I’m 47 and have been diagnosed with RRMS since 2008. Since then I have had a variety of treatments, most recently 2 rounds of Lemtrada, the last round in September 2020.
Since then my right leg has started to go numb and ache inside, my fatigue increased significantly and cognition reduced noticeably.
My neurologist has arranged an MRI scan for this week.
I have had two long periods of sick leave this year, both stating ‘low mood’. I’ve been referred to Occ Health with one recommendation being to work M/W/F so I can work on fatigue management Tues and Thurs. Work have agreed to 6 weeks of this and I am into my fourth week. I’m also able to work from home so I can have a sleep at lunchtime. I’m not noticing any difference to my fatigue. I’m trying to do positive things on these days and also have counselling but so far no impact. I sit and look at my screen and can’t concentrate t enough to do any work. My hands are clumsy so I have difficulty typing. I am meant to go out and about in my current role but driving long distances isn’t an option for me now due to my increased fatigue.
I am concerned about my professional future. I’ve worked in the Civil service for over 20 years. I’m wondering if Ill health retirement is an option for me. I don’t know much about it and how it works financially.
Has anyone been through this before? Any advice to share about any of this?!
Thanks in advance
What did you decide about work , just wondering how you got on as find myself in same situation
Hi Shelly, sorry for delay in responding.
I’m currently working in a madey-uppy role between two units providing admin support instead of my proper job. This is a trial to see how I cope over the next 6 months. It is also a reasonable adjustment I guess. My last PDS shows me as underperforming. My managers will be supportive of Ill health retirement if I choose to go down that path. My pension company also mentioned efficiency dismissal as an option as well. I need to ask my employer to contact them to obtain estimates for what my options look like financially.
Hope you are ok? What developments have there been since you messaged?
I have had results of my lumber puncture and olicogonal bands present - waiting to get results of repeated MRI scans in feb to see if any more lesions compared to last MRI 6 months ago
I’m still off work - community mental health nurse
Occupational well-being doctor said I’ll health retirement in her experience is only given to terminal illness so I’m not sure why it’s even mentioned in meetings
DVLA have not come back re driving since notification of my diagnosis- they are seeking info from GP and Neurologists
I have brain fog, eye sight is affected ( didn’t realise until 4 pairs of new glasses later ) that the fog is my eyesight and not poorly made prescription glasses
I still have symptoms daily but the extremely painful leg spasms stopped in oct time thankfully
I’m not on any medication but having physio for mobility and continence physio
Today I couldn’t wake up as felt so tired despite a god bedtime routine
I have pain daily but not excruciating pain , I have what I call hits so all of a sudden I will get what I call an electric shock - so sometimes it’s to the top of my head , or up into my groin
Today I’ve started with pain in my left hand and that has me moaning a bit
Yesterday I felt like someone was blowing cold air on back of my head which was then followed by the feeling someone had poured ice water down my back
Then daily I have the heat - freezing outside so I’m layered up then I’m on fire and stripping off and opening doors
One are of my body will be ice cold which seems to be my right leg at min but above the knee it is on fire and so is my trunk
Work have said if there is no planned RTW at next meeting it will be ill health retirement or redeployment
There are very few mental health nursing jobs in this trust and the job I have is one of the very few
I am only MH nurse on my team providing crisis care
I’m so worried re returning to work and falling in a patients home or on the way in or having the brain fog during an assessment
I just don’t know what is going to happen
Hope your doing ok
What’s the make up role like - is it working for you
If it’s not your role ? How are you finding it
My well-being doctor says I could be redeployed and answer phones
I was totally demoralised and even thought just hand in my notice and be done with it until my friend / colleague said no way and talked me out of it
Thanks for responding and happy new year
Hello I am in the same position I have now decided I want to work part time I don’t know how to go about this financially so any advice is on this would be grateful I know this is a question rather than any advice to you so apologies for this
Hi there. I’m also finding myself feeling like I’m being pushed into early ill health retirement but I’m single now with a small pension pot. My ex of 17 year marriage ran off with his company and then refusing to give over the 50% entitlement without court order. I have my own home but it’s the family home (children at uni and army) but this is where they come home to. With the home as an asset I can’t claim benefits or write off debt I can’t pay. But I also can’t sell due to low equity; where would I go. Once diagnosed I’m absolutely pushing for working from home 4 days with 1 day in school (I’m a school business manager). Post covid I think so many sectors accept the working from home with adaptations as opposed to workplace adaptation benefits. Ill health retirement just would not work for me so I need to push through the pigeon holing. I totally get the fatigue and inability to work through it. I have days I could sleep 18 hours easily but I’m taking prescription Vit D and Holland and Barrett B12and that seems to be working well. I don’t have critical illness cover. The cost went so high with covid I couldn’t afford it anymore. So all those stories of ‘oh you’ll get your mortgage paid off’ aren’t true for us all, making early retirement even further out of reach. There will be a disability charity near you that can help you navigate this maze and if you or anyone else reading is concerned about finances step-change is also a charitable organisation with free advice. I’m not advocating any organisation it’s just what I’m doing and where I am in the process of not going down the ill health retirement until I absolutely have to. C
Just thought I would update
Yes my contract has been terminated due to ill health
Now in the process of the application for ill health retirement - well-being doctor has had forms for 8 weeks and still not completed as waiting for consultants report
Hopefully will all go soon
I’ll update when there is any decision on it
Hope all are doing ok and looking after yourselves xx