First new job since diagnosis

New diagnosis and before diagnosis
1

Hi,

This is my first post and sorry to plunge straight in with a questions! I was diagnosed with relapsing-remitting MS a year and a half ago. I’m a 30 year old female and I left my job during the pandemic due to changes in the organisation and lack of certainty that my role would continue.

I’ve now been offered a position which I have been covering on a temporary basis for the last 6 months. My employers are aware that I have MS, but since I am now moving into a permanent role, they have asked me to attend an appointment with Occupational Health.

Since my diagnosis I’ve had several relapses and I’ve managed to identify the symptoms which occur only during relapses and those which tend to be more constant.

I am basically worried about how well I will be able to explain in the OH appointment and I’m afraid that I will get embarrassed or not mention things I find awkward! I am not even sure what it is reasonable to expect in terms of adjustments - so I don’t want to be too demanding or awkward!

The symptoms that seem to occur only during relapses are:

  • fatigue and pain, although these tend to be manageable if I pace myself and prioritise
  • occasional speech difficulties - not incredibly severe, but just such that I slur words a bit and have difficulties with specific pronunciations
  • problems with walking: sometimes it’s just stiffness but sometimes I have trouble coordinating my steps properly and it takes me longer or I have falls

The symptoms that unfortunately aren’t tending to go away during remission are:

  • pins and needles and numb fingers and feet. That’s another thing that can make me have walking difficulties because I feel like I can’t sense where my feet are and what they’re doing!
  • bladder issues - I don’t get a lot of warning when I need to “go” and I have quite a lot of accidents… I am supposed to have an appointment with a continence nurse but it hasn’t come through yet. I tend to use pads and carry a change of clothes to cover the more major accidents
  • bowel issues: I seem to be having let’s say “digestive” problems non-stop, which I never had before. I get bad bloating and often constipated, but then I sometimes “leak” without having sensation. Sorry, I know it is gross and embarrassing!

I guess the adjustments I’d like to ask for are:

  • working from home some of the time during relapses, to manage fatigue (it should hopefully be possible as we have some flexibility at the moment anyway, which I think is expected to remain post-Covid)
  • being allowed to use the disabled toilet on our floor (the ladies is one floor up with no lift)

Does that sound kind of reasonable?

2

Hi I dont know the type of job you do but that doesnt sound unreasonable at all. if you have been working from home there is no reason why you cant do so again, and the use of a toilet is hardly putting them out!

3

You have made a clear list and explained in a cogent and clear way here. I would take a written copy and maybe a friend if you are feeling nervous. You obviously want to do the best for you and your employer. You are taking intelligent steps to reduce or mitigate issues so hopefully your employer will support you and keep a positive and productive member of the workforce. I wish you all the best.
I am a repressed prude but my dealings with continence professionals has been very positive, supportive professional and far less awkward than I feared.
Mick

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4

Your needs in terms of the adjustments you need to do the job they’re paying you for will change over time, so don’t worry too much about trying to make your list future-proof. You can work with your employer to review as necessary.

What you’ve done for now seems to me sensible, business-like and likely to be considered ‘reasonable’. I like your attitude of it being a collaborative thing, this working with your employer to make things work. That’s the way it’s supposed to be. I hope that your meeting goes well.

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5

Hello, I would say everything your asking for is fine. Your MS sounds very much like mine.
I would say the continence clinic will be good. With luck you will get a daily tablet that will take away the urgency. I found it makes a huge difference.

Good luck

6

I think it’s very sensible, and it’s great that they seem willing to work with you. Best of luck!