Ugh! I am in such a bad mood today! From the moment I woke up I was just… angry? You see, yes, I am sleeping way better but I still don’t wake up feeling rested (like most of us with Multiple Sclerosis don’t feel). In fact, I really can’t remember the last time I woke up and felt like I actually got the amount of sleep that I did; refreshed and recharged, ready to start my day! Pft… No… Just fatigue. Doesn’t seem to be secondary (the result of poor sleep or some other symptom) since I am actually sleeping again. So that tells me it’s primary (lassitude). Fatigue for no reason other than the fact that MS IS BS.
After the 5 days of IV steroids (Solu-medrol) followed by a Prednisone (oral steroid) taper I felt pretty good; I was wired and getting so much done! Well, in the last few days I have felt like my symptoms are all flaring again! The fatigue is unbearable and my vision has been insane! It actually hurts to look at the computer screen most the time! I could film myself with my phone and see my nystagmus (my eyes wobbling left and right) while I lied down. I feel dizzy on top of this so not only is walking in a straight line difficult but sometimes I feel sick to my stomach. Even with my eyes closed I feel like I am moving, it’s terrible. Just to name a few things.
Now, what I have always wondered is why is it that during the summer, on days where the temperature spikes over 110 degrees (Fahrenheit) does my MS act up despite the fact that I have not left my air conditioned room that I keep at a steady 70 degrees? I have heard people theorize that, “maybe it’s the barometric pressure?” but from what I can tell on my phone it has remained the same? Humidity doesn’t seem to be any different either. They sell little “home weather station kits” that allow you to monitor everything you could think of and part of me wants to buy one so I can know exactly what is going on around my house so I can see if anything correlates with how I feel because this is driving me insane! I should not be feeling like this! I have been doing everything I can to reduce inflammation and just better my health yet I still feel like my immune system is on fire!
Yesterday I had one of those “I just can’t do this for another 40 years” kind of days. I couldn’t get myself up to do anything, my body was just dead! Like every atom in me that makes me who I am weighed 10 times as much as it should! All I wanted to do was lie down even though mentally I had a bunch of stuff I wanted to do. But I did spend some time reading through the May 2017 MS Research Update magazine from the MSAA (Multiple Sclerosis Association of America) hoping I would see something that would spark some hope in me. While there is a lot going on there was nothing that really stood out to me, nothing promising in regards to reversing the damage that MS has done. I want this visual and vestibular crap to go away! My quality of life would be so much better if I could just get rid of either that or my fatigue but as of now it looks like all I can do is learn to cope with it.
So I am in a bad mood today because I feel terrible and have no idea why. I am in a bad mood because there doesn’t seem to be anything out there to ease the symptoms that are making me feel terrible. I am in a bad mood because I just don’t know what to do. There has to be something. But I haven’t been able to think clearly lately so I just can’t figure this problem out. I’m just tired; physically, mentally, emotionally, everything. I’m sick of being tired and tired of being sick.