For me, barely a day goes by that I don't think or ponder ways to explain what we feel and what this frustrating debilitating illness is really like. I find that I have become more and more silent as time goes by because I feel that it all just sounds like whining and complaining. It seems almost impossible that anyone could suffer the myriad of issues that we do and not be dying or at least headed in that direction.
Recently my Hubby has had a bad bout of osteoarthritis in his knee and he is on his feet at work all day so it has been no small problem for him. While thinking about that this morning it hit me that maybe he could understood, while he is in pain, a simple explanation of what this is like. I think we all have wished that in some magical way we could place a hand on a loved one and just for a few minutes they could feel what we feel. I wouldn't take long to make quite an impression.
Since that isn't possible - I saw an opportunity to help him envision it. Here is my description and keep in mind that each and every one of us is very different and our symptoms and daily issues differ greatly. This is just my example and you could easily fill in the blanks personally.
So -here goes. Well you have this pain in your knee from osteoarthritis and I completely understand that it is debilitating and makes it difficult to stand, sit or sleep. Very frustrating. While that knee is throbbing, add to that a dull headache that you have most of the time - sometimes worse but fairly constant. Along with the knee and the head, both of your shoulders have pain in the trigger points along with osteo pain, one of your hips has joined in with a dull ache and at times sciatica runs down that leg and into your foot; add to these elbows that throb on and off - not entirely sure if osteo or fibro are to blame for these; you have a bad disc (as do many of us) in your neck at C6 & C7 and from that you have shooting pains, popping, cracking and bone on bone pain most of the time with difficulty finding comfort or sleeping; just to keep the others company the L4 & L5 pain throbs while sitting or bending and the excessive bone growth at the end of your spine causes continual pain and issues sitting or every time you move. Still with me..... Both feet scream as well and the left is especially troublesome and pops and cracks with pain with every movement; your hands are riddled with pain 24-7 from osteo and Dupytren's Contracture which is slowly causing them to curl and become claws. You itch with stinging itching all over your body - sometimes faint and at other times to the level of a bee sting and no scratching will alleviate the pain. Much of the time you are a bit dizzy and unsteady on your feet, easily sweat and or cold much of the time. Add to all of this mental confusion and clarity issues, word finding problems and just plain trouble with conversation. Nausea is the norm and most of the time you must go to great lengths to deal with the A to Z issues with your stomach. Most of the time there is a continual buzzing, ringing and other noise going on in your ears. Much of the time you will have bloating and urinary urgency.
Okay I have hit the highlights here and by no means is this completely inclusive of everything we experience. This is not a scenario we go through every now and then - this is our daily life. I hope this does not come off as whining because this is surely not my intention. If you could see all of this going on inside our bodies it would be, in my mind, a constant nerve ending flare and misfire back to the brain.
I know each and every one of you have other symptoms - things you live with on a daily basis that you can add to this list. I hope this is a helpful start on looking at how we live. Every day, I am just so thankful that I get out of my bed and put one foot in front of the other.