Sunday, 1 March 2015

55 things learnt from 5.5 years ill

5 years ago today, having been ill for 6 months, I was diagnosed with ME/CFS, which slowly went on to totally wreck my life, with some help from a few other conditions along the way. But I'm now rebuilding my life and am managing fairly well. My quality of life is relatively good, and I'm happy. Obviously I live knowing that a severe relapse is possible at any time, and I'm struggling a bit still with prolonged sitting up, so much in the way of walking and standing will have to wait, but things are definitely good in comparison to where they were.

What I've been through is pretty much documented on here. I've already mentioned the severe pain, the immobility, the loss of independence, the nausea that nearly resulted in tube feeding, the struggle to walk, the struggle to sit up, etc etc.

But that's not what this post is about. The struggle was, and is, horrible, but I've learnt a lot during the half-a-decade I've been diagnosed (and I know how ridiculously cheesy that sounds- I'll start calling it my 'journey' in a minute). Here's 55 things learnt from 5.5 years ill:

  1. The worth of a person should not be based on what they can or can't do, but who they are as a person.
  2. Every individual is important and their life, and quality of life, matters.
  3. The small things in life are worth taking note of- we're surrounded by amazing things every day; even when very sick and debilitated there are things to admire and be thankful for.
  4. The people around you are your greatest asset. Friends and family can be truly amazing.
  5. It's sometimes surprising who stands by you and who drifts off into the distance when things go wrong- the ones who stay by your side are true friends to be treasured.
  6. You can get through more than you would ever think possible. When you're given no choice, you can survive.
  7. Chocolate doesn't solve all your problems, but it does normally help.
  8. Music can be incredibly soothing.
  9. Bad times pass. Some times it just takes longer than others.
  10. Good times pass too, but it's important not to dwell on that- enjoy it while it lasts.
  11. Live life while you have the chance.
  12. Health is fragile, and precious.
  13. The true value of health can only be appreciated once it has been lost.
  14. There are still a lot of barriers to living life with a disability- both physical (e.g. stairs) and societal.
  15. Some people think you must be thick if you're on wheels.
  16. Lack of independence is difficult to tolerate.
  17. Some people take on new caring responsibilities incredibly graciously, others may be more begrudging at times.
  18. It is hard not to feel enormously guilty when reliant on others.
  19. It is possible to be happy and have fun even when feeling sick and in pain.
  20. Sometimes illness and pain gets you down, and you just have to wait for the dark cloud to pass.
  21. Being sick is tough; looking after someone sick is tough.
  22. Knowing when to accept help can be difficult.
  23. Taking a step back and establishing a slower pace of life is hard.
  24. Behaviour change can be incredibly difficult.
  25. Resting rather than fighting on is challenging.
  26. Any anniversaries or significant dates can be reminders of the passing of time and can stir up emotions.
  27. Accepting an illness is a constant battle.
  28. Pets can be the biggest comfort at times.
  29. Pets' love is totally unconditional- and they love you even more if you have food.
  30. Understanding that others in your life may well struggle to understand what life is like for you can be difficult.
  31. Once you are visibly disabled, some strangers seem to think asking whatever questions they like about your condition is perfectly appropriate.
  32. It can sometimes be difficult watching other people do things you can't do.
  33. Some doctors are absolutely amazing and work with you to manage chronic conditions, but some can be a nightmare once you're 'complicated'.
  34. 'Interesting' is not a word you want your doctor to use about you.
  35. Doctors don't have all the answers.
  36. Some medications cause more harm than good- it can be a battle to work out if meds are right for you, and if so, which ones.
  37. Random people suggest weird 'cures' frequently, and people often make harmful suggestions with the best intentions (e.g. 'it would do you good to get some fresh air').
  38. Some girls have a scarily lacking perception of what constitutes a healthy weight and will compliment your figure even when your weight is very dangerously low due to illness.
  39. The media can be frustrating and incredibly misleading, sometimes reporting dodgy papers, and ignoring real scientific advances.
  40. Patient communities can be surprisingly fractious- the ME/CFS community frequently insult one another over definitions and what to call the condition(s).
  41. Some people think wheelchairs/scooters are inherently a really bad/scary thing, but they can actually be very enabling and allow people to get out the house- admittedly wheelchairs can be very scary with the wrong person pushing!
  42. The majority of people really do intend to be helpful and really do want to do the right thing by you.
  43. Being ill results in lots of paperwork and letters.
  44. Asking for necessary accommodations normally results in feeling like a huge inconvenience.
  45. Fatigue can be at least as disabling and intense as pain.
  46. Dealing with the relentlessness of symptoms is challenging.
  47. Nights can seem to intensify suffering.
  48. During nights awake Internet-company can be very comforting.
  49. The shared understanding among, and support of, fellow-ill-people can be surprisingly helpful.
  50. Even if you feel alone, there is always someone else out there going through similar ordeals.
  51. Opening your world up to other people can be daunting at times, but can mean more people understand your story.
  52. Putting feelings into words can be surprisingly cathartic.
  53. It's important to rest before crashing; once it has happened the damage is done.
  54. Gentle hugs help.
  55. Ill health is clearly a negative experience, but positives can come out of it.
It's a strange year to reflect back over, because the emotions I've been through have been intense. It is so nice this year to not be looking back and simply seeing how much worse my condition has got though, because, for once, I've actually had 6 months of improvement, and am better than I was this time last year!!


  1. Great post Jess. I'm glad that despite all the rubbish you have learned that you can still be happy. And I'm made up that you have seen some improvements over the past 6 montha. Oh how true that is about wheelchairs being scary with the wrong drivers. Err hello I do have feet! My Mum pushed me into a seating bank the other day to busy looking the other way. I did cheekily get my own back by telling everyone how do you think I got in here in the first place.

    Hope the next 6 months are just as good.

    Sian xx

  2. So many of these points resonate with me Jess, this is so well written. Hope you're doing okay lovely, <3 xxx

  3. Dear Jess,

    I just (accidentally ;)) found your blog and your story reminds me so much of my own story that I had to leave a comment!
    I also fell ill with very severe ME in Nov 2009 (so around the same time you did). Had to take a very long leave of absence from university and focused on getting better. I had the best of all doctors, a German professor, and responded very well to his therapy of intraveneous injections. Nevertheless, in winter 2011 I was as bad as I have never been before (due to some major relapses). I was hospitalised where I got "my injections" daily, and this gave me the boost I needed. This plus an incredibly strict pacing plan let me make a full recovery over the following years.
    What you write about your past year sounds so promising to me! I truly wish you that your way back to normal life will continue as it does right now and one day you can look back and say: That's behind me now!
    Wish you all the best, Jess!


    P.S.: In case you would like to speak to me in person or wanna hear about my treatment, you are very welcome to contact me! I will follow your posts by email, so you should have my mail adress, right? (not sure about that ...) Otherwise leave a reply to my comment :D

    1. Hi Karin- I realise your comment was a while ago (I'm hopeless with comments- sorry!), but if you get this I'd love to hear about your treatment! My email address is
      Thanks! Xx

  4. Another great post, and I agree with every one of those points.

  5. I absolutely love this post! I'm new to blogging but just did a post on CFS/M.E ..

  6. Wow amazing ❤️ This is helping me so much ✨
    I'm also diagnosed with me/ cfs
    It's s really hard time right now but stuff like this helps me a lot
    Finally someone who understands me and has going through this

    Well I'm dutch so my English is not very good but I hope u understand

    Thanks for sharing this
    Hope u will feel better soon ✨✨✨

    1. Thanks for your comment, and I'm so glad you found my blog/this post helpful ☺️ I think it's important to share experiences so that no-one feels alone in this.. I hope things get easier for you soon! 💕 Xx

  7. Every point and lesson you shared, was and is and has been something I learned as well. The comforting pets note brought a tear and a reminder I would like another dog to help me through. I have been starting a new job and appreciate the reminder of a relapse...and as I say "the fatigue is real"!!