Hello and happy belated Thanksgiving! I have not been online all that much recently, as I've been alternatively spending time with family and attempting to recover and heal myself for the next visit. I'm still learning how to pace myself properly during the holidays, so it has been a lot of early nights and later mornings for me. Which is OK--I feel like the holiday season, especially this year with Thanksgiving and Hanukkah overlapping, and and Christmas so close--is a marathon. Your family will want you there for the finish, so remember to take care of yourself!
Validation. It's a word that I've used more and more since being unofficially, then officially, diagnosed with Ehlers-Danlos Sydrome, Fibromyalgia, and POTS (and a plethora of secondary illnesses that go hand-in-hand with both). It seems that even with that piece of paper from a doctor's office with a diagnosis in black and white, getting the type of validation needed from family, friends, other doctors, etc., becomes a Herculean task.
And why should I (and you) care about being validated? Those of us with chronic illnesses need the understanding of others (the so-called "Normals") around us to be properly physically and emotionally cared for and treated. EDSers especially--and others with rarer types of disorders--need the validation that their disorder is real, that their pain is real, and that others believe their disabilities. Otherwise, we are left with "it's all in your head" syndrome.
Thus, validation is important because, without it, no one can truly address our physical and emotional needs. We absolutely need the understanding of physicians in order to get to the root of physical symptoms and to flesh out treatment plans. However, we also need the validation of friends, family, and community to help and support us emotionally. The validation of those close to us helps to get past the frustration of when other Normals find it comforting(?) and/or helpful(?) to say things like, "no pain, no gain!" or "if you'd just get out of the house more you'd feel much better" or "have you tried [fill in the blank] vitamin?". Even when we are coping with illness well, and have come to terms with EDS and the emotions involved, one comment or look can send us reeling back to when we were first sick and dealing all the initial skepticism.
Finding validation from all sources is a difficult and never-ending road. It is, of course, crucial that EDSers find the validation they need from the important sources--mainly the physicians who are in charge of your treatment plan. Having validation from close family and good friends is important; however, you must remind yourself that not everyone is willing to listen and believe. You may never find validation from certain individuals. And that is OK. Remember that the way they respond to you is indicative of something wrong with them--not something wrong with you. And remember that the entire EDS community believes and supports you!
I recently came across this site. It contains some good information that is difficult to find elsewhere (at least in one place) and links. Medical Zebras.
This is the time of year when we all gather around and say (or at least think about) for whom and what we give thanks. This year, for my combined family (my immediate family and my husband's), the Thanksgiving holiday will be a difficult one. Since May, we have lost my husband's great-aunt, my Gram, and his Grandma. We've experienced a number of setbacks with my illness, as well new diagnoses for my father and sister. In all, it has been a really rough year for me--probably the most trying one of my life so far. However, I am incredibly grateful and thankful for my wonderful husband (who I will call "K" on here), who has stood by me through everything. K and I have known each other for year; so long in fact, he actually remembers me before EDS started to have a negative effect on my life. I cannot imagine how difficult it is for him to have to constantly adjust to the new facets of EDS. But he does so, and we have gotten through some pretty terrible times in order to have some fantastic ones together. So this year, I am thankful for K, my match in life. We both realize that, even though our life together has not turned out anywhere close to what we expected, the fact that were together, and working on our love together, is what matters. EDS or not, this is what counts.
It is the phrase that all of us with chronic illnesses want to shout, scream, and cry. "Why me?" "Why did this happen to me?" More than once I have been guilty of yelling it at the stars, as if they would rearrange to give me a good answer. Unfortunately, I still don't have one. But I have decided that having hours, or sometimes a day or two, of being in the "why me" mode is OK. Being diagnosed with a chronic illness, especially one that is progressive, is a huge change for anyone. I went from being a marathon runner to a slow walker (and some days a non-walker), and from being "top of the class" intelligent to a person with massive brain fog, memory issues, and other cognitive problems. So, yes, the "why me" days are inevitable. They will happen, and when then do, relish in them briefly.
I say briefly, because the problem with the "why me" mindset is that it tends to linger and we begin to wallow in it. The longer we feel sorry for ourselves, the harder it is to break that thought cycle. I now put a time limit on my wallowing. If I feel like absolute crap one day, well, then I have that day to curse and moan at the world. However, I need to start looking on the bright side of things by that evening or the next morning by the very latest. (There are some exceptions to this rule--like the time I had a chest tube for three days. I cursed the world the entire time and I would do the same again.) I feel like this outlook keeps me sane and optimistic, regardless of what I'm up against.
Symptom and joint mobility progression in the joint hypermobility syndrome (Ehlers-Danlos syndrome, hypermobility type).
OBJECTIVES: To evaluate progression of symptoms and joint mobility in the joint hypermobility syndrome (JHS) in order to identify specific disease pictures by age at presentation.
METHODS: Fifty JHS patients (44 females, 6 males) were evaluated by Beighton score (BS) calculation, and presence/absence and age at onset of 20 key symptoms. Incidence and prevalence rates by age at onset and sex were calculated and compared by chi-square, Fisher's exact test and Mann-Whitney U-test. Relationship between BS and age at examination was evaluated by the Spearman rho correlation. The existence of an age cut-off separating patients with or without a positive BS was analysed by the receiver operating characteristic analysis. Influence of age on the single components of the BS was also investigated.
RESULTS: Except for isolated features, the overall clinical presentation was the same between sexes. In the whole sample, statistically significant differences by age at presentation were registered for fatigue, myalgias, muscle cramps, strains/sprains, dislocations, tendon ruptures, tendonitis, gastroesophageal reflux, chronic gastritis, constipation/diarrhoea and abdominal hernias. A clear inverse correlation between age at examination and BS was demonstrated with an age cut-off fixed at 33 years. Among the components of the BS, spine and elbow joints were not significantly influenced by age.
CONCLUSIONS: This study confirmed the existence of a protean clinical history of JHS which may be exemplified in different phases with distinguishable presentations. The knowledge of the peculiarities of each of them will help the practitioner in recognising and, hopefully, treating this condition.
PubMed info here.
Re-posting this article from XOJane because it is so amazing. I hope you enjoy it as much as I do.
"It happened to me."
I've mentioned previously that I used to power walk through life. I considered myself a city walker, zipping from here to there, quietly muttering at tourists under my breath as I swiftly scurried around them. Now, my walk has no zip. I more so gimp around my neighborhood, and watch as people three times my age easily leave me in their dust. I don't mind the slowness of my gait so much as strangers' reactions to it. More than once, I've been told (usually by older men) to "get out of the way," "quit goofing around" and "stop playing around with your gadgets." I might add here, in none of these cases did I have a Bluetooth or a cellphone on me. Once, I ended up entering the same store as one of the men. I (nicely) told him that I am not "goofing around," but that I walk slowly due to pain and disability. He turned a shade a light tomato, but I'm not sure if he believed me. In all, these situations leave me angry and frustrated. I never know what to do. I feel like ignoring the offender leaves them off the hook too easily and allows them to think that their behavior is OK, but I don't want to have to confront and try to educate every rude person. What is your method of handing these types of situations? Leave your ideas and suggestions in the comment section!