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Blog > Thoughts > Other's Thoughts > Chloe's Thoughts > In a Wheelchair; Having a Disability

In a Wheelchair; Having a Disability

Written by Chloe on Saturday, January 2, 2010

I’m having a meltdown; yes, right now. It’s two days after Christmas, and apparently time for major weeping fits. Hesitation creeps in. Is it okay to use this website as my personal journal? It can get embarrassing to make myself so vulnerable. My excuse is that BIID deeply infiltrates every aspect of my life.

Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.

It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.

That was a poem by Emily Dickinson.

Shoveling snow in the parking lot at work really wasn’t a good idea.

"All living souls welcome whatever they are ready to cope with; all else they ignore, or pronounce to be monstrous and wrong, or deny to be possible."

That was from "Dialogues in Limbo" by George Santayana.

Does this seem familiar? How many of us have tried to ignore BIID? Or thought that it is just not possible? Or believed it to be monstrous and wrong?

Eventually my readiness to cope with BIID revealed itself. Now I welcome it; truly so.

After the acquisition of fibromyalgia, it took me a while to accept that I would wake up in pain every day for the rest of my life. Impossible, monstrous and wrong! Do I welcome it? Hmm. At least it gives me some insight. If somebody told me that they wanted to have fibromyalgia, my first reaction would be to say that they don’t know what they are talking about, they are crazy, and they should get help. Does this sound familiar? It is exactly what some people with paraplegia have said on this website to us. I can truly empathise with where those sentiments are coming from. However, seeing both sides, I understand that they arise from a lack of self acceptance, together with not thinking things through deeply enough to comprehend that there may be a different perspective from one’s own.

I am attempting to incorporate fibromyalgia into my self image as someone with paraplegia. There is a disconnect, despite its necessity. I am definitely not there yet. My self image is that I can hand cycle up Mount Kilimanjaro. This is so far from reality. I can’t even shovel snow for ten minutes without triggering a lot of pain.

As part of getting a handle on this I reread the book "Making Sense of Fibromyalgia" by Daniel and Janice Wallace. HA! Too bad it doesn’t make much sense. Nobody really understands where the intense pain and fatigue comes from. The laundry list of associated comorbidities is long and bizarre. Here are some that I have:

• Bruxism. Persistently grinding one’s teeth. My lower retainer is designed specifically to ameliorate this.
• Hearing Loss. Fibromyalgia per se is one of four possible things contributing to this for me.
• Decreased Noise Tolerance.
• Costochondritis. Pain where ribs attach to the sternum, especially with a deep breath.
• Joint Aches.
• Muscle Aches.
• Muscle Spasms. For me, fibromyalgia related muscle spasms are limited to my upper back.
• Cognitive Dysfunction. This could be a matter of pain, or maybe recent concussions, or maybe I’m just getting senile.
• Poor Multitasking.
• Referred Pain.
• Major Depression. 58% of fibromyalgia patients.
• Anxiety Disorders. 70% of fibromyalgia patients.
• History of Obsessive Compulsive Disorder.
• Seasonal Affective Disorder.
• Family History of Depression. My mother, father, sister, and a couple of cousins.

I quote from the book: "Friends, employers, and loved ones often have difficulty believing that they have so many complaints." Yeah, no kidding! That’s why I try to avoid complaining, or even talking about it much. It would embarrass me if this writing was construed as a complaint. It’s not meant as such. It’s just the way it is.

The book has a useful list of dos and don’ts , most of which I found out the hard way:

• Don’t do any vacuuming. (Ah, that’s a good one. I never liked doing it in the first place!)
• Get help carrying in groceries. (This kind of stuff bothers me. It makes it seem like I’m helpless or lazy.)
• Make sure seats have armrests. (That’s why my wheelchair has armrests.)
• Use automatic transmission. (Comes in handy if you’re paraplegic too.)
• Don’t reach for things. (I’ll come back to this.)
• No heavy lifting or pulling. (This is probably where shoveling snow comes in.)
• No vigorous massage. (I’ve made this mistake too many times.)
• No weight lifting, rowing, jogging, tennis, golf, bowling…
• Don’t be shy about using braces, splints, or slings. (Ah, my favorite one! The odd thing is, I AM shy about using assistive devices for fibromyalgia, whereas I’m not in the least bit shy about using them for BIID. It took some psychotherapy for me publicly to use assistive devices for fibromyalgia. I’ll come back to this too.)

Later in the book there is another summary: "It is important to avoid excessive lifting, reaching, twisting, standing, bending, overhead use of arms, and squatting. Consider using supportive braces…" One of the hardest things has been learning how to say "no" when people ask me to do something. What looks easy to them may not be for me.

I knew that the intersection of fibromyalgia and BIID would have to be addressed in due course. The time has come to get real and deal with it. Fibromyalgia and paraplegia both have to be integrated into my self image and lifestyle.

It is nice when the same assistive device benefits both BIID and fibromyalgia. A wheelchair helps avoid both standing and squatting. My leg brace has almost eliminated fibromyalgia pain in my left leg.

"Don’t reach for things." How do you not reach for things when you are in a wheelchair? Part of the problem is psychological. In the cafeteria line at work I reach for a knife, and salt, with my left hand. It doesn’t help that I have short arms. I often get asked if I need assistance, and I always say no. I’d rather cause myself extra pain than be seen as dependent. The torn left rotator cuff from July doesn’t help. Hanging on a tree branch with my left hand in December doesn’t help. Reaching for the salt could push things to where I’m not able to wheel at all. You ARE dependent, Chloe. HA! Stuff that into your precious self image!

Sometimes I need to wear a sling; but I don’t. There are problems with wearing a sling. How do you propel and maneuver a wheelchair with one arm? Well, it can in fact be done. However, even with practice I find it bloody difficult. There are also psychological problems. It’s the same thing with being resistant to getting a hearing aid. Now we’re getting to some core issues.

I have a problem with appearing "too" disabled. Among several components of this is paranoia that people might think I’m making stuff up. I don’t have a problem with my paraplegia paraphernalia. It never crosses my mind that anyone might think I’m pretending about the wheelchair or leg braces. No, It’s the sling and hearing aid I would worry about. Why? Well, I have baggage. There is a long history of fibromyalgia being dismissed by (invariably male) physicians as female hysteria. 90% of fibromyalgia patients are women. Here’s another quote from the book: "Fibromyalgia is a formidable syndrome that can lead to loss of self esteem. Hurting and being tired all the time takes its toll." I have psychological trauma from my pain not being taken seriously by physicians.

If I am talking with someone face to face, nobody would ever guess that I have hearing loss. Then if they look away and I can’t make out a word they are saying, there is sometimes a look of disbelief like I must be making it up. People can grossly underestimate the contribution of lipreading.

Perhaps another factor is that paraplegia is far more integrated into my self image than is fibromyalgia or hearing loss. This has had positive feedback by nobody ever doubting my non-existent paralysis.

In addition I have horror of anyone feeling pity for me. "Oh, look at the piteous deaf cripple in a wheelchair! Poor woman can only use one arm!" Urgh! I’m trying to work through the psychology here. Dante! Where are you? Help me out. Why am I having a problem with this?

On average, people with fibromyalgia have two thirds of the muscle strength relative to what would be typical. This seems about right for my arms. However, my legs are much stronger than average; they always have been. Don’t you love irony? Well, it’s better than ironing. Even the left leg, noticeably weaker than the right, is probably well within the usual range. But it is not part of my self image to be a weakling when it comes to getting around using my arms. Get real, Chloe! You don’t have a choice about it. You are never going to be one of those hard core wheeler chicks that you imagine yourself to be. Deal with it! At the end of the book it says "Fibromyalgia patients should not give up hope." Yeah, whatever.

I’m not convinced that any of this was my reason for crying.

Sometimes it’s just a good time to cry.

I’ve stopped crying now.

Tags: Assistive Device, BIID, Braces, Depression, Fibromyalgia, Hearing Loss, Pain, Paraplegia, Wheelchair

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