It’s only Wednesday, and I have had a pretty eventful week so far. Many of you may know that I am currently off on long term sick leave from work and have been since May; I was struggling so much in regards to fatigue and mobility in work that I suddenly just felt that couldn’t do it any more. It is so hard: I love my job and the people that I work with. I love the kids and the feeling of satisfaction that I get from helping them. But the reality of living with MS means that sometimes I just need to put myself and my needs first. It is a difficult balance, as so much of my mental health, sense of self and self-esteem is tied up in my professional role. Luckily, my employers have been fab, and have always been willing to support the ‘reasonable adjustments’ that are required by law to support those with a disability in the work place.
Over the past couple of months, I have been attending ‘long term sickness reviews’ at work and been assessed by both Occupational Health and Access To Work (a government initiative to help disabled people stay in work). The recommendations were as follows:
- Work non-consecutive days (Mon, Wed, Fri) instead of my previous Tues, Thurs, Fri to help balance rest/fatigue
- Using voice activated software to write reports
- Have an adjustable desk and chair in the room where I provide therapy to stop me having to walk back and forth to the Therapists’ office – hopefully to reduce fatigue and allow me to have a quite space to concentrate
All of these adjustments are almost in place, which means that I will be starting back in 2 weeks for a phased return. How do I feel? Both excited and nervous. Excited because I would like to get back to the job and nervous because I worry the adjustments will actually make very little difference. One of the reasons for the height adjustable desk is for me to be able to use my scooter if needed; however there are no plans to put any disabled access doors into place to get in/around the department (due to cost), so the chances of me using my scooter seems low. Pretty ironic for a hospital, eh? Anyway, all that I can do is give it a chance and hope that the adjustments help – I will obviously keep you posted!
On a more exciting note, I have also had 20 minutes of being (almost) famous on the radio! I was on BBC Radio 4’s Woman’s Hour yesterday talking about being a disabled Mum. This all came about because my friend, Louise, who has a form of Muscular Dystrophy, a degenerative illness which causes muscle wasting, approached Woman’s Hour with the aim of raising awareness of the challenges of parenting with a disability and she managed to get me in on the act! Louise is a vibrant, bright woman who talks so eloquently and emotionally about her life with her little boy, Jacob and the struggles she faces. I identify with everything that she said in her interview. Please have a listen – I reckon Louise has a calling for a new job as radio presenter! Louise is on 30 minutes into the programme (you may just need to sign in, which is free):
In my, case, a lovely lady named Catherine came to our home to shadow me for a few hours whilst asking me (and our kids!) a few questions about my MS. Catherine was really friendly and put us all at ease, making it really easy to answer her questions without sugar coating the answers. She had us going through the ‘normal routine’ of the kids arriving home from school, playing with Lego and battleships and cooking tea. Our kids were superstars, answering her questions with honesty (sometimes a little too much honesty, in the case of Ava, lol).
I really, really appreciate the opportunity to talk about my MS and how both I, and the kids, feel it impacts of my parenting. In taking part, I really hope that both Louise and I have managed to raise awareness about the struggles that those with disability and/or chronic illness can face that the general public may not realise or understand. If you fancy having a nosy and hearing my hybrid Canadian/Scottish/English accent, I am on from 28 minutes on the link below.
Have a fab week everybody!