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. 

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......