Today marks my third year anniversary of my MS diagnosis. You can read about my previous updates here, here, here, here and here.
As of the writing of this post, I am a lost cause. I have been on four MS therapies/protocols in my three years since diagnosis and each and every one of them has failed me. The last one I was on is considered to be the strongest MS therapy on the market – and it, too, was a failure. I am now on a two-month hiatus from any MS therapies – letting the last infusion work its way out of my body and then just relaxing with only my daily symptom medications to see how I do. We (my husband and I) felt that I did much better when I wasn’t on any therapy and January 2014 will be the month for us to see how I do, before returning to see my MS neurologist in February 2014. There are two MS therapies left that I have not been on, and she wants to start one of them in February unless we feel it would give me a better quality of life to remain on no therapies. She also said that about 10% of those with MS are unable to tolerate or find help with any MS therapies and I could very well be in that group.
The dizziness, though, continues. Some days, not so bad. Some days, I cannot even walk and my husband has to help me move around the house. It’s so darned frustrating and upsetting! And we cannot find a common thread that happens before the dizziness starts. With the dizziness comes the balance problems most folks with MS have. I have fallen up stairs, crashed into walls, knocked over furniture, etc. Some days because of the dizziness and some days without it. Some days, the painful symptoms pop up, some days they don’t – again, no rhyme or reason or recurring event happens to be able to find a pattern for everything.
I apologize to my family over and over again, knowing that my MS hampers some of the kids’ fun in the house. I apologize to my husband, who has to take care of me when I cannot take care of myself. I apologize to extended family for not being able to participate in things I used to find joy in. And I apologize to myself for being a burden on everyone.
Nowhere is my MS most prevalent than in my quilting. I hit a high mark last month in feeling like I got my quilting mojo back – but, it has already left my body & psyche. I struggle by making myself go into my sewing room and working on a quilt project – FORCE myself to do it. I am usually happy with the finished project so am glad I made myself do it. I have learned that if I take 15 to 30 minutes at a time in my sewing room, and continue with that time increments throughout the day – I can finish a project without overdoing it physically. It’s just getting excited about a project and taking that first step into my sewing room that makes the difference of a difficult situation.
Thank God for my family. They uplift me when I’m down, carry me when I’m unable to carry myself, make up for my inabilities…and continue to love me. Without their love, I would have no purpose to continue to forge ahead of this brain-eating disease.
And I thank God for my online quilting and MS friends – they are a great lifeline when I need it the most.
We do not know what course we will take in 2014, but we DO know that we are aiming for quality of life.