I’ve spent some idle time reading through various blogs of others suffering from chronic illnesses, specifically MS. Until I had I thought I was doing well. But here I see people writing about working in their garden and doing … well, normal everyday things most of the time. That’s when it hit me that I can’t even remember when I last had a ‘good’ day. We can argue whether that’s due to failing short-term memory or not, but most likely not as I’m sure if I did have a truly ‘good’ day it would definitely stick in my mind.
It’s gotten so that ‘normal’ is bad, and ‘good’ is unheard of. Take Wednesday last. I had a cyclobenzaprine the night before so I got some sleep which lingered into the post-pill hangover that ruins the morning. But I wasn’t coughing so much, and since I had nothing to do but sit around and do nothing the ill effects were at a minimum. Eventually the residue of the medicine wore off and the coughing increased, right about time for dinner. That’s as close as I get to a ‘good’ day.
Going to town to do shopping and errands is an exercise in logistics and “Plan B” planning, as I set down which stops I absolutely must do and which I can leave off once I get to feeling too ill to continue. Town is all of 15 minutes away, and it’s quite small and used to be easy to deal with. Now it’s a bloody marathon of forced effort while struggling to breath and walking on legs that feel like they belong to a marionette. So I preemptively eliminate the inessential stops, sometimes even before I start feeling sick to my stomach – which generally begins before I get off the end of our road.
Doctors can not understand this. They figure if you are able to make it into the office on your own you can’t be that bad off. HAH! I suppose the day they roll me in unconscious on a stretcher they’ll get the message. In fact very few people (not just medical professionals) understand that you can force yourself to do what needs doing, and ‘pay for it’ later. On more than one occasion I’ve been told to get a divorce, although that isn’t the way it was phrased. More like “make changes to make things easier for you”, which unfortunately would make this really, really hard on my wife. Strangely I don’t want to do that. At some point there isn’t going to be any choice, though, and lifestyle will be radically changed one way or another. I am not looking forward to it. I like the way we live, except for the part where it’s just plain becoming too physically difficult for me to manage.
We know there are no real medicines for MS, just supportive treatment. I have even gone looking to see if there might be a better choice for relieving the spasms than what I’ve got. Something that isn’t counter-indicated for long-term continual use, does the job, but doesn’t leave me feeling worse than dead in the morning. Baclofen might be the right choice here, but that means I have to talk the MD into a small trial Rx to find out. Frankly the local is out of his depth with this and the specialists are too busy to consult with in any reasonable amount of time.
Therein lies a tale. Summer is about to roll in here, and with it all the projects and fun – which it is doubtful I can participate in. I need to know in advance if there’s any chance I’ll be able to get on with things. There are many types of projects which can not be done piecemeal, and I’ve already got three of them rotting away because of the problems. I need to know if now is the time to give it up and change everything. You can not anticipate a future with no idea what the rate of decline may be. Tidying up loose ends and leading a less physically demanding life might be in order. Although that change will not be without a lot of stress when it comes.
And it will come.