My body has been my frenemy now for many years and it is a relationship so hard for me to understand, and almost impossible for me to explain to others.

Depending on the day, the pain, the symptoms, the medications, the limitations and the disease progression I can feel a range of emotions towards myself that is often difficult for me to describe.

For example sometimes I feel so proud of what I contend with on a daily basis that I can barely express it in words. It has been my most remarkable achievement in life. Many people say “I don’t know how you do it…” and they are right. I don’t. But currently I don’t have a choice. I must manage whatever happens and be prepared for whatever ‘tantrum’ it can throw.

Someone once said to me “I think I would rather die than live like you…” I appreciated their honesty and I can certainly understand why they would say/think that. But I also don’t have much of a choice. You see, I have tried all the diet modifications, every internet ‘quick cures and quackery’ and have had to take on the ‘Big Guns’ in the medication world in order to try and calm this beast, but there are days in which I, and millions of other sufferers, wish we could just not wake up in the morning. Its hard to describe a war that will never end and harder still to imagine the future continually fighting.

Currently in this country there are no such law supporting euthanasia, so for those who live in constant pain and suffering we must either learn how to bare the pains or attempt to take ourselves out of the world through other means; which has so many complex and illegal ramifications that it is the topic entirely of its own…  “Is this how I want my life to end? No. I would rather not have to put myself or my loved ones through the pain of making such a difficult and currently illegal choice. It would also put my loved ones who supported my decision in great legal difficulty which is not a legacy I would want to leave for them.

Some days when my limbs are shaking, joints swollen, muscles weak, unable to see, pain off the charts, tears flowing, I feel an overwhelming sense of compassion for my body; like a dear friend in pain. I desperately want to console it, but I know that I am completely powerless over the symptoms and so I try and “talk kindly to myself”… assure myself that I am not alone and that I am very much loved. This is very hard to do some days, but there are days when I am filled with self compassion.

There are darker days when I feel a terrible sense of betrayal and anger at what is going on inside me, especially when I am so powerless to stop it. No drugs, no diet, no supplements, no meditation, no ‘positive cognitive therapy’ or no pain killers can remove the awful feels of ultimate and intimate betrayal that I feel towards the body that I have lived with all my life. We spend our entire lives trying to know and understand ourselves, and these diseases make that almost impossible. The unpredictable, strange, painful, embarrassing and frustrating nature of these diseases make it feel like an invisible enemy which haunts my bones, veins, nerves, organs and tissues.

Sometimes I feel that I am a stubborn student trying desperately to understand the lessons that my diseases are trying to teach me (and the world) about the importance of forgiveness, patience, humility, peace, acceptance and community. I try desperately to find the lessons and feel an responsibility to remind myself and others that we are more than illnesses and that our value is more than our physical abilities. I feel like an awkward, naive, pig headed and arrogant monk that is not listening to the ‘master’ and the lessons that are being played out inside my very existence. After all, haven’t all the great minds and the great leaders suffered for the knowledge that they have gathered? Doesn’t great discovery come with great sacrifice and effort?

There are also a group of people who like to say “I have a disease but my disease doesn’t have me…” Whilst I respect and appreciate their choice, I don’t exactly share the same logic and prefer to see my role as learning to accept and live with these diseases and enjoy the moments when it gives me the chance to enjoy something and then try and to accept when my illness takes charge. We SHARE. We try and understand each other. We both have needs and requirements that no amount of denial can put an end to. I have friends who are much more restricted by their disease activity and progression and for them they are permanently bedridden, severely disabled and require slings and hoists in order to move, I am sure they are not going to say “I have a disease but my disease doesn’t have me…” That’s why I personally prefer to learn how try and build a relationship with my diseases that is going to be more conducive to coping.

I am intimately connected to my Frenemy and I try to eat, sleep and live along side them in this tenuous relationship we have. On any given day I can look around me and see my life in my husband, my home, my garden, my friends, my home, my experiences and feel an overwhelming and indescribable amount of gratitude and then, on other days, I feel a burden so great that it crushes my soul and body into the ground. I could drown in the waves of agony and despair.  How will my body feel tomorrow? I can never truly know. But tomorrow is another story.

Gentle Hugs,

Trish