I just had a ‘big’ birthday. It is a number I have been dreading for some time now. Alas, no matter how much we dread, time marches on. So I decided to embrace it and be glad that I am here, rejoice the 5th,6th and 10th times I heard , “Wow! You do not look anywhere near……” and help my poor husband who was attempting to throw me a small party. Paul had never been in charge of any such task in his entire life. My husband is an amazing follower, but an organizer of an event…… um, not so much. Hey, we can’t all be the “Chief’s”, right? I, however, being a woman and having four children (and lots of other experience organizing ‘events’) was happy to ‘guide’ him. I was actually excited about the party! We gathered pictures from my walk on this earth. My time does fly! I told him when each one was taken and what it represented. He carved my soon to be age out of Styrofoam board and we made a picture collage. I made a couple of CD’S, one of a few of my favorite EVPS I had captured since I started ‘investigating’ and one was the ‘soundtrack of my life’. It was fun. Other than a few people who could not make it being missed, it was a great and wonderful couple of hours. Just pure fun. But I was not prepared for the next three weeks and what it had in store for me. It started with a flare. We, with fibro, all have them. On my birthday it was my gut that got hit. And it hit for days. I had to take lots of ‘gut meds’ and I won’t elaborate but the gut situation went on for at least a week and a half and overlapped with the neck situation. I had two nerve blocks done on my actual birthday (bad booking on the Doctor Office’s part, too hard to change once booked because of the way they prescribe the medication). Now I still love this new Pain Management Doctor I am seeing. He listens. He respects and cares for me and his other patients. He *wants* to help. He is not there to just collect a paycheck. His office is not overflowing with people to rattle in and out like cattle. Nonetheless, something in my neck got irritated during this block and by about Monday (the day after the party), my right side was in spasm hell and I was hurting in the worst way. I would end up in the ER getting my usual ‘mix’ that does *not* include any narcotic meds (as to not break my pain contract in any way). In fact the first words out of my mouth are, “I am not here for narcotic medication.” By doing this, they take me seriously. I know what works, this particular PA agreed, and we went with that protocol (they have a fast track that allows you to see a Physician Assistant for Non “Super” Emergency).
So, I had the gut thing going on and then the overlap of the neck spasm / irritation from my nerve blocks. Of course I was getting very little to at some points no sleep and the sleep I was getting was sitting in the corner of my couch sitting up, curled in a ball. It got to the point where I had gone night after night and had not gotten into bed at all or maybe got on top of the covers with a blanket (could not see ‘unmaking’ the bed for just over an hour’s worth of sleep). If you are a ‘well person’ reading this: take note, because this is not just me, I represent what so many with fibro and chronic pain live with. We just want awareness.
After days and days of this I was not prepared for what I was about to encounter, the debilitating fatigue I would experience. It had been a long time since I had this sort of fatigue and even then it was just usually a day or two. However, this went on and on day after day. That is when I remembered, I did not just have Fibromyalgia, I have Chronic Fatigue Syndrome. I think I mentioned this in previous posts, but my official diagnosis is: Fibromyalgia Syndrome Chronic Fatigue Immune Deficiency Syndrome. That is a mouthful! That does not cover the tangible issues in both my neck and now my lower back (tangible being things that you can see on scans; things that you can point to and physically look at). These are added issues upon the fibro issues. This is easy to forget when your medications, your diet, your sleep patterns, etc are in a relatively good place and while you are not going to be on “Dancing with the Stars”… or would that be, “Dancing with the Average People”, you certainly can appreciate what ‘functioning at a low level of normalcy’ is and praise God for what a gift even that is!It persisted. Day after day. It was all I could do to get up, shower and do the bare minimum…. and doing the bare minimum meant doing it in five minute spurts. Of course then, depression sinks in. It is depressing to hurt all the time. It is depressing to be a “So Cal girl” living in a four season state and you *live* for the summer months only to have your summer be the cloudiest and rainiest that even the ‘old timers’ can “ever remember”. “Weird.”, they will way, “It has just been a weird summer.” I say more like sheer robbery. We were robbed of our summer. 🙁 Because of my ancestry I only need about 8 hours of sun to get a pretty decent tan. Eight hours of sun is about what I think I got this year. So you have pain, sheer, utter, indescribable fatigue and then depression. It goes on day after day until that turns into a week and then it is two weeks. Finally you start to question yourself; “Is there an end to this flare?” Or, “When do I reach for help or am I just being silly?” We with fibromyalgia and Chronic Fatigue Syndrome get doubted and told there is ‘nothing wrong’ or we are ‘making it up’ or even worse, ‘ we are attention seeking’ so much, we get to the point where we are afraid to ask for help. We also get labeled as ‘pill seekers’ which if well people would get educated they would know the DEA has become so malicious there are people in horrific pain that are actually committing suicide because the DEA have become zealots about pain and anxiety medications. There is a time in which one can swing too far in either direction. I have a friend who shall remain nameless. I have over 1,000 friends on Facebook about 80% of those are chronic pain warriors so my friend’s anonymous state should remain pretty safe. She/ he has three major pain inducing chronic illnesses. Three. I have one of the three they have and it is about all I can do to exist. This person told me the DEA in their state was starting to crack down and their Doctor was having to tighten their medications. I was speechless. With what this person has to fight on a daily basis; basically Fibromyalgia times three (only worse because one of the disorders attacks the tissues of the body), I do not understand how any agency can think they are doing ‘good’ by refusing someone in so, so, so much pain medications that keep them sane. I am not talking about someone who breaks their arm and gets hooked on Lortab here, I am talking about someone whose life is a living hell and the only way they make it through each day is medications that dull their pain enough to ‘deal’. I feel blessed because I have found a treatment plan that I think (fingers and toes crossed) is going to ‘work for me as well as anything can’ aka I will still hurt like hell but will manage. I finally have a Doctor that cares and ‘has a clue’ and my meds seem to be at the ‘sweetest spot’ they have been at in years. The bone in all this is, I just found out a lot of ‘not such good stuff’ about my lower back and of course as most know my neck aka C-Spine is basically wrecked. I would not go quite that far with my lumbar; it is not ‘wrecked’ but it is well on its way. Hey, there is always the Thoracic Spine… Oh, wait, T-1 has stenosis. Darn! In any event, to all ‘well’ people, while I am sure there are ‘pill seekers’, we in chronic pain are seeking some, any sort of relief, not a ‘high’. I can assure you that! I wish I could say there was some happy resolution to this fatigue episode. I am slowly getting back to the ‘normal fatigued me’. It does serve a purpose. When trying to explain to someone why I am disabled….. not that I have to explain to anyone….. this last three weeks is a perfect example. It has been all I could do to exist! I about had a fit when someone in my family apologized to me for ‘forgetting my birthday because they are in so much pain’…. yet this same person can go on vacation at least once a year to a place that is a good three hour airplane flight. My last vacation was my Honeymoon in 2005. I don’t even know what a vacation feels like anymore! If you forgot my birthday, I am a big girl, I will survive! Just tell me you forgot my birthday, but don’t start ‘one-upping me’ on pain because I guarantee you, I will win each time. I sent that person a detailed list of every single thing wrong with just my neck. Not the Fibromyalgia, not the latest diagnosis, my back which I am still learning what is wrong including a cyst that I am quite concerned about. I am not even telling anyone (except Paul) what is going on with my back, because I don’t know enough about this condition (except there are “Institutes” and “Clinics” that offer “Hope” and “Encouragement” for people with my lower lumbar condition; I do have, as suspected, a disc issue, but that would appear is the least of my worries). I did not get a response from this person. I really don’t care if someone forgets my birthday. I had so many well wishes, as hard as I tried, I was not even able to thank each one personally and issued a ‘mass thank you’. So plenty…. 100’s to be exact… remembered, so I am plenty blessed with people who remembered! Now how blessed is that? Awesome!
So, as I slowly get myself out of this tailspin of utter, immobilizing fatigue, if for no other reason, I need to be ready to hit the ground running when my Grandson decides to greet us at any moment, I wish I could give some brave, wonderful, wisdom filled words. I really cannot. I can say this: if finding yourself in this bad of a flare, rest, rest and rest some more. Eat well, pamper yourself. Bathe daily and get on fresh clothing…. nothing feels better than being freshly showered or bathed and having clean clothing on. Stay away from negative people. One Uppers; deflect what they are saying or just avoid them. I am at a critical time with faith/church. I am considering returning to my Catholic roots. I feel forgotten and deserted by my ‘new church’. My husband works 2+ jobs but still goes there to volunteer on camera. I have missed more Sundays than I have gone and it is not because I have wanted to miss going. The soul: willing, The body: well, you know. I won’t elaborate, but it was my understanding …. especially in this church…. they are supposed to ‘check on you’ if you don’t show up. Well I can assure you, no one has ‘checked on me’. So who has let me down here? People or God? In fact listening to the Gilbert O’Sullivan song “Alone Again, Naturally”, it was just the song I needed to hear. These lyrics especially:
Talk about God in His mercy
For if He really does exist
Why did He desert me
In my hour of need?….. and…
It seems to me that
There are more hearts
Broken in the world
That can’t be mended
What do we do? What do we do?
So for those of you who are having difficulties with fatigue. I feel your pain. This last three weeks has really jolted me back into the reality that I do not just have Fibromyalgia, I have Chronic Fatigue Syndrome, and that it is not a force I can reckon with. The best I can do is rest, eat right, drink a lot of (non soda) liquids, take my medications and vitamins and try to not push myself too hard. Oh and stress: avoid negative / toxic people and avoid as much stress as possible. Hey, I am saying what we are supposed to do to help things, I did not say it would be easy. 😉 Until next time, K. This post and song is dedicated to all my sisters and brothers with Fibromyalgia, CFS/ ME and Fibromyalgia Syndrome Chronic Fatigue Immune Deficiency Syndrome (my technical diagnosis) as well as all sisters and brothers of any chronic pain and / or connective tissue disorder. CARRY ON!
“But I like to think I can cheat it all
To make up for the times I’ve been cheated on.
And it’s nice to know when I was left for dead
I was found and now I don’t roam these streets,
I am not the ghost you are to me.” (“Carry On”) ~ FUN