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. 

Truth

Truth - is it fact, evidence, reality, knowledge, proof, witness?  I guess it is all these things.

I realise today that I seem to be still in the I feel sorry for myself mode and do not know what to do for the best. I have several solutions in front of me, but none seem to fit entirely. I guess I feel frustrated more than anything - so maybe I am not being truthful with myself. 

My current 'frustration' seems to follow a pattern - I either wake with it or it strikes round about 5 - 6pm. The noise in my ear never seems to go away - it just increases in intensity and to such a volume that I am sure everyone around me can also hear it. The deafness or clogged feeling in my ear does not seem to go away completely either - just varies from day to day and I get momentary relief if I stick my finger in my ear for a while..... nothing further needs to be said about that solution.....

My appetite has improved slightly, except now I want things I ought to avoid - a large slice of moist  warm chocolate cake with a rich creamy ice cream would go down a treat..... I wish fruit was not so expensive - could just eat a bag of cherries.

Although I love living here - I long for the things I left behind - sausage and chips, satsumas, galaxy chocolate, mint chocolate, heinz stuff, tomato relish, decent bacon in a bacon butty, Uncle Ben Sauces, Australian ginger beer, Shloer, Alprosoy products, Innocent Smoothies.... must stop - it is making me feel depressed... lol

But my weight is still good...... still losing a little every day I think

Thing is, I know that if I went back home, I would not be able to eat half of those things anyway.....

So in my case truth is reality - my life has changed - like it or not - it has changed.... just need to accept it and move on!!

Adjustment

Adjusting to a totally different diet is always an adventure mixed with interest and often a goal in mind. I guess I have all these things in place in my experience; however usually a change in diet occurs when one feels ready to make a change. In my case I have had this forced on me.... I was not ready for this and I am currently not liking it!!

I constantly long for something to eat that I used to enjoy. At least the unpleasant taste in my mouth seems to be disappearing - so that is something.

My day to day exisistence has not changed much since my last entry - I still wait with anticipation to know if I am going to get through the day without an attack or if I will wake with one - puts a whole new meaning on the Snoopy's 'I hate mornings' pillowcase that I had for years.

I have been feeling somewhat angry about it all - it seems to be getting no better and the noise in my ears is unbearable at times. I want my life back and I do not know how to get it back. I have been keeping to the diet, been taking the medication, yet there seems to be little or no change. I am sooo tired, lethargic and despondent - all part and parcel of the illness I know, yet it offers little comfort.

The other night I determined to cook myself a 'decent' meal of chicken, baked potato and green beans. I discovered with joy that I can have two tablespoons of sweeet and sour sauce - yipee!! 

So after taking a while carefully cooking it all, adding pineapple, carrots, tomatoes - oh yum yum, I take it to the table. After a few mouthfuls the room begins to spin - oh great - do I try and eat the rest, will I be throwing back up in a moment, will the spinning stop if I sit back for a moment - all these questions run through my mind. But I am hungry and I want the food. In the end I concede defeat and lay down. Thankfully I fall alseep almost immediately. I wake up after what I think has been five minutes - in reality I have been asleep two hours. I feel a lot better now, so I go back to my meal and eat!!

I have been spending my time trawling the internet looking for recipes to cook things and making a list of things I need to look for in the shops that will enable me to safely cook and eat versions of things other people take for granted. I find it odd that it seems that in the UK I would be able to cope with this diet a darn sight better because there are a lot of low sodium foods there. I am sure I recall low sodium corned beef - a product I like and use a fair amount. Baked Beans too - though goodness only knows what they taste like!

So - I have to get on with this diet change - like it or not. I am even going to stop eating chocolate in case that is causing me a problem also. I seem to feel better in the afternoon so am taking my medicine earlier in the evening so that maybe I will be able to wake up in the morning. Next week I am going shopping and looking for the things on my list and I will be trying to make bread.....

I am going to succeed and achieve the things I need and want to. I am relying on Heavenly Father to help me like he did last year when I was sick. But I know I need to put the effort in and show willing first!

Adjustment???? No big deal...... with the right attitude

Wimp

Another excessively restless night - thank goodness I was on my own.... at least I am not disturbing anyone but myself.

My ear is somewhat blocked today and occasionally my other ear is too -joining in sympathy I suppose. I arranged to go out with the sister missionaries today and I was well enough to go!! So pleased with myself. It was a good experience and glad I made it.

I felt hungry so  I made myself an egg sandwich - had one yesterday too - yum!! I thought I might have chicken for dinner and so I took some out of the freezer. I gazed around the appartment and decided to do the dishes later. I smiled at my lovely flowers from my children and I felt sad that the gorgeous flowers that my husband sent are now dying. I so love him.

My ears seemed to be a little better so I thought more positively about my driving test. I checked the website again for details of nearest centre and what I would need to take for ID - all looks good. I decided to purchase some practice tests online and did that for a few hours - eventually getting all the questions right each time. I will try the tests again tomorrow and see if I remembered it all.

I planned to go out and get some yogurt and wool or look for a present for my grand daughter, but about 5pm I started feeling ill. The noise in my ear was unbearable - a piercing sound. The sort of noise you would ask someone if they could hear it too. I got up to walk around and found myself stumbling and falling even though the room was not spinning like it usually does.

I laid back down and the familiar unpleasant sensation on the back of my neck started, together with the arm tingling and I knew what was coming..... by 6:30 I start throwing up and boy does it hurt my throat for some reason. After a while I check the clock - it is 7pm. I lay on my side and cry - I so hate all this. I feel cross I am crying and so I stop - after all what good does it do? 

I guess I must've fallen asleep, as the next time I check the clock, thinking that only about 5 minutes have elapsed, I see it is 8:30pm. I start thinking totally unconnected random thoughts about all kinds of things. My throat hurts and I wonder why people are bulimic - they must have a sore throat all the time and they do it to themselves - mine is totally involuntary and I hate it.....

I have the nastiest taste in my mouth like I have been drinking sea water or something. I try eating an apple - it tastes like cardboard. I try drinking some water - yuk! I opt for the old favourite - gum - at least that seems to cover up the taste. The noise in my ear has stopped and I can hear a little better

I have decided that I really do not want to be like this anymore. I feel I just want to go home. I feel I just can't do this. I refuse to follow the pathetic idea that this is a sign - nonsense!! But I feel like just giving up and booking a flight home. I feel I have lost all my previous positive attitude and ability to see the funny side of it all and just deal with the symptoms, not letting it all get to me. I want to know if I am ever going to get better. I want to know I am going to be alright. But instead I am just sitting here, chewing gum, crying, feeling terrible and worst of all - a complete wimp about the whole thing

So Far So Good!!!!!

Things are looking up - restless night again - but I feel good - only the constant nasty taste and the thirst - no big deal at all. Ear a little blocked - but again - no big deal.....

I have been doing more family history - specifically looking at the Chessell Family and trying to make some sense of the info I got from someone else - time consuming - leaves me little chance to think or dwell on other things.

I have a list of things to do and deadlines to meet also. Goals to achieve and the wretched dreaded driving test to pass...... but that can wait a little I think...... 

Mother's Day - USA

A better day today in sooo many ways......

I woke feeling I had not had enough sleep, felt a little light headed, swaying a little when walking, but not too bad all things considered.  I therefore feel pleased!!

I made it to church as well and managed to stay the whole time, even though at one point I thought I would not be able to do so. A few people asked how I was, which was nice. I explained that it is going to take a little while to get better, but I am hoping it will not be too long.

I have been assigned a VT partner which is good - gives me something to do that is for sure.

Tomorrow I am hoping to continue to work on my CV and get it done in a couple of days or so. May even go and take my written driving test too if I still feel good by Wednesday....

I think I could get used to Mother's Day here - a two hour meeting for the sisters incorporating the VT conference followed by a brunch consisting of yogurt, danish pastries and fresh fruit - yum!! Prior to all this at the end of Sacrament meeting  - a large bar of chocolate!!

Had a chat with 4 of my children, which was good.... and they sent me flowers too... lovely

Good day - but I still miss my mum....

One day at a time

To me this was always an old people's phrase and certainly not relevant to me. But I am rapidly conceding that either I am old or this really does apply to me in more ways than one.

There is a certain amount of wisdom in adopting this attitude when life changes. It replaces the natural tendency of peering hopelessly into the future and worrying about something that is not here yet. It helps to focus the mind on dealing with present issues, which at the moment for me is more than enough to cope with.

I felt really good and so much better yesterday. I felt I was making progress, learning to adapt to my new challenges and not letting it get the better of me. I was in fighter mode. Championship mode. 'I can cope with anything' mode. 'I will still be able to do all that is really important to me' mode.

The missionary sisters called by to see how I am doing and to bring me a card and some muffins. So kind!! But when I explain I am on a low salt diet, their faces drop as they I realise I possibly can't eat the muffins as there is salt in them - oops!! They also invite me to go with them to an appointment next week and I am sure I will be able to go, the beast willing of course...

So going to bed on this positive wave was a pleasant experience.... For the first time in ages my husband and I laugh and joke in bed as we used to. I smile to myself as I settle down and feel that things are definitely improving.....

But during the night it all changed!! I woke a couple of times for the bathroom and then I had sharp indigestion pain - an occasional reminder that I have eaten something that perhaps people without gall bladders should not eat. This presents me with a dilemma - do I take the usual gaviscon which I think has sodium in it or hope the pain will go. I decide to take a chance - knowing that if I don't take the medicine the pain will just get worse. I crunch up the tablets and realise that my mouth and throat are far too dry and it is turning into a powder. I need a drink, but in my sleepy state I go the wrong way and end up in the bathroom and not the kitchen. I feel confused but feel now as if I am about to faint - so I lay down on the floor. As I lay there in the dark, I begin to feel better and the whole thing just strikes me as a funny situation and I start to laugh - maybe hysteria is creeping in....

I have a piercing noise in my ear that is getting worse and I have a sneaky suspicion that I am about to have 'an attack'. So I go back to bed, ensuring I have all my things ready and sleep, hoping I am wrong. It is about 5:30am and I fall alseep, but all I have are strange and horrible dreams. I am getting clammy, my neck is heating up, my arms are beginning to tingle - oh joy - it seems to be coming after all. I have a raging thirst and a nasty taste in my mouth too....

My husband is asleep beside me - thankfully he is totally oblivious to my discomfort and I do not want him to wake to the joyous sound of me heaving over the side of the bed. I open my eyes to check if the room is spinning - it is. By now it is after 6am and I hope I can try to keep it at bay until he leaves for his softball game. 

Success!! It is after 7am and he touches my arm so that I will turn over and he can kiss me goodbye. Instead I wish him good luck, say I am not feeling too good and close my eyes hoping nothing happens. 

So I drift back to my weird dreams. I finally force myself to wake at about 10am or so. The piercing noise in my ears has pretty much gone, the room has stopped spinning and I just feel sick and my head aches. Yipee!! I see this as some sort of triumph.

I bought some new meclizine tablets yesterday for the nausea - raspberry flavour and chewable apparently. All I can say about them is that I have never had raspberries that tasted quite so obnoxious. My nausea has not disappeared either - so I am not convinced they are the same as the ones the doctor gave me, even though the pharmacist in Walmart politely and convincingly assured me that they were......

Ron returns from his game triumphant, but injured. He has pulled his ham string he says and it really hurts. The guys have given him some 'amazing cream' to soothe his war wounds. Hope it works better than my raspberry flavoured chewable meclezine. 

Tonight we plan to go out with a couple at church to see the new Star Trek movie - maybe I will have to drive!! Tomorrow it may pain him more and I will perhaps have to drive to church also.

We shall see.... one day at a time.....

If ye are prepared, ye shall not fear

Yesterday was a bit of a disaster in some ways and not in others. During the course of most days,events and incidents there are good points and bad points. I suspect some would say that if you automatically look at the bad points, you are deemed to be pessimistic. Personally I do not think this is necessarily true. I like to save the good till last and finish on a positive note. You are more likely to remember or reflect on the last thing that is said rather than the first.

So the bad points of yesterday:

1) I was ill on waking

2) I was unable to go to my appointment

3) My job search was delayed another day

4) I got upset

5) I couldn't do what I planned

6) I continued to be afraid to eat things

Now for the good points:

1) I had a good excuse for staying in bed

2) I discovered a sympathetic person

3) I discovered I am still losing weight

4) I learned a little better how to cope with an attack 

5) I was able to get some things done

6) My husband finished work a day early and came home

7) My husband sent me flowers

Having evaluated the day in this way I can see that it was not a complete waste. My biggest problem is a tendency to focus on what I don't have or don't do, rather than what I do have and do accomplish. That is not to say I consider myself ungrateful for the things I have or have completed, I just don't spend enough time considering and evaluating the things that are working or are successful.

But of course without some focus on the things that are lacking in my life and are not working, I would never improve or change. It is all a matter of balance, perspective, need and desire and of course, a realistic and achievable balance, perspective, need and desire.

So although yesterday in some ways was a bit of a setback, in others it was progression. eg although I was ill - I was prepared - ie I had a sick bucket by the bed, anti nausea tablets, water. As there was a clock I could see without my glasses, I could time how long the attack lasted - something I had not been able to do before and had been unable to answer when asked by doctors. Having read extensively about the illness and the experiences of others, I was not as scared as before. 

I decided to try various things to see how my skills were affected - I typed emails - what a laugh - weird words appeared instead of what I thought I was typing - so it took twice as long with constant corrections. I tried a few computer games at different times throughout the day and found it difficult to make my fingers do what was obviously required. My sons of course would say  no change there, as that was my usual performance when playing computer games. I also tried reading and found I had to read most things twice or more as the words were not what I thought they were at first. I found that as the day wore on and I began to feel better that my skills returned to previous levels - interesting.......

So in my evaluation of yesterday I find that ignorance is not necessarily bliss - it can breed fear and lots of negative emotions. When I first had these attacks I was convinced I was going to die, I really did not know what was going on with my body, how long it was going to last and worried if I would ever be able to function normally again. In complete contrast I find that knowledge, understanding and preparation can turn an unpleasant event into a more positive experience that has enabled me to learn more about my condition and be even more prepared next time.

So I really did prove once again that the scriptures are true and in particular this one: If ye are prepared, ye shall not fear.

Victor Meldrew

I cannot believe it!! I am having a Victor Meldrew moment - against all the odds and possibilities available to me today, things have gone horribly wrong.

I woke this morning, clammy, the back of my neck feeling hot and uncomfortable and experiencing a sinking feeling. I felt as if I was lying at an angle with my head tilting backwards and yet I was not. I knew what was coming and I hoped that it wouldn't, but it did. Bang - full scale attack with all the relevant symptoms, but this time my arms and hands are tingling with pins and needles - odd sensation.

Thankfully I am on my own so there is no one to watch me crawl to the bathroom.

I have an appointment today at 10am with someone who is going to help me get my CV right and help me find a job. 

I look at the clock - it is 7am. I wonder if I will be able to make it. The attack lasts almost an hour and all I want to do is sleep. I decide to take an anti vertigo/nausea pill and hope that I will be ok.

Ha ha ha - how foolish and amusing  I must've looked when I ventured out of bed. I can't walk in a straight line and still feel terrible. But I need to make this appointment somehow. After managing a shower in some sort of drunken way, I realise, most disppointingly, that I am not going to be able to drive and must contact the person to cancel the appointment for the second time. I hope she is understanding and doesn't see me as a pathetic attention seeking time waster.

I feel at a total loss and wonder what I am going to do. 

When I explain to some people what I have wrong with me I usually get one of two responses - Never heard of it - what is it? Or even better - well it isn't life threatening is it and lots of other people have it. Then they proceed to tell me of famous people who have it. Perhaps they think, that by some miracle, the sharing of this information will cure me or at least relieve me of the symptoms........

Hopefully soon the beast will go back to sleep and remain undisturbed for many years and I will be able to function again

Je ne sais quoi

Many people have said to me over the years that I should write a book about my life. I usually respond that I am not too good at writing or essays or that sort of thing according to an english teacher at my senior school - but what would she know?? Then of course there is the argument - well who would want to read it anyway???

Maybe the best thing to do is write on a daily basis something that I am thinking about, have seen or heard. I enjoy reading other people's thoughts on their blogs, so maybe I might give someone some enjoyment somewhere...

I also thought it might be a good idea to record what happens to me on a daily basis healthwise as I apparently have Meniere's Disease. But I must be careful this does not turn into a boring catalogue of symptoms....

I am not too impressed to be diagnosed with this and would rather not have it. I keep reading info on the internet trying to find some evidence that the diagnosis is wrong and I do not have it. But I am failing miserably and it seems I must bow to the superior knowledge of an ENT doctor.

The big problem with Meniere's disease is that it affects everyone differently and the response to treatment varies enormously. They also don't know what causes it and it cannot be cured. They know that with some people there are certain triggers and it is down to the sufferer to determine what these are and avoid them. But once you have awakened the beast so to speak, the symptoms take a while to go away and many other things, although not the original triggers, may aggravate and prolong the symptoms. In my case, I think the trigger was prolonged travelling in a car - a 7,000 mile round trip across america and then a trip to Washington DC. I have yet to discover what is prolonging it....

It seems the french doctors of old were fairly clever as they discovered two of the chronic conditions and illnesses within my immediate family. My youngest son has Ollier's disease. Louis Ollier and Prosper Meniere lived about the same time in the 1800's - maybe they even knew each other. Unfortunately, although they both discovered and put a name to these illnesses, it would appear they were unable to find a cure. Maybe they both had nagging spouses who resented their time spent in medical research and they consequently gave up on any further investigation, happy in the knowledge that their names would live on long after they had gone.

Anyway I have been ill now for three weeks or more and am thoroughly bored with it all. The noises and pressure in my ear are unbearable at times and make it difficult to hear and identify more than one sound. Background noises of everyday living are more noticeable and I long for peace and quiet. At least the violent vertigo with its accompanying unsociable symptoms have ceased. But I live in constant dread of it returning without warning and being out somewhere on my own and people thinking I am drunk or something. The severe vertigo has been very scary when it happens and although it sounds over dramatic, you feel as if you are going to die.

I am on a trial treatment for a month with a diuretic pill to relieve the build up of fluid in my ear and as this causes a loss of potassium from the body, I have to compensate by eating bananas or other potassium rich foods. I also have some tablets to relieve nausea and I must also go on a low sodium diet. This is good I guess as my blood pressure is up too.

Soon I will not be able to eat anything!! I am already on a low fat diet because I have no gall bladder. I can't have anything with artificial colouring in because I break out in a rash, have violent nightmares and become generally bad tempered and snappy. I don't drink tea, coffee,coke, alcohol or smoke because of religious reasons - which incidentally I would now have to give up anyway. I have to cut down, if not avoid, chocolate altogether. No more processed food, preserved foods, salty peanuts, crisps,fizzy drinks, cheese except swiss if I must have cheese,ham,bacon,soy sauce or that well known flavour enhancer - monosodium glutamate....so that's means no chinese food!!

But I can eat anything I prepare myself providing I don't use salt and as much fresh fruit,veg and meat as I like - yummy.

I spent two hours at Walmart reading labels and finding low or no salt alternatives to what I eat.Was interesting to say the least - I did not realise there was so much salt in everything we eat.

The one good result from all of this is that I have lost weight and am almost back to the weight I was when I arrived in the USA last September.

Every night I go to bed hoping that my ear will be better in the morning and praying that the vertigo does not return. I have an unpleasant taste in my mouth the whole time and feel very tired most of the time.

The timing of all this could not be worse - I need to get a job and pass my driving test. I have been waiting for months to get my permit to work and my Social Security number. Meniere's disease decided to arrive the same week as my permit and SSN.

It is almost like history repeating itself - when I got married in 1977 I became very ill and had to have my gall bladder removed in 1978. I got married again in 2008 and now a few months later I am quite ill and am considering having my head removed......