Sometimes I think I'm a normal person, but then I try to move my body and I discover that it doesn't move like it used to. I know that age and additional weight change things, but it's more than that. You see, my name is Petula... and I suffer from invisible illnesses.
If you've been around before you know that I fight multiple myeloma, fibromyalgia and Sjogren's syndrome. If you're new then I hope you'll read some of my backstory. I used to be a normal person more than 20 years ago, but right after I had to have emergency surgery to remove my gall bladder in December 1994 things went haywire in the health department.
A month after my surgery I was told I have multiple myeloma.
Just a glance in my direction shows no signs of what my body is going through. When you ask me in passing "How are you?" I say I'm fine, but I really want to say, "Well, ya know, my joints are throbbing, my hips are killing me and giving out every few steps, I can feel the bones of my feet when I walk, my mouth and eyes are so dry that sometimes I can't see well and I don't want to talk, my lower back and my hips have decided that my newfound pleasure in sitting upright is over. Yup, I'm back to mostly reclining regardless of what I'm doing."
But who wants to hear all of that? On the outside I'm saying, "Fine, how are you?" And on the inside I'm screaming... that's my fight.
Most recently, I've been limping a little due to the pain in my hips, but once I manage a steady gait it usually eases up a little as long as I don't walk too quickly or take large steps. Since I've been in more pain than usual I think it's the maintenance chemotherapy that's messing with my system. Yes, I just endured a bone marrow transplant in December, but with multiple myeloma the standard procedure is maintenance therapy to keep the disease at bay. Most MM patients have some type of chemo for maintenance therapy, but truthfully, depending on your genetics, you may not need it or you'll just need a very small dose.
According to my oncologist, my genetics test shows I have a propensity toward the disease and she was adamant about the need for maintenance therapy. Of course, I could have declined it, but I'm going to see how it works out. When I first the maintenance with Revlimid it made my stomach hurt and I was just feeling horrible in general. I'd been on that chemo before and I don't recall feeling that way.
Now I'm on Velcade and it doesn't make my stomach hurt, but it does have me in a lot of pain and pretty darn tired. I often have to stop in the middle of something I'm typing and take a power nap because my eyes won't stay open any longer. I try to let my body do what it needs to do, but there are a lot of times when I need to get something done without fighting sleep and pain. ... That's my fight.
Taking on life when I'm in pain takes quiet of bit of patience... with myself. It's frustrating to be in so much pain that enjoying a three-hour trip in Walmart isn't enjoyable. If you haven't done the Walmart field trip I'm surprised. There are sometimes when you can go into Walmart and come back out rather quickly, but there are other times when you go into to pick up a couple things - on a very unplanned trip - and you walk around looking at everything. You know, browsing each department.
I do that with my three younger children, with my oldest daughter and sometimes with all of us including my granddaughter. A long trip with the grand isn't always as enjoyable ... I'm sure you can figure out why. :-)
There's one thing that really bugs me on a regular basis, but it's something I normally keep to myself. After the frequent treatments, the hair falling out, the transplants and weekly doctor's appointments things slow down a bit. And that's a good thing. The things that slow down that I still need and want are the calls, emails, texts, Facebook messages of people checking on me. It's only when the CANCER (read with big booming, echoing voice) is at the forefront that I feel and see the support. Otherwise, I deal with this alone. ... I fight daily...
My oldest daughter Amber is nearby and will come when she can and help when needed, but life goes on for her. She spent more than a year taking care of me and looking after me the best she could and now her scedule doesn't permit the frequency. So I do the best I can. ... I keep fighting to enjoy the time with my children; to spend time with my granddaughter.
I'm trying to find the balance between the person that feels a lot better than she felt on treatment and before the stem cell transplant and the person who is suffering with chronic pain and other symptoms of invisible illnesseses. I looking deep within myself for her. She's hard to find because she only feels the pain in her hands and wrists while she types and when she's sitting still. She feel the neuropathy in her wrists and her ankles and feet. Her thighs, lower back and hips ache and throb, and sitting upright causes more pain that she always has to ignore. I keep fighting to sit upright to write... to make money.
She just wants to be... well, I... I just want to feel rested. I want to have a day where there isn't any pain. It would be nice to have a day where I'm not tracking my symptoms in anticipation of my next doctor's visit. I want to be able to lift the box that weighs more than 20 pounds without hurting myself or being frustrated because I can't do it. I fight to follow doctor's orders.
I'll speak for all sufferers right now from the ones who are holding down jobs to those who are bedridden and everyone in between. We want people to brings us meal occassionally. We need that. We also need laundry done sometime, rides to the store even when we have a car, help unloading and loading groceries and someone to wash dishes sometimes. We don't want to hear, "Just let me know if you need anything" because we remember telling you the things we need. We want our support systems - or support person - to do the research like we have about our disorders and discover the things that will help us. The little things that make life a little easier. We want someone to care enough to do those things. For as long as we're sufferers will be as long as we need help. But the fight goes on to do everything without help.
That's why National Invisible Illness Awareness Week is so important; this year the dates are September 29th to October 4th. To bring awareness about invisible illnesses and this year it's about sharing how we each fight. What better way to understand what we're going through, what we deal with, than to read about someone's fight.