Stopping to smell the roses- Taking stock of living with a chronic illness

I have had this horrible condition (ME/CFS) for 2-3 years but looking back symptoms started way before.

At the beginning I started taking more and more days off work, before it getting so bad , I had to get signed off for around four months.

During this time I was predominately bed/house bound, unable to work, socialise and at the worst of it unable to get to the bathroom without the help of my parter.

I started making tiny changes that over time accumulated to bigger ones most of which I have talked about in previous posts, after my 4ish months off, I was ready to return to work as a tax adviser/accountant but not as I knew it before.

I started by doing 2 hours a week doing more simple tasks, building up 10-15% every 3-4 weeks only ever increasing if it felt right a year later I was working 3 whole days a week from 10-6ish as mornings are my worst time plus I miss rush hour for the most part. (Link: Phased return to work)

I worked 3 days a week for quite a while and really I felt that it was my limit, although at times by listening to my body I have had to reduce to 2.5 days.

Whilst building up my activity we (me, my partner,work and occupational health) not just focused on work but building up a rounded life meaning building in a social life, hobbies, work and most importantly rest.

By building up life a a whole it meant that I wouldn’t focus too much on one thing with the aim to making my recovery as consistent as possible and never pushing past the voice in my head that said (/screamed )

BAD IDEA , THAT’S TOO MUCH HANNAH! DON’T PUSH IT !!!!!!

Through this process and it really has been a process, have really taken stock off life. I have realised that life is not just about what you do and ambition is more than just getting that promotion or how much money you earn, but is about living stopping to smell the roses so to speak, before becoming ill my life was so rushed cramming in activities into every second of every day working hard and playing harder.

But now working 3 days a week no longer feeling guilty that I can’t do more (something that took quite some time to get over I might add ) I still have to rest and monitor my activity but I can appreciate the little things in life and I feel I experience things so much more as I don’t take things for granted which pre illness I realise I did far too often.

Now instead of working and partying, I :

  • Write a blog (obviously!)
  • Have become quiet creative, now an avid sewer, enjoy painting furniture and so many more crafty projects.
  •  Instead of clubbing I have dinner with friends and our house or theirs actually talk and laugh.

Before I got ill I loved traveling I would go somewhere exotic and do and see everything and never stop. I am very fortunate in my recovery whilst it has been very much trial and error and I still struggle and I thought I would never ‘travel’ properly again.

But……

Now sat on the sofa feeling like death I know that not to be the case. Yes I am in a crash but that is for good reason.

I am crashing right now because two days ago I arrived home after a massive journey home from Thailand that involved a boat, 3 flights and 3 car journeys.

Since becoming ill I have been on holidays, but they have all involved a flight of no more than a few hours and basically not leaving the hotel, going from room, pool/beach to restaurant, this holiday was different.

I have been to Thailand twice before and spent almost two months there six years ago, I really wanted to share my favourite country with my favourite person in the world.

Our trip began in Bangkok, I had a list of all the places I enjoyed previously so we could experience them together; we had an extra day and a half so thought that would make up for the rest I would need.

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Out of the 8 sights we went to 2. You would think that I would feel like this was a massive failure, but quite the opposite instead of running / tuk tuking around the city we sat in cafes/bars and people watched, ate amazing food and really took in the atmosphere (especially seeing as it was Thai new year) and I can say hand on heart I don’t think we missed out one bit.

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The rest of our trip has been on beautiful islands where I have had to for go the snorkelling trips in favour of lying in the shade and short bursts in the sun so I would get my quota of well needed vitamin D (AKA glorious golden tan) listening to my audiobook as I don’t have the energy to read but that’s ok.

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Sitting in paradise two thoughts really stuck in my head:

  1.  I realised that now more than ever I take note of the small pleasures in life that the healthy me would have never noticed
  2. Never loose hope that you will be able to do something you love again because with time and the necessary adjustments who’s to say it isn’t possible, this trip was case in point of this for me.

For a full list of my CFS/ME related posts check out my CFS/Me Index.

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17 thoughts on “Stopping to smell the roses- Taking stock of living with a chronic illness

  1. This is lovely, glad you’re having an amazing time on holiday.
    I’ve recently got a new job which is a lot less stressful, the people I work with are lovely and I’m slowly getting my life back on track working 15 hours a week.
    Reading things like this is reassuring, I’ve seen a definite improvement in my health and my mental health. Taking on hobbies is a must and like you said focussing on things that aren’t career or money motivated but wellbeing motivated are so much more important.
    You go girl!

  2. Fantastic post!!! ❤️
    I love good old fashioned PMA .. Positivity attracts only good .. You’ve worked hard to recover & definitely it seems improve your life .. Enjoy every moment! 😘

  3. A good work life balance is essential in life, too many people live to work instead of work to live.
    I applaud you on your incredible attitude 👏🏼

  4. I’ve been to Koh Phi Phi! Before I got ill though. It’s beautiful. So glad you were able to go back. I hope I can manage to travel and enjoy it again. It’s a dream xx

  5. Fantastic, well done. After nearly dying 20 years ago I’ve always said health is more important than money, but it does help. I’m glad you have done what you have done and enjoy your new life which is just as amazing as before you became ill.

  6. Completely agree with you on the soak it all in. That’s exactly what we did when we got away in March (chose to not do as many activities to follow my energy level) and even the kids kept saying it was their best trip ever because they got a better feel of the cities we where in!

  7. I’m less anxious about things I can’t change. I’m even more empathic of suffering. Take each moment at a time and just accept that I have no control over my health or my days.

  8. great blog…….too tired to respond much but exploring creativity seems to be a fairly common result (is that the right word?) of chronic illness. I’m in a fairly content state atm, though that could change at any moment! I’m done in for now but I’ll get back to you on more positives! Xx

  9. Thank you for sharing your latest post – I got ill about the same time as you and enjoy seeing your posts – have fun on your adventure!

  10. Having had to give up work for a while when the children were young made me realise there is more to life than work….one of my children said ‘I know you are I’ll mummy but it’s really nice having you at home’. Life rebalanced thanks to a chronic illness x

  11. Only positive I’ve seen is some good kind people in hospitals.

    The negatives I could write a book on and having severe chronic illness has not only been an awful life ruining experience but has made me much less of a nicer person so I’m not a positive case I’m afraid and tend not to view “CFS/ME” as contributing to my self development or an interesting lesson on life’s journey, I think that’s more for people shorter term and more mildly Ill.

    I get the point of the OP & think trying to take good from a tough time is a good thing so I wish you well.

  12. Excellent blog and resonates with my experience. As you say it takes a long time to not feel guilty about work but once you stop trying to get back to being the person you were it is ok

  13. This disease has taught me a LOT and I know that I’m a better person for it. I just wish there had been a different way of learning it! I’m a much calmer, more laid back person than I ever was before. I’m much more tolerant and accepting. I now accept that not everything can be done 110% well and that it’s even ok if some things are never done. (I’m trying to teach this to my husband now, without much success!) I appreciate the little things much more now and instead of focussing so much on achievement I think I focus much more on experience. The ‘old me’ still often surfaces but it’s much easier now to view my old way of being objectively. I do regret wasting so much time on work and career when I had boundless energy… If only I could go back in time and recalibrate my priorities then!

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