♥I rang in the New Year at Mad Maggie’s, rocking out to the Smoking Popes. It was a big deal because I had been dealing with a lot of pain and avoiding shows and bars because of it. Lots of fun.
♥Also started off the year with my face on the cover of Elgin’s 2010 budget book, which made me a local celebrity of sorts. T’was maybe a bad omen because of all the cuts that were made.
February:
♥I can’t really remember February. Records show this is when I began my “Elgin Shopping Experiment” in an attempt to only spend money locally.
March:
♥My boyfriend (at the time) and I traveled to Washington DC and loved it. I was lobbying at the Bike Summit and had an opportunity to meet with ten representatives or their staffers. Great experience, but also solidified that I’m not interested in being involved in national-level politics.
♥I canceled my birthday celebration because I wasn’t feeling well. Later found out the rumor mill decided it was because my man & I were fighting. Felt very sad that no one would just take my words about my pain/illness at face value.
April:
♥I became an elected official in a local office–library trustee. The experience was eye-opening. It showed me how many people don’t follow elections or vote at all, and out of those who do, how many don’t understand what’s going on. Many people who voted for me thought this was going to be a full-time paid position.
♥I moved out of my 2-bedroom apartment in the North East Neighborhood into a 3-bedroom historic house in Gifford Park. The house was actually cheaper than the apartment by $200/month because I moved in with a roommate.
May:
♥Threw a gigantic housewarming party at said house. It was seriously packed. My brother and his friend played jazz. People brought more gifts than I ever expected. Worlds collided. My parents and my (ex)boyfriend’s parents met each other for the first time. City Council-types chatted up community college drop-outs. I loved it.
June:
♥I had the unique experience of interviewing, hiring, and managing Elgin’s first Bike Ambassadors. It was a fun time and doesn’t look too shabby on the resume either. The BAs were two friends of mine so we had fun. They spent the summer riding bikes around Elgin, encouraging others to do the same and spreading safety information.
♥Another unique experience/resume builder: I co-taught a Master’s-level college course, in the grad program I graduated from. Being asked was an honor, and the extra money didn’t hurt either. Topic was bike planning. I have opted out of teaching it next year, as I see myself going a different direction.
♥I went to the ER for the first time in my life. With the weather warming up I had begun feeling better physically, and one night I stayed out until 3:30 am drinking beer with old friends. The next day I woke up in great pain, and three days later a throbbing was starting in my chest and shooting down my arm. Turned out to be nothing serious, but it hurt and was scary.
Monday, December 21, 2009
Hello! My name is Kerstin, and I am currently recovering from Glandular Fever, also known as the Epstein-Barr Virus (EBV) and Mono.
For those that have experienced or witnessed it, you understand what a difficult time it can be. In my attempt to understand, accept and recover from Glandular Fever, I have searched hundreds of sites and read much on the subject.
Do you know what I found? The majority of information out there is about describing the symptoms and prescribing ‘rest’ as the only treatment. Not satisfactory, if you ask me!
Having gone through this experience, the most helpful thing was speaking with others who have had Glandular Fever, Chronic Fatigue and/or Fibromyalgia. Only they can truly understand the physical, mental and emotional impact these illnesses have and help you through it.
But what if you don’t know others who have had it? Or what if you are just too damn tired to get out there and ask? Then this is for you!
This site’s mission is to bring the experiences of fellow Glandular Fever sufferers together, in a way that anyone can access, anywhere, anytime – especially those that need it most: those too bedridden and tired to be able to go out and speak to others.
So please, help the many people current suffering from Glandular Fever and CFS by sharing your story!
Anyone can share!
Glandular Fever, Chronic Fatigue or Fibromyalgia – we can all help each other!
Or perhaps you are a family member or friend of a sufferer – fantastic! We’d love to hear your experience on the other side of these illnesses.
i was hoping to get into something lighter but so far today has been very grim. i’m finding myself completely paralyzed in my mental state, not being able to do anything. i have been at the mercy of my emotions for a few days now, but it got a lot worse last night and spilled onto this morning. i’m crying uncontrollably, my anxiety is so high it’s hard for me to do anything without freaking out, and the fact that i am in such a state is probably the scariest thing i’ve had to go through in a long time. not to say that my life isn’t scary, because it most definitely is. every day i fear that the pain in my body will not go away, that i will always hurt physically and be malfunctioning. but we always say: i will get through this because i’ve been through worse. i’ve been though major depression, anxiety, i’ve battled demons, past and present, and in many ways i seem to have emerged triumphant.
but today i feel like i am right back to where i started. of course that isn’t entirely true, because i used to suffer from terrible internal dialogue and used to not understand many of the things i do today, but the strength with which my emotions are ruling my thoughts is reminiscent of the past. and that is the scariest feeling of all. i don’t want to lose myself again in this big dark cloud i know too well. i’ve worked so hard to rise above, to see the sunlight, i don’t believe i have the strength to do it all over again.
although now i find myself wondering about something entirely new. i can’t help but feel like maybe this lurking darkness never quite went away, but i just managed, throughout the months and years of battle, to tuck it away into the cells of my entire body. that instead of getting over my depression, i was storing all my hurt and pain into my organs and my spinal chord, hoping they would find a home there and i wouldn’t have to deal with them again. the physical repercussions of anxiety and depression may have left a lasting mark on my body (as i have thought for many years now), but i’m now thinking that it’s the anxiety and depression themselves that are still constantly eating away at it. and it isn’t just a question of being too stressed out and then having physical symptoms, no. i have had been long periods of feeling more relaxed and more at ease and the pain did not subside. one thing i know for sure is that my body is not capable of dealing with all that anymore (it will give up on me one day). but is my mind capable of dealing with it any better? i don’t know, and again, this scares me to death.
so now what am i to do? i find myself at a loss, although that isn’t anything new. i’ve been to so many specialists to try and heal my body. i know i haven’t ’seen them all’, so i can keep looking, but i won’t pretend that i am not somewhat discouraged. doctors all say i am ‘perfectly fine’, if not just a little too stressed out. but all alternative medicine specialists agree that i am not fine at all: constant exhaustion, debilitating back problems, pain all over my body, never-ending headache, and many more issues i don’t want to get into. they all offer some help, from natural supplements to breathing exercises, but i haven’t found anything that truly has made a big difference. a few days ago i saw an osteopath, while suffering from a migraine. he did a very gentle manipulation, where he held my head at the base of my skull. no strong pulling, just gentle pressure. i barely felt anything at all, aside from a certain nervousness around my chest area. he said it would work the nervous system and maybe release some tension in my body. it’s hard to say if that is really it, but if his manipulation did play on the nervous system, then he may have forced my body to release some of that anxiety and depression, which could explain why i have been feeling like i do the last few days? and wouldn’t that say, that in order to heal my body, i have no choice but to work more intensively on healing my mind?
If you check back to the Alternative Pain Therapies List blog posting, you will see I now have links to biofeedback and nutrional therapy. Again, these are just starting points. I know that fibromyalgia folks have built strong networks and support groups. Perhaps someone from this network could add to the alternative therapies links and suggestions.
You well see all the tears….still not sleeping but it’s a good thing I guess cause if I was a sleep I wouldn’t have found the water and the hole in my dinning room ceiling. This is getting to be a habit and I know it’s not me because there is patch and repair marks on the ceiling that shows it has been a problem in the past. And not the first time this has happened to me….same ceiling just different spot….. before from the AC and the bath tub pipes and it’s the toilet part of the pipe has rusted through and water has been flowing into the crawl space until it got soaked wet and heavy enough to suddenly break through and drain on to my dinning room…lol…. gotta keep laughing cause I really feel like crying…..then my youngest son gets up and since it’s now after midnight…. aah like 4 to 5 am and it’s his 19th birthday and he is all upset and starts yelling……some how it seems to be all my fault… he’s really a good kid but the yelling and foul language really doesn’t help and I already feel bad enough all on my own and with it wet outside and now inside….. I hear the dust bunnies under my bed calling my name…. telling me to come on there is still room under the bed for me and maybe even a chocolate chip cookie still under there too…..lol…. boy sure sounds tempting…… at least the dust bunnies aren’t yelling and they don’t blame me for all the problems of the world……he blames me for being sick….. that’s what it really comes down too. So he behaves just like his dad did and blames me for having FMS ….he can’t wait to get a way from me and “having to put up with all the things I can no longer do”. I try to laugh things off and tell him not to worry with the stuff I’ll call the management company when they open. And he gets mad at me for “acting like it’s no big deal” when it is a real problem and not funny at all. So I laugh so that the tears don’t show as much at least until he goes back to bed. It hurt me deeply when he says that kind of stuff. I’m really tired and worn out. I told myself when I started this blog that it was where I would tell the truth and what it is like living with this illness…. so here’s the truth….. TODAY REALLY, REALLY SUCKS!!! Well just to show how lost I am in the fibro fog…lol…. today isn’t my son’s 19th birthday…… no his is the 18th of this month….. today is MY mothers birthday! Thank goodness he was just to mad for me to even think about wishing him a happy birthday….. yeah that would have went over real good…..something like “you being sick has even made you forget when I was born …good going mom” and he’d no doubt tell me again “you are totally useless”…….. now I am going under the bed and hug a dust bunny….. I’ll be under the bed and when I peek out and the dust has settled maybe our paths may cross again….. until then just leave a note written in all the dust if ya stop by before I peek out……. Lila
PLEASE NOTE IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FOG….” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITHOUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS http://www.lilabyrdakabirdladybyday.wordpress.com
Life with kids isn’t always a picnic in the park. But, I still love them unconditionally.
For the past week I’ve been crocheting Christmas bonnet wall ornaments. I give them out for Christmas presents to family and friends because money is very tight right now. It take me six hours to crochet each bonnet, not including the starching, drying, and decorating time. It takes less than a minute to starch them but, the drying time exceeds 8 hours . Decorating them takes about 15 minutes. So, with that being said, it takes over fourteen hours for the finished project.
I have produced 10 bonnets of all different colors. I was so proud of myself for getting them done in plenty of time for Christmas. Dealing with the pain that Fibromyalgia entails, it was a feat in itself. However, I endured the pain and fatigue just to make sure that there were enough gifts for everyone on my list.
This afternoon, after finishing my last bonnet and placing it on the starching board to dry, I retired to my bed for a nice long nap. While images of smiling faces receiving my gifts danced through my head, I was quite unaware of what was going on in the living room. To my despair, my two sons were wrestling and knocked over a cup of coffee that I had abandoned earlier. When I opened my bedroom door, I almost cried. Coffee was splashed all over my Christmas bonnets, table, chairs, floor, and the boys.
Once I had the mess cleaned up, I took inventory of what was salvageable. I had only saved four ornaments. Well… it’s back to the starching board. Thank God I still have time. Needless to say, the boys spent the rest of the night in their rooms. But, from the heart of a mother, I still went upstairs and tucked them in, doled out hugs and kiss, and wished them a good night. After all, a mothers love is unconditional.
How to Survive the Holidays With Fibromyalgia
By Cynthia A Jones
I have had Fibromyalgia and Chronic pain for 25 years. In 2007 I finally discovered the cause of my Fibromyalgia flare-ups. Unfortunately during the years between 2001-2007 I was very sick everyday with tremendous pain.
What’s the old saying? “It’s darkest right before the dawn.”
Back then every single day when I opened my eyes my body would immediately go into a panic. I knew the infamous muscle fatigue was on the way as soon as my cells finished waking up. The best way I know how to describe the pain is that it’s my body’s fight or flight survival panic. My body seemed to be screaming internally for survival.
There were also many days when the body aches were so intense I could barely move. On those days depression was in control and I wanted to go off by myself and die, similar to an old dog.
Does this sound familiar to you?
Today as I recall those experiences the worst memories were during the holiday season. I love comfort food and always splurge during the holidays. I eat everything in sight, especially on Thanksgiving Day. Turkey and stuffing are my all-time favorites.
Unfortunately, the next morning while my family would be downstairs having breakfast, laughing and loving life, I would crawl to the bathroom from my bed immersed in pain.
Looking back, it makes perfect sense. I had no idea at the time that food was the cause of my pain and when did I eat the most? During the holidays.
Read every label on your meats carefully. If you see the words “basted, extra tender or juicy” written on your holiday turkey label it may contain a 15% toxic solution. The solution may include broth, sodium phosphates, citric acid and flavorings. These ingredients may contain MSG or excitotoxins that cause musculoskeletal pain. Always ask your butcher to order your meat without injected solutions.
When making your stuffing or casseroles use Swanson’s broth, it’s MSG free. Kitchen Basics’ stock is also free from ingredients that cause common food allergies. They do not autolyze, hydrolyze, add or produce MSG, which causes migraines and muscle pain.
I hope you and your family have a wonderful and painfree holiday season. Please click here to order a free report of the 65 cleverly concealed names which cause Fibromyalgia and Chronic Pain.
Hello my name is Cynthia Jones and I’ve had chronic pain for 25 years. I was diagnosed with Fibromyalgia 10 years ago. I refused to take prescription drugs for the rest of my life! After exhaustive investigation and research, I finally discovered 100% of the excitotoxins in our food supply. I’ve found the cause of my pain – and with the elimination of these excitotoxins – my recovery. It has become my life’s purpose to help heal those in chronic pain.
This is an incredible video on Neural Plasticity and the ability your brain has to Rewire itself. As I’ve mentioned before, many chronic conditions such as fibromyalgia and chronic pain are disorders in the way the brain interprets pain signals. Fibromyalgia and other chronic conditions are neurological, brain based problems that chiropractic neurologists have been treating using Neural Plasticity with good results. Frederick Robert Carrick, DC, PhD, DACAN, DABCN, DACNB, DAAPM, FRCPN, FACCN, FAAFN, FEAC (Neurology), FACFN, FABVR, FABES, FABCDD, FICC, developed the brain based techniques used by chiropractic neurologists which harness the power of neural plasticity to treat chronic pain, fibromyalgia, and many other neurological problems. I was skeptical of these treatments until I saw them applied in clinical practice and WORK! I now have a much better understanding of brain plasticity, and better understand the science and physiology behind why brain based therapies work. This is truly cutting edge science and therapy for people that thought there were no other options.
This video is from PBS, and shows absolutely amazing work done by a group of neuroscientists that allow a blind man to see using the sensation of his tongue! The therapy they are using works because of Neural Plasticity, the exact same thing I use in clinical practice to help patients with fibromyalgia, and chronic pain. You have to see this video, the science and technology have the potential to change lives in ways we never thought possible. These scientists are pioneers.
So… it’s been a few days since my last post. I went to see my Dr. today and drug my handsome hubby back there with me. I have been FMS “drug free” for a few weeks now. I feel as bad as a person can, but my mind is clear. I wonder if the pain is what helps me focus. I try to ignore the pain, but I can’t, it’s always there reminding me that I am not in control. There is just too much feeling. Everything I do, every movement I make, I focus so much thought to do. Nothing is easy any more.
I am not scared. I am not worried about myself. I am very lucky that my support system is there. My friend Cindy is an inspiration and always lifts me up. My husband is the epitome of what a perfect mate is. He doesn’t understand the pain, (no one can unless you are living it) but he is always there to help me, to hug me, to nurture me. My Dr. listens to me and considers my feelings and we work together. After saying all of that, I will say that I do feel like I burden them. Oh… not the Dr., he gets paid to listen to my whine. =)
Anyway… I ave GOT to lose weight. I mentioned that I would do the Atkins and Dr. Ghosh said “No”. It’s the ketosis issue. I take “Metformin” for my A1C issues and it has a side effect of causing ketosis on its own. Atkins and “Metformin” don’t mix well and could cause kidney failure. My blood pressure is high 132/92 and he’s given me 2 mos. to drop weight or go on heart meds. Sheesh! I have got to exercise and it will compound my pain. I know this. He told me… “It’s going to hurt.” Darn right! Listen to me… I’m a big whiny baby! I don’t want to do this, AT ALL!!! I mean… think of it this way… would you want to do anything to yourself to cause more discomfort or pain? But I will do it, when all I want to do is wallow in my self pity.
“Father, please look out for all of my brothers and sisters. Especially the ones who feel like I do. Give them shelter for this horrible weakness and pain. Let them have good support systems like I have. In Jesus’ name, Amen.”
I have a google wave invite and I am all signed up, this might be agreat way to talk to other sufferers of FM or conditions related.. Its came at a good time as there is supposed to be heavy winds up to 70mph in my area tonight and I my room is in a loft conversion so hear and feel “my roof certainly does” every bit of it and its scary sometime and makes me stress out with it..
So no doubt I will be pretty bad tomorrow and I have so much I want to do tomorrow and a wee job on, but looks as though its going to be a miss from me..
I so dislike having to start over again. I can find so many reasons not to start over. That’s part of the reason I don’t mind being single and have been looking forward to my last nestling flying the coup full-time at the start of the year. At last! No one to have to think about. Just ME. If I don’t want to cook and want to eat cold sandwiches for days or cereal and milk….. no one to complain. If I’m up all night and need to sleep all day…. so what? And I would have no need to try and explain just why I do or not feel up to doing any thing. NO GUILT! But now out of the blue the ex-love of my life has shown up and has been wanting to talk and spend some time together. {see post “Another Night…… Then What….Another Day…?” and “I’M STILL WAITING……” for more details.} I talked on the phone for a while and sort of put off seeing each other…. for some very deep seeded reasons….I have changed so very much over the last ten or so years due to illness…. I’ve even had to stop coloring my hair and I started turning gray at sixteen…lol… now totally gray, white and silver mix that I like. Just not so sure if anyone else does…. say like him. Not to mention the fact that I now spend about 80% of my time in bed. I can only do a few things at a time and that’s on my good days…lol… I’m a spooner for sure! I’m a few spoons short of a set too! But I digress, we did see each other and he was ever so kind and caring. Did feel he was uncertain how to handle all my oxygen equipment, but it didn’t seem to scare him off. He had a nice dinner set up for us and we did talk but not too much about what happened and why. I’m sure that will be soon coming. My appearance didn’t seem to scary him off….. but I did put on make up for the first time in many months…lol…So what’s the problem? We had made plans twice to go back to his home of dinner again. He has made special efforts for this meal and twice I have had to cancel. At first, no problem….. seemed to be OK about it and understanding. But now I can feel that it is wearing a little thin. I really do not think he understands just how much worse I am than before. The time I went out with him that was the first time in several months that I even made it out the door. It took me two days to get ready…lol… really….shower and shampoo in one day, left me weak and in pain. I don’t know if I even what to try this out…. even if he wants to. Lords knows I can not go through the emotional pain I went through when he broke things off. That devastated me, only in the last few months could I truly say I had not cried over that loss….. and it has been over ten years. So do I want to try and start over and begin the education process of just how my life’s day-to-day works? Will he really have the patience to learn and understand that I’m NOT playing games of payback…. but my daily activities can change abruptly…. what I could do an hour ago I may not be able to do again for weeks or three hours might be able to try again……. between FMS, Diabetes, High Blood Pressure, COPD, Sleep Apnea, Hypothyroidism, Psoriasis, Psoriatic Arthritis, my “dain bramage”{from lack of adequate oxygen levels during several severe respiratory infections} and so on my life can be very complicated when I have to take in the feelings of someone else…… someone I could come to try and care and trust again….that’s a big job on it’s own…..and the stress of this isn’t helping either…lol…. so here I go again…. or not? I’ll turn to prayer and find calm and strength….. and wish the comfort of prayer and strength for all others that live with these illnesses and find comfort until our paths cross again…. Lila
PLEASE NOTE IF YOU ARE READING THIS POST AND YOU ARE NOT AT THE WEB SITE “LILA LOST IN THE FIBRO FOG…” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITH OUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS http://www.lilabyrdakabirdladybyday.wordpress.com
…and what makes it all worse, is that NOBODY gets the real pain brought on by fibromyalgia and how much it both worsens other pains, and other pains add more stress….making the original fibromyalgia pain worse. confused?? let me simplify it some…HAVING FIBROMYALGIA HURTS LIKE YOU WANT TO DIE!!! AND MEDICINE, YES PAIN MEDICINE IS SOMETIMES REQUIRED IN KEEPING SOME SMALL QUALITY OF LIFE SO WE/I DON’T FUCKING HURT SO MUCH, ALL THE FUCKING TIME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
it’s a sick vicious cycle. one i did not create!!!
all the while people, family…those who should love and support you now more than ever…call you a faker and a drug addict. if they only fucking knew how much it hurt to be me…and how sad it makes me when i get compared to the other trash that makes up the rest of my family.
i’m fucking done. ya know what…I AM FUCKING DONE!!!!!!!! believe what you want, think what you want. be an ignorant ass if it makes you feel better than me. it doesn’t fucking matter anymore. remembering just how little i am in this world, will help keep me distant for accepting “love” anymore. who the fuck wants it anyway??? i thought i did, but i don’t anymore!!!
what’s the point of love, if it’s conditional and based on only a rare fake bullshit moment??
Smoke here is choking me up I finally figured out what the smoke is when I cannot smell cigarettes. It’s incense. Somebody has been burning a heck of a lot of it today. My neck and throat have been all swollen up. My eyes itch. When the smoke blows through I start choking and sneezing.
I either need a sealed bubble or need to go travelling. Hmmmm…..tough choice
Do you know someone who suffers from chronic pain? It may be back pain, headaches, pelvic pain, fibromyalgia . . . many types of pain sufferers also experience sleep disruption. Unfortunately, people can get into a cycle in which pain disrupts their sleep, and insufficient sleep makes pain worse. This may seem logical, but let’s look more specifically at pain and sleep interactions.
A few chronic pain conditions are known for sleep disruption. One of them is fibromyalgia. 70% of fibromyalgia patients have sleep complaints, and one study found that 27 of 28 had sleep-disordered breathing. When the breathing was treated with CPAP, patients had a 23-47% improvement in symptoms. 80% of cluster headache patients are found to have obstructive sleep apnea. For those patients who experience insomnia due to pain, it’s been shown that Cognitive-Behavioral Treatment (CBT-I) will improve their sleep, and may slightly decrease pain.
How to Minimize the Effect of Chronic Pain on Sleep
When people are in pain and their sleep is disrupted, they may feel like they need to catch some ZZZs whenever they can, even during the day.
As best you can, maintain the difference between daytime activity and nighttime rest. Stay awake and engaged during the day, and be sure to get bright light, preferably outside. During the night, keep lights out, and minimize your activity. This will help consolidate your sleep in the night.
If you need to rest or lay down because of pain do so somewhere other than your bed or bedroom. Make yourself a comfortable spot in the living room, maybe an easy chair or day bed. This maintains a strong association of your bed as someplace to sleep.
Get tested for sleep disorders if necessary, especially as discussed above.
If you are taking prescription pain medications, be aware that some of them can cause sleep disruption. You may want to ask your prescribing doctor to review your medications, and switch them if appropriate.
Once I start offering E-cise menus keyed to specific diseases, I thought, where do I stop? The answer must be–I stop with these two menus. Why include breast cancer but no other disease? At the Egoscue Method Clinic, I see far more women who are facing breast cancer than those facing other serious illnesses. Almost every client is there for musculoskeletal system-related issues, like a bad back or sore knees. But those with breast cancer form the largest subgroup because the conventional treatment regimen can have such drastic effects on upper-body mobility, comfort, and function. The Egoscue Method has a good track record in easing pain and restoring mobility and function. That’s why they come to us…
I had another amalgam filling removed this morning and as we waited for my ceramic filling to process, my dentist and I chatted about his adventures in Inuvik where he practiced dentistry for many years. He began saying, “You know how we refer to stories as fish stories if they are exaggerated? There are no “fish stories” up in Inuvik. They are all true.” He described how he had a patient who used his dentures as bait since he could catch so many fish with them. And then my dentist said, “I actually have my own fish story. My wife and I went to Yellowknife with some friends and I decided to cast an old fishing rod that was in our boat into the water. This rod didn’t even have a reel. Anyways, not really expecting to catch any fish, I cast it into the water – without any bait. Suddenly, the rod began to move and I had this huge jack fish. Unfortunately, he got away but a few minutes later the rod moved again, and I was ready. I returned home with several huge jack fish.”
One dictionary defines a “fish story” as an incredible or far-fetched story. Another dictionary says that a fish story is a boastful tale about an improbable event. When I read books about auto immune disorders, or when I check out people’s blogs regarding this type of illness, there is always the understanding that those afflicted with this disorder will endure it for a lifetime. The emphasis is how to cope with this disease. There are no boastful stories that describe cures for auto-immune disorders unless it is a company that is selling a miracle supplement. And yet, I have never accepted this pronouncement of doom and I have consequently had many unorthodox treatments in my quest to be healed. I embrace the improbable, the far-fetched, and the incredible.
Most people love to hear a good fish story even when they doubt its accuracy since it is encouraging to hear how events can occur that don’t follow the prescribed rules, how sometimes an exciting event can disrupt the norm or the expected. It is gratifying to believe that the improbable can occur. If I can believe my dentist, some of those boastful fish stories can be wonderfully accurate and true. Why shouldn’t I believe that it is possible for me to someday share my own “Northern Fish Story” in which I will describe all of the incidents that lead to an improbable and to some people, impossible conclusion: my healing!
One of my best friends came over yesterday to help me clean the house. (I had done some vetting for her when one of her dogs got attacked by the other. I told her I hope they keep getting into fights. Ha!) Boxes and laundry everywhere. It was quite a job.
Now let me back up a moment…I was on some medication this summer for my fibromyalgia that left me with some unwanted side-effects: short-term memory loss, trouble concentrating, and anti-social behavior. Of course, it took some time for me to realize that I was experiencing these effects, and not just getting old and cranky.
So, this summer was difficult, from the point of trying to stay on top of things and getting things done. Oh, yeah…one of the side-effects was sleeping all of the time! Anyway, once I figured out I was having these issues (and the FM wasn’t any better) I contacted my doctor to work on a new med regime. This one seems to be going better personality/mental wise, although the pain at times is worse.
Anyway, back to the point about being crazy. As we were going through boxes, I found a box of stuff that Dear Hubby must have taken off of my desk in an effort to be helpful. There was some of the stuff that I couldn’t find this summer that I spent hours looking for, thinking that in some crazy hallucination I must have done something with it. It wasn’t me! Thank, goodness.
However, now I had a box full of stuff that had to be dealt with. So I spent most of today getting on top of that box and I’m glad to say it is nearly done. I feel almost like a sane person again.
Now, to convince Dear Hubby not to do me any favors for a while, or at least leave the desk alone. Getting THAT done may drive me crazy.
Kenai is enjoying his morning play times, pretending to be Linus with his blankie. He’s been dragging it along while batting around a tennis ball all week, silly guy. And we’ve had a glut of cardboard boxes for him to tear up, which has made his boy heart happy.
With his continuing die in the rears, he isn’t getting bones, and he isn’t getting training treats. I fudged once and felt so bad for the boy when it was potty time. Our play times are foodless, boneless affairs for awhile. Hence, the cardboard boxes and play-as-reward training spells.
He stares up at the top of the tv where his bestest bones sit and wait for him. Oh the pitiful…so he’s got tennis ball times, and Linus blankies, and horsing around in the dirty laundry to keep him entertained. I may have to abandon the laundry games, after finding toothie holes.
Now that the weather is changing to fall, the furnace has replaced the AC, and ’tis the time of the dry skin dander fest. Some people have beer fests, dog owners have dander fests. So I’ve pulled out the Head and Shoulders shampoo/conditioner. It works very well for dander, as well as pretty much any itchy skin problem in dogs–folliculitis, fungal infections, yeast overgrowths etc.
As the boys hate all out lather and rinse bucket baths, I’ve developed a “baby bath” routine for them–a shampoo wetted rag rubbed on every boy part. H&S doesn’t really have to be rinsed off like other shampoos and soaps. In fact, leaving a bit of the sudsy treats the skin (it has zinc in it)
The rag gets rinsed and relathered, rather than the fussy babies, when it’s baby bath time. BB actually thinks it’s great, like some funny smelling massage. Kenai? He puts up with it. When they get really messy, mud from stem to stern, then they have to endure the bucket woman.
I get the donkey ears and droopy faces for a “real” bath, and despite how funny it is, I try to take pity on them. The rag gets them clean most of the time, to their relative satisfaction. Nevermind Kenai’s “I smell like a girl” reaction…
Thursday I hit the Sam’s club, discovering I could buy an 80 lb case of ground beef for just $1.54/lb rather than the family packs at the grocery for $1.99/lb When I get some grocery money, I’ll go back for veggies and non-perishables.
We don’t have tons of pantry space, but we do have 2 chest freezers in the garage, so there’s plenty of room for things that can be frozen. The case of meat should last a couple weeks, so I don’t have to go to the store every few days.
The store runs were wearing me slick. Getting around’s getting harder for me, durn it. To combat the worsening issues, I’ve started a cortisol controlling supplement. It lessens my body’s overreactions to stress and strain. Sometimes it can feel like your body hijacks you, doing what it wants and taking you along for the ride!
That’s just part of the fibromyalgia–the pituitary/hypothalmus/adrenal glands go haywire and these endocrine system problems affect every system in the body, from metabolism to anxiety. The fibro flares set off the autoimmune diseases, then the opportunistic illnesses like chronic Lyme start up when the immune system goes wonky.
It’s a chain reaction, and getting better means you have to climb up each link in the chain again, hand over hand. Claw over claw is more accurate. It can be done, but promise ya it takes longer to feel better than it does to go down. This downturn has been 18 months long and counting.
BB’s had a rough week, but his playful personality is irrepressible. Beebs is bumping and wiggling and grinning all the same, die in the rears notwithstanding. I almost got them these huge stuffed animals at Sam’s, and may yet go back. They’re big as the boys–can you imagine the flinging?!
I was looking forward to Friday’s training time. It’s sort of like a surprise package–I never know what we’re going to work on, or even sure which of the Brothers Grin will have their “time in the sun” until its time to go. They both love “playin with Lisa” time, no clue that they’re actually training.
We’ve had some 10″ of rain so the training session had to be cancelled. It’s rained so hard that even if it had rained cats and dogs, the boys wouldn’t be asking to go out! They zoom out, pee under the nearest tree, and zip back in for their dry off games. It’s the only time they don’t dawdle outside!
Boy I can really tell the seasons are changed–I’m thinking about apple crisp, and added cinnamon and cloves to today’s pinapple upside down cake. Hot chocolate is replacing milkshakes in my don’t-I-wish list, and hot tea is taking over from iced tea.
The fluffy sweaters and layering clothes are out, and the thermostat’s being turned down (gradually, mind you). I love cooler weather, and so do the boys. 45-65 degrees is the ideal temperature span, brisk enough to invigorate, and warm enough not to make puppy slobber-cicles freezing on fences!
I was disappointed for them that we didn’t have our weeking training, but there’s always next week. And with any luck the AT&T truck will go away–everytime I see them at the end of the road, I know I’m in for a frustrating time trying to get online. I have to connect and disconnect until getting 24 kb/second or better, just to get explorer to open. Urg!
Well, yesterday I managed one of the typical stupid injuries that just…happen around here. They’re typical mostly because of the connective tissue disorder I live with, but also because of the sheer number of old injuries and the touch of clutziness that is rather typical of people with life-long connective tissue disorders.
I dislocated my shoulder.
Now, before you all get worried, I’m fine. I missed my afternoon class, and called off the girl who comes in in the evening because I wasn’t in any shape to supervise.
The real annoyance comes in with how I dislocated my shoulder. I wasn’t doing anything particularly stupid; didn’t try to lift something heavy, catch myself falling, get yanked on by the dog, or anything of that ilk. No, I just tried to take a sweater off.
Out of habit, I tend to take pullover sweaters off the same way – I cross my arms and grab the bottom edge of the sweater, then pull up and over my head. I got about halfway when my left shoulder – the fragile, tempermental, and generally infuriating shoulder – decided it wasn’t in the mood to do that.
I had to have my boyfriend ease me out of the sweater around the dislocated shoulder, which got jostled in the right way and snapped back into place in the process.
Yes, ladies and gentlemen, just getting in and out of basic clothing is dangerous when you have EDS.
It’s a lot of things.
First off, let’s start with the basic shapes of clothing. You see, it doesn’t take much to pull the joint of an EDSer out of place. A jacket that pulls just a little at the shoulder. A sleeve that bunches too much at the elbow. Pants too long, stepped on, can put out any joint in the leg. Shoes that aren’t JUST RIGHT – and even ones that are – can put out any of the myriad joints in the foot. As can socks that are too big or too small – too big and it can bunch and wrinkle to the point of dislodging joints, too small can squeeze joints out of place.
Going beyond that, putting them on. It is oh so easy to put a shoulder out when donning or doffing a jacket, especially the heavy winter variety, and elbows can be prey to this as well. As I mentioned happened to me yesterday, clothing that comes over the head like shirts and sweaters can dislicate the shoulders, or alternatively wrists, hand-joints, or elbows. Putting on pants is just downright dangerous – either you are sitting down and put them on, in which case you need to stand before you have them all the way up, or you put them on standing up and wobble and try to stay upright. Either way, you’ve got a risk of falling, you put a lot of pressure on the ankles, and if you’re wearing tight pants you risk putting a hip out. Socks can be hard on the fingers and toes.
And then there’s the fasteners. Ever thought about how hard it would be to do up your fly when gripping something too hard can dislocate your fingers? Not to mention buttoning shirts, zipping jackets, doing up a jacket, lacing shoes… Any one of those is a risk to my fingers, and some are a risk to wrist and shoulders as well.
Sadly, the kind of clothing that doesn’t produce these risks is not exactly the sort of thing a well-heeled future attorney wears. While my pyjama pants are the height of comfort, Tinkerbelle does not exactly set the right tone. And frankly, when it comes to anything on my upper body, well EVERYTHING is a risk!
And before any of you says it, no, going naked isn’t an option, either. My boyfriend might appreciate the view, but I appreciate not being locked up, and not having all the goods on display for the whole world.
I’ve been asked a few times lately about my “coffee”. So, here it is…
1quart purified or distilled water 3-4 T organic coffee (I buy whole beans and fine grind 2-3 cups at a time)
Bring to boil for 5 minutes, then simmer for 15 minutes. Cool to – I don’t know, just let it cool off some. I then ozonate it for 15 minutes – 30 if it’s still too hot. I don’t know of anyone else who does that, made it up myself. Last thing I want to do is burn myself, so I always make sure it’s under 98 degrees. If I haven’t pooped in the last 8 hours, I always do a chlorophyll enema first. If you’ve ever watched me cook, you know I don’t measure anything. I just fill the enema bag with ozonated water, then pour some liquid chlorophyll in it. Let gravity work and pour it in. Hold it 10-15 minutes, then spit it out. I’ve never had a problem holding it, but probably best to set up camp on the bathroom floor really close to the toilet. I spilled chlorophyll on a few things – it doesnt wash out. Good news though, if you shart your pants with chlorophyll still in you, the green is so bright, you can get away with saying you must have sat on something. No one will ever know. Plus – are they gonna believe you if you told them you filled your butt with chlorophyll anyway? Okay, back to the coffee. Fill the enema bag with the ozonated body temperature or cooler coffee. Hold it for 15 minutes or more. I’ve fallen asleep on the bathroom floor, only to wake up an hour later with no need to let anything out of the back door, but a really full bladder. Amazing how our bodies work! Probably the best colon/liver/gall bladder cleanse available. And nobody has to know about it. Well, not a secret in my world. There’s lots of information out there as to “why”. I’ll have more in my book.
And if I say this long enough and loud enough I may just start to believe it too! Things have been rough….. thought for a while I might just get washed away with all the rain….. but still here and so are the sleepless nights, IBS and the pain with a touch of a migraine ….. just to change the pace a little…. don’t want to get in a rut…. I have a “Lost and Found” that I feel I need to do but just too tired to even try it right now…. but I did jot down my notes on it to help my poor old “dain bramage” and the fog that sets in so fast at times. Oh, it is the first of the month….. I HATE THE FIRST OF THE MONTH!…. bills and budgets…. can be a real challenge at times due to the fibro fog and being dyslexic doesn’t help either…lol…oh dear this is all ready longer than I planned and the sun is coming up and I MUST get some sleep before I even try and deal with the budget….. but I will make it…. I WILL make it….. darn when will I start to feel like I will make it…lol…. I will return…. Lila
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I’ve tried to avoid talking about how my body feels. I cried much of Sunday and woke up Monday with an owie head. Then Monday I cooked and cleaned in preparation for guests…plus had several other visitors during the day. I was tired from morning to night. Last night I had massive night sweats. Tuesday morning the upstairs dogs barked until I went nuts.
Normally, I would not drive to town when it’s raining, I don’t feel well and I don’t have much money or a pressing need. I drove today just to get away from here. As usual, people rushed to steady me, to help me do things and to open doors. In one sense, that is very sweet. In another it just makes me feel even older and more decrepit.
The whole trip from beginning to end was less than 2 hours. By the time I got in my van to come home from town, my arms and legs were tremoring like crazy. For the last month or so I have been having more frequent and sometimes debilitating fasiculations and even bigger muscle twitches. The muscles firing over and over wear me out! It’s as if I were doing real physical labor when I twitch so much.
I hate it when my toes curl, the thighs cramp and my knees won’t flatten from the twitches, swolleness and cramps. Or my “favorite”…when my hands spasm and I can’t flatten my hand out. Super owies!
My legs have been swelling. Tonight my right leg/ankle is so swollen that my very loose sweat pants are way too tight there. Incredible! The leg is getting redder and hotter by the hour I used to get blood clots and cellulitis, so I need to pay particular attention.
Earlier I had violent chills. Now I am burning up. Chronic diseases are so much fun….NOT!
I’m not going to lie, I’m nervous. Life with lupus is not for sissy’s. Life with lupus while over the road trucking is going to be a whole new experience. I’ve been dreaming of this new chapter in my life. Dave and I have been planning. He paid the dues for both of us by struggling as a team driver at a “trucking school” truck company. These companies flood the roads with new drivers working off their school fee’s. It’s a rough way to break into trucking.
Lupus brings with it certain “special” needs to contend with. Things like bladders and bowels that do not work right. I’m scared, really! This is embarrassing to write but I am committed to honesty here, we are going to put a small porta-potty on the rig in case of emergency. I am one blessed woman to have found such an understanding husband. OK this is gross and graphic but will also pack a barf bucket. With lupus you are more susceptible to food poison. A stomach flu can lead to projectile vomiting as your head spins around like on the Exorcist while the other end is also busy.
Covering up is mandatory. I’ve been buying sun protective clothing items on ebay. I hate wearing mens clothes but if I can get a new UV protective shirt for $20 instead of $80 I have to buy it. Head coverings are vital, I have ugly hats, can’t afford the pricey UV hats. I do wear long scarves pulling them up over my head when in the sun or vehicles. I look like a Muslim woman, most people gawk at first but scarves work better for me than hats anyway. Scarves allow air to flow around the head.
Lupies have to be very careful not to eat or use anything that may cause an allergic reaction. Once an allergic reaction begins, it often will go from bad to worse even after you have removed the allergen. Recently I ran out of my natural shampoo and used Garnier Nutrise. After 2 applications my scalp broke out in a lupus rash. Right now it is blistered and spread to the entire back of my scalp. So travelling to new places and experiencing new things will have a dark side to avoid.
There’s no such thing as “packing light” with lupus. Besides the special clothes there is usually special food. All lupies should be on large quantities of fresh organic produce. Lupies need extra rest. We can’t just work through it or push ourselves. Oh well yes we can, but we will pay a dear price for it later with extra miserable pain or a potentially life threatening exacerbation.
The risks of infection are going to be greater since I will come into contact with hundreds of peoples germs at truck stops. Dave takes extra precautions for me. He uses care in public restrooms and germicide.
The secret to my happiness and joy are; pain management, my faith, and the fact that I do not live in fear. We all will die, it is a fact! Some die sooner than others but we can not live in fear lupus or not.
So live! Dream! There are no failures only the chance to find another way to live your passions.
I’ve got a bunch of body pain today. What??? The most likely candidate is egg since I’ve just reintroduced them and ate three yesterday. That and the weather is about to change…that usually affects the FM. But still…geeze. I’ve been good sticking to the diet but there must be something that’s getting me because I’m having body pain. It’s still not as bad as before I started The Experiment but not as good as the first few weeks.
Yesterday my sister in law (hi Viki!) pointed out that if I’m sensitive to corn then I have to watch it because there’s corn in a gazillon things. A quick spin through google confirms this. Not only corn syrup but corn derivitives are everywhere and called by every name but “corn”.
Great.
I also found out yesterday that my biological father and my paternal uncle both have wheat sensitivity and the uncle has been gluten free for a couple of years. I guess when he eats any gluten he breaks out in a terrible rash. Sounds very celiac diseasey to me. My paternal aunt (the messenger) tries not to eat gluten herself.
Very interesting, don’t you think?
I’m trying to eat clean today. Had a hemp protein smoothie for breakfast with my one coffee and some herb tea. Kevin is making his nummy no-tomato chili for the rest of the day. For dinner last night it was quinoa and diced sweet potatoes fried up in a skillet with a little tahini and oil.
It was very mediocre.
So no eggs today, no processed foods, just chili and some fruit. And water. I should really be drinking more water. Wish me luck!
DAY 28: Pay attention to my little accomplishments
“A lot of stroke survivors complain that they are no longer recovering. I often wonder if the real problem is that no one is paying attention to the little accomplishments that are being made. If the boundary between what you can do and what you cannot do is not clearly defined then you don’t know what to try next. Recovery can be derailed by hopelessness..” A Stroke Of Insight by Jill Bolte Taylor
No question it is a challenge being able to notice progress when one is chronically ill. The problem is that healing is not linear so that I can’t always say, “I started at this point where I could not do (list the activities) and now I can do the following (activities). Certainly, during the first three years, when I was mainly bedridden, those linear benchmarks were appropriate. However, since then, progress has been difficult to describe. I could tell you how I went shopping for a couple of hours which seems like a significant indicator of progress, but then I might tell you the next day, I had regressed and couldn’t leave the house again for another ten days. It is this constant instability, this rocking back and forth from progress to regression that makes it difficult to determine whether I am making headway.
Over the years I have often used Christmas and summer as my benchmarks comparing how I am doing. And there have been some significant improvements since at times my activity levels have increased. Then last spring I could feel my body making another significant regression and I didn’t know how to stop it. I tried to ignore the symptoms, but by summer, I could feel so much of the strength that I had begun developing begin to disappear, and by fall, I was definitely pretending to be more well than what I was. By November, the pretence was over as I could no longer leave the house. I felt like Charlie in Flowers for Algernon gradually slipping back into his original state and there wasn’t a thing I could do to stop it. During this time, I put much of my hope in my new doctor who specializes in environmental medicine. However, with his various treatments during the next ten months, I actually got worse rather than better!
Yet, I believe that these treatments are beginning to work. And as I pay attention to my small accomplishments, I realize I am making progress. For instance, last Thursday evening my daughter was hosting a Princess House party and obviously I wanted to attend. Even though my sister-in-law drove me home early and she needed to help me out of the car and into the house as I felt like Raggedy Anne, I still felt encouraged. I actually got to go out that evening and the next day I rebounded back faster than I usually do. A further indicator of progress is that yesterday I walked into several stores where I had had severe reactions last winter and as of today, there has been no consequence! This morning my daughter drove me to the dentist where I sat for two hours to have more amalgam fillings removed. In past sessions, I could hardly wait to get home and go to bed. Today, though tired, my daughter drove me to Coast Mountain Sports so that I could purchase a fall jacket! To note even more progress, despite the constant “setbacks”, I have still been able to do some form of exercise four times a week during these past 28 days. That alone is worth a lot of celebration! And what makes me particularly excited is that Greg and I are considering a holiday. I know even on Sunday Greg looked at me and wondered if we were being wise about leaving,since I was doing so poorly. However, I believe that this holiday will be good emotional therapy. My doctor believes my symptoms would worsen if I go on an airplane, therefore, we have chosen a road trip. After spending so many hours at home, I am excited about driving in the car appreciating the scenery, listening to good music, and participating in good conversation. I can tilt my seat back when I need to nap and have my longer nap when we arrive at a hotel. Even having this attitude tells me I am feeling better since 6 weeks ago I couldn’t have imagined being able to do this. I still haven’t figured out how to get the energy to pack my suitcase, but it just means that whatever I take will be just fine!
Yes, sometimes you just need to know what to look for when you assess progress.
Calcium is still number key in the prevention of not only bone loss. Studies showed that people that ate diets high in animal protein were more at risk for fractures than those that had more than 800 mg of calcium a day. Also it is true that protein and calcium taken together could also benefit the bones only if the calcium did not go below 800 mg. Without 800mg or more of calcium daily the potential for hip fractures were greater and this was studied over an approximately 30 yr time frame. Over that course of time the study participants that followed a high protein diet and took calcium over 800mg a day were over 80% less likely to have hip fractures risk.
I have been following Lisa Ray’s blog http://lisaraniray.wordpress.com/ and am humbled by her humour and candor and intelligence in dealing with her recent diagnosis of Multiple Myeloma. I applaud her for putting a face, even if it a “moonface” to this disease and helping to raise awareness for it and all cancers. No chronic condition is ever in any way pleasant to have, but cancer just has to take the cake. Not that it’s a contest, or anything! I don’t want to win, please don’t misconstrue my meaning here. After all, I had RSD– more painful than cancer pain anyday, according to the McGill Pain Index (and by far!).
But hey, I put up with that for 18 years. Then I got my leg cut off.
CHOP.
OK> not the whole thing, just the right one, above the ankle.
Muchos better now. I know, I know. A bit extreme, but what is a girl to do? No matter what, the leg just wasn’t getting any better. It wasn’t responding to treatments. The pain was increasing. I was taking over 17 meds and I forget how many supplements a day. A DAY. Do you know how hard it is to go to the bathroom when you are on that kind of regimen? Jeesh! Let’s just say we won’t go there.
Over the years the chronic pain of my fibromyalgia has been exacerbated by the pain from my leg. By a whole lot, but I had no idea it was having such an influence. My average daily pain levels have gone from an average of 7-9 on a 1-10 pain scale to a 3-4. My migraines have decreased as well. I don’t ever expect to be free of pain, but I can “live” with this! My left leg, the bad knee, still spikes up higher than that, but it is isolated pain, instead of overall. One thing at a time. One thing at a time. Keep the Yellow Diaries coming….thanks for the head check Lisa Ray.
I came down with Chronic Fatigue Syndrome in January of 1990. It was what they call sudden onset and it hit after the worst flu of my life.
It took almost a year of physical chaos to be diagnosed — Fibromyalgia in the context of Chronic Fatigue Syndrome, with viral onset. I was 36 years old. For the next nine years I felt doomed. Pain, fatigue and severe cognitive disruption limited me to the smallest life possible.
Then something turned, and in the years since, I have had longer and longer periods of semi-wellness interspersed with what we PWCFS (persons with Chronic Fatigue Syndrome) call “flares” or flare-ups. Some symptoms are permanent, some come and go, but I am not the same person I was before that flu.
There is no cure, but doctors are following many different theories to provide treatment. “Research has established the existence of CFS. We must look to future research to teach us how to detect, diagnose and manage the disease until we find a cure.” – CFIDS Association of America
Since I seem to be continuing the stream of dreams intent on restoration of the past, I will include this one from last night.
k
III
They come in and get me. We go down a long hall to a big room with a round table. The doctor at the table reminds me of a doctor I once knew, a scientist. He reminds me of him because of his intensity, and his excitement at the results of my tests.
He shows me the results. A 65 score in that range meant that it is guaranteed I have the organism, and that it is causing most of my symptoms. He’ll give me meds and I’ll be well! I have to slow down and ask him to write down the name of the organism and the drug he’ll use to treat it.
I go to a nearby office and tell my friends what happened and that I am so excited. All these symptoms will be gone. The dizziness, fuzziness, pain and fatigue.
DAY 20: If it doesn’t make me feel physically worse, do it even when it will be difficult.
“The path of least resistance is the path of the loser.” H. G. Wells
When I began this focused health program, I began riding my stationary bike for only 10 minutes. I have been gradually increasing the minutes so that presently I do 15 minutes. I have also begun spending 10 minutes lifting 3 pound weights Monday, Wednesday and Friday. Last week I began doing some very light yoga exercises following a DVD of Leslie Stansone’s whose goal is to help those who are really not very fit. I would like to continue that practice doing those exercises Tuesday and Thursday mornings. I don’t have any formal program for the weekends except that I hope to incorporate more walking outside. I know I need to walk more often outside but I have been trying to introduce everything gradually – which is really difficult for me.
This morning I was still feeling a lot of the effects from a rather difficult weekend. When I finally pushed myself out of the bed, I felt very dizzy and weak and I rolled back onto the mattress and slipped under the covers. However, my self-talk was distracting me: “I can’t go downstairs to ride my bike. Oh dear, what if I begin to slack off? I don’t even want to get out of bed let alone exercise. Oh you whiner. Do you remember reading about Michael J. Fox who must go through excruciating pain every morning in order to rise out of bed, but he does it? You need more self-discipline.”
While I was beating myself up with my self-talk, Greg asked me if I was going to go downstairs to exercise. I told him I didn’t think so. Thankfully, my husband knows me often better than I know myself. He said, “ Just sit on the bike and see if you can pedal for 10 minutes. Knowing you, you can’t go downstairs since you don’t think you can ride the bike longer than ten minutes and you want to lift weights on top of it.” After he left for work, I lay in bed and I asked myself a very important question: Will my symptoms get any worse if I ride that bike for ten minutes?
As long as I don’t over do it, I knew that the exercise would probably help the circulation in my legs and might even help the pain.
I proceeded to put on my shorts and top, and went downstairs to ride my bike. I rode slowly and as usual at a low tension and at times I used my hands to push my legs down to pedal. But when I stopped, my self-talk was no longer negative. I was now saying, “Way to go, Gayle! I am going to make it. I am going to become healthy since I am prepared to do what it takes!”
It would have been so easy to choose the path of least resistance and to surrender to the pain, dizziness and weakness and convince myself that it justified my resting and not exercising. However, that choice may have been the easiest, but I have resolved to do the hard things and do nothing to hinder my resolve to optimize my chance to be healthy.
I lay here in bed with my laptop and look for the time and see it’s after five am….. still no sleep…. still pain….. my skin hurts and all the same old same old…. topped off with psoriatic arthritis hurting in my hands and knees …. just for good measure…. I guess this monster called FMS wants to show it can be fair and let another illness have equal time…. wouldn’t want to be rude or greedy….as I think about this… I have to wonder….I claim as mine the bed, laptop, skin, hands, knees, but claim no ownership …..of the monsters ….. but……. if I didn’t get this like you can a cold or flu….. then the monsters must come from with in me and therefore are a part of me? Yet I feel like I have no control over it and what it does to me…..and again I find myself saying “it”…. OK my monsters within….ohhh… soon the sun will come up and another night will have passed….so what? Celebrate that I lived through another night? Now what? Try and struggle through another day?…. Just to see the setting of the sun and look into the dark of another night? I am just so very tired….I smile and make jokes try and keep things light…. who wants to be around or talk to someone who is in such a world of hurt and all the other crap that is a part of “MY” monsters….no one… heck I don’t even want to be around me…. I wish I could say hey man this is some funky stuff and sorry but I can’t handle all this right now….. I’ll come back later when things get better…..and then get up and leave…… only problem with this…. I’d only tag along right after myself cause I can’t quit me and leave me like most everyone else has done….. hmmm….crap….. so that’s it…. now the tears…. cause I just realized when this is…..should have known…. when the dark mood started in… this is when that jerk that I loved with all my heart and soul….. the only person I ever allowed to get close… the jerk that said he didn’t care what this…”MY” monsters did to me….. he would never leave me… wanted to spend the rest of his life with me…. take care of me ….. the only one I ever believed really meant it…. yeah right…. didn’t know that three years is what all those promises meant…… rest of life = three years…….never = three years ….. should have read the fine print….. I never trusted anyone on the face of this planet like I did him…. I let down all the walls and for the first times in my life I felt loved and safe…. and never saw it coming….. and when I hear people say things will be less painful as time goes by…. well THAT’S BULL CRAP ….. you just try not to think about it but when that time comes around each year…it hurts just as bad as it did when it first happened …. you just try and move on past it as fast as you can and feel safe in knowing that at least now I don’t need to worry about that any more because no one will ever be allowed to get past that newly built up wall….. gotta have some protection…. that kind of broken heart can never be fixed and that soul is lost….. So, now remembering this…. does this mean I feel like this because of this or is this just making how I feel worse than I already was feeling? Oh heck what does any of it matter? It is what it is and why …… who cares it won’t change the out come nor the course…… so suck it girl and move on….. life sure has and will continue to do so with or without me and my monsters…… so play time with my “inner child ” and “feelings” is over…. now slap that smile back on my face and step back into the ring for another day …. the sun is coming up….. Lila
Please note if you are reading this post and you are not on the web site “Lila Lost in the Fibro Fog…” then what you are reading has been stolen and is being used without my authority and I hope you will come to my web site blog at wordpress http://www.lilabyrdakabirdladybyday.wordpress.com
*Keep away from people who try to belittle your ambitions.
Small people always do that
but the really great make you feel that you, too, can become great.*
~Mark Twain~
My lucky streak of sleeping all night has ended sadly. I woke up at 4:30am this morning and couldn’t go back to sleep. I like to call 3-4 am my fibro witching hour. I always wake up around that time & can’t go back to sleep during insomnia phases. Yesterday I was leaning forward to let hubby put a icy/hot patch on my mid-back and pulled a muscle in my lower back. UGH! Been tough to move. Otherwise I’m doing well today.
It’s Labor Day today which means no work or school for the family. I’m working away on my baby (Crafters with Love). It’s growing every day and it just amazes me the response I am seeing. Everything I attempt to do for it to grow is taking off. Every day I’m pleasantly surprised with new ideas, offers and willingness of other people to want to learn more about it and help. I have another crafter on board, my best friend Kathy, who makes amazing jewelry. I’m also in the process of getting confirmation back from 3 more who have offered.
Let me also say that I am forever grateful to my friend John for all his time, advice and efforts in helping me. Roxie, who has lent her talents to the cause as well as wonderful ideas to promote it. Amy, for her gorgeous painting talents & Dawn along with everyone on Twitter & Facebook for passing the word along.
All of this is proof positive that the “feel good” chemicals in the brain help get rid of pain.. Since Crafters with Love has taken such a tremendous leap recently, my pain has been a lot less. I’m more tired, of course, but that’s ok. It’s worth it because at the end of every day my heart and soul beams with pride at the accomplishments I & my team have made toward our goal.
My team= my most loving and caring friends who are working right beside me on their own time toward bettering Crafters with Love. If in the end, all my efforts fail with the charity (which will not happen) I still have learned who my true friends are and know that they believe in me. AMAZING people that I’ve never even shaken hands with. It’s so great to still be able to believe in the human spirit and people after having spent a lifetime of being able to count on no one.
Funny thing, someone asked me if I was working today and when I replied that I have too many health problems to work they naturally & sweetly apologized, immediately my response was “don’t be sorry, my health problems were just a redirection.” I’m not working as a nurse like I hoped to be, but I’m doing something just as good if not better. Better, because it’s all on my own and nothing is expected of me that I can’t give.
I didn’t like to blog about Fibro before (and probably why I haven’t formed that new habit I wrote about before) because I always felt like I was complaining. Now I’m finding I WANT to blog. For the first time since becoming sick, I have exciting stuff to say that over rides the bad stuff happening to my body. I hated when people asked how I was feeling because I had nothing positive to say. On my worst days, when it was really tearing me down emotionally I kept it inside because I didn’t want to depress anyone with those bad thoughts & feelings. I felt like I had nothing to look forward to the next day except maybe a glimmer of hope that I would feel better. Every day I wake up now since my charity has taken off, even if my body lets me down and I have to stay in bed the whole day… I can say I accomplished something great and still have something else to look forward to.
What a blessing of love I’ve been given.. giving and receiving each and every day.
The recent emergence of study into ‘pacing’ or activity regulation in pain management is a welcome addition to our knowledge of this coping strategy. Although pacing has been described and included in many self-help books as well as clinical texts as an effective strategy for people with chronic pain to use, the research base for its use is pretty skinny (see Gill and Brown, 2009). McCracken and Samuels (2007) found that increased use of pacing was associated with higher disability and less acceptance, while Nielson and Jensen (2004) found that it was associated with lower disability in people with fibromyalgia.
The study I’m looking at today, by Karsdorp and Vlaeyen, looked in whether pacing specifically was different from ‘other behavioural strategies assessed with the Chronic Pain Coping Inventory (CPCI), such as guarding, resting, asking for assistance, relaxation, task persistence, exercise/stretch, seeking social support, and coping self-statements.’ The second part of this study looks more closely at whether ‘pacing was associated with physical disability when controlling for pain catastrophizing, pain severity and the other behavioural strategies as measured with CPCI.’
The methodology was pretty simple: a random sample of around 400 patients from the Dutch Fibromyalgia Association responded to being sent a set of questionnaires, a response rate of 68%. 388 women; mean age = 47.58 years, SD = 10.18, range 18–75 years. The mean duration of pain was 160 months (SD = 116.79). Thirty-four percent of the patients had a job and 39% of the patients received income from a disability income insurance.
The questionnaires used were the Chronic Pain Coping Inventory (Jensen, Turner, Romano & Strom, 1995). CPCI comprises 70 items measuring 9 behavioural strategies: Guarding (9 items), Resting (7 items), Asking for Assistance (4 items) , Relaxation (7 items), Task Persistence (6 items), Exercise/Stretch (12 items), Seeking Social Support (8 items), Coping Self-statements (11 items), and Pacing (6 items).
Pain intensity was measured using VAS, catastrophising was measured using the Pain Catastrophising Questionnaire (Sullivan, Bishop & Pivik, 1995), functioning was measured using a fibromyalgia specific Fibromyalgia Impact Questionnaire (FIQ-PH) (Burckhardt, Clark & Bennett, 1991), and the Pain Disability Index (Pollard, 1984) were used. Note: these were translated into Dutch for this study.
Thank goodness for statistics! Multiple regression analysis was undertaken – two hierarchical regression analyses were conducted with physical functioning or disability as the dependent variables. The first step included gender, age, and education, pain intensity, and pain catastrophizing. At the second and third step, the 8 CPCI subscales and the pacing subscale were entered, respectively.
What did they find?
At step one in the regression analysis, the demographic variables, pain intensity, and pain catastrophizing explained a significant amount of variance in physical functioning.
Older patients, patients with more severe pain, and patients who tended to catastrophize about pain reported greater physical impairment and more disability.
At step two, the 8 CPCI subscales without the pacing scale reduced the effect of age and pain catastrophizing to zero and significantly explained an additional amount of variance in physical functioning.
At step 3, the pacing subscale did not explain a significant additional amount of variance in physical functioning, leaving, in the final model, patients who avoided physical activities and asked for assistance to manage their pain reported greater physical impairment and more disability, even when controlling for demographic variables, pain intensity, pain catastrophizing and the other behavioural strategies.
So, what does this mean?
Remember, the first question was whether pacing forms a separate scale within the Chronic Pain Coping Inventory, and it seems to – at least in this Dutch version of the CPCI. Pacing is different from guarding, asking for help, avoiding and so on.
The second question was whether pacing was associated with physical disability when controlling for pain catastrophizing, pain severity and the other behavioural strategies as measured with CPCI. The reason for testing this hypothesis was to ascertain whether ‘activity pacing is an adaptive behavioural strategy that could be taught in pain management programs to improve adjustment in FM.’
Zero-order correlations revealed that patients using more pacing strategies reported greater physical impairment and more disability as opposed to less physical disability, so perhaps not such a great strategy to use – but wait: regression analysis demonstrated that pacing did not significantly contribute to physical functioning and disability over and above demographic variables, pain severity, pain catastrophizing and other behavioural strategies reported in chronic pain.
This means that the present study suggests that helping patients to increase pacing strategies in pain management programs may not be a key element in diminishing disability in FM. The authors suggest that the context in which pacing is used may determine whether it’s adaptive or not. Some patients may use pacing as an avoidance strategy, while others may use it, along with graded activity, to increase their ability over time.
The two strongest predictors of disability in this study were guarding and asking for assistance, which are likely to be dysfunctional strategies in FM. This shouldn’t be surprising, as these findings fit with the fear-avoidance model of disability.
Now, some caveats when interpreting this study. Don’t ever confuse correlation with causation - this is a correlational study, so there could very well be some intermediate factor that moderates the effect of activity pacing and disability. The authors quite rightly identify this. Longitudinal and experimental designs are needed to explore the relationship between activity pacing and disability in much more detail. Observational studies are needed to counter the self-report nature of the study instruments in this study. (Of course, we know how difficult observational studies are to carry out!).
Nevertheless, the authors suggest (and I agree based on my experience) pain management programs targeting activity pacing or behavioural strategies in general may not be effective in FM. Instead, therapeutic interventions based on fear-avoidance models specifically targeting paradoxical safety behaviours are likely to be useful in FM. I’m not sure we do exposure therapy as well as we might – and I’m certainly not sure we identify safety behaviours well at all. Perhaps something to explore in the future?
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Karsdorp, P., & Vlaeyen, J. (2009). Active avoidance but not activity pacing is associated with disability in fibromyalgia Pain DOI: 10.1016/j.pain.2009.07.019
J.R. Gill and C.A.A. Brown, Structured review of the evidence for pacing as a chronic pain intervention, Eur J Pain 13 (2009), pp. 214–216.
L.M. McCracken and V.M. Samuel, The role of avoidance, pacing, and other activity patterns in chronic pain, Pain 130 (2007), pp. 119–125.
W.R. Nielson and M.P. Jensen, Relationship between changes in coping and treatment outcome in patients with Fibromyalgia Syndrome, Pain 109 (2004), pp. 233–241.
DAY 10: I will create more positive associations to help manage pain.
I often get quite feverish with exceptional heat generating under my skin that my husband claims can heat up a room. But presently, I sit in my reading chair wearing a long sleeved t-shirt and a hoodie, a pair of jeans, and I have a blanket draped over my legs and lap. It is raining and my joints and muscles have this deep cold ache.
Apparently, this reaction to weather changes has been substantiated in several studies. “ In 2002, a study was conducted in Cordoba, Argentina, where there are four distinct seasons every year. The study involved Fibromyalgia sufferers and a healthy control group and aimed to find out whether pain symptoms could be linked to specific weather changes. Participants were asked to rate their pain symptoms on a scale from one to ten, every day for 12 months. After 12 months, these symptoms were correlated to weather patterns for the entire year. Researchers found that pain symptoms of the participants with Fibromyalgia correlated directly to weather changes. Specifically, pain increased as temperatures fell and atmospheric pressure increased. The healthy control group did not show any correlation between pain and weather patterns. Another study performed in Norway found a similar relationship between Fibromyalgia symptoms and the weather. Fibromyalgia symptoms appeared to get worse during the months of December and January, but began to improve during April and May. This suggests a direct relationship between colder temperatures and lower barometric pressures and a rise in Fibromyalgia symptoms”. http://www.fibromyalgia-symptoms.org/fibromyalgia_weather.html
Somehow knowing that this increased pain isn’t just “in my head” doesn’t really comfort me and in fact I am dreading the cold that will be settling into a daily fact. I was tempted not to post a blog today since I just wanted to settle into a chair drinking tea and reading a novel to distract me from the pain. However, I am determined to stay focused on optimizing my healing environment. I just read an excerpt from Jack Canfield’s book The Success Principles and I don’t really know how to respond to his statement: You either create or allow everything that happens to you. By create, I mean that you directly cause something to happen by your actions or inactions.” Again, I know I didn’t “create” this illness; however, I am determined to wrestle with this statement to extract any gems of truth from it that may help me cope with these weather changes. I checked on the Internet for some suggestions and there were only the obvious recommendations of dressing in layers and keeping the extremities warm. I suppose I could add soaking in a hot bath that has lots of Epsom Salts. And I could continually put linament on my fingers to help the joints move more easily. However, I actually feel that outside of moving to a drier climate, I really don’t have many options to choose from. And yet, Jack Canfield’s statement tells me I DO have options!! Perhaps due to my dread of weather changes and due to my expectations that these weather changes will definitely impact my health, negative thinking may not be helping me cope with what happens to my body. Somehow I must create more positive expectations when the weather begins to pummel me. I have to create a new association replacing the dread with acceptance. I accept this pain since I know it is temporary and when it occurs I will associate it with some good, positive things. That is, I will create a warm, cozy, positive environment in which I give myself permission to indulge in some small pleasures. For example, I could put on the fireplace, light some candles, watch a fun movie – and indulge in a few chocolates, or other favorite snacks. Wow, I’m already having a different attitude about this rain!!
“In reading the lives of great men, I found that the first victory they won was over themselves.” Henry Truman
As part of my program to optimum health, I had determined last week that I would ride my stationary bike every day for ten minutes. I had determined I had only one excuse and that was if my symptoms got so completely out of control it would be difficult for me to walk downstairs. Otherwise, I would at least need to sit on the bike to determine if I could ride the bike or whether I could at least do a couple of minutes. I am trying to eliminate my “all or nothing” mentality. Also, my past history was to decide to do laundry or wash dishes or do some other mundane household chore first just in case I didn’t have the energy to do both. In other words, I wasn’t putting my health as a first priority.
Anyways, I am celebrating a small victory tonight. This morning I didn’t rise out of bed as early as I should have since my body wasn’t cooperating. When I got up, I remembered that a plumber was arriving around 8:30 this morning. My typical reaction would have been to quickly shower, blow dry my hair, get dressed and be “ready” well before I knew anyone would be arriving at my place. However, this morning, I realized I couldn’t do this since my first priority was to go downstairs and ride my bike. This set me back by at least 20 minutes and the fellows arrived before I was fully dressed and with my hair wet. Fortunately, my husband was still home and he talked to them a few minutes while I quickly put on a shirt, grabbed a blow dryer and brush and quickly moved into the other bathroom. I thought I could make this transition smoothly and quietly but my husband called out, “Is it okay for them to come up?!! Apparently, nothing could frazzle me this morning!!
This may seem like a pretty small victory, but I have never been so focused to choose what is best for me over my false sense of what was more important. I find that this small action has empowered me to believe that I may actually “get it” this time: Every other priority must take a lesser importance than my priority of getting better. It makes me believe that my 365 day challenge to optimize my health may just work!! It also has made me aware that celebrating these small victories can actually propel me more easily toward my goal.
In the past 3 years I had seen numerous doctors, each giving me ‘meds’ for either my pain, headache/migraines, swelling and depression. I was also sent to another who gave me injections for my pain, which usually presented itself in my joints. (legs, hips, arm, elbow, foot, neck and back).
I had always been quite athletic and outdoorsy kind of person. Hunting, fishing, camping, gardening, 4 wheeling and that sort of thing.
But 3 years ago I was diagnosed with Lupus. It was rather difficult and the depression set in. I considered myself; strong, intelligent, athletic, and all around ‘normal’, so when depression set in, I was really surprised that my whole attitude changed.
Monday, August 31, 2009 will forever be en-grained in my mind.
I had my appointment with a rheumatoid specialist for the results on my blood work up.
I hurt. I am tired of hurting. Oh I know it could be worse and others hurt too and feel for them I really do. Not only do I hurt I am exhausted beyond normal exhaustion. I try not to complain, do my thing and not show how bad it really is but today its unusually bad and I hate it.
The dishes aren’t done, it seems no one in the house knows how to do them (there are two other adult females), things aren’t picked up. This annoys me to no end, even when I have said something nothing changes. They mess it up and I am supposed to clean it. One told me I had no idea what pain was! Okay. Now I am pissed. I know what pain is I live with it everyday. Some days it is worse than others and some days even worse. BUT I look fine, though I am not.
Very rarely do I get angry, usually frustrated, but today I am angry. Angry that I hurt, angry that people don’t recognize that. Angry that I have no help when they could help. Just plain angry. I miss the old me……..
Topic was bike planning. I have opted out of teaching it next year, as I see myself going a different direction.
Life with kids isn’t always a picnic in the park. But, I still love them unconditionally.