Mental Illness vs. Physical Disease

This subject is really getting to me, especially recently. First, a very dear friend, who I haven't spoken with for a year but who knows how much better I'm doing asked me if I was walking yet? I was very hurt by this. Because my Mental Illness is finally under control doesn't mean my Physical diseases are cured!  Also I've had several doctors who when they find out I have a mental illness, treat me like my physical condition isn't real, it's just 'All in my head'. I have been told that my pain is a somatization disorder, which, basically is the same thing as psychosomatic or in simple terms; all in your head!

I am so frustrated!  Don't these idiots have enough education to know that mental illness is a completely different animal than physical disease? I mean, yes they are intertwined in some ways, but, they are also very different. It is possible for a mentally ill person to develop physical diseases!Until my current doctor, I couldn't get a doctor to treat my pain, I suffered for a year, feeling like I was going to lose my mind ( even more, lol) because of the intense, severe pain.

I have a condition called RSD/CRPS: (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome)  It's been a recognized condition since 1865 when a doctor in Philadelphia started noticing the symptoms in some of the soldiers he was treating in a hospital there.  It was then and for many years called; Causalgia which is latin for: Burning Pain'. The burning is just one, but the most awful, of a myriad of symptoms.

 It is not curable, though on rare occasions some people have gone into remission. I did, back in 2001.  I was diagnosed in 1998. I was in remission for 4 1/2 months. it was heaven!!!!

Then, the RSD Monster began to rear it's ugly head in an even feircer manner. Not only did the pain return but all of a sudden my legs would just give out on me and I'd just fall. This would happen on various occasions, without warning. Then, on the last day of 2001, I was in a car accident. I only got whiplash, but this disease can spread or get worse from the smallest thing, even just a needle prick, so within 2 months, the symptoms, especially the pain and falling got ten times worse. I couldn't go for the long walks I loved anymore, every time I walked I'd fall at some point, so we decided I should be in a chair to get around, after  I had fallen into a busy street and just missed being hit by a car.

That was 9 years ago and I've been in a chair ever since. For the first 6 1/2 years I would get around the house, holding onto things but now I can't walk at all.

What really sucks about RSD- I should say one of the many things- is that it's unlike any other condition. Like Fibromyalgia, which I also have and have had since I was 16, the more you move the better it is for you. But with RSD P.T. and movement only make it worse.  So, what do I do? I went to a physiatrist (A doctor of Physical Therapy) who knows alot about RSD, which is the first doctor I've met in Oregon who has even heard about it, had prescribed me a power chair because all the years of pushing myself caused carpal tunnel in both hands.

Back to the mental illness issue:

I have bi-polar type II, which is referred to as bi-polar depression. I've been depressed my whole life. but I have moments of either really happy and outgoing, even loud. Or moments of intense anger and frustration. but, mostly I'm just depressed.

When I began using a wheelchair, I took to bed and spent 8 years there. My son; Vincent helped me alot and all his friends knew me from visiting bedside.

Over a year ago, My stress at home was just out of this world! which only made things worse! My caregiver wasn't doing her job and my house was a complete mess most of the time, which due to a little ocd on my part, drove me crazy as I couldn't do anything about it. the depression got worse and the state came in and moved me into an adult foster home. the final decision was mine, but I was so bad off, I just agreed.

Something happened to me about 3 weeks after moving, I had no more stress, I had a new companion dog; Buffy ( my neice gave her to me for christmas) and I had someone to care for me and for the first time in years, I was calm and not depressed so much.

I decided to start fighting back against the desire to give up and got myself out of bed, I even put my laptop on a desk, where it still sits today, so I would have to sit up and use it, I wouldn't allow myself to lay down during the day, except for short periods to help alleviate the pain. I began taking pictures, crocheting alot, reading and just keeping busy.

Today, I'm still in the foster home. I'm quite happy, though I still suffer, of course, from the intense pain and fear I will never walk again, I get out of the house and go for rides to the store, or whatever.

The only thing missing in my life is my companion. she passed away last november and I'm still heartbroken and lonely for her. But, my caregiver wont allow me to have another dog. I just need to adjust.

I spend hours outside reading. I have found that as long as I have enough distractions, I can do one thing until the pain gets too bad, then move onto another thing, etc...

I like my life now. Whereas a year and a few months ago I was just wanting to die. that's all I wanted! now I want to live, I want to see my grandchildren someday, I'd like to transition into my own place again sometime.

I have hope! but more importantly I have a strong faith in the Lord! I plan on going back to church soon.

I want everyone who suffers from a IPS (Intractable pain syndrome) to know there is hope, just take the bull by the horns and refuse to give up and give in to the depression! Fight, fight, fight!

Blessings to all!

Margot

Up until February of this year, I had spent the previous 8 years in a self-imposed prison, of sorts!  When you're living it, you don't know why you're there, you just know that the pain and depression are all-consuming!

In july of 1998 I was diagnosed with RSD (Reflex Sympathetic Dystrophy) or it's new name: CRPS (C omplex Regional Pain Syndrome)  This was brought on by a simple, yet painful fall at work in which I sustained a mild contusion in my left knee. No biggy right? Wrong! The pain just kept getting worse. Workman's Comp. sent me to a Orthopedic Surgeon, who did  minor surgery, followed by alot of testing and Physical Therapy. 6 months later, the pain wasn't just in my left knee any longer, but in both knees and feet.  Not only that but there was a variety of pain, depending on the moment, the body part and sometimes the temperature outside.  The worse of which was the deep burning in my feet.  This is where the diagnosis came in.

I, then started seeing my PCP, who tried to help me control the constant pain with Morphine, tylenol #4 and Soma.

One day in March, 2001 my whole Church prayed over me and within 2 weeks the pain was gone!  I thought the Lord had seen fit to heal me! I was ecstatic!  Of course, I still suffered from the much less severe Fibromyalgia pain and continued with the tylenol #4 and soma for this. I immediately, got a job in the local hospital in apple Valley, Ca. where I lived at the time.  It felt so good to be 'almost' "normal" again! 4 months later, the pain started again and along with it came another very strange symptom; Falls!

I'd be walking along, minding my own business and BOOM! down I'd go! No warning, nothing!

I ended up getting fired from the hospital because I was missing too many days!

That's when I got one of my hair-brained schemes and talked my husband at the time, into selling everything we owned and moving to Oregon!  Actually, this scheme is one that, nine years later, I don't regret!  I love it here!  It is so beautiful and green!  

On December 31, 2001 we were in a rear-end collision and I sustained whiplash. No biggee, right? WRONG!  For some reason it caused the RSD to spiral out of control.  The pain was so much worse and I was falling a lot more!  By March, 2002 I was in a wheelchair and 8 years later, still am!

It's been so difficult to get Doctor's up here to treat chronic pain, even RSD, which is known as the worse chronic pain known to man!  All I could do for the pain, even when I was prescribed meds, was lay in bed.

In August of 2003, my husband left us and moved back to California.  My son and I were all alone up here and the poor guy had to take on the responsibility of caring for an invalid mother.  I hated it!  I'm sure he didn't care for it either.

In December of 2004, we got accepted into Government housing.  We got a nice little duplex. However, we had no help to move.  The Church Vincent had been going to for 3 years was too busy to help!  One lady, who had been giving Vin rides to church brought one load over, which is how we got our beds, couch, etc... then my brother and nephew brought a couple of loads over in his van, but it ended up we lost most everything!

For the 5 years we lived there, I dug myself deeper and deeper into my 'Cell' and rarely came out.  It was such a difficult undertaking just to get myself ready to go somewhere, just to be stared at with either; pity or dislike, that I gradually stopped going anywhere.  Actually, that had happened a few years before.  By the time we lived in our duplex, with the vertical blinds on my bedroom window, that looked just like a cell, I had stopped going outside at all, unless I had an appointment, but I even missed most of those.  I was dropped by specialists, counselor's and Psychiatrists due to my not showing up for so many appointments.

I always had one caregiver or another, who I relied on for almost everything!  The only things I did myself was get dressed and shower, and sometimes even then I got help. ( I did all my own pottying, lol thank God!)

In January of this year, 2010, Vincent moved down to No. California with my Neice Rossi and her family.  I kind of wigged out and the stress of running my own place, with a constant mess my caregiver wasn't taking care of and the worry that I would be kicked out due to some of  "The Kids", (friends of Vincent's who I kinda adopted) staying there without permission from the state, when my Caseworker suggested I move into an Adult Foster Care Home, I jumped on the idea!

I do kind of regret it now.  If I had been better able to handle things, I could still be in my own place, with all the things that meant so much to me, still with me.  But, on the other hand....it was the best thing I ever did!

I'm not sure if it was the removal of all the stress, the new combination of Psych Meds, the having to go outside to smoke or a combination of all of the above, but over the first 2 months I lived out here,  My life changed completely, for the better!  I started staying up, out of bed all day, besides the brief respites to lower the pain level.  I stopped watching T.V. during the day, for the most part, when for the 8 years prior, my T.V. was always on.  I began to do my Crocheting and working here on the computer.  I have a laptop, but I moved it across the room to my desk, so I'd have to sit up and work on it.  

I began keeping my room clean, making my own bed everyday, taking more baths, brushing my teeth and washing my face and doing my hair, every day!

I have to admit, I really let myself go in the 8 years prior.  I was in a state of almost continual deep depression.  Now, even on bad days, I take care of myself and my buddy: Buffy

I haven't missed an appointment in 6 months now.  I see my counselor every week, without fail, whenever I make an appointment, I go to it!  That is a huge deal for me!  I've realized that, although it is quite normal for Intractable Pain Patients to seclude themselves from the world, it's not necessary!

It helps my pain so much to function this well, to be self-sufficient.  My caregiver doesn't have to do much for me anymore.  All she really needs to do is: my laundry (but, I fold and put them away and make my bed), Cook and distribute my Medications.

I look forward to my future for the first time in many, many years!  I no longer am just waiting to die, but enjoying (for the most part) living!  I can't wait to see what's next for me!

I'm grateful to God, My son; Vincent and everyone who put up with me for so long, for sticking by me, although I must have been a real 'downer' to be around!

I've discovered a new hobby as well,  Photography. Just me, my dog and my $15 ebay camera and I start snapping.  I don't know anything about photography, but it's fun to try to find the right lighting and angles to make the best shot, not to mention the fact that it gets me out of the house and keeps me distracted from some of the pain!     Hobbies are important for anyone, they relax us when we're stressed, give us a huge boost to our self-confidence, not to mention self-worth and for those of us in chronic pain, they distract from the pain, if only for a short time!

I recommend everyone find a hobby. One of my favorite things to do is color posters.  You can buy the posters online, at different skill levels, buy some markers, I use gel pens and go to town! It's creative and gets those creative juices flowing.  Another thing is paint by number.  I've done a couple that were drawn by my favorite artist: Thomas Kinkade, they're a lot of fun!

The biggest lesson I've learned over the past 81/2 years is not to give up and don't think about tomorrow. Just live one moment at a time,  because otherwise, it becomes too overwhelming and it can overcome you all too quickly!