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Your title says it all, yet you appear to be quite accepting.
Forgive me, but because you’ve not posted before I don’t know you. Who is it with MS? I assume you are progressive?
It always sounds so sad, end stage. We are always told MS is not something one dies ‘from’, rather we die ‘with’ MS. I do realise that this statement is actually incorrect, most of us will not have MS named as a factor in our death, but actually some people have such severe disability that it’s fatal.
It truly is a horrible disease, I am so very sorry you are at this point in your journey. And honoured that you choose to share this with us on the forum.
Is there anything we can do or say that eases your situation?
Hello again M&P
Thank you for explaining who you both are and the road you have travelled together. Obviously when one of a couple has MS (along with so many other diagnoses) both of you live with it. The same applies to my husband and me.
I’ve had MS since 1997, was RR for many years, experienced side effects from 4 different DMDs, so in the main have been without drugs to prevent relapses. As a result, I am now classed as advanced too. My diagnosis is currently progressive relapsing after I had a couple of relapses since being classified as SP.
I am not as advanced as you, nowhere near to end stage, although I cannot walk at all, have a stoma (colostomy 4 years ago), some cognitive problems, difficulties with my hands and some small swallowing trouble. I can see a day coming eventually where more of me just stops working and I will be looking at the end stage.
I completely agree that more attention should be paid to advanced MS. For example, my MS nurse is a bit too busy with her hundreds of cases which take priority (apparently - I suspect most of these are relapsing remitting, who ‘need’ more help with their DMDs). I am fortunate enough to have a rehabilitation specialist doctor though, who is brilliant and takes a holistic view. He reviews drugs, symptoms, all aspects of what affects me, even osteopenia, so he was instrumental in getting me on a bone strengthening drug when the orthopaedic doctor did not see the need.
I really admire the fact that you are living through the end stage, yet are still taking the time to campaign for better resources for others and are bringing your experience to others in order to help those who reach this stage later.
Thank you, M&P. This is something that none of us want to think about but which all of us should. I admire your teamwork and positive outlook in spite of everything. Please keep us posted.