Busy

Work, physical therapy, appointments, kid events, performances, shopping, volunteering, parties.  This time of year is notoriously busy.  I find I like to stay busy, and the Nov/Dec holiday rush makes that easy.  But, juggling that with chronic illness is becoming more difficult as my symptoms become more demanding.  I don't want to say, "no," but the risk of extreme physical fatigue made it important for me to learn.

Staying busy is a coping mechanism for me.  Having a schedule and knowing what I need to do gives me something to focus on besides the ever-present pain. I feel productive and useful.  Carefully balancing mental and physical activities allows me to rest my body and use my mind.  Some days I am better at this than others, so I take each day as a learning experience and use my successes and failures to improve my ability to stay busy.

I feel guilty when I say no to an invite or activity.  Yet, I feel worse when I say I'll do something then have to cancel because my body is too tired.  I see others my age and older able to be busier than me and feel I should be able to balance my activities that well, too.  But, I cannot.  Because EDS makes me different, unique.  Because my symptoms are not as predictable as I want them to be.

Life with a Chronic Illness

So much has happened since my last post four years ago.  Children aging and being diagnosed.  Me aging and learning more about EDS and its co-morbids.  My husband learning to be my care giver, while both of us adapt to my changing physical abilities.

Ready to join me on my continuing journey?  I welcome you whether you've followed me in the past or are new to the adventures.

My First Craniosacral Therapy Session

At my last visit my PT suggested I have a session with her partner so I can try a different technique than Rolfing.  Her partner's PT speciality is Craniosacral Therapy.  Since this was not the first time Craniosacral was suggested to me, and the first time the therapist was conveniently located, I decided to give it a try.

We started our one hour session with some core strengthening exercises to help stretch my spinal curves and improve my balance.  This did not go well.  As with many stretches, I was not feeling any tension or pull in my muscles when we worked with my scoliosis curves.  When we switched to some deep core strengthening the left side of my back panicked and started spasaming.  Of course, this isn't an area that should react in such a way when working with the pelvic muscles, but I've learned to expect the unexpected when it comes to my body and what should be "normal."

Since my body was now in too much discomfort to continue (it wasn't really painful, but too distracting for me to isolate specific muscle groups) we switched to Craniosacral.

Whereas Rolfing involves force and strong repositioning of the body, Craniosacral involves light touch.  It reminded me of meditation sessions I had with a yogi many years ago; as I would meditate she would work with my chakra through gentle pressure at various points on my body.  Today, I easily slipped into a meditative state while my therapist worked with points along my spine from my sacrum to my skull.  While she worked I felt stress, tension and, yes, even the muscle spasms melt away.  I was left with a deep feeling of peace, and much of the daily pain I live with had minimized further into the background than I typically keep it through sheer determination.

Craniosacral Therapy does not always work immediately, so immediate relief today was a benefit to my body not always reacting "normally."  I will likely see her twice more this year to see if I will experience more or prolonged improvement.

I did find it a nice change, however, to leave a physical therapy session feeling this good and not sporting a few new bruises.

Trust Your Instincts.

About 18 months ago, when I began an earnest push to get my medical needs under control, one diagnosis bothered me.  It didn't make sense to me, and didn't sound right.

I was informed, by the only pain specialist at my local hospital, that the pain in my hip was bursitis and the solution was shots of cortisone.  Though what the doctor said was logical, and he was the medical specialist, not me, it didn't FEEL right.  Other diagnosis, even from this doctor, made sense, but not this.  But he became defensive when I pushed for information and I had to go out on my own to learn more.

The more I researched bursitis, its causes and symptoms, the more I felt I was right.  The pain was not constant, and the symptoms varied in ways contrary to what I read were typical.  I began asking other specialists what they thought.  Unfortunately, the more common response was to ask the doctor I saw first since he knows more than they about bursitis.  Since, at that point, I had independently discovered reasons for several problems that he had not considered, or at least suggested, and found non-pharmaceutical relief for these, I no longer trusted him at all.

Then I had a rolfing appointment during one of  these pain flare-ups in my hip.  When I explained the situation to her, my physical therapist gently analyzed my hip.  An amazing weight lifted from me, an "ah-ha!" moment, when she pointed at a spot about an inch away from the pain and told me that was where the bursa sacs are located and they are not inflamed.  Turns out I have a recurring muscle knot.  The muscle work she did that afternoon relieved the pain tremendously!  I have some physical therapy ahead to further relieve the pain and, perhaps, even keep it from recurring.

  The more I pursue my needs as an EDSer, the more I learn to reach deep inside my psyche and trust myself. I am thankful I trusted my instincts and refused treatment for bursitis.  It would have been a waste of resources, medical and time,  and all for naught.

Learning to Manage Winter Pain

Winter typically means large amounts of pain and frustration, but I'm finally learning how to manage both.  My techniques include:

• Rolfing -> I'm continuing appointments despite some bruising from the deep tissue work.  I notice my muscular structure more now than before, and feel like I am fighting to keep my hard-won gains in the battle to stand straighter.  In response, my rolfer and I agree to make visits more frequent, once every 2 weeks instead of once a month, in hopes to help my body "remember" what it *should* be doing.

• Warmth -> most people seem to prefer cold on a soft tissue injury, but for me, especially in the winter, this results in more pain as my capillaries collapse.  So, I am trying to keep myself warm before I notice I'm cold.  This is currently working with the assistance of flannel lined pants/jeans, fuzzy slippers, flannel sheets, and not being afraid to wear gloves indoors.

• Staying active -> the more I hurt the less I want to move.  I'm fighting this instinct by continuing to move despite the discomfort.  This idea came from a friend whose child has juvenile rheumatoid arthritis and staying active helps minimize the flare-ups.  I figured it is worth a try.  My biggest effort is walking since yoga during the winter still results in dislocations.

• Laughing ->   they say laughter is the best medicine, so I look for something to laugh about each day.  Occasionally, this results in jaw pain, but I think it is worth it.

Dislocations and subluxations still occur, but I feel like I am managing them okay at this point.  Usually, when I see the arctic cold descending into my area of the country I cringe and cry, then am miserable until spring thaw.  This year it doesn't seem as intimidating.

Thoughts for Thanksgiving

This morning I read an article, When Poor Health and the Holidays Collide, by Toni Bernhard, J.D., and it ignited a trail of thoughts about things for which I am thankful.

I am thankful:

• for my family's support when I need to rest.
• that I awoke this morning with minimal pain.
• for my children, who help me in the kitchen even when it is not a holiday.
• for the opportunities for health care and support I can access locally.
• for the woodpecker at the suet cake hanging outside my window, who always is nearby when I need to see a splash of color.
• for spontaneous happenings that make me laugh.
• for the warning signs my body gives before I sublux a joint.
• that I have learned to listen to my body's needs, and am learning to attend to those needs.
• that I can still type.

I wish everyone a warm, healthy, and happy Thanksgiving!

Living with Chronic Pain

It took me a long time to admit that I have chronic pain.  Pain that doesn't end.  Pain that is a constant companion.  Pain that masks new injuries, unless they themselves are more painful than the background noise.

But now that I acknowledge its existence I am learning better how to live with it.  For example, I spent last weekend resting.  After injuring my hands I knew I would need to take it easy, but then was laid flat by a headache.  Two days of nursing my needs for rest left me exhausted, but feeling emotionally okay and ready to face the week.

Then I encountered the poem, Broken, by Angelika Byczkowski, who also lives with EDS.

It helps to know that, when living with a hidden illness and battling chronic pain, we are not alone.  We can be strong, even when we weep.  We can reach out and find others who do understand.
 

Problems with EDS and Rolfing

So far, I've had nothing but good things to say about rolfing.  I have, however, realized that one problem I consider minor should be mentioned for the benefit of others who would not think so.  Bruising.

On symptom of  EDS is easy bruising.  In my case, this is confined to some areas of my body - other regions being less likely to bruise in similar situations.  Not all EDSers have similar bruising patterns; ranging from severe bruising from a minor bump to little or no bruising from a major fall.

Rolfing is deep tissue work, and I have, on several occasions, found bruises after a session.  At this point, I consider this a minor inconvenience compared to the overall success, but not everyone would agree.  As such, I wanted to make sure I mention it in case others are considering rolfing.

Rolfing Session 6 and Autumn Pain

As happens each fall, my body is reacting to the colder weather by stiffening and aching.  However, after a few months of rolfing sessions and my new, higher lift for my shoe I am noticing the pain is different.

Typically I would experience pain in my upper right back and neck.  There is a small amount of stiffness there, but no more than all summer.  Though that area has not become painful the lower left area of  my back has.  This is not an area where I typically have much pain, ever, so it has me concerned.  After my pre-session evaluation today I was reassured because, whereas the pain is unusual and uncomfortable, there is noticeable lengthening in my lower spine! 

My other area of pain at this time is still minimal compared to what it was last winter, but any hip bursitis is too much for me.  Last winter was the first time I experienced it, and I was hoping it was gone for good with all the therapy I am doing.  We worked with the hips today and, hopefully, I can lie on that side tonight without discomfort.

Today we did nothing "new."  Our focus was on correcting areas to minimize pain and on more with the center line.  Though I have not noticeably taller after sessions I am also no longer shrinking between them. 

I have 3 weeks to the next session.  Cold, wet fall weather is settling into the region and threatening to settle into my soft tissue, too.  My goal during this time is to stretch at least a little each night and try to minimize the fear of the pain.

Taking Winter One Day at a Time

I wish I could say that things are getting easier. At least it seems that EDS is getting more manageable.

I think the biggest help has been in the area of pain management. If I can keep my pain under control then I don't seem to have as many episodes of clumsiness or exhaustion. What is seeming to help the most are little things that I wouldn't have expected to make such a big impact.

For example, keeping a pair of thin knit gloves around and remembering to wear them whenever I go out (even if just to take out the trash). For longer excursions outside or even driving I have found that Isotoner gloves are amazingly comfortable, keep my hands warm and even help stabilize the loose finger joints. Now, if I could just find a pair of gloves that allow me to operate the latch on my dog's leash!

Another thing that is helping is to remember to rest. Sounds silly, but the little change of stopping and lying down for 30 minutes instead of pushing through until I complete something works wonders! I am only able to do this on the weekends, but it helps enough right now that my pushing through the work week isn't leaving me as worn out by Saturday as it used to.