“If Only I Didn’t Have ME…”

2 Replies

Living with an Illness ME Personal Blog

When life throws you a curve ball, it's so easy to get stuck in the "if only I didn't have ME" cycle.
A few weeks ago my life took a crazy turn when the guy I was living with effectively ended things and asked me to move out. It took me a week or so to get packed up and moved out and I left last week on 26th August. This is a meaningful date for me anyway as it is my ME-versary. This 14th anniversary of the day I became ill was definitely my darkest and there were a number of things I wanted to write about a week ago, but I really was just so emotionally and physically spent, it’s taken me this long to be able to put together some thoughts. In my day to day life, I rarely think about being ill; it’s just the way things are and I get on with my daily activities (or inactivity as is sometimes the case) as best as I can, limited health and all. But it has been so difficult not to get caught in the spiral of “if only I didn’t have ME” these past few weeks.

Back in 2009 when I met the person I had been living with, I was relatively healthy and active, as I was experiencing a brief respite in the severity of my symptoms. But in 2011 I experienced a major relapse and while I have not become as ill as I was prior to 2009, I haven’t exactly been a social butterfly either. So when he cited my illness as one of the reasons he wanted to end things, I honestly could not blame him. He is turning 40 soon and is dealing with his own mid-life crisis. He wants to be more active and to do things that I guess remind him that he’s not old and past it. Having a ME ghost haunting the house can severely cramp one’s style, and I have really been very ill this past year.

Then there’s the issue of what I do now and where I’ll live as I am effectively penniless and homeless. I could move back into my parents’ house, but everything in me is against doing that. It seems like too much of a regression; I am no longer the same person I was when I lived there before. But the fact remains that this illness does severely limit the work that I do. While I work full-time hours on my writing and blogging, I am not financially solvent and so cannot support myself fully. I have to admit that this has been the cause of the biggest upset for me. There were some very dark hours when all I could think was that I will turn 40 in January and yet I have nothing. I have spent the last 14 years hampered by this illness and those were meant to be the years I created and formed my life.

However, it’s not all doom and gloom. As ME sufferers, we are all too familiar with how many relationships (friends and even family members) fall by the wayside the more ill we become and are less able to interact with others. But I have been very lucky and I have people in my life who are here with me. My mum has been amazing, both in supporting me emotionally and in almost single-handedly helping me to move my belongings out. Then there is my best friend Ami. I’ve known her since we were in nursery school together. She came and got me on that last day and I have been at her house for this past week. This is despite some pretty major things going on in her life at this time too. There are other people too; my sisters and a cousin who have been offering me help in every way possible. So while I may not have much in the way of possessions, I have love and support. It is so much more than I could ever hope for.

I’ve been nursing my wounds and getting my bearings, but I will need to formulate a plan soon. For the time being I am a vagabond and totally dependent on the goodwill of my friends and family. The self-recriminations could come so easily at this time. If I was strong and healthy, perhaps I would be in a much better situation, but perhaps not. After all there are so many people in the country who, for one reason and another, are in the same boat as me. A quick glance at the news shows people who are in even worse situations than what I am in. So while I could easily be swept away in an ocean of depression and self-pity, instead I choose to be grateful for the angels in my life at this time and to look to the future. I do have one; I just need to decide what I want to do with it.

Before I wrap this up I just want to explain the image that I used for the quote. I took that when I was on one of my walks. I was so grateful that day to be able to walk, to just be alive and to be living in such a wonderful part of a city that I love. I may no longer be there, but I am grateful nonetheless.

Do you ever have “If only I didn’t have ME” moments? What gets you through those dark times?

  • Sasha Nimmo

    Having one today, and probably the same things that get you through too: gratitude for what I do have and knowing it could be worse! Relating to others (like reading this!) helps too.

    • Jay

      Thank you! I’m the same; while I don’t wish this hell on anyone else, knowing there are others out there who can understand and are in the same boat really does help so much.