Living with MND is somedays tough, other days I forget I have a life limiting illness. The last 6 weeks I have been away from my full time job because things came to a head and a sudden realisation that work had masked many of my thoughts and emotions since diagnosis in March 2022. I realised that I needed to disconnect and spend time working on me. MND started to control my life and that wasn’t a healthy balance. I needed to live without a constant reminder and that there is life outside of MND. It was everywhere I looked and I needed to impose barriers so my social feeds weren’t all MND related.
I wanted to share this blog with you to show how much there is often to contend with on a daily basis. I’m learning to adapt and that there is life outside my illness so that I try to maintain a healthy balance. I’ll still be posting but I’m making sure that it's not all serious. So expect some dodgy dad dancing videos and Christmas content amongst other highlights!
Almost every service I engage with has an application or referral process which often requires forms to be completed or evidence of my illness and disability. Huge amounts of time is spent most days in trying to navigate all of this. There are often huge waiting times (currently 9 months for our wet room to be renovated with no end in sight). I am unable to type on my Macbook as my arms and hands have limited mobility and therefore use head control to type on the on-screen keyboard and dictate speech-to-text. What would ‘normally’ take 5/10 minutes to type an email may take me 30 minutes, per email, using the head control.
I wanted to share an insight into a typical month and kept a note during August 2024 of daily life.
Thursday 1st
Worked 9am to 7pm
Carer visit to shower and dress me along with preparation of a meal and to feed me
Call with Doctors regarding wheelchair application form that was sent to them in mid June which they didn’t action. Very frustrating!
Friday 2nd
Worked 9am to 6pm
Carer visit
Saturday 3rd
Carer visit
Best mate visited and had a lovely catch up
Spent time watching the olympics with Little Man
Sunday 4th
Carer visit
Sister helped set up my new Rayban Meta glasses!
Monday 5th
Non-working day (NWD)
Carer visit
Call to hospital to arrange patient ambulance for this Thursday - respiratory unit check up
Shopping trip in the afternoon
Email to Occupational Therapist (OT) re a pillow riser and fall cushion.
Email to MND Coordinator, Kelly re rearranging a therapy session next Monday.
Tuesday 6th
Worked 9 - 7
Carer visit
Email sent re neater eater appt tomorrow.
Wednesday 7th
Worked 9 - 7
Carer visit
Neater Eater demo.
Kelly visited for a catch-up.
Patient Ambulance canceled for appt tomorrow as they had been appointed incorrectly!
Multiple calls to hospital re the above
Emails received from OT to acknowledge lifting cushion and electronic pillow riser being ordered.
Thursday 8th
Worked 9 - 7
Carer visit
Several calls received from hospital as appointment cancelled.
Visit from council surveyor to measure up for external ramp.
Emails received from consultant and details of next neurologist appt.
Tel call received to arrange delivery of new equipment
Tel call from council re ongoing complaint.
Friday 9th
Worked 9 - 6
Carer visit
Builder visit for wet room renovation to prepare schedule of work
Email sent to council re ongoing complaint
Email sent to respiratory unit re appt to be rescheduled
Email quote received for Neater Eater purchase… £7,000!
Email sent to physiotherapist to arrange visit as I’m experiencing discomfort in my hips.
Saturday 10th
Carer visit
Aunt visited
All in all, a lazy day!
Sunday 11th
Carer visit
Sat outside and soaked up the sun
Monday 12th
NWD
Carer visit
A friend visited for coffee and cake
Tuesday 13th
Worked 9 - 7
Carer visit
Email received from council re recent escalation and complaint
CAMEL cushion delivered
Tel call received to schedule pillow riser delivery
Wednesday 14th
Worked 9 - 7
Carer visit
Pillow riser delivered
Email from physio to schedule visit
Thursday 15th
Worked 9 - 7
Carer visit
Email OT re CAMEL cushion demo.
Email physio to confirm appointment
Friday 16th
Worked 9 - 6
Carer visit
Saturday 17th
Carer visit
My 38th birthday - I didn’t want any fuss other than a low key day.
Sunday 18th
Carer visit
Monday 19th
NWD
Carer visit
OT visit to demonstrate CAMEL cushion so that I can safely be returned to an upright position following a fall
Theatre trip to London to watch Kiss Me, Kate
Tuesday 20th
Worked 9 - 7
Carer visit
Wednesday 21st
Worked 9 - 7
Carer visit
Physiotherapy session.
Email follow-up from OT
Thursday 22nd
Worked 9 - 7
Carer visit
Email from MND Co-ordinator re respite.
Friday 23rd
Worked 9 - 7
Carer visit
Saturday 24th
Carer visit
Sunday 25th - Monday 2nd
Holiday 🏖️
Some days and weeks are quieter than others but some can be extremely challenging and tiresome. I hope this gives an insight into what already is a busy life. My experience so far has taught me that there are still many hoops which have to be jumped through and there are huge amounts of unnecessary paperwork which really could be removed to make things that little bit easier!
Comments