This post has sat in my drafts for a while. It wasn’t so tough for me to write as it is to publish. I am generally very private about my medical issues, but someone reminded me that I am likely not alone in trying to run a farm, work, and live with a couple of monsters and that, perhaps, others could find inspiration. I am all about inspiration. So, here goes.
When I was first diagnosed with MS 21 years ago, it took me a while to come to terms with the disease – to really understand that this wasn’t something I could fight. I had to, instead, learn to live with it. I came to call it “my monster.” Often it slept, but when it began to stir I knew I had to settle down so it would not wake up entirely. I’ve come a long way from that diagnosis. I have primary progressive MS; the monster is in a cautious slumber. I also have MDS as a result of prior treatment for the MS. Both cause fatigue, among other symptoms.
I have been hospitalized over a week twice since I bought the farm. Both times, I didn’t settle down, but pushed myself. Things needed done. Period. How else were they going to get done? After the first summer, I knew I needed help and began advertising for workcampers. It has absolutely made a world of difference – not just having help, but also that ever constant awareness that I could wake up tomorrow and not be able to walk, or to see, and I won’t be by myself.
Summer is here and it is the most frustrating season for me. You see, MS and heat do not play well together at all. One day in the heat can put me out for weeks. It is really hard to manage when so many things need to be done. It is hard enough to manage when you don’t have a monster tossed into the mix. It isn’t unusual, for example, to realize it is 9:30pm and I haven’t eaten anything because I’ve spent the day working fueled on caffeine and gatorade (truth). I am also plagued with guilt when someone else is outside working and I’m not. One of the tough things about MS too is its invisibility. Most people don’t know when I am struggling, unless I have the hug. The MS hug is like a constrictor wrapped around my chest. Tightly. I can hardly breathe or move. I usually slip away inside and curl up on the couch in the fetal position until it passes, generally in about 20 minutes. While I have become an expert at hiding my disease, I can’t hide the discomfort of the hug in front of people. Unfortunately, the medication that treats the hug also causes fatigue. So, I deal.
While MS impacts everyone differently, almost everyone suffers from fatigue. That fatigue is usually so hard for us to explain to folks without MS. It isn’t just tiredness, but a bone melting exhaustion. Imagine, I sometimes say, that you are walking along and all your insides begin to turn to jello; your brain gets foggy; and it feels as if someone gave you a strong dose of sleeping pills. That is pretty close.
When I do get tired, the muscle spasticity that is also common with MS causes debilitating pain in my legs. That fatigue has to be managed carefully. I manage some with medication, but because it masks the fatigue, I still have to be careful. When fatigue is pushed too far, the monster begins to stir. Fatigue, heat, and stress exacerbate MS. The damage caused from each exacerbation cannot be undone.
I also have numbness in most of my left hand (making milking difficult) and weakness throughout my left side. My feet always have the pins and needles you might experience after they fall asleep. I have balance issues that are definitely compounded in heat. I am not at all graceful, not that I ever was.
MDS carries with it a myriad of symptoms – shortness of breath, fatigue, bruising, bone pain, and a seriously compromised immune system. I think my farm is magic though. I have my hands all the time in all kind of ick. I touch newborn kids without gloves (a no-no even for the healthy due to brucellosis). I don’t get sick from the farm. Magic.
Some days, I look at all the things that need to be done and I truly wonder how I will get there. One step at a time. My diseases are all about self-management and adaptation. I’m still working on that.
Though I get short of breath, I can lift 50lb feed bags all day when the weather is cool (ok, I am exaggerating, not all day!). In the summer, I struggle with one. Today I did seven, but it took me an hour and breaks. I’m ok with that. Summer slows me down.
Even on my worst days, it is all worth it.
This is worth it.