Invisible Illness...But Feeling the Pain

Some of the illnesses I have would be considered invisible illnesses. Nobody can "see" the pain I'm in or you are in. They can only see the manifestations of that pain such as high blood pressure, grimacing, limping as when walking but they can't really see what we are feeling. Those that don't have illnesses don't understand how it can effect every part of your life from how you view yourself to your world view. It is so important for me to try to hold on to hope and not allow illness to define me. In other words, I am a person with chronic illnesses the chronic illness are not who I am.  

Although no one can fully understand another's illness or pain be it from Chronic Migraine, Fibromyaglia, or Mixed Connective Tissue Disease, etc  there is a bond in knowing that you aren't alone in a chronic illness. Others are fighting against chronic illness and we can lean a bit on each other and on our Creator.  

I found the following video on a link from last years Invisible Illness Week 2011. I hope you enjoy it as much as I did the creator of the video said the following:

“Having an illness that effects every aspect of your life, relationships and how you view the world has been an eye-opening experience for me personally. After meeting with other people who went through similar trials, my heart broke. I know that some people just need to be HEARD. (REALLY HEARD!) I created this video – as an affirmation and an encouragement for others. I know that through trials, God has a plan to use them for good and that is hope to hold onto – through the pain." 

Taking a Break from Your Chronic Illness if Only for a Moment

Michaels of Lancaster Pa

Most Americans take some form of vacation every year. I have had "staycations" instead of vacations for a very long before this was even thought of by most as a politically correct option. I did this because there was no such thing as extra money in our home. Money was spent on school supplies for my children (i.e. shoes kids out grew, backpacks, etc.), food, doctor visits, and my medicine.


If we were lucky in the summer we took day trips in the area, mostly to things that were free (gas costs money, no surprise there!). As far as actual vacations, we tagged along with my sister's family and my mother down to the Outer Banks; we to the shore with my husbands family, and we took the kids to Williamsburg. In 29 years other than our honeymoon, that's pretty much it on vacations. But this week I need a vacation from my  illness.This past week was a horrible week for me; I needed a break from being sick, even if it was for a couple of hours.

Sketch of Alexander having a horrible day.* Source

As I love crafts and art projects, my daughter, Chrissie and I headed off to one of the two Arts & Crafts chain stores in Lancaster Pa. We had our choice between Michaels (which tends to be less busy because it is the newer of the two stores) or A.C. Moore. These two stores are actually located across the parking lot from each other. I wasn't in the mood for long waits in line or lots of noise so we choose Michaels.


At this point in time I didn't know that I made the best choice I ever could have made. Michaels has perks that AC Moore just doesn't have.Count yourself lucky if you have Michaels in your area (No more AC Moore for me!). Not only is Michaels  a great arts and craft stores in general, but in my experience, I have never found a store that was better equipped or more customer friendly for disabled customers.

The handicapped parking at Michaels is actually adequate for the store (well, accept on Saturday mornings after-all no place is perfect ). They have a checkout line for those in wheelchairs. The handicapped bathroom is clean.The aisles are wide enough for wheelchairs and keep reading because even better things were to come. It was at Michaels that I had a lovely break from my Mixed Connective Tissue Disease and for a change I didn't have a Migraine.


The Manager on duties name was Misty Mutz. She found me a wheelchair and it even had a basket that went over the top of the chair. Unlike most store wheelchairs, this one wasn't old and rickety. The chair was comfy and sturdy. Misty asked me what I was looking for and took the time to push me to where I wanted to go and then she pushed me to go to look for my next item. I felt bad that I was taking up her time. I'm sure you've heard the old break up line, "Its not you, its me"; as I didn't want to take up any more of her time  I told her I could get where I was going on my own. Although, I would have loved to have spent the afternoon with her for she was a most pleasant person. Shortly after Misty left, my daughter returned from her wandering.


We had so much fun. At times, my daughter became "pushy" as she pushed me around the store. At other times, I raced up and down the isles just because I could be in a store and get around by myself. Although, I was in a wheelchair I totally forgot about having Mixed Connective Tissue  Disease until I was totally worn out from racing about in the wheelchair.


During my time at the Michaels, I laughed and giggled like a kid. I flapped butterflies through the air; believe it or not phobic me even touched and played with stuffed plush spider and made fun of myself. Not once did I think about doctors, medications, illnesses, or would I be hurting from the activity that I did tomorrow.I enjoyed the happy present that I was in.

Source

Living completely in the moment, when things especially when things are going well (you should try to live in the moment most of the time; however, when having a painful procedure it is helpful to think that it will be over soon...) I think this is the key to taking a break from my illness and living in joy. I need to fully live in these happy moments whenever they present themselves. I can't change the past. I really have no control over the future. Yes, I can try to influence it by taking my meds and taking the best care of myself possible but other than that it is the best I can do. SO if I ever feel like the boy, Alexander, and I am I'm having a terrible, horrible, very bad...I think I'll move to Australia kind of day...I think I'll take an illness break an perhaps go to Michaels again. Then I can go shopping for art projects; if I'm very lucky I can go wheelchair racing in the isles while my daughter tries to keep up on her two legs against my 2 wheels.

One of my favorite books when I was young. Source*

Service Dogs for Invisible and Visible Illnesses

My dog Dixie

When most people think of service dogs they think of guide dogs that assist the blind.  Oh, I know service dogs can help with more than the blind but I didn't have a complete picture. Now my own dog, Dixie, she helps me out as a informal service dog; she is not certified therefore I can't use her help in public. Dixie has had not any formal training; however, she helps me with getting up from a chair, helps me up and down the steps, and she monitors me when I'm really ill (she knows to pester others in the house if I need help). She has helped me get off the floor a time or two (Yes, I hear you, very funny, "She's fallen and she can't get up). It wasn't until I met my daughter's friend, Elise, that I began to more fully understand just what service dogs can do. 

Elise is the Disability Advocate and Volunteer Trainer at Phoenix Assistance Dogs (PAD). She also has a seizure alert dog. Elise began to open my eyes as to what all service dogs can do. By legal definition, a service dog is one specially trained to lessen the effect(s) of a disability. This includes — but is not limited to — disabilities such as: visual, hearing, mobility, seizure, and "invisible" disabilities that are debilitating, but not necessarily obvious to the public. 


Although guide dogs have been use since the mid 16th century, in the 20 years service dogs have expanded their roles. Beside guide dog work, they can help with balance issues, mobility and wheelchairs assistance, hearing, seizure, and migraine alert, they can calm those dealing with anxiety disorders, and assist those with dissociative disorders to become grounded. 


There are close to  180 organizations that train service dogs for those who are disabled. Some are non-profit and do not charge for their dogs but others are for profit. The bad news is that the waiting lists for the non-profit dogs tend to be long. It often takes 2 - 5 years for your name to come up. Dogs that you get through these programs are thoroughly trained and screened. These programs offer follow and continue to help re-certify the dog on a yearly basis (this is an option not a requirement).


It is sad to say that not all dogs make it through the service dog program. Some dogs just aren't service dog material for one reason or other. There are trainers that can assist you to train your own dog; however, you run the risk of choosing a dog that may wash out. And then what will you do. If you want a service dog, you will need to carefully consider the pros and cons of self training program vs a program trained dog.

I know that I don't want to risk getting attached to a dog and then have to give it back. So I don't believe the owner training program is for me; physically I can't handle it either. I am involved in a program where I can choose either the owner training program or I can have them raise the puppy for me. I know for this particular program the waiting list is about 18 - 24 months for a program trained puppy. Right now I am fairly certain I'll have them raise the dog, but I'll keep my options open.

Elise and her service dog Burke

Life is Hard

Let's face it whether it is a chronic illness, physical or mental, visible or invisible or you are permanently disabled, life is hard. Who isn't feeling the pinch of the tough economic times that are, literally, all around the world? Many families (it almost seems, most families) are dysfunctional. This song has brought me comfort when I have felt hopeless and helpless. It is call "Life is Hard". It is sung by Pam Thum. I found this lovely recording on YouTube.com, It helps me through when life gets too hard.

Promoting Understanding of Chronic Illnesses

Source

There are millions of visible and invisible illnesses out there. There are even ones that medical science hasn't even named and which they are totally baffled by. I should know it took years for them to diagnose me. 

My symptoms reared their ugly heads when I was a teen and then went into remission. Periodically they would pop up and then go away. In October of 2006, they came to stay. However, I wasn't until 2012 that I was finally diagnosed with Mixed Connective Tissue Disorder. Mixed Connective Tissue  Disorder has overlapping features of Lupus, Rheumatoid Arthritis, Sjögren's, Polymyositis, and/or Scleroderma. 

Over the years, I've been told that I have been faking my disease by some people. I've also been told it is all in my head (yup, that's where Chronic Migraine's resided). I have been told by a dear friend, "I don't think you want to be well". Still others have told me that I don't have enough faith. Still others want to lay hands on me to be "HEALED". And when I wasn't, it was because my faith wasn't strong enough. Doctors have argued in my presence as to which of a variety of diseases I have and then because I was an RN have them say, ""which one of these do you think you it is" I must seriously consider never going to that ER again)? 

Yet at at some point or other for whatever reason, somehow someway the person with disease (me) is found defective, guilty, and/or lacking in some way because the medication/treatment isn't working and according to the assumptions of friends and family members you should be well. These statements, although said with the best of intentions and are made in order to motivate us to health, are hurtful. Until now I hadn't found a good way to explain chronic exhausting long term pain to them.  That was until I came upon a video which explains Lupus and other chronic illnesses through the story of Spoon Theory. I hope it touches your heart and the hearts of your loved ones as it did mine. 

Character picture and video are provided by Christine Miserandino. The video is available in this format on youtube and a slightly differnent format on the website butyoudontlooksick.com

Migraines or They Shoot Horses, Don't They?

Public Domain Photo

For my sixteenth birthday, my dad took me to the racetrack. I was shown the horse that he and a friend owned. The race was explained to me. Unfortunately I also learned that when I horse was hurt and was in a great deal of pain, instead of medication or operation and rehabilitation, the horse was shot and killed. The killing was considered a mercy killing. So the answer to the question is, "they shoot horses, don't they?', is yes.

I don't think that there is one person on earth that has endured chronic pain, a chronic debilitating illness, that hasn't wished that someone wouldn't just metaphorically, "take them out and shoot them". 

"The nationwide study of 1,007 migraine sufferers was conducted by The Gallup Organization for Cerenex Pharmaceuticals. It found that the pain of migraine is so excruciating that 35% of sufferers indicate that they have wished they were dead during an attack". 

This contemplation of death is not evidence of a lack of faith, or a lack in willingness to be "healed"; it is the state of the human condition when face with overwhelming pain. It isn't really a death wish. Be it medical or physical pain, we just wanting the pain to stop.


My therapist told my a story about his mother. Both of his parents were missionaries and had to go out on visitation on a day his mom had a migraine. The day was bright, sunny, hot, and the road dusty. As they drove over the rough and dusty road, they past a cemetery. His mother was in a lot of pain and nauseated; she indicated the cemetery and said, "I'd rather be in there". She was implying it would be better that she were dead then go on living.


I'm lucky. I have an excellent therapist. I have been going to him for sometime. He has a good understanding of what chronic illness does to you and how it impacts you life. The follow is a quote from the Facebook page for Chronic Migraine Awareness. Other the part about migraines, the quote could apply to any chronic disease:

along with migraines most of us carry around a great amount of guilt of failure.....we feel it from letting down our families, friends and coworkers......we have lost our jobs and relationships because of pain due to our migraines ....

Severe migraine attacks are classified by the World Health Organisation as among the most disabling illnesses, comparable to dementia, quadriplegia and active psychosis (Shapiro & Goadsby, Cephalalgia, September 2007)...this is not just a headache

To many people think that those with a chronic illness should be able to just suck it up and go on with life as usual.  This is the "invisible illness" trap. If they can't see it, touch it, or measure the direct result of it, many in your life think you are malingering. You need all the help in your corner you can get to face your disease and to try to keep some semblance of a positive attitude. 


If you haven't found someone in your life that understands how your disease impacts your life, I suggest you find a therapist. t is important to find someone in your life that "that really gets it". The are knowledgeable about resources in your area that are available to help you. Mine helped me through the process of applying for Social Security Disability. And he has helped me to accept my diseases. Asking for help isn't a sign of weakness but rather a sign of strength. If you need help, choose to reach out. There is plenty of help out there.

Photo of hands from the Online Homeopathy and Psychological Consultation Center
*http://homeoall.com/individual-personal-psychological-counselling/