Introduction and maybe a bit (lot) venting

Support
1

Hello everyone!

I'm very new to this place (just found it two days ago) and already, I'm completely taken :)

I hope this is the right place to write in, if not, I'll remove and post it somewhere else. First of all, I'd love to introduce myself. My name's Lena (or you can use my nick Dwaggie) I'm 29 years and from germany. My english might be a little awkward at times, please bear with me and don't hesitate to correct me if I make mistakes :)


I got my diagnosis 2 years ago, after rheumatic diseases and a few other things had been ruled out.

I'm always a little chaotic.

Sadly, I'm very often sort of distracted.It's partly the ADHD that makes it hard for me to focus, but lately, I've noticed that I'm starting to get confused more easily and sometimes people tell me things and I have trouble comprehending what they want from me. I hear them, but the meaning is hard for me to get. It's not really that bad yet, but it's started to be noticeable.

In general, I'm a happy person. I can laugh and giggle everyday, I love looking at "internet humour" like Memebase things and I can laugh at the silliest, most immature and sometimes evil things. I love laughing and I'm happy to say I still find something funny/sweet/amusing in my every day.
I work as a social worker / nursery teacher, with babies and children up to the age of 3. And I love it. The work is very, very taxing for me. The kids are annoying sometimes and really, it's hard work, physically and mentally. I know I won't be able to work with them forever, no matter how much I love it. I've had back problems even before I started working (hollow back and a slight hunch, I think it's "sway back" but I'm not sure if it's the correct term, my back is in a harder S-curve than it should be)

I'm fine most of the time, only suffering from tension in the neck/shoulder area and sometimes a stiff lower back. I've had two dislocated vertebrae during university and the doc said I'm in for a dislocated/herniated disk at some point, but I'm just trying to be careful with it. It runs in the family, really.

I can joke about it, and most of my other little ailments, because I don't have it bad. Even with the fibro. I feel bad, occassionally, for telling people I'm feeling unwell or am in pain, because I don't feel it's warranted. Especially not with all the things I read and hear from other people with fibro. I'm lucky and happy to say I am not or not yet in permanent pain. The fibro, for me, mostly means being exhausted and stiff.

It's... mmmh... I think what makes me sad the most is, that while I can work fulltime at the moment, I have little to no energy for anything else anymore. I used to draw a lot. And I mean a LOT. But now, I haven't drawn in weeks, it sometimes hurts my hands to hold a pen. Or a knitting needle.

In general, holding small objects hurts really really bad at times. Is anyone having this problem? I can carry heavy grocery bags with little difficulty, but holding on to a single sheet of paper or a folder or a pen with one hand for more than half a minute becomes painful very fast. I've been tested negative for rheumatic diseases, since it was what my former doc thought.

Drawing is what I miss most, because it was a splendid form of venting and focusing my thoughts to one thing. I have so many ideas in my head, but I'm too lethargic to even pick up a pencil anymore.

Currently, I'm in a new psychotherapy. My personal opinion on the cause of my fibro is: Stress. I'm stressed nearly 24/7. I've been stressed as a child, I've been MAD stressed when I was hitting puberty and I think I've been born stressed. Due to the ADHD, I've always had troubles with finding friends and making contact and I've come home crying from school a LOT. Even when I was growing older and a little calmer and withdrawn, I've always had few friends and that, added to a growing problem with severe anxiety disorder, depressions and panic attacks only served to have me running on adrenaline much. I think somewhere in my teens, I've un-learned how to relax.

Even when I sit down to watch a movie or finally get up and meet with a friend to go swimming, I'm not relaxed. Not as I would define relaxed. I'm near constantly worried and mulling things over in my head, pleasant and unpleasant things.

I'm, what I like to call a "head person". I live in my head and in my thoughts and I just.. think a lot. Thinking here does not always equal anything philosophical or worldshaking.... just.. thoughts.

I'm a horrible know-it-all. I think I'm medium smart, I'm full of useless knowledge and I pick up information rather easily. I admit, I'm rather proud of having a slightly-above-average IQ (tested 118), and to be able to have been to university and managed a bachelor's degree. I value intelligence very much (though, intelligence doesn't mean being a humourless spoilsport, it's... just a way of acting in certain situations and making certain choices. It's hard to explain)

The therapy lady has started digging and discovering that I have serious coping issues. I've been hurt in the past and I never had the ability to really deal with those things. I'm the person to be sad a little time and then look for something to distract myself with until it stops hurting.

It's like that with the fibro. The fibro scares me. A lot. I don't know what will come, I don't know if I'll be able to provide for myself, if I'll be able to manage when/if the pain starts to worsen, I don't know what'll happen if I lose my job, I am afraid I'll end up sick and poor and alone and I can't DO anything to relieve those fears because... there's no telling what will happen. So... to not fall into the dark, endlessly deep pit of despair and fear and depression and uncertainty, I try to tell myself everything is fine. Everyting will work out somehow and I'll have some sort of good life and be happy with that.

Only problem is, sadly the things bothering me aren't going away, they've started to fester and grow like a tumor under my thinning shell of happy sparkles and sugar sprinkles. And I'm a little scared to crack a hole into myself to see what's boiling inside, because I can't tell if I'm able to deal with all that I've stomached over the time and had no outlet for.

I think that is, what's given me the fibro, as a warning sign of what I've been unconsciously doing to myself.. I really hope my therapy lady will lead me through this mostly unscathed. I much prefer being the happy, giddy, giggly, weird and silly little know-it-all than the depressed, bawling little ball of misery hiding in my belly.

I THINK... I've written enough for now XD

It wasn't meant to become so long.... but I get carried away easily...

To end this on a more positive note: I'm so so sooooo SO happy to have found this place and I hope to find inspiration in all of you to come around and deal with the fibro properly.

*huggles*

2

Welcome Dwaggie! I like your nickname. Where did it come from? I could have written your post as you sound just like me in so many ways. You will learn to cope with this and you will be able to provide for yourself if you have to stop working, even if it is with disability. You can have a fulfilling life if you have fibro- it just may not be the fulfilling life you thought you’d have. You will learn different things to keep you busy that don’t put as much physical stress on your body. And going to a therapist and working out all your issues is a great idea. It may not “cure” your fibro or other ailments but if you get all that other stuff out, I think you will be better able to emotionally deal with the fibro, which will, in turn, help you to feel better physically.

It is hard to learn to deal with this and with any other chronic illness. But you learn. You learn ways to adapt what you do so that you can complete tasks, chores, etc. for example, it took me two days to mow the yard the last time I did it because I had to take a lot of breaks and couldn’t do much at one time. But it got done and it looked great. When I pull weeds, I sit on the ground and scoot down the flower beds as it is difficult for me to stand for any period of time. I have a 75 year old neighbor who gets tickled when she sees me doing this and who also gets very mother Hennish when she sees me mowing. Other things get done when they get done. You will learn that things just aren’t as important and urgent as they seem. For example, I am redoing my kitchen cabinets. I am in the prep stage right now and am cleaning them in prep for sanding. I do maybe two cabinet doors in a day and I work o it maybe one or two days a week. It will take forever but it will get done. No sense killing myself with something that can wait.

I am sorry that I am rambling. I hope that you find some excellent guidance in how to deal with everything. Keep coming here. The people are great and they offer support, understanding and great information.

3

Hi Dwaggie!

I am so pleased to welcome you to the group, and your English is beautiful, especially compared to my German! What a difficult language to learn, at least for me, even if my DNA belongs there! I have an entire collection of tapes to learn the language, and for years played them to and from work, hoping to one day visit Bavaria.

My Rheumatologist very simply explained to me that the 'fog', confusion, retention problems were caused by chronic pain and lack of proper sleep due to chronic pain. I talked to a Psychologist for a few years, immediately after a car accident that I could just never get over, she helped me deal with PTSD from the accident, chronic pain, and just the change in my life that I was struggling to adapt to.

I have found journaling helped me, writing letters, even if they were never sent to those still living and to those who are not, but if your hands are bothering you, it is not the best advice.

There are many stages and phases we all go through with this, it is something that just takes time, just like MB said!

We are all here for you and wish you well, hope to hear from you often!

Big hugs,

SK

4

PS, yes, it is the right place!

5

Hi Dwaggie and welcome! I'm so impressed with your English skills! I would never guess that English is not your first language.

I'm always shocked and saddened to see people your age who are affected by fibro and yet it seems that a fairly good amount of the members on here are quite young.

I admire and appreciate your spunk and sparkle and yet I feel the sorrow underneath. Dwaggie, you may never be affected by fibro in the way that others have been. Fibro is different from person to person. But it is smart of you to think of what options you have if your fibro does change. I understand how difficult your job is physically and emotionally. Perhaps you could think about jobs that also involve children that are less taxing. Your writing skills could be used for writing books for or about children. Or perhaps you could focus more on the social work aspect. At any rate, while it is wise to always consider your options, we never know what the future holds, so it's impossible to speculate about what your fibro might possibly be like.

Have you ever considered trying to draw on the computer instead of manually? Perhaps it would be a way to still indulge in your favorite past time without the pain.

I have the opposite problem as you, i can hold small items but can't carry grocery bags. Although that changes in the coldest months. I don't know if I've heard of other fibro people who have pain holding onto paper or pen for a minute. i hope that some people will jump in and let us know about their experiences, as I'm a bit stumped by this symptom.

Dwaggie, yes, the confusion you note is a symptom of fibro. I experience it too, sometimes at the oddest moments. For instance, I'll stop at a green light briefly, sort of lost in a haze. It seems like the more tired I am, the worse it gets. Sleeping does help to keep this symptom somewhat in check. Resting is hugely important for those of use with fibro. That and pacing ourselves.

i will leave off here as I'm still very tired and sore from Christmas shopping.

Thanks so much for stopping by! I enjoyed hearing from you.

Warmly,

Petunia

6

MBP, that was truly a great post! Everything I wanted to say but somehow it couldn't come out of my mouth. What great advice for anyone seeking help with fibro. You should keep that post and pull it out from time to time for our newbies. It's just very, very helpful.

And DARN! You can still mow the lawn? And garden? Darn, you're good! I gave up mowing the lawn 3 years ago and gardening this past year. Boy, am I envious of you, girl! :-D

7

Welcome Dwaggie, Thank you for helping us get to know you better, I love your post… It’s all so very honest and true. I often think…exactly what you have been able to put on paper… That stress…and thoughts in our brain that just don’t seen to stop, it seems my mind is on a roller coaster that never stops, I’m sure I have adult ADHD… And I’m sure I had it in childhood. I like the “head person” analogy and lately have to really pay attention if someone is talking to me otherwise my brain just keeps going and I clearly miss what they said.
So please don’t remove your post, it really hits a home run! ( that’s an American slang ) means your right on. Lol, don’t worry at all about your English, most of us that we’re born and raised here don’t use it correctly… Funny story, but true… My first English class in college had red ink all over it and on the top the professor wrote DID U TAKE ENGLISH IN HIGH SCHOOL ?? Lol
I love your detail to description of how you feel !!
Hang with us, so glad your here !
Hugs

8

ah, finally time to reply :

My nick has a bit of a history XD I'm more or less active in the furry fandom (it's such a warm, welcoming community and I stay away from the bad extremes) My original nick is Blackdragon or Blackdragon-sama. That nick is often too long or already taken, though, so I shortened it into "baby language"(blackdragon - dragon - draggy - dwaggie) and now I use Dwaggie on a lot of non-furry or other boards :)

I'm so happy here already, everybody is so nice and I've actually had to cry a little because I was so touched ^_^

I really hope to finally find a starting point to work on myself and work with the fibro. I'm not that affected yet, but the things that do bother me will need working on. The therapy is a first step and I'm already looking for a good doc to start with my physical health. The funny thing is, even two years after the diagnosis, I haven't quite come around to fully *realize* I have a chronic illness. I mean... I know I have it, and I know about it and what it does with me, but it's still more in a moment-by-moment and symptom-by-symptom way. LIke.... let's say I come home from work and my back feels tight and it burns no matter which way I bend, I think "ouch, my back, the day really was long"... the "it's fibro pain" thought usually doesn't come until a while later.

In general, I know I need to tone down a bit. While I sure as hell am not a person that gets a lot of stuff done in general, I tend to have several "projects" at once. I guess it's part of the ADHD too, which makes it hard to decide what to do first and then to *stay* with that. XD

right now, for example, I'm sorting through several boxes of things to clean my living room, but I also prepare things for my felting marathon on the weekend, I'm moving around in confusion because I can't decide where to put certain items ect.(I get fussy and distracted with the tiniest things... like where do I put adhesive tape, my tool box or my desk box ect, then I find something in the tool box that bothers me, then I go find a solution for that, on the way I pick up a piece of paper and ten minutes later I'm in the cellar and cut apart cardboard boxes.)

It's a little amusing, but I'm always busy with at least 3 different things. I hope my therapist will teach me a bit how to focus on one thing and not get distracted, start 5 other things and then get lost in the chaos of it all XD

It's really not that horrible or destructive, it's just very annoying and maybe not really a good way to start relaxing.

*huggles*

9

thank you :)

rambling is completely okay, I don't mind at all ^____^

Ah yes, the carrying children bit.. right now I still can, which is good for work, but it's already harder than it was a year ago. It's not even the "heavy" part, since I consider myself as having normal strength, but it starts hurting bad after a few moments.

At least you can have them sit on your lap, right? Or hug them when they're sitting next to you :)

I don't have children, and I don't think I'll go through the risks of pregnancy. But I love kids and I'm happy to work in a nursery, where I can be a part-time-almost-mom for them. It's almost perfect, because I can give my nursery babies all the love and affection I feel and still go home and have the rest and peace and quiet I need.

I admire your activeness. I hope, if it get's as bad as making me unable to keep my job or working at all, that I can find something to busy myself with. I've been unemployed for 3 months in between jobs and it was horrible XD I gained so much weight and I basically was striking roots in my couch. I don't go out much on my own (okay, I don't go out at ALL on my own) due to a distinct case of agoraphobia (fear of open spaces/the outside world) I can go to work, because I MUST, but I can't get out to do something nice. But I'm working on it ^_^

I hope to find something like you have, to not start rotting in my home XD

The fog is something I can relate to, but again, I'm lucky to not have it too bad. I write down important things. And REALLY important things I write on my hands and arms. I'm always having some sort of note or comment or words on my arms to help me remember the most important/urgent things. It may look silly, but it works for me.

*huggles*

again, thanks for the warm welcome!

10

Thanks, Petunia. I do have flashes of brilliance from time to time. LOL. I do things like mow the lawn with lots of breaks cuz I feel like I need to keep moving. Do I pay for it? Yeah but it is worth it.

11

Thank you :)

I love the english language and I'm even trying to write a story (fanfiction) in english. It's slow going, since I'm rather nit-picky with my wording, but I think it's a good way to practice. I learned a lot by reading english books (I read a bit of harry potter and lots and lots of other fanfiction online, always with my huge dictionary lying right next to me XD )

But yes, I agree that german is a very difficult language. Especially since it has so many dialects and accents. Aside from that, all those genders for things and the grammatic isn't simple, either. I prefer english over german most of the time. But, for example, in action movies, the hard sound of the german language adds to the feel of it all, english can be a little soft sounding sometimes ^_^

Bavaria is nice, I've been living in different areas of bavaria all my life :) If you ever plan to come here and need recommendations where to go or what to see, let me know!

Oh yes, lack of sleep...

sleep is a strange thing. Sometimes, I'm all fit and well-rested after as little as 4 hours. On other days, I sleep for 10-12 hours and feel like having been dropped off a house face first. I've always had a light sleep, waking several times at night to roll over (seems my body thinks it can't do it while I'm sleeping XD ) But while I feel, subjectively, that I get enough sleep (I'm an early bird and usually awake at 4-5 in the morning, when my alarm goes off at 6) I get very sleepy at around 2-3 in the afternoon and between 6 and 9 in the evening. So.. sometimes I fall into bed right after work and sleep 10 hours straight. Sometimes I can't find sleep until 2 in the morning XD

I just take sleep as it comes, forcing it won't work, I know.

I'm sorry to hear about that accident. But I'm glad your therapist helped you :)

I actually was thinking about writing letters to people I have unfinished issues with. It probably sounds bad like that, it's nothing severe, just some things I'd like to have a closure for. Maybe I'll take your advice and write them letters, and decide whether to send them or not after christmas. My hands are luckily fine with typing, so I can write them digitally and print them out if needed (I've always had horribly illegible handwriting LOL )

*huggles*
I think I've written it all over the page already, but..

I love this place so hard already! All of you are so very awesome! Thank you ^__^

12

Hey :)

thank you!

I read that fibro often starts in the mid-20s, so I'm pretty much right there with the statistics. I was shocked to read about a girl (I think somewhere around here) is affected by the fibro at the age of 16. I think with almost 30, I'm not too young anymore. I know when I was 16, I wouldn't have been able to handle the diagnosis.

Luckily, with my BA degree, I can later on switch to a desk job, which isn't as physically hard to handle. With some luck, I can also cut hours and at some point work part-time. I just need to see how much I need to earn to make ends meet. I live in munich and the rents are crazy expensive. OH WELL I think those are the thoughts that will definitely have to wait until it's time and I really need to make such decisions.

Oh, I draw both traditionally and digitally :) sometimes I can handle one better than the other, but they both work with pens (I only have a laptop and no mouse and I can't work as well with a touchpad)

I'm always curious to hear about other people's symptoms, It makes me understand all of this better. And sometimes it helps me understand my own body better. Like the dizzyness. I was so scared it might be something serious, but now I heard it might be part of the fibro, so I can be a lot more relaxed until I can get it checked out.

OMG yes... I had that once.. it was several years ago, so I'm not sure if it was actually a symptom or not, but I was in the car and stopping at a red light. And... the next time I'm thinking again, I'm somehow in the middle of the crossroads, with the red light still on. Luckily, nothing happened, but you can't imagine how shocked I was XD Sometimes when I walk to work, I pass the building and have to stop a few meters later to wonder why the hell I haven't noticed I was already there. Sometimes, I get lost in things (like looking at pictures, writing, reading or something of the like) that I need to deliberately force myself to return to reality. Sometimes it feels like I was somewhere else entirely, spaced out, not existing in this time and place. It's a funny feeling, not really unpleasant, just very confusing when you suddenly realize you're sitting on your couch as if it's the last place you should actually be.

^__^ I enjoy christmas and doing christmassy things like present shopping, looking at christmas markets and sparkly lights and christmas tree balls and decoration and everythings so sparkly and starry and it smells nice (I love nice scents) and... mmmh, christmas spririts 8D

*coughs* this was kind of random, but I hope you still enjoyed the shopping and the soreness was at least a little worth it

13

You fit right in, girlfriend! Your English, right down to the sayings, and the slang is just perfect! Sometimes when the pain is high, and the fog rolls in, I can't remember how to spell 'CAT', so do not worry about your grammar, please! Some of us have arthritic hands too, that is a factor for disaster sometimes, but no one is that judgemental.

I am already convinced that you could write a great book, Petunia girl already has! I know about the dictionary, I slept with dictionaries and encyclopedias all of my life, have a great library on ancient Egypt, some first editions from Egyptologists back in the 1920's when King Tut was discovered. There is some dry history that I enjoy reading.

There is a fairly new member, 'prof' is the beginning of his group name who is a history major of Native American studies, wants to work at their museum at the Smithsonian. Very nice, interesting man.

Thank you, if I can ever get to Bavaria, I will surely ask for your advice on what to do, where to go, and if we're lucky go out for a beer! Wouldn't that be great?

My handwriting was always very beautiful until the arthritis hit, now it is shamfully bad, oh well, I am still on my feet, so things are good!

It is so nice to have you with us, so many very nice folks here, and you just fit like a glove!

Big hugs to you, wishing you well,

SK

14

Oh, writing a book would be nice. I've thought about writing and illustrating a children's book before. I don't know if I could pull off a full book, as I can't stay on track long.

The ancient egypt is quite fascinating! I'm not that much of a history person, but I've seen and read some about it :) I admit, I am very amused by the theory about the pyramids and aliens. I'm not "a believer" at all, but it's fun to think about the possibility XD

My handwriting has been bad since the moment I picked up a pen. XD While I can draw, I'm too impatient to write pretty. When it's really hurried, it looks like a bunch of squiggly lines and sometimes I can't even read it myself

*hugs back*

15

Hi Dwaggie,

Well to me, 30 seems young to get fibro, since mine hit in my mid 40's. And yes, there are people here who've had it since their teen years. Some people have stated they think they had it since they were small children. That's truly humbling. I can't imagine growing up with this pain and somehow thinking that it's "normal."

Yes, see, you have some very solid ideas about how to handle things in the future, should your fibro progress. There you go! I think you were probably just a bit freaked by the idea at first but you've got a good head on your shoulders.

I didn't realize that digital drawing could also involve a pen (I only see mouse drawing) but it makes sense if you're doing something very intricate. It really does stink that your fibro is centered a lot in your hands, since you love to draw. Too bad we couldn't at least choose the places to have it hit.

I know exactly how you feel when you "zone out" while getting lost in pictures, etc., and it's not an unpleasant feeling...it could be your ADHD or else the fibro or perhaps even small seizures. It's always, always happened to me but I have mild ADHD. Nowadays I get those "red light" minutes more often though and they're worrisome. I KNOW it's the fibro but I don't LIKE getting that confused.

Oh yes, everything that you write about christmas and christmassy things is completely true! And yes, the shopping was fun and a little worth it...if only my knee would calm down though.

Cheers,

Petunia

16

I'm just glad I got my diagnosis rather quickly. I think I might have had light symptoms connected to the fibro for a few years before, maybe from my early/mid-20ies, but after my hand started hurting for the first time, it was only 3 months until I was told I had fibro :)

I consider that a very, very quick diagnosis, since a lot of people take years of hopping from one doc to the next before they are diagnosed

That's why I think it might get worse. From what I heard and read - though I can be totally wrong - it seems to start with lighter symtoms and then get worse until it hits a certain... level. I'm not waiting for it to become worse, really, I'll be happy to assume it'll stay as it is as long as it stays as it is, but I'm not expecting myself to stay as semi-fit as I am now. .... does this make sense? XD

It's not like "hoping for the best while expecting the worst" but rather... prepare for the bad while taking things as they come, good or bad.

I know some people who can draw with a mouse, but I can't XD It actually takes a lot more talent to do it with a mouse. I don't know if you're interested, but if you want, you can have a look at one of my online galleries here: https://www.furaffinity.net/gallery/blackdragon-sama/ :) (i realize it might be a shameless self-adulation... but.. yeah, I'm just like that sometimes)

Luckily, I don't have these moments bad or very often. I mean.. I do get distracted a lot. A LOT. But I usually still know where I am and what time it is and all those things. But sometimes, things around me just vanish. I haven't been driving a car for years (since I'm living in a big city now, which has awesome public transport) but I had these moments then, too. Once I was.. well, almost startled "awake" when I found myself hitting the brakes with both feet on the highway. Turned out another car pulled in right before me and was so close we almost crashed. I was hitting the brakes before I even knew what was happening. It was kind of scary, but I love my reflexes that seem to work even when the rest of my mind is somewhere else XD

It's... scary, but luckily, it's rare and when I'm safely sitting in a bus or tram, I don't have to fear causing an accident ^_^

I hope your knee will be better soon and you can enjoy more of the christmas spirits! Do you have snow where you live?