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.

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.

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

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.
Chronic Illness, Health, My Story, The Present

How I Feel

Head spinning
Dizzy waves taking over
Streams of thoughts
Mingling in crossover

Body sweating
Panic on the inside
Exhaustion is winning
Overtaking the tide

Limbs heavy
Precarious loading
Each weighing down
Lanky and foreboding

® All rights reserved by C, the original author. Please do not copy or reproduce in whole or part. Thank you.

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

I Don’t Know How To Begin

Basically, I’m disappointed.  I’m not sure what annoys me more right now – my body, my state of mind about this subject, or just the universe in general.

I had excision surgery for my Endometriosis pretty much bang on 18 months ago.  I had a fantastic Specialist who still takes care of me now, and I would trust them with my life.  They always have my best interests at heart, and have worked so hard to get me well.  So I’m definitely not annoyed with them or their care, because it has been exemplary all the way.

Since that surgery 18 months ago, I have been more well from an Endometriosis point of view than I had ever been before.  In fact, since that surgery I have probably felt the healthiest from a Gynae perspective than I have for… um, about 8 years?  Yes, that surgery and the after care really did make all the difference for me.  Granted, I have been using medical management as well since the surgery, and that has taken a bit of experimentation to get right, but still having excision surgery has been one of the best things for my health.

Over the last 2 months though, all of my hormonal symptoms that are related to my Endometriosis / Adenomyosis have gradually come flooding back.  The pain, increased bleeding, nausea, fatigue, bloating (also known as Endo Belly), acne etc – it’s all coming back to haunt me.

I don’t know how to feel about this to be honest.  I feel a bit like I’ve been cheated by the Universe, because I felt so well that I had this tiny hope in my heart that maybe I would have many wonderful pain and symptom free years ahead of me.  But sadly, that hasn’t turned out to be the case.  I did have a pretty awesome past 18 months though, so at least I have the memory of that to hold on to.

I have truly appreciated every moment of good Gynae health that I’ve had over the past 18 months, especially since it has taken so long to finally find relief.  But to have it all suddenly swept out from under my feet again is, understandably, difficult to process.   To have to go back to my Specialist and say ‘what now?’ was heartbreaking in a way, because the thought of having to start all over again and trial new treatments is quite daunting for me.

It’s not as if I don’t have enough defective body parts that I’m currently trying to manage and deal with, without having my pelvis thrown in on top of the pile once again.

For now, I have started a medication that will switch my hormones off altogether, just to give me a break from it all.  It’s early days with that, so it’s just settling in and hopefully it won’t disagree with my body too much.

That’s only a short term thing though, so it’s what we do after that which is going to count the most.  There’s the potential I could go back on my old meds that worked well until recently, and see whether my body is happy to stay under their spell once I’ve had a kind of ‘hormone reset’ with this short term medication I’ve just started.

If that doesn’t work, then who knows?

My Specialist has said they’re not ruling out the possibility that I may need further surgery at some point, but I’m trying not to think about that too much at the moment.  It’s not that I can’t handle surgery and the recovery required (because I know that I can), it’s more the mental side of having to put my broken body through yet another surgery.  Knowing me, if I do have another surgery then I’ll be thinking ‘how long am I going to feel well for this time around?’, but of course that’s a question that no one knows the answer to.

At the end of the day, I just have to take things one step at a time and live in the moment as much as I can.  But some days, it’s just really really hard to persevere.

There are times when I feel like as soon as I ‘fix’ one thing and get it under some semblance of control, another symptom pop up or another body system starts showing signs of wear and tear.  Often it’s like a challenge to see how long you can manage something before it starts to flare up again, and requires modifications to treatment, or in some cases totally new treatments altogether.

Honestly, I’m not really sure why I’m here today.  I just need to spill something out of my brain so that hopefully it throbs less inside my skull.

If you’ve made it to here, then thanks for listening.

C xx