Sunlight from below

I saw something yesterday evening that I don’t remember ever seeing before in my life, I was transfixed by it but it lasted less than a minute and unlike the new generation I didn’t have a camera stuck to my hand. I was watching ‘Antiques Roadshow’ when in the corner of my eye I saw a light, it was more of a glow than a light and it was so bizarre that it was transfixing. Living in a flat the view from my window is really that of the flats across the road, with gaps filled with greenery, then more houses. Noting that isn’t on almost every street in every city through out the world, so seeing what looked like was the guttering of the flat opposite flood lite from below, was odd. I had to stand up and go to the window to investigate. There were no floodlights? Every house and every tree was lite from below by unseen lights. Scientifically I expect the answer was that it was refraction, the setting sun and it’s deep colour was bouncing of invisible layers of the atmosphere, but it was magical and only there for seconds, before disappearing.

It was a beautiful soft light, but at the same time warm with a strength behind it, I suddenly saw how our ancestors could have seen just the same and with no understanding of science, seen this to be a sign from the gods. As the effect faded the light of the setting sun became deeper and deeper through the orange ranges and on into deep burnt reds. A beautiful end to a rather damp and dull day. A settled back into watching the TV but I couldn’t stop thinking about it and imagining the scene in ancient Greece with the same illumination covering the Acropolis, it was so easy to see the soothsayer reading into it future events and blessings.

To me this was no sign but it was something new and a little inspiring, it’s not often that God goes down your street and sends blessings on everything he touches. Sorry I’m being flippant again. What I hope it is though, is yet another sign to those reading this that although I never leave my limited living space, I am still finding and discovering new things, a little more proof that life goes on and still inspires from right here in my flat.

A fighter, me, why?

I have frequently heard and read in more recent months, that I am a fighter, a survive, courageous, a strong person and several others in the same line, which I personally find a little hard to accept. Firstly as they don’t sound to me, like me and secondly I don’t think I deserve such titles. We, I suppose, all never see what others see in us, as we each have an image in our minds, of exactly who we are, in body and mind. We all like to think that that is what other see, but over the years I have discovered that other never see that person.

I as most when a teenager thought that everywhere I went, everyone saw me and everyone looked and remembered. I was an arrogant little pain in the butt who thought herself beautiful and important. In my twenties I thought no one could see me and no one would even waste time looking at me, I hid behind ordinary and pulled my hair over my eyes, if I shut out the world it wouldn’t notice I was even there. My thirties found a confident, outrageous, colourful person determined to be seen, to turn the beliefs of conformity on it’s head and show myself off with a strength that was a well rehearsed act, inside was a slightly shy and awkward person. My forties I wanted to be seen as someone who was logical, knowledgeable and studious, could innovate and develop, I was more desperate to be seen as a brain rather than a person. Now strangely I find that I can’t tag myself with anything, but I see that as a really positive step.

I have found partly by age but mainly I am sure to my confinement at home, a very balanced and open person. I didn’t get here by a design or some big plan driven by reading inspirational help books or any of these things. The strongest thing I have ever done was to actually accept me as me, I accepted everything thing that I had done in my life, I recognised everything I did wrong or right and I settled in myself in me, as me, without acts or shame. Only then did I look again at where I was and how I was dealing with MS, instinctively I had worked with it and around, I had never really fought it, as fighting in exhausting and pointless, when your body can’t do something then it can’t do it, so live with it. There is one word in this paragraph that I think is the reason I am now doing what I do to help others and myself, which is the real driving force and that is instinct. Everything I do connected to my MS is done instinctively, there is no plan, no formula. I am simply doing what I do daily, from an instinct inside me, that is balanced with and by my acceptance of the things I can’t change.

I have always thought that it would be interesting to get everyone I know to write two things down for me, first they would have to swear on what ever they find most precious, that what they would write would be 100% honest. First a physical and mental description of themselves and second one of me. Dangerous possibly, interesting definitely.

Brain fog or custard

I’m find it hard today to hold onto a thought for too long, this often happens but it is always a strange feeling. I have spoken about MS brain fog before but I haven’t tried to describe it before other than to say you forget things, well that is a long way from the full picture. Brain fog it may surprise you to know, doesn’t just effect your brain.

When I try to sit here and work out exactly how to explain it, it gets harder to explain by the minute. My whole head is engulfed as though it doesn’t end at the skin, there is a force field surrounding it hovering three or four inches from my actual skin and it is gently put pressure on my brain, in a fashion which I can only describe as controlling. Just writing this has already produced several examples of the confusion it causes as doubts on spelling are seeded and grow all the time. Take the word whole, I just had to Google it to check which is right, hole or whole, the more I tried to find the answer the more the doubt seed grew. I can trust nothing I do as done without double checking it a few minutes or sometimes seconds later. I have to stop typing and check other pages that I have open on my computer often mid sentence, with no real reason other than they have caught my eye and I need to look. Returning to this page then means I have to read over what I have written so I can continue, but following the lines on the page take moving the cursor over the words otherwise I get lost. Concentration is a trial, something that you know exists but you can’t find.

My eyesight feels tunneled, although it isn’t, but there is a sensation of blinker being there but not excluding sight. Hearing is fuzzed at the edges, voices sound mumbled once they enter the sponge that is over the sides of my head. No part of my head is free a strange triangle from the bridge of my nose extends to under my chin that is tingling and edged with numbness. Within the triangle there is often a feeling that the area has actually disappeared and nothing but a space remains.

To call this fog makes it sound simple and not really that bad, as though the only effect is a slight slowing down, while you find your way through it. I think custard would be a better description, thick sludgy and covering everything, you can scrape a space and create normality for a few second but as you know with custard it slowly refills the clearing you made. Once you have lived with this feeling for a few years you know what it is and it will clear returning to normal service until the next visit. The first time makes you panic, convinced that you are going mad and convinced this is the end. Maybe one day it will come to visit and stay at which point I may stop blogging as if I wasn’t mad before I would be driven so, getting from the first to the last word to type would get me there.

Treatment, honey or not

Everyone with MS will tell you there is one common factor and that everyone has different symptoms. If you don’t have MS that simply sounds nuts, different symptoms surely mean different illnesses. That I am sure is one of the reasons why it is proving to be difficult to find a cause or cure.

Over all the years since my diagnosis there have been glimmers of hope with new discoveries and so called breakthroughs and all have either disappeared from discussion, as they are working their way through trials, or simply disappeared as they fail to show results. I suppose the one that there was the most publicity about was the possibility of using stem cells to repair the Myelin damage. Many sufferers paid huge amounts of money to clinics around the world for very mixed results, from what I have read since, there is still hope that this theory will actually supply improvements in the future but it is no longer being hailed as the long awaited cure.

Just yesterday I read research from Australia using protein to block the damage to the nerves, not a cure but hopefully a way of halting any further damage. Something that would be of fantastic use to someone like me. If I could at least be held at this level, I could live with that. This morning through SecureACure4MSĀ© on Twitter, I read an interesting paper on the use of infection by parasitic worms, it is starting to show results as well in trials, but like all trials from start to available is around 10 years in the country it is developed in, then several more to be passed by the NHS for use.

There is a great deal of research going on but there are also a great number of people around the world who also read these medical papers and don’t see something that is there to help people who are desperate to have the simple right of good health, but as a honey pot to be drained. Although the internet is a fabulous resource to those suffering with MS, it is also putting the same information in to the hands of thieves and charlatans. I have seen many documentaries and programs following stooges sent to see these “Doctors” and to go through treatment. The vast amount of money taken is mad and bankrupts many, but when you are desperate you will do anything. In Britain I feel we are slightly protected by the NHS as in general if they refuse the treatment there is generally a good reason. Oh before someone pipes in with the cost issues, I actually frequently agree, there are limited funds and the funds have to be used for those who would most benefit. Having stirred the hornet nest, lets move on.

I have myself approached my Neurologist over articles that I have read recommending this or that treatment and not once has he done anything but smile, nod his head and say no for loads of different reasons. I am not in anyway saying that I haven’t received appropriate care I have but I have learned not to get excited by something I read and to wait for those responsible for my care to agree that there would be a benefit. As the most common form of MS is relapse remitting understandably that is the form that the most research is done. I belong in a tiny group of people, just 5% of all sufferers, the research is limited as are the treatments.

I hope that I am wrong but I have accepted that there is little chance in my life time of anyone coming up with a cure for MS or even something that could really stop my MS getting worst while there is still a point in stopping it. Although I do not see the prospect of my MS being dealt with, I hope that I along with all other sufferers will supply guinea pigs and data for those still to come.

Finding myself

The past few days are still taking their toll on me as yesterday afternoon I slept for 4 hrs and I was in bed again by 10:30 last night. To be honest I will accept exhaustion any day before bad pain, at least when asleep I don’t feel anything, OK I know the argument that I don’t sleep as well because of the pain and that why I’m so tired, but I still don’t feel pain so who cares! I kind of like to see it as my body catching up on all the hours I lost when surrounded kids, (not just mine) and working jobs that expected 24hr work a day, whilst calling it just 8. It seems the older I get the more I realise that nearly everything in life is some sort of trade off and I often think that that is a lesson I wish I had been taught as a child along with cause and effect. I know, it’s OK, I’m not that stupid yet, I do realise they are lessons we all have to learn, but why does it take so many years to get there.

Having MS has changed my view and understanding on so many things, probably far more than I am even aware of, but there is no doubt that I as a person have changed. To my surprise where I thought that I might become rather grumpy and fast tempered I would say that it is really my softer side that has grown the most. Adam might want to sight some occasions that display how wrong that statement is at times, but that is just it, at times, I thought for a long time that I wouldn’t have been able to adjust, to be able to accept a life any less than perfect. I was always known by others, as someone who wouldn’t accept anything less in myself, my home had to be the best and cleanest it could be, anything I made, had to be just right, my work, beyond reproach and my appearance precise.

It is a slow process and we all take the journey eventually whether through illness or age, or both, the time comes when we find out who we really are. I’ve been stunned to find I am under all the fuss I used to live in, there is actually quite a simple, gentle and accepting person, which I now realise is a fabulous strength. That to some may sound odd when I am someone who fights and won’t give in but that is why I can fight, because I take the time now to accept what I can do nothing about and fighting what I can. I have worked out that everything doesn’t have to be perfect and that no matter how much I might want it and I can’t turn back time. I’ve learned that I have a manipulative streak but I have also learned that everyone else has as well. That I hold closer in my heart the people who have touched my life than I ever thought I did and that I do actually need people. That strength has nothing to do with muscle or bravado, it is a silent force that can’t be seen yet it can be felt. That somehow despite my life’s history, I still want to trust in human nature and kindness until it is proved not to be there and that love overpowers everything. That not everything I believed in was right and that total futility of holding grudges. The biggest shocker I had to accept and totally turned upside down a life time of learning, was that Doctors can’t cure everything, so get used to it.

If I was to give anyone that has a chronic illness a bit of advice it would simply be accept, get to know your enemy, embrace it and understand it, until you have take those simple steps, you can not judge and fight the battles you have a chance of winning, fighting everything is futile.