Dear Fibromyalgia, I Hate You

Dear Fibromyalgia,
          
                              As I begin this letter I want to find something positive to include, but you have made this a very challenging task. My life as I knew it is gone. You have taken so much from me, I don't even know where to begin. Fibromyalgia, I hate you.

                  I used to be able to work all day long. Sure I might be tired at night, but it was a good tired. The tired you get from working hard and getting a large amount accomplished. Now I find I am tired from washing the dishes. There are nights that after I have cooked dinner I am too tired to even do the dishes. I feel like a complete failure at times. I see things that need done or I would like to do, but I don't have the energy to do them. I have to depend on someone else to do the things I used to be able to do. I hate this feeling.

               Let's talk about the pain you cause me each day and night. I hurt all over every day all day. There is never a time I can say "gee, I am not hurting right now." My skin usually feels like I have a sunburn all over my body. Sometimes it feels like it's burnt from the inside. I get burning pains down the sides of my legs all the way down to my little toes. My hands throb and ache. I sometimes wonder how I will accomplish anything with the pain I feel.

               From the time I get up in the morning to the times I am tossing and turning at night, I long for a relaxing sleep. I am always tired. I feel like someone is constantly sucking the energy from my body. I find myself falling asleep at my desk while trying to finish a blog post. But, at night when everyone else drifts off to dreamland I am stuck laying there wide awake. I toss and turn and fall asleep for fifteen minutes here and there.  This cycle repeats night after night. When it's time to finally get up in the morning my body yells NO! I want you to lay here and finally get some sleep. Well, still only fifteen minutes at a time, but I will fall asleep very quickly. I struggle to pull myself out of bed. Getting dressed shouldn't seem like a challenging chore. 

               I used to do in home private health care for others and now there are days I think I might need someone to care for me. I see the stares people throw at me when I mention that I have Fibromyalgia. They look at me like I am lazy and using an excuse. They don't take me seriously when I tell about my pain so I just say I am OK when asked. I will never understand how someone could think we want to have Fibromyalgia. How could someone think I want to spend each day in pain? They actually think you are a welcome addition to my life. Well guess what Fibromyalgia, I hate you. 

As I conclude this letter, I have found something positive from having you in my life. I am stronger and will get stronger each day I overcome you. Each task I complete on my own and each day I continue to get out of bed, I am getting stronger. I may not always be winning the battle you have challenged me too, but I promise you this. I will never give up.


                                                                            Sincerely,
                                                              Tired, but NOT Through Fighting

3 Things You Should Never say to Someone with Fibromyalgia

I am sure there are plenty more than three that could be added to this list, but I am going to focus on the major ones. Feel free to add yours to the comments.

1) Oh, Fibromyalgia is the new made up diagnosis for adults, like Autism is for kids. Seriously, I have heard this said. First off, Autism is very real. I am the parent to a child with Autism. And secondly, Fibromyalgia is not some made up diagnosis. It is very real. Just ask any of the millions that suffer from it daily. Are there doctors that over-diagnose these two conditions, sure. But, they are as real as the air you are breathing. Never make light of anyone's illness. You have no idea what that person is going through in their life. Be supportive or be quiet.

2) You can get over Fibromyalgia if your really wanted. What, did that really just come out of someone's mouth. Sure, I will wave my magic wand and my Fibromyalgia will be gone. Maybe there is a spray that gets rid of it, "Fibro-Be-Gone."

I do not know one single person that would choose to have Fibromyalgia. Who would want to hurt day after day? Who would want to have to keep canceling plans because they are too tired and sore to get dressed? I don't know about you, but I sure wish I didn't have to take these medications that have nasty side effects. Take my advice, don't ever say this to someone with Fibromyalgia. Depending on their day and pain level you may end up with a well deserved fat lip. Would you say something like this to a person with diabetes or high blood pressure?

3) You look great, how can you really be so sick? I bet we have all heard this several times. I am not sure how a sick person is suppose to look. Maybe if I had missing limbs or open wounds, I would "look" sick? There are so many hidden illness that you cannot see. You should never assume anything about a person. You cannot feel what is happening with their body. You can't feel the burning pain Fibromyalgia sufferers feel. You cannot understand the way a simple task like washing the dishes can completely wipe out their energy. You won't be able to understand the way a light touch can set someone with Fibromyalgia into a tail spin of pain. Not everyone who is sick looks like they are death warmed over. We get very good at hiding our condition from others to avoid judgement.

I hope you will think before you speak to someone who says they have Fibromyalgia. There could be a day when you are in the same shoes as they are. Would you want someone to be so ignorant towards you? Do your research and be supportive. You may need that support someday.

What is the craziest things you have heard about your Fibromyalgia?

Lies we Tell Others About Our Chronic Pain

Anyone dealing with chronic pain knows all to well the look we get when we tell people how we really feel. They pretend like they care, but you can tell from the glare, that they are thinking here she goes again. What a whiner. It's even better when they tell you how they feel. "Oh, I have felt like that before.You have to do more and you'll feel better." Depending on how rude they feel like being, they may even say, you are faking or lazy. So we come up with lies we tell others so we can avoid looking like a whiner.

Lie 1. How are you feeling today? Oh, I feel great. Or, the biggest lie, I am fine. Anyone dealing with chronic pain is never fine. They always have some sort of ache or throbbing pain. It might not be as bad as it could be, but it is still there.

Lie 2. Oh, sure I would like to meet you for shopping, party, dinner, etc. When really all we want to do is crawl back into bed and hide under the covers. Now don't get me wrong, we would like to do these things. It just hurts to bad to do them, and we know how we will pay later.

Lie 3. I can do that. This could be anything from errands for someone else to babysitting their children. In all reality, we can't do that. We can barely do our own errands and keep our own children fed and dressed, but to avoid looking like a whiner we except. It doesn't matter that we will hurt for days after, we don't want to see that disappointing glare from others.

Lie 4. I don't need help. If someone asks if we need help doing a task like housework, we say no. This is due to the guilt we feel from not being able to do these tasks ourselves. When it is too hard to run the vacuum, it leaves us feeling terrible. We will do more than we should so we don't feel guilty. We don't want to think that others are saying, or thinking, we are lazy. We over due it and then suffer the next few days or even weeks depending on the task.

Life would be so much easier if people could just understand what we are going through. If we could switch places for a day, they would never question when we say we are hurting. We would never get another glare questioning if we are faking. We would never be accused of being a whiner. We wouldn't have to tell others or ourselves these lies.

Need some therapy: Visit the beach

      I have only been to the beach two times in my life, but I have to tell you they were the most relaxing times I have ever had. There is something about sitting at the beach staring at the ocean that is therapeutic. The everyday pains I have seemed to just disappear while sitting in the sand.

    Staring at the water that goes on and on allowed me to clear my head. My brain was only focused on one thing. The constant chaos that goes on in my head was silent. I was able to think clear thoughts. I didn't have fifty things rushing through my mind at one time.

 While looking at the ocean's waves I didn't focus on how bad my legs were hurting. I just felt at peace. I hope within the next few years to move close to the beach so I can visit weekly if not daily. If you find yourself having a bad day or a painful day stop and try to picture the ocean. Try to remember what the waves sound like as they crash upon the shore. Feel the water running over your feet and the warmth of the sand.

                   I know it will not be the same as actually being there, but you would be surprised at how it can help the body relax. Often at night I will go back to the beach in my mind as a way of trying to shut down for the night. I soon find my self drifting off even if just for a few minutes.

Brr, it's freezing outside

Usually I enjoy the cold to some extent. I like seeing a fresh blanket of snow on the ground. I enjoy the yard not being a swamp when I am taking the dog out for a walk. However, this year the cold is driving me nuts. My internal thermostat is already bonkers and the cold weather is making it go haywire. My bones are so stiff and hurting so much  that I can't hardly stand going outside. I don't know how I am going to make it through the winter.

Maybe I need to move somewhere that's warm all year long. If it were only that easy. I have a ninety five year old grandmother to care for. Moving is out of the question. If only I could go outside in a bubble that remained a constant temperature. My body takes so long to get warm after I am cold. I am only outside for ten minutes at a time max, just long enough to walk the dog.

How do you handle the cold weather when dealing with chronic pain? My hands are still aching and it's been an hour since I was last outside.  Ugh! I need to live on a beach.