My main reason for this post is I just talked to a dear friend of many years and we had a nice little chat about the affects Fibro has on our lives and the things we have lost through this journey. So, I wanted to share a little of that with whomever might be kind enough to read this.
Well, my last post did not generate any takers, so possibly this one might be of more interest to some. I am fairly certain that all of you out there can relate to most of what I have to say and if you haven’t experienced it yet, hold on because you almost certainly will!
Life as I knew it did a complete one-eighty from the time I was “normal” until I started having so many aches and pains. I quickly learned that my life was never going to be the same ever again. Life had tossed me this giant obstacle and I did not know how to handle it much understand it. That’s when I started to read everything about all my symptoms I could get my hands on and found that I was not alone.
Here is a list of what I normally go through on a regular basis/have had in the past and these are just the physical ones (will get into the emotional/psychological ones in a minute). See how many you can check off that apply to you:
2. Chronic pain
3. Hidradenitis Suppurativa, reverse acne of sorts, (very, very painful)
4. Osteoarthritis in both knees (only thing left is replacement)
5. Irritable Bowel Syndrome (IBS)
8. Restless Limb Syndrome (RLS)
9. Insomnia (better since I started taking Requip for RLS)
12. Pain in right hip from stress fracture
13. Lower back pain
14. Hot flashes
15. Overactive Bladder
17. Numbness and tingling
20. Unexplained nausea
22. Weight gain
23. Leukocytoclastic Vasculitis, a.k.a. Inflammation and tissue damage of blood vessel walls
24. Intolerance to alcohol
25. Thick mucus excretion (granted being a smoker doesn’t help with this)
26. Bursitis in both hips
27. Unexplained fevers
28. Excessive sleepiness during the day time, fall asleep often and at inappropriate times
29. Bells Palsy
Now here is the list of emotional/mental/psychological ones, the ones that can really destroy important aspects of your life………
2. Seasonal Affective Disorder (SAD)
6. Mood swings
7. Cognitive problems
8. Anger outbursts
10. Loss of friends
11. Loss of independence
12. Feeling bad that my life turned out this way, even when I know there are people out there who have it much worse than I do
13. Trying to convince people who judge me that maybe if they would educate themselves they would see that it is not “all in my head”
14. Fighting with Doctor’s to give me a pain medication to use only on days that it is unbearable and they won’t because of fear of addiction
Ok, I know there are more but my brain just doesn’t want to seem to delve them up right now. If you have any of these, please know you are not alone. They are all real and you are not going crazy! I have had people call me crazy, different, not who I used to be etc. They are right, I am far from the person I once was. I used to be very outgoing and fun to be around. Fibro changed all that. I cannot go out and do the things I once enjoyed, I cannot play with my granddaughters like a Nana of 47 years should be able to play with them, I cannot tolerate loud environments, I cannot just drop everything and go with friends when they call, I not longer am able to work since I would miss so many days that an employer couldn’t count on me to be reliable. Who I was before Fibro is far from who I am now.
I have gained over 80+ pounds, there are days that I do not feel up to taking a shower or even bothering to get dressed. I mean why get dressed when all I do is sit around my house because most days I do not feel well enough to do anything but lie around. There are days I do not want to talk on the phone, I do not want to cook, I was once a very good housekeeper, but not anymore. I have lost friends or pushed them away because they just don’t seem to get it. Or I feel like they think it is some kind of competition if they have Fibro also. I got tired of the, “Oh I feel worse than you, my pain is more than yours, my Mom has it worse than you”, always questioning me and my actions.
I get so sick of the implications that just because I don’t look sick, I am not sick. When did they (those who sit in judgement) get their medical license? You know they old saying, “I wouldn’t wish that on anyone.”, well I certainly would those folks for just one day! People like that are what I call ignorant simply because they choose to talk about something they have no clue about. I say I don’t let all that get to me, but I do. Just as each of you hide your pain and hurts, I do the same thing and sometimes talk a big talk. In reality, words can have a dramatic affect on anyone, I don’t care who they are.
I have determined that I will respond to nay sayers with the following comeback if they tell me I don’t look sick, I’m crazy, it’s all just made up for attention……..”Really, why thank you! Did you know you have hatefulness and ugliness radiating all around you? Oh and by the way, what you say to me does hurt but you know what…if I can survive fibro, I can certainly survive without you in my life. My self-worth means more to me than having someone like you in drag me down with negativity! Have a great day, I know I will now!”
We must support and encourage each other with or without Fibromyalgia and all that comes along with it! We are NEVER alone and we will survive! God bless each of you and may tomorrow be a wonderful day in your life!