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.