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Living with fatigue

16 July 2015

In any blog about living with “invisible” MS, it’s inevitable that fatigue has to come up.  Like most aspects of MS, I suspect this one is different for each of us, but the unifying thing about fatigue is that most people with MS experience it in one way or another.  For me, it’s something I live with every day.  Not always the overwhelming a-million-dollars-won’t-make-that-feasible kind of fatigue that (for me) is often the first sign of a flare, but a hard to describe feeling of having a lot less energy at my disposal than I used to.  The certain knowledge that one late night will be followed by feeling at least moderately unwell, probably for several days.  It’s a symptom that comes with a cast iron guarantee that if you describe it to a friend who doesn’t have MS, you’ll get a sympathetic response such as “oh I know!  I’ve been just exhausted since…….”.  That’s the reason I don’t normally talk about fatigue, other than sometimes to admit that my decision to work part time was largely driven by my need to manage my available energy stores better.

There is nothing I’ve come across that “fixes” fatigue, but after years of trial and error, I hope I’ve found ways to live with it that work for me.  For example, I’ve arranged things so that I go into work on as few days as possible and do what I can from home.  The downside of this is that I’m typically really busy on the days I do go in.  When you add MS fatigue into the mix, a completely full day at the hospital is an enormous challenge, but somehow, while I’m in the middle of things, there simply isn’t any opportunity to be overwhelmed and I can usually delay the inevitable crash until I get home. 

I don’t know whether any others with MS can sometimes postpone succumbing to fatigue for a few hours by making themselves too busy to deal with it?  It sort of works for me if I only try it once or twice a week. But some afternoons that “three o’clock wall” is almost physically painful to push through.  When I get home after a full day, I am done if I make the mistake of sitting down.  There’s no way I could move in time to actually cook dinner or get some exercise or do any of the things I like to do in the non-work parts of my day.  Many times I’ve found myself sitting in my living room six or more hours after I know I walked in the door, with no idea where the time has gone.  But despite the toll it can take, cramming my hospital-based work into as few days as possible has allowed me to continue in the profession I love so far.  One of the greatest blessings of being in an occupation where I can afford to work part time (a luxury I know many people don’t have) is that I can do this and often take the next day to recover.  I love being at home a few days most weeks, rather than always having to be out of the house and appropriately dressed first thing.  And there’s no doubt it’s easier to do things like regular exercise, enjoying the garden and putting time into friendships - despite having limited energy - if work is not filling all the functional time you have.

I often wonder what my colleagues think about my work schedule.  Do they see me as lacking ambition if they realise I don’t rush off to see patients in Private on the days I’m not at the hospital?  Perhaps they would be wildly jealous if I boasted that I can choose to stay in my dressing gown until lunch time some week days?  Probably most of them don’t even notice my unorthodox work choices!  But I wonder how many of them would see the benefits in the work/life balance MS has forced me to choose if they knew the realities of my week?

I’m not one to make lists such as “the ten top reasons I’m glad I have MS”.  I’m not glad I have MS.  But along with those who have written such lists, I acknowledge there are positive things that have come from the experience so far. I love the wonderful friends I have made through having MS (you know who you are – thank you!) and I am grateful to have stopped trying to clamber further up the “ladder” of academic medicine.  By rearranging my life and re-evaluating my priorities, I’m finding I can enjoy a fulfilling part time work role as well as many of the other things that are important to me – even while dealing with *$(#*!@#$*! fatigue on a daily basis. That ladder might have been easier to climb in the days before MS came into my life, but I’m not sure I’d ever really thought through why I was trying to get to the top. There’s a lot to be said for enjoying the view right where I am!

 

The Unaffected One

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Comments (18)

Thank you for sharing your experiences , the ups and downs makes me realise that it's not just me going through these things they really do occur ! I have just passed the 12 month mark! I have my ups and downs as well, fatigue was bad to start with maybe not as bad now, not sure if I have learnt to deal with it or have done something different? Still working full time, 3pm is a killer! Time to go for a walk and get that cuppa! It's really good to read about others, I don't have anyone to talk to about MS so reading your blogs really help and makes you feel your not alone!

Lovely to have you here, Tanya, and thanks for your comment. I think the first year or two of living with MS is really tough. It was for me, anyway. I came really close to quitting work at one point, but I'm really glad I made it through that rotten time without giving up my career. For me it has definitely got easier over time. I work a lot fewer hours (maybe I finally admitted I have MS and stopped trying to live at the same over the top pace I was managing before I was diagnosed?) but I enjoy life a lot more. I think the fear that comes with the uncertainty of MS is especially difficult at the beginning - something I'm planning a post on some time soon, actually. Not knowing what to expect tomorrow is just exhausting, and not having anyone to talk with about your experiences and concerns is hard, too. These days I've got a really great group of "MS friends" both on line and in real life, which is helpful, and I'm sure you will make similar connections over time. You are definitely not alone and it's a pleasure having you here!

Interesting post TUO! As a medical professional have you researched the medical literature on fatigue at all? Would you happen to have a link to the best research to date on this issue, or is this a field where very little research has been done? Personally I don't buy into the idea that MS fatigue is due to slow electrical nerve transmission through lesions. In my case it preceded lesion development, and worsened to the point of catatonia without any change in lesion load. I can see that a particular lesion may result in an obvious continuous level of physical incapacity (such as foot drop), but as far as I know, no one has shown a mechanism as to how slowed nerve transmission in any given lesion might account for exertional motor fatigue, fatigability, reduced capacity to deal with cognitive tasks or sensory input, non-refreshing sleep/rest, or post exertional malaise/post exertional neuro-immune exhaustion (crashing to the point of being bed-bound - sometimes for days or weeks)... I wonder if you think there may be an overlap between MS fatigue and ME/CFS fatigue TUO? Any thoughts?

Lawrie - This is such an informative, thoughtful response. Thanks for posting and making me think outside the fatigue box :)

Hi Lawrie, I can't claim any special expertise in this area, I'm afraid. Early on in my "MS career" I did a course on Fatigue Management run by allied health staff at MS, and one of the really interesting things they covered was that there are many different kinds of fatigue. A general "lassitude" that is common in MS was one they said was poorly understood. That's the main sort I believe I live with. Some people (not me so far) do have a neuromuscular fatigue that is made worse when they try to use a particular muscle and improves with rest. And I think they mentioned others, too. For what my personal opinion is worth, i suspect part of the "lassitude" issue is our brains having to "take the long way around" to do everything, because of a need to find alternative pathways to compensate for lesions in the way of the simplest path. I'm not sure I've worded that very well, but I often wonder if my brain is having to constantly compensate for the many, many lesions that I know are there on MRI, and this makes everything more fatiguing? I don't know of any evidence that this is true, but it makes sense to me. I've read everything I can find on fatigue, and so far as I can see, the best evidence is for aerobic exercise to minimize fatigue. That certainly does work for me, provided I can get stuck into it before the fatigue is too bad. But I know it's not the answer for everyone. One of the limitations in the available research on fatigue in my opinion, is the lack of an objective "fatigue measurement" with which to quantify results. Makes it very difficult to be sure of what has worked and what has not, particularly when it's not possible for a study to be properly blinded (a problem in exercise intervention studies). CFS/ME is a huge area about which I am not expert, but I have also often wondered if there might not be common mechanisms with MS fatigue. Wouldn't it be great if they came up with something that could improve it for all of us!

Yar, it would be great, but I suspect 'they' operate to a different agenda to us PAMS! from what I have gathered, MS research has been going on since the year dot, and all over the world, but no one is making a concerted effort to assemble all the results and drive a coherent program across the planet. Part of the problem seems to be that the randomised controlled trial has become gold standard for 'evidence based' medicine, and most of what happens medically in Australia seems to be driven by the American medical system - Largely American drug trials, largely American pharma companies, and American standards put out by the CDC and FDA. Would that be a fair comment? The problem with randomised controlled trials is the cost, so 'evidence based' medicine means promising but unmarketable therapies are ignored, and patients are having ever more fast and remote interactions with doctors, revolving mostly around the dispensing of pharmaceuticals, and perhaps missing out on the hands-on, investigative, observational and reflective medicine of years gone by. I long for a more collaborative approach, with a genuinely interested medico, and I wonder if you TUO or other readers feel a little bit the same way?

Hi again Lawrie, the idea of needing a true collaboration to manage a chronic problem such as MS is one I feel strongly about. I am very lucky to have both a wonderful GP and also a neurologist who I both like and respect (and who has said to me more than once that "you need to be part of this decision") so to some extent I feel I have this sort of relationship. There have definitely been times when I felt I couldn't access the care I needed as easily as I "should" have been able to over the years - and that is terribly frustrating and disappointing when you believe you would have been more accessible to your own patients in a similar situation! - but most of the time I am genuinely impressed by the relatively holistic care I get. I'm not sure if I am just incredibly lucky to have found great people to make up my own "care team" or whether I may be forgiving of the imperfections in our system through having a first hand awareness of how it works from the other side and what is involved in trying to meet everyone's needs with limited resources. Probably there's an element of both! But - while I am passionate about the need to work always to improve things, particularly for marginalised groups - I think we are actually very lucky with our health care system in this country. No doubt there are plenty of true stories of awful experiences (and hearing these is the only way providers can hope to do better) but when things go as they should, we get pretty great care. I am very, very grateful to be an Australian when it comes to living with a chronic illness! I'm sorry to hear you have not always had the same positive experience of receiving health care so far.

Re MS research: this is one area where Australia "punches above its weight" in a major way on a world scale. I am really impressed by what I know of the work being done in this country, from lab science to rehabilitation studies to big epidemiological studies to randomised (and other) intervention trials going on right here. I give a percentage of my income to MS Research Australia every year. In some ways this is "self interested" giving - and I'd encourage anyone who is working and affected by MS to consider doing the same.

Another great post TUO. Similar to Tanya, I'm still working full-time at the moment (to try and get that mortgage monkey off my back!), and yes I agree that 3pm is the toughest time! For me I've really just had to 'get through it' and on bad days I just keep a vision of my bed and comfy pillows which gets me through. Some days driving up my driveway is such a relief and a 'I made it!' moment. I had to smile when you spoke about "...sympathetic response such as “oh I know! I’ve been just exhausted since…….” because that's the same reason why I just keep my fatigue to myself. It's so hard to describe the difference between fatigue and general tiredness to people. I also had to laugh about you not being a 'Top 10 List' kind of person, as my next post will feature a 'Top 10 What Ifs' haha, but I appreciated that you can still acknowledge the positives that have come from MS such as friends and pushing over that “ladder of academic medicine". Loving your insights. Have a great weekend, Sam

Thanks Sam! It's so good to hear that both you and Tanya "get" that 3pm thing! I'm sorry for your sakes that you experience it, too, of course - but it's great to know I'm not the only one! Even when I travel, I can tell when it's 3pm local time without looking at my watch within a few days of arriving in a new time zone! This is one of those freaky MS things that actually made sense to me when I did some reading on body temperature. Apparently the daily "rhythm" of core temperature means that we are at our warmest right on 3pm. Go figure! So maybe most MSers who "enjoy" heat sensitivity feel a bit second rate most days at this time? In any case, thanks to both of you for confirming that there's more than one of us who does!

Wonderful Post. I mostly hate my fatigue. It has made me drop my hours at work, which makes me struggle financially but on the other hand, I can and do often just sit back and take in nature at its finest, I find this very therapeutic. People don't understand the fatigue we all suffer from. I've really given up trying to explain it. Can't wait for your next post.

Thanks Rebecca - and right back at you on looking forward to your next post! Fatigue sucks. There's no two ways about it. But fighting it or ignoring it simply didn't work for me. I had been living with MS for ten years before I really made what I think are the right decisions for me and cut my paid work hours. Despite the reduced income, I've never been happier! As Sam commented, the mortgage thing (or whatever other financial commitments are your responsibility) is a big one - and I think was a big part of why I pushed myself to work as many hours as I did for my first decade with MS. I was determined to get out of debt while I was physically able to work (and in retrospect I pushed myself ridiculously hard towards this aim!). So these days I have the luxury of relatively low living costs and the ability to cover my needs working part time. For now, I am able to do a lot of really fulfilling volunteering in my unpaid hours, with the flexibility to do it at my own pace and when I have the energy. Interestingly, as I've stopped striving for all the things that come with a high powered career and income, I've got really interested in the concepts of minimalism and "downshifting". I don't know if I ever would have stumbled over these if I hadn't been forced to slow down and contemplate what I really wanted out of life, but they make a ton of sense to me. A topic for a future post!

A great read about how you have managed your fatigue, by changing your lifestyle. Every persons fatigue is so different so its great reading about how someone else's affects them. Thank you for sharing :-)

Thanks Amber. Isn't it great how we feel understood and supported by others with MS, even though we are all different? Maybe there's something about "getting" that true uniqueness of each person's experience that makes peer support so helpful? Either way, I'm enjoying sharing my version of MS and hearing back from others. Thanks for being part of the process!

Thank you for taking the time 2 write this so I can show others around me who don't always understand how hard it really is sometimes trying 2 manage a 'normal' life!!!

You're very welcome, Lauren - I'm pleased to know that my attempt to describe fatigue resonates with some others out there! It's such a hard symptom to describe, isn't it? Thanks for commenting - it's great to have you here.

Thanks for the article. I too can relate to these levels of fatigue and have pondered their origin. No one has mentioned 'Low does Naltrexone'? I have been taking this medication for fatigue for over 4 years and I could not continue to work with out it. It has reduced my fatigue by at least half or more. The reasearch is not yet available and I hear that it does not work for everyone, but it works well for me. It was originally prescribed by the neurologist. It is expensive and difficult to source, but i won't stop taking it although I would cut back on work first if that were an option.

Thanks Lara. It's great to hear you've found something that works so well for you. I haven't tried low dose Naltrexone myself, but have heard from a few people that it can be really useful for some pwMS. Good to hear it's been a success in your case!