Today is another, larger #MillionsMissing protest, and I am missing it. I miss a lot of things.
One of the best things I ever did in my life was to drive cross country, camping in national parks. It changed my relationship with nature and exercise. I realized that I could be athletic, and enjoy it. My heart opened further with every gorgeous vista and soothing campground. I felt whole and complete.
I never did anything like that ever again. Those purple hiking boots in the photo were the ones I bought for that trip, and they are still not worn out more than twenty years later. ME arrived and kidnapped me from my life.
Good friends of ours recently made their own cross country trip. With every picture they posted from the road, I felt my sense of loss renewed. I belong out there on the road, and on the trail. But this is probably out of my reach, permanently.
For many years, I didn’t think about camping. I missed it too much. After twenty-two years of ME, I doubt I will ever camp again. That loss seems too big to handle.
How could a disease that ripped me from almost everything I loved in my life receive so little attention? How could I be sitting here twenty-two years later, without ever having had a treatment to try that was not off-label or hypothetical?
The lack of medical progress, which has sentenced me and millions of others to a life that is less than, is a direct result of our government’s failure to invest in ME/CFS research. The research dollars must flow. That is our only hope of escape from the life sentence that is this disease.
I am one of the Millions Missing. Don’t let me disappear.
I can relate. But just know that after 25 years of being very sick (much of it homebound and bedridden), and really missing hiking and camping and traveling, I started antiviral meds and VO-LA! Almost immediately I was able to pack the car and go camping — for the first time in decades. (Note: I did have to use a wheelchair while camping.) Unfortunately, the good results from the antivirials did not last. Yes, I was back in bed after a few months of a taste of bliss. But at least the short spell of “relative wellness” lets us know that our bodies are capable of recovering. We just need the research and investments in studies and clinical trials to find the right treatments. And because of that, the #MillionsMissing are invisible no more! We will change things for our own ME-saddled lives and the generations that come after us.
Wow!!!! I wish the benefit had been permanent for you, though.
Seeing your boots reminded me how much I loved walking across cities… My walking capability these days is quite good, but not that good. You describe your cross-country adventure so vividly, and I’m sorry you’re now missing out on such a life-enhancing experience. M.E. researchers have made some interesting biomedical discoveries despite very little support (and some opposition) – just think what they could do with some significant grants.
I have had an almost identical experience. For me, I was not only active in nature, I was also an athlete in sports. It filled my heart with joy and it was big part of my identity. I had to completely redefine myself… and the new me was a sick, debilitated, depressed & disabled person who after about 15 years, eventually lost hope and I have settled for being grateful for what I DO have & what I CAN do…
Yes I agree Vaughan. Maybe not ‘losing hope’ but it certainly has changed.
I also wanted to say that I had said at the weekend how long it was since I had walked to the beach. This is an easy 7 minutes from the house for all of the well members of the family – even the 7 year old. My husband assured me I would be doing that again…. I am not at all sure about that! As time goes by I am less and less sure. I have had CFS/ME for 18 years now.
Jennie, I can really feel with you on this, but I suspect that you are still young enough to take good advantage of whatever discoveries are made that point to real help for us–don’t give up! I started sea kayaking at 50, and had over twenty years of it before being hit by ME at 74, and even at 83 there are days when I feel I might risk an hour or two and see what happens. I know ME has taken a huge and vital chunk out of your life, but the evidence seems to suggest that there is less deep and long term damage than one might fear–recall those who responded to the Rituximab trial so fast–you may not repeat your cross-country adventure, but don’t throw away those boots yet! Anyway, that is my hope for you–and for all of us.
Thank you, dear Chris. What an uplifting message, and I really needed to hear that today.
I think the worst part of all this is the “invisibility” of ME. Friends still don’t understand why I can’t join them for a walk on the beach or lunch. They insist this will “make me feel better” and that “I need to get out”. My earning power has gone down the tubes and I worry constantly about the debt I’ve incurred – I’m scared to go for an early retirement but don’t see how I can possibly keep working. Sometimes I go back to bed and I’m not sure if it’s because I’m crashing or if mentally I just can’t handle facing one more hour of pain and fatigue.
Thanks for your post. I can relate.
I tweeted a photo of my boots & backpack as part of the #MillionsMissing online protest (small day pack, not the serious backpack which was donated to charity long ago…)
https://twitter.com/ahimsa_pdx/status/780792112753283072
Well said, Jennie – thank you!
Agreed. Coming from a background as a financial professional, I can literally “count the cost” of this illness. It bothers me a lot at times, because I have no retirement savings left. I also have credit card (medical debt) and no health insurance. If you have financial stability, you can focus on the illness. If you don’t, you have a dual focus where you are not able to truly focus on either one. You are constantly weighing medical treatments in the light of cost vs. benefit. Often cost wins out. Not that it is all bad, by looking for cost saving options I have found better solutions. What is difficult is knowing I could be much more improved with better resources.
Research is something we have been funding on our own for far too long.
We really don’t talk about the cost, and it’s a very important point.
I sympathize with you. I can relate to everything in your post.
I just cut myself off from doing several things in my life that I used to do and distanced myself from them. Disappointment is an awful thing to deal with — and I just lowered my expectations and recognized my limitations. That doesn’t mean that it isn’t painful, but I try to minimize that.
This is an awful disease, even more so because it’s not recognized by the federal government, much of the medical profession and the health insurance and health care industry. We all have to validate each other.
You make a huge contribution to the ME/CFS community and in our advocacy work.
It’s appreciated.
I feel your pain. It’s been 30 years since I was diagnosed with CFS/Fibromyalgia, and the pain of missing out on life still hurts daily. Thanks for all you do to advocate for all of us that are “missing”. Bless you, and your family.