M.E. and Me

I have M.E.

This means so many different things to so many different people. Trying to explain an illness/disability that does not manifest in a way that people can understand. I equate it with trying to explain the differences between a 747 and the Dreamliner. Some differences are glaringly obvious, and some are not at all easy to see. And before you ask I have a big interest in aviation, hence the plane comparison.

M.E. can be mild to severe, and its sufferers can be mostly fit and healthy or house and bed bound. There is no rhyme or reason to how this illness hits a person, everyone is different. There are common symptoms most sufferers have, but then there a multitude that may or may not be present in everyone who has M.E.

Let me give you a bit of my illness. Up until about mid 2013 I was fairly healthy; I had a few issues that get to all of us as we age. In August of 2012 I had a major surgery, three weeks later, after coming home from the hospital and doing quite well, I developed a pulmonary embolism.

Now I thought, oh wow, I dodged a bullet. I thought that the embolisms that went to the heart or brain were the really dangerous ones. It was not until several weeks later that my doctor told me only about 5% of people who get a P.E. actually survive. That was a major wake of call for me.

The embolism damaged a good portion of my lungs, but I could live with that. About a year later I started having issues, primarily being tired all the time. My doctor did all sorts of exams and sent me to specialists, to no avail. We were stumped as to what was going on.

I then started getting weakness in my legs, pins and needles, and becoming forgetful, amongst other things. I then had an issue with choking, but thankfully a lady at work was able to administer abdominal thrusts and dislodge a bit of food. I was even choking on saliva. I googled these symptoms and an article on M.E. popped up.

Reading the article which gave a list of several symptoms associated with the illness, I was amazed as I ticked nearly every box. I went to my doctor with this, who was reluctant to label me with this illness, because of the negative connotations within the medical community, as well as the general public.

However, they did take it seriously and set about trying to rule other issues out. My doctor finally decided that M.E. was likely and started to try to set in place a treatment plan. They sent me to our local hospital for a formal diagnosis.

This is where I first met with the lackadaisical attitude of the medical establishment to M.E. The consultant, who was supposedly the M.E. specialist in our health trust, started my appointment by saying he was happy to speak with me, but as he had no clinical interest in M.E., he would be sending me back to my GP. He did talk to me, and sent a report to my GP saying that my symptoms were consistent with M.E., but in essence my GP and I were on our own.

So we plodded on. In June of 2015 I went to the hospital having difficulty breathing, only to be diagnosed with a clot in my leg. I was given a clot buster and sent home, to return in the morning to see if the clot was dissolved. It had dissolved, but the same day I had word that my stepfather, who had been previously diagnosed with prostate cancer, was suddenly so ill he was not given long to live. He asked to see me, and I flew over to spend time with him, which turned out to be our goodbyes.

Whilst seeing him, I began to experience further problems with my all my extremities, which at first I put down to the stress of what was happening in my family. But the issues did not go away and actually increased in severity. Within 6 months I lost my stepfather and I lost myself.

When I say I lost myself, I mean it literally and figuratively. I lost abilities and mobility to a certain extent. I lost a lot my independence and control of my life, even the control of myself. In this short time I have gone from a mobile and independent person to walking with a stick, having to use aids and assistance to perform everyday tasks; someone who can’t remember something in the short distance from the bedroom to the kitchen.

I don’t look sick, and if you saw me you would only think I have problems walking. There is so much that is not visible. My life has changed so much from the person I was to what I am now, it is overwhelming at times.

The most difficult things for me have been the loss of independence and the isolation. I have not been able to work for nearly three years. I have faced people saying it is all in my head, I should be able to push through this, that it is not as bad as it is, or it is not a real illness. I would like to bash them all in the head with my walking stick and tell them to get bent.

I do not want to be told that I am not as bad off as Cousin Fred or that Auntie June had the same illness but she got cured. I am sick to death of people telling me what will help lessen my illness or that I just need to buck up. Because they have no idea of what my illness encompasses, and most of them don’t want to know, I am now persona non grata.

When I started saying no to people, they could not be bothered anymore. It is funny how you can be called upon to listen to people’s problems, or help them. But when you ask for help in return, suddenly they cannot be there. It certainly opened my eyes, not only to my illness, but to the people around me.

So there, now I have laid out my illness and also my anger.

I have been told by several people, my daughters, my parents, and by people in my medical team that I should write a journal or a blog about my experiences, not only with my illness, but with my experiences in life, past and present.

So here I go.