Morse code anyone?

I was lying there wishing with all my heart that I had paid attention to those stupid things they tried to teach us when I was a girl guide, not once since then had I even thought about understanding Morse code, but last night, I really wished I had. I have put up with Tinnitus for years, living with the wildest mix of sounds that anyone could imagine, from road drills to high pitched squeals and on through white noise and blue bottles living in my head, but as far as I can remember last night was the first time I had found myself listening to Morse code. It was identical to what you would expect to hear on an old black and white cowboy or war movie, distinct dots and dashes that sound totally random yet you know mean something. I am sure if I did understand, what I would have translated would have been nothing more than total jibberish but it was there and so convincing that I was angry for wasting the one opportunity I ever had of learning it. Recently, I have developed a new habit, I’m not sure if it is a good or a bad one, but what it is, is an interesting one. Anytime I find myself locked on to some symptom or another, I now go straight to Google and type in “MS….” followed by whatever it is, I used to do it years ago only to draw a total blank after blank, building up not the knowledge I was seeking but just more frustration at a so-called information highway that told me nothing.

When I was first diagnosed, in fact, to be totally honest for several years before that, I had been trawling the net looking for answers and very rarely finding anything. The sites I found about MS in those days were totally sparse as to what they had to say, I think there was a general code that medical information was kept to the totally provable and totally clear cut, which, of course, meant that subjects like MS and Fibro were all too often just a footnote. I already was overly aware of the main symptoms, but I was searching for the reason for all the other things that were happening to my body and I was finding no help with anywhere. I became so convinced by what I read that the other symptoms I was experiencing couldn’t be anything to do with the already known conditions, that I went back to trying to find out what else might be happening. I held tightly to the fact that my GP had said to me at one point, “not everything is down to your MS.”, what I forgot to hold onto was his other statement, “I have never had a patient with MS before, so we will be learning together.” Over the past 14 years, the internet has totally changed and the information out there now is amazing. I remember writing a post about the horrid nausea that I had been suffering with for years and I suddenly started getting messages on Twitter telling me that it was very much part of my PRMS. I had undergone treatments so server that I even landed up on a gastric nasal tube because no one could work out why I couldn’t eat without wanting to throw up, there it was, in black and white, nausea is part of MS and I had been put through hell for no reason. Not the treatment, that was needed, but by once again being made to feel like I was a liar and for some odd reason I was making the whole thing up, I knew I wasn’t, but the doctors didn’t seem to. I was so surprised by what I found that I started to check other things and yes they too could quite easily be down to my PRMS as well, it quickly became a new part of my life that with each symptom I wasn’t sure about, I checked it online and more and more slotted into place.

For years now I have been blaming myself for my Tinnitus, all those years working as a DJ and spend more time than was good for me to around live bands, latterly loads of Thrash and Death Metal ones, well it’s bound to have an effect and Tinnitus seemed like a fair swap. Something triggered me to just check this one too, to see if there were any links there at all or if my conclusions were a 100% correct, I was shocked to find that yet again, this is another thing that could be caused my PRMS. I still think that the likely hood is that my working as a DJ is the most likely explanation, yet here I am again looking at something that in the past I would never have had anyone tell me might have two possibilities or even an explanation at all. To date, I have always been overcareful when it comes to what I find online for a lot of reasons. I honestly believe that self-diagnosis is a dangerous thing and a road to be avoided at all times, but I am also realising that once you have a diagnosed condition that we still have to take the initiative and stay on top of what information is available, regardless how many doctors roll their eyes or snigger when you mention that you have read something online. The more I am finding out, from both the official sites about MS and through discussion boards the more I feel I have been treated really quite badly at times, simply because of the lack of knowledge from people within the NHS who don’t specialise in treatment of MS. If my doctor had known that nausea was part of my condition, I would never have been sent to gastro when I found eating almost impossible and when gastro couldn’t figure it out, I wouldn’t have been sent to see a shrink, who surprise, surprise, couldn’t work it out either. It was me who eventually found the fix by accident, remove the excess stress, my PRMS settled down a little and I was once again able to eat again, if only little and often.

It is hard to know just how much of our health we have to investigate for ourselves and how much we have to leave in the hands of our doctors. I know the doctors would prefer that we just sat back and left it to them, but no doctor can know everything and I am totally sure that they all too often find themselves facing a patient who is as far out of their comfort zone as any knowledge of Morse code could have translated what I was listening to last night. I for one am now going to be much bolder when sitting there describing what is happening to me and not shy away from explaining what I have discovered, what I need to do more though is not tell them how I know and just make it sound as though it is something everyone with PRMS knows. Maybe bravado even has a place in the consulting room as much as it does in any other situation awkward situation we find ourselves in.

Read my blog from 2 years ago today – 19/04/13 – Changing your mind >

That silly headache is still around, it’s intensity has reduced but it isn’t happy to leave yet, this dull ache is actually in itself draining, it makes you want to curl up and do nothing although that isn’t going to help at all. There are many days that I feel that way, that just lying there curled up in the dark, warm and safe


I woke this morning from a half dream, pulling at first at my duvet cover, trying in my muddled state to separate the sleeve of the top I wasn’t wearing from the table in my dream. I woke because this is so similar to dozens of dreams I have had before and muddled or not I recognised it, waking enough to stop myself and pull my arms back under the cover, I wish I hadn’t. When I next woke it was because I had just dreamt that somehow I had peeled a complete fine layer of my little finger nail and I was trying to give it to someone, but I had dropped it, once more I was picking at the duvet cover. It wasn’t until I had eating my breakfast that I realised that I had ripped my little finger nail on my left hand at it’s base and nearly half way into the nail. My much loved long nails, now has a problem nail, repaired with super glue, but until it grows out, it will remain a problem. I had managed it, even in my sleep, because it has grown in a really odd shape, thanks to my typing, it has this twisted shape, where I have constantly put it under pressure, especially when copy pasting, something I do a lot, from twitter to spreadsheets and back. I was warned when I went on the morphine that they often produce vivid and worrying dreams, for the first two years there were none, then suddenly at the start of year three, these stupid dreams before the alarm goes off started, not every morning, just occasionally, but I am so used to them now as they always involve something that requires me to be picking something up, which always turns out to be glued to something that I have to separate it from and the duvet is always the victim. I think it is the fact that they causes a physical action and aren’t just in my head is the part that I find most worrying, who know what I could actually land up doing.

Yesterday had passed pretty much as it had started, until I had my nap, at that point I decided to take another booster and try again just to get a little peace. I know that most of what I had gone through since Thursday is down to the kick back from my visit to the Dental hospital, this is all down to going out of the house and being stretched to my limits. I remember when I was chatting to the consultant and when I told him that going out was going to knock me for six for several days, he looked shocked, it was then that I felt that he started to take more interest in what I was saying about alternatives and ways things could be improved. I honestly don’t think that any doctor who hasn’t had someone with a condition like MS in their care, has the slightest idea of how their everyday requests, are our everyday nightmares. Most of Sunday was just as I had written about Saturday, sometimes my life is just too predictable, mind you pain and exhaustion are very much the same regardless of the day or reason. The combination of the lift in morphine and spending some time lying down seemed to make a difference, at least my gut had shut up and sitting wasn’t a constant twisting a shifting process, just trying to find the impossible comfort. Right through until about 7pm, things felt more normal and I was grateful for just getting a break. When I shifted myself to the settee so that I could see and not just hear the TV, the way most of my so called viewing is done, I once again found myself in pain. When things are frantic like they are just now, I should have been prepared for it to get worse again, the settee is just that little bit lower and to reach the table I have to hunch forward, something I do a lot, as it’s actually easier to breath in that positions, but it puts pressure on my internal bits and they don’t like it.

Settees are another thing that should really go on that list of thing we buy for all the wrong reasons, ours admittedly needs some work done on it, the type of work that if I were still working would have been done years ago, but when it does get done there is an extra item I now want changed, the hight, I want it raised by two inches. Even one inch would do really but a lift in hight would mean I could once more sit on it without being crunched, regardless of my position. I have like most of us I suppose noted that all the seats that older people choose to sit on are always higher than the modern shapes, I always thought that it was purely down to pain in their hips and knees when it came to standing up again. Now I understand that there is much more too it, yes joints are an issue to them, but I am sure that part of if is their muscles wasting, I can no longer get off the floor without an array of things to hold onto, so I know all about that. The settee has the same issues as the floor, even though it is considerably higher, I still struggle all to often to find the strength needed, it is no longer a fluid and elegant process in any way, shape or form.

That last sentence set me thinking, I can’t actually think of the last thing I did that was elegant, probably it was some fluid turn that I made in my wheelchair, I had become quite nifty in my use of it, but that’s how long ago it is. Elegance and PRMS, in fact any form of MS, don’t go together. I always made a point though that I didn’t let myself look like an invalid, I wore all the mad clothing I had worn all my life, tiny mini skirts included, wild hair and perfect make-up. Walking with a stick or sitting in a chair wasn’t the end of my being able to be me. I will take that back just ever so slightly, I did slip badly before I had the chemo, but everything about me had slipped at the point, in fact I didn’t know who I was any longer as I was a total mess. Post chemo and I picked myself up and returned to being me and getting that second chance meant I was going to do it all with style, if not elegance. I guess we all have our own look and style but I was lucking in one way, I had always loved over the knee boots, I can hear the question marks popping, the boots I loved where black sued and with the laces at the back, perfect for life in a wheelchair. I never understood until I was myself in a chair why so many covered their legs with a blanket, I thought it was to cover their withered legs, but I soon found that it is because summer of winter, your legs get cold. When you aren’t walking and your not using your muscles, legs get cold, add in the air being thrown at them flat on as you move and they chill further. High boots were the answer, just with tights in the summer and socks in the winter, I always wore flat heeled shoes, being taller than Adam I preferred not to make myself even taller, so getting in and out of the chair wasn’t hindered either. Knee high black suede boots, black tights, black knitted mini dress and a black ankle length coat, made up what I though was an elegant look, even when sat in a chair. Yes, that was my last elegant act.

When our bodies stop us living the way we had planned, I think it is essential that we at least feel good about how we look, back then I was slim so the mini lengths might not be so appealing these days and pyjamas are my every day dress, but I still wear my favourite colour every day and the splash of my waist length purple hair, just helps to make me smile. Elegant in action, I may not be, in fact floundering, wobbly, stagger lurches are closer when it comes to my actions, but if you have those touches of who you once were, they make all the difference.


Please read my blog from 2 years ago today – 10/11/12 – Talking shorthand

Although I won’t be attending I have received the invitation to Teressa’s wedding and it shows one of the few things that her Father and I ever had in common, the invitation is a card version of the Tardis. She may have spent the majority of her life abroad but her love of Dr. Who and all other……

It’s going to far

I almost made it through to a full nights sleep, 7:00 am and I was woken by a strong spasm in my ribs and once awake I knew I had to go to the loo. Why is it that the second you wake you are aware of your bladder, yet you know perfectly well if you hadn’t woken, you would have slept on totally unaware? Apart from that the first thing I noticed when I put a toe outside my duvet was the blessed feeling that I wasn’t stepping straight into a blast freezer, having said that now I am beginning to find the house just that bit colder than I would like, as always I felt it first in my hands, from where it slowly spread. I can’t say what has aggravated them but I am getting no peace this morning from my intercostal muscles, they seem to be set into a long train of spasms from which I expect over the next couple of days to see the bruising darken again. I have been keeping an eye on all the bruises around my ribcage, well mainly on my right side the ones on my left side seem to be further apart, but what I have noticed is they aren’t quite as permanent as I thought. The don’t ever go away but they do fluctuate in colour, becoming paler when things are quiet and darkening up within 36 hours of the muscles attacking me again. I am guessing a bit here, but to me, that means the damage is deeper inside than I thought as the blood that makes up the bruise is taking so long to reach the surface of my skin. I was in the kitchen making my breakfast when one of those spasms hit, this time very much across the base of my sternum, there was one point that seemed more painful than the rest so I put my finger on it so that I could walk to the mirror to see if there was anything there to see, but as soon as I touched it, I felt a small but hard lump, protruding from the edge of the first rib below my sternum. It felt no bigger than the surface area of the index finger that was above it, but it was a lump and it was caught between muscle and bone. There was nothing to see and as the muscles relaxed, it vanished, no matter how far I pushed my fingers into my stomach and around my ribs, I could find nothing.

If it wasn’t for the fact that I am good at odd lumps, some that even my GP has sent me to the hospital for investigation, only for them to vanish before I got there, I might be worrying, I’m not in the slightest. I started finding Ganglion cysts, so many years ago that I can’t actually place their start, at first, they were where they are most common, in my hands around the joints and once the doctor told me what they were I stopped going to see him about them. In the olden days, they used to hit them with the family bible, not because they thought they were evil, but because the family bible was big, heavy and available. They are nothing but fluid filled sacks that grow on tendons. The last one I went to the doctor about was in my neck, a more unusual position, but I now have several, none visible but clearly there to the lightest touch. What I found this morning is identical and as I can only find it when the muscles push it into range, mirrors a couple of others. I guess the funniest lump I ever found actually managed to disappear right under my doctor’s hand, he was checking it for size and so on, when it just vanished, he concluded it had to have been some kind of blockage as it was in my breast, all I was thinking was thank god it waited until then, as I would have felt so stupid saying I had a lump that wasn’t there to be found.

I find it actually quite funny these days when I think back on the things that I have, like millions of others, turned up at their GP’s surgery convinced that we were dying because of, when in fact, all those aches and pains, the spasm, the loss of balance and everything else that I stopped going to see them about, is actually the thing that probably will kill me. Well unless my body has some other trick lined up that I am yet not aware of. I don’t really now understand where our fear of cancer has come from, if you look at the facts there are a million of other things that will be far more likely to end our lives before cancer gets a chance to even have a look in. I can only guess it started because it was suddenly in the public eye, although it’s documented back to the ancient Egyptians, I doubt it was a commonly used word until the last century. If I had to make a stab at it, I would say it was when they linked smoking to cancer and then they linked almost everything else that most of us have probably been in contact with at some point in a normal life. If there was one thing that I wish doctors would stop doing, is trying to scare us to death, we die quickly enough without their stories and that they actually focused on the real killers, like heart attacks and strokes, still the biggest killers worldwide.

Someone said to me the other day that they had found it really hard to find a doctor who was interested in treating the ill, rather than being totally focused on this modern fitness drive. On one level, that of a person who is ill and needs their help, I couldn’t agree more, doctors do now seem to be totally focused on prevention and not on treatment. That is wonderful for those who are still well and I really hope they never become ill, but we, the sick are still here and all the fitness drives in the world won’t make us well. What I keep hearing on TV these days about how it is up to us to stay fit and healthy and how obesity is totally our own faults, does nothing to improve how I and I suspect millions of others feel about their spreading bodies that can’t be exercised. There is nothing in this world that I can do about avoiding a future of possible diabetes, heart failure or strokes, yet daily I hear over and over that it’s my fault. As I said yesterday, it’s bad enough seeing it, without being told wrongly that we are to blame, we’re not. I am strong enough as a person to brush most of it aside, but on my bad days, well I admit it doesn’t help hearing it again, for those who are really struggling with depression, I can only imagine what it does to them. It often feels like those of us with chronic health conditions are being brushed under the medical carpet, with them just waiting for us to disappear as we are making their result tables and offices look messy. I don’t get that attitude as unless there is some major breakthrough that isn’t visible yet, chronic illness will continue even after they have the majority running marathons, not smoking or drinking and living the perfect life, some of us will be still sitting inside, in pain and unable to take part. Not because we don’t want to, but simply because our bodies through no fault of our own, have given up.


Please read my blog from 2 years ago today – 1/11/12 – The visit

Good morning world! don’t know why just felt like saying that. I am sat here at 9:30 in the morning all sorted for the day, hair done and everything, why? Simple, Teressa is on her way to spend the day with me. I haven’t seen her for two years, something that should change now that she is in the UK to stay but with……