Amy Pilkington
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Amy Pilkington

Everything must go: Sharing my secret

Photo by Nadine Shaabana on Unsplash

I don’t even know where to start. Most people start at the beginning, but that seems like so long ago and my mind is a jumbled mess. All I know is I need to purge some of this in my head.

Everything must go.

Photo by Emily Morter on Unsplash

I’ve spent more than a year hiding things from the rest of the world, and I’ve spent much longer than that making excuses and living in denial. It’s not easy getting all this off my chest after all this time, but it’s necessary. I’ve been telling all of you one massive lie, and it’s time I come clean. What lie? This one:

“I’m fine.”

No. No, I’m not. I thought I would be, but that hasn’t happened. I’m confused, disappointed, and feeling defeated.

For those of you who haven’t seen me in a while and those who aren’t ‘in the know,’ you’re about to learn a lot. Buckle up.

Pardon me if this ends up being word salad at times. Forgive me if it’s a big jumbled mess. Please excuse any rambling. There’s a reason why I haven’t been writing. Words get confused. Things gets mixed up. If this ends up a huge mess, I apologize. I just have to get some of this out so I can clear my mind a bit.

Photo by Paweł Czerwiński on Unsplash

I don’t even know where to start. Really. I don’t. Maybe I can just throw some things out there and things will start to come together. Spring 2016. I guess that’s a good place to start. We went on vacation and I was miserable. My shoulder was giving me fits, and there were times where my arm was just useless. Absolutely useless. After dealing with nerve pain in that shoulder a few years, it was time to do something. My doc put me on a low dose of gabapentin. It was a miracle. I seriously had no more pain in my shoulder. It was that way for over a year. Even after that, I only had minor pain maybe two or three times a year. It was amazing.

I’m going to just ramble off some things between that time and now.

I broke my foot in November 2016. I’m not a spring chicken. I’m not in denial about my age. I assumed after being down for a while that the issues I had were just a slow recovery because of my age. I had days where it felt like the muscles in my right calf were going to rip. They were extremely tight. It felt like I had pulled every muscle below my knees. I just kept plugging away, thinking it was normal recovery. When we went on vacation in summer 2017, I knew I was going to have problems. I just knew. I knew I would be okay the first day, and I would be miserable after that. I was. Thankfully, I had taken a cane with me. I ended up using a cane after the first day. I was miserable. I felt like I was going to rip every muscle in my right leg.

After a little while, I figured out I had one or two days of walking and then I would need a few days to recover. I sat for days before my daughter’s wedding because I didn’t want anyone to see me struggling. I spent the next week recovering from that one day. I just kept telling myself I was still recovering from being down with a broken foot.

Fast forward to summer 2018. I decided I didn’t need to take a cane on vacation. I decided I had recovered enough to make it on my own. I was wrong. I spent almost an entire day in bed while on vacation. My legs started feeling heavy, and I had to stop often to rest. I made it, but I was struggling. Really struggling. I kept trudging along, but I was in pain. When we came home, I sat for days. I hurt too much to do anything else.

Photo by Tim Mossholder on Unsplash

In fall 2018 I started having issues with both legs. My feet and legs were burning at times and numb at others. Sometimes it was a weird combination of both burning and numbness. They both felt heavy, and I had started losing my balance. In October, I finally mentioned it to my doctor. With the burning and numbness, she assumed nerve pain. That’s what gabapentin treats, so we doubled the dose. It was still a low dose, but it was double what I was taking.

She tested for diabetes thinking it was diabetic neuropathy. Nope.

She tested for rheumatoid arthritis. Nope.

She tested for peripheral artery disease. Nope.

We had a nice list of nopes going.

By Christmas 2018, I was pretty much holding on to something while I walked. I was starting to fall at times. The good day or two of walking was a thing of the past. There were no good days. By February 2019, whenever I went somewhere someone was pretty much holding me up. I couldn’t walk alone. I was falling pretty frequently at home during the day. I figured out every single place to grab onto in my home to keep myself from falling. I couldn’t use a cane. I needed to much support, and a cane just won’t give that much support. I refused to consider a walker. If I had to leave home, somebody held me up. I could not walk unassisted. Period. Good days were a distant memory.

Photo by Matt Botsford on Unsplash

I had other things going on. It all added up to one huge annoying deal. I dropped things. I knocked things over. I had issues picking up small things or doing small things. I had tremors, tics, spasms, shakes…I was just a huge mess. I did find that CBD oil helps calm the shakes and tremors.

In April 2019, I went back to my doctor. Some of you are lost right now. Some of you are wondering why I waited so long. That’s me. I’m that person. If I’m not dying, in serious pain, bleeding to death, or due for refills, you won’t see me back at the doctor’s office. Extra visits are a no for me. Tests had already caused me to have extra visits. I waited until it was time for med refills. When I told the doctor how long I had been in that shape, she asked why I didn’t come in sooner. I think she’s starting to figure out that I’m that person. I used to call my old doctor’s office and reschedule appointments because I was too sick to come in. I would tell them I would come in when I was better. They were used to it. The new doc will get used to it eventually. I think she’s learning. I’m veering off optic, aren’t I? Let me go back and figure out where I was going before I got off track.

I decided things got worse after I doubled the dose of gabapentin. I stopped the second dose. No real change. I had started strengthening exercises and was able to use a cane as long as I could hold someone’s arm. That was a huge deal. Huge. By the end of April, I was able to walk alone with my cane for short distances. I needed help dealing with stairs, uneven surfaces, and slopes, but it was a huge step. I still needed help after I got tired, and I tire pretty quickly. Still, being able to walk without someone helping me, even if just for a little while, was a huge deal. That was my goal. My goal was to be able to walk with a cane. I said if that was as good as it ever gets, I’d be happy just to get back to that after everything.

Photo by John Gibbons on Unsplash

Ok. April 2019. Doc decided we needed to rule out MS. A double MRI later, she found no signs of MS in my brain. That’s a very good thing. And it’s one more thing on our nope list. Do you know what’s not on that list? A yes. It’s all nopes. There is no answer. None. Just more nopes.

After finding out that gabapentin prescriptions were going to require more frequent visits thanks to it being changed to a controlled substance, and to be 100% sure it wasn’t causing more problems than it helped, I stopped taking it completely. That’s when I noticed the other irritating symptoms became much more irritating. My tremors got worse. My morning shakes are worse. Sometimes I feel like my insides are jelly and it’s all going to shake right out of my body. Sometimes a limb just suddenly jerks. Sometimes I’ll have muscle twitches and spasms that last for hours. I had one inside my elbow (nobody even knows that muscle exists until there’s an issue) that lasted all night and kept me awake until well after the sun was up. Fun times.

Photo by Victoria Kubiaki on Unsplash

Oh, there’s more. It’s the reason why I’m not working and why this entire rambling mess is a big mess. Words get jumbled in my head. I think its the right word. It’s right in my head, but it comes out different. One example I’ve used a good bit. The word in my head was mayor. Mayor, mayor, mayor. My brain said mayor. My mouth said janitor. (Dear Mr. Mayor, If I refer to you as anything other than your official title, please forgive me. K, thanks.) Don’t even get me started on what my brain produced when I tried to say quiver. Sometimes when I type the words look right but I realize how wrong things are later on. I try. I really do. People who know me know I’m not this much of a mess with words and typing. They knows it’s a pet peeve of mine, so I’m sure they know how annoying it is for me. I can’t work like this. That’s for sure. Here I am, just a crippled idiot who doesn’t know the difference between janitor and mayor and can’t stop knocking things over. I’m just a huge mess. I’m useless. That’s how I feel. Useless.

I know many of you have seen me post about reaching a goal. I know you’ve seen me say I’d be thrilled when I reach that goal. Everything was about reaching that goal. I’m pretty much at goal. I can walk alone with my cane for a little while. I do have a day where I can do a fair amount of walking and then I’ll won’t be able to for a few days. Technically, I am back to having a good day, even if it’s not a full day and requires breaks. I thought after everything I would be thrilled to get just that little bit back because it’s a big deal. It’s the difference in needing help to do everything and having a bit of independence. I should be on top of the world. I intended to celebrate. Nope. Just another nope in my list of nopes.

Photo by Serenity Mitchell on Unsplash

If you saw me months ago and saw me now, you would know what a huge difference it is. It’s huge. Very few people see that difference because I hid. I hid from the world.Trust me. It’s a huge difference. I am 1000% better than I was just three months ago. To put that in perspective, my mind doesn’t work quite right and I can’t figure out how to do some things I have done for years. I have shakes that make me drop things or knock things over. I walk with a cane and have limits on how much I can walk even with a cane. The last time I had a (real) fall was a little over a month ago. (Stumbles and going to one knee don’t count to me. Those aren’t real falls. That’s just stumbling.) All of that is 1000% better than it was three months ago.

I should be thrilled. I thought I would be, but I’m not. I might be a whole lot better than I was, but I’m still far from self-sufficient. I still need a lot of help. I am not fine. I’m not on top of the world. I’m not celebrating. In fact, I’m feeling defeated and useless. And I have no answers. I have no clue why this happened. I don’t know why I’m going through this. I don’t know what is wrong. I only have a list of nopes and a belief that they’ll never figure it out.

People mean well. I know they do, but I’m struggling. I’ve seen more people lately since I’m able to get out a bit. Most people ask right away: “What’s wrong?” I don’t know. It reminds me that I don’t know. I start thinking I’ll never know.

So….what was my point? I know had a point to this last bit.

Oh. If you see me, please don’t ask me what’s wrong. Just ask how I’m doing and humor me when I say, “I’m fine.”

Months and months of hiding all of this, and now you all know. I’m just trying to find a way to cope with it all. I don’t want people telling me they’re sorry. That’s not helpful. It reminds me that I’m a lesser person than I used to be. I just need people to see the same person they saw before when they see me for the first time since this started. So, when you see me just say, “It’s good to see you again.” Just ignore the mess.

Photo by Austin Chan on Unsplash

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Amy Dodd Pilkington

Amy Dodd Pilkington

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Pilkington is an aspiring beach bum who enjoys travel and sweet tea. This published author has been featured in Health Magazine and many other publications.