Chronic Illness, Health, Life, Life Lessons, My Story, The Present

Fried On Friday 13th

I have always struggled with the concept of rest days.

Rest days, quiet days, self care days, relaxed days, couch days

Days spent lazing, sitting, lounging and lying. Hours passed with reading, knitting, watching TV, sleeping and staring into space. Days where things like cooking, exercising, balancing finances and leaving the house never progress any further than a nagging thought in my mind.

But today, I have rested. I have sat, read, watched TV, been for an extremely small walk and stared into space. I have only done small amounts of household tasks such as laundry, drying dishes and closing windows and curtains.

Today, in the middle of my fifth year living with chronic illness full time, I think the penny has finally dropped. I have come up with a definition for rest days that my mind seems relatively accepting of. That definition is:

I will allow myself to do a lot less today, in the hope that I will be able to do a little more tomorrow.

Yup, that’s it. A line that I have come up with to explain to myself why resting is necessary, and an essential part of my life.

So next time my mind is playing havoc with me and telling me that I’m a bad person for resting or taking it easy, I’ll roll out my comeback and see what happens.

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Chronic Illness, Health, Life, My Story, The Future, The Present

The Rise and Fall…

The past few days have been really good in my world. Nothing particularly out of the ordinary has happened – work has been average to slightly annoying, and life in general has been complex and ever shifting.

I think what has really made the difference this week is that I’ve been in a really good mental headspace. I don’t know why things have been better in my mind, and I don’t tend to have any control over how my headspace is on any given day or week. But I’m always really, really glad when my mental health takes a turn for the better, whether it’s for a few hours or a few days. When things are good, I feel so much more clear-headed, it’s easier to practise gratitude and interact with others around me, and to deal with struggles and things that tend to crop up without warning.

Today has been a totally different story though because… I’ve crashed. The positive headspace is gone. My normal day to day level of fatigue has risen about 500%. It’s all come crashing down around me like a house of cards destroyed by the gentlest breath of wind.

Living inside my mind is once again an unpleasant place. I’m frustrated, short tempered and backing away from the ones I love. I’m dealing with massive fatigue, as well as associated sensory overload symptoms. I just wish that the good patches could last forever, but they never do.

But no matter how my day is shaping up, I need to remember this –

Healing is not linear.

The goalposts are constantly shifting. I don’t ever truly know where I stand, and how long the good patch will last before the rug is yanked out from under me once again.

This is life. With chronic illness and mental health issues, the changing landscape is even more painfully noticeable. The impact that even the smallest change in my home, work, health or social life can have is scary, if I stop long enough to think about it.

At the end of the day though, what is most important is to try and maintain a sense of self love, kindness and self compassion. To try and take care of myself each day, and work within and around the boundaries and constraints that I’m presented with.

One day, one hour, one minute at a time.

Chronic Illness, Family, Health, Life, My Story, The Present

Seasons Come, Seasons Go

I’m in a difficult season at the moment.

There are so many things in my life that I desperately want to hold onto, but somehow I’m going to have to let them go.

It’s so hard, almost like parts of my mind are tearing themselves apart just thinking about it.

I’m mentally and emotionally wrestling with loss in many parts of my life.

I’m kind of comforted tonight by a song, which I thought I’d share here.

Here it is – ‘Let It All Go’ by Birdy & Rhodes.

Blogging, Chronic Illness, Life, My Story, The Future, The Past, The Present

Why I’m Staying, and Why I Write…

So, it’s the answer you’ve all been waiting for…

I have decided to stay blogging here.

It’s thanks to a lot of thinking on my part, and also to the lovely Where Are My Pillows?  for her comment and provoking even more thoughts in my mind.  Also thank you to all of you who have reached out to me, and shared your thoughts.  The whole public / private blog thing appears to be a topic that quite a few of you have considered yourselves, so in a way it’s nice to feel like I’m not alone.

So, why have I decided to stay?

Well, I did some soul searching and tried to figure out why I started to blog in the first place.  Truth be told, this isn’t my first blog.  The blog that you see now has emerged and grown from what was originally a very small homemade blog on Blogger, that I started back on Monday 1st September 2014.

Back then, I was in my first year of living with chronic illness full time.  Understandably, I was searching the internet and trying to find blogs and info from other people my age who were living with similar issues.  I did find a few, but not as many as there are now by any means.  Because I didn’t find a lot, I decided to start writing so that maybe I could be ‘that blog’ for someone else who was new to the chronic illness journey.

I thought ‘if my words could reach just one other person who was struggling and feeling alone, then that would make it worthwhile for me to know I have made a difference in someone’s health journey’.

In my thinking on whether to make this blog private or not over the past few days, I opened my ‘Drafts’ tab in WordPress, and scrolled through the thousands of words that didn’t make the cut.  The attention grabbing title that never had a post to go with it, or the few sentences typed to capture an idea that never eventuated.  There are nearly 200 posts in that ‘Drafts’ folder of mine, and it put me in a solemn state of mind.

There is currently a house being demolished near where I live.  As it gradually comes down, more and more of the underlying structure is being revealed.  The beams, wall board, concrete blocks, broken bricks smashed and lying in the dirt below.  This house that took so many months, different kinds of materials and various tradesmen collaborating to build, is being torn down in just a few days.  All of that hard work, all of that time, just gone in a cloud of dust and trucks full of rubble.

 

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Seeing the constantly changing landscape as this house is being demolished, has left me with a vivid mental picture of what it could feel like if I turned my blog from public to private.

All of those posts gone.  All of the thoughts, the words, the mountain of drafts would just disappear from the public face of the internet.  All of the time I have invested over the years would shrink, as with a private blog I would predominantly be only writing for myself, and the few people who already know I exist and what my writing is like.  As some of you pointed out, having a private blogging space would potentially discourage new people who discover my blog from following me, because they would have to sign up to do so.

Don’t get me wrong.  I am not someone who is sharing my writing to see how many likes or followers I can get, although I appreciate everyone who follows me and seems to like what this ordinary girl taps out on her keyboard.  Which brings me eloquently into my next question…

Why Do I Write?

Asking myself this question is a bit like asking anyone why they breathe, or why they eat breakfast in the morning and dinner in the evening.

I write because words pour out of me from time to time.

I write to download the mental load of the day / week from my brain.

I write to free myself from thoughts spinning round and round inside my head.

I write because phrases and ideas come to me, and they pester me until I write them down somewhere.

I write to share my own experiences, in the hope that it may help someone else.

I write for so many reasons…

I write because it feels good, and so for now I will stay, and keep writing when I can for as long as I can.

Yes, I do struggle with my words being out on the internet for all to see, but I will try to put that to the back of my mind, and trust that those who come here to read what I write will be kind.

See you all soon when the writing bug strikes me again,

C xx

PS –  www.colouringinmylifeblog.wordpress.com 2018.  Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited.  Links may be used, provided that full and clear credit is given to www.colouringinmylifeblog.wordpress.com with appropriate and specific direction to the original content.

Blogging, Life, My Story

Going Dark…

Right, time for an honest chat with you, my lovely followers.

I’m thinking about possibly making my site private, and it only being visible to readers who ask to see it, and I then approve.  I’m not entirely sure why I’m contemplating this (either temporary or permanent) change to my blog.  Perhaps it’s just because I’m feeling quite fragile at the moment, and am not sure if I can handle the idea of my thoughts and words being visible to the entire world right now.  I just don’t know…

So, what I want from you my precious readers, is to hear whether you still want to read what I write?  And also, would you still consider following me if you had to apply to be a reader, and then I would accept you and you would then see all my posts etc?

Equally, I’m open to hearing from readers who have had similar thoughts themselves, and what your experience was with either making your blog private, or leaving it public in the end.

If you still want to hear from me, then please either like this post, or post a comment and let me know if you’d be happy to apply to be allowed access (you only need to do this once) to read my posts.

Thanks lovelies.  I hope you understand why I’m thinking about (haven’t made up my mind either way as yet) making the change from a public to a private blog.

C xx

Chronic Illness, Family, Health, Life, My Story, The Future, The Past, The Present

Around The Dinner Table

Two nights ago, my family and I were sitting around the table, as we do every night, having dinner together.  I had a tiny bit of energy that night, and so the conversation was flowing and I was taking part in proceedings, which I often am not able to due to fatigue, pain, headaches, low energy etc.

What I found curious was that after dinner and the next morning, the male members of my family were commenting on how talkative I had been.  The fact that they were making a big deal out of this seemingly normal human behavior got me thinking…

They were discussing my contribution to our dinner table conversation as if it was some kind of ‘once in a millennium’ event.

My thought patterns led me to pondering whether me taking part in dinner table conversation is really that rare of an occurrence.  To be honest me taking part isn’t rare (or at least I don’t think so), but probably that night I had been significantly more talkative than usual I guess.

I suddenly wondered if maybe my immediate family had forgotten how I used to be.  Perhaps they couldn’t recall what I used to be like when I was normal, and before I got ‘sick’.

I thought in my mind ‘have my illnesses really changed me that much?  Has my sense of self become so eroded by my physical symptoms and the impact that chronic illness is having on me, that I have become unrecognisable to those I love?’

Woah!  Scary thought!  Although, it’s even hard for me to remember what I was like pre 2013 / 2014, so how can I expect my family to still hold on to the memory of how I used to be pre-illness?

I guess for those of us that live with chronic illness, how we go about our daily lives changes so much (drastically in some circumstances), and so it’s no surprise that there may be changes to our personality and the way we interact with others.

I’m not sure if it’s the same for you, but I don’t tend to dwell on my pre vs post illness in terms of personality and temperament much at all these days.  The things that play on my mind most are related to what I can achieve physically, and the limitations my current state of body and mind impose upon me.  I don’t really examine what may have happened to my personality or anything like that, as it just doesn’t occur to me or seem important to assist me living day to day.

Only when something like ‘the dinner table incident’ happens, does my mind tend to dwell on how different I must be now.  That sometimes I must be difficult to be around, or appear to have less spark than I used to.  That who I am now must be galaxies apart from who I used to be before my life imploded thanks to chronic illness.

All I can do about these potentially massive changes to ‘me’ is try to accept them, live with them as best I can and embrace this ‘new self’ that has been formed due to my circumstances.  Even so, it still is a little scary to think that I have evolved into a different self than I was before.

Do you ever think about how much you have changed?  And how much the events and experiences of your life may have changed and shaped you?  Let me know in the comments below!

C xx

lmc
I’m not often a chatterbox, but a few nights ago it seemed I really was ‘Little Miss Chatterbox’!
Chronic Illness, Health, Life, My Story, The Present

When Life Is An Unmade Bed

Ugh, my life is such a mess at the moment. I washed my sheets today, and seeing all my bedding sitting in a messy pile on top of my mattress really reminded me of my own life and how so many parts of it are untidy and fragmented. I’ll expand a little on just a few of the things that are tricky for me right now –

  • Exhaustion. That deep seated tiredness where you don’t even feel tired any more. Instead you just feel completely empty, as if you’re a shell and there’s nothing left inside.
  • Having no idea how to improve my physical health. When I get as exhausted as I am at the moment, I feel slightly unhinged because I just don’t know what to do in order to make myself any better. Deep down, I know that resting and doing nothing are the best things for me to do, but I just feel so useless when I’m resting.
  • Guilt. Because I’m in such a deep dark fatigue related hole, of course I tend to blame myself. I don’t seriously consider that the fatigue may be a consequence of one of my illnesses, as that would be too logical. Instead, I make myself feel even worse by blaming myself for causing this increased fatigue in the first place. I analyse what I have done recently, and try to work out what I have done to bring this upon myself.
  • Worry. How am I going to get through this? What can I do to help myself? Etc etc etc. I can be very hard on myself, and generally when my physical health is low, that is when my mind really goes to town and starts torturing me full pelt!
  • Work. I have cut a day from my work commitments, so I am now just starting to work only 2 days each week. This has been extremely hard to come to terms with, but the honest truth is that I’m just not coping working 3 days per week. I’m just not.