Unseen Illnesses

[pushka]

Wow! I've just read The Spoons theory and it was really powerful.

I agree that this theory can be used to illustrate other 'invisible' illnesses, such as depression...I don't suffer from Lupus or ME, or Fibromyalgia, but I do have lots of pain due to Arthritis, Tennis elbow in both arms, and I feel exhausted most of the time, just carrying out simple tasks...I can really empathise with Christine and her spoons. Thanks for posting that link Charley.

[Iggy]

There are nights I can't sleep I'm in so much pain and it all feels to come from muscles. I toss and turn trying to find a comfortable position and just can't.

Those are the same symptoms my girlfriend had - she was diagnosed with MS. This was back in the late 70"s. In the 80's she was in a wheel chair and or bedridden. In the mid 90"s after a terrible car accident and spending months in the hospital with two broken legs and a fractured pelvis, they said her MS was in remission. She hasn't had a relapse since.

Pam, have you been tested for MS? Get off the tylonal PM and go on the store brand knock-off of benedryl. That is what is in tylonal to make it the PM. Take a store brand knock-off of tylonal for the pain, and the knock-off of benedryl to make you sleepy. The cost of both pills together shouldn't cost as much as the name brand PM.

I used to take which ever Name Brand PM that was on sale, to stop the pain in my hips and legs so that I could sleep. Then I was reading the labels and saw that benedryl was the sleepy ingredient. Check it out.

[Annabelli]

One day I was thinking about how hard it was not to have anyone to talk to about being sick and how death was becoming a reality. Now that I have been given that opportunity, I find that it is an overwhelming and difficult task. I have suffered with rheumatoid arthritis for many years now.

I cling to life everyday so that my children will have a home and a safe place to live and above all be loved. I have two children. My marriage came to an end before my youngest son was born. My family and husband’s family abandoned us and we have had to make it on our own.

The struggles that we have endured were about much greater issues than money. Can you imagine being a child growing up with a sick parent and no one to turn to. Always worrying that your children might become wards of the state.

Many years ago, when I was about 20 years old, I had a dream of being a feeble and frail woman making a long journey and being accompanied by a priest. This year I made such a journey and was accompanied by a priest, my son.

[sixpacktr]

One day I was thinking about how hard it was not to have anyone to talk to about being sick and how death was becoming a reality. Now that I have been given that opportunity, I find that it is an overwhelming and difficult task. I have suffered with rheumatoid arthritis for many years now.

I cling to life everyday so that my children will have a home and a safe place to live and above all be loved. I have two children. My marriage came to an end before my youngest son was born. My family and husband’s family abandoned us and we have had to make it on our own.

The struggles that we have endured were about much greater issues than money. Can you imagine being a child growing up with a sick parent and no one to turn to. Always worrying that your children might become wards of the state.

Many years ago, when I was about 20 years old, I had a dream of being a feeble and frail woman making a long journey and being accompanied by a priest. This year I made such a journey and was accompanied by a priest, my son.

Annabelli,

I hope all of the best for you. My mother had rheumatoid arthritis for many years, and I know how debilitating it was. She was very courageous just to get out of bed each day. She took steroids for years, and I think that was what killed her (10 years ago this year). I know the pain she was in (constant), but she rarely complained about it. I simply don't know how she did it.

Hopes are prayers are with you.

[Gabelma]

One day I was thinking about how hard it was not to have anyone to talk to about being sick and how death was becoming a reality. Now that I have been given that opportunity, I find that it is an overwhelming and difficult task. I have suffered with rheumatoid arthritis for many years now.

I cling to life everyday so that my children will have a home and a safe place to live and above all be loved. I have two children. My marriage came to an end before my youngest son was born. My family and husband’s family abandoned us and we have had to make it on our own.

The struggles that we have endured were about much greater issues than money. Can you imagine being a child growing up with a sick parent and no one to turn to. Always worrying that your children might become wards of the state.

Many years ago, when I was about 20 years old, I had a dream of being a feeble and frail woman making a long journey and being accompanied by a priest. This year I made such a journey and was accompanied by a priest, my son.

It must be great though seeing them all grown and in their 20s? I know my friends who have had child carers have produced the most amazing self sufficient children. I have a friend at college her Mum had ME and the blessing shereceived said her illness was forthe benefit of her children.... I see it in my daughter now she is having to be grown up and caring at 4 because of it I am so proud of her.

-Charley

[Gabelma]

<div class='quotemain'>Not sure what else to say but I know other people on these boards suffer as well and I felt it would be good to start a discussion.

-Charley

Charley,

You and I have discussed this a few times as we both have severe fibromyalgia. You always are such an inspiration to me and I rarely say that. Yediyd has it also, and the two of you make me feel like a whiny little five-year-old.

Pam, you asked about diagnosis. It is called a "waste basket" disease. Far too many people are diagnosed with it who don't really have it. I was one of them 15 years ago. I realize now I didn't have it then. What I have today is far more debiliating. The fatigue is bone crushing. The pain put Charley in a wheel chair. I rarely leave my bed because when I stand up my blood pressure falls and I'm often on the verge of passing out. Yediyd is in constant pain, and every time I talk to her she's gritting her teeth trying to bare it. I take pain meds as I could not stand the pain, and I think that's okay.

When I was working I would be so sick and in so much pain I used to go lock myself in the bathroom and lie down on the floor and sob. One of the most debilitating symptoms, for me, was the cognitive impairment. I would sit at my computer and the "fibro fog" would roll in and I could not concentrate on anything. It would overwhelm me, and my eyes would hurt, I'd feel like I had the flu, and I would head back to the bathroom. When I would explain this fog to people they would often comment "Everyone forgets things as they get older." This was much more profound than forgetting things.

I've had people comment to me that I don't appear to have the cognitive impairment now. This is true. I finally was able to quit working and let my body rest. I no longer had to force it to do things it could not do. When I need to sleep, I sleep, which could be 24-48 hours at a time. Conversely, I'm often up 48 hours at time as well. I just let my body tell me what it needs, and consequently my cognitive impairment has improved greatly. But if I have to do anything particularly complicated, especially when my body is not feeling well, the fibro fog rolls still rolls in.

Anyway, I wanted to tell Charley how much I love your posts and the affinity I feel with you. You know that as we've discussed it before. Yediyd as well. I love you both with all my heart.

Elphaba

I think for me losing my brain was the hardest thing - I also have something called Dyspraxia (its old name was clumsy child syndrome) as a result a reasonably intelligent mind was the only talent I felt I had. To lose it was devestating

Charley

[Annabelli]

I thought about those spoons and my spoons are somewhat different. Everyday my son will ask me to do a little something for him as he leaves for school. It's like getting a spoon.

I have some demanding dogs that will start barking if I don't get up to feed them and some very persuasive cats who want to eat too. Last year the neighbor's hound dog would chimed in. And then there is the squirrel who sits on the fence looking in the window and the cardinals who like to fly past the kitchen window. Two years ago, we were having an awful drought and I had to keep a big bucket of water filled for the wild life outside and a rabbit would be sitting on the doorstep waiting.

And of course there is the Lord who has many spoons. He inspired me to go to a neighbor's house and ask for a sewing needle one day. He was just so insistent that I needed a sewing needle and she had many. So I went to her house and asked for one. She went off into her house happy to give me a needle and when she returned smiling, she said that she had lost her blood pressure medicine and found it sitting beside her sewing needles.

The Holy Ghost is helping me to take care of a lot of stuff. Anymore I am doing a lot of things without even thinking about it because the Holy Ghost is guiding me. Some time ago, I kept getting a warning about the temperature of the dish water or shower. One day, my candy thermometer flipped into the dish water and the water was very hot. I did not realize that I could not feel heat and cold very much. Now I am very careful about it.

Thank you for your thoughts and prayers.

[Guest Yediyd]

Hi Pam,

I just read through this thread again, and I'm sorry but I missed your posts about your Sleep Apnea.

If you're not getting good sleep you're going to have the symptoms of fibromyalgia. They've done numerous studies where healthy people are deprived of sleep. Within two weeks they have all the symptoms: pain, chronic fatigue, cognitive impairment, hypersensitivity to lights, noise and movement.

In fact, that's a major problem with fibro. People who have it never go into Stage 4 sleep, which is the stage where the body repairs itself. Over time, this has a cumulative effect.

My point is, your sleep apnea would cause your body to have the same symptoms of fibro, even if you don't have it.

Elphaba

This is very true, El...I suffered from insomnia for years and still do. I believe that is the main reason and cause for my developing this Fibromyalgia. I never get into REM sleep. Every since I was a child, I sleep with one eye open. I don't know how to sleep any other way...even with sleeping pills, I rarely go "all the way out".

...as far as the pain...I have learned to live with it, I have suffered with this for many years. I stated having the systems in my 20's, but didn't get this diagnoses until my early 30's. I too, suffer from fibro fog...sometimes it gets bad!!!

...as I have told you, EL...I just FORCE myself to do things some days, I was very close to a wheelchair a few years ago...I started water therapy...that brought me up out of that pit, I still do the water therapy, I have also discovered the sauna at the YMCA REALLY helps me!!The heat penetrates my muscles and helps greatly... I wish I had access to a hot tub!

[Guest Yediyd]

I thought about those spoons and my spoons are somewhat different. Everyday my son will ask me to do a little something for him as he leaves for school. It's like getting a spoon.

I have some demanding dogs that will start barking if I don't get up to feed them and some very persuasive cats who want to eat too. Last year the neighbor's hound dog would chimed in. And then there is the squirrel who sits on the fence looking in the window and the cardinals who like to fly past the kitchen window. Two years ago, we were having an awful drought and I had to keep a big bucket of water filled for the wild life outside and a rabbit would be sitting on the doorstep waiting.

And of course there is the Lord who has many spoons. He inspired me to go to a neighbor's house and ask for a sewing needle one day. He was just so insistent that I needed a sewing needle and she had many. So I went to her house and asked for one. She went off into her house happy to give me a needle and when she returned smiling, she said that she had lost her blood pressure medicine and found it sitting beside her sewing needles.

The Holy Ghost is helping me to take care of a lot of stuff. Anymore I am doing a lot of things without even thinking about it because the Holy Ghost is guiding me. Some time ago, I kept getting a warning about the temperature of the dish water or shower. One day, my candy thermometer flipped into the dish water and the water was very hot. I did not realize that I could not feel heat and cold very much. Now I am very careful about it.

Thank you for your thoughts and prayers.

Wow. Annabelli!! I struggle with this as well!! I don't know how hot my bath water gets sometimes!! I love the heat because it is the only thing that brings relief from the pain...but I have gotten out of the tub with red, angry welts because I did not realise that the water was too hot!!! I take sometimes up to 4 baths a day, I hate pain killers, and hot water has gotten me through many a bad day...

[Annabelli]

Ouch! Yediyd....That sounds like the "soft ball" stage in candy making. You need to take caution to avoid burns and infections.

Our YWCA or YMCA offers adult swim sessions as does some of the high schools. It's not a class just some fun time to relax and splash, float, and paddle around in the water. Some Y's will waive the membership fee and some just charge non-membership fees (usually that is plus .50 cents or $1) and a swim session is usually a dollar or two. (you may think of it as costing you 4 to 6 spoons.....I think of it as quality time with good friends that I met there.)

We also have places where we can walk with other people. That's especially popular during the cold wintery months. It's free. You can even bring a lawn chair so it's not all about olympic walking.

Except for Quick Breads, my bread making days are over. Does anyone here use a bread machine? I have seen many at garage sales so I am leery about buying one (used or new).

[sixpacktr]

Except for Quick Breads, my bread making days are over. Does anyone here use a bread machine? I have seen many at garage sales so I am leery about buying one (used or new).

We have had one for several years, and I love it. You can either just let it do the mixing and kneading for you and then bake it yourself, or let it do the whole thing.

All in all, I recommend it, especially if you have physical problems with kneading, etc.

[CrimsonKairos]

A Bosch is the only way to go with bread.

[Guest Yediyd]

Ouch! Yediyd....That sounds like the "soft ball" stage in candy making. You need to take caution to avoid burns and infections.

Our YWCA or YMCA offers adult swim sessions as does some of the high schools. It's not a class just some fun time to relax and splash, float, and paddle around in the water. Some Y's will waive the membership fee and some just charge non-membership fees (usually that is plus .50 cents or $1) and a swim session is usually a dollar or two. (you may think of it as costing you 4 to 6 spoons.....I think of it as quality time with good friends that I met there.)

We also have places where we can walk with other people. That's especially popular during the cold wintery months. It's free. You can even bring a lawn chair so it's not all about olympic walking.

Except for Quick Breads, my bread making days are over. Does anyone here use a bread machine? I have seen many at garage sales so I am leery about buying one (used or new).

I have a family membership to the YMCA, it is just two miles down the road from us...we go all the time, my son loves the racket ball court!! My daughter and I love the pool.

...I have a bread maker...around here somewhere!!! The novelty wore off rather quickly!!

[Annabelli]

Thanks. Some of the things that I had read were that bread machines were loud and made irregular shaped loaves. I'm going to start looking for one.

A redneck joke suggested putting the dough in the driveway and running over it a few times with the pickup.

Said it would also work to tenderize meat!

During the winter, there are always those blizzards and snow storms that keep the trucks from getting to the grocery stores and bread is sold out quickly.

I like the "space bags" that LDS is using for food storage because I cannot use a crank can opener.

LOL I have the makings of a tool box in my kitchen.

[Moksha]

Mental Illnesses are both unseen and misunderstood. They have historically been the stuff of misdiagnosis and superstitious projections on the part of those witnessing the symptoms of the mentally ill.

[Annabelli]

Mental Illnesses are both unseen and misunderstood. They have historically been the stuff of misdiagnosis and superstitious projections on the part of those witnessing the symptoms of the mentally ill.

This is an extremely broad subject because you have the extreme cases of mental illness and extreme cases of mental development. Many people suffering mental illness have compound mental diseases.

People who struggle with some mental illness are very uniquely observant of their environment and this creates problems for them. While one shopper may walk through a mall and be unaffected by the strategies of retail marketing, someone with a mental illness will take in every concept out there. Retail marketing bases it strategies on Need, Security, Impression and Prestige.

Much of the superstition revolves back to folk lore and that is about as broad a subject as medical.

Mental Health diagnosis are based on symptoms and conditions and these factors in mental health can be very dominant or synonymous.

[Guest WhoShotJS]

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