Just a bit more

I have once again been trying to use my, ‘if I don’t think about it or write about it, it can’t be happening’ theory, as always it doesn’t work. Why it should work now any more than it has in the past, I don’t know, but I just have to keep trying, just because well who wants to listen to me moaning all the time, I know I don’t. So all I am going to say is, my guts are no better, but I have been able to eat just a bit more than I had, I guess I am stuck like this for a while and all I can do is accept it for what it is and wait and see where it goes. I did find out something a few days ago thought that has left me thinking and has made me wonder about the truth. When ever I have mentioned to my neurologist that I was feeling sick a lot of the time, he told me it could have nothing to do with my MS, but I had noticed for a long time that a lot of people with MS, were also saying they felt nauseous, so I did another one of my mega searches of the web and I found discussion board after board, with people all who have MS stating they where having or had had long spells of nausea, then I found one medical site saying quite clearly that it is a symptom and then I found yet another. I can only assume that this means it depends on who you talk to, just like it was many years ago when it came down to does MS exist or not, for once though I am happy to put it down to my PRMS as that is what I have been blaming from the start. It does make me angry though as I was put through so many tests when years ago I found I simply couldn’t eat as I felt so sick, just as is happening now, but tests that I never needed as it was as I kept telling them my PRMS, but the rest is history and all written about before.

I was surprised on one site to also find something both Adam and I are very aware of, but I never once thought it was my PRMS, poor hearing. I have been going deaf for years and I always blamed it on my years of being a DJ, not the best environment when it comes to protecting yourself from deafness. I seem to spend half my life either turning the TV up or asking Adam to if he happens to have the controls, or even more annoyingly for Adam, asking him to repeat what he was saying as I simply hadn’t heard, or what I heard just couldn’t be right. I don’t know if reading and finding out that I have yet two more symptoms is good news or not, I didn’t really need any more as it was, but I suppose being able to pin them to their correct source is better than wandering around making stab assumptions, now I just need to get my doctors to accept them as well.

Last night found me actually squealing out loud in pain, that is something I very rarely do, when you have lived with pain as for a long time, you become used to it and as long as it appears where it always has been, it rarely catches me out. Neuralgia is the only thing that causes me to suddenly jump of react, as there is nothing like nerve pain to stop you breathing and grab hold of the effected area. I had been sat earlier in the evening nursing extreme pain in the tip of my middle finger of my left hand, so intense that I would have quite happily have sliced it off at that second. It was just the tip and it only lasted about 15 minutes, then faded and vanished. I had actually even totally forgotten about it when I squealed and grabbed hold of my left hand with my right. I felt my entire body twist and curl towards it as I had never felt anything like it, even when I had the skin between my thumb and index finger pierced, I didn’t react like I did last night. The pain took over the entire index finger and thumb, right down to my wrist and although it left as quickly as it appeared only really causing pain for about 30 seconds, trust me it was the type of pain you don’t want to have. Most pains leave a residue, like an ache that is a shadow of the area effected, it usually only last a few hours and will vanish as did the initial pain. This one left behind it something I can actually still feel, not so much a shadow as a line of sharpness that runs down both finger and thumb, them up my forearm to the crease of my elbow. It is like something has inserted a wire along that course and keep pulling on it, because they can. It is also easy to imagine that happening with a lot of the symptoms our health throws at us, the idea that which ever illness it is, is this small evil gremlin type creature that takes a strange pleasure out of reminding us that it has control and what it can do to me.

It isn’t only the pain in my left hand that has my attention, in fact just before it happened I had been playing with the sensations in the palm of my hand. I had noticed in the last couple of weeks that there is an echo effect in the sensations my hand is picking up, if I drag my nails over the palm of my hand, I don’t just feel it while it is happening, I feel it just as acutely for the next few minutes as though I am still somehow in the process of pulling them over my skin, the same goes if I were to dig them into my hand, I will feel it at it’s most painful far past the time I have left it alone. Ever since the time it died, I have been playing with that hand constantly, it took me about a year of playing to get it back to the point that I could really say it was as useful appendage. Even today it isn’t more than 90% of it’s friend on my right arm, my playing with it is partly in the hope that it will improve more and partly out of fear that it just might stop working again, it isn’t the type of thing that anyone wants a repeat performance of.

I know I have asked this question before, but it doesn’t matter how many times I search or how many times I ask, I just can’t find the answer to it and I hate not having the answers. Either I don’t understand how drugs work, or I don’t understand the truth of the pain I am in. I just don’t see how I can be on such high doses of pain killers of different sorts, all designed to deal with different pains, which work with my every day condition extremely well, yet I can still feel a pain like I did last night. Either they were working perfectly and the truth of the pain from last night if I wasn’t on them would have been incredibly worse, or they don’t work in the way I think they do. I see my drugs as being a huge thick duvet that is lying over the gremlins, keeping them in the dark so that what they do, is felt through that thick blanket or not at all, or if you prefer, they turn down all my pain receptors. This though would mean that I either shouldn’t feel most pains at all, or what I do feel is a fraction of reality, so how bad would that pain have been without them, I can’t believe that my hand without anything happening to it, could produce pain that bad, yes if someone minced it for me, but not just hanging of the end of my wrist. When I watch TV and see drams set in hospitals and I hear the doctors ordering 5 – 10 mg or morphine for people who have been in car crashes, well surely someone who has 70 mg floating around in prolonged relief and can pop 10mg fast relief when needed, shouldn’t feel anything. Maybe it is a good thing that it is my doctors not me who works out what dosage I need, I just know when to take them and when the dose needs changing as the pain is breaking through big time.


We’re not all the same

As I was near the end of yesterdays post, I suddenly veered off into a new subject, one I realised was going to take more than one paragraph to compete, so here I am for once with a subject before I even started writing, weird. I closed yesterdays on this paragraph…..

Adaptations to life are the things that I find most annoying about this whole MS thing, the things that other with breeze say, “well this is what you have to do from now on”, as though our likes and dislike were irrelevant, or the fact we had tried and failed, wasn’t possible. Having any condition that butts heads with your life, seems to mean your life stands for nothing and we should be grateful that someone who knows nothing about us, has thought up a so called solution.

…. you see that is a problem that I have come up against over and over, yet I have never found a way round, or the reason we have to put up with it. Because we live in the UK and don’t have medical insurance which would allow us to get treatment out side of it, we are at times treated like second class citizens and at others as a complete nuisance. Don’t get me wrong, I am extremely grateful for everything they do for me and I know how lucky I am to live in the UK in the first place, there are countries where if I didn’t have insurance, I wouldn’t be treated at all, but sometime people need to make their point and see what happens. As I have said over and over most of the care I have had, has been great since I got my diagnosis, anything but before, but once they pinpointed it things have mainly gone well, but when they go wrong, they do so in ways that leave you feeling like you are to blame.

I have for a long time had issues with being able to eat and despite tests, the only answer seems to be my MS, in the early stages a few years ago, I was sent to see a specialist who put me through test after test, some showed nothing and others confirmed that I did indeed get food stuck in my throat for both short and prolonged periods of time. They wanted to see if my stomach was emptying and I was sent for yet another test, when the appointment arrived it came with it a leaflet explaining the process. As soon as I read it I saw two huge problem for me and phoned the hospital to check if there was a way around them. The first was that they wanted me to eat cornflakes, I haven’t eaten breakfast cereal since I was a child, I quite simply hate the stuff and I honestly don’t understand how anyone eats them, I called in hope that there was some other food that I could eat for the test to still work, they said no. I also told them that I had problems eating any large quantities, but they said all that was needed was a small bowl of them, not happy, I put the phone down resigned to the fact it wasn’t going to be pleasant, but I had to go through with it. In my head I had it sorted, I could sit there and eat them as I had when little, but big enough to get my way, without milk or sugar, just dry, it was the only way I ate cereal until I left home, then I never ate it again. When I got there it was worse than I had been led to believe, firstly the bowl wasn’t what I would call small by any means, there had to have been at least 8 large handfuls of cornflakes in each bowl, set out on the counter, I spoke to the nurse who told me they had to be eaten in 5 minutes, I hadn’t even managed a slice of bread in under 15 for months, I was ready to try, but not happy and not sure if I could manage, what do radioactive cornflakes even taste like? Them the radiographer appeared with milk and sugar, I asked if I could have them just as they were, the answer wasn’t just no, but it was followed by a torrent that implied that I was being stupid and difficult and I should just eat them and get it over with. I left.

That is just one example, I have come up against it again and again and again, not just over eating but even when I was sent to have a stress test done on my heart, when I arrived in a wheelchair and couldn’t manage to walk for more than a few yards, they were incredibly rude to me and told me it was pointless unless I was going to try. I could sit here and list and list, even down to the wheelchair department who refused to come to the house to sort out a new chair for me, when I was first housebound by my arm and I still believed that I would be mobile again, they said once I was, I should go to them. 3 years later they phoned me to arrange a scheduled assessment and when I explained they where happy to come to see me, just to tell me they couldn’t help as I was now housebound. I am still touching the tip of the iceberg, but by now I hope the picture of my frustration and disappointment with some of the so called care that I have received, nearly all of it could have been avoided with a little joined up thinking, but other parts of it scream of something else, it screams of the “this is the way it is done, like it or lump it” attitude. In the case of the radio active cornflakes and the stress test, it is down to lack of thought to one simple thing, people are different, we aren’t clones that comply with a set of plans that mean we are identical in likes and abilities. Where is the law that says cornflakes are the only food that can be made radioactive, or that treadmills can’t be wide enough to take a wheelchair.

What hurts the most about these and others is that I was mad to feel as though I was simply been difficult, or that if I couldn’t comply that that meant I didn’t need the test at all, as if I did I would have done it, even people in wheelchairs have heart attacks. Despite the NHS’s view, the world isn’t a one size fits all reality, we all have abilities, likes and dislikes, styles and personalities that make us different people. I know I have spoke about the utilitarian aids that would only look at home either in a hospital or possibly a 1970’s house, they work but do we all live in either? Please show me the person who wants to pushed around the streets, in one of those small wheeled red PVC covered hard wheelchairs they use in hospital, exactly what I was given when I was first finding it hard to walk, it took 2 years to get a proper wheelchair as I was in danger of loosing my job. The longer I have been diagnosed the more and more I have discovered this you should be grateful for anything we offer to do for attitude. I am quite sure that I will find it again in the future but is it really asking too much to be treated as an individual and for our lives to be made as pleasant as possible, despite our medical conditions.

Years ago I used to see people in wheelchairs, always for some reason badly dressed and with really bad haircuts, I made a point of not fitting into that mould and luckily these days, more and more of us are refusing to be cast in that image.


Please read my blog from 2 years ago today – 29/11/12 – The problems of winter

My whole day is going to be centered round drink a horrid gunk that will flush my guts out, 1 litre to drink this afternoon at a pace of one glass every 15 mins, of course they don’t say what size glass, I would prefer to get it over and done with so I will use……

Feeling good

It’s strange how making one tiny change in your life has a roll on effect and slowly makes you want to change other things to. A couple of months ago I decided to grow my finger nails again, for most of my life I have had long nails, rarely just painted in just one colour, but usually with a black back ground and gold patterns on top. I had been painting them like that since the early 80’s, when I discovered a gold pen with a really find point on it and the idea appeared. My first attempt just washed off, from then on I got it right by simply setting them with hairspray, then painting over with clear polish, time consuming but it made them stand out, these days no one would even notice, but back them, trust me everyone did. There is no way that I could manage anything like that amount of creativity these day, the gold would be all over the place and I doubt that I could even get one flat layer of varnish without it being all over my skin, but my nails have caused some changes. I can only guess that seeing those nails, made me feel just that bit more feminine, for seven years I have been dressed in rather baggy but comfy clothing, with nothing about them to reminded me I am a female. I think I stopped caring as I was faced daily with seeing myself getting fatter and fatter, with nothing I could do about it and as my shape changed, so did my desire to feel good about my body. The day I had to remove 4 of my most loved rings, was the final straw, yes I still have several diamonds sparkling at me, it just isn’t the same, it is a bit like when I had to give up being outrageous so I could join the business world, I was having to put away a part of me.

Something about my nails and my unexpected weight lose of three quarters of a stone, made me feel less a lump and more a woman again, the feminine side of me had been sat in a box for a really long time. So last month for the first time since I have been housebound, I actually treated myself to some face cream/serum and I started putting it on every night. I was really surprised by how just taking the time daily to massage my face with a little cream, actually made me feel good about myself. There is something so different about spending those ten minutes actually doing something for your body, than doing something like reading a book, both are done for ourselves, but only one is done too ourselves, psychologically the difference is huge. So this month I bought some more, but this is one for night time, plus I bought some cleansers to remove the residue of the previous applications and I also bought some hand cream. I know that it doesn’t sound like much, or that any of those products could change anything, other than my skin does feel softer and possibly look a little better, but they really have. I have for years recommended to others that they take time to themselves daily, it doesn’t matter how busy my life has been, I have always spent sometime daily doing something purely for myself and no one else, but this just feels so different. I think I have found the true secret behind all those facial creams that they advertise as helping to make you look younger, what they actually do is make you feel better about yourself and when you feel better, you look better. Nothing to do with what is in any of those expensive tubes and jars, more to do with belief and feelings, but a little make belief never did any of us any harm did it and if I am right, well it could do a lot of good for a lot of people.

When Adam came home last night he arrived armed with goodies to eat, there had been a leaving do at his office and there was tons left over, if there is one food style I love, it is finger foods. I would rather have a dozen tiny different foods in front of me than a plate filled with a standard meal, there is something about loads of different savoury taste that makes me want to eat, so I did. I wasn’t past the first mouthful of a tiny sausage roll before I was once more gagging and Adam was looking distressed. I seem to have huge problems with anything that has meat in them, even sausage is to dense for me to be able to get it down my throat without spending ages trying to break it down into really tiny pieces, cake and pastry have a similar effect, but usually I can deal with them. It is almost as though the nerves in my throat are getting the whole message mixed up, instead of opening my throat to let food pass, it tightens and holds on to it. I am left with only one option and that is to bring the food back up into my mouth and I can then try and break it down a bit further before swallowing again. There is one odd thing that I have noticed and that is, it is more likely to happen if I am standing up, which I was as we were in the kitchen, once I was back on the settee, it was a lot easier. It really has put me off eating meat, which isn’t really a problem as I was never a great meat eater before, it’s Adam the carnivore that finds it odd.

Eating problems are common with people with MS, I frequently find myself trying to breath liquids, including saliva and it really doesn’t work. It is another symptom that I am really not looking forward to getting worse, as if it does they will then tell me that all liquids have to be thickened. I have tasted tea with the thickener in it and although I am not a great tea drinker, I would rather die of dehydration that drink that stuff even once. Thick tea just isn’t right and I can’t imagine what it would do to my nightly gin and tonic. These days the only liquids I do drink are my coke and my G & T, so before some bright spark suggests that I drink whilst eating, I honestly couldn’t as neither go with food and I haven’t drunk water since I was 10. For now I just spend my time eating slowly, choosing foods that break up under light pressure and make my life as easy as possible and occasionally doing exactly what I shouldn’t, but life has to have a little fun in it occasionally.

Adaptations to life are the things that I find most annoying about this whole MS thing, the things that other with breeze say, “well this is what you have to do from now on, as though our likes and dislike were irrelevant, or the fact we had tried and failed, wasn’t possible. Having any condition that butts heads with your life, seems to mean your life stands for nothing and we should be grateful that someone who knows nothing about us, has thought up a so called solution. That though is a huge subject, one I haven’t even mentioned before and I think deserves a post all of it’s own, look to tomorrow….

Read my blog from 2 years ago today – 28/11/12 – Getting ready 

Trying to get through the first day of this silly diet that I have to be on for the endoscopy on Friday. When you live on a totally different diet and open the fridge to see melons, satsumas, seeded breads and salad, all that can’t be eaten……

It never ends

I can’t believe that Thursday is here already, somehow everyday this week seems to have been cluttered and so busy that I haven’t felt as though I have rested at all from waking to eventually sleeping for the night. Yes I have been having my naps, but even then I don’t seem to have brought me the relaxation that I feel I really need, somehow despite of the majority of every 24 hour period has been spent asleep, as usual, I feel as though I haven’t slept at all.

I had never really appreciated the value of sleep, as I have written many times, sleep wasn’t something I really bothered with or needed, so when I first found myself tired and unable to stay awake nearly all of the time, it was a real shock. It was always one of the things about my early flares that stood out to me and told me there was something wrong, tired wasn’t something that I as a person did, even as the mother of a two small children. Looking back I know that it wasn’t something I pushed hard enough with my doctors over those years, just saying I was tired without quantifying that normality was just 4 hours and outside that I never stopped, as I was doing what what was expected of me. I cooked, cleaned, made our clothes, wine and bear, not from kits, gardened, knitted, did all the DIY and kept adding more and more skills every year, whilst trying to bring up my family, alone most of the time, being tired was a huge problem. I still remember the first time I was crippled by tiredness and crippling was exactly what it was. I found myself lying on my bed in tears, my body didn’t have anything left to give, I honestly didn’t know how I was going to deal with my 5 month old daughter who was sat in the next room, inches from the TV, the one place I knew she was safe. I had only been up for 3 hours and I had struggled through every one of them, there were still all the nappies and other laundry to be done with no automatic washing machine, plus I hadn’t even started on the housework. Going to the doctor with my daughter and pregnant, saying I was so tired I was crying, didn’t exactly get much sympathy, I was basically dismissed, just told to slow down and rest as what did I really expect, it was the start of a pattern that went on through my life.

I know everyone is different but for me it is the one constant in my life, every flare I have ever had, included being so tired that everything was an effort. I grew used to those spells when the world was this alien place I had to deal with, where there were not enough places to sit and rest or enough people who would offer assistance when I was clearly struggling to do something. I learned to push on, to cover it up, to not let those moments where I let myself down as unable to deal, to visible or to happen too often. By the time I was in my 30’s I had convinced myself that I was a wimp and the only thing I could do was to stand tall and act like everyone else did, they had to be feeling just as I did as the doctors said there was nothing wrong with me, if they could cope, then so could I. Believe me it is so hard to function like the rest of the world when every muscle is screaming that they can’t move once more, or that if you let yourself stop for a second, you will never move again. I lost count of the times that I would reach home with tears flooding down my face, or how often I climbed the stairs to my various homes, on my hands and knees, stopping at almost step to rest. Being a DJ was a blessing, night time work for 4 to 7 hours, perfect, plenty of time to sleep when I needed it, or live to the full when I didn’t and I managed for 7 years perfectly, but age meant I had to find a career that didn’t care if I aged and I did.

Sales was at first great, I could earn what I did as a DJ and still part time hours, but 2 years in and I was hit by my worst and my final big flare before life went mad. For the first time I had to stop working, I was off for 2 months, my doctor said it was a virus, gave me painkillers and told me to rest, I knew he was wrong, but when things are at there worst the last thing you are able to do is argue. Don’t get me wrong, I tried, but when your brain is as tired as your body is, getting your point across is almost impossible. Tired isn’t just a physical thing, tired is a life thing, you name it, what ever function you want to use, is tired. You can’t think, you can’t talk, you can’t move, nothing is working as it should even your eyesight fells tired. Add in all the other symptoms and life is a growing hell, one that for me was always spent alone, so I know when others tell me they don’t have and “Adam”, just what they mean, I didn’t always have an “Adam” either. There is only one thing I would say about if having someone with you helps when you are ill or not, is it depends on who that person is, trust me some can actually make it worse. What I have learned is, if you don’t have an “Adam”, you are better off alone.

Tiredness brought on by health isn’t the type of tired that you can climb into bed and sleep off, you go to bed tired and you wake up tired. Your body may be screaming in a language you think you understand, but we don’t. This type of tired is so deep, so complete and so devastating that there is no escape from it and even worse there is no way of bringing it to an end. For about three years now I have slept between 11 and 13 hours every single day, tired or not, as I have a new definition or tired. Tired is life, every day life, I am never not tired, but there is a step up, it’s a huge step up, it when your very soul is tired and you feel like you have nothing left to give. You crave sleep, all you want is to go to bed and sleep, not for an hour or ever 12 or 24 of them, you just want to sleep forever. Note, I am not talking about dying here, I am talking about sleeping until your body actually wakes because it is awake, not because it’s time to get up, but to achieve that feels as though it will take forever. The sad thing is that life has taught me the same hard lesson over and over, and not just about being tired, it doesn’t work that way. If life worked on that simple lines well life would be easy, you can’t sleep this tired off, no matter how hard I try, or how long I stay in bed, I am always tired.

My RRMS turned into PRMS 13 years ago, I don’t think that I have had a single day since that I haven’t been tired. Tired is now my life, all that ever changes is intensity. I may have drawn the short straw when it comes to my health, but I think I am still holding onto and pulling the straw that brought my husband to me, he knows and sees and can read, just how tired I am, he can’t take it away, but he gives me a reason to wake each day, no matter how tired I am.

Please read my blog from 2 years ago today – 27/11/12 – Crossing a milestone

After yesterdays conversation with the bank I had to make another call and that was to the Doctors about the pain control issue that might occur on Thursday. My own doctor is on holiday so I had to talk to the other partner, I was ready for a struggle……


One of the things that goes hand in hand with living with most chronic illnesses is they are totally unpredictable, one day or even hour can be totally different from the last. This one annoying fact I think is responsible for our lose of friends early on in our illness, before all the other reasons they disappear come into play. I can remember quite clearly how after not showing up for a couple of leaving do’s for work, that the invites from those around the company, other than my closest of work friends quickly dried up, people just stopped asking me. I’m sure they like me were fed-up of hearing the “well I can’t say, but if I can, I will” line, followed by no sign of me at all, other than a message sent to say sorry. It is so hard for those who don’t know anyone who is ill, to get their heads round just how up and down our lives are, or how impossible it is for us to say even a couple of hours earlier if we will be able to come back out for the evening. I am sure that all of us who are ill have equally felt guilty about letting people down, or having to miss another night out, just because we are ill, doesn’t mean that we don’t still want to be part of the world. For me saying no to a party, hasn’t been an issue for a long time, these days it is more a case of doing the things that need to be done, without loosing the energy to complete it, before I even start. All those early issues seemed so huge that I honestly thought that I was having a really tough time, I couldn’t see then just how mild and how tiny they really were, to me I had every symptom and surly that was as bad as they would ever get, being naïve is something I have always done with great skill and style.

Like most people these days as soon as I had my diagnosis, I was on line reading everything that I could, 13 years ago, there wasn’t a huge amount out there, these days, well type any illness into Google and pages appear one after another, filling the screen with a bewildering choice of view points. When I first looked there were a few medical sites, but mainly the info came from amateurs, like me, but to my disappointment now as then, is too many of them put their information in a medical format, which is something that totally fails to tell the true story. So it wasn’t surprising that I could sit and tick off every symptom and come to the conclusion that I had the lot, but as I said a couple of days ago, every symptom changes, even pins and needles are now nothing like I had had ever before in my life, yes a symptom, but intensity changes everything. I am totally sure that right this second there is someone somewhere in the world sitting post diagnosis of what ever, ticking their way down a list, without the slightest understanding of what their future really holds. I for one, would have loved to have come across something like my blog, that told me everything without holding back, well I wouldn’t be writing it if I had, but I am equally sure that there are some who might find life easier at that stage not knowing, for some naïvety is a blessing.

It wasn’t long after I started on twitter that I ran head long into a person who had set herself up as the person with all the answers for those with MS. A question had appeared to which I gave my blunt to the point answer, you would have thought that I had answered telling the person to go and commit suicide, when all I had said was simple to the point truth. She went for me, sending tweet, after tweet and me being me, I answered every one. I was trying through out to calm her down and to make my point, an hour later, she became the first person I had ever blocked. Which of us was right was never established, should it be her 110% sugar coated pill, with a cuddle attached but not answering the question, or my to the point, sorry, this is the way it is, but don’t let anyone push you around approach. The person who asked the question still follows me, I have never asked if she still follows the other person as well, it’s not my business, nor have I asked her which advise she felt helped her the most, as the poor girl felt so bad about the whole thing. I guess the truth is we all go out there and stick our finger into each pie, until we find the one that we like best and that is where we take most of our information from, keeping the others around, just in case we don’t get the answer we want from our main sources.

Is there ever a right or wrong way of answering or passing on information about something so personal as health, well probably not, what there are millions of options on, is the type of person who is asking the question and what they need at that second. From the very first email that was sent, the fact that people can’t see each other and read into things, things that simply weren’t what the writer intended was clear. Sometime writing is a scary responsibility, what I say daily could be read by anyone, I don’t know their mental state, what illness they have or if they have the slightest understanding of who I am as a person. I have often feared that something I might say, might just lead someone to accidentally or otherwise, do some harm to themselves, especially when I talk about what I have done and survived, without realising it could be dangerous. I know that I repeatedly say, “I am not a doctor”, but all to often I know people also say when giving advice to others “I read it somewhere” as though everything we read is nothing but fact, advice is probably the most dangerous thing we ever give, but I am going to give some…….. Naïvety is a blessing only to those who are scared of, or aren’t capable of, understand the truth.

If you are recently diagnosed with any condition, find out as much as you can about it, at every stage, not just from doctors or medical sites, but from as many different sources you can. Read about it, talk about it and arm yourself with all the knowledge your brain can hold, even if like me you might forget most later. The more aware we are of what lies ahead, the better we will be at dealing with the now and making our futures as comfortable and manageable as possible and I’m not just talking pensions.

Those who read my blog regularly know all to well that I am still working my way through the whole process, still trying to work out what is happening, what is right, wrong or something else. All I can ever do is write about what is the now and what was the past, the future is still waiting to be discovered, I wish I wasn’t so naïve about that, but I still can’t find out the facts about any of it, we are learning them together. Today I am tired, in pain and wishing I didn’t have the shopping arriving in the next hour. I am also wishing that my diaphragm would let me take a full breath and that my guts would stop hurting and that I hadn’t watched “Holby City” last night, great show, just a little to graphic when your guts aren’t working and they happily removed someone’s as thought it was nothing.


Please read my blog from 2 years ago today – 26/11/12 – Dealing with business 

Well this wasn’t the start to the day I had expected. I was woken at 6:10 by Adam doing his pig impressions and gave up trying to either shut him up or of any chance of getting back to sleep, so I got up and started my day. Adam eventually got up and headed…..