Saturday, September 19, 2009

Constant Struggle

I guess you could say I still haven't accepted my diagnosis of fibromyalgia. I'm only 22. I'm too young for this, right? How does a bad infection lead to an incurable disease?

Sure, the pain is real, the depression, migraines constant fatigue and the myriad of other symptoms are real... so why can't I accept that the disease itself is real when it's had such an impact on everything else. When I see Dr's who don't believe this disease is real, it gets ingrained in my subconscious and I start to think I'm just psychosomatic.

More than anything, I've wanted to be a field archaeologist. But when I returned to the field this past summer to continue excavations on a Roman Britain site just south of London, I couldn't do it. The energy wasn't there. The pain was too great. The migraines were overbearing and as much as I love sleeping in a tent and roughing it for a couple months, my body just can't handle it. What do you do when your dreams are shattered by something you can't even begin to control or understand?

There's this vicious cycle of pain-depression-pain that I can't seem to break. I blame myself for being so sluggish and exhausted, but when I try to accomplish things, the pain only increases until I'm debilitated. My activity level has gone almost to nil. I missed a whole year of classes trying to figure out what's been wrong with me. I've lost so much time and feel like I've failed myself, that I'm continually failing myself. I'm stronger than this. Why am I submitting?

I know I've always had extremely high expectations for myself. Sometimes they're way beyond my reach, and even though I can see that, I still expect myself to be able to reach them. But this... horrible barrier has all but broken me and I just don't know how to cope. I worry that there's no solution for the pain constantly throbbing and burning through my legs. Narcotics do nothing, nor do I particularly want them. I'm starting to consider using MJ medically, but I still worry that it will just make me lazier and I still won't get anything completed. Even with my strict discipline, I fear falling back into an addiction I just recently broke out of.

I guess I just don't know what to do, or how to help myself. I'm frightened and I feel alone in this, although I know I have plenty of support. I feel guilty for cancelling plans with friends, not making it to class, not being as productive as I used to be. I'm open to any thoughts, suggestions, anything at all. Any help would be so greatly appreciated. Even just knowing someone understands is more than enough. I don't like being this vulnerable, but I know I can't let my pride stand in the way of getting the help I need.

Sunday, September 6, 2009

I feel so selfish when I have to make my parents come home because it's not safe for me to be by myself anymore. I never thought i'd bring myself to ask, but it was either that or something much worse. I feel like such a burden becase I can't even be trusted to be alone when I crash and burn for absolutely no reason. I thought I was passed this, I'm not 13 anymore. But here it came again, forcing me to be sedated so I stop twitching and bawling, causing me to vomit up the medicine that's supposed to be my hold on sanity. I've never felt more ashamed and pathetic, which only leads to anger the need to punish myself for another failure. I'm glad I've made so much progress. Good job self. Way to fuck it all up again.

The one thing I want more than anything else I don't feel like I have the right to ask for :/

Saturday, September 5, 2009

5/09/09

I don't even know why I'm writing on here... I probably shouldn't be, but it's not like I have anything else to do. That's a lie, I just don't want to do anything... at all. I definitely don't have a reason to be this emotional right now, and yet I'm such a complete and utter train wreck. No, it's more like a train ran into a nuclear power plant. I don't remember the last time I cried like this. I probably at least had a reason then.

I used to love being alone. Now I can't stand it. It's terrifying be left alone with your thoughts when you're so mean to yourself. At least when someone else is here, I'm not beating myself up for being so behind in school, for being too sick to do anything. I keep telling myself I'm psychosomatic since no one ever finds anything wrong. I must be lying to myself, right? There's probably nothing even wrong with me, besides the fact that I'm a headcase.

Why the fuck can't I focus? Why don't I care? What happened to me? I used to have so many friends but I've become this horribly antisocial person who never talks to anyone anymore. I feel like I've been taking steps backward from my complete meltdown last year, and I can't get out of the cycle. I was going to be so successful... but now what? Why don't I care? Why do I want to go into a dreamless sleep and never wake up? Why am I so heinously depressed? I have no right to feel like this. I have everything I could ever want.

But this has just been the past few days, right? I don't always feel like this. I was happy recently. I remember saying it, but I'm so far down that hole right now that I can't remember what it felt like. I have no faith in myself anymore, I have no faith in the world. Everything in this country is going to shit, so what's the point? I didn't used to roll over and give up, but it's like the fight has been sucked out of me. I want to know what happened to the happy, opinionated, friendly, social me. I liked her. She was actually accomplishing things I don't like this selfish, greedy, empty shell.

See, I shouldn't be writing, but I don't have any other outlet. I know I don't always feel like this. I couldn't- I wouldn't have made it. But when you're trapped in this void, it seems like there's nothing else. I'll just continue to count on myself to cope the only way I know how.

Tuesday, August 4, 2009

:/

I know it's been awhile, but nothing's really changed and whining about fibro pain gets old really quickly. I know no one wants to hear me complain. Hell, I don't want to hear me complain either. Anyway, this was my summer. It was... well... not as spectacular as last year.

I was really hoping that when I went back to England this summer, all of these medical issues would magically disappear and I'd be so ridiculously happy to be playing in the dirt that nothing would matter. If only. I was supposed to be on site for 8 weeks, including debackfill and backfill, as well as the six regular weeks of digging. Unfortunately, after the first week, which was just preparing the site for the students, I was already feeling it. I pushed it another two weeks before talking to my parents about how miserable I actually was. I'd put on that facade of "everything's wonderful!" for as long as I could. Not only was my body rebelling every chance it could, my migraines had increased to anywhere from one to four times a week. Not only did they become more prevelent, but they've started inducing vomiting and triggering the rest of my pain into starting super flares. The constant rainy weather kept my joints achy and non-functional. Every time I bent down my knees made a horrible cracking noise and half the time I fell over. There were nights I couldn't sleep at all because my hips were throbbing so intensely I couldn't find a comfortable position that took enough eight off of them. Even codeine didn't seem to even dull the pain, nor did alcohol. I didn't get to go to a single party at Silch. Pirate night was hindered by a migraine, as was beer festival. Other nights I was just too sore and exhausted to stay conscious past dinner.

In the end... well, I didn't make to the end. I decided it would be best to come home early so I wouldn't end up back in the hospital because I pushed it too far. I did, in fact, push it a lot more than I should have. Even though I'm back in a real bed, with a real shower and air conditioning, I'm still really struggling to adjust. I'm still covered in Tinea Versicolor from the humidity in England, which keeps me exhausted. I don't like being a host for some stupid fungus. The vasculitis seems to be returning and despite being in a dry climate, my joints still hate me. My migraines haven't eased up at all and I'm kind of at a loss as to what I'm supposed to do to help my body cope. I'm either sleeping all day, completely debilitated, or combating sleep paralysis and having horrifying hallucinations. Regardless of the amount of sleep I get, I'm sooooo very tired. I've tried keeping a normal schedule, and I've succeeded.... once. I can't keep my eyes open.

It's hard not to be depressed when you realize that your favorite activity can no longer be your career. There's no way I can be a field archaeologist if I can't even bend down to get close to the context, pick up a trowel, or even carry a bucket of dirt out of the trench. I'd be panicking if I wasn't too tired to care. It's also hard to maintain any kind of stable mood when you're physically drained and generally miserable. I'm losing interest in everything. Thatcher is annoying, Toby smells, the girls don't seem to care- except Akasha who gave me cuddles last night. I don't want to do anything because it hurts. I don't want to see anyone because I'm angry and I look pretty pathetic. It's hard not to burst into tears and lock myself in my room. Any relief I get is less than temporary. I definitely didn't expect this trip to make things exponentially worse, but it sure did.

I don't know what I want anymore. England used to make me so happy. I loved it so much more than anything else... but now I think it was just an escape and really isn't any better than anywhere else. It was just a fantasy... that died violently. So now I'm lost, I'm grumpier than normal, and I'm ready to crawl back under my rock. I've been in one of those, "what's the point of anything?" moods for the past few days. I'm sure it will pass... but it's really hard to get out of and look at things from a more optimistic perspective right now. I'm much better at brooding and I don't have the strength to be a bigger person right now.

Wednesday, April 29, 2009

:D

It's so nice to feel like your life is getting back on track after a long hiatus. School is arranged for fall, dad is doing so much better, I have the answers concerning my own health - with the exception of the sleep issues, and england is only a short few months away. Everything has come together, despite the 3048573085 obstacles.

These past few years have been ridiculous. But really, I guess that's just life. And even though it's been difficult, I'm still here. I'm still breathing, and I keep moving forward. Albeit, I made some stupid decisions that got me off track, but who doesn't? We learn, we grow, and we move on. Holding grudges is a complete waste of time and energy and even if someone wronged you along the way, you deal with it... and you sure as hell won't make that mistake again.

And through everything; the ups and downs, the good times and the horrrendous ones, there have been friends who have stood by me. They've watched me repeat the same mistakes, do ridiculously stupid things, and yet they're still here. I will never be able to thank them enough for continuing to stand by me, refusing to let me fail myself.

And then there's that one special one who has been there through the years and seen me at my absolute worst. She picked me up, dusted me off, and forced me to stop being so self defeating. She's been there through everything, never once letting me down. She's been my strength when I didn't have any left; the foundation beneath my feet. She's mades me want to try harder and constantly do the best that I can not only for her, but for myself. She was always there with advice, support, everything and anything I could possibly need. Somehow she systematically broke through all the barriers I put up to protect myself and she doesn't care that I'm a big weirdo. In fact, she seems to like it. I know I can tell her anything and I'm not afraid to let go of those defenses because I trust her completely. Somehow she's had the patience to put up with me, and she's taken the time to get through to me, never once making me feel pressured or inadequite. There is absolutely nothing I wouldn't do for her. The only regret I have is that I didn't see it sooner.

Anna, I hope you know how much I love you. I'm so very grateful to have the honor and priviledge of having you in my life. Ew, I'm all teary. You've given me the compassion I needed to get back on my feet. You even don't mind the moppy muppet, even though he has horribly inappropriate timing. You are so much more than I could ever have hoped for, and you continue to amaze me. Saying thank you just doesn't seem like enough. I truly hope that I can be everything for you, that you are to me and I will keep trying to express my gratitude in any way possible. Know that you can come to me for absolutely anything. You have me completely, and I wouldn't want it any other way <3

Thursday, April 16, 2009

4/16/09

Everything is so stressful right now. My mom was recently in the hospital for a few days due to a bowel obstruction. My dad's having open heart surgery soon- which is terrifying. It seems like everyone in the house is depressed about something, be it money, health, or because Thatcher won't stop barking at Toby for no apparent reason.

I haven't written anything lately because there just isn't anything left to say. Nothing good has happened and no one wants to hear about the continuous crap that just keeps coming down. The only real new thing was the confirmation I knew was inevitible. I thought maybe it would make me feel better to get the long awaited diagnosis, but it's only reminding me that this isnn't curable and I'll have to deal with it the rest of my life. I know it could be a LOT worse than fibromyalgia, and I'm exceedingly grateful that it's not. However, having an incurable disease just doesn't really life one's spirits. It's no wonder I play by myself online all the time when my reality just keeps getting more painful. But I'm not going to whine about it. Instead, I'm going to inform about the weird, not very well understood disease that is actually quite common. And yes, I stole this from Wiki. I read it first to make sure it wasn't bogus info.

Fibromyalgia (new lat., fibro- fibrous tissue, Gk. myo- muscle, Gk. algos- pain), meaning muscle and connective tissue pain (also referred to as FM or FMS), is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch (tactile allodynia).[1] Other core features of the disorder include debilitating fatigue, sleep disturbance, and joint stiffness. In addition, persons affected by the disorder frequently experience a range of other symptoms that involve multiple body systems, including difficulty with swallowing,[2] functional bowel and bladder abnormalities,[3] difficulty breathing,[4] diffuse sensations of numbness and tingling (non-dermatomal paresthesia),[5] abnormal motor activity (i.e. nocturnal myoclonus, sleep bruxism),[6] and cognitive dysfunction.[7] An increased prevalence of affective and anxiety-related symptoms is also well known.[8] While the criteria for such an entity have not yet been thoroughly developed, the recognition that fibromyalgia involves more than just pain has led to the frequent use of the term "fibromyalgia syndrome".[9] Not all affected persons experience all the symptoms associated with the greater syndrome.

Fibromyalgia is considered a controversial diagnosis, with some authors contending that the disorder is a ‘non-disease’, due in part to a lack of objective laboratory tests or medical imaging studies to confirm the diagnosis.[10] While historically considered either a musculoskeletal disease or neuropsychiatric condition, evidence from research conducted in the last three decades has revealed abnormalities within the central nervous system affecting brain regions that may be linked both to clinical symptoms and research phenomena.[11] Although there is as yet no generally accepted cure for fibromyalgia, there are treatments that have been demonstrated by controlled clinical trials to be effective in reducing symptoms, including medications, patient education, exercise and behavioral interventions.[12]

The defining symptoms of fibromyalgia are chronic, widespread pain and painful response to touch (allodynia). Other symptoms can include moderate to severe fatigue, needle-like tingling of the skin, muscle aches, prolonged muscle spasms, weakness in the limbs, nerve pain, functional bowel disturbances,[13] and chronic sleep disturbances.[14] Sleep disturbances may be related to a phenomenon called alpha-delta sleep, a condition in which deep sleep (associated with delta waves) is frequently interrupted by bursts of alpha waves, which normally occur during wakefulness. Slow-wave sleep is often dramatically reduced.[citation needed]

Many patients experience cognitive dysfunction[15] (known as "brain fog" or "fibrofog"), which may be characterized by impaired concentration,[16] problems with short[16][17] and long-term memory, short-term memory consolidation[17], impaired speed of performance,[16][17] inability to multi-task, cognitive overload,[16][17] diminished attention span and anxiety and depressive symptoms.[17] "Brain fog" may be directly related to the sleep disturbances experienced by sufferers of fibromyalgia.[citation needed]

Other symptoms often attributed to fibromyalgia that may possibly be due to a comorbid disorder include myofascial pain syndrome also referred to as Chronic Myofascial Pain, diffuse non-dermatomal paresthesias, functional bowel disturbances and irritable bowel syndrome (possibly linked to lower levels of ghrelin,[18] genitourinary symptoms and interstitial cystitis, dermatological disorders, headaches, myoclonic twitches, and symptomatic hypoglycemia. Although fibromyalgia is classified based on the presence of chronic widespread pain, pain may also be localized in areas such as the shoulders, neck, low back, hips, or other areas. Many sufferers also experience varying degrees of facial pain and have high rates of comorbid temporomandibular joint disorder.

Eye problems such as eye pain, sensitivity to light, blurred vision, and fluctuating visual clarity, can also be a symptom of the condition.[19] As a consequence of this, sufferers who wear glasses or contact lenses may have to change their lens prescription frequently.

Symptoms can have a slow onset, and many patients have mild symptoms beginning in childhood, that are often misdiagnosed as growing pains.[citation needed] Symptoms are often aggravated by unrelated illness or changes in the weather.[citation needed]They can become more or less tolerable throughout daily or yearly cycles; however, many people with fibromyalgia find that, at least some of the time, the condition prevents them from performing normal activities such as driving a car or walking up stairs. The disorder does not cause inflammation as is characteristic of rheumatoid arthritis, although some non-steroidal anti-inflammatory drugs may temporarily reduce pain symptoms in some patients. Their use, however, is limited, and often of little to no value in pain management.[20]

That's just a small snippet. The treatment for this is pretty much based on your symptoms. I don't want to be on narcotics forever, so I'm not going that route. We're first going to work on my sleeping problems which will help pain in the long run. The Dr wants me to do a sleep study... which will be really interesting, assuming I can fall asleep while hooked up to machines.

So yeah, that's pretty much been the focus of the past few months and why I fall off the face of the map for weeks at a time. At least now it's being addressed so I'm hoping that we'll find a means of managing all of the 8999676 symptoms that have been tied together. Regardless, I'm still going to England and I've been accepted to ASU for next semester so this disease can suck it. I'm not letting it take over my life.


Tuesday, March 10, 2009

:)

I feel like I'm finally facing all of the issues that have been plaguing me, rather than trying to ignore them and mope about in self pity. I've been trying so hard to address the lack of trust, the cynicism, the anger and the depression and I think I'm finally getting somewhere.

People often tell me I always look pissed. Generally, I'm annoyed by something, but I'm rarely angry. It takes a lot to make me angry and even then, I usually internalize it and take it out on myself. But I'm not pissed, I'm just thinking about something intently, which usually makes me frown. I dunno why. Maybe I'm frustrated because I can't figure out whatever it is I'm analyzing. I tend to over think things and try to look at an issue from every possible perspective. So, it's no wonder I look brooding and angry. Life = complicated and I live in my head.

I know I'm extremely closed off and distant. A lot has happened in the past few years that I wasn't ready or able to cope with. Numerous deaths, the loss of what I thought were good friends, heart-break, diseases. I know none of these things compare to what some people face, but it has been extremely difficult for me to face a lot in my past, as mundane as it may seem. Currently, my dad is facing heart surgery, an uncle just died, one of my dogs is near his end, I possibly have an uncurable malady and I'm battling a depression that runs much deeper than I had previously believed. Right now it's easier for me to run away, be alone, and try to deal with things by becoming reclusive and facing them in my own, strange way. I know some people take this personally, and think I'm just ignoring or neglecting them. I promise this isn't the case. I have a lot on my plate right now, and I'm doing the best I can. It's bound to get better and I'm sure eventually I'll be less socially disabled. I've always been awkward, so I guess I'm kind of stuck with that. But that's ok- it's kind of funny.

I can't thank my friends enough for sticking by me while I made the same mistakes time and time again. Susannah, Jasmine, Erika, Jessye, Anna, Amy, Shaina, Jessica... I'm sure I'm forgetting people, and I apologize, but all of you have been such a wonderful support in my life, and I'm so very grateful to call you friends. I don't say it enough- I love you so very much <3

Things are definitely improving. I'm becoming more confident, accepting and comfortable with myself, my mistakes, flaws etc. It's still hard for me to view the positive aspects of myself, but I'm trying not to be so hard on myself and hold myself to such ridiculous standards that only a God could maintain. I'm going to be starting school again at ASU in the fall, and depending on what the Dr. tells me, I want to look for a job... I know... in this economy, good luck. I'm heading back to England this summer and I couldn't possibly be more excited. My therapist told me that all I need to do when I get upset is to think about England, because I light up when I talk about it to other people, regardless of whether or not they have any idea what I'm talking about. I know this annoys some people, but I don't know what it is about that place. I truly feel home, alive and completely content there. Maybe it's just all in my head, but that's ok. I don't mean to be obnoxious, I just want to share the joy I have.

I have great aspirations and I don't feel like they're unattainable anymore. I know I have more bad days than good ones right now, but I also know that those good times are still out there and I'll find them. I won't stop until I do. I deserve to be happy. I need to treat myself with love and respect and take the time I need to do so. I will get where I want in life and I've just hit a small road block. I'm so very lucky to have such supportive friends and parents and I love you all so very, very much. I can't thank you enough for everything you've done for me, and all the times you've been there when I needed you most. I can only hope that I can do the same for you because as much as I never want to admit such things, I DO need other people and I DO care, maybe too much. You all mean the world to me, and you've all helped me in my recent struggling. Again, thank you. You've seen me as I truely am, and you stayed. That kind of loyalty is such a precious thing.
<3