1) It's easy to take feeling well for granted. When things are on the up, life is good.
2) That said, I hope I never forget the low points. They provided perspective on what's important in life, empathy towards others, and gratitude for small things that we would otherwise miss.
However, I do not wish to re-experience the way that I felt at the onset of this disease. I had one of those "one step back" kind of days today, and it's amazing how quickly feelings like fear and anxiety can activate. I woke up with a little bit of nasal and chest congestion, as well as a fever. Nothing I can't get taken care of, right? All I had to do was get in to see my GP and then nap the day away. But for some reason, I felt panicked, and embarassed myself by breaking down at work and then in the doctor's office. Why the tears? Prednisone? It's nice to blame it on drugs, but then again, there's no reason that I shouldn't be able to handle something like that.
The second source of health-related anxiety is some muscle soreness. I have been working out fairly regularly, and haven't experienced much soreness related to it. Yesterday I did a dumbell workout with a BOSU, which is half of an exercise ball on a flat base. It causes instability when you stand on it, activating muscles in different ways. I also aqua-jogged for 30 minutes. Today, I am abnormally sore in multiple muscle groups in my legs, arms, and back. I hope to heaven that it is the result of this workout. Although it was a little different than my usual routine, it wasn't at all strenuous, so I am worried. I mean, really... sore from 10lb dumbells and aquajogging?? This whole thing started with the sensation of post-workout muscle soreness, but in the absence of a workout. I just reduced Prednisone from 50mgs to 40... what if the disease is creeping back in? What if the Methotrexate stops working? What if I stop getting better? What if I get worse?
It doesn't take much to let the what-if's creep in.
dear KH,
ReplyDeletePlease don't panic.....nothing will happen to you.Trust me i'm also a patient of PM and fighting with it from last 10 years.I've seen it's up and downs....i know it's tough and irritating when u want to do so much and ur body doesn't let u do that.I'm also on Methotrxate 7.5mg one a week and 5 mg predisolone from last 10 years(the doses of predisolone varied from time to time).....The only thing that work with PM is not to exert urself,know ur limits...don't compare urself with what u used to do earlier(beforePM).Know ur body and listen to it.when it says it's tired pl.s just stop it right there and wait untill u feel completely ok.And don't play with predisolone...do it only on ur Dr.s advice....and right now u r on higher side of predisolone...it will take u another couple of months to come to some reasonable amount of predisolone and then u can start ur exersise routine.....I know it's so hard to just sit idly and stop urself from doing those exersises,running......I did it by myself...i was on a lower dose of predisolone after 9 year of my Pm..thought i'm perfectly alright and started doing this Yoga,running 4 kms on the treddmill and Playing Basketball for 1 hr daily...ohhh i thought it's over i'm perfectly alright and then in just 3 months the Relapse happened..I was lucky this time and got Control over PM in time.My Dr. shouted at me....To b honest this time i was so scared,just the thought of happening "it" again made me so depressed.I was never depressed in my entire span of illness.Anway i learnt my lesson.My immunity is almost gone.I'm prone to getting all the infections...i can't tell u howmuch of sickdays i've went through in this one year....i'm still fighting with it.....
Don't worry....just have the patientce and spirit....rest will b taken care by GOD.It's just we've to fight with it daily and it's better if we do that happilly and without complaining.We still have so much to thank to God...for not making us completely handicapped.....sorry i just wrote so much.....in a hope of making u feel better.Take care and have faith...u did it till now and i know u will fight it again.....take care.
Thank you. It is certainly difficult to reconcile the difference between what was normal for your "past" self to do and what your current/future self is now limited to doing (or not doing). I am scared of the long-term relapses, disabilities, malignancies, etc. more than anything else because there is no way to predict or control the disease. I am now scared of every little tweak and change in my body... I don't know if and when this monster will decide to attack again, so I have constant paranoia. There have got to be some research/progress/cures towards the horror and insidiousness that is autoimmune disease.
ReplyDeleteHi KH,
ReplyDeleteI know the chances of relapses r there but only if u stop taking ur medicines.It's been 10 years and i'm still fighting with it.I still get the muscle pains and still feel tired if i walk 3-4 kms a day.It's so frutrating to tell everyone that inspite of looking normal I'm not healthy.No one seems to understand it as they haven't experienced it.
Anyway don't worry too much .It's just a couple of months u got it and u have to go a long way.The key is keep fighting and b positive.
We all can remain in touch so that we know what latest is happening.....according to me the patients r the best source to tell us the what's happening with us and what to expect.
Just b strong and take care
This post is right where I am right now. I'm reading your blog like a best seller on the New York Times!
ReplyDeleteAnd as far as the sinking feeling of when you wake up a little sick and just need to sleep, does that ever change? It hurts so much that my girlfriend thinks that when I'm not feeling well and all I want to do is sleep is just an excuse for me to be lazy...
Battle on!