ELLIE'S BLOG on Living Well with MS

When someone asks me "how are you?"  I always say" I'm fine" even if I feel like an October wilted vine. Then if someone suggests that I'm looking tired I usually  say "I'M FINE" even if I feel like a November crumbling vine.  And if I'm never around that's  usually it's because" the vine" like in December has fallen apart and it's time for me to hibernate too. 

It's no fun for me to be around people when I'm very very tired due to MS fatigue. I feel that when I look tired it's harder for other people too. If I'm tired and don't look tired which I make an effort to do it's manageable. Which is good otherwise I would be a recluse.

If you have read my previous blogs you will know that I have been much better this past year since I started taking Ampyra. In August I started down hill again. As I always get better I expected the same slow but definite recovery. But one week after my monthly Sol-u-med instead of maintaining higher functioning I really went into a relapse and I was so very very tired and achy. Also I kept losing and ended up spending more time in my electric wheelchair as I could only take 2-4 steps. Of course I waited hoping for my body to recover.

But then I had had it and called my Neuro's office on a Friday afternoon to request an earlier sol-med treatment the following week. After checking with the Doctor they got back to me Monday morning and asked how I was. Of course I said "I'm fine". Then I realized and laughed and said: " No I am not fine." And as the Doc had approved my earlier sol-u-med and we set up my appointment.

I've been thinking about my saying "I'm fine" when I was requesting an earlier sol-u-med treatment. It sounds like a ridiculous statement in the circumstance. But it was my automatic response to "how are you". I think I respond that way meaning 'I'm handling this emotionally and making necessary adaptations, resting more, using assistive equipment etc. and I did feel less tired'.  But I  called my Doc because I needed more help as I felt I should be getting better.

When  I was having my sol-u-med treatment  the nurse in charge understood what I meant by  saying "I'm fine".  "It's you attitude" she said.  "Your MS symptoms are worse but your not falling apart. Your handling it.  And that's what really matters when you have a chronic progressive disease like MS."

And what also helped was knowing they would get back to me with help. I was also asked if I wanted to see my Neuro both on this last visit and the prior month as I wasn't doing as well. I declined as I always expect to get better. But they did reschedule me with an earlier visit with my Neuro Doc .

Now when I got home after my sol-u-med treatment my walking ability increased.  And it lasted for the next 2 days I could take up to 300 steps. But then I was right back down  again to 2-4 steps and arms too! That has never happened before since I started on sol-u-med but I hung in and I was better after 3-4 day's. Then again 3 days later I was back down again. I do keep a record so I will be prepared for a talk with my Neuro on my coming visit.

It's so important to be positive about what you can do and accommodate your MS in your life.  But it's also important to recognize when a negative change is occurring and to act on it. I am a Diabetic too so sol-u-med  can not be given in a large or successive doses.

I have done well on Rebif but I also did well on Betarseron than it stopped helping. This may be what's happening. They call it a Breakthru. So I may be thinking about a new immuno-modifying drug change. Or maybe something else or just a patiently wait and see.  Luckily I have a great trust and respect for my Neurologist.

I'm fine but my MS symptoms are not fine and I need help of some kind.

                                                                      ellie