Last week’s blog admittedly reflected some of 2012's frustration and negativity in our life. Sometimes that happens and in 2012 it seems it happened quite a bit. I spent the first 15 hours of the new year in bed and the rest of the day was a wash as well. Yet I'm okay with that. You see, I have Meniere's Disease and sometimes it wins. I promise that this is NOT a poor me and I will get to my point.
As a person who aims to be self sufficient it's important to acknowledge that I have Meniere's disease. Meniere's disease is most frequently diagnosed during middle age though I've had it quite a long time. Meniere's disease is an inner ear disorder. It is not well understood, has no known cause, is unpredictable and often what I consider 'invisible'. Attacks or episodes of Meniere's disease often start without warning. They may occur daily, or as rarely as once a year. The severity of each episode can vary.
Meniere's disease usually has four main symptoms: Drop in hearing, Ringing or roaring in the affected ear or ears, Pressure in the ear and Vertigo.
1. & 2. Hearing loss may occur during an attack, in fact I believe it generally does. In most cases the hearing loss is only in one ear as Meniere's most often affects only one ear but it may affect both ears. When Meniere's disease occurs in both ears it is referred to as bi-lateral, this is what I have. Generally speaking a person's hearing tends to recover between attacks but gets worse gradually over time with Low frequency hearing being lost first. At this point in time I am essentially deaf in one ear and slowly losing the hearing in the other ear. However, my ears can also be overly sensitive at times making any sound intolerable. The roaring or ringing in the ear known as tinnitus is equally difficult and has prevented me from sleeping on many a night as the silence seems to amplify it.
3. A sense of pressure in the ear is also common and though most ear doctors have said it should not cause pain it often does. Just as flying or driving over the mountains, ear infections, or even swimmers ear can cause pain due to changes in pressure within the ear.
4. Severe vertigo or dizziness is the symptom that causes the most problems in most people. People who have vertigo feel as though they are spinning or moving, or that the world is spinning around them. I continually feel as if I am moving, often feel as if I am falling and lately I also have a feeling of rocking or bobbing as if in a row boat during a really bad storm. Severe nausea, vomiting, and sweating often occur during a severe attack. Symptoms get worse with sudden movement and the person will frequently need to lie down. This is usually true and I generally I try to sleep through this. Typically The dizziness and feeling of being off-balance will last from about 20 minutes to a few hours though I've had longer lasting episodes and multiple episodes in the same day.
Other symptoms can include: Diarrhea, Headaches (it is being found in studies that many with Meniere's also suffer from Migraines, myself included), Pain or discomfort in the abdomen, and Uncontrollable eye movements. There are also repercussions from medications of which there are actually very few. Primarily I am given Water pills (diuretics) to help relieve fluid pressure in the inner ear and Valium to help reduce the muscle/tissue contraction in my ears. The valium also helps to ease the Nausea a bit. Diuretics when you live a loooong car ride to anywhere suck and Valium of course can be addictive and causes drowsiness.
Other changes that are recommended to help with the symptoms and keep you safe include: a low stress environment, resting during severe episodes, a low-salt, low caffeine diet, Avoiding sudden movements, bright lights, TV, and reading during attacks, because they may make symptoms worse. Uumm yeah I don't really always follow orders too well...boredom can and does sometimes take over after you've spent a day or two in bed resting but haven't been able to sleep.
It is also strongly suggested that one Avoid activities such as driving, operating heavy machinery, heights and climbing until 1 week after your symptoms disappear as a sudden dizzy spell during these activities can be extremely dangerous. It is recommended that I basically consider myself fully restricted from these activities and I generally don't do them. By the way that Climbing bit can and often does include stairs depending on how steep they are. You may also need help with other basic things like standing and walking when you lose balance during attacks.
Meniere's comes with the possibility for all kinds of secondary injuries. Bumping into things and falling is common. I now have a rotator cuff that suffers impingement on occasion and sciatica both from having fallen in the past. The most recent injury is a concussion I incurred on the 16th of December when I lost my balance during a bout of vertigo and inadvertently broke my fall with my head. It's been several weeks and I'm still recovering. This presents still other challenges to our self sufficiency. I will always need a medic around.
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So why am I telling you all this? What's my point? My point is that life is messy. When you have Meneiere's disease you never know when you are going to be laid flat and as a result have your entire life change. In 2007 I became fully disabled after several years of off and on problems. Most people look at me and don't understand how or why I am considered disabled. They see me doing "normal" everyday things. They may think me simply lazy and uncaring because I sleep until noon or think me a drunk when I walk with an unsteady and wobbly gait. They may assume I 'tune out' or am indifferent during conversations because I don't hear properly. When I fall people make all kinds of crazy judgements...if they see it...I must be drunk...if they didn't see it then that injury couldn't have come from falling, no one falls like that. They never associate it with a medical condition. Yes, folks, I do have a medical condition and it’s an unstable unpredictable one at that.
It's no picnic for my husband either. He has to pick up the slack when I'm sick or recovering from an injury. He has ended up leaving jobs to cover things here at home when I had to have surgery and done lots of minion duty while putting up with people who pass judgement about him not having a "regular" job. That includes potential employers who view his being a stay at home dad and periods of unemployment due to family issues as "voluntary" and negative. It's hard for him to be a stay at home dad and caregiver when he thinks he should have a job and knows we need a better income.
We've had to rebuild our lives many times. Thank god we are experienced at it, I guess, because in spite of all that in 2011 we were blessed with the ability to buy a house with a large lot that is much cheaper than renting in our area. Yes, it’s a fixer and maybe we didn't get as much done in 2012 as we would have liked but we had a lot of family time at home and had our best gardening season ever! We are also making some great friends here. Life has a way of rebounding and surprising you.
Do I still get sucked in by the 'this sucks' feelings? You bet I do. Lately it’s been heavily centered around our financial/monetary worth by way of comparison. It's hard to feel valued when you are sick on a regular but unpredictable basis and can't be what is considered 'normal' with a "regular" job and decent income. It’s even harder when you have to rely on others for even the basics sometimes. Very often you can't see purpose in the pattern of your daily life because it's hard to commit to things, big or small, when you don't know if you will be sick or just fine on a particular day at a particular time. It becomes particularly hard at times to know what your own value is in the world, the community, your family and even in yourself. You have to learn who you are and what you are capable of all over again to rebuild it. You also have to come to terms with your limitations. I know I can't work at a traditional job anymore and I miss that. Shopping, going to movies, and eating out are sometimes difficult; with all the travel, people moving around and commotion sometimes it makes me sick. Yes, I need extra help sometimes and yes it still kills me to ask for it. I'm getting better at it but when self sufficiency is your goal it gets really complicated. You do what you can when you can. Very few of my friends have followed me on this journey but the few who did are totally worth all the ones who didn't and I'm making new ones. Including all of you.
Without my disability a great many good people and things would not be in my life. We would not have this particular home. I would not have time to garden, help our minion as much as I do or learn new things. The rare occasions when we go out are indeed a treat to be enjoyed rather than something we take for granted; Even if I do get sick while out. In each day there is always a small moment when I am grateful. Grateful for my family, my beautiful children, our house, being able to still hear my grandson laugh, the sun shining just a certain way, even the bills that we pay for our house, food, warmth, lights, and to keep in touch with all of you. Most of all I'm grateful for all the opportunities that are still possible and open to us. There are just so many.
I can still learn and do so much and with that in mind I've decided that in 2013 instead of or perhaps as a part of the monthly book review I'd like to cover one new thing I'm learning each month. I do not plan out all my activities however since I got my first set of knitting needles for Christmas that will be my January topic. As a crocheter it should be interesting. I know that made a lot of guys groan but I promise to have some 'manly' guy info with it. Okay maybe not so manly but definitely guy centered information.
On a personal note I'd like to thank my friends at the Fighting for Courtney Step by Step page on Facebook for reminding me of all this when I had lost sight of it a bit more than usual and for all their inspiration. Keep up the good fight Courtney!
As always you can join the Facebook group, like the Facebook community page, and visit the website. All of these are conveniently called “Kaya Self Sufficiency”. I hope you have enjoyed this post and I hope you are getting better at providing as much as you can for yourself and for your family, group, or community.