I was diagnosed with MS when I was 15 years old (now almost 39). I haven’t had a relapse in over 12 years and was very well until about 5 years ago when my mobility started worsening and other symptoms have emerged - fatigue, cog fog, painful spasticity. I have really struggled at work due to fatigue and the impact that going there has on the rest of my life, namely taking care of my kids. I feel like work gets the ‘best’ of me, so that when I come home I spend my time sleeping with very little energy for anything else. I use crutches for walking very short distances and a scooter for anything longer than 5 minutes. I haven’t officially (Ie through neurologist) been labelled as SPMS but all signs and symptoms appear to point that way - have have gone from EDSS 1.5 to EDSS 6 in 5 years.
I have worked 3 days a week since having my kids and made some changes when my MS started playing up, such as place of work (hospital rather than out and about in the community) and adjusting my days so that I am not in more than 2 days in a row, but it hasn’t made a difference. I am currently off on sick leave and really feel like ill health retirement would be the best option for me at this stage - but my question is how to go about it? I know the NHS is under pressure and my manager has implied that if I know that I am not going to be coming back, that they can start the process for dismissal due to ill health (as they want to fill my post asap). But I have also spoke to my union who say that it would be best to be in work when ill health retirement in granted. I read that you need to speak to your manager about applying for ill health retirement, so I feel like I am in a catch 22 - I need to tell them to get the ball rolling, but I risk being let go before the retirement comes through. Would retirement even be agreed? I struggle with fatigue, walking, concentration and numb hands when typing, so I feel like I would struggle with ANY job for 3 full days, though typically because I use all my energy at work, I am functioning with my work load ok, it is just the impact that work has on my life with my family. I don’t want to waste all my so-called ‘good’ years giving everything to work and my young family missing out as a result.
Has anyone else been though similar? Thanks for reading.