Behind the scenes of my disability is my full-time job as it often feels. Outwardly you see me laid in bed listening to a book or going for a ride with my Batec but there is a lot more to living with chronic health conditions than people realise.
Firstly there is the management of my care, yes I use agencies to manage my PAs and also a care agency but if a PA is away I have to arrange alternative care myself. I also have the paperwork that comes with having Direct Payments to employ my own PAs and occasionally I have to call or email adult social care about my care. Sometimes there are also meetings with social workers or the finance department. I’m also trying to employ PAs so there is admin involved with that too including looking at CVs, arranging interviews, emails etc.
Being prescribed medication is also far from straightforward. Recently for whatever reason I’ve had to move pharmacy a few times and that’s a total headache to sort out especially as my prescriptions are a bit complex plus I have them organised into medication trays made up by the pharmacy for me. Changing pharmacy means re-registering with the new pharmacy; informing my GP practice; getting my medication tray set up correctly, getting it delivered on time and more. Then once I’m with a pharmacy there are the phone calls to ensure my medication gets delivered to me on time especially if I have an appointment on my usual delivery day and asking for additional prescriptions such as antibiotics to be delivered to me as well as ensuring I don’t run out of medication. I also have to remember to order certain medications, some the pharmacy do for me but my ‘as needed’ medication I have to email my GP practice to order and I have to remember to do that before the medication runs out which isn’t always easy.
Managing my appointments can also be a task and a half. I have to either fit them into when my PA can take me, or alternatively book them after my PA has finished work depending on the appointment type. Appointments are also a challenge when you have an energy limiting illness as they’re exhausting and cause Post Exertion Malaise to develop as a result from doing the appointment. I try to just do one appointment a week to manage my PEM but that’s not always possible. I also have ways to manage the PEM around appointments such as resting before and after the appointment, using mobility aids like my wheelchair, taking notes, doing video or telephone appointments where possible instead and so on. Then there are appointments to make such as GP appointments, community nurse visits, therapy sessions to book and specialist referral appointments to chase up too as well as see where I am on waiting lists for appointments like community physio or neurology.
Then there’s my PIP (disability benefits to help cover the extra costs). I’m dreading when the time comes for that to be reassessed; filling in the paperwork; getting supporting evidence; the assessment. I have the same with my Universal Credit; occasionally having that assessed and trying to gain evidence that I need a telephone or home assessment and the rigour of the assessment process; trying to prove your disability and inability to work (when you desperately wish you were well enough to work) and the feelings of the stigma that comes with being out of work and on benefits.
Then there’s managing the illnesses themselves. That in itself is a full-time job. Managing and staying on top of the symptoms which can often have a domino effect on each other. Treating symptoms when they occur. Looking out for warning signs like low blood pressure or tachycardia. Ensuring I get enough rest, sleep, hydration etc. Keeping my mental health in check. Remembering to take my medication; stay ahead of the pain.
As well, doing all this work can exacerbate my symptoms and worsen my health. Like I mentioned going to appointments can cause Post Exertion Malaise but even the time spent talking or emailing can be just as challenging and can bring on PEM too especially if I’m already having a wobbly day or I don’t pace myself well enough with tasks but even with well managed pacing I can still be left exhausted and with exacerbated symptoms feeling flat out in bed. That’s one of the big challenges with having an energy limiting illness, you have to do all this work despite my lack of energy to do it.
Then there’s all the in between work of this full-time job. Such as ordering replacement disability aids; contacting places to get equipment fixed such as if there’s a fault with my mattress or Batec; making repairs to my wheelchair (if it’s something I can do), if not calling to get that fixed; finding a new cleaner (something I’m currently doing); ordering supplements; logging symptoms in my bullet journal; doing my catheter maintenance; ordering medical supplies; organising and putting away medical supplies; getting PPE for my PAs and any other miscellaneous emails or telephone calls that need making - the list goes on!
Now do you see how much of a full time job it is to be disabled or chronically ill? Plus amongst all that I have to find time for myself as well as do some house jobs (but most of house jobs I leave to my PAs/carers to do to save me some energy).
Also if I’m having a bad day it’s almost impossible for me to get admin tasks done as I have to prioritise resting in bed as talking on the phone is often exhausting and I’m limited with what I can do and I have to reschedule appointments especially ones I have to leave the house for. This is why trying to rest before appointments and limiting the number of appointments is so important but I can’t schedule my bad days and with M.E. should I completely crash everything comes to a halt and there’s nothing I can do; all I can do is try to prevent myself from getting to a point where my body does crash so that I can do my unpaid full-time job. A job I never asked for or signed up to but one I must do.
