Worlds change

I was talking to my daughter earlier in the week, she was doing one of her check-up on Mum calls, but, it left me with a thought, that made me realise just how cut off, I am, from the world. To be honest, realising that was actually quite a shocker for me. I am one of the few who actually watches the news channels. No, I don’t mean for half an hour twice a day to see what is happening, I watch it. The News has always been important to me, but when I became housebound, it became an important part of my day. The first two hours of every day, is nothing but News, an hour plus around lunch time, and another hour of so around tea time. If something major has happened, well it’s not unknown for me, to stay fixed to the News channel for most of the day. There is something about not being out there, that has made the outside world and what is happening in it, essential viewing. I don’t suppose that that is too surprising really, but even politics has ceased to be a turn-off. The one thing that hasn’t changed, is I hate with a passion, the so-called local news, note, I don’t even give it a capital letter, it doesn’t deserve one. But, I digress. My need to be up to date, to know the latest state of the world, has become one of my driving forces. This week, with the terrible terrorist attacks in both France and Mali, and the Russian airplane being brought down by an explosion last month, has more than doubled my viewing. Teressa said something to me that made me realise something, I’m not connected to the world at all.

She has been talking for a while now about the possibility of a new job, which at the moment although having been offered it, she hasn’t totally decided whether or not to take it. John and she, have lived in London ever since they arrived in the UK two years ago. This job would mean them leaving the capitol and moving to a part of the country where they would be able to fulfil a dream of theirs, to buy a home. As we spoke, she out of nowhere added a new reason to move, neither of them, feels safe in London any longer. A few years ago, I would have thought of that, less than ten minutes after the news of Paris had settled into my brain. It never entered my head. I came off the phone, feeling cold at my detached state. How had I become someone who thought no further than the place I am sat? That in reality, though, is just how it feels. Despite all my efforts, to know the world, and what is happening in it, I have not been seeing the bigger pictures. Don’t get me wrong, I have a huge amount of empathy, for all who have been injured or lost their lives, and I fully appreciate, the severity, and the snowball effect, of what is currently happening, but I am still isolated from it all. It is as though the walls that have been surrounding me for the last 8 years, have slowly been getting thicker and thicker. Teressa’s reminder that she, her husband, people I know and love, still face the dangers of life, even though I no longer do.

I don’t know when the walls started to get thicker, how my feeling of isolation, somehow meant, that everyone else was also in glorious isolation too. I have lived for so long inside my cocoon, that I had forgotten what it means to actually be outside it. We all measure the lives of others, using our own as our baseline. My baseline is so far from the norm, that my measurement of the world has become warped by it. I had forgotten what it feels like to walk down a road, one moment in the warmth of the sunshine, the next, inside a shadow so dense that it has turned the world cold, as my life, is now spent always in the sunshine. I have nothing to worry about outside of me. I am under no threat, from anything other than my own body, there are no shadows. I have no job to lose, no children to pacify, no meals to cook or shopping to do and no bills to pay that aren’t covered. I have no need to look over my shoulder, to question the footsteps behind me, no friends to disappoint and no enemies to plicate, none of the realities of life, touch me any longer. I don’t quite live in a gilded tower, more a gilded cage, where someone managed to slip the cover over when I wasn’t looking. Is it any wonder that no matter how much I have tried to stay in touch, that all I have actually done, is to constantly learn the events, but not their true and ultimate impact. Yes, the facts of life are important, but so are the emotions, there is a clear danger that I had missed. When you live looking outwards, but only feel inwards, the balance is gone.

Semi-isolation, is not, a normal state for a human to live in. I am sure that I would be one of those people that trainee psychologists would love to do a case study on. I can just hear them squealing in joy, as they sat down and started to draw up a framework of questions and area’s to explore. What impact do 8 years or seeing few others than just one person do to someone? How psychologically balanced can someone remain without the normal interactions and pressures of life? I can hear them because I, and Adam, have heard the other side. The total disbelief that I can possibly be happy, content and not drowning in depression. Clearly, there has to be an impact, things that I haven’t noted, felt or seen, there must be, it’s only logical. The more time that you spend by yourself, the more you do look inwards. It isn’t meant with any malice, but it can be hard at times to hold onto, that those faces on the TV screen are real people. People with lives, people with feeling, people just like I once was, part of a bigger more vibrant world. At times, they even slip for two-dimensional all the way down to one. I have no line of reference to them, now way of connecting, as not only does the outside world often look alien now, it also sounds and feels it. It’s hard when your part of it, to understand what I just said, but it’s a little like having been in a coma for 8 years, one where some information filtered through, but still the world went on without me. Fashions change, people came and went, even some building managed that one as well. Words have snuck into the language that once didn’t exist, the entire make up of this planet, has changed in that time, and all I have had to keep up with it, is my husband, my TV and my PC. A vast quantity of available knowledge, but always controlled by what I knew, when I was last out there. How I react to that world, has clearly been changed by it as well.

Analysing my own life, is sometimes hard when you look at yourself with anything other than a mirror, well what you see isn’t always as pretty as you would like. Mind you, that sometimes happens with a mirror as well. We all change over time, but those changes are influenced by what surrounds us. I’m changing, but my surroundings, circumstances and company are identical, not changed in any way in all that time. As time goes on, I am sure I will miss as many of those changes as I discover. The good thing about the ones you don’t like, you can always change them back, which my unchanging world actually should make it easier for me, than it is for others.

 

Please read my blog from 2 years ago today – 21/11/2013 – The purpose of accountability 

It has been a strange sort of week, TV isn’t helping by being filled with little else than one of my favourite TV programs ever, “Dr Who”. I always thought that it was one of those shows that you grow up with…..

Seeing beauty

I woke up this morning feeling ill, I mean normal ill not MS ill. I just feel totally off, somewhat nauseous and with a great desire to climb back into bed and feel sorry for myself. I am reasonably sure it is all coming once again from my guts, as I have been to the loo three times and the pressure feeling around my gallbladder, which I rarely notice early in the day was there from the second I stepped out of my bed, exactly as it was when I went to bed last night. Still it is just another 4 weeks until I see the specialist again and unless something totally horrid happens in between, I will manage OK.

I think we all hate this sickie not right feeling, it is better to me at least, if I felt really rotten, totally wiped and throwing up, normally goes hand in hand with just sleeping the day away, curled up cozy in bed, off colour not sure what it is sick, means you carry on as normal but feel off all day long. Straight choice, simple, I will choose truly sick every time. I think this is the reason that all chronic illnesses are so wearing, even on a good day it feels like you are trying to manage your life well below power all the time. Simple tasks become impossible and everything drains the little energy you have. There is on the bad days a temptation to curl up and just let everything wash past you, but unlike a bug or a virus you can’t look forward to it being over as you know tomorrow will be similar to everyday that has passed since it started, and similar to everyday that is still to come. I know that many people feel that their lives are like that anyway and that there isn’t exactly exiting things going on in there lives. They do the same things day in day out, get up, go to work, go home, and every weekend will be spent just as every other weekend, but trust me it isn’t the same thing at all.

When I was in remission and working I could have fallen into that everyday being the same as the others but I always seemed to find something that made it different, something that stretched my imagination or my knowledge, and everything had a purpose. I believe more and more as time goes on and I speak to others with the same or other conditions, the difference between those who cope well and those who struggle, comes down to just that, being able to see the things that are different, to find interest and excitement over things others pass dismissing it as the same as always. I suppose this is a simple example, I have lived in this house for 13 years, we decorated it and we added in loads of furniture and ornaments, nothing new has entered the house for several years now but daily I find myself stopping and looking at something that has always been there, but feel as though I am looking at it with new eyes, as though I hadn’t really seen it properly before. I see new details I had missed or realise that it is more beautiful than I thought it was. Adam has often asked my what was wrong because I am starring across the room, no where near the TV. There is never anything wrong, I am just seeing something I hadn’t really seen before, or just enjoying the sight of a piece I know well. I have never been through that everyday the same, because no days are the same they all have high points that make it different. I can’t say that about my health.

Yes it changes and yes I have good days and bad, but my health is my health and I can’t change it, nor can anyone else. No matter how many high points I have in a day behind all of it there is still my health, dragging me downwards, making life difficult, stopping me from doing what I want to do. Those of us who deal well with a never ending illness are the ones who still have those high points, those moments of wonder that give us a purpose. It can be anything but for me, it is almost everything, at times even my illness, there are high points there as well. If you can see the beauty of rain on a window or the sunshine through a piece of crystal, you are still seeing the beauty in life, stop seeing it and yes life will be the same everyday. In many ways living with illness isn’t about the illness, it is simply about living.

Planting a Seed

I think my plan of sitting here at my PC is actually helping, I have spent the bulk of the last two evening just playing games while watching TV and my back is showing signs of improving. As I said yesterday I took some ibuprofen and it actually did help, Adam suggested what might explain it as in the pain was now at a level that it could help, where as a few days ago it was to intense to touch it, he could be right. I have waited this morning again for my normal meds to kick in and I still have pains to the ibuprofen has just been added, I have noticed before that if you can stop something hurting it heals quicker, I guess this is because you stop straining the surrounding muscles and once all relaxed, it has a chance to heal properly.

I don’t know why it has taken my so long to understand something really simple, I have for years in fact nearly all my adult life in watching anything that is medical from documentaries through to soaps and drama’s. Saturday evening wouldn’t be Saturday for me without my dose of Casualty, I’m not sure of what made me have one of those light-bulb moments but I did and I suddenly realised that I started watching them all in the vain hope that I would see something that would give a clue to what was wrong with me pre my diagnosis, the strange thing was I never did. I have though learned a great deal about other conditions, so much so that I often have a diagnosis before the Doctors in the program I am watching, not that that make me a doctor just faster than the scriptwriters. It amazes my how much can be learned by selective watching, and you can choose almost any subject these days. It used to annoy me when I would sit at work and over hear chatter about the night befores viewing and how it didn’t matter what day of the week it was, I never heard them discuss anything of value, just wallpaper TV, there is nothing wrong with a mix, but so many seem to watch nothing else. I have been often asked how I know some of the stuff I do, well the answer is simple, I choose what I watch and I learn from all of it. I wish that Sky had existed when I was a child I would then maybe have had more opportunities open to me when I left school as I might of had a chance of knowing there where jobs out there outside the ordinary.

I suppose that is why I find it an irony that I have so much knowledge about so many things and so much experience in different work areas, yet I am sat here condemned to never being able to use it fully, or to be able to earn a living from any of it. I do fully understand that not many of us who are housebound wouldn’t be able to perform full time jobs, but I really do feel that around the world there is so much knowledge that is being wasted, and so many people who could contribute to others lives but we are left idling and isolated. I am not sure what exactly we could do but I was inspired by an item I saw on TV last week when a retired teacher was via Skype helping to teach children in India, I don’t think she was paid but I can’t be sure about that. What it did make me think about was the possibilities of harnessing the skills that are not being used and a way of giving some at least, the chance of contributing and achieving, rather than just existing, it could be a win win situation. The next problem is what and how to do it? I doubt I will be the person to come up with it but here is the seed planted and waiting, maybe you can be the one to make it grow. Think about it.

Doing the Knowledge

There are always loads of things to think about in life and I have been told often that I “think too much”, a phrase I have never really been able to understand. To me if you don’t question everything then you don’t have a chance of understanding anything. I am inclined to believe that “knowledge is king”, it’s OK I’m not trying to put in as many quotes as I can into one paragraph, they are just apt to my post today. When I first had the idea put to me that I had MS I wanted to find out as much as I could about what I was facing, at that point I didn’t have a confirmed diagnosis, just an opinion of a doctor who didn’t specialise in neurology but ENT. What I did was what many do I started to read everything that I came across, I read and read and scarred myself to death and also laid down in my mind a lot of rubbish, of things that may never happen or have and aren’t as bad as the medical description made them out to be. At that point I thought I was arming myself for the future, that I had to know what was possible to happen to me as time passed, I wasn’t.

One of the things that I would love to change about the whole medical system in the UK is how and what they tell you when. I do believe strongly that they should tell you everything they know and not hold back anything at any time, but they miss terribly the opportunity to help us all learn and understand what is wrong with us. Some of you may think this isn’t a Doctor job and I am not suggesting that it is, what I am suggesting is that knowledge packs should exist for all chronic conditions, it is that pack that should be handed to you at the point of diagnosis. I and many I have spoken to have all come away with questions that once out of the hospital the only place we have for information is the internet and as we all know that isn’t the place for a novice to find reassurance.

The first thing that I would want to see in such a pack is firstly a FAQ, I will almost guarantee that every doctor could put together a list and those list will be not unexpectedly reasonably identical. I know in the last few months on twitter that I get asked again and again the same things and I try to answer but I am a patient not a Doctor, I can only ever answer with how it affects me. I do know that a lot of conditions are individual to the patient but there always are huge crossover or even universal symptoms that could be explained.

The second a glossary of terms used and what they mean. I have on a few occasions translated doctor speak incorrectly and it is their language that is confusing ,not what they are saying, plain English isn’t used by the NHS and it often feels as though they are talking in a foreign language on purpose so you don’t know what they are really doing.

The third would be a list of web addresses and literature, that have been checked for their presentation of information and passed as suitable to read. I have trawled through medical papers and research notes trying to find what I am looking for and not been able to understand most of them, wasting hours for a simple question.

The fourth a list of organisations and charities along with contact details that specialise in assistance for that particular condition, with a few details of how they can help. I am not big on these but I know a lot of people find them helpful.

The final one is actually the one I hear most tagged with “no one told me” is a list of what benefits and support that are available if you fit the criteria and how to claim them. There should also be info on what might be available in the future such as carers, respite and so on, all these things I know change from area to area, and the criteria change from time to time, but if you don’t know it even exists you can’t even try. I spent 2 years paying out over £300 a month for taxis, there was I eventually discovered a payment I could claim that paid the difference between what my travel expenses would have been use a bus to travel to work and what the taxi cost was, it worked out that I only had to pay about 1/3, the rest was picked up by the EU. I know I was surprised to the EU doing something useful.

I would have given my right arm to have had such an information pack. It was months after diagnosis that I was given a couple of one page leaflets that told me nothing that I hadn’t already found out, but it had taken a lot of work and upset to get it. I really believe that armed with this information it would make adjusting to your condition a lot easier. Not everyone I know wants to read anything other than a one page list of contacts, but the more you know and the more you learn about thing, the better you are armed for the future. When a new symptom that you didn’t even know could happen in your condition appears, it is frightening, if you already knew it might happen, then the fear is lessened and being calmer, you deal better with the situation you find yourself in. In a round about way as well the pack would save the NHS money as a lot of visits to the Doctors are not needed all that is needed is to know it is normal to your condition, or that it is something to get seen about asap.

Not everything can be covered for every person but surely it is better than people around the country stressed out trying to find the info they need when someone already knows, and they just haven’t told you.