patoms 24/01/18
Last reply 5 months ago
To Career or Downshift

Hi everyone,
I was Dx’ed 2 months ago. I have active lesions in my brain and spine. My body got hammered by the MS: optic neuritis, balance gone, barely walk, numbness in hands and feet, internal plumbing askew. I couldn’t work.

Right now I’m taking time off to rest and heal. I’ve regained a lot of my previous health, but I still don’t have my previous energy level. Not even close.

How many of you have continued to work full time, changed to part-time, or have downshifted to something completely different and non-stressful. I turn 50 this year, I have 2 daughters 12 and 15. I’m tempted to try to continue my career, but if the stress and brain fog become bad, I ask myself, what’s the point. My wife works full time and we have the financial means for me to downshift.

What does everyone recommend for me?

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stumbler
5 months ago

Hi @patoms and welcome.

Well, looking at your previous forum replies, you’ve got your health and MS management under control. You also understand the interaction of stress and MS.

You’re right to be resting up at the present time. Your body needs time to recover.

It is possible to continue to work fulltime. Just manage your hours effectively, scheduling occasional rest breaks. But, can you avoid the stress? After all, you have two daughters, who are fast approaching becoming ladies – how stressful could that become over the next few years………..

There is more to life than work. It really is a means to an end, but you already have the means…………

See how you recover, then play it be ear, adopting a flexible approach.


nutshell88
5 months ago

I’d say you know yourself better if you feel this job would cause stress on you and know stress is your MS’s enemy I’d advise you to have a part time job.
I graduated univand looked for a part time job right away altho ny MS is not too bad yet.
I work from 3 pm to 8 pm cant even be bothered by getting up in the morning daily. And this job is entirely different from my uni specialest.


vixen
5 months ago

Hello @patoms, I am in exactly the same position as you – age, careers conundrum, diagnosed 2017. Part of my recovery involved me and husband sitting and thinking; OK, all things permitting, what do we want to next 5 years to look like? We both feel at our age we want to focus on quality. We’re not wealthy by any means but have looked at a way to move to want we both would like, which is to work less! So we’re in the middle of a big financial reshuffle to make that possible. I guess that’s one poor excuse for having a diagnosis at our age; at least we’ve done the career setting and mortgage responsibilities etc. Try to give yourself breathing space as you recover, then plan a major evaluation of what, given improved health, you want from the next few years while you adjust to the diagnosis. Good luck! X


pug1
5 months ago

Hi, I was diagnosed 12 years ago with one big relapse, seemed like a stroke down my right side. I wanted to give up everything whilst I was recovering but after the initial shock I carried on working but cut my time down to 4 days, then 2 days. I started bot oxygen therapy and after some changes in the workplace I was needed more so now doing 3 days with a rest day between. Motability is my greatest problem, I use a 4 wheel walker and my boss made sure I had a parking space and a ramp by the office door. Some days are really tiring but my work colleagues are brilliant and help me no end. Don’t make any rash decision until the relapse is over, you may think differently and ease yourself back into work, just take it slowly and calmly, you never know how you will feel.


poppy12
5 months ago

Hi @patoms

I soul-searched a lot after diagnosis, including reading up on things related to employment. It looks like many MSers give up work shortly after diagnosis or the first bad relapse, some think they can’t manage and/or people close to them encourage them to do so. This often leads MSers to regret the decision further down the line but then suddenly it’s tough to get back into the labour market.

A couple of thoughts: Don’t make big, life-changing decisions while feeling unwell and so shortly after diagnosis. Take time and learn what your MS looks like over the space of at least a year. Take also time to come to terms with the diagnosis. Also, consider how much you like your job – if you have good colleagues and enjoy your work, quitting now may just be another loss and you’re dealing with a loss and big change already. If you don’t like your job, that’s another story. I’d also see what adjustments can be made to help you do your job.

My MS nurse says to give at least 6 months for healing after a relapse – things that haven’t recovered over this time are likely to become part of your new normal. Some of my 1st big relapse issues lingered for almost a whole year, including the depression after diagnosis. In hindsight I am sooooo glad I didn’t make any rushed decisions despite external pressure from the family.

In a nutshell, don’t rush any big decisions and especially don’t make them while you feel crummy.

Take care, poppy


cammo
5 months ago

Hi @patoms,

After I was diagnosed I resigned from my stressful Directorship job and took a much less stressful role.
There was a pay cut and not really an advance in my career but it meant I was working with a good employer (with unlimited sick leave) and little to no stress.
I also negotiated a 9 day fortnight into my contract which is great and would definitely recommend it to anyone (MS or not). It means I have more time to spend with my young kids/help out my wife/attend midweek Drs appointments.
I have been offered other roles since starting here for much more money. But I really couldn’t have this set up any better.
The last time I was offered a high paying corporate position I asked my father (a doctor) what I should do.
He said “Cam, you don’t know what is going to happen tomorrow. You could wake up not being able to walk… you get along with your boss, you like your work, you have unlimited sick leave… you would be crazy to leave your current employer”.
I would totally recommend a downshift. Life is too short and fragile to be stressed out.
Take care
Cam


daybyday
5 months ago

I’m in quite a different position, and this discussion is helpful for many reasons. I would agree with @poppy12 in that you should take your time to heal and learn what life might look like for you over a bit of time. If you have options for a longer period of rest and to ease back into -whatever- your normal looks like now, it’s a good idea to slow down, even if it can feel difficult not to get back to ‘normal’ as much as you can as soon as you can. And any possible huge changes are going to require a lot of thought and adjustment. Don’t rush.

I’m someone who has not had much luck establishing a solid career. I had a lot of struggles with depression and anxiety early in life and it took me into my 20s to recover enough to begin really working. I’ve been working all sorts of no benefits insecure contract work in the past few years. I tried to become a teacher in 2016, but was not accepted, and in 2017, I was diagnosed. Because I was juggling contract work, and needed to work to survive, I applied for a job the day before my ON became symptomatic, and I interviewed for the job and then began it with blurred vision. I think my blurred vision hindered my performance, and they did not renew with me.

Right now, I am still managing some things, seeing small improvement in what’s left (I have a kind of tingling in my hand), but my optic neuritis healed. I’m on Ocrevus since November, so right now, I have been trying to eat better, began some supplements and seeing results, especially after beginning magnesium supplements and it easing my spasms.

I chose this username, DaybyDay because that is my philosophy. I don’t have job or career security, and those things were part of why I wanted to change my career to teaching at the age of 35. I figured I could settle into a real steady career for 20+ years or more. Now, of course, there is more to consider, and we all have to do our best to listen to our bodies and minds and do good things that help us. If you have choices to create space for yourself while you heal and process your new reality.


amyb
5 months ago

Hi, I am 27 years old and have worked full time since college. I now study alongside work. After my second relapse and diagnosis my get up and go had creeper away from me a little bit more. Before diagnosis I always thought everyone was tired all the time and hated work / getting up early etc but now after diagnosis I understand why I have felt this way for quite a while.
At the moment I am trialling full time hours but only a half day on Wednesdays for a little bit of relief. It helps psychologically but not so sure if it helps physically. I would take Wednesdays off completely if I could afford it but I can’t at the moment. It’s been a year since my last relapse and my energy levels don’t seem to be improving.
I’m taking each day and month as it comes and thankfully I have negotiated an arrangement with my employer whereby sick days relating to ms do not go against me. It still makes me feel terrible when I take a day off but hey ho.
I will reconsider any other necessary adjustments as and when I need to.


patoms
5 months ago

Hello everyone! Thank you for all of the very thoughtful responses. Clarification:
1. I am currently not employed
2. My first exacerbation has been over for 1.5 months. Today I received my second infusion of Tysaberi (side note: I think depression might be a side effect on me)

Health wise, I am ok except for very low energy and tingling in left hand. Psychologically, just the thought of commuting, working 8-9 hours, dealing w/ possibly crappy mgmt, and helping out at home after work, makes me recoil in horror.

Rationally, the answer appears easy: downshift.

But I am a male and I have an ego. The male ego is built upon two coponents:
1. Virility (ie health)
2. Career success

I have had both of those ripped away from me. My ego tells me, “Apply for that job. You can do it. Won’t it be good to make some money and have career prestige again.” But my mind says, “You idiot, life is more than that. You need to think long term and stay healthy for your girls. Plus, you can repurpose your life. You can volunteer at a shelter, you can get involved in the wellmess movement, you can do a lot of different, interesting things.”

As an earlier poster said, working is a means to an end. If I don’t need to….well then, I am just a poor, unimaginative sap who uses work as a crutch.

I keep thinking: wouldn’t it be cool to structure for myself a life where I am giving back to the community, where I am fully present for my family, where I support my wife’s career in the background….that could be a life of fullfillment and satisfaction….where other guys who hate their jobs look at me and say, “Doggone it, I wish I had his life.”

Thank you all again!
Pat OMS


edmontonalberta
5 months ago

@patoms

Pat – you are doing well.

I would put a gun to my head if I had to commute, then work 8-9 hours a day with possible crappy management. I would do that if 100% healthy. Or like you, recoil in horror… 😉

You appear to have a good wife, two daughters entering the prime of their lives. You are getting close to retirement without financial challenges. From your writing, it appears you are intelligent & smart enough to analyze your present situation.

The virility frustration part of being a man; I agree with you. Losing my 1st wife from Scleroderma 24 years ago taught me that intentions are the most important thing. She did nothing wrong; I adored her. It was not her fault she got sick.

You are completely wrong about the career success part. When we are 20 or 30, this is important. Once we hit 50 (which you have) the priority should be relaxing & enjoying life.

You could probably make money from home; the internet gives us lots of possibilities. But if you can afford it, invest your time fishing, golfing or doing fun things. Spend your valuable time making your wife happy; focus on helping your daughters. Figure out which friends are 100% on your side; get rid of the rest…

Life is a journey & we all have the same destination. Enjoy the ride…


cameron
5 months ago

I totally endorse what everyone is saying and can only add my experience, which is that although we’re told that MS is constantly changing, I didn’t internalise that message till it happened to me. Seems to me there are two things going on after diagnosis: one – your head. That psychological change and the adjustment to accept the diagnosis is HUGE. For me, it took at least five years to get my head round it all. I don’t think I was particularly weak emotionally and had never had depression or indeed any mental issues, but it hit me very hard, occupying 90% of my waking thoughts on a daily basis. Second off is the condition itself. My supposition (I have had a badly impaired leg almost from day one) was that that I was in a rapidly downward spiral. That was fourteen years ago. I still have the bad leg but am otherwise OK. Now I don’t know how or when your MS will settle (or indeed if it will) but the odds are pretty good now that treatments are better. In MS terms, you are still very much the new kid on the block. My advice (as others have said) would be to hold off making decisions not just till you’re over your relapse but also until you’ve tried all the interventions to make your ‘new normal’ feeling OK. That means: living as healthily as you can, with as much exercise as possible and following your neuro team’s advice very closely. If and when you feel settled, you’ll trust your own instincts to be able to make decisions.


rachaellouise
5 months ago

@cameron – very good advice –
I feel like I’ve gone crackers a lot of the time – it really is hammering me . I’m new to diagnosis but the adjustment is just not happening !
I’m fed up of living like this ! Symptom, then another one! Then same one comes back! I’m in limbo land – I want to fight with all my might then I just can’t do another day . That’s how it is for me.

I’m in the i can’t do another day at the moment .

Rachael x


cameron
5 months ago

@rachellouise – you’re not going crackers. For me, the only thing that helped was to hear positive messages from (principally) the neuro team. They were the only people I trusted to put my symptoms into perspective. Early on I had the good fortune to meet a neuro physio who regularly checked my motor deficiency. Under her guidance I started exercising to retrain the MS-affected muscle groups. I got feedback on how this was going week on week and could start measuring the improvements as they came. Then at the (DMT) clinics, MS nurses would ask me about daily activities and how I was affected. I always came away cheered – someone was ‘attending’ to me and they seemed to know how I was feeling and gave me encouragement. On one occasion, the neuro had said to me how well I was doing and I repeated this to the nurse later. I must have sounded incredulous, because she looked at me quite sternly and said ‘If he said that, you had better start believing him’. Without positive feedback, you’re left with your own nightmare visions and Dr Google. Not the place to be. Big hugs, x


cameron
5 months ago

@rachellouise PS How much support are you actually getting?


cameron
5 months ago

@daybyday I’m sorry to hear you weren’t able to teach. I was in the profession for 35 years, five of them after diagnosis. In those last years there was an incredible amount of change going on, resulting in longer hours and heightened stress. I wasn’t at the sharp end of anything apart from admin, as by then I was in a senior managerial position. I know categorically, though, that had I been classroom-based full-time I could not have worked after diagnosis. Reasons: 1) huge amount of moving around – stairs, long corridors, building to building; 2) work to be taken home – lesson prep takes ages and thanks to the constantly changing curriculum you rarely get to repeat what you’ve prepared in previous terms/years 3) scrutiny – you’re 100% accountable for children’s results, however unreasonable that is in practice and as ‘encouragement’, you will have regular classroom observations and be performance managed. So no pressure then……. I’m afraid the good pay, holidays and final salary pension are paid for in blood these days. A better alternative might be to become a support assistant. Still a lot of moving about, but more manageable and at the end of the day your time is your own and if the kids don’t get the grades, it’s not your fault. Several friends have taken this route, either after giving up teaching or because they see it as ensuring a work-life balance. xx


potter
5 months ago

I think the most important thing to consider is the stress level where you worked. If you enjoyed your work and there was minimal stress you could probably keep working. I quit working before I was diagnosed. My mother had just died of ALS at the age of 64, almost all of my mothers immediate relatives died of ALS or MS. The research doctors told me and my sisters we had a 50% chance of being diagnosed of ALS or MS. I was 45 at the time. My husband and I decided we had enough money to live and I could devote more time to my pottery. I had my degree in Ceramics but never any time. I was diagnosed RRMS when I was 55, one of my sisters died of ALS a few months ago she was 61. Retiring at the age of 45 helped me lead a stress free life, I just had my first relapse in 10 years and my neuro told me it was a mild one. When I had my relapse I had been taking care on my 94 year old mother in-law. I was stressed out with the cooking, taking her to doctors appointments and shopping. Stress is your enemy! I have started cooking for her again but have given the job of doctor appointments to her older son. While you are recovering you can consider all of the advice we have give you. I know when my son was your daughters age I was working as a decorator and could be home when he got home from school. He had ADD and I can’t imagine how much trouble he could have gotten into if I hadn’t been around. Potter


daybyday
5 months ago

@cameron Thank you for your insight. Some days, I do think that, despite how rough not being allowed to continue to teach and solidify this career change to teaching was on me – given that I was diagnosed with MS just about one year later, it was for the best. But I’m still trying to find a good, secure, stable career option for myself to change over to.

Sometimes I still do think about pursuing teaching again, through more traditional means) in the future (fortunately, language instruction is usually a different track.) but I’d probably be 40 by the time I’d step in front of a classroom, and MS helps shape my decisions now. But my goal this year is to invest time in pursuing skills and opportunities that can lead me to a better situation. I have a coach appointment at a job advice program soon where I’ll discuss all of this, including planning around MS, and see what ideas are sparked.


isaacson72
5 months ago

I’ve heard that even if you have a stressful job, it’s very helpful to do things that alleviate that stress. Nobody can avoid stress. But do things you enjoy, often. Exercise. Meditate, if that’s your thing, or yoga. I do embroidery and other needlework hobbies – it relaxes me. My neurologist told me that yes, of course, a less stressful job is ideal, but if that can’t be avoided, do things to counterbalance the stress.

I have a really stressful job and have a 15-year old son. I’m lucky that my kid is pretty wonderful but he’s still a source of a lot of stress. I could leave my job & my 2-hour commute (that’s round trip, thankfully) and I will, when my son leaves home. But for now, this job gives me a lot of flexibility and the pay is good. So I stay. But I also try really hard to do things that help relieve stress, as often as I can.

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