People sometimes ask me about my fatigue and occasionally question the difference between it and tiredness. Some even question whether it is real, I can assure you it is and at times really difficult to cope with, mostly it is a minor irritation. This week it has shifted from being a minor hassle to preventing me from doing all but the very essential self care things we all need to do to survive and writing this blog entry, though this has been done over a couple of days rather than the normal write in one go as normal. In addition to writing this to explain to others about my fatigue, I am also writing it now to help me clarify my thoughts about the fatigue and attempt to describe the different degrees of it to you and myself.
Prior to my treatment I probably would not have differentiated between fatigue and tiredness, now though I experience them very differently. I can be fatigued and tired or fatigued and not tired or just tired and they all feel different to me. I remember reading a Macmillan booklet about the after effects of the treatments and another all about “fatigue”. When I read them at some point during my treatment I didn’t take a great deal of notice because I didn’t feel fatigued at the time, or more accurately did not think I felt fatigued. I felt ill due to the Chemotherapy and Radiotherapy so this masked the fatigue, it was lost in the feelings of malaise I had, well actually I felt like death warmed up and probably looked it.
As the recovery period from the Radiotherapy and Chemotherapy progressed and I shifted into convalescence I didn’t really think about fatigue that much. Just saw it as me being as the saying goes as weak as a kitten. Also as I wasn’t sleeping well I thought my need for naps throughout the day was due to not getting enough sleep and in a big part it was. There was I can see now an element of ongoing fatigue which I didn’t really recognise or ignored. Also my fatigue manifested itself slightly differently then to now, this though might be because I didn’t recognise the early signs and got more fatigued before resting as I try to do now. Of course this isn’t always possible and I carry on and then can have a deeper bout of fatigue or rarely carry on and not suffer later. When I first noticed the fatigue and identified it, I was feeling as if I was going down with a cold or another bug, sometimes I would get shivery as if I had a temperature, other times I would be achy, I would feel the fuzzy headed feeling you get as you become ill.
When I returned to work 6 months after the treatment ended I was still very weak and in hindsight not ready to return to work but at that time I wanted to and felt I needed to for myself and for my team. Going back, I was fortunate in being given strict instructions by Occupational Health Team to have a slow and gradual return. Even with this I felt excessively tired after a couple of hours of working and just about managed my 3 days of doing 3 or 4 hours initially. This was slowly built up to full time and I extended this build up by taking a week or so of holiday. Then we entered the summer holidays when work is quieter and I could ease myself back into full time work and did. I also had 2 and a half weeks of mid September to early October. I then worked through to mid November when I started using annual leave days to work short weeks before doing a really full on week where I worked two very long days and the other 3 days I worked over my 8 hours and ignored the warning signs and struggled on getting more fatigued and unable to function properly.
During the period after my end of summer break till end of November I did practically nothing but go to work, one short ride and one medium length ride. I felt exhausted all the time and would come home and collapse, often sleeping for an hour or so, then cook and eat before going to bed before 10 and sleep through to the morning and struggle to get up. Weekends were a little different, instead of work I would shop and do a bit of cleaning but mostly would be sat watching TV blankly and generally being a couch potato. I would force myself to go for a walk or a ride in the morning when I had more energy and did feel that doing some exercise helped me overcome the fatigue to a degree. I had tried doing more riding and whilst I was working part time this was possible, however once I was full time again it was not possible. I struggled to find a balance between exercising and resting that helped me best overcome the fatigue, I never achieved this and eventually got to a point of near total collapse when my denial of the problem could no longer work. I remember thinking I was suffering with a bug but hindsight tells me it was more likely to be an acute fatigue bout when I went of sick. I got up and feeling rough got in the car to drive to work, going about a 100 yards when I decided I wasn’t safe to drive so went home and called in sick, not returning for 6 months and then only very part time so I could tie up a few loose ends before retirement.
What I then identified as going down with a bug symptoms did not get worse or subside as you would expect with an illness, I just felt the same level of awful for days. After a couple of doctors appointments and discussions with my GP including some tests we decided that I was exhausted and needed to rest so was soon signed off for all of December. We agreed that I would exercise lightly, so would only go for short rides, around 10K or so and rest for the rest of the time. So around mid December this was in place and I was feeling a little better and a bit stir crazy as I hadn’t been for a ride for several days, went for a ride despite feeling fuzzy headed and due to not thinking clearly was riding very close to the kerb, so when I looked over my shoulder to check for traffic before turning right my front wheel drifted very close to the kerb, so close that I couldn’t turn it at all to move out of the kerb. I slowed and thought I would be able to stop before anything untoward happened. What I had not accounted for was that the road was slightly curved there and my wheel just clipped the kerb and as you know I went over the handle bars and I broke my collarbone as I landed.
A plus side of this I thought at the time was that it meant that I had plenty of time to overcome my fatigue before returning to work. However, I didn’t really get over my fatigue and eventually was offered early retirement. What it did do was allow me time to work out what was fatigue and what wasn’t fatigue. Which is what this post is meant to be focusing on, despite the long preamble, setting the scene so to speak. I am now 3 years post cancer treatments ending albeit with the cumulative affects of two collarbone breaks and subsequent surgeries and still experiencing bouts of fatigue, some of which I can connect with trying to do too much, others though seemingly come from nowhere.
I am now more able to identify fatigue and see it as having different degrees, sometimes being able to correctly decide that doing some exercise could help but not always. I don’t go out cycling or drive when I am really fuzzy headed, the bike accident bashed into my rather dense and sometimes stubborn head that is not sensible. This fuzziheadedness when severe can make doing simple tasks at home a real challenge, but I think I am getting ahead of myself here. First I think I need to describe the different type or degrees of fatigue I suffer and compare them to things that might make sense to you.
All of you will know the feeling of muzzy thoughts that you get as you go down with a bug, some of you will know how jet-lag feels, others will know how it feels when you miss a nights sleep. Well my experience of fatigue can give feelings similar to all of these. Sometimes there is a physical fatigue alongside the mental fatigue and rarely I feel mentally fine but physically weak and/or have aching limbs. Sometimes the fatigue is preceded by feeling tired whilst out and doing something others it isn’t. The only consistent thing is that it keeps coming back and surprising me when it does. I keep thinking I have overcome it and gradually start doing more over a couple of weeks and then get floored by it again.
So here is my personal classification of fatigue, this is how I feel it is today and I might change it with time and further thought. I have broken it down into five degrees and there is an overlap between is level. All very subjective and not very scientific I know but hopefully it will give you an idea of how fatigue affects me. I don’t know if other experience it in the same way or not.
Mild fatigue for me is just feeling like I have a slight hangover after a late night out or I had slept badly, feel a bit lethargic but nothing more untoward, I might feel like I need an afternoon nap but otherwise am fine. Doing some gentle exercise or short burst of strenuous exercise can sometimes overcome this level of fatigue.
Low level fatigue is when I feel slightly fuzziheaded like you are a bit jet-lagged and very tired from a journey. The difference between this and tiredness is that a good nights sleep doesn’t rectify it. You are able to carry on pretty much as normal, concentrate OK etc. Again exercising can be helpful here.
Middling is like very bad jet-lag and you have missed a complete nights sleep due to being on a night flight ( I can’t sleep on a plane). It is hard to get motivated and it can be hard to focus on something for an extended time, your mind wanders and your thought processes feel sluggish, as if you are thinking through treacle, probably not a good idea to cycle but walking should be fine.
High fatigue is the feeling you have when you are getting over a bad cold or flu etc., you feel weak, mostly thinking seems like hard work and doing anything can be exhausting. You feel that you should be able to do more than you are able to do but can’t, concentrating is difficult and you lose your train of though more often than usual. You feel you can just about manage a walk to the shops and back to get a few essentials.
Very high fatigue is the feeling you have when you are going down with flu or a heavy cold but without the high temperature. You feel achy and lacking in energy, it is hard to concentrate and generally feel awful. You can just about function for short periods of time.
Extremely high fatigue all you want to do is lie down and sleep but often you feel like you have got overtired and have become unable to sleep so you spend the days and nights dozing,
I expect there are some of you thinking, well I feel like this now and again when I get tired, the difference for me though is that with fatigue it lasts days not hours. I do get tired and whilst there are similarities there is a qualative difference in how I feel, one that I am finding hard to articulate at the moment. Possibly because I am feeling fatigued at the moment and would classify myself as being shifting between Middling and Very High. Sometimes when fatigued it feels very consistent at others, like this time the level of fatigue varies a bit, this can be as a brief wave or an extended time of being in a higher or lower level of fatigue. When I started this entry and each time I return to it I am in the middling level and after writing for a bit I am back at high or very high and need to rest before carrying on writing it.
On top of the fatigue I do get tired more easily than I did before and if I am busy will get tired and will need to rest for a bit, get renergised and then carry on. This sometimes feels like the post lunch droop most of us get as we digest the meal. For me though this can happen a few times in a day and is not connected to eating. Like all of us I can carry on what I am doing and get through this short period of tiredness. Sometimes I think getting a few of these over a few days is a precursor to a bout of fatigue, others I don’t recall any of these periods of tiredness. For a time I had a theory that a bout of fatigue would follow on from a few days of being busy and then 24 hours to 48 hours later I would be fatigued. Whilst, this might be the case sometimes, there are time when I am busy doing things and I go straight from feeling OK into being fatigued, which is the case this time. I had a fairly busy social time, the stress and relief of the recent X-ray to see if a persistent cough and the ongoing fatigue could be connected to lung cancer, fortunately it wasn’t. I started my volunteering this week too and on the way home from that I felt tired, which didn’t seem unexpected to me. However, even after resting for a couple of hours, with a snooze included I felt no better and if anything I felt worse, I realised that I was entering a bout of fatigue.
I am now over 48 hours into this bout and there are no signs of it subsiding yet, recently the pattern has been a bad day or very high fatigue day, followed by a medium fatigue day, so far I have had two days of mostly high fatigue with occasional hour or so feeling like it is very high with periods of middling when I have come back to write the blog. I am not sure why the fatigue bout is extended this time, if I did it would be helpful because I could make changes to avoid it recurring. And before some of you ask, no I haven’t got a bug, temperature is normal according to thermometer. Well I am going to end this entry now and post it. Writing it whilst fatigued has been helpful as it has allowed me to examine and thinking about the impact of the fatigue as I feel it and I might add to this blog entry, which is extremely rare for me, I think only once or twice have I added to blog entries before. Occasionally, I will go back and edit to correct typo etc., making other changes does not happen. So I will end this bit of participant observer reflection of my experience of post cancer treatment fatigue.