Coming to grips with a chronic illness

As some of you I'm sure have noticed that over the last year or so I really am having a seemingly impossible time coming to terms with my illness. It's ever changing and constantly reminding me of it's evil presence in my life...I like this excerpt that I read today...

" The sad reality is that living with fibromyalgia is, itself, stressful. The early period just after diagnosis is the toughest because you have so much to learn and deal with. But the stress doesn't end there. You have an illness that changes from day to day, and things need to get done in a world that doesn't slow down when you can't walk very fast. Learning to accept and manage as much stress as possible will help you in your recovery process.
Stress is often defined as a perceived inability to deal with a difficult situation. Yet stress is also the body's reaction to change, which means that it can be a catalyst for new thing and new behaviors. The challenge can be physical or mental - the definition is purposely broad. And, because each of us has our own perception of what a difficult situation is, what triggers stress is different for all of us.
It's hard to separate fibromyalgia from stress. It's stressful to be in pain, worse to have unpredictable symptoms... In fibromyalgics, chronic pain is the number one source of stress. That doesn't even take into consideration the stressfulness of the fact that you have had a complete change in your life from your fibromyalgia. It's even more stressful to have cognitive problems and push yourself through fatigue. Add to this the normal fibromyalgia symptom of anxiety and nervousness and you can see the problem. Even without any added stress you're using up a lot of energy that you can't spare. Here's what you should know: Stress is in the body and the mind. It makes us feel anxious, short-tempered, and overwhelmed. It's a vicious cycle that makes every single symptom we have worse."

---pg 123 "The First Year - Fibromyalgia" by Claudia Craig Marek

I think this reading makes several good points...it's kind of like which came first the chicken or the egg? In this case it's which came first today, the stress or the fibro? It's an ever changing circular dance between the two. I seem to constantly beat myself up for feeling "anxious, short-tempered, and overwhelmed" as the author wrote...I didn't see these "defects" as linked to my chronic condition/situation. I keep feeling like I've always been able to handle these situations before, why now is it so hard? What's wrong with me? and that's a shitty attitude to have!

Part of my struggle is that a huge part of my heart doesn't want to come to terms with this illness...it's unacceptable and how does one go about making the unacceptable...acceptable? I know that in order to pull off that miracle, my attitude is going to have to change dramatically. Talk about being anxious and overwhelmed.

I'm clearly my own worst enemy. I try to pretend that all is ok to the outside world and that is problem number one. I have to accept the situation that I'm in and make sure that others that are involved with me know that. I fear so much for burdening those around me, especially my friends and family. I know how hard it is for my son and husband...and I feel terrible guilt about it...I don't want to spread that dysfunction to others. sigh

I've got to get out of my head and put it out there. I've taken good steps at work and set some major boundaries in terms of how much I'll take on and how many hours I can realistically work, and low and behold...the earth is still spinning....who'd have thunk it? lol

The hard part now is being more vocal in other parts of my life. I don't bring up my fibro hardly ever...the only time I talk about it is when someone else brings the topic up. I don't want people to think I'm whining...on the flip side is that if I hold it all in, I end up whining on here or to my husband, which is NOT ok to continue....

Oop ack ick...where to go from here....the struggle continues...ponder ponder ponder.....

hobbz

National Fibromyalgia Association: Adjust Your Anger Management Style--Reduce Your Pain

National Fibromyalgia Association: Adjust Your Anger Management Style--Reduce Your Pain

I'm posting this link to an article about how suppressing your anger can lead to not only more fibro pain, but also increased anger....

This article really jumped out at me because I've somewhat subconsciously noticed that my anger has definitely intensified over the last few years. I used to be the most patient person in the world and now I find I live with alot of unresolved anger. Things that would have never bothered me before...can now insight me to great rage. I never really wanted to admit this to myself let alone to the world at large, but it's been a nagging thought in the back of my brain.

Has anyone else experienced this? What do you think of the article? I'd be very excited to hear the perspective of others on this topic

hobbz

Malcontent

I'm in a flare from hell, which has me honestly raging against this fricking disease! I try so hard to keep perspective, but right now my only thought is how exhausted I am from hurting and exhaustion...lol. I am barely sleeping at all and my legs feel like they are both being crushed AND are in a meat grinder, not to mention my neck and shoulder are hideously painful.

Sometimes I just want it all to go away! How does one keep perspective during a flare???? I just don't know. I know that it will pass at some point, but I'm tired of being 39 and alternating days between using a cane to keep my legs in check and not using the cane because my shoulder is killing me. I hate it I hate it I hate it!

But what can I do, but rant and rave, then suck it up and keep moving. Which I'm going to do, but really i have no choice here. And maybe that's what pisses me off the most. The fact that I have no control in what this disease is going to do, or when it's going to strike. I know there are folks that are much worse off than me, but right now I'm too marred in self-pity to care. yikes there's a statement!

so here I sit....frustrated and angry...and exhausted, and in pain...and fighting to not give up hope.

chronic pain and illness is constantly there no matter what....how does one finally come to terms with that? I go through periods where I think I've accepted my situation and I've laid all these feelings to rest. Maybe that is the problem....I expect to be able to lay it to rest, and not feel crappy about it anymore. Looking at that in type, it dawns on me that my expectations are warped...go figure. I need to find a way to accept that things WILL indeed suck in times of flares/pain/exhaustion....I'm just not sure how to do that just yet.

i'll keep you posted on that one.

hobbz

must sleep

So, it's 4 a.m. and I still haven't fallen asleep. ACK. My body will not sleep and is wracking my muscles with pain! I also suffer from restless legs syndrome, but tonight has been like my whole body can't stay still. I feel like I'm going frickin crazy!!!!!!!! I've tried breathing, reading, listening to music, listening to gregorian chants, hot shower, more breathing, flipping and flopping...and now I'm surfing the net.

God I hate this disease!!!!!!!!

Tomorrow is going to suck! eeerrrrr that is to say today is going to suck...since my son gets up at 6 a.m.....wish me luck

hobbz

My week off has come and gone already...sigh

My week off was truly wonderful!!!!!! The days seem to just fly by when you don't have to work. I felt like I accomplished alot, but I did pay for it some, and spent the following week using a cane. The culprit was pruning those damn lilac bushes...it sent my back and hip over the edge. I know my neighbors must think I'm crazy, with the sporadic bouts with a cane. "does she use a cane or not????" lol

As usual I was very aware of how much better I feel when I'm not working. I took half the pain meds I normally do, and I felt like I could rest when necessary and still have time for all the house stuff. It sends me right back into the dilemma of to why am I working? Outside of needing to support myself of course *grin*

I go thru this debate about every six months...and I just don't think there is a "right" answer on this one. So for right now I'm just continuing on as I have been and hoping that if the time comes where I need to quit...we will be in a financial situation that would make that feasible. My husband is so incredibly supportive of me no matter what and that really helps. My job flexibility is key too. If I didn't have the opportunity to work from home when I need to, I wouldn't be able to work at all...so really right now I guess I have the best of both worlds...hmmm never satisfied???? I don't know.

So the weather is still amazing and I've been able to hang up my cane for the time being so I've tried to continue to walk and keep working at moving, without overdoing it. Progress? you ask??? just maybe.....lol

hobbz

Spring has finally arrived

Spring has definitely sprung, here in Anchorage, Alaska... and that makes it just a little more difficult to focus on blogging. At least that's my story and I'm sticking to it. We are gaining more and more light by the day and it makes such a huge difference on how I feel. Not to mention the fact that it's amazing to be able to get out into the sunshine and be outside.

In terms of the fibro...life is so-so at this point. It's 4a.m. and I've yet to fall asleep tonight, and that is pretty much par for the course for my last couple of weeks. I got all ambitious yesterday and pruned a whole 2 bushes and now is my body ever feeling it. My back is a mess and my neck and shoulders are so tight I've developed one whopping headache. I have to say that it's waaaay frustrating that such a simple task takes such a huge toll on the body.

I have this whole week off from work and my plan is to focus specifically on my physical and mental health. I'm going to start walking daily and try to lose some of these nagging pounds that are weighing me down, I'm going to check in at our local YMCA as well and maybe try some swimming since it's non-weight bearing I'm hoping it will help me not feel quite so much pain after working out.

My focus of late has very much been on self improvement, which I think is why I've shied away from blogging. I've been doing a lot of work around improving my self image and defining who I am, separate from being a wife, mother, employee, etc. This has proven to be a challenging journey, as I've found that I really don't like myself all that much. In turn I tend to beat myself up for not living up to my unrealistic expectations. Obviously being a fibromite this doesn't work in my favor...sooooo....I'm taking the steps necessary to change my old thinking patterns and I'm trying to replace them with healthy realistic tapes to play in my head.

I've spent a huge amount of time looking at what fms takes away from my life...I'm really at a point where I'd like to live life within my limitations, IN SPITE OF MY fms. Wow what a concept that is? I've always hoped, (when going thru difficult times) that this time I'll get it, and then I'll be done with self-discovery, and self-improvement. Reality is, however, that this life is a journey and I need to understand that I'll never just get "it" and be done...I'll always be in a state of flux and that's ok. It doesn't make me flawed, it just makes me human.

So my flawed self and I are trying to branch out and try new things. I've used my fibro as an excuse to hide from new things and experiencing life for too many months now. As long as I work within my bodies limitations I should be able to try and do all the things I've always loved and wanted to do. Just because I can't do a several day hiking/camping trip...doesn't mean I can't do easy hikes in town or short hikes close to town until my body builds up some stamina. My doctor has advised me that initially when a fibromite starts doing physical things the pain and punishment afterwards is quite bad, but, ...IF one can get past that period, the physical activities actually improve the pain and fatigue that accompany us day to day. So I'm going to give it a try and see how it works. I have a week to recover from any pain that I may inflict upon myself, right? lol

The key for me is to go slow and build up to things. I have a tendency to jump out there and try to do what I used to be able to do, and then get discouraged when that doesn't work. (notice I didn't use the word "fail") lol. So "baby steps" is the motto for this week. I'll keep you posted on how it goes.

It all needs to begin, however with some sleep! So I'm off to stare at the ceiling some more and see if I can't get a few winks before my son is up and getting ready for school.

I love you all!!!!!!!!!!!!!!

hobbz

Ups and Downs

It's definitely been a week of ups and downs. My FMS has kinda settled down since my last post, but now I'm preparing to throw it into flux again..."preparing" u ask? Voluntarily you ask? Why? Well my husband and I have decided to try and get pregnant. Part of that, means weaning off some of my meds., the ones i'm most scared of not having is my pain meds. Ack! I'm not quite sure how to get thru a year with no pain meds. Has anyone else out there been in this situation? What did you do? I would greatly appreciate any input that you may have to offer.

Gladly though, other than being more tired than usual, my symptoms seem to be in a relatively goods spot right now. I of course, hesitate to write that for fear that I've now just jinxed myself...lol

I hope all is well with everyone out there and appreciate any advice/experience you might have to offer with regards to pregnancy, fms, and medication.

hobbz