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.