A couple of weeks ago, just before my life was so rudely interrupted again by my dysfunctional mast cells, I promised I would write a post about Jennifer Brea’s new movie, Unrest. It is such a moving and educational documentary.
Jennifer speaks for the “missing millions“; those of us who have had to drop out of life and may be homebound, like me, or bedbound, like she is.
She doesn’t have mast cell disease (that I’m aware of), but she does have a coexisting condition many of us with MCAS have; ME/CFS or ‘chronic fatigue syndrome’.
From the film’s website:
Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.
I wrote about it back in December and showed the connection between our mast cell disease, faulty immune system and ME. I had many of the symptoms of chronic fatigue syndrome which had me nearly bedridden for a while a couple of years ago, just before my diagnosis of mast cell disease. Symptoms that were thankfully (!) mostly alleviated when I started treatment for my MCAS.
Others, like Anne, aren’t so lucky.
**Warning: May be triggering**
Anne Örtegren had a severe case of ME/CFS and recently chose to take her life to end her suffering. She left a very long and detailed suicide note for us all, describing her indescribable pain. Telling us why she had no choice but to give up, (the poor woman couldn’t even wear clothes or sleep on sheets anymore for goodness sake!) she describes living a life very, very similar to that of a patient with severe MCAS.
From her last post:
No realistic way out of the suffering
A very important factor is the lack of realistic hope for relief in the future. It is possible for a person to bear a lot of suffering, as long as it is time-limited. But the combination of massive suffering and a lack of rational hope for remission or recovery is devastating.
Think about the temporary agony of a violent case of gastric flu. Picture how you are feeling those horrible days when you are lying on the bathroom floor between attacks of diarrhoea and vomiting. This is something we all have to live through at times, but we know it will be over in a few days. If someone told you at that point: “you will have to live with this for the rest of your life”, I am sure you would agree that it wouldn’t feel feasible. It is unimaginable to cope with a whole life with the body in that insufferable state every day, year after year. The level of unbearableness in severe ME/CFS is the same.
If I knew there was relief on the horizon, it would be possible to endure severe ME/CFS and all the additional medical problems, even for a long time, I think. The point is that there has to be a limit, the suffering must not feel endless.
One vital aspect here is of course that patients need to feel that the ME/CFS field is being taken forward. Sadly, we haven’t been granted this feeling – see my previous blogs relating to this here and here.
Another imperative issue is the drug intolerance that I and many others with ME/CFS suffer from. I have tried every possible treatment, but most of them have just given me side-effects, many of which have been irreversible. My stomach has become increasingly dysfunctional, so for the past few years any new drugs have caused immediate diarrhoea. One supplement triggered massive inflammation in my entire urinary tract, which has since persisted. The list of such occurrences of major deterioration caused by different drugs/treatments is long, and with time my reactions have become increasingly violent. I now have to conclude that my sensitivity to medication is so severe that realistically it is very hard for me to tolerate drugs or supplements.
This has two crucial meanings for many of us severely ill ME/CFS patients: There is no way of relieving our symptoms. And even if treatments appear in the future, with our sensitivity of medication any drug will carry a great risk of irreversible side-effects producing even more suffering. This means that even in the case of a real effort finally being made to bring biomedical research into ME/CFS up to levels on par with that of other diseases, and possible treatments being made accessible, for some of us it is unlikely that we would be able to benefit. Considering our extreme sensitivity to medication, one could say it’s hard to have realistic hope of recovery or relief for us.
In the past couple of years I, being desperate, have challenged the massive side-effect risk and tried one of the treatments being researched in regards to ME/CFS. But I received it late in the disease process, and it was a gamble. I needed it to have an almost miraculous effect: a quick positive response which eliminated many symptoms – most of all I needed it to stop my skin from burning and reacting, so I could tolerate the clothes and bed linen produced today. I have been quickly running out of clothes and sheets, so I was gambling with high odds for a quick and extensive response. Sadly, I wasn’t a responder. I have also tried medication for Mast Cell Activation Disorder and a low-histamine diet, but my burning skin hasn’t abated. Since I am now running out of clothes and sheets, all that was before me was constant burning hell.
As I read her describe her condition I couldn’t help but see the similarities between her disease and mine and wonder, what if? What if she had mast cell disease? It certainly sounds like it. What if she had found the right combination of mast cell medicines that didn’t have fillers or triggers? What if she hadn’t tried so many supplements and treatments that may have very well made her far worse (if she did have MCAS)?
It’s too late for Anne but we can all learn from her life, from her lesson. In fact, the same way Jennifer Brea opened her life up to us and gave us a window into her world so that we could see and learn from her, Anne wanted us to take something away with us from her farewell post:
The sad reality is that many of us will be like Anne and never find relief. We lose many from both of these communities every year.
I encourage you to hang in there if you are one of these who hasn’t found what works for you yet. There are so many different treatments and the most important thing to remember is to try to find the ‘cleanest’ medicines and foods (don’t forget the foods, they are so important!) you can find.
It’s also so vitally and utterly important to eliminate the hidden triggers in every single thing you digest, including prescriptions and supplements. I can’t stress this enough!
Relief is possible and it can happen, I promise – I am living proof.
I am still missing out on life, though. One of the missing millions. I hope to change that soon and as I am feeling better with each passing week there’s a good chance it will change, but there are so many who still need our help.
They need us to be our collective voice so let’s shout it from the rooftops for them.