Driving and Disability

Meloukhia wrote Stuck, which is a post about hir experience with a panic attack whilst driving over a bridge, and the post alongside the comments got me thinking about driving in general.

I can’t drive. It never used to be a problem, but it’s rapidly becoming one.

My younger sister and brother both learned to drive as soon as they turned 17. I used to feel quite pathetic in comparison–I’ve had problems with anxiety and social phobia since I was a teenager, although it didn’t become truly bothersome until I turned eighteen. That was a particularly gruesome time, and given that I would have panic attacks at the thought of leaving the house, learning to drive was out of the question. I’ve thought about getting my provisional licence in the past, but only in a vague, wistful way–with no actual motivation to get up and do it.

Learning to drive is still out of the question. Although my anxiety problems aren’t as bad as they were (I’ve been working fairly consistently for the past few years, which is something I never thought I would be able to do), it’s still safe to say that I would not be ok with driving. Alongside my mental health issues (which I believe I would need to report to the DVLA, if I were still in the UK), I also have dizzy spells, muscle spasms and fatigue/pain issues that would make driving impractical.

It never used to be a problem. I’d find it inconvenient, sometimes, and a bit frustrating if I wanted to go somewhere on the spur of the moment, the way my brother and sister could. The way my friends did. But for the most part, I could get everywhere I needed to go by bus or train, and the journey would never take too long. I could console myself for any inconvenience with the smug thought that at least I wasn’t contributing to pollution or congestion.

Now things are a bit more complicated. I’m not well, for starters, and I’m in Australia. One thing Australia has that the UK doesn’t is space. Oodles of it. Brisbane sprawls; and my specialists are dotted all over the place.

A twenty minute appointment with my endocrinologist takes three hours out of my day. My former rheumatologist has offices on the

same street as the endo. I’d try and schedule appointments with them both on the same day, so I wouldn’t have to do too much running around. Three hours might not sound like much, but I have to take the train and then the bus to get there and back, so there’s a lot of walking and waiting involved. This wears me out fairly quickly. If I have an afternoon appointment, it’s going to be a lot more draining as I don’t cope well with the Queensland sun between 11am to about 3pm. It triggers dreadful headaches, dizziness and something that may or may not be rosacea.

The psychiatrist is only ten to fifteen minutes away by taxi, but the taxi journey is about $26-30 depending on the traffic, so it’s a twenty minute train journey, a five minute walk to the bus stop, then another twenty minute bus journey, then a ten minute walk to get there. (Up a ridiculous hill, no less. I think it’s a conspiracy–they put the mental hospital at the top of that hill to try and wear us crazies out before we get there.) I only get the taxi back, and cringe at the cost as I do so. I’m having massive doubts about doing CBT, even though I think it might do me good, because I’d need to get a taxi home twice a week and it’s just too expensive.

I haven’t started my hydrotherapy yet, because the service provider is located about an hour away. And you guessed it: I’ll have to take the train into the city so I can catch a damn bus, and go through the same rigmarole to get home. That’ll be around two hours of travel time in total, and about an hour for the hydrotherapy. Honestly, just thinking about it wears me out.

I haven’t been swimming since I made this post, because it takes about half an hour to forty-five minutes to get to the pool, and although I might be able to make it there without any problems, I’d probably need a taxi to get home and I cannot afford to keep doing that.

It would all be a lot easier if I could drive, but I can’t, and I think it would be a bad idea if I decided to learn. My partner has been thinking about lessons, but even then, how could we

afford a car? I’m only working part-time, and we have a mortgage to pay off. Also, she wouldn’t be able to drive me to appointments without taking time off work herself, and that’s not exactly ideal.

It’s getting to the point where I only go out to see a doctor, or go to work. I don’t go and see friends or participate in social activities because getting there takes time and energy that I

simply don’t have. It’s not just physically tiring, it’s mentally tiring as well–I find travelling and co-ordinating train and bus times incredibly stressful, especially if I’m on my own and going somewhere new. I’m the kind of person who gets to an airport fifteen hours before her morning flight is due to depart, just so she doesn’t run the risk of missing the plane.

I don’t know what the solution is, really. I don’t think I’m going to need to see my endocrinologist or rheumatologist quite so regularly in the future, but that doesn’t help me now, does it? I’ve never felt the lack of a car so keenly before, but right now, I really, really wish I could drive.

[Via http://jeneli.wordpress.com]

A Story of Fibromyalgia Pain "On Drugs"

All the Medicine we used, is it really good for you?

One day, several years ago when my wife was taking about 8 to 10 different drugs to control her symptoms. She took her normal doses and still was having problems going to sleep. I went to bed as normal while she was trying to deal with her daily problems of Fibromyalgia.

When you have a loved one with Fibromyalgia, your life also changes. So I routinely wake up every few hours and check on her. This one paticular night, I walked through the house turning off lights and the TV as usual. I turned off the outside front porch light to our 1st floor, in town apartment. Went through the living room and onto the kitchen and back to the bedroom.

Where could she be?

Then I looked at our bed and she was not there and thinking about it, I could not remember seeing her through the house. So I went back to the living room and she was not on the couch. I checked all the rooms and she was nowhere to be found.

I started to get a little worried and thought where could she be. Then I remembered turning off the front porch light. So I went out front and sure enough there she was and she had fallen asleep on our porch swing.

Well this wouldn’t have been a problem, it was a nice night, but we lived in the middle of town and it was 2:00am in the morning. The local bars were shutting down. Well because of side effects of some of the medicine she gained alot of weight and one of her meds would really knock her out cold.

   I could not wake her up! Well some times I was able to get her up and other times I had to leave her where I found her. I was not going to leave her out there at that hour of the night. I could not wake her up and I could not pick her up. So I ended grabbing her by the wrist and dragged her into the house. Then I covered her up and left her lay on the floor right inside the door.

I have hurt my back in the past trying to move her. I love my wife dearly and we have been married for about 27 years now. Because of stories like these we asked ourselves if “There is a way” to solve some of these problems without drugs or part of them. So www.thereisaway.ws was born.

Please click on our site here at: www.thereisaway.ws/Fibromyalgia to see some alternatives we have found to make your life a little easier!

[Via http://dlbauman.wordpress.com]

Fibromyalgia - Living Your Passion and Purpose Helps To Manage the Chronic Pain

When was the last time you did something you really enjoyed?  Life is too short to be consumed by stress and chronic pain.  The bigger question is “What is your passion and purpose in life?”  If you find yourself overwhelmed by chronic pain and stress, isolating yourself, staying in bed and withdrawing from participating in meaningful tasks, I invite you to take this challenge.  The challenge is to decide that you will take an active step each day to move beyond the pain, to live life more abundantly.  An active step can be a goal as simple as getting up out of bed and out of your room for one hour if you are someone who has not been doing this recently.  Often as an occupational therapist, I work with some of my patients to achieve a simple goal such as getting up out of bed and participating in a meaningful activity outside of their room 5 days a week initially for one hour at a time.  A higher level goal may be to participate in an exercise such as yoga or another low impact exercise 3 times a week for 30 minutes at a time.  As always seek the advice of your physician as needed.  However, be honest with yourself and avoid giving yourself excuses as to why you cannot do this, that or the other thing or anything for that matter to actively manage your stress and chronic pain. 

Another goal may to be to get some helpful and motivational books or CDs and commit to reading or listening to them for 15 minutes a day.  I have been so encouraged and challenged by some absolutely great speakers and authors over the last several years.  For me, it started when I attended a “Get Motivated” seminar.  From there I have been inspired by Jim Rohn in his book/CD series, The Art of Exceptional Living and transformed by Dr. Mike Murdock and his ministry the Wisdom Center.  Of course, none of this has made me perfect, much less totally pain free.  However, my life is much more rewarding and abundant.  My husband and I completed the 40 day journey with Rick Warren’s the The Purpose Driven Life at the end of 2009.  We highly recommend this resource.  It has helped to clarify our passion and purpose in life. 

What is your passion and purpose?  My passion is to help those who are hurting physically, emotionally and spiritually.  Among my dreams is the dream to do mission outreach work in the Philippines.  The Philippines is my husband’s country of origin.  Approximately three years ago, I set a goal in my journal that by the end of 2010 my husband and I would be able to go to the Philippines with our three sons.  Our desire is to show them their culture, to meet the children they sponsor from World Vision in the Philippines and to help in the mission field.  As I write this blog, on March 9, 2010 it seems like an impossible dream with my husband having been laid off for more than a year and credit card and business debt.  However, it is because of the clarification of my purpose and passion in life and faith in God that I will not let up.  In fact, it is in knowing my passion and purpose that motivates me to get up out of bed at 5:00 am some mornings, when I wake with a screaming headache and feeling like a “Mack Truck” hit me in my sleep, to take steps to actively manage my pain.  For me, I found it more helpful to get up out of bed, take some aspirin as needed, put on a cold gel pack and start moving.  Sometimes, I conscientiously make the effort to go workout. I go to the gym and do an elliptical machine for 40 minutes while I watch an inspirational program such as Enjoying  Everyday Life with Joyce Meyer or Wisdom Keys with Dr. Mike Murdock.  These can be very effective pain management strategies.  By far the majority of the time, the gentle aerobic exercise and inspirational programs have helped my mind and body to refocus. 

Clarity of my passion and purpose is what motivates me to go to work and keep my focus.  Research shows that it is difficult to stay focused on two things at the same time.  It is so true with pain management.  When a person is engaged in purposeful and meaningful tasks, the mind cannot stay fully focused on the pain.  When our focus is off the pain, our bodies are better able to relax and thereby assist with decreasing our pain level even more.

My question to you is what is your passion and purpose that helps you move beyond the chronic pain of fibromyalgia and/or other painful conditions?  If you do not know, then I invite you to take the active step to discover this.  If your budget is tight the libraries have great resources.  For pain and stress relieving products and articles on stress and chronic pain management please visit our website at http://LivingLifeUnlimitedLLC.com.  At LivingLifeUnlimitedLLC.com we donate 20% of our profits to World Vision to help those in need.  May God heal you and bless you richly in your journey with joy and hope.

[Via http://llullc.wordpress.com]

Why My Yarn Looks Like My Yarn

Notice the ties.

You may have noticed that my yarn in my photos does not look as neat as others yarns available online.  There are several reasons for this.  The first is about me.  The rest is about the yarn.

First, I have fibromyalgia.  I have some days that I feel pretty good.  I have other days that are . . . well, not so good.  They undyed, commercially spun yarn I use comes in skeins , ready to dye.  It doesn’t come on cones and requiring me to wind it into skeins to be dyed.  I could purchase an electric skein winder to wind the yarn from cones.  This would save my a few cents per skein.  But the cost of the electric skein winder would add to the cost of the skeins.  So, in order to save me – and you – a little on the cost overall, and to save me potentially a lot of pain, I’m still purchasing the yarn in pre-wound skeins.  These skeins are tied with the same yarn as the skein in three places.  I usually add a nylon tie or two of my own to make it a little less likely to tangle.  My primary source is relatively close to home rather than across the country (less shipping, a little ‘greener’ and lot more economical).  This company also tries to use domestic fibers.  This is a big plus for me.  I’m picky about the softness/scratchiness of my fibers and will only offer yarns that pass my ‘next to the skin softness’ test.

Next, when my yarns go to your homes, you should receive yarns that are easy to wind into center-pull balls or yarn cakes. The less my yarns have been handled, the more likely you will receive skeins which do not tangle.  I could remove all the ties and manipulate the yarn so that it looks neat and pretty.  But I would rather handle it as little as possible between the time I hang it to dry till it arrives at your home.  I even try to twist the yarn into loose skeins rather than tight skeins so that your yarn will not be stretched or under any tension or stress while stored.  Sometimes I do twist them tighter than I really like, but it’s still not to the point that it will make your knitted or crocheted work twist or skew as you work.

If you have any concerns at all about your yarns tangling when winding into a center-pull ball, I will be happy to do that for you, free of charge.  Just let me know.

I hope you will enjoy working with  TLS Hand Dyed Yarns and Fibers as much as I do.  It is  joy for me to create the supplies you want.

[Via http://teresasdesk.wordpress.com]

1st half of mercury removal procedure - nitris oxide? YES PLEASE!!!

Hi All!

I’m still having a little difficulty chewing on the right side — something to be expected after someone diagnosed with fibromyalgia, chronic fatigue & TMJ had 5 mercury/amalgam fillings removed & replaced with composite!  I am pleased with De. Devening and his staff, despite the discomfort of the dental work. The procedure wasn’t as bad as one of my “normal FMS/TMJ flares” so I’m pretty impressed!  Dr. Devening gave me nitris oxide before putting a topical numbing on my gums, BEFORE injecting me with novacaine in 3 places.  He and his staff did their best to keep me as comfortable as possible, but with FMS/CFS/TMJ one is rarely comfortable to begin with — sooo.  Maybe by tomorrow or Friday my right jaw will be back to the way it was before the procedure.  I definitely like the look of the new fillings, well — the fact that you can’t see them I should say!

In 3 weeks I get to do this all over again on the left side of my mouth & it will be DONE!!! The dental work part that is — I’ll still be detoxing, but at least I won’t be absorbing any NEW mercury from my fillings at that point.  I will also receive my NTI-tss at that time — it’s a little spongy-type thingy that fits on your front teeth at night rather than wearing a night guard.  It takes all of the tension out of the muscles/tendons near the TMJ — I can’t wait to get it!  Dr. Devening’s office can tell you more about it, I couldn’t find a website on the brochure.  Dr. Devening’s number is (540) 463-2134.  His office is located at 112-A Houston St., Lexington VA  24450.  I’ve been wearing the old-timey hard acrylic “bite guard” for TMJ for over 20 years & was still waking up with my jaws hurting from clenching & grinding my teeth all night.  This will end that — YES!!!

I just cannot express in writing how excited I am to have found out about the mercury filling problem and the NTI-tss device.  Recovery is a step by step process & these 2 are huge!  To find out more about mercury poisoning you can go to www.amalgam.org/ or call DAMS at (651) 644-4572.  I believe they also have a listing of Dentists who perform the mercury/amalgam filling removal properly.  If you live within 2 hours of Lexington VA, I highly recommend Dr. Devening and his staff.

Here’s to restoring our health!

Much Love & Many Blessings,

Karla Setchel

www.KarlaSetchel.com

[Via http://karlasetchel.wordpress.com]

Doctors Appointment 3/3/10

I went to the doctor yesterday to let him know that the Gabapentin didn’t work out for me. This was no surprise as I’m sensitive to most medications. I brought with me a typed (two page) list of what’s been going on because I knew I would forget something otherwise. He ordered a sleep study for me, to make sure something isn’t going on there. He also is going to order an MRI to rule out MS. He doesn’t think I have MS, but with the cognitive stuff going on with me, and my balance issues (or lack there of) he wants to check and rule out anything else. He suggested that I likely have chronic fatigue as well as fibromyalgia. This isn’t a big surprise for me as I have battled with fatigue since high school and from what I’ve been reading they often go together. This would explain my extreme fatigue.

For lack of better options I have decided to go vegan again as well as gluten free. I want to try it for a month and see if there is a difference in my energy level. It’s all I can think of doing.

My doctor was optimistic, saying this all wasn’t something FOREVER…because eventually the treatments for fibromyalgia will become more affordable and they will understand the disease better. He was interested to hear that my mom had been diagnosed with it as well. I now worry about Claire who now has a predisposition for it on both sides of the family (my husbands, and mine) But maybe if I do all I can…I can learn to manage it.  In the mean time my doctor suggested I file for disability. hmmm.

[Via http://moderatelyinconclusive.wordpress.com]

My day... Dr's appt and Disassociation...

Hi everyone!

Ahh…. I get to sit down, check my email, and catch up with my blogging!  There is something kind of refreshing about a Monday, I get back to my usual daily rituals, and even thought the weekend is over, it is nice to get back to routine!  I am SO funny that way!  Friday is my least favorite day of the week, and Monday is one of my most favorite… is that weird?!?  I also get excited because Monday is my honey’s Friday… He has Tuesday and Wednesday off!!

A big warm hug and my thanks to everyone that wished me well and sent their prayers this morning… I really appreciate it!  You would think that going to see the Doctor would be as comfortable as a second skin by now… but I dread it.  I don’t know if I am the only one….  don’t get me wrong, I really love my Doctor… She has been in my life for over 20 years, and I feel really comfortable with her, but I really don’t like going… believe it or not ME is not my favorite subject!  Ha! Ha!  I get really tired talking about ME all the time, or rather my health… there are so many things that make up ME besides my health… but lately, pain has pretty much left no time for anything else….. So here is how my appointment went.

I met with my pharmacist first, and he had a resident sit in who was shadowing him.  I told him how bad the last few weeks have been, how bad the nerve pain has been, and what meds I have been taking, and how they have been working…. you know, the usual.  I told him that I am having a hard time managing at ALL these days, and although I am not depressed, I am sure getting frustrated! (I answer questions before he asks them, because I know that my mental health comes up at EVERY appointment!  HA!).  We spoke for a little while about the particular meds, and how I feel there is nothing that is helping my nerve pain…. he let the resident ask a few questions (Gosh, she looked kinda lost… I felt badly for her, I am not a ‘normal’ patient, and it must be hard to walk in on a conversation FOUR years the making!)….  He asked me if I felt comfortable upping one of my meds for the nerve pain… and then my Physician came in the room.  the first thing she said was…

“Jolene, YOU look so beautiful today.  You are ALWAYS so put together, and I don’t know how you DO IT because I very much understand that you are in severe pain all the time..”

um… don’t know what to say to that really… so I stumbled over my tongue and said something like..

“Well, it doesn’t take much effort to do my make-up I guess, and it makes me feel better about myself..”

She explained that she wasn’t saying that in a negative way, and she knows that I am a strong woman, and she said she is proud of me…. but then she said this…

“Jolene I am worried about you… because you come in here appointment after appointment and you are always TOGETHER… you are put together on the outside, you always have a smile on your face, and you are ‘happy’ whenever we talk about ANYTHING, but I KNOW that it is not that way on the inside all the time…. You are dealing with severe and complicated pain not to mention everything that goes with that, and it is HARD for us at times because we can’t break through the exterior… I am worried that you disassociate from your pain at times….”

And then a started to cry…

I don’t know if I do -or-  don’t disassociate… I am confused by that kind of….

She explained that it was okay to let down my guard in her office, and in front of my pharmacist, and to cry on my honey’s shoulder when I needed to, and she is afraid that I don’t do enough of that… USING MY SAFETY NET WHEN I NEED TO FALL… and now I am not quite too sure WHAT to think.

Do I build up a wall or am I on guard at times?  absolutely, I am human, and don’t we ALL do that from time to time?

Do I disassociate from my pain?  I probably do to some extent at times… I think it is a coping mechanism, because if I didn’t I would go crazy!

But I think more so than anything, I stay “put together” on the outside because I am a Mom of a precious 8-year-old boy… and he needs a strong and stable parent… and that is WHO I am to him.  Sure, he knows all about my illnesses and he copes really well with it for the most part.  He can have a conversation about Myofacial Pain and trigger points with an adult!!  He knows if I am struggling, he can identify my really bad days, even if I try to hide them, BUT he is still a CHILD, and I want to protect my child for as long as I can.

When my health, marriage, and subsequently my life all came crumbling down around me, I won’t lie, I was a mess!  I was stuck in bed for months on end, I was in an emotional wreckage…. It was truly the hardest time in my life outside of losing my brother… and I was a mess… There wasn’t much I felt like I could do as a parent.  I was either in too much pain to be present, or too devastated emotionally to connect the way I wanted to….

My son was still very much taken care of…. he still had his “mommy” and we adapted… he spent a lot of time hanging in bed with me coloring, or cuddling, or watching movies… BUT I KNEW it was not the way I wanted to parent… It wasn’t the MOM I wanted to be… and it broke my heart….every day it broke my heart, and it made me question my existance to the point where I wondered if my son would be better off without me.   I hit the bottom of the barrel, and didn’t like what I saw there…As soon as I hit the bottom, I have made EVERY choice, and done EVERYTHING in my life for the stability and security of my child….I have made the hardest of decisions, and risked life and limb to put my child first.

Maybe I have tried to overcompensate for my illness, or a failed marriage, or even day-to-day things that I physically cannot do… but I don’t overcompensate with toys, or money… I overcompensate with ME… I try to give him the very best me I can possibly give him, every moment of every day….

So I stay ‘put together’ on the outside… because that is what he reacts to…  But my Doctor is afraid that I have made into such a habit, that I am not falling when I need to.. I am not embracing the other side of this,  the vulnerable and ‘human’ side, and she feels like I HAVE to do that in order to control my pain better..

Does that make sense?

I know there is a lot of this journey with chronic pain that I protect others from – be it my Dad, my Mom, my Honey, or my friends… and especially my son, because, well… quite frankly… it SUCKS!!  And I have learned to adapt to the sucky part of all of this for the most part… I just don’t want to have the people in my life who love me impacted the way I have been.  I am scared of hurting others the way I have been hurt… I am scared of losing those I love around me… MY pain is not a variable for ME… but it COULD be viewed that way by someone else… and it has been in the past.

I have been truly heart-broken by life… I have been devastated…. but I have found a way through all of that, and learned how to pick myself up and move forward… because what other option is there?  Maybe some of that has made me keep a ’shell’ around me…

I don’t know… but I DO know that I wouldn’t still be bothered by my Doctor’s comment 8 hours after she made it IF there wasn’t a hair of truth in what she said….

Can anyone relate?

Maybe I have to be more ‘real’ about what I go through with the people I love as well as with my doctors… but the thought of that scares me…..

[Via http://gracefulagony.wordpress.com]