Fatigue - So tired it hurts

Fatigue is by definition a word to describe extreme tiredness or weakness through exertion or continued stress, which pretty much sums up one of the main symptoms of Endometriosis.

Tired of being tired? I know I am.

But its not just feeling tired, we are not simply a little bit sleepy, so as far as I am concerned the word 'tired' is far off the mark when it comes to describing that feeling when your whole body is in a total state of exhausted disarray.

So tired it hurts , not even sure where it hurts unless 'everywhere' is a place... and although sleepy (a side effect of some pain medications too) its not always easy to actually fall asleep no matter how much you would like to.

Fatigue is waking up and feeling like a herd of Buffalo used your bed like a dance floor, often there is nothing refreshing about 8 hours sleep , just literally a rude awakening. Somehow the blackness of a dreamless sleep is the only escape our conscience mind can find because once awake its the same old feelings of pain and fatigue.

Or maybe, its waking up feeling energised but as the day unfolds you feel like your being weighed down by a an enormous blanket, each step feeling heavier and more exhausting than the next.

Sometimes this symptom is most prominent just before, during or just after menstruation however fatigue can be a constant , day in and day out. Unmanageable and invisible.

Many women talk about having the occasional diamond day, where for no known reason pain and fatigue have taken a trip to the shops and their absence is deafening. Energy and optimism fills your body and your mind and you do do do; making hay while the sun shines. This is what is called a 'boom' of energy, and activity, that reminds you of what you used to feel like and what you wish you felt like again. However, with every 'boom' there is a 'bust' and over the following days the fatigue can come back harder and stronger like a jealous partner, furious at your momentary liberty and fighting to regain control.

The problem is not only the physical and emotional distress fatigue causes but also the lack of awareness surrounding fatigue as a symptom of Endometriosis and a total lack of support from a diagnostic and treatment perspective.

I can say this with confidence, based not only on my own intrepid experiences but also from the numerous encounters with women who have no idea that their Endometriosis is somehow linked with them feeling like their very life-force is being drained away.

Fighting illness, surgery (anaesthetic) , healing and medication including hormone manipulating treatments can put an enormous strain on the bodies resources, leading to fatigue.

Life does not slow down for those that fall ill and trying to keep up can exasperate pain and fatigue, pushing ourselves past our natural limits; mostly because we don't know where our new 'Endometriosis' natural limits are.

So what can we do? how can we manage fatigue medically or otherwise?

Firstly its important to let your GP know about fatigue, as there can be several other underlying health conditions which could cause this symptom, we often forget to consider that there could be more than one culprit post-diagnosis and linking in with medical practitioners will build a history and allow for further explorations. It could be worth discussing secondary conditions such as CFS/ME and Fibromyalgia which in my experience often follow on from long-term chronic pain conditions, especially those in women aged 30+.

Its important to look at lifestyle and consider both mental and physical changes, as our bodies may need a more sympathetic and endo-friendly approach.

Pacing ourselves, thinking about limits and not over-doing things especially during times where symptoms are worse will give your body the best chance of avoiding big flare ups.

Ensuring hydration, optimum nutrition and gentle regular exercise are fatigue-fighting actions, not cures necessarily, but certainly good practice choices to shelter ourselves from the oncoming storm.

Acceptance is key, taking time to acknowledge the now, to not take blame ourselves for how we feel but instead listening to what our bodies are saying and live a more mindful life.  This is a process, not something you can do over night, but a journey that can be painful as you let go of some things you really don't want to and accept the 'new' way of living.

I think of it a bit like a filter, the 'Endo-filter', which I now remind myself to apply to my plans.. things may seem achievable and realistic on paper but when that filter is applied I can often see that I'm doing too much and have given myself little chance at managing my symptoms. I might say yes but my filter says no no NO!

Fatigue is real, its debilitating and it can take the sparkle away from the shiniest of diamond days and it is my belief that a more proactive approach needs to be taken upon diagnosis by asking the question  "and do you suffer from fatigue?" 

This is why support groups are so valuable because without meeting others you often do not realise that the way you feel is not uncommon for women with Endometriosis. Many women have arrived at meetings totally unaware that there was a 'name' for how they felt and that it was a key symptom of Endometriosis, they left the meetings feeling like their world made more sense and ultimately more bearable.

Stealing a quote used recently by a renowned Endometriosis Specialist, "Endometriosis may not kill you, but it can destroy your soul" Powerful words that many will unfortunately relate to.

Thank you for reading my Endometriosis Blog, here is a poem to leave you with called 'Dear Body' that I wrote only a few weeks ago when I woke up one morning and felt overwhelmed by the pain and aching of my body.

Michelle

Dear Body

Why do you turn against me?

Was it something I said?

You betray me when I need you,

people thinking it’s all in my head.

I don’t want to keep on fighting you,

I remember a time when we were free,

but it seems the more I try to,

the less there is left of me.

Please body can we try resolve this,

Can’t you ease a little pain?

Can we get back to the beginning?

Or will things never be the same?

You know I've tried everything,

But it makes no difference to our ends,

All I want is us to be in harmony,

Though I fear your will, it never bends.

Dear Body,

It must be something I failed to do?

I have carried the blame for far too long,

Or a curse handed down from distant hand,

Or a past life that went terribly wrong!

My mind can’t make any sense of why,

I am in pain every single day,

Why my strength is leaving my once supple hands,

I never wanted things to be this way.

So body, please just talk to me,

tell me what I can do,

white flag is raised high into the air,

I surrender in my war with you.

Michelle Middleton

Endometriosis Support Group Leader

www.endometriosissupportgroup.co.uk