Showing UP

“Thanks for inviting me to party/book club/dinner/lunch/event. I will try my best”

The response I usually get is “You have to come” or “Why wouldn’t you?”.  I wonder if people really want the truth. About 7 years ago I would not miss a thing, ever.  I do not nor have I never needed anything to loosen up, be ridiculous and have a blast. Not to say I did not partake in some things to enhance the experience. I just did not require it. So going out was always fun-pure fun. So why is it so hard to show up now?

A day in the life of someone living with relapsing MS and what it is like to show up……

After a sleepless nights sleep I lay there, usually on the couch it is the most comfortable. I lay there trying to assess the amount of pain and where it will be the worse. Maybe my back today which will make sitting up difficult and breathing impossible. Could be the throbbing cramps in my legs that will make it hard to swing them over to stand. Or possibly my feet and the pins and needles yet numbness making those first morning steps shear terror. Well time to get up make lunches, breakfast and get ready, here goes nothing.

Oh standing up from laying means I need to gain my balance first. I stumble and wince as I make my way to the bathroom then to the kitchen.Every step is hard and I fight to show the kids what pain I am in but they are not fooled.  I grasp the walls because my brain is not telling my feet to move and I am looking like a drunken sailor. I have stumbled and almost fallen twice already. I heat my fishbellie (corn bag) and place the hot bag on my feet or leg or back. AHHHH that is perfect. Coffee, a little snack then 11 different pills and vitamins for breakfast. I say goodbye to my humans and then the nausea sets in from the meds. It is so bad I have to use some CBD to try to gain balance. With the pain that feels like my muscles are not there, the nausea and my “dead leg” I get on the treadmill. Yes the treadmill. If it is a good day I am a speed walker, a great day I run but this day I walk slow with no incline and grasping the rails. Why you ask? Because no exercise means stiff joints and even more pain. After thirty minutes I am done. Seven years ago I worked out for 2 hours a day, this wrecks me to think. The mental part of a chronic illness sometimes out weighs the physical.

I get ready for the day, shower and log on to work. Here is where I am lucky. I do not have to go to an office. My work is virtual, my meetings could be done in my pjs sometimes with no pants. Thank you Wisdo for that. It still is mentally exhausting, brain fog sets in as the day progresses. Some of my meds take effect by making uncontrollably tired at 2pm. I fight to stay awake but realize I must sleep for even 15 minutes. Kids arrive home and I can not move,my body is mad at me everything hurts especially my side radiating to my back. Hurts to sit, to stand, to be. I push myself to make dinner, kids clean up I can not stand another minute. But first I take those 11 pills again. The white one burns as it goes does no matter how much water I take and the after taste is like death. This is my reality.

I was invited to that “thing” and now I must decide can I handle it? Loud crowds can stress my thinking out. My eyesight is terrible so night driving can be difficult. Every single step is excruciating. If I sit the pressure from my back is so painful it burns, if I stand my pins and needles are worse. But maybe my mood will lift so I go. I take myself and go. I laugh with everyone, cracks some jokes and smile. Oh shit sorry I cannot have a glass of wine my medication says no alcohol. I get asked “may just one”, no even one can causes damage. I get the look, the don’t be so dramatic look. If only. I have been here only an hour but the pain in my back is intense and I can not walk.I am both sad and embarrassed. I say goodbye and people wonder why I am leaving. I get asked “Isn’t there something I could take?”, if there was a magic pill I would. Trust me showing up was hard walking out is harder. I feel like a failure. My body has failed me.

Some days I say no, I just can not. Some days I do not show up, Some days the cramps in my legs are crippling. Some days I can not move my hands.Some days I can not think and forming words is impossible. Some days walking is more work than I ever thoughts. Some days I just can not keep that tiara on.

But some days I just show up.

Your body your mind

There is this saying “your body listens to your mind careful what you say”. The issue is when you had an illness like cancer your body says a lot. What should you listen to and what should you ignore? Who do we call and will they listen? These are real questions and concerns we have. I have found myself not telling what is going on because I do not want to seem like a hypochondriac, plus that look. You know the “omg is she for real?” look. I have for the past 3 years try to deal with a lot of my health issues on my own, mostly because I do not want to seem like I am crying wolf. The truth is I am in pain, constant pain. When I write it all out I think “what the hell is wrong with this person?”. I have told my neuro some, a little to my gastro, some to my oncologist, a little to my breast care doc and a lot to my GP but I held most in. Plus you see where I am coming from-which doctor and how much? Not to mention no one had an answer.

Recently I could not take any more “false positive” results, what does that even mean? The “there is something there, we just do not know what” comments were too much. I was sick of the pain with no explanation. So I sought out a new doctor that looked at everything. Heidi Puc is an integrated doctor. Now chill let’s look at the word integrated, it means combining allopathic and complementary therapies. I needed a change and she was it. I sat with her for 2 hours and she combed my case and listened to me. I mean listened to every ache, pain, twitch and tingle. I am curious why more doctors do not do that. She even had about 50 symptoms to ask me about. I feel like I am getting the answers.

Fear-that is a huge issue. We are so scared to get an answer or a DX we do not go. The anxiety and stress of knowing all too well how an illness can change you is mounding. The truth is the unknown is just as scary if not worse. It is time to take that fear and say  “bite me”. We can run from fear or run through it. While I am not a runner I am sick of letting fear consume me.

I am being tested and scanned like a mission in the task force. I am slowly getting answers. What is my point here’? Stop being worried about what the doctor may think or how you may look. Talk to your physician, if you can not fire them and get another. The aftermath of cancer or any illness of that severity is extreme we need to be our own advocate. Now I am not telling you to go to the doctor for every sniffle or hangnail. However issues that are persistent or nagging need attention, go I urge you go.

So while my doctors all listen to me and try to find the source of my pain I will try different meds to help. I will get blood draws and scans. But I will not be quiet any more. This is my body and I am tired of living in fear of it. Someone grab my tiara, I ready to face it head one!

No tiara today

I couldn't get out of bed today but I did. I couldn’t walk on the treadmill but I did. Not because I wanted to but because I needed to push as much as I could.  I did however get in the shower but I could not get dressed without tears of pain. Screaming for my husband to help me my body was frozen in such pain, legs numb and tingling, eyes blurred and hurting. It took thought to make my legs move, it was like my brain was not reaching them. He helped me to the couch slowly each step so excruciating my tears were uncontrollable. His eyes filled up with tears and fear. He gently helps me to the couch wincing as he does- scared he will make it worse. I lay there not because I am lazy but because I can not do anything else. I moved slow throughout the day each step hurts as my foot hits the floor, I can not feel it but the pins and needles remind me it is there. My face tingles to my lips causing me to feel like I am going mad, maybe today I am. The right side is not only numb but tingling so much. My right eye is blurry and aching, I am having floaters all day. The spasms in my leg jerk my body which makes my back pain sting. By the end of the day I am dragging my right leg and needing assistance walking even ten steps. I notice my clothes are on inside out but at least I am dressed. The kids make dinner and the worry sets in their faces. When mom can't cook she is hurting in a way that scares them.

I work pushing through the pain. Laughing and trying to stay focused yet each breath is a reminder of the hurt while my legs are numb no matter how I sit. Work, pain repeat until I can not take it any more. I must sleep, laying down finding a spot that is not too awful I crash hard to the sound of kids playing, lawn mowers, birds things that usually keep me awake. Not today the pain, numbness, the tingling is overwhelming.  My eye aching and the blurred vision was too much to take today.  Is this how summer is supposed to be, where is my tan? Pain is exhausting, real exhaustion. I was a true spoonie today!

Just because I do not look sick does not mean anything. The pain is so real and intense I wonder why others can not see it. This is not a pity party, this is not searching for sympathy. This is nothing more than the reality of a relapse with MS. This is a day that I may seem fine on the outside yet inside my body it twisted in pain. Today there was no tiara.