ChronicallyMe

I’m having an odd week.  I think I am mentally, emotionally and physically tired.  I had another run of terrible gastric pain and my trouble sleeping has continued.  I think it’s taking it’s toll.

Through ME/CFS Awareness Day I read so many stories of people with ME for years and year.  9 years, 10 years, 15 years, 20 years, 35 years …

I know I believe, from what I have read (and read extensively) that ME is not cured.  It can go into remission but you’re never completely free of it.  I don’t want to believe this - I want to believe I have something that can be fixed.  But no, 95% of what I hear and read and feel is ME is an illness that never totally leaves you.

Somehow I manage to pin that belief on all sufferers except for me.  Until this week - when it finally rang in my head that I may never never be rid of this illness.  I might achieve remission and maintain hope.  Hope of remission, hope of treatment, hope of a cure.

So I have this thought in my head and it’s creeping into my heart that I’m always going to battle with this.  I’m never going to have a clean bill of health again. 

It’s infinitely easier and more possible that I will get worse than better simply because I only need a small window of stubborness and/or stupidity to worsen my health.  And I want to scream and wail and let go.

I am not ready for this idea.  I am not able to think it can be true.

I’ve always thought “One day I will go for long walks again”, “One day I will cycle all day”, “One day I will spring about with energy and ethusiasm”, “One day I will be able to do all those jobs around the house for my mom”, “One day I will have that fitness freak phase I always promised myself”.

This does not sit well withe the idea that I will always have ME. 

I can only hope that remission will allow me these freedoms. 

But for now I can only try not to think about any of it too much.

You would think that not being able to have a bath or wash my hair without some help would be enough to bring home the reality I face living with a chronic illness.  But I can tell myself that if I only tried I could do it on my own - besides this is a one off, and this one, and this one …

Or that perhaps having lost my job through ill health and having had ten months straight off work sick would be enough to bring it all home.  But I can tell myself that if I had only tried harder I could have gone back and done some hours …

But when I opened the fridge door this evening to get milk for my hot chocolate (well, middle of the night really unable to sleep - but that’s a different blog) I saw absolute proof of where I am at in my life.  I didn’t recognise anything in there.  Our fridge packed with packets and pots of interesting food was a stranger to me.

It started early on in my illness with not knowing when we needed to buy milk.  Growler took charge of being chief milk monitor.  Slowly my solo food shopping trips stopped altogether and not much after that I stopped going with Growler to “help”.  There are better ways to use valauble energy than have it sucked out of you in a supermarket if you can at all avoid it.

Now I have no idea what is in my fridge, no clue what is in the cupboards, no feel for the routine and the familiar of my kitchen.  Growler is an expert in stocking all my favourite things, all the things that are good for me and all things suitable for a fussy tummy day.

Isn’t it strange how something so simple can illustrate a vast shift in my life?

One of the the ambitions I hold now (those overcoming illness ambitions) is to cook Growler a meal again.  I mean a good meal without collapsing afterwards, to be able to enjoy it.  One day.

I also have ambitions to be able to walk or get to the local post office - a 10 minute walk, by myself, under my own steam, safely.  Oh and make it back too!  Also, much more ambitous - to ride my bike again, or to have an electric bike and be able to go for a ride in warmer weather with Growler.

But I think cooking a meal might be the first milestone from that list!  That’s providing I can pre-order familiar supplies for the fridge.

Oh - the good news is that all the staples still live in the same places in the fridge.  So finding the milk was straight forward.  At least I haven’t completely lost it.

I can’t get to sleep.  Another transient insomnia attack.  Sigh.

I haven’t written much about work since I’ve been sick.  I’ve avoided any details of my situation with just about everyone except a couple of friends, my husband and my parents.

My current period of absence from work due to ill health runs from mid December - so that’s nearly 10 months now.  Work have been in touch asking to set up a meeting with Occupational Health to look at “timescales” with regard to my return to work.  It’s routine stuff - but it’s NOT MY ROUTINE so it feels disruptive.  I can’t help but look at my work situation with a letter like that hanging around.

I am incredibly fortunate in many ways.  I’m financially sound (even though my wages ceased in the summer) thanks to the hard work and support of my husband.  I know not everyone is in such a good position.  You’ll have to forgive me but this might even help to know that even where money is not a factor this kind of stuff is still not easy - so you’re not alone if you struggle with it.

I’ve been reluctant to talk about work because I don’t want to risk muddying things with my employer.  I want to blog freely and vent some of this from my system - but it’s not sensible right now.

The union are making enquiries of my behalf about possible voluntary redundacy or some kind of deal.  Which they are doing with my blessing. 

But the reality that I could soon by unemployed feels both wonderful and terrible. 

Wonderful to be free of the worry about work would be a huge relief.  Free to get on with life and try to find ways to work and earn in the future that are more flexible to my fluctuating health needs.  Not worryng about timescales or letting anyone down or having to answer to anyone about whether I am better or not.  Being a person first and foremost.

Terrible to have no status - to be unemployed - to have lost my job through ill health.  To be a statistic of another employee turned unemployed by CFS and not have been a shining exception to the rule.  To somehow not be strong enough to have fought this illness off and not have it dictate my life decisions.  To have a working life ended, after fighting so hard to get to a good job and a good wage that made me proud.  To fade away and never have the opportunity to beam at my colleagues and tell them I am leaving my job for something even better.  To have failed somehow.

It’s a huge transition.  It’s totally new terrain.

I have had a fierce sense of independence for all my adult life.  Now I find myself reliant on someone else.  And in the back of my mind scared to death what will happen if that is ever gone.  Will I ever earn a decent wage again?  A wage to live your life by? To support your family with?

Will I ever be well again?  Will I ever go for long walks?  Cycle?  Work eight hours a day?  Take things in my stride?

Will I cope with just being?  Not having a working label or status anymore?

When people ask me “And what do you do?” what will I say? “I’m accomplished at living a tiny life with pain and fatigue.  And you?”.  Well, that would require the energy to go out and meet new people in order to be asked - so perhaps no need to worry on that count.

Which tick box will I tick in the future? Or do I (like my husband said) draw my own tick box on the form?

I’m by no means an authority but it struck me as interesting how different people cope with chronic illness if different ways.  I don’t just mean emotional and practical coping strategies - I mean how they invest their energies as a result of having a chronic illness.

Let me illustrate with examples of folks I’ve come across via the web:

Become an activist - Jodi is a bed activist who started her own web site about M.E. to try and give others reliable information about this illness and bring about change.  Although she can’t do much in her day to day life she still finds time to devote to her activism because it’s so important to her.

Become a role model - Jenni started a blog about how it was possible to be chronically ill and a babe at the same time.  As it grew into the sire that is now ChronicBabe she became a role model for other young women knowing they too can face the challenges of chronic illness and still be beautiful, happy and fulfilled.

Search for medical answers - for many a chronic illness diagnosis is vague and little is offered in terms of treatment.  Diagnosis X is still searching for answers as are many others.  Some have a firm diagnosis but either challenge their treatment or search for new treatments.  I have found more lay people with amazing knowledge of medical research and treatments for specific conditions than I could care to mention and their search for answers amazes me.

Hide your health problems - well, it’s not fair to actually name people in a post like this when they’re doing so much to hide their chronic health conditions!  But they exist, they talk quietly and only to a select few about their illness - to the rest of the world they seem able and fit.  Some blog anon, some probably don’t even speak of it at all. 

Find a cure and share it - some people develop their own methods of treatments and “cures” for chronic conditions and then set out to share them with the world.  Some do it freely, others make a little money, others make a lot of money.  I’m not naming names as I don’t want to seem to recommend treatments.

Denial - it’s not happening to me.  For many of us we go through a natural phase of denial as part of coming to terms with our chronic illness.  It persists longer for some than others.

Commit to alternative therapies - challenge your energy into exploring and often re-training in alternative and holistic therapies.

Publicise / fundraise - make it your mission to educate the world about the chronic condition you suffer from and/or take on challenges big and small to fund support and/or research into the condition.

Take it as it comes - those who trot along dealing with their illness on a day to day basis and changing priorities as things shift and change.  Some days they greet the world with cheer despite their illness, some days they hide away, some they write letters and emails to anyone who will listen. 

Live a normal (ish) life - knowing your illness and yourself live a life that is relatively normal - quietly going about your business.  Perhaps (often) changes and adaptations are made to life and working arrangements but their chronic illness is not the loudest or most important aspect of them - especially to those outside their close circle.

For those interested I think I fit a lot of these at different times!  Mainly I am currently “Take it as it comes” with aspirations to live a full happy life and inspire others to do the same.

I know there are more ‘models’.  I know that many of these overlap.  I know I did a sucky job of illustrating  examples with links you can go and explore yourself.  I know that my ‘models’ are over simplistic.

I’m not even sure what I set out to say!  I think I’m interested in how some embrace their illness and make a feature of it, some kick up a fight with all they have, some just get on with it and appear “normal” and others quietly get on with it but illness dominates their lives. 

Some of this is not down to choice I realise.  Some are luckier than others in the level of suffering, the support around them and maybe even with their strength of character. 

I suppose when we’re healthy we’re all different and being chronically ill doesn’t change that.  It just sometimes changes our focus a little.

POSTSCRIPT:

There’s another ….

Forget about labels - and do it your own way

Recent attempts to figure out my life with CFS:

1. Make a list

2. Think of things to put on my list

3. Remember the reason I need a list is because I can’t think of things

4. Realise I’m not sure what the list is (things I am, things I’m not, things I can do, etc)

5. Get lost in the thought (numbers 3 and 4) and forget to start a list

6. Repeat numbers 1-5

Eventually …

decide that

7. It’s ok to not know for now

8. Bumble along for a while

9. Sudden panic about life, role, identity, purpose, future … go to number 1.

If you had asked me prior to ME/CFS I wouldn’t have said I had a life plan - at least not beyond being happy.

Chronic illness can put a different focus on life and all the details within.  I found out that I had more of a plan that I thought - it just took having all these obstacles in the way to see it.

Silly thing is that chronic illness doesn’t neccesarily make what I want from life vastly different to before - my plan A was broad brush strokes and feel my way.  But it does bring things into a sharper focus, making me evaluate and prioritise in order to survive.

I’m not sure it’s good enough for me to take a “we’ll see” attitude to starting and raising a family anymore.  I’m 34 this year and time is rolling by, but my level of debility hasn’t changed much in the last 8 months.  I can hardly look after my own day to day needs let alone a childs.

Same with career.  The “one day”mantra, which used to sound so carefree has a defeatist ring to it these days.  I don’t have the energy or health to burst kick-ass into a new blossoming career and to Make Things Happen. But I reckon that’s all the more reason to get started now.  With a little by little, gently does it approach it’s going to take a lot of time to build any momentum. 

And you never do know what’s around the corner.  That’s one lesson I have certainly learnt.

I have the same broad brush strokes about happiness, love, career, security and family in my Plan B even if the details are a little different.  Now I seem to be looking at it all from a very different perspective, a chronically ill perspective.  I don’t know when or if I will be any better, or even any worse.

I feel I have to start making choosing some goals, deciding to leave others and shuffling slowly towards the achievable. 

I’ve never been very good at choosing, for fear of making a mistake.  But if I don’t I fear the prizes will slip away altogether.