A Trip Home in a Life I Love

18 Jan
Just a chair? Photo credit Pennywise via Morgue File

Just a chair? Photo credit Pennywise via Morgue File

This weekend I am travelling up to Lincolnshire to visit my parents and the house I still call ‘home’.

This is a big step for me. I haven’t been at home since last July, at a time when I was doing ME/CFS in a very genius way and suffering really badly with it.

I have spent large chunks of the last three years at home, too ill to fend for myself in the flat that I own with Mr B, the place that I also call ‘home’, in London. So there is a strong link between my home in Lincolnshire and doing ME/CFS for me. At home in Lincolnshire was where I was first diagnosed with ME/CFS, it was where I spent the first three months of the illness horizontal and mostly asleep. It was where I cried tears and tears as exhaustion and pain racked my body after simply trying to take a short shower.

Prior to ME/CFS entering my life, since leaving home at 18, my home in Lincolnshire was a place I loved to return to. It was a place to retreat to when I needed quiet time, be that to revise for University or Law School exams or for a restful weekend in the countryside with wonderful home cooking after a hectic work week in London. It was a place of solace that I loved.

And despite it being strongly linked to doing ME/CFS for me, it is still home and a place I love and I am so looking forward to returning to. It’s been six months since I was there, the longest period of time I think that I have been away in a long time, perhaps ever.

Even during the horrible horrible time of severely doing ME/CFS, I still enjoyed home. It was a bitter sweet time in a way. I loved that I had the opportunity to spend time with my Mum and Dad, which, had I been well and working, I wouldn’t have had. But on the flip side being ‘stuck’ (which is how it felt at the darkest times) in Lincolnshire served as a bitter reminder of my illness; I missed Mr B terribly and felt like I was missing out on life. Who would expect at the age of 26 to get the flu and become ill to such a bad extent that  3+ years later you’d still be recovering from the consequences? Certainly not me. It wasn’t exactly what I had planned for my life…

But I’ve always tried to see the positives in even the dreariest moment and so it is the same with my time doing ME/CFS at home. My parent’s house, my childhood home, was where I started a yoga practice of my own; which has been one of the biggest joys to emerge from me doing ME/CFS. Home was where I was looked after 24/7 without me even having to ask. It was where I watched the birds eat in the garden with snow on the ground; where I played the piano to relax; where I started this blog. And it was where Mr B’s love and care for me became ever more apparent as he week on week, month after month, made the 3 hour drive up the motorway on a Friday night to see me for the weekend;   even tho all I had the energy to do was to lie on the sofa and perhaps go out for a 10 minute walk round the village.

Yes being at home for so much of the last few years definitely had its up moments as well the downs. Looking back at it all now and contemplating returning there this weekend is slightly overwhelming and I do, if I’m on honest, have tears in my eyes as I write this.

Now I am so looking forward to being at home. After a while living in London I get a yearning for the countryside, clean air, trees, open space. I’m going for a week and it’s going to be so nice to be there and to be able to enjoy it; to be able to watch a film with my parents without having to stop it after 40 minutes because I’m doing very tired; to be able to pop to the local market town for a coffee and a wander (on my own two feet not in a four wheeled chair) without it breaking me and leaving me exhausted and with a pounding headache for the rest of the day; and to be able to go for walks in the countryside with my Mum without having a timer running ready to tell us to return home to comply with a highly limiting pacing protocol – tho admittedly I am still pacing to some extent but my boundaries are much greater, especially where walking is concerned – last weekend Mr B and I walked 2.5 miles! Not something I’m able to do everyday at the moment but just to be able to do it once without any adverse consequences other than tired legs in a good way (legs telling me ‘wow we’ve not been used like that for a while, need a little time to adjust!’) is still utterly amazing to me and something I don’t think I’ll ever come to take for granted, and if I do, you have my permission, someone slap me please.

I have been using the Lightning Process pretty intensely on going home to Lincolnshire. I have been breaking the old associations of being at home and doing ME/CFS and replacing it with me being at home and doing good energy, doing wellness and doing calm and happy. Each time one of the old associations has popped into my mind I have paused and done the LP on it. This way I’m interrupting the old  neuro pattern and building new much healthier patterns and neural pathways instead. And so my overriding mindset about going home this weekend is now one of positive calm and optimism. I am looking forward to it and doing things with good energy and wellness whilst I’m there. I don’t have that many plans for the week as resting and routine is still a big part of my daily life and necessary in continuing to rebuild and rehabilitate my body. But my Mum and I are going to a local spa for a day of pampering which will be wonderful. I’m looking forward to playing with my new camera with my Dad and letting his photography wisdom rub off on me (aim for the week: take camera off automatic mode! Start small hey?) and cooking with my Mum rather than sitting and watching.

The kitchen stool, an ME/CFS nemesis! Photo credit Jade via Morgue File

The kitchen stool, an ME/CFS nemesis! Photo credit Jade via Morgue File.

One final thing I’m particularly looking forward to is sitting on a kitchen stool and not a chair….this may sound very peculiar and trivial but it’s something that keeps popping into my head. I’m clearly still doing some stress about it so will be doing the Lightning Process on it lots in the next few days to brain rehearse me doing wellness and good energy and strength sat on a stool. When I was at home doing ME/CFS I was too weak to sit on one of the stools that sit under the kitchen table. So Mum and Dad moved a dining room chair into the kitchen for me. This eased the pain in my neck and shoulders as I had back support and it didn’t require me to have the energy to keep myself upright like the stool did.

In the very worst times of my ME/CFS I remember sitting on that chair and laying the top half of my body over the table as even sitting in a chair was too much; I needed to be horizontal. That is still a very vivid memory for me, but that’s a story for another post. The dining chair in place of a stool was the same scenario that played out in the latter years of my Nan’s life. In her late 80s and into her 90s Nan definitely deserved a chair! I’ve said before that doing ME/CFS has taught me new found sympathies for the plight of older people and so it continues.  Am I talking nonsense? Perhaps! Seriously though, very few aspects of life remain untouched and unaltered when you have ME/CFS, I guess that’s the significance of the chair instead of stool situation. It’s just one more example of how I am slowly regaining control of my body and my life rather than being ruled by ME/CFS. And it’s all thanks to the Lightning Process. At 29 years old I’m just very glad that I’m well enough to sit on stool!

I’ll be back later in the week reporting from hopefully a sunny Lincolnshire, until then hope you all have a great weekend 🙂


17 Responses to “A Trip Home in a Life I Love”

  1. currankentucky January 18, 2014 at 9:26 am #

    Enjoy your stay at home and the spa.. what can I say about the chair, only sit in it and let it engulf you!! xx

    • myjourneythrume January 23, 2014 at 10:08 am #

      I’ve gone back to the chair, stools are just uncomfortable! Hope you’re having a good week xx

  2. Jumping_Jenny_444 January 18, 2014 at 12:12 pm #

    You’ve definitely made some great progress! Hope the Lightning Process helps you out with your weekend and you can enjoy your stay at home. 🙂

    • myjourneythrume January 23, 2014 at 10:07 am #

      Thanks Jenn. I’m having a lovely time at home and it’s all thanks to the Lightning Process 🙂

  3. Megan S January 18, 2014 at 1:07 pm #

    Enjoy your trip, it definitely seems the lightning process is helping you a lot. 🙂

    • myjourneythrume January 23, 2014 at 10:06 am #

      Thank you and yes lightning process is really helping me, I wouldn’t be where I am without it 🙂

  4. Just Another F-Bomb January 18, 2014 at 1:07 pm #

    Enjoy your weekend “home”!

  5. thehomeschoolingdoctor January 20, 2014 at 1:41 pm #

    To think, grateful for a stool not a chair! Strange how much we take things for granted!

    I love going home to the family farm. Like you said fresh air, countryside. Simplicity. Love. Warmth. Nature. Space.

    I hope your next trip home SHINES!

    • myjourneythrume January 22, 2014 at 9:29 pm #

      Well I’ve discovered that stools are actually not that comfortable and I’m happily sitting on a chair whenever possible. My Mum says that our stools are quite little….I think she’s implying something about the size of my bottom….subtle as a brick my mum!! Hope your energy is picking up and you’re starting to glow 🙂

  6. E. Milo January 22, 2014 at 5:54 pm #

    So wonderful to hear, Jess. It’ll be great to make new, healthier associations with your home again and see your parents.
    You may have mentioned this before, but why do you say, “doing ME”? is this an LP tool? I’m thinking it’s to get you focusing actively on a certain state of being? I wish I could stop doing ME. 😦

    • myjourneythrume January 22, 2014 at 7:05 pm #

      Thank you Elizabeth, it is lovely being here feeling better than I have for years. Amazing really given how poorly I was when I was here last, just last summer.

      Yes you’re totally right ‘doing’ ME is an LP tool to concentrate your mind on the state you want to be / ‘do’. To do something (as opposed to the passive ‘to have’) involves active control which means you are in control of doing ME and so you can stop doing it.

      I’m not sharing my experience of LP to persuade others to go the same route, I think recovery and chronic illness are very individual, but I would say LP is what has stopped me doing ME.

      The founder of LP is Phil Parker and he’s published several books which are great at explaining the LP if you were interested in learning more.

      Hope you’re doing as well as possible, you’re often in my thoughts, especially at the moment reading my Seattle guidebook planning our trip!

      Jess xxx

  7. chris January 26, 2014 at 7:56 am #

    I’m impressed yet again. I apologise for not being too frequent a reader of your blog, but whenever i return I am fully amazed, most especially by your honesty and openness. Gorgeous. Your blog is inspirational to others, I can see.
    Look after yourself and enjoy cooking with Mum!
    xxx Chris

    • myjourneythrume January 31, 2014 at 9:44 am #

      Thank you for reading Chris and for your lovely comment. It really made me smile. It was so nice to talk with you and Alex the other day. It’s such a shame we’re on opposite sides of the world, but I guess that’s what Skype is for! Hope you are enjoying your new found freedom. xxx

  8. someonesideaofluxury January 31, 2014 at 9:17 am #

    Having a chuckle reading about the chair vs the stool, there is a bit of a hipster fad in my city where they have milk crates. I’m just not cool enough and need a proper chair 🙂

    • myjourneythrume January 31, 2014 at 9:39 am #

      I would definitely need a chair!! Milk crates sounds rather uncomfortable! Where are you? Just so I can be prepared and bring my own chair if I ever end up in that city!!

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