Living · MS Life · Spoonie Parenting · work

Back to Work and (Almost) Famous!

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):

WH2

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.

WH2

Have a fab week everybody!

Jen 2

21 thoughts on “Back to Work and (Almost) Famous!

  1. I heard you on Women’s Hour yesterday and it inspired me to look up and follow your blog. Fourteen years ago I was diagnosed with remitting and relapsing MS. I’ve been very lucky and have only just had my first major relapse at the end of June. I have a 10 year old and a 11 year old. Obviously they aren’t used to seeing me like this and it has become a bit of a shock for them. I haven’t told them about MS yet. I was admitted into hospital for 3 days of intravenous steroids which helped at first with my foot drop on the right side. But after the steroids left my system a week later my symptoms came back again. I’m having physio and seeing my MS specialist on Monday. It’s the fatigue I’m really struggling with. I can’t do much before I’m physically and mentally exhausted. After reading your blog I’m looking at the Overcoming MS diet. I’ve ordered the books. I’m off work sick at the moment. I’m hopefully returning after the summer holidays but I’m not sure if that’s going to happen.

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    1. Thank you so much Tracey and huge apologies for not replying sooner; I was away on holiday and then have just returned to work so haven’t been on my blog! You sound the same with me in regards to fatigue, that is why I am struggling so much at work. Not too sure how long I will manage, to be honest. It can be so hard for our kids to see us poorly. I find that even though mine can sometimes not appear to be bothered by it, they can be extra helpful (at times!) if I am struggling. I hope yours are too. What do you do for work? I enjoy the OMS diet and I plan to stick to it because I like to feel like I am doing something to help. Sorry for the delay once again, wishing you all the best xxx

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  2. That’s very cool to be on the radio. I commend both you and Louise for being superstars.
    As far as work, you do your best. I did the accomadations at work. It helped me stay on for an additional year and a few months but it just became too difficult. You know you need to listen to your body first and you will.

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  3. I am so glad your job is understanding and supportive! Remember to always take care of your self and do not push yourself too far! That is SO exciting you get to be on the radio for 20 minutes. You are more than just almost famous you are famous and an inspirations to so many!! Keep you the good work!!! I wonder how I can listen to the radio station here in the states.

    Liked by 1 person

    1. Thank you for your comment! I think that if you click the ‘Woman’s Hour’ picture in the blog post, it should take you to the website where you can hear it. It might be a case of signing up to listen but it is free. Thanks for reading! Xx

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  4. It’s heartening to hear your employers have been supportive, especially in making the reasonable adjustments (it may be law, but some employers can be such…!) Also very exciting that you got some moments of fame on the radio, will have to check it out! Has it made you want to go back for more?xx

    Liked by 1 person

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