Of Sandcastles and Breakdowns
Over my many years of living with MS, I’d like to think I’ve done a decent job handling it. I think that’s generally true of most people with a chronic illness. You do a good job of living with it because you have no other choice. You get accustomed to dealing with the pain, the fatigue, the numbness, the confusion, and the other symptoms that your disease throws at you. Until you can’t. Every so often, despite having lived with this disease for decades now, I lose it. I’ll go through several days, even weeks, of my illness causing me problems and I’ll handle it without issue. Then, inevitably, it will get to me.
The onslaught of painful and frustrating symptoms
No matter how put-together and “normal” I look on the outside, I’m struggling inside. There is SO much that people don’t see. I’m in pain on most days. Fatigue makes me utterly exhausted on most of them, too. Cognitive problems leave me disoriented. I drop things as my hands suddenly go numb. I fall often, causing even more pain, because my legs abruptly stop functioning correctly. Phantom sensations annoy me, making me think my legs are soaking wet, despite being dry. Spasms make something as simple as getting comfortable on the couch seem impossible. It’s an onslaught of symptoms.
I'm reminded daily of my losses
Sometimes, they are severe; sometimes, they are minor inconveniences, but they are there, in some form, every day. Even on a day when my symptoms are mild, I am reminded of what the disease has taken from me, like my career. The realities of my illness are omnipresent, no matter how I put up with them or try to hide them away. My life is like a sandcastle too close to the water’s edge that the waves keep hitting and hitting until eventually, it collapses.
An emotional breakdown
Like that sandcastle, I can only take a certain number of waves before I melt under the incessant barrage of symptoms. Eventually, no matter how strong I am, no matter how long I’ve been doing this, I break. I get hit by that last wave, and it’s too much for me. I crumble. Living with a chronic illness like MS is punishing. Not only physically, but mentally. It will get to you at some point and there’s no shame in that. It happens to everyone.
When I want to lash out
I do my best to handle my little breakdowns. I try hard not to take it out on others, but I’m not always successful. I’ve gotten better at not lashing out on social media about it, but still struggle with that at times. I’ve improved in how I handle these breakdowns, I try not to make others aware of them, but sometimes, it can’t be helped. I want to lash out and scream that I’ve had enough. That it’s too much. That it’s not fair. I want to say “why me” and “I don’t deserve this”. Mostly I want to scream that I give up.
Pick yourself up
The thing with a chronic illness is that you can’t give up. This isn’t a movie you can walk out of. It’s not a race you can cut short. It doesn’t stop because you want it to stop. So after your sandcastle has melted, and the tide recedes, you do what you always do: you build a new one and hope it can take even more waves this time. You keep repeating this process over and over again. Sometimes your sandcastle will take a lot of waves and sometimes it will only take one big one before crumbling, but you keep building. It’s OK if your illness wears you down sometimes, it’s expected. It’s what you do after it knocks you down that matters. So, let it get to you occasionally, but then get back up, and improve your castle’s walls (and maybe add a moat, that’s my favorite part of sandcastles).
Does your employer provide workplace accommodations due to your MS?