Changing Values

After the rain of the past few day it is really nice to look up from my computer screen and see the sun bouncing off the buildings across the road. at this time of day it is still lowish in the sky and the warmth outside hasn’t started to build yet, so only one window open for just now. Even when you are caught inside the weather still somehow seems important, not because you want to know what to wear, or if an umbrella would be a recommended accessory, it’s importance, nor do I find that the weather effects my mood any longer, no it is far more subtle. On dull days I find that I loose track of time, the hours and minutes seem to drift into each other, but when the sun shines it’s track across the sky and the light it sends into our living room keep order to the day, without clock watching. I have found many many things just like the sun, were the importance of them has changed. The calendar means little, there are only a few dates that I have to keep track of, or remember, so days are just days, if Adam wasn’t at home at the weekend I probably would be unaware of their presence.

It isn’t the lost importance of things that is most notable, but the way previously unimportant things are now vital. I have an obsession of having what I want to eat in the house at all times, I really get angry with myself if something runs out before the next shopping day. I don’t remember before getting angry about little things in the past, in fact anger only used to appear if I had been hurt by the actions or words of someone else. Now I get angry at the opposite, inaction is far more likely to anger me than action. Although I have never been a person to remain angry for any length of time, I have become a far more mellow person over all, day after day I pass through it’s time and I am content to do so and I have, not 100% but in that direction recovered from a life long obsession of having my home picture perfect, I can mo longer be found straightening the fringe of a rug with a fine brush, but I do still straighten the odd ornament when I am on my feet.

One of the things I have noticed greatly and that is I seem to have become passionate about the News, the events of the world now have meaning, not just in what might appear as a replacement for being out there and part of it, but I never made the time before to understand and care, I regret that in a way, as now I can’t, I find I want too often to go to the places where help is needed and offer my help to those who need it. It isn’t until now that I see I could have done so much more but I was too selfish as most humans to interrupt my all important life.

Chronic illness isn’t just about being ill, it is about your entire life. Without an conscious effort, or even permission from me, I have changed all my values and never set out to change anything. The important things to me now of my husband and my home have even changed, they are in many ways more important but in different ways. I love Adam and have done from very soon after we met, that love, as it would with most couples who are together for a long time it has deepened, but on top of it an admiration for how he has coped through out all of this, how he has adapted to taking on tasks never before required. My home is as important on the side of a place I love to be and live, but the obsession of it’s appearance has diminished, but my feeling of belonging here and safety has grown. There isn’t anything now I can think of that hasn’t been touched, adjusted, changed or reviewed and not by me but by what MS has done to me.

In the UK, I say that because I have learned that it is different all round the world, but here when you are told by a doctor that you have a life changing and ultimately fatal illness, they tell you wait for a few seconds for your questions, which of course you can think none at that moment and they then send you home, may be with a few leaflets. There is no help, or counseling to help you grasp what it all means, they don’t tell you what help you might need or where to find it. Your given a pile of medication and sent home with an appointment for a year from that date. You go each year your meds may be changed or a new therapy my be recommended, but no one asks how you are coping physiologically, physically yes, but not if you are coping with the acceptance and changes you are dealing with. All of this is just left for you to go through and to deal with in your own way, I would recommend to any one that you learn to accept what can’t be changed, save your energy for fighting what can be. When the day is dull well drift, it won’t do you any harm and you will benefit from the relaxing flow and should the sunshine set your day out to fit its path. Adjusting can be as simple as that.

How are you?

It is going to be one of those days, I can see that already and it is only 10am. The District Nurse phoned to check I was OK and if I wanted her to come out and see me, I answered all her questions and said that I was fine, Sods Law they call it and I’m there again. I had been off the phone for maybe 15 mins and I started throwing up again, which was one of the reasons she called. The Doctor wasn’t happy about the fact I was sick on Saturday night and he didn’t think it was food poisoning and sent me out a prescription for some anti sick pills. I have had spells of nausea for years so I think nothing of them now, but I admitted to the Doctor they were there, you know that way when someone, even a Doctor who is used to hiding things, seems concerned about something you don’t, well I got that feeling from him. I’m not saying there is something bad wrong, so don’t think that, what it is thought is an example of something I think is nothing but others don’t. I thought it was so much of a nothing that I only mentioned it when asked and he says it as something requiring treating. I hardly brought anything up just now, mainly liquid so I am hoping that my meds are still safe, I suppose I will find out soon.

The longer you live with an condition the more you become used to having it, I know that many many people couldn’t understand how despite being clearly ill, in a wheelchair and at one point taking my food through a feeding tube for 3yrs, I still went to work daily. Near the end of that period I was only going in for 2 days a week, working from home the rest of the time. I wasn’t being brave or putting on a British stiff-upper-lip I was just getting on with things. Even when my health forced me into being housebound, for the next three and a half years I still worked full time, sat here are my PC producing everything I was asked to and more, I only stopped when like many others in the world just now I was made redundant. Chronic illness slowly creeps forward, taking tiny steps all the time, with the occasional huge jump that everyone sees, but you yourself and those that see you daily don’t see it. I can’t tell you with any confidence, any particular date when something started, anymore then you could tell me when the first grey hair appears or a wrinkle made it’s first mark, a time line is impossible. I was ill for many years before I was diagnosed and over those years I got used to having spells of illness and I had learned to keep going, probably helped by the fact that I was self employed and if I didn’t work I wouldn’t have been able to pay the bills or eat. I can only give a rough date to when my MS turned progressive and ironically that is because it was during one of my happiest spells in my life. I was newly married to Adam, my work was great and we had bought our first house, it wasn’t long after moving here that I demanded I wanted to know what was wrong, June 2001 I got the answer.

Strangely I still don’t see myself in any ways as disabled, I like most have a picture in my head of someone who had MS and what they can do and can’t do, and that isn’t me, from your eyes it may be, but not from mine. Different symptoms come and go, I vary as to the one that is most annoying and I think that is the crux when it come to being asked how I feel when talking to a Dr. With so many things wrong, but those things being there in my mind become listed as normal as they are there all the time, picking out what are the important one is hard. I could sit here and start at my feet and work up to the top of my head but I will still guarantee that I will miss loads of things, simply because they are now normal. I have to think a long way back in my life to gauge how you are feeling and I can’t even be sure if I would get it right then as I don’t have those dates. A rough one has been guessed at that I was 21 when it all started, 30yrs, find normal in there if you can, I can’t, it’s too long. Just to make it a touch harder remember my memory is also a little screwed up and finding within it, the information required on demand doesn’t always work.

Each day I just get on with things, not as I always have, but as always as much as I can do. Normal is today, just as it is everyday, don’t ask me how I am as you will get the answer I’m OK because that is what I am, I have no gauge left to me other than to match it against yesterday. Ask me how I am compared to 13 yrs ago as it was the year Adam and I married and my comparison would be lengthy.

Minority to Majority

For one just hour look at the world upside down, a strange request possibly, let me explain, just for today don’t just do things think about what you are doing. Take all the things you find simple through out your day, those simple tasks like getting dressed making a cup of coffee, as you do each of these things try and do them with just one hand, or without bending a knee, or even something as small as not being able to bend your index figures, as though they are paralysed. Each thing you do, stop some part of you from working as normal, through every action you make continue to look at the problem that one tiny part of you, not doing what it should can make impossible the things you take for granted. If at the end of that hour you haven’t change your view of your world, well try it again but do it 100% not just sort off. If you do it from your heart, you will get a glimpse of the life that millions live daily.

I am sitting here looking at my little dish filled with the tablets that I have to swallow this morning, I’ve eaten my half slice of bread and drunk my first coffee of the day, so now it is the tablets. It’s silly how you do something daily and daily you dread doing it. All my life I have never like swallowing tablets and now when so many stick I have some of my medication in a syrup form, but too many meds still come in tablet form only. I just don’t see the logic when everything I take are meds for Chronic Illnesses, the types of condition that means you have to keep on for ever, taking them, yet the makers don’t think what it is like to keep swallowing their horse pills, or how when so many conditions have swallowing problems, that it might be a good idea to have a liquid form where possible. Companies of all sorts really are guilty of not actually employing joined up thinking, taking that step to look at what they make, the how and who may be the end user. Who was the bright spark who thought that making their tablets the size of a micro dot, in a plastic pop-out pack so close together that with poor dexterity you can not fail to pop out more than one? Economics, I know, the cost factor is the driving force but surly a little thought needs to be applied to life as well.

Even before I was diagnosed with MS and the worst of my problems developed, the insistence of the modern world to make things smaller and smaller each day, caused me problems. I don’t know how you get on with childproof caps but I hate them! I always have. I do see the point but I can honestly say that I haven’t had a child in any of my homes for over 20 yrs, I don’t know one single person with a child so surly I should have the option of normal caps on things. The companies who make bottle caps could easily sell packs of normal caps without bottles, they are standard sizes if you haven’t noticed, interchangeable between products and different sized containers, I could then throw away the child cap and replace with one I can manage with ease. They wouldn’t make a fortune, but I am sure it would more than just pay for itself. I am not talking about rocket science just simple options to make life simple. It may seem like a tiny unimportant problem, in my cupboards now are loads of containers that take not just time, but precious energy to navigate their entrance.

Once you have an illness like mine you start to see everything in a different way, nothing is about design first, cost has to be a factor but it is all to often about how I can use it and how much energy does something take. I know all to well now that the same problems I have had for the last few years, are also the problems that too many of our elderly face daily as well, we might not all become ill but we do all become old, regardless how we pretend for most of our lives, that it will never happen to us, we can’t escape it. It would be wonderful to think that all you had to do was write a letter to a company and point out their error and things would change, they wouldn’t, but with our rapidly aging population you would think that they would already be adapting to aid the majority, as that is what our world is facing right now, a society where the minority problems of the disabled are becoming the problems of the majority.

Teaching the young

Looking outside doesn’t seem to be the best idea today, it is another one of those warm damp days, yesterday evening I turned the TV to BBC one to watch the teatime news, I had turned over a little early and the days coverage of Wimbledon was just coming to an end, so I left it there and returned to what I was doing on my PC. I could here the sound of Tennis balls, players and the crowd, but when I looked up the windows there was a steady rain falling and the sky was black, with all the threatening power of the Thunder that never happened, ‘Flaming’ June, correct, but the other use of flaming as it normally is in the UK. We have this delusional idea that the Summer is filled with sunshine and long lazy days, it fills us with hope every year but reality shows us a different story. Life is constantly filled with false hopes and expectations, images that in our mind are the ideal of how our lives will be. When working I came a cross so many disillusioned youngsters who had traveled through their early years being filled with the TV gold plated view of their future. They had reached the grand age range of their 20’s and felt hard done by, they didn’t have the big house and fancy fast car, their time wasn’t spent horizontal on the beach, with a photo perfect partner massaging them with oil. Their sculpted view of world from the media and debt laden parents who covered them in expensive items no one needs, wasn’t real, their wages were low and they had to be there and do something to get them. Their start in the world of disillusion, leads to a life of anger and frustration, with growing anger at everyone and anyone, as they are owed, what they had been led to believe was there.

That is just an example of the illusion that we are all guilty of building, I never once when I was younger, considered that my future would turn out to be what it is, yet here I am. There were no lessons at school that every made me think that although healthy then, I might not always be that way. Not once did I ever see or hear anything that gave me the impression that there were illnesses that couldn’t be cured by doctors. I like most children was protected from all of that, I also protected my daughter from it, but she did at least see me ill several times and visited me in hospital, so there was a seed there of things could go wrong.

Some of you will be thinking at this point that there are loads of programs on TV, like Casualty, 24hs in A&E and so on, but have you ever managed to make a teenager watch a program they don’t want to, the situation these days in many ways is worse, when I was a child and in fact when Teressa was, there was only one TV in the house and we all watched the same things. Today the TV is no longer a family activity, it is an individual experience, each person watching what they want in their own rooms, if what I hear is true the younger members are also more likely to be playing games, than actually learning anything. This is why I think it is time that with in the School situation there should be a view of things not being perfect, of not getting a job that pays £50,000 a year at age 18, of finding yourself disabled, dealing with pain and illness and that they are real possible future facts, not horror stories that happen to others. I know it is impossible to teach them everything that could ever happen in the future, but I truly feel there is a huge gap, the only people I ever saw ill was one of my Grandparent, I say once in a hospital bed and I wasn’t allowed to go again, he died a couple of weeks later and I learned nothing, other than illness should be hidden.

We all want our children to have a childhood and we all want to equip them with the tools for their future life, unfortunately we don’t know what their future life will be. GCSE’s and Degrees doesn’t equip anyone for the possibility that they could need someone else to wipe their backside, or that the pot of gold they dream of may be a pot of sick. How to do it? A hard one but one I believe that need discussed and one that has to stop being hidden.

Normal service restored

I have been told many time in my life that I have a way with words and an ability to empathise with others, probably why I was a successful sales person but more than that it is something I can only explain has come from inside. I wasn’t always aware of it and to be honest the first clues that these where parts of my personality didn’t show themselves to me until I was 13 and I started at school to take ‘Drama’ as one of my subjects. I wasn’t ever selected to play the main roles in anything, but I was continually asked by the teacher to demonstrate with him how something should be said or acted, it puzzled me at the time. Why, if I was so good that I could teach the leads how to act or say something, why, wasn’t I playing lead? The answer was simple, my height, I towered over all the boys in the class, the balance on stage of a leading lady’s partner reaching to almost her shoulder at best, didn’t work. I only wish someone had told me that. Like so many other things in school I took it personally and gave up Drama the next year.

It is acceptable for teenagers to act irrationally and to storm thorough and out of situations at a speed of a tornado, because of my home life I was searching for approval, somehow that came across as being difficult to adults, well until I developed a vocabulary and the ability to combine it with action, then my rebellion changed and I did things that left my class mates open jawed at times, like the day I convinced my English teacher that I could put her out of her job, just by having a conversation with her, saving myself a punishment for not handing in homework on time. It became a game with me, a way of beating adults and standing my ground without being punished for it. During my first marriage this was beaten out of me and I became a somewhat small and simple individual who was inside always 16, as it often felt as I though I wasn’t allowed to grow up after we married. It took 10 years for the real me to wake up and move out and I spent the next 10 living the life I needed to to catch up and grow into an adult, but ironically less than 10 more yrs on I became housebound.

We all grow in different ways and at different speeds, but the talents that are inside of us all is to often not used or exercised. Outside of great friendships that I have had throughout my life my love of language and understanding of emotions haven’t really been used to any great extent, yes I have used both to help earn a living but until now I haven’t felt that they were being used for any real good. There was a comment that was left on yesterdays post that has prompted today’s, the first line is “Thank you for explaining the unexplainable to those who cannot hope to begin to understand.” On one level it is a wonderful complement, on the other it makes me realise that I still need to try harder.

I think we are all guilty of thinking that everyone around us can understand when we say I have pain, but why should they? It is like the conversation I had with my English teacher, I won because I had an unfair advantage, I knew in advance how to argue it, combining open and closed questions that lead to only one conclusion, she was boxed in, and couldn’t win. I know what my pain feels like, I live with it and it is part of me and just like that conversation you don’t have a hope in understanding unless I let you into every little bit of it. If anything in hidden the result will be a pointless ramble. A few have asked me do I really need to be so graphic, or to go on about the less palatable subjects, or even the socially normally undiscussed, well there is your answer, yes I do and if you truly want to understand you will read as short of a ‘Vulcan mind meld’, there is no way of letting you feel what life with an chronic illness is.

Somethings are easier to explain than all of you should find this one reasonably simple to grasp, I had a really good day yesterday! If I could have jumped with joy I would have! OK some of you might find my reasons basic but after the last few weeks I actually do feel I have something worth celebrating. When you live as I do, it is days like yesterday that are the points that make other things easier to deal with. Anyone will tell you that pain overrides everything and it really does, reading back the last couple of weeks post shows that clearly, I would actually go as far as to say that it changed slightly my way of writing. All the expression is dampened and the words I chose to use feel to me to be blanker, less alive, and that is something I stress constantly that I am alive, not just going through life. I think that is what makes being housebound more than just bearable for me, that I still can maintain the feeling of being alive. Jumping out of bed and greeting the day with joy, is not in my scope of activities any longer, more a slow slope upwards while my body accepts it vertical position and initially forced activity. Since Saturday I really feel that I have managed to sort out the pain meds and after the rotten weekend I managed to eat a bit more and hold on to it, such simple things, but simple thing are often the most important. No doped feeling tells me that I have settled to the medical compound of MST and it is holding the pain at the level I can live with comfortably. My Dr’s surgery is only open for a half day on Tuesday so I will leave it until tomorrow to call and have a chat about the dosage I am happy with, I can’t see why he would not agree but I always worry about conversations with medics, we all have an authority figure that stumps us and unfortunately for me it’s medics. Even though he withdrew all the medication for my bowels I am not getting any relief from the constant leakage apart from about 10hrs after I spent the night throwing up, but that isn’t a solution that I want to repeat. All in all though I feel more optimistic about the coming week and not as though it is a daunting obstetrical that is waiting to crush me, which is how the whole of last week appeared.