Faith Amid Funkiness When SPMS Brings the Blues

I am speechless, Jennifer. Simply speechless at how you have expressed MS suffering with such beauty and truth. I thank you because your words are lyrical and have spoken for me also.

Nice article and how true. I too fight the same fight and have done so for over 28 years now. If you ever think for one second how bad your life is, simply look around, watch the news or listen to the radio. There is always people in worst situation than you are.

And there is now light at the end of the tunnel, at least for my MS. I have been in a wheelchair for 4 years now and fingers crossed, my symptoms are steadily decreasing (11 months now - No not relapsing - remember I have lived with this for 28 years, my MS NEVER relapses!) Why because of this drug Ocrevus ™ (ocrelizumab) I was only able to transfer seat to seat, not stand and now I am able to walk behind my wheelchair for about 20 metres and getting better every day!! So there is always hope!

I do enjoy reading your Silver Linings articles. Even before MS I would say to my children "there is always someone worse off than you, show kindness and empathy". That is still the case. Even with SPMS I feel my good fortunes. Though I can also find myself in frequent tears. I have a hard time expressing my feelings, fears etc. without emotional upset. Even after 20 years. But there is always a silver lining, just in a different mindset. Thank you for putting so many of my feelings into words that I could use when speaking to others.

Very well stateed- thank you for my vision of Krytonight!

SPMS is not what I anticipated 19 years ago when I was 60 years old and running long distances and loving that so much. I thought RRMS was "it" in terms of progression. I had had it since I was 27. It was so slow and benign it didn't seem a problem...except the rare "once in a while". And there always seemed to be a work around my husband and I could figure out. Yet, here I am at 80 with SPMS I do dream of running trails with the occasional walk in wooded places with long distance views of tall mountains, sun and clouds scudding overhead. Clearly the dream is of another time and place.
I wonder if somewhere in that history some doc said anything about progressive MS. Truly I don't think so. Not until I was depressing with pain and finding myself so weak and uncoordinated I could not walk was a drug recommended, Ampyra. It actually started working within 3 hours of the first dose. Those small uncoordinated steps were the elixir of joy. And that was my first medical introduction to SPMS.
Many people discount that those of us with MS can actually optimize our lives. And we who are getting "quit old" are rarely asked how we have managed. Many of us do "manage" by various means including strict diet control and mind/spiritual controlling efforts. No, it is not always successful. We then beat our way around to another possible solution and another and another. Frustration is not unusual...but we can usually find another way to do or feel about something in a "better" way.
But I do know beyond a peradventure of a certainty, not all of us follow the same track or can manage similar trajectories. Our disease seems to be quite unique to each person. However, it is good to know how others manage...it should not be secret nor should it be considered a manipulation, a demeaning of others or a lie. It should be considered a gift, a 'pearl beyond price'. I think Jennifer gave us such a gift.

Gwenie

Thankyou Jennifer for putting your words as i also feel.

Thank you- this is very helpful for
me.

As always, I look forward to reading your articles. However, they are more than that for me. They are “inspirations”. Keep doing you.