Feeling Totally Useless

My mum has severe tonsillitis. She lives on her own. And because my immune system is screwed up thanks to ME/CFS I can’t go and see her. I can’t run over there and help. I don’t even have the energy to go and make her a cup of tea, heat some soup or fetch a prescription.  This is not how life was supposed to be.

Yesterday my dad took me out for an hour. I asked to go to a nature reserve nearby. He pushed me around the lake/pool in my wheelchair and even though his pace was fast I could hear a slight wheeze in his breathing.  We passed a couple about the same age as him with a pushchair containing a small child – I presume their grandchild. I hung my head in shame. My dad shouldn’t be psuhing his 35 year old daughter around on a sunny autumn afternoon – he should be feeding the ducks with his grandchild.  A grandchild that does not exist and may never exist is ME/CFS continues to beat me.

I tried hard to get to a point where I was earning enough in my job to have a comfortable life (ie. not having to scrape by every month) and where I could save and one day know that I could support my parents if they needed it.  That as they got older I could offer them a little help if they were in a tight spot.  Now the only income I have is from a small government assistance meant to help me with my care and mobility needs. I can’t work. I don’t earn.

Whenever my mom had a problem around the house if I could help fix it I would be the first there. My brother isn’t the practical kind and my eldest brother is absent 364 days of the year on average.  I would be the one to decorate, move furniture, fix a fuse, strip carpet out – get stuck in and get the job done.  I’d be the one to take the afternoon off work as holiday and drive 30 miles to take my mom to a hospital appointment.  Now I’m struggling to get myself downstairs to my own sofa.

Postscript: Growler says it’s good to focus on what I do have. A dad who can take me out and spend time with me, a mom who is able to live alone and a brother who is as we speak over there visiting her and taking supplies. To focus on the positives.  I’m trying to do so. 

It’s like being hit hard all over again by that grieving for who I was, what I had and what lay ahead.  Grieving for a future that hadn’t happened and being struck by one that now might and how different they look.  That life isn’t turning out how I’d wanted – and we’re not talking fancy cars and houses, we’re talking simple basics of ability and function.

I can’t say I’m able to wrap up the grief and the pain easily.  But as ever, with a supportive partner and family and friends, I can try to shift my focus slowly around to be thankful and positive, not dwelling on the fears and the grief.

Who I Am Now, Who I Was Then

After my mother-in-law and sister-in-law were asking some questions about how I am and how my illness impacts on my life it made me realise that I still measure who I am against who I was.

My definition of who I am is a reduced version of who I was, like before but not so active.  But I still measure how I feel now against a benchmark of where I want to be, which is based on where I was before.

Maybe this is too confusing for the ME brain ;o)

See I realise I am still hoping to recover to 75% or more of where I was before I got ill.  And that I expect that to happen within the next 12-18 months.  That would be within 4 years of being ill.  This is not an expectation which is at the forefront of my mind – it’s something quiet and buried deep down.

On the one hand I am pleased I maintain the hope. On the other I wonder if I don’t recover to this expectation will I go through another level of grieving.  I think it’s a case of dealing with whatever the outcome is when it happens. 

But it’s the first time I’ve realised I am still holding on to that initial picture I was given that “most people with CFS recover within 4 years”.  The evidence for that statement is flawed yet I hold on to the hope.

I also realised that I do not fully embrace who I am right now because I still measure against who I was before my illness and, in turn, who I want to be again.  Or rather the level of physical function and health I was before.  I’ve surely moved on as a person in these 2 plus years.

So I wondered – is it a problem that I do not define myself in the now, for who I am now, for what I am capable of now?  And I don’t think it is a problem. 

I’ve read plenty of advice that says you must accept but you must maintain hope. 

I think I do accept, mostly accept, but I do have times when it all hits me again like a blow to the stomach.  Like when last night I was so tired but needed to clean stuff up (womens things and not something I can ask for help with from my husband) and just a few minutes later I was utterly exhausted and in pain.  I could have sobbed I felt so helpless and crushed by this illness.  Fooled into thinking I was a little better and then stripped back to pain and headache and exhaustion from a few minutes at the wash basin.

I can see that not fully accepting and embracing my current level of capacity makes for these moments of shock and upset when I realise I am unable to do the things I always want or need to.

BUT wouldn’t accepting these current limits as who I now am make it incredibly difficult to do more when my health improves?  Maybe it is a better way – that I would wake up one day in 6 months time and discover I can go for a walk to the corner, I can stand and wash up the dishes, I can spend a few horus reading a book without it making me ill.  To see a bigger increase in health rather than the drip drip increase (often two steps forward one step back) approach I have now.  This is all assuming that I will continue to improve of course.

But what struck me is that most people are defined not just by who they are now but by who they have been.  A healthy adult is not just the job he does and the activities he does now – he is also the person who played football at 11 years old, studied for his exams as a teenager, went out to rock concerts in his 20’s. 

We don’t ordinarily ditch the parts that made up who we once were – so why should we do that as chronically ill or disabled people? 

Why must I let go of being the woman who would always step up to help with the physical work, to re-decorate the house, to paint a canvas with intense energy, to cycle and walk for miles without thinking about it. The woman who read into the small hours of the morning rather than put the book down, to attack the gardening with shears and power tools, to work extra hours, solve problems and explain complex ideas simply.  Who would chat for hours to friends on the phone, to listen and to be there when a friend was needed. The girl who had dreams and believed she can charm the wind and talk to dogs and was as alive in her imagination as in the real world.  Who wrote stories and wanted to drive trucks and thought boys toys were better than dolls.  These things are still within me and part of me.  I’m not going to deny them. I’m not going to shut them away.

What we need is not a new beginning as a person with a chronic illness.  We need to learn how to live fulfilled and happy lives within the limits we have and still be alive, in our hearts, with all the things that have made us who we are. 

To balance the life we dreamt of with the life we have.  Because everyone has to do that – ill, disabled or not.

One Day I Will …

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.

My Fridge Contents Are A Mystery

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.

Work, No Work and Tick Boxes

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?

Chronic Ill Models of Behaviour

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