Sharing from the heart

[cshubert]

I know a lot of us come to this site looking for answers, support, and people who understand what we're going through, and that is wonderful. But, if I'm being honest, I think there are times when our posts can verge on the "woe-is-me" side. Because I've been there too, I wanted to share something from my heart with you all that may help...especially those of you who are new to your disorders.

I don't talk publically about my health issues and chronic pain much because I don't want people's pity and I don't want people to treat me differently. As a result, I have suffered mostly in silence for the last 8 years. But knowing that there are others out there suffering in silence like me compells me to share this post.

It took me YEARS to even begin the grieving process of having chronic illnesses. For years, I refused to allow myself to grieve because I felt that if I did, I was giving up hope. Hope for a diagnosis. Hope for a cure. Hope for answers. Hope for a treatment. And mostly, hope for a return to the way things used to be.

But sitting in a place of denial only led me to anger and bitterness. Once I finally let go and accepted the chronic pain and illnesses that plague me, I realized that acknowledging the illnesses wasn't the same thing as giving up the fight. More importantly, I realized that now more than ever, the fight is crucial. But I finally realized I'd been fighting the wrong battle.

Accepting chronic illness is NOT giving up. Sitting on the sidelines and waiting for your old life to return...THAT is giving up. It's giving up on the idea that there could ever be a life beyond the old "normal". It's giving up on the idea that your life could still have meaning, value, and purpose while being chronically ill.

I am NOT the same person I was 8 years ago. Some days I can function on a level that is somewhat "normal". Other days, I have to use a cane just to walk from the bed to the bathroom. Some days I can move up and down the stairs without issues. Other days, my leg/knee/ankle gives out at the mere attempt to bare weight. Some days I can do my daily chores and go out and about. Other days I cannot even get out of bed.

Chronic pain and chronic illnesses are frequently invisible to the outside world. People look at me when I'm out and about and think there's nothing wrong with me. But those same people don't see me at my worst, because at my worst, even just leaving my bedroom is an accomplishment.

I spent a long time feeling sorry for myself. Feeling angry at my body for betraying me. And refusing to do anything that required assistance (using a cane, using a motorized scooter, etc). But one day I realized that my body is a true hero...a fighter beyond expectation. When most people would lay down and die, my body says "No, we can make it one more day." Day after day. Pain after pain. Flair up after flair up. Loss after loss. My body still says "Let's try one more day." If my body can fight one more day, then so can I!

My legs may not be able to run any more, but I can still walk. My arms may not be strong enough to carry heavy weights any more, but my arms can still hug my children. My back may not be able to lift, but heart can love. My body may not be able to play with my children, but my children can still learn love from their mother.

Chronic illness changes you. But it does NOT define you, unless you let it. Limits require modification, not cessation. Now, instead of refusing to do an activity if it can't be done the "old way" (read: without help), I use whatever tools are available to me and I do the task to the best of my ability that day. This meant swallowing my pride and using a motorized cart at the grocery in front of my 12 year old son the other day. But instead of being embarrassed, he was proud of me for trying my best!

WHO you are isn't defined by WHAT you can do. So be mad. Cry. Yell. Scream. But do not give up. Feel what you need to feel and know that it's ok to feel those things. But process and move on. Because the acceptance you find on the other side of grief will allow you to finally learn how to live again!

[salfnd]

Hi Thank you for sharing this, I have wrote a piece like this as i feel just the way you did or do, I havent been suffering as long as you,i was diagnosed two years ago but not sure how long i had symptoms before that.. I have Fibromyalgia as well, about 5 years now and i really struggled with that has taken so much away from me and I too was angry and i couldnt accept that i couldnt work no more or do half the things i use too, but now ive learnt my limits with both Disorders and I will carry on fighting for my own health my for others too..xx

[cshubert in reply to salfnd]

Fibromyalgia was the very first thing I was diagnosed with 8 years ago, so I literally feel your pain! Hugs!!

[0101 in reply to cshubert]

Yes, thank you for posting this. Hope gets a bit squashed sometimes but it's funny how it can be protected and stoked back up, especially with support from others. Can I ask - was there a definitive change in diagnosis? I seem to have collected some vague diagnoses every time I see another medic. In a sense I don't need a label for some things, but it can be easier to get my head around something if I know what it is. Then when different things overlap it can get confusing.

[cshubert in reply to 0101]

No, my diagnosises just get piled up on top of each other, mainly because I've lived in several different states throughout the diagnosis process. First it was Fibromyalgia, then Chronic Fatigue Syndrome was added, then Degenerative Disk Disease (plus several other back/neck issues, which has lead to 2 surgeries already), then Depression, then OCD Anxiety, and finally FND. They are still testing for possible MS issues, though it will take time for that process to be worked out.

The funny thing with the FND diagnosis is that the neurologist was the one who gave me the FND diagnosis. But my therapist (and psychyatrist), who I've been seeing for the last year and a half, both disagree with the FND diagnosis! At least from a psycosymatic standpoint anyway. My therapist is in her mid 50's (so it's not her first time around the block!) AND she has experianc treating Conversion Disorder. She said I am one of THE most efficiant emotionally processing clients she's ever had! By definiton, Conversion Disorder (what psyc calls FND) is the conversion of emotional trauma into physical symptoms. My therapist said that you only see Conversion Disorder in those who cannot or will not process emotions properly. Since I do not struggle with processing emotions, nor is there an emotional trauma centered around the onset of the FND symptoms, it does not make logical sense that my physical symptoms have an emotional basis. I have made tremendous emotional progress in the last year and a half, but my physical symptoms have continued to deteriorate. If my symptoms were emotionally based, then they should have gotten better, not worse.

That being said, my own neurologist admited that in the last year or 2 the requriements for an FND diagnosis have been updated to include physical triggers such as illness, injury, or reaction to medication. There were so many people being diagnosed with FND that did NOT have an emotional trauma trigger that the diagnostic criteria had to be changed. My own symptoms began 8 months after my Fibromyalgia diagnosis and started in response to a reaction to taking Neurontin (Gabapentin) and Tramadol together. Despite the fact that I explained this AND my therapist's belief that my symptoms are not emotionally based, the neurologist was hell bent on the idea that my FND IS emotionally based! Because of this, she essentially offered no help, save continuing to see the therapist. I do not have plans to see that neuro again!

So what do you do when the MD says "Go see a shrink; it's all in your head" and the shrink says "It's NOT in your head; go see an MD."?!?! That's when I decided I needed to just accept what IS and learn to deal with it day to day. Since no one really knows what I have or why I have it, they can't help me. So labels at this point are worthless. Now, I just do what I can to help myself!

[0101]

Thank you for such a detailed reply. It's strange so many have a similar experience.

Professionals disagreeing never helps. I'm fairly efficient at processing emotions too and was asked repeatedly a week back whether I was 'present' and 'in the room'.

I managed not to snap back that unfortunately I was aware and despite being annoyed, exhausted, confused and in pain, I was very much 'present'. I don't have dissociation. This unresolved emotions waffle is used as an excuse for 'I don't know' far too much. My meningitis and encephalitis etc are clear physical triggers that I'm annoyed at having to repeat to different medics. Diagnostic requirements are finally changing, with ME and CFS too and there's some promising research. I briefly ended up on a cocktail incl Gabapentin and Tramadol and it turned out had a neuroleptic reaction so I now have red wrist bands in hospital in case someone tries again! Glad you don't plan to see that neurologist again and I wish you all the best.

[cshubert in reply to 0101]

Really? What was your specific reaction to those two medicines? Mine caused uncontroled jerking and tremors. Sometimes they were so violent, it looked like I was having a seizure from the waist up. I ended up under observation of a neurologist in a hostpital for 3 days where the basically concluded that I was a hypocondriac. Once I stopped the medication, the major episodes resolved, but I still have uncontroled movements (dystonia of a type, I supose) and jerking/tremors that seem to worsen with bouts of Chronic Fatigue. After 7 years, my back doctor tried that medicine combo again (to treat my back pain) and my jerking episodes returned and quickly got much worse. He actually recently logged an allergy response to Gabapentin (with Myoclonic Jerking as the reaction) in my medical chart. That jerkinig is what sent me back to the neuro a year ago, where she labled me with FND. Given that we have a strong family history of Parkinson's on my mom's side of the family, any uncontrolable body movements are of major concern! I already have Essential Tremor and even that gets worse with these medications as well. I jerk like crazy even in my sleep...so if that's all in my head, I've got one powerful brain!

[cshubert in reply to cshubert]

And yes, I agree that doctors now days are very quick to slap a "functional" or "psycological" lable on things they don't see on a scan or in blood work. Why is it that we as patients have to be "crazy" just because you as a doctor can't "see" what's wrong???

[0101 in reply to cshubert]

To be honest it's blurry!

Only through a process of elimination could I or my current health team try to work out what it was and when you end up on a bunch of meds it's impossible to work out which it is or what's contraindicated. I ended up in an ambulance as a friend and parameds thought I'd had a stroke. I had waht seemed like fits. Vomited. Was in intense odd head pain, visual problems and had a migraine. Couldn't sit up properly. Hospital thought I had epilepsy or had a stroke. I woke up next day or so and had problems talking, walking, hearing and with bodily functions. I was weak and confused and was left with the side of the bed down, so ended up falling onto the floor. Blood pressure very low etc. It was very scary. A neurologist, locally well known for being rude to the point of insulting and shouting at colleagues and patients told me it was 'functional'. He shouted at me and told me I was wasting a bed. I contacted my aunt, a doctor in the hospital and that seemed to change the response! I was discharged into the care of my relatives, still slurring and unable to walk properly. This happened a few more times for best part of a year and with further hospital admissions with slurring and bodily functions failing. Only when I came off everything - the Gabapentin, Tramadol and proton pump inhibitors adn anti-nausea meds did serotonin/toxicity get mentioned. After another year I saw a superb gastroenterologist amongst other consultants who pieced a few things together and congratulated me from coming off the meds 'myself'. I'm very, very lucky.

Since meningitis and encephalitis I've had intermittent versions of medically unexplained/non-organic/functional/conversion and dismissal of any history I try to provide. Symptoms are leaped upon, then a new wonder drug is prescribed - often on top of contraindicated ones. I usually try to get out of the hospital and get someone to advocate for me at that point as it shows noone on shift is reading notes. It's tough though. I'm glad your doctor logged an allergy response. In the UK we can report ourselves - the yellow card scheme for just these types of cases.

Surprising your family histoy isn't taken into account - that's unecessary and must be worrying for you. You do have a powerful brain by the way - but that's a comment on your persistence and character!

I'm left with weakness and tremors, and walking problems, balance, fatigue and pain etc but minor compared to before and no major fits or similar for a while. Other things not connected to this.

Learning from others and staying positive, but acceptance, I am still working on.

x

[cshubert in reply to 0101]

Wow, I've wondered about Seratonin Toxicity myself! In my most recent bout, I was put on Zoloft first (for the depression/OCD), then Vyvanse (for the Chronic Fatigue), then Tramadol and Gabapentin (for the back pain). Everyone knew I was taking this combo, but every time I mentioned Seratonin Toxicity it was dismissed. I too weaned myself off everything but the Tramadol. And I try not to take it during the days/hours when I don't need it. But while I was weaning off everything, I came off the Tramadol for a time so I could personally asses what was causing which symptoms. It's rediculous how many doctors will NOT acknowledge the possibility that they may inadvertantnly be the cause of your symptoms due to overlapping drugs! Especially here in the States where Big Pharma is a BIG problem.

I can only assume at this point that whatever has caused my brain to go haywire has caused perminant damage due to the fact that the symptoms never fully go away, regardless of whether or not I've stopped the meds. That's why I do as much as I can FOR myself because the doctors and medcial staff either can't or won't take the time to truly help people like us!

[0101]

Keep at it! I don't know - please don't think I'm diagnosing you. It's frustrating though. I believe if you have any issue, physical/mental health or both, the right medications can really improve qualityof life and often be lifesavers. It saddens me the number of people with physical ailments overlooked due to mental health problems or learning disabilites. Or the assumption of these if there's no 'simple' answer.

I was put on Amantadine for a bit in one hospital stay, but it wasn't monitored and didn't seem to do much after about five months. My practice didn't know the clinical justification for it being started other than my reports of fatigue and mobility problams so we agreed I'd come off it. Not great feeling like a guinea pig.