Finding a cure

There is stress running from my neck to my hands and manifesting in my head. The truth is it’s probably the other way around, but that is how it feels. Adam was using my PC last night as there is some software on it that I can’t load to his laptop, it’s a Mac, and he needed it for some college work. The problem is that he without meaning to has moved the keyboard and changed the setting on my seat. The result is I just can’t get comfortable or get anything back where it should be. Within 20 minutes of sitting down here, I started to feel pain in my neck and shoulder. It was flowing down to my hands and before I knew it, I had a headache. So which is it, my total frustration about not being able to just sit down and my day flowing peacefully from there, without having to keep readjusting everything? Or. Pain being caused by sitting incorrectly and straining muscles triggering pain, which because I can’t relieve it, is now causing a headache? I could go around and around in that circle trying to find the truth, but on this occasion, I think it’s a combination of both. If only it were so simple to work out what is wrong with us, what is causing it and how to cure it.

Throughout my time in writing this blog, I must have discussed hundreds of different theories that are plausible, in some cases implausible sources and cures for MS and other conditions. If you check online through the space of just a single month, you will find new theories and treatments popping up all the time. Unfortunately, the worst culprits are actually the medical profession. Actually I will take that back. Years ago, their theories were only discussed amongst themselves and were printed in medical papers to prompt discussion and bring different groups together working in the same areas. Unless you subscribed to the Lancet, you never knew anything about it. These days, it has become something that the media have picked up on and are more than happy to plaster all over not just the newspapers, but also the news. The more of them that I hear, the angrier I get. Each and every one of them is building false hope for those of us who are ill. The most recent one that most will have heard of was the declaration the MS was caused by a lack of vitamin D and could even cure it. The news was full of it, people all over the world were taking huge doses, some proclaiming miracles, other declaring it didn’t work. It has now officially be declared as having no clear results to prove it has anything to do with either developing MS or playing a role in relapses. I never believed it, because I knew thanks to tests for something else, that my vitamin levels were fine.

The majority that appear on the news are always tagged with warnings that it is still in research phase or that it will be many years before it is available as a treatment. Even with those warnings, I think it is very irresponsible of the media to report in this way. It builds false hope, especially when it comes to fast moving conditions like cancer and Alzheimers. You listen to a three-minute report that all the way through is building and giving you hope, then at the very last second they tell you it won’t be viable until after you are dead. Who is that helping? If anything, all they are doing is reminding you that your case is hopeless and in sending desperate people to their doctors begging to get onto trials, that probably don’t even exist yet. I know personally that years ago when neither Adam or I knew enough about my health to be doing anything but grabbing at straws, that almost a week wouldn’t go by without Adam trying to convince me that there was this new cure or that new cure. I could always hear from the tone of his voice, that he had already emotionally invested in the idea. He saw it as our hope and our answer. Life had already taught me to be more sceptical than that, but he had a few years to live before he too had joined me in that “OK, I will wait and see” position. So far, none has moved any closer.

There is, unfortunately, a fact that most of us who have been ill for many years, even if they did find a cure tomorrow, the chances are that it wouldn’t help us. It isn’t just that anything announced now would take years to develop and get on to the market. But there is a fact that we all try to ignore. Our bodies are damaged beyond repair. I can only use myself as an example, but it will mirror many others out there. 30 years of living with MS, plus who know how many years with all the other conditions who have tagged along for the ride, has left my body in a mess. What my MS has started, has often been taken over by another condition that has continued the work. I am in the category of multimorbidity. It doesn’t sound nice, but it is somewhere that many who have had one chronic condition for years will actually find themselves in. Most of us will land up with three or more chronic conditions, there is no way back. The best I could hope for is that a new so-called cure might halt my PRMS where it is. Stop it getting any worse, but the real damage has been done. Also, unless at the exact same moment in time they also found the answer to all my other illnesses, I will still never be well again.

I fully understand why the media is happy to put these stories out there, they make great headlines. They also make a huge headache for all of us who are actually living with the condition. With every new “discovery”, I have well-meaning people who almost daily tell me about it for the next couple of months. It isn’t just the discoveries of the medical profession that I am over informed about, I constantly receive tweets, emails and messages about this or that new discovery that could cure me and give me this wonderful new life, that they have found online. Most have never been anywhere near the mainstream media, they are coming from the millions of site out there that have been set up to just make money out of the sick. Some are pure cons, just people wanting your money for something that through clever wording have made to sound as though it is perfect sense. What they sell, if you are lucky is nothing more than flavoured water or syrup. If you’re not, it will do you far more harm than just to your wallet. Others proclaim a new wonder food or diet, their personal have discovery, Despite their proclamation that all they want to do is help others, by passing this information on, always has an expensive book you just have to buy to go along with it. Over the years, I have become the biggest sceptic there is. I have actually got to the point that I don’t even read anything any longer if I can see in a quick scan, a price anywhere on the page. Personally, I have never understood how people like that live with themselves.

To someone who is already ill, it really doesn’t matter where an illness comes from, once you have it, the only thing you want to know is how to get rid of it. Hope is vital to life and it keeps us going. It isn’t all focused on a cure, that would be wrong of me to imply. I still hold an amazing amount of hope, but it is hope in life and those that I love. But for someone to give you false hope, is truly damaging to some and highly annoying to others. The internet has opened many things up that unfortunately can’t be closed down again. We can’t stop the media putting out information they shouldn’t really be talking about for another 10 years. They all want to be the ones who broke the story. All we can do is hope they eventually realise that what they really own right now is the damage it has done. We can’t stop the scam merchants from selling hope to those who are running out of the genuine substance. All we can do is to try to educate those who have just been diagnosed and to support those who are so desperate that they will hold onto anything. Those of us too far along the road to find a way back still have much to do when it comes working out how to fix this mad and cruel world that we live in.

Please read my blog of 2 years ago – 14/08/2013 – Is anyone there?

A day that has already almost vanished in front of me, one phone call and suddenly I am miles off my normal routine, yes, Jake called. I have to say that in the last couple of weeks our calls have been far more upbeat and not just long lists of people from the music industry that I no longer remember, it is amazing the……..

Settling back into hope

The internet proved it’s power again when it comes to finding, buying and receiving something you need, the Psyllium arrived yesterday afternoon, now that’s service. It may have arrived, but the problem now is how to actually get it inside me. We ran a couple of tests last night to find that my idea or yoghurt is a none starter. I hadn’t realised that it was going to react with fluid and turn into a sludge just quite so quickly, I had mixed in about a third of the dose required into a small pot of yoghurt only for it turn into an inedible sludge in seconds. Both Adam and I tasted it and it just didn’t work, the Psyllium isn’t quite as tasteless as the doctor said, I can’t describe what it tastes off, but it does taste. The second test was to mix it with diluting juice, we had a bottle of Apple and Blackcurrant in the cupboard so I used it neat and suddenly had something that looked like pink papier-mache, also inedible and incredibly claggy as it stuck so badly to my teeth that I had to go and clean them to just get rid of it. It was Adam when he was cleaning up after my test that discovered another quality of this stuff, let it sit and it will go solid, but has an odd slimy texture once set, as one of my tests did set totally. I checked online and found some suggesting you just mixed it into water and drink it as quickly as you could before it turned into a sludge, not much help as I guessed after adding water to a small amount of powder that it would need a full half pint of water and the taste would make it hard to swallow. But I have a couple of ideas, sparked by a couple of blogs, first to turn it into a milkshake, that made sense if you use something to flavour the milk, the thickness would feel right as most milkshakes are thick. So I have bought some coconut milk, some skimmed normal milk and desiccated coconut, The idea is simple, make it as cold as possible, whizz it with the drinks blender and swallow, if it’s really cold and the taste right it might not be that bad. If I can get the flavour right and add the desiccated coconut to cover some of the textures it might work. The other flavour I think might work is vanilla, but to me I think the key is flavour and cold. I am also going to try making Scottish pancakes with it, getting the amount of flour to Psyllium right is the key but then I could cover them with butter and jam, then hopefully enjoy them for my breakfast. If the pancakes fail, then I could make Blini’s but that requires messing about with yeast but I think might be more successful. It’s clearly a matter of working with the stuff until I fully understand it.

When I was searching for way to actually get Psyllium into my diet, the other thing I found something that made a lot of sense to me, they all suggested that you don’t go headlong into trying to take the full amount to start with, but slowly increase it until you see what it is going to do in your body as we are all different. There is, of course, one other problem, the fact my stomach doesn’t like large amounts of anything, how it is going to react to trying to down any of these things quickly I don’t know, I am already thinking that whatever way I take this stuff, it isn’t going to be the whole lot at once, more spaced out over the day. There is one other danger here I just thought of as I was writing, I can’t deal with extra food over and above what I eat already, even though this is a supplement, it may well mean that I land up removing something else from my diet to make space for it. I guess time will tell. I know whatever I manage over the next few weeks it is going to be slow as one thing I have learned about my PRMS is I can’t do anything quickly, it is a creature of habit and if you push it, it pushes back so I have to be careful as I don’t know how it will react to this stuff. There is nothing saying that it should cause a problem, but then again there is nothing out there really about PRMS as we are a rare bunch, I can’t even be sure that anyone with PRMS has ever taken this stuff before so it’s another suck it and see situation. That is also why I decided when I had time to think about it, that trying things one at a time was probably the best way to go, I know that peppermint oil does nothing to me as I have taken it in the past so I am safe to throw that into the mix without thought, but I am not keen to try the antispasmodics until I have settled myself on the Psyllium

It strange how just knowing something has a possibility of being beaten actually had on you. I think I had got to the point where I was resigned to the fact that I was going to land up having a stoma or at least part of my intestine removed, so there was a huge relief when the Doctor said it wasn’t going to be the answer and that there were possibilities that might not cure but should improve the situation and then took the time to go over them with us. It’s odd, but all the doctors I have met in my life, it has always somehow landed up being the doctors who are not specialists in my condition. It was an ENT specialist who provisionally diagnosed my MS, he couldn’t be sure, but he took the time to sit with me, go over what he knew and what my MRI showed, I remember spending about 20 minutes with him crying my heart out, believing that my life was over despite him telling me over and over that it wasn’t the end and he was going to send me to see the best man he knew when it came to MS. I got that same feeling on Tuesday, to get the attention from a surgeon, who clearly felt that I had been let down by too many people, to take the time and go over things that really should have been tried before I was even sent to see him, well, he is now on my short list of good guys. The rest of that day and yesterday, although exhausted, I was on a high, I had hope back in my life and the problems and difficulties ahead of me just didn’t seem to matter. In fact, it went further than that, the pain that I have lived with for so long suddenly had a new feel to it, it wasn’t any less painful, but having that hope has changed how I reacted to it, I felt for the first time as though I was going to get some control over it and some of my life back. Even now sitting here unable to find any comfortable position isn’t destroying me in the same way, it’s odd, but that hope that this just might get better, has reawoken something in me that I had slowly lost in the last few months, myself.

I know that none of what we are trying might not produce the perfect outcome I would love, I’m not that stupid as to build this into a miraculous cure, I do realise that I probably will never be totally free from it, but if it only makes a small difference, it will be worth it. I guess we all get worn down by things that show no signs of improvement or that our doctors just don’t seem to be able to get to grips with, but this has been the first one that has destroyed so much of me, so far. I add the so far, because I know that my future will eventually be filled with those incurable and unchangeable things, but this has even given me some hope that they too won’t turn out to be as bad I can imagine.

Read my blog from 2 years ago today – 21/05/13 – Lost somewhere in my mind

There are times when you feel great and totally on the ball, nothing can stop you and life is not living you, but you are living it. Then with crashing realization you note all you have done all day, is screw things up. I thought those days were over when I was no longer required to write long……