ME Stories

Today is my 18 month bed-iversary... I've spent at least 20 hours of the day in bed for the past 18 months. (I'm "celebrating" with chocolate mud cake and a soy latte a bit later, in case you're wondering).

Two days ago, I had an assessment for the Disability Support Pension... not something that I ever thought I'd be queuing up for, but you have to go with what life is presenting you.

Attending the assessment meant getting dressed and leaving the house. That's a big deal. It meant walking a short distance and dealing with noise, also a big deal. At my assessment, I explained that I am mostly bed bound, am unable to care for myself (that I've to give up work and move in with my parents)... needing someone to cook for me, clean, do washing, and help me with showering. I said I often could only sit up for 30 mins at a time, and some days not at all.

I had prepared a summary of my medical tests, symptoms, and treatments for the assessor to read, so that I didn't have to explain everything. From past experience, I knew that by the time I got to the appointment (only 15 minutes away), much of my energy would be gone and I would have difficulty thinking clearly and talking. I offered it to her, and she refused it, saying she didn't want to waste 10 minutes reading, and that it would be easier for me to just tell her in my own words. So, instead, she wasted 10 minutes whilst I rummaged around in my brain, trying to recall what treatments I'm currently on.

Then she then asked:

Do I drive? (No).
How do I go at the shops? (Don't go).
Would I use a mobility scooter if I went to the shops? (No, can't sit up for that long, or cope with the sensory overload from a shopping centre environment).
What if I want something from the shops? (Ask someone else to buy it for me, find it online or go without).
What about walking? Does this impact my ability to walk around? (Yes. Reminded her of the difficulty that she saw I had had moments earlier of walking from the waiting room to her office).
Does it impact my ability to do physical things? (Yes, see earlier comment about parents as carers, giving up job, and needing help with every day tasks).
Do I use public transport? (Ummm... ).

I understand that she was just doing her job, and needed to tick some boxes. However, it is an illustration of what it can be like to live with an invisible illness like ME/CFS (and, indeed, any invisible illness). That sometimes, no matter how many times you say something, people just don't hear it.


2 COMMENTS ON THIS POST To “Tale of an Invisible Illness”

  • Kandice

    January 6, 2016 at 5:51 pm

    Yes, Simone – if only we were HEARD and helped. 10 December 2015 marked my 15th year of needing at least 20 hours in bed/day, and I know others have suffered longer and at even lower levels. Brava to you for being a brave survivor! I HOPE that progress on awareness and discovering helpful treatment can be made before you get anywhere close to a 15 year anniversary. Courage, mon ami – Kandice

  • Laurel Galvan

    June 16, 2016 at 5:11 pm

    Boy can I relate. Maybe once a week I have enough in me to still drive and pick up my meds at a drive thru pharmacy, pick up my online grocery order, and maybe even pickup a drive through meal. Then I am bed/couch ridden for several days. I am lucky still at this point to push through the CFS, and CPS due to RA, RSD,and Fibromyalgia. I know one day sooner than later I will be bed bound and it is a frightening thought, but I still try to think about getting back to the times I enjoyed gardening, caring for the 8 acres of property, horseback riding and kayaking/whitewater rafting. I am the youngest of our neighborhood social group of about 15, but had the most ill health of all of them. But it is difficult for people to understand I am so fatigue and in so much pain because it is invisible. Even my husband does not understand it and has offered to move his mother into our home to care for her. I am glad my sister sent me this website. I wish you all the energy you need to enjoy life.— Laurel

Leave a Reply