Jenny I’ve had a weird week. I realised that I am going to be (medically) retired by 40 years old, if my application runs smoothly. It is a complete mind melt – retired by 40? It’s my own doing, so of course I shouldn’t be shocked. It was me who, earlier this week, told my Manager that the reasonable adjustments that they put into the place last summer at work just aren’t working anymore. It was me who wrote to our HR department to ask the pensions officer to start the ball rolling by sending out the forms for my application for ill health retirement. But, really? Retired by 40?! I wish that it was due to winning the lottery, but, alas, that isn’t the case. It is because of my worsening MS.
If you had told me 10 years ago that this is what would be happening to me at age 39, I wouldn’t have believed you. 10 years ago, I had a one-month-old baby son and I spent my days in a loved-up bubble, staring at his gorgeous face, feeding him and trying desperately to get him to sleep. I had MS, yes, but I was lucky in that I hadn’t had a relapse since before I got married, 3 years previously. I didn’t suffer from any MS symptoms and had been told by my neurologist that my prognosis was good, due to the length of time I had had MS for (15 years by this point) and my very few and far between relapses.
Fast forward the ten years and everything has changed. The tiny baby is now a pre-teen with a penchant for swimming and gaming and I am now a mum of two who uses a scooter and struggles to work due to her illness. The thing is, it’s all happened so gradually that I almost can’t remember when the turning point came. But, I think I do: I remember being on holiday when my daughter was two (I know the exact time as we were in the middle of the joys of potty training!) and having to have a nap in the day for the first time since she was a tiny baby. That was the first time I felt MS fatigue, and soon after that, I went for a run and realised that I couldn’t lift my legs up properly. That was almost 6 years ago and I have since been confirmed as having Secondary Progressive Multiple Sclerosis.
I’ve known for a good while that I was struggling with work and that I would not last until normal retirement age. Looking back at previous emails, I had last contacted the pensions officer for a pension forecast in 2016. Since that time, I have had 4 months off on long term sick but, apart from that, have maintained my 3 days a week at work, working 7.5 hours a day, and usually more. I have had to embrace adaptations to my work when otherwise I wouldn’t have had to, but they have helped me stay in work longer, and I am grateful to my Managers for putting them into place. But, ultimately, the fatigue has got me. My mobility is rubbish, but I can safely say that the fatigue aspect of MS is the most debilitating for me.
So, why now? That old saying ‘you know when you know’, is so true. Since Christmas, my days off have literally been spent in bed; not just to nap then get up again, but actually staying in bed whilst my husband gets the kids ready for school and out the door, then still being there when they arrive home again. I get up for dinner, put the kids to bed, then go back myself (or fall asleep on the sofa). My husband is amazing, and takes it all in his stride. But I have realised, once and for all, that this is not how I see my life being – spending the tiny amount of energy that I have on work, so that my kids, my husband and my health all become neglected. I hate to admit it to myself, but I am not irreplaceable at work. They will find another one of me and the department will keep going on, just as it always does.
No longer doing 3 full days of work will mean that I can focus my energy on family, taking my kids to school and having quality time with my husband. It will mean that I can focus on one aspect of the Overcoming MS programme that I have also been neglecting of late – exercise. I want to try and build strength and up my yoga to help my spasticity. I’d like to read more – luckily The Surviving Life Book Club has come at just the right time – and perhaps pick up German again. I have a vision of me crocheting tiny prem baby hats and donating them to the local Special Care Baby Unit and catching up with friends over coffee. This all sounds idyllic, but the reality is that I will probably spend a great deal of time sleeping and just trying to deal with my myriad of MS symptoms. They’re not going to go away, just because I’m retired. I’m retiring because they won’t go away.
The feelings associated with admitting defeat are complex; on one hand, I feel relieved, happy that I have finally made a decision and I am confident that it’s the right one for both my health and for my family. But I spent six years training to do what I do for my work. It is a massive part of me and my identity. What happens to me when I can no longer do it? Who do I become?
I mentioned on my Facebook page that I had made my decision about ill-health retirement, and the responses I received were amazing; so supportive and lots of assurances that I was doing the right thing for me and my family. I suppose it’s like doing anything new; you just need to try your best to embrace it and focus on the positives. It helps so much to know that others have been through the same and that they don’t regret it one bit.
So, onward and upward with the new phase of my life! Apparently the process of applying for ill-health retirement in the NHS can be a long and complex one, trying to coordinate the pension coming through before you’re officially ‘medically dismissed’ from your work (because it is two completely different pathways). If anyone has been through the process, I’d love to hear. Luckily I have my trade union on board for support.
So, yes, I will likely be medically retired by 40. But that doesn’t mean that my life is over – it means a new one is just beginning, and I am excited to see where it leads me. If it means that I will be able to be more present for my family, it will all be worth it.
I hope that you all have a lovely week ahead 🙂
Cover Photo by Christian Joudrey on Unsplash
I would like to give you advice, but you have said it all here…
that doesn’t mean that my life is over – it means a new one is just beginning, and I am excited to see where it leads me. If it means that I will be able to be more present for my family, it will all be worth it…. Please hold on to that, because truer words have never been spoken. When I stopped working the depression got to me really bad for quite awhile. What helps me most is to try to maintain some kind of a schedule….albeit a very limited schedule….what i mean is try to make things a habit such as the time your wake up and go to bed every day ( even if you add a nap or two), staying as consistent as I can makes chores not feel so much like chores.) I’m going to add you on fb if that is ok? I’m only a message away if you need to vent, but I think you have a great outlook and attitude for this. Best of luck to you!
Thank you so much! I had already thought to myself the need for routine – otherwise I think that it would be very easy to just sit around the house feeling a bit sorry for myself. I also like feeling like I am doing something, even if it only something small. Thank you for the advice and it would be great to connect 🙂
It’s certainly not defeat. It’s life and circumstance. Gratefully you have the ability to stop working and make a change to your life that will benefit you and your family. Congratulations.
Thank you Jamie. You are right – it isn’t defeat, it is taking the bull by the horns and working for a positive change. Thank you for reminding me – it is easy to feel negative sometimes!
I think it is definitely the right thing to do for you and your family, your not a quitter your a winner 🌹
Thank you! I need reminding of that sometimes 🙂
Thank you for sharing your difficult and personal journey. What a tough decision to make, but I hear the resolve, relief, and resilience in your voice. Thinking of you.
Thank you so much!
With things like this, you’re right – “you know when you know”. It will be an adjustment, a huge mind-boggle probably to get your head around in terms of not working and retiring and how your days will now look. Definitely not easy, but nothing you’re going through it. As they say, your life is what you make it and you have to manage with the cards you’re dealt (I’m in a cliche mood today!) and I’m sure this can be a positive new chapter in your life, where you can put your health and needs at the top of the list for a change. Sending you all the very best, Jen xx
Thank you so much Caz! It helps that I have so many lovely people to ‘chat’ to if I need to. Thank you xx
Ah Jen, I am quite a bit older than you and my peers are starting to retire or the lucky ones have done an early one. I finally put in the application for disability with mixed feelings. And I HATE when people tell me, “If anyone deserves it, it is you.” I am still trying for a job but am beginning to realize I really can’t, at least not yet. You are right. Make the changes you need.
Thank you. It is hard to realise that things aren’t working, I rejected that idea for so long. Now that I have made the decision, I am feeling more positive. All the best to you.
I think finally accepting I was unable to work was the best thing for helping me to live well with MS. It was like a weight had been lifted off me and I could finally move on with my life and make necessary changes rather than clinging to a past that was no longer suitable. It was the fatigue that got me too. I remember someone once saying that managing their MS was a full time job in itself and I think they were right. Looking after yourself comes first. If I can be any help with the whole pension application process please feel free to message me. I had great support from my MS nurse with filling out my forms which helped a lot. Thank you for mentioning The Surviving Life Book Club, I’m glad you’re looking forward to it. For me it’s a great project to enrich my life and help others (whilst having fun 🙂) and just the sort of thing which helps give post ill health retirement life purpose and meaning! I’m sure you will find plenty of your own projects and new opportunities too! Wishing you all the best and I look forward to following your journey. Take care xx
Thank you so much Natalie! I might end up taking you up on that offer of chatting to you about the retirement thing, it all seems like such a balancing act of getting the timing right so that I don’t become disadvantaged. I am loving the Surviving Life Book Club! Already finished February’s book, can’t wait to get into the next and it has inspired me to start a new one whilst I wait 🙂 It really helps me to know that others with MS have been through the same, so thank you for being a source of inspiration to me 🙂 xx
Please do and thanks a lot! I know a lot about ESA too if that helps? That’s great, I have sooo many new books on my reading list now 😊.
I can imagine how much of a big decision this was for you Jen. Not easy at all. I’m sure once you get your head around it all, you will feel some kind of relief. I’m sure you will really value that extra time with your family, and hopefully feel a little better without the demands of work. Wishing you all the very best in your next chapter xxx
Thank you so much Emma 🙂 It is easy to go over and over it but I know in my heart what is right, hopefully it will go smoothly! xxx
Better to surrender gracefully than to be dragged out spent. Your post brought back memories for me. Giving up work seemed horrendous, and yet, we find our way, and there is a life waiting on the other side. Your attitude is right on – focus on what is important.
Thank you 🙂 It is easy to get overwhelmed with it all, so focusing on family is what helps to keep me feeling positive!
I was forced into retirement due to a layoff. However, I can’t even imagine ever going back to work full-time. Enjoy this beautiful time with your children and your husband! They are more important than any job! Prayers for an easy and fun transition!
Thanks Jo Ann, I am also hoping that everything will go smoothly, fingers crossed!
I can only imagine what is going through your mind, but good on you for making the hard decision. As you said, you may have more energy when you finish work, and that will feel amazing!. I hope it goes smoothly for you, and please look on the bright side of all this. Take it easy, and you know where I am. :).x
Thank you Toni 🙂 I’ll be glad when it is all sorted, just hope that it is smooth sailing and they don’t dispute my application! I’m keeping my fingers crossed for that extra energy 🙂 xx
Hang in there, girl! You have a great attitude and that will see you thru. You will be happily surprised at how much more you can accomplish after the workplace is no longer the main energy drain on life, although I know well the ramifications of medical retirement. You know it’s time and that is in your favor. You also will know instinctively what to do next, and your family will be happier that you are taking care of yourself. I’ve lived with MS since I was 11 years old, 54 years, to be exact, and it has all been a challenge, but now, with half a brain cell left in my head I’m having fun with it! Just take things easy from now on and save your strength for your family and for yourself! You have to be selfish sometimes and put what’s best for you ahead of what’s best for the rest of the world. You’ll make it happen and you’ll make the people around you happier at the same time. <3
Thank you so, so much for the reassurances, it helps so much to hear from others who have also been though it! My one wish is for my children to benefit from all changes and your comment helps me to think that they will – thank you!
Good luck hon.
It all gets easier with time. You will eventually feel better with the extra rest, and you will make some really great memories for your family at the same time. And keep track of your blog posts by backing them up on your computer on a regular basis. You will be surprised how much they will help you remember things over the years. Most of all, find something to laugh about every day. That one thing has made all the rest of this stupid disease easier for me to take!
Thank you 🙂
This is so amazingly brave and beautiful. My thoughts and well wishes are with you, more than you know.
Thank you so much! I appreciate you reading 🙂
Thank you so much! 😊
[…] However, even a few hours a week seems to greatly impact my fatigue levels. I struggle to do the therapy and the admin in one day, so the few hours of work a week stretches over several days. This, then, impacts my ability to carry out stretches and exercises that are vital for my MS health. I love the extra bit of money and how working helps my mental health, but finding that balance is tricky. It’s the same difficulty balancing work and my MS that I had back in 2018 when I was struggling with my work in the NHS and ultimately applied for ill-health retirement. […]