Thursday, 9 April 2015

Advice from a friend of a friend

My Dad is a keen cyclist, he spends many weekends out cycling with his friends, often clocking up 30 or 40 miles.  He's a MAMIL if you will (Middle Aged Man in Lycra) and I like to think he's having a merry old time.

Soon after I had to return home from university due to my M.E, my Dad went for a ride.  He got talking to one of his friends whilst lagging at the back of the group, and said "my daughter has just had to return home from university due to her M.E." his racing friend replied "oh I have M.E. you wouldn't know now, but I still have to be careful".  My Dad was so shocked and couldn't believe it.  You may be sceptical yourself, but Dad became convinced after talking to him for a while and I really do think that this man has the same disease as me.  Even though I hardly have the energy to walk around my house and spend most of my time in bed, and he climbs mountains and cycles for 30 or 40 miles at a time.  Mad you may think, but he's not trying to claim there is a secret cure.

There are a few bits of information that he passed on, that have helped both my Dad and me in the last few months.  One is that M.E. is definitely a physical illness, you cannot dictate what you want it to do, how much energy you will have, or pain you will be in.  You must respect it for what it is, and most importantly of all it is absolutely vital to follow the body's lead.  No amount of positive thinking or alternative therapy can help it, you cannot rush recovery, or even know when/if it will happen.  All of these things made me convinced that Simon has the same illness as me, because these are truths that I have come to know in my own life.  It was good to hear them from someone else though, because they are so easily forgotten - if only other people would say them too.

One day I'll get back to the hobbies of a 4 year old me!

The best advice he gave me is that "coping isn't enough" I think that's going to be one of my new mantras now.  For so many years I have coped, and people have said oh how well you are doing, you are coping... but if you are just surviving, just getting by you are not living, and most of all not going to recover.

All health is fragile, and shouldn't be taken advantage of, our society idolises the idea of pushing our bodies to their limits and living life to the full, seeking the thrill.  This is not helpful to those who suffer from M.E. or any other chronic illness to that matter.  The key is pacing, avoiding toxins e.g. food intolerances, and lots and lots of rest.

My Dad says that come to think of it, his friend does often have days off from work and misses cycle rides due to being unwell.  This shows that even though he has got to the point where he can climb mountains, Simon still has to keep his health in check.  He is by no-means fully recovered, but has got to the point where he can manage his health, and has a pretty good quality of life.

It is important to remember that not all M.E. behaves the same, some people find that their health deteriorates no matter what they do, and others cannot improve.  However for those of us who do find that we are able to build on our health with rest and pacing, here is a smidgen of hope!  For more on what I've written about M.E. see here.


  1. Lovely post -so nice hearing/reading the thoughts and feelings of others who are going through the same thing! xx

  2. Thanks Jamie-leah, I always like hearing from people who are older and have come out of the other side of what I'm going through! I hope that you have a good day today! :)

  3. Smoothie Spoonie11 April 2015 at 13:18

    Jenny it's so good knowing someone that has shown ME who's boss. I know a couple of people personally that have done the same with ME, although they still need to pace themselves at times. But don't we all! Thanks for sharing this post I enjoyed reading it. It's post like these that give us sufferers hope that we will get better.

    Lennae xxx

  4. Thank you Lennae, I'm glad that you liked the post! I have never really known anyone in real life who has beat ME before, everyone else I know who has it is still struggling on. The problem is that there is a major lack of information out there, and so many doctors give harmful advice! I'm glad that you have some people in your life who have recovered. It gives us all hope to hear these stories, and hope is exactly what we need! I hope that you have a good Sunday! xxx

  5. That man sounds very wise! I don't have ME but I can apply what he's said to my own illness. I so agree with what you say about it being good to hear someone else say about following your body's lead etc. Most people, mainly those without any kind of chronic illness, don't understand why people with a long term chronic illness don't appear to be pushing themselves towards some kind of recovery or drinking green juices to cure themselves. So you end up trying to force yourself too much or forgetting that a chronic illness isn't something like a cold that you can just get over, which is why it's nice to be reminded of how it actually is sometimes by someone else. I'm glad this man has inspired you, by writing about him I'm sure he'll inspire others too! x

    Josie’s Journal

  6. Yes, it is so good to hear
    other people tell us what is right, because so many people don't get it and try
    to make us do 'miracle cures', that you and I know just don't work! I honestly
    think that most of the time gut our instinct is best, it is just so hard to
    listen to over the noise of everything else! Thanks for commenting! :)


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