I thought you should know the truth. It’s now 25 sleeps until baclofen pump surgery day and I’m falling apart. Losing my mind. Feeling terrible and wishing my life away. I’ve upped the dose on my antidepressant out of sheer desperation because I’m sincerely not sure how I’m going to get through these next 25 days.

I’m telling myself that everyone has cabin fever at this time of year. Everyone feels cooped up and miserable and dying for the winter to be over once and for all. I’ve never been a warm weather vacation in the winter kind of girl but I’m yearning to be somewhere. Anywhere. Anywhere but here where I am counting hours until my next handful of pills.

Speaking of those pills…I’ve had at least two instances of those pills just not working at all. I usually get at least three or four hours where I can move around very awkwardly and janky but I can pull it off. Last Friday night something crazy happened. I took my dose at around 7PM and by 9PM I still couldn’t bend my knees to get my legs to move.

This meant that it became impossible for me to be comfortable in any position. I couldn’t sit with my legs down because they wouldn’t bend – and even if they would, I knew I’d end up with feet and ankles the size of grapefruits because I’ve started retaining water there and it becomes painful, it gets so bad. I tried multiple times to get myself set up in my bed to watch television – still on Homeland but now in season 6 which means Carrie Mathisson might not get me through the next 25 days after all. Every time I tried to lift my legs up on to my bed in their 90-degree bent position, I’d end up unable to land on the bed with my foot down at all. I’d have to roll back up and try not to fall off of the bed because my legs wouldn’t bend in order to land on the floor properly. After a few attempts I stood in my bedroom and cried like a lunatic.

I tried to think of what I should do. Should I call someone to come over and help me get into bed and position myself so I could stay there? But what would happen when I’d inevitably have to pee? Would I be asking someone to stay over and watch TV or sleep next to me? Or roll me over when I needed to get up and bend my legs manually when I couldn’t bend them myself? Who could I call at 9PM on a Friday night that would be even able or willing to come? Who would I want to see me like this in a complete broken state where getting into and out of bed was even too much for me? It just didn’t feel at all practical, so I just didn’t do it. I knew I would have to get through it myself. That’s just the way it goes sometimes.

The last time I called my sister for help she dropped everything and came right over. We ended up calling an ambulance to get me to the ER because I couldn’t put weight on my legs without falling down from the intense pain in my back. I assumed something terrible had to be wrong. Maybe something even not MS-related at all. The ambulance came. It was stupid and dramatic and painful because it was so cold that night that my legs got even more spastic the second the cold hit me and I couldn’t lay flat on the damn stretcher. The EMTs didn’t even know what to do with my legs. They tried to strap them in the right position but they kept flinging out in front of me in painful leg-long spasms no matter what they tried. After a urinary lab and a CT and some IV pain meds and fluids at the hospital they determined there was nothing wrong with me and sent me home. Back out into the cold with my stupid legs that refused to move. Then we had to call my brother and wake him up, too, just to get me back in the house when nothing was actually wrong with me. All of that for nothing. All of that just to end up back at home, back in bed.

I knew there was nothing anyone could do about my medication seemingly giving up on me on Friday night either. I knew I wouldn’t feel better just to have someone there to see me fall apart. I knew even if someone dropped everything and came running it would just mean two people in my bed feeling like shit. I took an emergency Klonipin and tried again to get myself into bed. It was only two more hours until my next muscle relaxer dose. I could make it. Maybe it would work? And then if it did all of the drama of calling someone to come rescue me and scaring someone to death with a random call from a hyperventilating me would end up being for nothing. Again. I got myself into the bed. Got my legs bent by using my arms. Let the benzo kick in and help calm me down. I would be OK.

I was and I wasn’t. Next time something like that happens, I’m going to call someone. I’m not going to be such an idiot. Probably. I can’t really say for sure.

I feel ungrateful complaining about any of this. There’s a date! It’s coming! All I have to do is hang on. It’s just that I feel my grip on the outside world breaking free. I tried to remote start my car today for the millionth time because it hasn’t been driven for so long and I’m afraid of the battery going dead but my remote starter app told me I’d used up all of my remote starts possible and I’d have to go start my car with the key. Seriously? Like if I could do that don’t you think I would?!?

When your inside world is overwhelming you go online to feel connected to the rest of the big wide world and that’s when you feel it most, this crazy disconnection with the outside world. Ironic, right? I see vacations being planned and amazing places being visited. Nights out and manicures and pedicures that I’m not having. It might be slowly killing me yet the solution to the problem (i.e. staying off of social media) isn’t really an option when it’s one of your only ways to connect with other humans at the moment.

I can’t concentrate so I can’t read. I can only watch TV but I can’t even do that comfortably because now it’s hard to even get into and out of my bed. I’m not comfortable when I’m actually in the bed and I’m not comfortable when I’m out of the bed. I’m cold or I’m hot. I’m sleeping in four-hour increments between working meds (when they actually work). I’m so tired I can barely keep my eyes open but sleeping is hard because…well that whole getting into and out of bed thing once my meds wear off.

My arms are doing double duty because they’re forced to compensate for my stupid legs. They grip and hang on and carry and lift. My elbows are sore from lifting my legs. My fingers hurt from gripping my flesh trying to get my legs to stay at a 90-degree angle when I’m in bed. My feet are sore on the bottoms from being on them all of the time, even when I’m in bed. I have to wear my furry grippy socks in bed even if my feet aren’t cold because that’s the only way my feet don’t slide straight out in front of me, but they make my feet and ankles swell when they get too hot (which they have gotten since it’s been unseasonably warm this winter – usually a great thing in January but not something I can go outside to enjoy in my current state).

I don’t even know why I’m writing this. I’m on my own damn nerves. I know I have to be on yours. I also know I’m not alone in this. I know you’re all there with me and I also know some of you are going through things that are even worse. I guess I just needed to get it out of me so I could try and move on and figure out how to focus on the finish line of this marathon I never wanted to run. I just want to move forward from this chapter that feels like it’s been going on for way too long.

But what does that even mean? How do you go forward after standing still for so long?

There’s no going back to my old life. I’m still sick. I still have a chronic progressive disease that is likely to continue getting worse. I am afraid to hope that I might get some of my life back. Or get a life, a new life, is probably more accurate. Some kind of life that doesn’t confine me to my living room. Some kind of life that involves actually living and not just waiting for the next bad thing to happen. But even if I get this one symptom under control, it’s still just the beginning. It’s not everything. It’s just this one thing. Maybe I’m pinning way too much on this one thing! Maybe not much will change at all. Why am I so afraid of hoping for something to change?

I just want a chance to figure out a way to live with this. I just want to figure out how to stop allowing this disease to consume me. I want to be one of those “MS doesn’t have me” people from the commercials but I’m not sure I have the capacity for that kind of hope. How long do you live in a particular situation before it starts to feel like things will always be that particular way? I guess I’ve been in this situation before but it was for good. When I was happy, I allowed myself to believe I would always find a way to be happy. Then this happened and I lost that faith. I felt like it was gone. All of my happy was gone. And I started to believe I would always be sad and broken. It had finally caught me! The pain I have always been so sure I somehow deserved.

I want to have hope. I want to believe that this story isn’t going to end with me being confined to my house, being driven around by family members from house to house from doctor appointment to doctor appointment, having nights where I can’t even get into bed without drama. I want to believe that my life isn’t going to just be this. This thing it’s become over the last four years. I want to believe that good things will happen to me and for me again. Why is that so hard?

It also feels like a lot of pressure to put on this weird little machine that will be embedded in my abdomen and connected to my spinal cord. What if it doesn’t change things much at all? What if it’s just a small improvement but not enough to make a real difference? I wish I knew what to be hopeful for! I am far too realistic for blind optimism. I’m wishing for some kind of safe guard rails to put around the hope I want to feel.

Unguarded hope feels far too dangerous to me right now. But the complete lack of hope feels equally as impossible. I guess in my current situation that’s a good thing.