Skip to main content

MS and Work - Realisation and Acceptance

MS and Work - Realisation and Acceptance

Being a person with multiple sclerosis, I saw my MS consultant (Dr M E Duddy, whom I rate very highly) at the Newcastle RVI in November 2016 for my annual check. This was, what, my 10ish neurological consultation following my return to the North East 10 years ago. So, I went a bit prepared! Well, that’s being armed with some questions on paper and a pen! Stand back!

Without detailing what the questions were, they were of course mostly about me and ‘my’ MS and some of the effects I experience; and a request to see some MRI scan pictures!

I scribbled some answers to some questions at the time but afterwards I tried to put them into more of a mini-blog format (for my sake given the memory!) that I am going to share with you (not word-for-word).

I always enjoy seeing Dr Duddy for my personal knowledge of how my MS is progressing from a neurological perspective other than what I KNOW personally, and he’s a good bloke too.

I could see pictures of my most recent MRI scan on his monitors on the desk; that I do have an interest in, it’s my head after all. We talked about them and looked at the comparison of them in 2006 and 2016. The lesions are pretty much the same (in shape and size and where they are) but the colouring and swelling of them – wow. This displays a level of how active they are, I think:
  • 2006       WHITE!
  • 2016       A lighter shade of grey

2006 MRI Scan showing lesions in my brain
My 1st MRI Scan 2006

2016 MRI Scan after treatment showing 'calmer' lesions
2016 MRI Scan. Similar scars but less active lesions (!?!)

This change for the better (after 10 more years of the active condition) is, that I am thankful for, due to Tysabri magic juice! I have now only one year of this elixir as the risk factor of contracting PML is now weighing in at 1000:1, not 7000:1!

I cannot add much medical blurb to it, not being a doctor, but I have the first-hand living-with experience that he doesn’t! And there were many questions from him to get an understanding of the me and now. One of the hardest things for me is that I feel “I am not as ‘sharp’ as I once was” (something I have said for years). Now it is more prevalent. Which I hate.

During my discussions with Dr Duddy it was said that a function of the brain that does/CAN suffer post diagnosis is the ability to multi-task. Gender aside! Ahem! This is not something I have personally noticed – I am a whiz in the kitchen – singing (ha!) along to the radio as well as concocting monstrously hot curries, for example! But not as good in there I was years ago.

So work. That thing that has been my ‘functional desire’ for years. Well, in line with the multi-tasking effect, the mental and physical fatigue and others (a good laugh eh!?!), it seems that work is as good as a no-no, according to Dr Duddy. Strike me down!

However, he also said to just keep doing what I am doing but to slow down a bit (aaaargh!). This – slowing down – I find difficult.

I have now accepted that the work hunt, which has really been the bane of my no-longer-working-full-time life, is pretty much over – I will continue to look for smaller opportunities on a less regular (than every damn day) basis, just in case!

It is a bit bizarre, however nicely he told me, that my working world is pretty finished, yet to continue with what I am doing with Momentum (namely, looking for work). I had mixed feelings when I arrived home, but got myself a gin and talked it through with Patricia (Ex, not real name). There was relief; looking for work without success for ten years has not been easy. Along the way I have felt angry, depressed and bitter that I went from being a successful engineer to not even being able to get a part time job. So understandably I felt a bit of shock that what I’d been putting myself through had after all been a waste of time. However, being of an optimistic disposition (most of the time!) I have learnt from my experience and wouldn’t wish to change it. So now I’m looking to the future. A different context in mind. My focus will now be to keep busy, keep being useful (volunteering etc), and keeping fit and healthy as best I can. As well as making time for things/people I love of course.

That is my MS consultation bleep, for more of the ‘work’ blog, please go to that chapter - coming soon!!!

Comments welcome!


Popular posts from this blog

F1 Aerodynamics in Schools

Being a STEM Ambassador, I keep check with what STEM enrichment activities are planned that I feel I could support with my experience. I saw an “ F1 Aerodynamics ” related request and it tickled my buds somewhat! So I vested my interest via the formal portal/method to/with STEM and this was responded to. What was the challenge? It is a global competition given as per: “ The Competition - What's It All About? You are a Formula One™ team commissioned to design, construct and race the fastest Formula One Car of the Future, powered by compressed air cylinders. ” The first of the activities was in a middle school in Whitley Bay, to simply share my experience (having been an Aerodynamicist) with the Year 8 kids taking part in the F1 challenge. I enjoyed helping them with what they were doing at that part of their challenge.  BBC! Wow. I would have loved to have had that opportunity at that age. Unbelievable! Showing my age, a bit?! (my middle school had a

MS blog October 2023

  MS blog October 2023 25/9/23 This week of this, bad sleep, fatigue, affecting speech - #Dysphasia - and fatigue linked problems like forgetting to do certain things, eg. Download Toon ticket properly! Tired.                                                 04/10/23 (Wednesday) Again bad sleeps, bad #fatigue. Here's the thing. More notable 'cognitive overthinking' in that I am not on the money. Yet, was fine for the #MS #Zoom on Monday night. And starting to unintentionally upset Catherine, and therefore me too.   FB post:   #Tysabri At time of writing, I am pretty bloody next-level-tired. Or feeling fatigued, in the #MS world. Those who know that; know. Yes, I AM saying that #MS #Fatigue IS different to ‘just’ being tired. Who am I to say that? Someone who has lived with the twat (#MultipleSclerosis) for maybe 26 years now. Maybe more. I don’t know. So, #Tysabri. Well I started with this amazing #DMD (disease modifying drug) over 13 years ago, and it “made me a new man”


  Ocrevus . Notes 1 The infusion was completed at 1pm, and I was asked to wait for 15 minutes after the cannula had been removed. I was told to take it easy for the rest of the day, that'd I'd be tired. Body not used to the new drug, nor my mind, given that I had been anxious about #Ocrevus day. Ok then, I'll accept a lazy day. Was planning a curry takeaway anyway! I am tired. A few nights of bad / poor sleep. Ocrevus. Notes 2 Second infusion (second half dose) done by 1ish. Then again asked to rest for the day. Yes, as per, I was tired. #Anxiety due to an earlier taxi booking (for 07:20), with the small alarm fear! And also a few wake-ups during the night. Usual, but! Prepared with laptop, phone (obviously), headphones, sarnie, bottle of water, and chargers in case. And a BBCi downloaded film. The same as my first unknown Ocrevus trip. Slower start than last infusion, but after the paracetamols and antihistamine, the weak steroid infusion did its thing for half an hour; wi