I'm Fine

A simple response often masking a complicated answer. The truth is I don't feel fine. You know when you are sick and just feel tired and run down? Some days it is more manageable but the overall feeling of being unwell has progressively increased over the last several years. It can still ebb and flow throughout the day but I've always had more energy in the mornings. There are some things that make it worse such as a urinary tract infection, but often I don't know what's causing what problem or if it's just MS.

About 2 months ago I started feeling really rundown and decided it was time to test for a UTI again. I had gone for about a year without an infection. I've finished 2 rounds of antibiotics but I can't say I feel much better. I am thankful I do not have the other often painful symptoms associated with a UTI. Mainly just my daily fatigue and spasticity are worse than normal.

The same pattern emerged last year. After 2 to 3 rounds of antibiotics I was still feeling pretty tired, but the tests were not supporting an infection. I was also experiencing more dizziness than normal. I went to my primary care and he agreed to do some detailed bloodwork just to see if anything else was going on. There were a few minor but unusual findings. So he referred me to a specialist and we did a another deep dive. Again a few minor unusual findings related to my immunoglobulin levels and I was referred to another specialist. Unfortunately I did not get any answers. I appreciate all of these doctors because they were willing to look beyond the ordinary. Sometimes that's what it takes to find answers. And sometimes you reach a dead end.

Increased dizziness and fatigue were now an almost daily occurrence. Every year it feels like my "normal" has shifted. Every year I find "I'm feeling bad" more often and there are less events that bring enjoyment. When you don't feel well, you just want to find something that brings relief. That's where I'm at. I've let go of the hope of healing. I'm holding out for something that provides a little relief and I'm hanging onto my independence as long as I can. I am grateful my dizziness has improved some over the past few months.

A little over 10 years ago when I was having some difficulty but still walking, I finally figured out I had MS. I started a common MS medication and it made me feel bad. Much like what I have described today. I switched medications several times. I told the doctor I could handle the physical part of this disease but I would rather enjoy life and be in a wheelchair then be able to walk and feel bad all the time. I still believe that statement. The physical part of MS for me is incredibly challenging. But feeling bad all the time while you're tackling that challenge? That just sucks.

There's a lot more to come, but this is where it starts. This is chronic illness in full display. One thing I have learned as I live through my challenges is that I am certainly not alone. So many people are dealing with some type of often invisible symptoms or illness that affect their daily life. It really has helped me to not judge others so quickly. If we take the time to learn the whole story, it makes it easier to react with kindness and empathy.

Update; I finished the second round of antibiotics almost 3 weeks ago. This week I have progressively felt a little better. Yesterday was a good day. Today I'm tired, but not giving up on the day just yet. When I feel productive, I know I'm having a good day and I will take those days whenever I can get them.