What has been going on????

It has been a seriously long time since I wrote anything here. Much has happened in that time. I have even been to England again - with pretty much the same results as last time. Seems to be a pattern. I was even more glad to return to the USA this time. Perhaps I have been cured of my homesickness at last.

I have a job, though not a secure one. Pays the bills for now - that is all that matters. I like my job I must admit, so will be sorry if it should end. I will miss the money of course.....

I am thinking about turning this blog into a daily account of my job as it is most amusing at times... we shall see how it goes. Today's highlight was perhaps moving forward with our move into the space next to where we work - this has been discussed since January 2011. It is now becoming a bit like the Second Coming - no one knows exactly when it will happen, there have been a few predictions - all false. And so we wait and watch for the signs....

A close second to the highlight of the day was a series of bleeps and then the doors locked and our swipe cards would not work - oh joy! Eventually after a few more bleeps we were able to once more freely roam the National Archives.

Can't wait for tomorow's events! Just have to survive the daily battle with the I85 south

An hour or so

I do a lot of family history research and often read about life as it was 150 - 300 years ago. I am fascinated by people and what they did and how their daily life progressed. I track families from when the parents are born, get married, have their children, become in laws, then grandparents and then die.

Sometimes it takes only an hour or so to do all this, sometimes less, sometimes more, depending on the number of people involved and if they have unusual names. I wonder about them as I look at the names they chose for their children - who chose the names, did the children like the names, what sort of personality did they have - were they lively, play jokes or were they quiet and studious - what did they hope to become - did they achieve it?

I feel sorrow as I note the deaths of children and loved ones and marvel at the constant flow of pregnancies. I cannot help but think of my life and compare it with theirs and wonder whether we would be friends if we were born at the same time.

Sadly, at times, as I deal with the unending bitterness extended to me by my children, I wonder about family arguments and disputes. How awful it must've been for parents to part with children who moved away or emigrated and they never saw them again. No means of communication other than letters and telegrams or messages brought by friends and aquaintances.

How fortunate we are that we can be in touch instantly all over the world and easily share happy moments, successes and triumphs. We can exchange news of every detail of our life if we so wish and yet we are often too busy to do so. Instead of sharing happy news and uplifting experiences and our day to day thoughts, we choose instead to write vile hurtful things and vent our frustration and anger about our life on absent, but contactable relatives.

Our lives are constantly changing and before long they will be at an end. How quickly time passes as we get older. I do not want to get older or become frail and dependant or have to deal with 'old age'. But I know it is inevitable. Having been ill for so long and unable to do so many things, I find I want to put aside petty differences and concentrate more on the happier moments of life.

Yet sometimes I wish I had been born in 1856, for then my life would be over and the worries and hurt and pain I feel would be gone and then maybe someone would be tracking my life, when I was born, when I got married, what I called my children and when I died - perhaps in an hour or so.

What is the point of it all?

It has been some time since I wrote anything here. I know that no one reads it and so really I could write anything I wanted to write. I could say all kinds of things about all kinds of people and no one would be hurt or offended because no one reads this at all! It is my electronic journal -- my secret diary - my true inner self - ha ha ha as if....

So in October 2009 I went to England as planned and stayed a month as planned. I visited the dentist, the doctor, the hospital, my daughter's grave, my dad, spent time with my sister and did some family history, spent time with my son too, as planned. I made myself available to spend time with my other children as planned, but it was not wanted nor required. In fact I discovered that unbeknown to me they have lives to live and that their life goes on - it doesn't stop because I have turned up and I shouldn't expect them to drop everything. Ouch! that was painful to hear - but at least I know where I stand in the scheme of things.

You know parenting is such a wonderful thing. The moment you conceive your life changes even though you cannot see the little darling as yet - yes - your life definitely changes. In 1978 in August I discovered I was pregnant - oh joy! little did I know that this momentous occasion was actually the door beginning to firmly close on my life as I knew it and the person I was familiar with was about to begin slowly disappearing.

From this moment on, I would be subjected to an existence that was centred wholly and solely on the wellbeing, comfort and growth of another. No longer would I claim sleep when I wanted or eat any food that I wanted or indulge my time on myself or go anywhere whenever I felt the urge or indeed do anything that I might deem interesting.

I had already given up many things in order to be married and without fully understanding the long term effects of what 'being pregnant' actually entailed, I had unwittingly allowed nature to take its course and was now firmly on another route from which there could be no deviation other than death.

I do not regret having children or being a mother - it was truly what I wanted. However, if I am truthful, my rosy idiotic version of motherhood never really materialised and it has now deteriorated to such a degree that I think that maybe I should have been committed rather than be allowed to continue with my pregnancies over the following years. I suppose the fact that it was so difficult for me to produce a live child and bring it home from hospital should've been the clue that I should've spotted and I should've given up the idea of being a mother then and there and carried on with plan B - breeding Irish Setters.

I am sure it would've been a lot more satisfying and rewarding and less emotionally hurtful than having children. Although in fairness dogs cannot speak and what would they say to us if they could - might be as unpleasant as the outbursts from one's own offspring I suppose.

But here we are and there is no turning back or changing things. I feel as if I gave of myself emotionally and physically for many years and what is the return for my devotion to them and giving them the best years of my life? What gratitude am I shown for unpleasant preganancies and horribly long and nasty labours that I endured to give them life? What friendship is extended to me for defending them against the world and providing them with opportunities that neither their father nor I had? What time can they spare for me in consideration of the hours I spent without sleep whilst feeding them or nursing them when sick? What birthday and Christmas gifts do they plan and give in the same way I did for them? To be fair one child is trying to keep in touch and another remembers my birthday - but I am trying to not rely on this contact too much in case it ends.

I remember many years ago realising how far down the food chain I actually was and how far down the list of important people and things. I thought that position was fairly secure. However - apparently it is a very fluid position and difficult to maintain and it seems I have slipped even further down the line - almost out of sight.

If I sound bitter - it is because I am. Bitter and disappointed with it all. Tired of it too. Tired of thinking about it. Tired of talking about it. Tired of spending emotional energy on it. Tired of trying to come to terms with it. Tired of trying to deal with it and not let it upset me or make me ill. It is rapidly getting to the stage where I feel as if I don't want to talk to them any more than they want to talk to me or have anything to do with me. I just don't see why it has to be like this. I can't understand why they treat me like they do or have no time for me or are the least bit interested in my life. Can they really not spare 30 minutes a week on reading and sending emails? Is it really so hard?

But I don't like this state of affairs at all and am at a total loss as to what to do. I have tried so many things and none of them seem to work or improve my relationship with any of them so I ask myself - just what is the point of it all? why do I bother at all? So I think I am not going to bother any more. Perhaps 2010 will be the year I do not give them anything or try any more to be the mother I think I ought to be. If they want to talk to me or contact me they know where I am.

Can it really be so?

Time is passing, little changes it seems and yet I am older and more aware of it. In the last twelve months I have achieved some things, started some new things and failed in other things.

Since last on here I have been to see more doctors, listened to more opinions on what is wrong with me and spent a considerable amount of money in the process.

If they are all correct then my health deterioration has simply been caused by stress, nothing more, nothing less - GREAT!! cut down on your stress they say, learn to manage stress, get a hobby or do something to relax -ha ha ha ha.....

So briefly to sum up - I have spent about $2,000 and am still ill.

My blood pressure is too high. I have tried different tablets that have nasty side effects. My episodes or attacks are getting longer. My ear is constantly blocked or making a noise...... but I still weigh the same!!

In an effort to beat stress I have been crocheting blankets - so far have made 8 and am halfway through the 9th - not working I guess as I am still ill, but I am now very good at reading patterns.

I have booked a flight home and planned a month long stay in an effort to resolve matters with my kids in a face to face setting, spend time with my son when he gets home from his mission, be more involved with my daughter's wedding, spend time with my sister and dad, visit my daughter's grave, get teeth checked and fixed, breast screening done, get some possessions from the house, eat food I miss, buy food to bring back and collect my mail. I now wonder if I will be more stressed after my trip.....

I now attend counselling to help me - 2nd session today. Hopefully this will help too like last time.

I have returned to writing in my journal - this is also a stress busting exercise.

I am on a headache diet - no more chocolate, raspberries, doughnuts, hot fresh bread, raisins - basically all the things I like to eat - fantastic.

I take loads of pills every day - although have finished one course now - so only 10 now instead of 15. I know some people take far more - but I am not a pill taker and usually avoid them like the plague. But have been willing to try in an effort to get better. So 10 to me is 'loads'.

I have been assigned to teach Adult Sunday School - twice a month - I like doing it - makes me feel useful in some way. I often go out with the missionaries - again it is something useful to do. I also go out visiting teaching. Glad to do all these things - just wish I also had a job and felt well - never satisfied I guess.

I have finished loading all my names onto the new familysearch website. My tree has grown during this process to 5,428 people. What shall I do with my time now? Although I constantly fiddle with it, looking for more info to fill in the blanks and then finding more people to add. A year ago it was about 3,000.

So all in all I see this last 12 months has not been entirely negative. I have learned many things, some I would prefer not to learn, but some things have been good. I just hope there are more positive things in the next 12 months and less negative.

I have lived here a year now - can it really be so?

Cinderella

It is now a week since I last posted anything here. After last Sunday's episode, Monday did not get any better. It all started again at 4pm and I decided I was going to finish what I had started and was not going to give in. Bad idea. By the time my husband got home I had at least finished all I set out to do, but was lying in bed.

His comment of 'sick again?' seemed irritated and annoyed which just made me feel worse. He went to the gym and I struggled to cook him some dinner. Also another bad idea it turned out.

When he got home he refused my sweet and sour chicken effort and ate cereal instead whilst watching the TV. This also upset me further.

I then began sobbing pathetically, feeling totally useless and totally lacking in hope that I would ever return to to the sort of life I once enjoyed. I took for granted being able to work endlessly and paticipate in almost any activity I so desired. I can't get used to not being able to. I feel this whole situation is so unfair.

The constant exhaustion, vertigo, vomiting, heaviness in my head, ear blockage and ear noises is more wearing than I can explain. The days when I feel well are like an escape into a cinderella-like existence that has an end time when everything goes back to normal.

Tuesday was just a dull day - tired and listless with a heavy head. Wednesday was a normal day. Thursday was a good day - got my residency and everything was great. Friday was good, Saturday was good. Sunday back to normal and now today is another dull day.

I feel I can't go on like this. I cannot face another normal day or dull day - I want good days and lots of them. Yet 24 hour segments keep passing with alarming regularity and I never know what each day will bring or whether it will be a normal day, a dull day or a good day.

Sunday morning I had plans for this week if my good days continued; but by 2pm Sunday those plans were over. Took a long time to recover this time and be released from the spinning, vomit inducing world I found myself in - four and a half hours to be precise. Waking from weird dreams from time to time, convinced I had only slept for about 5 monutes, maybe 10 - in reality it was an hour or two......

I read a good article today by Hank Atkins about how he has been disabled for two years with this. It is called 'Wow - you don't look disabled'. Here are the opening and closing paragraphs:I

I get that a lot. And it always makes me think. What does it mean? What does "disabled" have to do with "looks"? I mean.... ok, sure... if my leg had been ripped off in some some horrible accident, it would show. If my ears had been burned off in the act of listening to a Paris Hilton tune, that would show, too. Perhaps if my hands had been incinerated by how hot my wife's iPod was (before it died last week)....

But none of those things happened. Instead, something happened inside my head, where nobody can see. It might be a small hole in the inner ear... maybe the after-effects of a viral meningitis... maybe Meniere's Disease, or even epilepsy. So far the doctors have no clue why for over two years I have been constantly dizzy and going through a myriad of symptoms that make an acid trip look like good, clean fun. Every day is damn near the same. Wake up spinning, puke a few times, sit and watch the news... and keep spinning, ready to hurl at a moments notice till bedtime. Sometimes I feel "OK" enough to get some work done.

"Wow, you don't look disabled...." Followed by sympathetic glances at my wife that imply "He's a free loader" and "Oh that poor girl".

What does that mean, exactly? I think it means that in order to be accepted as handicapped I should drool, or act retarded. I don't know. Is it stereotyping? You bet. Is it profiling and a form of prejudice? Yep... I've been turned down for disability twice because I don't appear "disabled enough". By doctors who should know handicaps don't discriminate. I'd like to see one of them go through this for a single day, let alone the years I have had to deal with it. So, be aware... if you aren't ugly and didn't lose a limb, you may have almost no chance of ever getting anybody to believe there is anything wrong. Because "you don't look disabled".

So very true. When I tell people I have been ill for several weeks and been unable to find work because of it - they look at me surprised. I admit that on a good day or even on a dull day I don't look ill - I look just fine. They also tell me they suffer from dizziness too, but it doesn't bother them much or they just take a pill for it. They might as well say what they appear to be thinking - I am an attention seeking hypochondriac. I too used to get dizzy moments and they were not a bother for me either - but this is so much different. I wish there was some wonderful pill that would banish all my symptoms so that I could live some sort of productive useful life. I would pay a large sum of money for it and take it without ever forgetting.

But the reality is there is no known cause and no known cure that suits all patients with this. It is hard to truly diagnose and it is darned hard to live with.

I live in hope that maybe my Cinderella - like world will one day become a reality as it did in the fairy story. Where every day is a good day and the normal days are just a hazy memory...... banished like the ugly sisters

Whatever - Life Goes On

I have not posted anything for a while as these posts seem to be depressing. I wish I felt like I was winning the battle and overcoming all obstacles. Instead it is following a pattern of a good day here and there. A small triumph when it occurs and I feel as if I want to do so many things that I have not been able to do for so long. I find I do not want to sleep for fear I will never feel like this again and sleeping will end it.

Last week for the first time ever I had two attacks in one day. I cannot describe the bitter disappointment I felt and the fear that maybe things were not getting better, but worse. However the one good thing after an attack is that the next day my hearing returns and I feel good. Every time I have an attack I hope that it will be the last and that the nightmare is over and I have my life back.

The ups and downs of this illness are well documented by all who have it - so at least I am comforted in the knowledge that I am just 'typical'.  Using the word normal does not really apply here!

Friday and Saturday were sooo good. We went out for the evening with friends - such fun. Saturday we went shopping - aaahhh - almost back to normal and seemed as if it was all behind us now. But Sunday - back to the usual performance - arghhhh!

I felt awful at church, but it passed off. We went to our family study class and I began to feel sick, so I took a tablet hoping it would pass off again. But no - my head began to feel heavy again and spaced out, so I knew I needed to lie down. I staggered to the car, grateful that no one was there watching and wondering if I am having a problem with the Word of Wisdom....

My husband is good - he knows I need to go home. So he says nothing and drives quickly home so I can get to bed. I sleep for about three hours and feel so much better when I wake. But I resist the urge to go about my normal tasks, knowing that I need to continue to rest. It is sooo hard. 

It is my sister's birthday so I decide to call her and we chat for an hour or so. Sooo good to talk to someone that I do not have to translate my words for and who speaks as I do. She is sooo supportive of all my troubles. I regret our inablity to get on with each other years ago - seems a lot of time wasted. Now I think we really appreciate each other and enjoy the time we spend together.

So... the days go by and whatever - life goes on...... I just hope that soon the good days will outnumber the bad days.

Feeling Good

Yesterday was a great day for me. I ventured out twice and although a couple of times I was unsteady on my feet that was all that happened. By 8pm I was feeling so good I felt like dancing around the room. I felt sooo good it seemed almost untrue.

I didn't want to go to bed either in case this magical moment passed and did not return. It almost seemed like a clip out of the film Awakenings - where patients are cured temporarily from an incurable disease.

I cannot describe how good I really felt - not tired or lethargic in any way - like a weight had lifted. As ever I began to think that maybe my life was improving after all and started planning things I would be able to do if this continued.

Eventually and most reluctantly I went to bed. I couldn't get to sleep for ages - must have been well after 3am before I finally slept. I had weird dreams - woke a couple of times - finally at 10:30am my dad called and woke me up properly. 

It was so good of him to call and check on me. The last time we spoke I had to cut the conversation short as I had an attack. He told me he had sent me some jaffa cakes - didn't have the heart to tell him I will not be eating them for a while as they have chocolate on them; but they will be something to look forward to....

In the course of the conversation he tells me that someone he knows has the same problem as me and he has no problems with it and it doesn't bother him much at all. Well good for him - shall be glad when it doesn't bother me any more. I almost feel as if my dad is yet again doubting how ill I am and that he thinks I am making a fuss. He reminds me again that my sister has it and she manages. I try and explain - yet again - that when I had this before I too 'managed' - but this time it is different - it is far far worse and I am at a loss as to what to do.

By midday I start feeling the familiar spacey feeling in my head. I stand up and find myself staggering - I feel upset - my husband is coming home today and I want to be well!! By 4pm I am so tired that all I want to do is sleep - he is going to the gym - so maybe I will be better by the time he returns.

I sleep for an hour - weird dreams as usual - I wish I could record them as they are so funny. I decide to get up and start dinner. I feel a little better and at least my headache has just about departed.

I am very disappointed that the 'feeling good' episode didn't last longer and I wonder how long again before I feel as good.