dampening my perception of what was really going on.

It is all too easy to acquire an attitude of, pain is pain. Every day that you live with it can become, just another day. In fact, in many ways, you have to. If you spent your time reacting to and being worried by, every pain that you felt, you would literally go mad. PRMS, and I expect, many other chronic illnesses, produces pain. Just as I said yesterday, that attitude of “I’m fine” to my general overall health, well it’s just the same with pain, normally “it’s just there”. Then occasionally along comes a new set of pains, ones that don’t belong, ones that don’t quite fit the norm. So what do you do, when it’s more than “just there”. Well, you do all the things you’ve learned to do. You take those painkillers, the ones your doctors tell you will help. You do every form of relaxation that you know of, and you tell yourself, “it’s just there”. Of all of them, oddly, the final, is the one that calms your mind the most. For a person who hates liars, I have over the years become quite proficient at them, as I seem to have also learned to believe them, at times.

I have never asked one, but I bet, doctors hate our pain just as much as we do. In a “normal person”, pain is a sign that something is wrong. In us, it’s a sign that we’re still alive. I may feel useless against this pain, but I’m sure my doctor, feels even more so. Painkillers don’t kill pain, at best, they dampen it. They bring it down to a level where we can carry on, get on with our lives, and tell ourselves more lies. Worse still, we tell our Doctors the same lies. I’ve heard myself doing it, letting the words, “I’m fine” or the equivalent of “it’s there”, rather than telling him the full truth. Why do we do it? Why do we say, that it’s better, when in fact, the better is tiny, and what we wanted was huge? If I have done it, then I can only guess that other have too, and we then wonder, why the drugs we have, don’t work as well as we’ed like?

No matter what I have done, it is now a full week since this pain changed, stepped up, whatever you want to call it. What was once an ache, now has sharp corners and because of their position, all I have to do is move, and they tell me they are there. Is it any surprise that I am fed up with it? That today, just like yesterday and the day before, all I want is peace. I’m fed up and I’m feeling useless, and I’m not sure which is worse. I haven’t known pain like this or as persistent since I was giving birth to my children. Which is, in fact, a rather fitting description of it. Just like childbirth, the worst of the pain comes in waves, but unlike childbirth, when a wave hits, it’s there for several minutes, anything up to fifteen. Also unlike childbirth, when one of those waves hit, the pain radiates out and can reach from my shoulders down into the tops of my thighs. I quite honestly, feel as though I have been in labor for over a week now and with no sign of it giving up. The mornings do seem to be less intense, but as the day goes on, it just gets worse and worse. By night time, I honestly don’t know what to do with myself. Lying down, helps, and if it wasn’t for my inbuilt off switch, I don’t know what I would do. Sleep is my glorious escape. I honestly don’t know how I do it, I wish I did, but no matter what, I go to sleep and I stay there until my bladder can’t stand it anymore.

I spoke to Adam last night about my idea for the chart, and he agrees, as it will only take seconds, that going forward, it is a good idea. So today, I have made my first entries. We decided that just doing it once a day, is all that is required, just enough to give a noted point. I have, though, changed my mind about the point in the day that I am going to do this. Yesterday, I thought that the point in the morning when I take my meds might be best, but when I take my meds, they include all my inhalers and they are going to give a slightly warped result. So, I have plumped for midday. It will fit well with everything that I do online, and isn’t going to bit into anything, and shouldn’t be affected by my drugs.


Please read my blog from 2 years ago today – 26/02/2014 – Don’t talk to me

I know this is going to sound contrived but it’s not, I still didn’t quite manage that one job I had lined up for yesterday, a shower. As all to often happens the day moved on and suddenly it was too late, too late because there wasn’t enough time left for my hair to dry before I once again had to put my head……





Facing the facts

I realised after I had completed yesterday post that I hadn’t mentioned what the Doctor had to say, eventually, about my mole. I phoned on Wednesday afternoon and luckily didn’t get the somewhat moody receptionist who I have mentioned in the past. It was to her email account that I had sent the photo’s. I did actually call back on Monday afternoon to check she had received it, as I had heard nothing. The receptionist who answered the phone had to check but then confirmed that it had arrived. By luck on Wednesday when I called back, my Dr was free to talk to me. He was apologetic, as he had asked that an email was sent to me, to let me know that he thought there was nothing to worry about. Because of the fact that it had changed, he wanted the hospital Dermatologist to check it out and had requested an appointment for me. All of which he said had happened on Monday morning, so when I phoned on Monday afternoon, she could have passed that message on to me, or taken the hint that I was seeking an answer of some sort and sent out the email as she had been told to. I had half expected the doctors response and that I would once more be on my way to the hospital to see yet another consultant. So, it’s just a matter of waiting for an appointment to eventually arrive.

When Adam was home for lunch yesterday, he mentioned that he had requested to have next Tuesday off. I couldn’t for the life of me think why he wanted such an odd day off work. After all, taking the odd Monday or Friday, allows a long weekend, but a single Tuesday is just odd. As far as I could remember there wasn’t a reason why he would want to be at home that day, but with my memory, well there might just have been. He said that it was so he was here for the appointment with the MS nurse. He thought that I might like some support when he came to see me, which was really nice, but he was coming to see me next Monday, not Tuesday, well that was what I thought. It is, in fact, another good reason why Adam normally opens all my mail or at the least reads it. I had got the wrong date in my head, it’s the 22nd, not the 21st. He also thought that it might be a good idea for him to meet one of them so that there is a note on their records that he is now quite clearly my carer. Hopefully, that will make things easier going forwards as they will at least know who he is if he needs to contact them on my behalf. I know he is right, just as it’s right that he now attends all my hospital appointments with me, but somehow someone coming to the house felt different. It took me a few minutes to get it all straight in my head and I worked out why I felt the response that I did. The flat is my domain, I am so used to the idea that this is my world and that I can cope within it, that I hadn’t even thought about the fact that this was an outsider, someone who is as likely to confuse me as many medical people do.

Every time that the MS nurses arrive, they start their visit with a questionnaire that covers all the basic things. Am I still able to dress myself? Can I prepare my own meals? How am I coping with my medication? Can I still wash myself? The list goes on and on, but for the first time in years, my answers are going to be so different. I hadn’t put that much thought into the time scale over which the most recent changes in my health had happened. Thinking about it has made me realise just how stark those changes are and how quickly they have all really happened. Our last meeting was just a year ago and it is like chalk and cheese, I have at last reached the point that not including his love and emotional caring, as I said the other day, without Adam, I wouldn’t any longer be able to cope at all. I don’t think that I have ever actually written or said that before, but it’s totally true, in one year I have gone from independent to reliant and it’s a fact that can’t be ignored. I guess that I have been playing games with myself, tricking myself by skirting around the actual facts and it is all too easy to do. Saying to myself that I have lost my independence and saying that I can’t cope are two totally different things, and their psychological impact doesn’t compare at all either. That is the equal beauty of our language and a huge danger zone for those of us dealing with medical issues of any sort.

Fact, there is always a nice soft cuddly word that sounds similar to those nasty spiky ones that none of us wants to use. It is too easy to sit here and make it sound as though there is nothing really that wrong with us when the truth is the opposite. There is also a huge difference between deluding ourselves and misleading our medics, the second could actually be deadly. As long as we are hiding the truth from ourselves, how on earth are we going to get the treatment and care that we need and probably deserve. Two days ago I sat here analysing my loss of independence. I wrote a whole post about it as though what I was talking about was being unable to change a light bulb, I just didn’t want to face the truth. It has all come to ahead simply because of my wheelchair, but that is now clearly just another symptom, it wasn’t the answer I was hoping for. Somewhere in the back of my head, I had this picture of sitting down over those wheels and the world would suddenly become shiny and new again. It wasn’t, and I have to admit that even an electric chair isn’t going to have that effect either. It will make life so much easier, but it isn’t going to give me back either my independence or my health, or make it possible for me to cope with life by myself. No matter what aids or gadgets we acquire, I am never going to be able to cope with normal everyday life again, fact.

It has never been my wish that Adam should leave me, but my measure has been for so much of my life, thanks to my first husband, “Can I really manage on my own?” Being able to answer “Yes” to that question was so important to me, that it has remained with me right through the last 26 years. Until the last 6 months, I was still able to answer it with a “Yes”, well there were a couple of tiny issues, like emptying the bins, but I was sure I would find a way around them. But for the bulk of everyday life, it was “Yes”, now it’s a “No”. I have been fooling myself in the last few months, no, “lying” is actually the correct spiky word and the true one. I was lying to myself, as the truth was just too painful for me, but I don’t have a choice any longer. I have become that person who has to be cared for, as without it, very quickly I would die. How long would it be before I took the wrong drugs at the wrong time? How long before I developed an infection because I hadn’t been taking care of myself, by washing and showering without someone to make sure that I did? How many important appointments would I miss? How would I manage having to speak on the phone on my bad days? How could I cope with dealing with people, without floods of tears or confusion? How could I clean the house? Do the washing? Sort out the shopping I can’t even lift? How would I just deal with everyday life? The answer to all of those and many more is always now in the negative and my need to no longer be on legs that don’t carry me, has just made every single one of them harder. I can’t cope on my own, full stop.

So I have said it! I have admitted it! Does that mean I accept it? Not quite yet, but I am getting there. Well, I hadn’t admitted any of it until in the last few minutes, it will take longer than that. Pouring my mind out onto the screen may be my way of writing, but it has a downside. I can’t control my brain and it often exposes things here first, then gives me the task of dealing with it. Yep, I hate my brain!

Please read my blog from 2 years ago today – 18/09/2013 – Professional patient

I took my first boosting 10mg morphine tablet, the pain in my ribs was really bad and yet again finding peace to just sit and watch TV just wasn’t there, so I took one. I couldn’t believe not just how well they worked but also the fact they worked really, really quickly! I don’t believe that I have…..

A fact or a lie

Sometimes it is easy to sit and make excuses to myself as to why I can’t do something, or why something isn’t important, both I believe are the two things that most chronically ill people do without even knowing it. At times it is the easiest thing to do, to just find an excuse to brush aside what we don’t want to do, we all do it, you, me, everyone, being ill or not doesn’t make any difference when it comes to telling ourselves the truth, we are all really bad at it. It is a million times easier to tell the truth to someone else, but when it comes to ourselves, somehow it is suddenly all right to tell great big lies, every now and then, or even all the time. I know and freely admit that when I was first diagnosed I started telling myself that I couldn’t do things that I think now I probably could have done without any danger, or ill effects, I stopped myself from doing things mainly out of fear, fear of the unknown. I can look back now and see just how much I miss out on, simply because I didn’t fully understand my illness and I was scared that if I went out that evening, or that if I started cleaning the house, I just wouldn’t have the energy to finish, or our night would be cut short spoiling it not just for me but for other. I started telling myself I couldn’t do things and I started believing it, something far worse than just thinking it.

That is the really daft thing, the more we lie to ourselves, we convince ourselves that it is fact and there is far less chance of anyone else being able to convince us we are wrong. I know now and I can now tell everyone that I was lying, not consciously, but because I was scared constantly of the outcome. At first my greatest fear was of falling in public, I had one occurrence that built that fear and left me scared to be anywhere were there were people I didn’t know. I was on my way home from work and as I was tired I thought I would take a taxi rather than two buses and a long walk, I was standing at the edge of the road and I flagged a cab coming towards me on the other side of the road, just as it swung round and stopped in front of me, instead of taking a step forward, I lost it and crashed to the ground. You might have expected the taxi driver to get out and come to my aid, but he just drove away leaving me there, clearly he thought I was drunk. One small idiot, but an idiot that fixed it in my head just what people thought, people who would assume that I was drunk with great ease, rather than thinking I might be ill, it was then that I started saying “I can’t”, when it came to being anywhere other than home or at work.

It wasn’t until I was given my wheelchair that I manage to get over that one, people see a chair and they don’t think the worst of you straight off, they at least give you a chance, most even go as far as treating you as an equal again. Unfortunately getting about in a wheelchair also has it’s ability to still say “I can’t”, but with a little more truth behind it as not everywhere is accessible, but that’s another post not this one. I know that I have stopped doing many things probably earlier than I really needed to, it only takes one bad experience to put you off trying any single activity again, were the truth probably is, it was just a bad day, you can do it tomorrow. The nasty truth behind all these lies, is they are all based in fear and they all stop us living a fuller life for that bit longer. I know longer have to even say to myself “I can’t”, once you reach where I am the lie is the opposite, you tell yourself you can, only to find yet again that you “can’t”.

My favourite lie these days is the “it’s not important” excuse, I use it all the time. I know that many will read what I write about how my health going down hill, or that I have new pain, or new symptoms and will be either silently shouting at me, or at the least wondering why I am not on the phone already to the doctor. I admit at times I sit and ask myself just that, should I not be talking to someone about this, isn’t it significant and important that I pass on these changes? But then that lie appears and I convince myself it isn’t important, simply because it keeps me out of the hands of the Doctors. The longer you are ill, the more time you have spent your life either being examined, tested or just prodded and poked at, the more you just don’t want to even talk to a doctor. Doctors become monsters and believe me you will put up with a hell of a lot, just to not have to talk to them. I don’t know where the point is that makes you eventually give in, I don’t know what it takes to make me pick up that phone, each time it has had it’s own individual trigger, but believe me it will have taken months not days, before I do. I’m not joking when I say that I honestly think I could be having a heart attack and I would still be sitting here telling myself “it’s not important”.

I don’t fully understand what it is that makes us lie to ourselves, I just know we all do it and it is far more than just a habit, it is some how much deeper and it has a true strength as when a lie becomes a living truth, that is real power.