I’ve found that since having a chronic illness, I’m meant to accept all aspects of this new way of life. First I have to accept that I am no longer the fit and healthy person I was for the first two decades of my life. Then I have to accept the new, harsh limitations of being ‘energetically-challenged’. Next there’s the fact that I must accept that society and the medical profession aren’t really bothered about my particular health condition.
I do feel that, for the most part, I have done pretty well at accepting the above. It comes and goes and I’m not necessarily happy about it all but ultimately accepting those things has allowed me to move forward.
I have struggled with accepting help though, be it from family or friends (particularly friends actually) and until the end of last year I hadn’t even given much thought to outside help and support.
Since moving out of my family home and in with my Mr Tree Surgeon, it is clear just how much help I was getting from my parents. Mr T.S. doesn’t have a 9 to 5 desk job. Some days he has climbs over a dozen trees, taking each one down safely with a level of concentration that baffles my fogged brain. He knows exhaustion; mental and physical. He is self employed and so comes home to answer phone messages and emails, and then must send off invoices and mend any broken equipment.
It is by no means expected or asked of me but I try to help around the house as much as my energy levels allow. Some days (most days!!!) that just isn’t possible. Even with all the will in the world.
In October 2016 I bit the bullet and reached out for help from my local adult social care team. I was told within weeks that there were too busy to take my case despite it being clear that I needed help. I’d told them how quickly I become poorly – after taking a shower, for example.
They knew it was rare for me to undertake housework – ‘The Mothers’ (his and mine) have taken to doing some of our laundry for us and have both been round to do the dishwasher, whizz the hoover around and clean the bathroom. A friend of mine even came and did the same which was lovely, if a little strange to have her hanging up my clean underwear to dry
Food preparation and cooking is more often than not the stuff of dreams – my muddled, fogged brain forgets that ovens are hot and that boiled water is in fact boiling hot! Don’t use your finger to test it!!!
In November I received a call from an Occupational Therapist who had been sent my case file. She came round within a week to assess what aids might help me around the house. My mum came round to sit with me during the assessment. Armed with a tape measure the O.T. decided there were a few things that would hopefully make life easier for me.
She ordered a bath board and a toilet frame. The bath board has quite frankly been a revelation! Something so simple has saved so much energy. I come out of the shower fearless poorly and exhausted (and sweaty!) than I did before I had it. The toilet frame seemed redundant and is currently folded away and hidden in a cupboard ‘just incase’.
She measured our front step and felt it was steeper than average. A shiny new additional step was ordered and then delivered to me. I can get out of the front door without clinging onto the wall or someone’s arm now.
I was treated with such respect and so much kindness. She did slip in a comment about M.E. being temporary and how everyone recovers from it but I’ll let her off. She knew someone of my age would rather not be asking for help. I was shown a good technique for getting out of chairs/bed on the worst days – a technique that will save Mr Tree Surgeon’s back!
In February 2017 I had a call from the Adult Social Care team saying that my case was now being assigned a care worker and that I would get a call arranging my care assessment. I haven’t had the call yet but fingers crossed it will be soon.
In truth, I still have mixed feelings about all of this. But I remind myself that I am poorly and therefore struggling. There should be no shame in asking for the help that I really do need.