Jenny Even though I have been at work this week, I am still suffering from monumental jet-lag – when my alarm went off at 6:30am if felt like I was being rudely awaken by someone shouting in my ear in the middle of the night. Cue lots of coffee to get me though the day and chilled out evenings… which has got me thinking.
I have written before about my struggle with work (see here). I am actually functioning ok at work – though I do struggle mobility-wise and have started to notice that my concentration is not what it used to be. It’s the impact the long days have on me. I come home after work completely wiped out and basically spend any days off ‘recovering’ (read: sleeping), just to get ready to do it all again. I have had chats with both my Neuro and GP (and my family and friends… I bet they are all saying to themselves, ‘shut up Jen and just make a decision!’) where I go over the positives and negatives of working.
My husband and I had another such discussion tonight, where he said he worried that I would get bored by not being at work, that I would feel under stimulated. But I disagreed; yes, I love my job and yes it definitely stimulates me and keeps me on my toes (I constantly have to assess, evaluate, reflect, change). But I am aware that it is pretty much all I have. I’m too exhausted outside of work to maintain hobbies and activities that interest me. What about the part of me that I don’t really see anymore? The one that goes unnoticed, because work and sleep are hogging all the attention?
I was a good student; I enjoyed learning different languages and always told myself that I would try pick it up again once settled in work. Well, guess what? That hasn’t happened, because kids and responsibilities and, well, just life has got in the way. I taught myself to crochet a couple of years ago and so far I’ve made two blankets, one for each of my kids. However, that is all I’ve made because, by the time I have slumped on the sofa after putting the kids to bed, the effort to find my yarn and hooks seems a bit too much to bother with. But what about all projects that are lurking away at the back of my mind?
I’m a lover of books, interiors, music, food, yoga…. the prospect of perhaps having more time (and maybe more energy, though that may be wishful thinking) to do things that I actually enjoy is exciting. I am aware that this will look different to how it was 10 years ago – no more jogging/running for me anymore, for example. But I think that I might even be able to join and be involved with our local MS support group (which traditionally only meets on a day that I work) to build up a network of contacts; people that I can support and who can support me outside of my friends and family.
And, of course, I can work; maybe not in the same way that I am now and perhaps not indefinitely, but something home-based might suit to allow me to rest when I need to. I might not always be able to do it, but while I can, I want to. Whether that means more writing or something else, I am not sure of yet.
So, I might take this opportunity to broaden my horizons a bit with this blog. Everything that I have written thus far has always had an MS-slant but sometimes I feel the urge to just write about more random things, so I might give that a go.
And in regards to work… well let’s just see. I am not so scared at the prospect of it potentially ending as I was, say, a year ago. They have been been working with me to make any ‘reasonable adjustments’ to help me access work (can you tell that I have read a lot of guidance related to disability in the NHS?!) but I know that when the time is right for me to finish, I just need to appreciate the time that I have had and be ready to start a new chapter (both literally and metaphorically!)
Interesting post, I am going through similar with redundancy, i.e. It’s allowing me to reassess what I want to do. I think it’s a good idea to think about what you want. Could you go part time at work? Is that an option. MS is a “protected characteristic” in employment law and employers have to make reasonable concessions to work with MS as you know. Perhaps that gives best of both worlds? Also a great idea to branch out on the blog! Good luck!
Thanks Vicki, I actually already work part time, it is just that I have SPMS so things are getting progressively harder. I work for the NHS and if I cut my days it would have an impact on my pension and my grading. Thank you for the good luck wishes 🙂
My last two years of working were with modifications. I worked from home 2 of my 5 days. I found that I spent my days off trying to regain some strength to turn around and do the next week. My life became nonexistent. Yes it was odd when I stopped working but I try to do at least one activity a day but I find I can say yes now to things that I’d always turn down because I was to tired. Even just dinner with my parents. I could never imagine working now I don’t know how I did it. I took a lot of medicine to get through a day. When you’re ready, you’ll take the next step.
Thank you so much Jamie. It is a really, really scary step but my life sounds exactly as you describe yours was. It helps so much to hear from someone who is on ‘the other side’, and feels positive about the change, thank you x
Hi Jen. I was going very rapidly downhill (becoming very very forgetful, no concentration) until I decided to try LDN. I was immensely skeptical at first and argued with many proponents of LDN online until I noticed that WITHOUT taking it there was a huge difference. Now (2 years later) I study again and work part-time while starting my own business. The stuff has been nothing short of miraculous for me (unfortunately it does nothing for the mobility!) and I happily push it on anyone with similar difficulties that you are experiencing.
Thanks Tony. I have been on LDN for the past two years now. It definitely helps me with fatigue but I think that the stress of the work I do plus the early starts are what is making the biggest impact. Unfortunate I am at a stage where I can’t drop days or down a level in my work or it will have a massive effect on my pension. I am so pleased LDN is working for you – like you I notice a difference if I don’t take take it x
Although I don’t have MS I do have spinal cord injury and the various conditions that come as a result. I can never work outside the home again but I’ve found so much I can do from here. If you can afford to quit you might find yourself a lot happier. You’ll have more time and energy for your family and the hobbies you can’t keep up with now.
And working from home is a much more viable option these days than when I got hurt. You could perhaps find something that allowed you to work when you felt like it and rest when you needed to rest.
Hi Elizabeth, thank you so much for your comment. I am concentrating on all those reasons – I have kept in with work for as long as I feel able; I don’t want to regret spending more time tiring myself out there when I could be using my ‘spoons’ on something else. It helps to hear from someone who has been there! X
You’re welcome. I just remembered when I wrote myself out and finally realized some things just aren’t worth what they do to me.
Jen – this is a beautiful reflective post. You seem to have thought through all the pros and cons and I agree that it seems like you have lots that would mean you wouldn’t be bored. Good luck with the next chapter and I really look forward to watching this blog grow and develop (it’s looking fab at the moment too) xx
Thank you so much Hayley. It’s a big decision but I think I’m almost there 🙂 xxx
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Tripping Through Treacle!
Thank you Danny! Have a great day 🙂
Most welcome!
Jen, it looks like you have gotten some good advice with the other responses. For me, when I went into forced retirement due to lay off, I was really concerned about getting another job. But through unemployment, with my age and my disability which are ofcourse protected, I was not able to find any work in my chosen field. However, now that I’ve been off work for almost 3 years, I find myself being busy with volunteer work, health and wellness, being a companion for my mother. God really knew what he was doing. Can I get a duh!! I was able to spend time with my father before he passed away and I’m seeing a lot of decline with my mother lately. So for me I was able to redirect my energy in being available in different ways for my family. My prayer is that God will give you wisdom concerning this very important decision for your life and your family’s!!
Thank you so much – you are so right. There are many areas in my life that I feel like I have neglected somewhat due to the time at work and the subsequent rest I need after it. I just need to focus on at the different things that will be available to me when/if I stop. xx
You’ll know!!