ME/CFS, Being Matt, Chorniclife

The human body is simply amazing. What we as humans are able to endure never ceases to amaze me. Growing up as a healthy child, I never realized or understood this innate power we all have to survive. I was healthy and life never seemed to get in the way of who I wanted to be. However, at the age of 20, that all changed. It all started with severe digestive symptoms. I remember feeling like I constantly had food poisoning. I was often bedridden for days on end. I would lose 15 pounds in a matter of days and then struggle to put that weight back on over the next month. At that same time, I also started to experience a fatigue like no other fatigue I had experienced before in my life. I used to work out for several hours a day so I know what it feels like to drain yourself of energy, but this fatigue was different. It was far more severe than anything I had ever experienced before and it would not get better with rest. I liken it to the feeling you get when you are extremely sick, minus all the sick feelings. So if you could take away the sore throat, the runny nose, and the fever, you would be left with a feeling of being drained. That drained feeling is what this fatigue is like, but 100 times worse. And then there is the brain fog. There is nothing like feeling like a space cadet all of the time. I always have a very low-grade headache and a feeling like everything I am experiencing is being run through a filter.

 Over the past 8 years I have dealt with all of these symptoms to varying levels, but at the core they have all remained. They have made simple everyday things extremely taxing for me. School has had t0 be a very part time gig for me. It took me 10 years to get my bachelor’s degree. And even with my part time schedule, I cannot count on my hands the number of times I had to drop classes or completely drop out of school altogether. My ability to work has been reduced to very simple part time jobs at the best of times and a complete inability to even hold the most basic of jobs most of the rest of the time. I have lost many friends and barely socialize with the ones I still have. In an attempt to regain some of my old life, I have done everything from going to the Mayo Clinic for several months, to working with things like acupuncture and nutrition as medicine. And while I have found a few diagnoses like Celiacs Disease, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and IBS (Irritable Bowl Disease), which have helped manage some of my symptoms, I for the most part still have no idea why I am feeling the way I am feeling and what to do to fix it.

This has been a major life event for me and has changed me to the core. Before all of this, I took life for granted. I defined myself by the things I was able to do. If you asked me who I was when I was 18, I would have told you that I was an athlete because I climbed, biked and was always active, That I was a good friend because I was always out doing something social with friends. That I was independent because I worked, went to school, had my own apartment, and paid bills. And most importantly I was happy because I had and did all of these things. When that was all taken away from me 8 years ago, I lost everything that is associated with the identity of who I thought I was. No more working out, no more social events, no more school, no more work, no more independence. Relearning where I fit into this world and what my identity is over the past 8 years has literally been the hardest thing I have ever had to do in my life.

Through all of this craziness, I have started to realize that I have been given a gift; the ability to deal with the loss of what I thought was my identity. In that space of learning this gift I have started to learn who I truly am. And that is why I am creating this blog. I want to share with anyone who wishes to listen, the experiences and lessons I have learned that make me who I am today. I want to give the gift of what I have learned back to others in similar situations. I want to help other people physically, emotionally, spiritually, psychologically on their own journeys.

It is so important for us to realize the impermanence of all aspects of our lives. Anything that can be taken away from you is not who you are. Everyone loses their abilities at some point in their life because everyone gets sick and everyone dies.  So it is not the things we do in our lives that define who we are, it is what we learn from the circumstances we are given that defines our true identity. Live the life you’re given.

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17 Comments

  1. Hi Matt! This is totally random because I saw this post through a friend’s Facebook and honestly had to read it! I just have to say, “bravo”! I myself struggle with health issues – currently undiagnosed – and I know how hard it can be on you physically and emotionally. From personal experience, I feared people finding out about my “problems” which has made me feel secluded for many years. I also, have to say thank you because it’s brave people like you that make us all realize we aren’t alone. Also, I have wanted to start my own blog about my struggles and maybe seeing this post at the exact moment I did was a sign. Keep trucking random stranger! I hope the mayo clinic gives you the answers you deserve!

    -Caitlin

    1. Hello, Caitlin! It is never random. I am glad you said hi. I really encourage you to start your own blog or reach out in some other way. Publishing this blog has been one of the more freeing things I have done.

  2. Thank you Matt for giving us a new perspective on this “wicked” monster called ME/CFS. I am a single mom of a beautiful 8 year old daughter and I’ve been on this journey for 13 months now. All that you said was extraordinarily helpful and the very last comment “Live the Life You are Given” truly has meaning now. When we were “thriving” and healthy and living out our “dreams”, we did not understand what this actually meant. How could we? You have put into words something very powerful for all of us to latch onto as we continue down this path we never imagined ourselves on. Good job, my friend and comrade. You are doing a really good thing for yourself and all of us.

    All the very best.

    With gratitude,

    Jennifer
    (Durham, North Carolina, USA)

    1. Thank you for the kind words Jennifer. They really mean a lot. This was hard for me to put myself out there in the open for everyone to see, but I am so glad I did. I have received so much support for kind people like you. I am glad my word have meaning for you. The sentence you quoted has been my mantra the past month or two.

  3. Hi Matt, you described what it feels like exactly right. I have been struggling with this illness for 26 years. I will never give up as long as I have breath. Today was a relatively good day so that is what I focus on. I look forward to reading your next post.

    1. Thank you, Laura. Glad to hear you that you had a good day today! And like you said never give up.

  4. Hi Matt your exactly like me for the past eight years I have been suffering and wondering why (37-45), I’ve visited my doctors had many procedures, but pretty much the all say the same, it’s all in your head, to CFS, ME, fibromyalgia, IBS ect…eight years ago I was sleeping 20-22 hours per day, feeling exactly like you explained above….i lost 20kg in around 6 weeks. 3.5 years ago I took an offer to move to China and start a new life, in the back of my mind I was hoping to find a cure for my illness through true Chinese medicine, but nothing much at the moment…. Although all the Chinese doctors agree my symptoms are caused by DAMP… What happen when something get damp, mold… So fungus… Well another chapter of my life is about to start…. On Monday this week I was told my contract is being terminated, I was offered a job back in the UK but I really don’t want it…. So now I need to try and start my own business in China… Over the last few years I have put on 35kg in weight I’m now around 20kg overweight… Pretty much stomach pain, fatigue, headaches and mustle pain everyday… Now I lost my job I hope to try and get fitter, hope this will help me fight this shit…. Before I was working 8am-6pm so never had any energy for exercise…. So any advice you have to give I’m interested to listen! I’ve not tried FMT I’m interested to try if I could find a donor…. One interesting thing is I was in hospital with pneumonia for 12 days three times a day IV antibiotics, I left hospital with serious brain fog and fatigue, but my stomach feel very good for the next few weeks, gradually the stomach pain return and the brain fog went away (although never completely)

    1. One other thing around four years ago I took Lufenuron an antifungal not approved for human use…its a pet product, I do think this improved my life a lot… Although still far from perfect

  5. I commend you for your strength in putting yourself out there for all to see. You have an ability with words that leaves the reader with a full comprehension of what you are living, day to day. Your wisdom about life is beyond what one would expect at such a young age. Hardship tends to do that, especially with individuals who grasp the true meaning of life, that we grow through our soul with intangibles, and not totally through our external life feeding on tangibles and hoopla (what I call false sensationalism, idolism of the rich and famous…)

    No one is spared the highs and lows of life. I’ve had my share, but in the last few months I have had to deal with circumstances which I would never have thought were possible and it has been a heart wrenching struggle. Your words have given me some comfort, for reasons I don’t fully understand, and for that I thank you.

  6. So proud of you, Matt! I hope that starting this blog is helpful to you. I find it very inspirational and I’m sure it’s extremely helpful to those that struggle with similar issues. I also hope you find comfort in knowing that you have a huge support system behind you. I guess “one day at a time” is probably a good approach to take. Hope today is a good one!
    Sending you much love from Illinois,
    Cousin Deb 🙂

  7. Hi Matt,
    I can’t say I know how you feel because I don’t have anything that challenges my health in any way that isn’t basically self inflicted i.e overeating and drinking and/or throwing myself into something strenuous with far too much enthusiasm and not enough consideration for my age!! I don’t suppose there is anything that I can suggest that you may not have already considered either from the medical profession or your own search for answers. Mr Spock would say logical thinking would presume that there has to have been a catalyst.

    Prior to November of 2014 I would have read your intro blog and thought, “Well, this guy has seen the top notch medics and they’ve come up with the probable diagnoses so they’ll help him work out the best plan for living with his problems”. In November 2014 I watched a video that set me searching for information on what we put in our bodies on a daily basis. The regular stuff that we pick up on the supermarket shelf without a second thought and in the firm belief that, although some of it may rank on the naughty scale because it’s a treat rather than ‘wholesome’ food, it’s all good and keeps us on our toes and able to go about life in the normal way and when we’re not great then the medics will soon sort us will a potion or pill. But that video and subsequent reading made me realise that we are surrounded and bombarded by stuff that our bodies were never meant to process. In the name of convenience and expedience we are losing sight of what our bodies really need to function properly and stay healthy. And when we are unwell, the pills and potions can have far worse side effects on us than the symptoms they are suppressing. There are great foods out there that are convenient and expedient and there are great drugs out there that are needed and do what they need to do, but we are allowing so much into our systems that disrupts our natural function. The video I watched was called “One disease: One solution” by a man called Jason Vale and even if it doesn’t fit your needs, it is a very interesting film and makes many valid points about food. There are a raft of conditions out there that didn’t exist a couple of generations ago so we have to consider that we have put ourselves in harm’s way somehow.

    Reading this back makes me sound like a bit of an environmental raver! I still shop at the supermarket and I still drink and eat chocolate, I don’t follow some wildly restrictive diet and everything is on the menu, but over the past year I have slowly changed the way I choose what I eat and drink. Do I feel healthier? Yes. Have I lost weight? Yes. I didn’t need to lose a lot but without those few extra pounds the exercise and yoga I enjoy is a bit easier. People do notice that I’m always well and cheerful.

    I sincerely hope that you can find your way to being well. If not to your previous peak, then at least to a time when you wake each morning feeling well enough to enjoy your day.

    Good Luck

  8. Thank you so much, Matt. I like what you said about seeing it as a gift and learning who you really are. I’ve been dealing with similar symptoms for the last 15 years off and on, started in my early 40’s. About 6 months ago I was sitting in my bath crying in pain and exhaustion thinking I just can’t do it anymore. I knew I needed to change something….and the only thing I still had control of was my thinking….this was happening to me whether I liked it or not so I needed to start finding gratitude, accept my situation and try to find new ways of experiencing joy in my life. Reaching out to others who understand, sharing our experiences, really learning pacing (that’s been very hard)….. I was a very active, driven, get’er done kind of gal….now I do water color paintings, writing, slowly starting to swim a little…hoping someday to get back on my mountain bike trails….but if I can’t that’s got to be okay too….I’ll just keep looking for what I’m meant to do. What you do helps so much and gives me strength of mind to keep going.

  9. Dear Matt,

    I am currently facilitating two research projects in the UK on supporting recovery from CFS, and we are having a great deal of success; people are recovering. These projects have been funded by the National Institute of Health Research, and by Health Education England, in other words the National Health Service, so it’s properly validated research being done through universities (Southampton) and local Health Trusts in Oxford and in Dorset, using qualified clinicians to work alongside me.

    The projects are both built around a pilot programme we’ve called Reinventing your Life. This was a collaborative venture involving recovered and non-recovered patients, clinicians – an MD, occupational therapists, and later the Dorset ME/CFS Support Group ,with me doing the facilitation and creating the programme. It was based on work I’ve been doing for years involving performance coaching applied to health and well being. It has involved modelling the recovery journeys of those people who have succeeded in coming through this horrible dis-ease and then successfully reinventing themselves and their lives.

    Your blog is wonderful; as you say, there is a lot of learning involved in living with and through such a devastating dis-sease. I wonder if there may be ways in which my group, the community that has set itself up around this in Oxfordshire, might find ways of sharing learning with you?

    Much love

    Sarah

    1. I would love to connect and share with each other. What is your email? or you can shoot me an email though my contact page on the website. Look forward to setting something up and talking more. -Matt

  10. Hi Sarah,
    How do people get involved in research programmes. I live in Gloucestershire UK, and have fibromyalgia, and my husband also has it as well. Both been on various medication, and none really seem to work, which is so hard as we have an 11 year old daughter who has to watch both her parents change so much and in constant pain with severe fatigue. Do you know if and when anymore research programmes will take place and if so how would we be able to go about maybe being considerd for any future trials. We are both in our early 40’s and just cannot accept that this is it for us. Any information would be very much appreciated.
    Look forward to hearing from you. Keep up the excellent trials you are involved in and maybe one day a break through for these diseases may be found.
    I will live in hope.
    Kindest Regards to you and what you are trying to achieve.
    Angela Barr

  11. Hi Matt!

    Very much relating to this post, I went from an extremely fit and active female in their early twenties, teaching dance, working, going out to gigs and parties, to experiencing extreme fatigue and then being diagnosed with a chronic illness earlier this year (AIH) and it has totally turned my life upside down.

    Learning to redefine yourself and let go of the old you is hard, but damn we must look tough as nails to everyone on the outside who has health on their side 😉

    Looking forward to reading more of your blog!

    Take care of yourself!
    Maddison Grimes

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