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.
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.
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.
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.
Sitting in paradise two thoughts really stuck in my head:
- I realised that now more than ever I take note of the small pleasures in life that the healthy me would have never noticed
- 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.