Tuesday, December 22, 2009

Me and relaxation

I’ve been meaning to write about how I have mixed feelings about relaxation and stress. Stress isn’t good based on current medical understanding. However, a lot of the stress relief/management techniques I’ve seen at least touch on muscle relaxation.
Part of how I finally figured out that I needed to be checked for EDS was that Mr. Wacky was working with me to help me understand what the doctors wanted when they said “relax your ”. I would get my arm or whatnot into a comfortable position but the doctors would be frustrated. Mr. Wacky worked with me until the muscles in my arm actually relaxed and what happened? I asked him “How is this relaxing honey? It hurts. I feel like my arm is pulling apart.” One subluxated shoulder and elbow later we decided it was time to do some hypermobility research.
I’ve tried meditation but I can’t stay awake. What seems to happen is that my obstructive sleep apnea kicks in and my airway collapses. When I talked to the therapist who taught me meditation I was told my falling asleep was a ‘therapy interfering behavior.’ Yes, she did know about my sleep apnea. I got very frustrated with myself feeling that I was subconsciously sabotaging my efforts. Combine this with not feeling much better physically (and in some ways worse) and I almost quit the class. Luckily I didn’t and more active meditations were the topic of the last few classes and I was much more successful with those. However, after a pleasant meditation session on the treadmill I would feel mentally better but physically awful. Originally I attributed that to the aftereffects of the exercise but the problem continued as I started to practice mindfulness more broadly.
I didn’t clue into the real reason for my mixed feelings about meditation and other relaxation techniques until I started to pay attention to how I felt after I used Flexaril. Like many people with fibromyalgia I don’t sleep well. Often I take a medicine to help me sleep and they quickly stop working for me so I’ve tried many. A few months ago the Benadryl I had been using to help put me to sleep and stay that way stopped working so I pulled out the Flexaril. It is a muscle relaxer that tends to be used be help people sleep. Well, initially I’d get about 12 good hours of sleep but for the next three days I’d scream in pain every time I moved and Mr. Wacky would come to me and put whatever joint fell out back in place. I’m not always the sharpest crayon in the box and it took me about five doses until I figured out what was going on.
So at this point I know that having relaxed muscles means that my EDS is more likely to act up. This really could explain why I honestly don’t like most physical relaxation exercises. Why do something that is neither fun nor good for me? While relaxation would seem good long term I think the short term increase in pain and the long term joint damage counteracts that.
This got me to pay more attention in general. I’ve had some very pleasant times recently and thus have been content and naturally relaxed. After a good night’s sleep with or without medicine I’d often be in a lot of pain. I’d thought it was from being so still but if I’d wake up in the middle of the night to roll over I’d often pop a shoulder out if I didn’t do it carefully. The biggest problem has been my toes, each morning I have to tug them back into place. All I can figure is that my muscles are relaxed in my sleep and so my joints are especially lax.
I’ve taken to making a nest of sorts for myself out of pillows. I’m surrounded on all sides and can’t easily move. This has forced me to wake up more fully if I want or need to change positions but I’m waking up in less pain overall. So, in theory I should now be safe at night now, right? WRONG! Last night I woke up with a band of pain in my right foot across the base of my toes. I couldn’t yell loud enough to get Mr. Wacky’s attention and somehow couldn’t even bring myself to try to put all the toes back in place myself. So I got out of bed and walked towards him until I got his attention. As I sobbed and apologized for bothering him he quickly and quietly tugged until I cried ‘Uncle’ and begged him to give up. Luckily by then he’d done enough that the pain started to ease although neither of us felt any pops. What happened? The weight of my blankets and comforter had pushed my toes back towards my body as I slept. *facepalm* I’m not even ‘safe’ in my own bed surrounded by my nest of pillows. I may have to get one of those contraptions for people with nerve damage in their feet to keep the covers from touching them. That just sounds like it will lead to chilly feet.
I’m almost scared to get too relaxed now. Well, the consequences of relaxation seem to undo relaxation rather quickly. I’m known for being wound rather tight and apparently this has served me well in terms of EDS. However, I don’t want to stay an anxious mess the rest of my life nor do I want to craft splints out of cardboard and duct tape out of desperation for every joint in my body. How do I relax my mind and spirit without relaxing my muscles? An ever better option would be to relax overall and still keep my joints in place. 

Monday, December 07, 2009

Ehlers-Danlos Syndrome and misrepresentation

I've sort of stepped back in my interactions with the chronic illness community in recent weeks because my primary diagnosis has changed. I feel like a fraud.
For about ten years I've believed that I've had something similar to Lupus and to save a lot of explaining I just said I did. I've been diagnosed with RA and UCTD (Undifferentiated Connective Tissue Disease) in the past.
At a visit with a rheumatologist I was recently told that my previous diagnoses were all incorrect. The doctor explained that my blood work should have more significant abnormalities by now if something was seriously wrong with me. Somehow my body just has a tendency towards unusually high white counts and a consistently high sed rate and other inflammatory markers but all that is meaningless.
So, according to him all I have is Fibromyalgia and he's never had a patient not get better who's actively done what they've been told. Well, I needed a topic change at this point so I asked him about my joints and was diagnosed with Elhers-Danlos Syndrome, hypermobility type aka type 3. According to him the EDS is a trivial thing with little if any bearing on my health.
Well, I won't be seeing that doctor ever again but he has done me a favor. Based on my research EDS isn't as trivial as he made it out to be and could very well explain a lot of my health problems.
Unfortunately, I'm the only one in my family with an EDS dx and my parents don't want to investigate the matter. Without a family history my GP won't do further testing to check me for the vascular type, type 4. That I have no family history of type 3 but still have that doesn't seem to change her mind.

I'm thrilled that I might have an answer to all the little problems. From the jaw that would lock and I've have to tug back into place from the time I was 8. To the hips that get all 'wrong' that I need help to fix so I can walk again.
That just makes it feel even worse that I've misrepresented myself all these years. No, I didn't do it on purpose. Yes, people do get new diagnoses on a regular basis. However, it doesn't seem like people are told they've been wrong for ten years all that often. It doesn't help that I didn't explain that I didn't have a firm Lupus diagnosis. I didn't even tend to add the ANA negative part all that often.
I could just slink away from all the friends I've made over the past ten years but I don't want to do that. I've meet really nice people who I can still relate to about being ill and all sorts of other things. I'm finally meeting people who are both sick and share some of my other interests like knitting, WoW, makeup, and having a dirty mind. I really don't want to start all over again. However, I do want to meet more people with EDS.

So, I'm 'fessing up. I don't have Lupus. If that doc is right, I don't have any type of auto-immune disorder. However, I'm not going to run away in shame for misrepresenting myself either. Mr. Wacky says that I haven't really misrepresented myself and that no one relates their diagnoses word for word but I'm having trouble believing him. (Plus, he's biased ;)

Thursday, June 18, 2009

Blogging Against Disablism Day

I have both a congenital sensory impairment (legal blindness) and a chronic illness (fibromyalgia and CFS/ME/CFIDS).
Frequently, both communities are grouped together since both things can be considered 'disabilities' however, their needs and concerns are different. I'm honestly not sure how effective this is and I'm not sure how well each group can understand the other.
Honestly, it is in the best interest of those with congenital and acquired physical/sensory impairments to promote the image that they can do almost anything with the right, usually minor, adjustment. (Such as a ramp, reader, etc.) The emphasis is on how basically capable this group is as a whole and that's how it should be.
I realize that physical/sensory disability can be associated with chronic health problems. Many people with spinal cord injuries have chronic pain for example. Plus, health problems can lead to disability.
Chronic Illness seems so different. Yes, it may require similar use of aids & appliances and the need for personal care attendants. However, I'm not sure how well the two fit together.
Personally, once I learned 'how to be blind' I pretty much had it figured out. I got the 'blindness skill toolbox' if you will and was able to go on with my life. If an obstacle came up, I usually even had an idea of what would help eliminate it. The support I needed was mostly about society and how to change it.
Then my fibromyaliga and CFS/ME/CFIDS kicked into full gear. Things became unpredicitable. Yes, I needed to learn a new set of tools but that box will never be static. My enemy is now multifold: my body, society, my doctor, and minute aspects of the environment around me.
One example is attendant care. A person with a disability may need attendant care to be able to go out into the community. They are frequently housebound without attendant care but once they have appropriate attendant care many things become possible including working. For a person with a chronic illness, attendant care won't necessarily enable someone to go out into the community or any other quality of life enhancement. Sometimes all it will do is help slow the rate of degeneration.

As for public appearances, I'm pretty sure that when I get out of my snazzy red wheelchair and take a few steps to my seat I'm doing a dis-service to another young person because it spreads the idea that maybe the next person who comes by will be able to do the same thing. Or when I use my chair on Monday but not on Thursday someone will get the idea that I was 'cured.' Should I not do what I can because it may somehow harm the public image of other people with disabilities?
I am usually pushed by Mr. Wacky. If I'm sick enough to need to be in my chair, I'm not well enough to push myself long distances. However, I doubt many people without a chronic illness would want to be pushed.
People with static disabilities want to present themselves as basically functional and competent.
People with chronic illnesses seem to want and need different things depending on the nature of their exact illness. Overall, they seem to want to be believed to be truly physically sick and to be believed about their current level of ability at that moment. Instead of struggling to be seen as more capable than they appear, the struggle actually seems to be the opposite.
While there is strength in numbers and collations are very effective in matters of civil rights, I'm just not sure that grouping disability with chronic illness is the most effective thing for both groups long term.

Tuesday, March 17, 2009

I will never see the ocean or ocean floor the same way again...

So, People for the Ethical Treatment of Animals has a new Sea Kitten campaign. (It is real.) I learned about this on Twitter but I can't remember from whom.
The site is cute. It feels like a lot of the sites I've seen aimed at children with bedtime stories and make your own sea kittens. Great, just great, misinform children about fish.
One of the stories featured a tuna who wanted to play with her friends. News flash PETA, Tuna are predators. So, yes that Tuna is probably having a whole lot of fun but I'm not sure her 'friends' are.
However, my last straw came when I was playing with the 'make your own sea kitten' feature. My tuna was dressed with lipstick, a leather jacket, and a mohawk before I noticed the optional litter box for me to place in the scene. Fish, oh pardon me, 'Sea Kittens' aren't known for bowel and bladder control, they eliminate in the water that surrounds them and any heavy stuff falls to the ocean floor. (Okay okay, I didn't look this up. I'm guessing.) So, hasn't PETA made the ocean and the ocean floor and any other body of water containing fish out to be one giant litter box for their precious 'Sea Kittens'? Why should anyone want to care about a litter box no matter how cute the things that use it are?
PETA wanted to get a new public relations firm for fish but I think they've really done a disservice to the public image of the homes of the sea kittens.
But, this talk aside, who approved this campaign? Was it submitted seriously? I half wonder if it was submitted to PETA as a covert attempt to undermine them from the inside. Well, I hope that's what happened but I doubt it is what happened and that makes me sad.

Sunday, January 04, 2009

My, you've lost weight

In 2008 I lost about 16% of my body weight. The changes to my body have been noticeable but what has impressed me more has been how other people have responded  to the changes in my body.
I have a standing weekly appointment to exercise in order to maintain my ability to walk and do other basic ‘activities of daily living.’ For a time. when I arrived I’d be told how good I looked because of how much weight I was losing. This scared me. Yes, I was exercising but I’ve been doing this with these same people for 2 years so the weight loss was a definite change not due to the exercise. No one bothered to ask me what was up.
I almost stopped exercising due to the constant focus on the size of my middle while I was busy trying not to throw up. I felt objectified and noticed only for the size and shape of my body.
I doubt I really looked good. People who saw me from the neck up, seated, or for the first time would comment on how poor my color was or how I wasn’t behaving normally.
Whenever I would express concern about my weight loss I felt brushed off. I was not trying to lose weight. No matter how fat I am or was initially, losing weight without knowing why is a real cause for concern. In my case, I was eventually diagnosed with gallstones that were causing chronic nausea and abdominal pain. You see, I was probably losing so much weight because I was too sick to eat and to process what I could eat. This lead to malnutrition.
The results of the weight loss may have been good for me but this has been expensive. I am not someone who can easily afford new clothing and I don’t own a sewing machine. Luckily, a kind relative donated clothing to me. I wouldn’t necessarily call myself prideful but I do care a little bit about how I look and know enough to be aware that wearing clothing that is 6 sizes too big is not only potentially embarrassing but isn’t going to help my image problems one little bit.