Fibro

Yet, chronic pain and chronic illnesses are often invisible. In many cases there are no casts, visible rashes or runny nose involved.

Chronic pain sufferers often appear “normal,” perhaps only a bit more fragile or sad than average.

I suffered from chronic headaches for four-and-a-half years and from chronic hip pain for two-and-a-half years.

Often I looked depressed, uninterested and angry, when I was simply in pain.

There were many days I couldn’t get out of bed. Following a conversation became difficult at times.

I lost a job due to my pain. I canceled plans and ignored friends.

I felt misunderstood and alone. I was suffering. I know the answer was out there and eventually I healed myself.

Yet at the time I wanted to scream from the top of my lungs all the things all chronic pain sufferers want you to know:

1. Just because you can’t see it, it doesn’t mean I am not in pain.

2. It’s not all in my head.

3. It is not just the flu. It won’t just go away in a week.

4. Please, don’t ever say, “Just don’t think about it.” Being in constant pain this is impossible.

5. Hugs can do magic. So are nice messages. I need to know you are here for me.

6. Thank you for sharing the “magical cure” that you’ve read about online. Trust me, I’ve heard about it, and if it was any relevant, I have tried it.

7. I am trying extremely hard to live a normal life.

8. I try my darn best not to cancel plans and I would never cancel plans, if I had a choice.

9. I can’t just snap out of it.

10. Some days are better, some days are worse. Some days I may even feel close to normal, other days I can’t even get out of bed.

11. I do care about you. I want to know about your life and dreams. I want you to be happy and healthy.

12. My chronic pain is different from the other people’s chronic pain. All illnesses and pain symptoms are unique. Our experiences may differ, but we are all in pain and can relate to one another.

13. Please, don’t try to convince me to have drink and to “live a little.” All I want is to live a little—actually, to live a lot. A drink, however, is the last thing on my mind.

14. If I look all depressed or bored, it means I am actually in tremendous pain and trying my best to appear to be happy and normal.

15. I can’t really explain how chronic pain feels. Yet, I can’t say, “You will know once you have it” because I would never ever want anyone to feel so much suffering.

16. I need a lot of sleep. But sleeping can be difficult with so much pain and often still leaves me exhausted.

17. Just because I have chronic pain it doesn’t mean that I know how to manage it or to live with it.

18. Sometimes it feels like I am in a prison, living someone else’s life.

19. I still have interests, passions, goals and dreams.

20. I don’t want you to forget about me. I don’t want you to give up on me.

21. I haven’t given up on healing yet. Deep inside I know there is (or will be) an answer out there.

CFS

. It’s not about being tired.

Yes, I’m tired. However, someone with CFS can be so fatigued it can feel like you have run a marathon with the flu. And that’s on a good day. It’s a type of tiredness that is beyond what you could start to articulate. This complex disease can affect all parts of your life and many bodily systems. A cognitive brain fog clouds your thinking, nausea doubles you over day in and day out, joint and muscle pain throbs and burns and you can’t move, the constant flu-like state, the dizziness when you try to stand and the respiratory distress from when your body is so exhausted that the simple task of breathing becomes a labored affair.

Unfortunately, it’s not a case of getting more sleep. I could have a lovely 12 hours of sleep at night and wake up feeling like I have been hit by a truck. Or I could be kept awake by pain or insomnia all night and function no differently the next day. Sometimes I wish I was simply tired.

2. What you see is not what it appears to be.

CFS is an invisible illness. Looking good doesn’t equal feeling good. I often wish people would see past the well-presented, mostly articulate and smiling woman in front of them. Even close family and friends haven’t seen the full extent of this disease on my life, especially when my symptoms flare in full force. You won’t see me out of the house when this is the case.

If, however, I have enough energy to go out on a certain day, I will factor in the energy required for everything from dressing well to putting makeup on to cover the bags under my eyes.

What you won’t see is the five minutes I sat on the floor of the shower when standing in the heat got too much. The three times I had to lay down to rest before leaving the house. The pain throbbing through my body as I moved, and the headache pounding right behind my eyes as I tried to keep up with the conversation around me. You won’t see the rest of the afternoon I spent in bed after being out of the house for just an hour.

3. The battle takes place every day.

With a fatigue-based disease such as CFS, a person only has a certain pool of cognitive, physical and emotional energy that can be accessed each day. Most days, I hope this energy reservoir will extend to having a shower, dressing and eating. But some days it won’t. I have long since outsourced my shopping, cleaning, washing and the majority of my cooking. Some days I run out of energy to eat. Other days I can get out and have a coffee with a friend. Then there is the countless medical appointments that need to be endured.

It’s about finding balance, making choices about what I will use my energy on and then dealing with the consequences if I use up too much energy. If I use too much energy, the delayed fatigue will kick in, my body will crash and I will be unable to do anything besides lying in bed for many hours or days. Unfortunately, there are unexpected curve balls, and the carefully balanced week or day gets thrown out the window. Instead, you’re left trying to make your energy ends meet while rapidly trying to steal energy for the days ahead.

4. It’s expensive.

I’m not just talking about the financial strain of medical bills, medication, supplements, specific diet and being too unwell to work. I’m talking about the huge cost on the rest of your life. It can take a toll it on your career or dreams, as others around you get the promotion you always wanted or get married while you find it difficult just to make it out of bed each day.

Then there’s the cost of not being able to care for children, spouses, family and friends. Not being able to be physically present to witness special moments in the lives of those close to you. The strain on relationships when you feel you just need to keep taking and not being able to give in return. Friendships drift apart since you have to keep turning down invites. Soon, they stop asking altogether.

Lastly, there’s the cost on your self-esteem, as the once fit and healthy body gains weight, reacts to medication and may only be able to walk as far as the mailbox each day.

5. You can’t do it alone.

You can’t survive chronic fatigue syndrome alone. It’s lonely, it’s isolating and it’s a battle each and every day. People don’t buy you flowers when you have a chronic illness, and people can get sick of hearing about a disease that continues to affect your life day in and day out. You need people on your side. People who are willing to be in there for the long haul. You need supportive friends and family who are happy doing your washing, who will still drop meals off three years into your illness, who give you lifts and sit on the couch eating tasteless, cheeseless gluten-free pizza with you. You need text messages and prayers. You need friends reminding you of your hope. You need people who look past your “I’m fine” responses and see the truth. You need medical professionals who are willing to fight alongside you, never doubting the disease and it’s huge impact on your life.

Oct. 1 2015

stayed home and slept all day

pain level is about a  7

Sept. 29--2015

I have not posted in a while because symptoms were not changing except pain levels.

Dr. Lenox has taken me off my Premarin and Naprosyn

Of course now I am aching a bit more

I also fell 2 two weeks ago and still am suffering the aftereffects

bruises and bumps and my head hurts from hitting the door

I am going to start putting a pain level here to keep track.

1-12-15

woke up off and on last night in pain

now i am tired and getting ready to go to work

and i have cafeteria duty this week  :(

1-5-15

PAIN

The past two days the pain in the am is KILLING me. I hate to up my dosages but it hurts to walk. Today school begins and I cannot go around moaning in pain all day.  

1-3-15

I have not updated in a while with symptoms because they have not gotten any better. The doctor has put me on 5000 mg of Vitamin D a day and some pain meds that allow me to still work. The stress of the job is bad. I am so tired by Wed. evening---it is all i can do go on Thurs. and Fri.  I want to finish out my years of teaching without going for disability. I get so angry with others who are not sick that take disability just so that they don't have to work anymore. I am hoping to pay off the house before i retire so that will one less big expense.