All of that has changed for me now.
Fatigue, the way I experience it, is more than feeling the need to sleep. First of all, it comes on suddenly and is not always related to how much I have exerted myself. Sleeping does not improve it, although the amount of much sleep I get can impact the severity. My fatigue is experienced through weakness in my legs, feeling like my limbs are extremely heavy, having a hard time concentrating on anything, feeling irritable, having difficulty making decisions, loss of motivation/interest, and – the most ironic one – sleeplessness. That’s right. My fatigue has been making it harder for me to sleep.
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| Fatigue |
This symptom has been affecting many parts of my life, such as personal relationships, my social life, and my general quality of life because I feel like I am not able to do as much as I think I should be capable of. Part of this is due to fatigue being so hard to explain. How can someone who has never experienced fatigue understand that I may or may not be interested in hanging out with them depending on how I’m feeling that day? How can my husband understand that the reason I don’t want him (or anyone) around really has nothing to do with him/how I feel about him? How do I accept that I am not a failure when I have days I literally cannot get out of bed? I always feel awful afterwards, but how long will people continue to accept my apologies? How long do I have to wait to feel “normal” again? And, really, what the heck is normal anymore?
I have had a hard time accepting that this is still a symptom related to my surgery because that was now ten months ago. However, the more people I speak to who have had brain surgery, the more I am beginning to realize that the healing process can take a long time, even after all the other side effects have begun to subside. Even after I look completely fine (although, let’s be honest, people told me I looked great a week after my surgery since I don’t have any scars to show) and people can easily forget that I had brain surgery.
Coping with fatigue has meant learning the different types of fatigue (cognitive/mental or physical), figuring out what my triggers are, and understanding my personal limits. I have had both cognitive and physical fatigue, although it tends to lean more towards the cognitive. This means that social interactions/mental work are worse for me than physical activity. That's not to say that I don't also experience the physical fatigue, though.
I have been able to manage walking to and from work plus walking the dogs and doing other types of activity such as yoga and volleyball fairly well for several months now, so I thought it was time to start adding more. I, unfortunately, started pushing myself too much with scheduling too many activities in one week or trying to add in more intensity and my body finally told me “NO” last weekend. We went snow shoeing on Saturday, travelling a distance of approximately 3 km (this is not a long distance for me, whatsoever, since my walks to and from work usually total 3 km). That evening, my body became incredibly weak and I was so mentally drained that I could not really focus on anything and could barely drag myself up the stairs to bed that night. At 9 PM. On a Saturday.
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| Snowshoeing: my new winter sport! |
Knowing my limits has become an integral part of managing my fatigue. I make a conscious effort to plan out my weeks regularly and set realistic goals for myself. This includes not scheduling too many activities into one day/evening, prioritizing activities, asking for help with certain things, and being okay with things that are less important maybe not happening (or happening at another time) if I do not feel up to it.
Keeping my activity level in the gentle to moderate range is something that is recommended, but I have had a hard time with this. I was an incredibly active person prior to surgery (played volleyball two nights a week, played ultimate Frisbee one night a week, walked most places, walked my dogs, did weight workouts whenever I could fit them into my schedule, etc.). Accepting that I am not back at that place yet is difficult. There are times when I feel great and can handle something a little more intense, but I need to be careful that I am not doing too high intensity too often.
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| Winter Walking FTW! |
Diet is incredibly important, and I feel like I have been really good about this one. Eating lots of fruit and vegetables, whole grains and adequate amounts of protein is recommended. I also eat small amounts often (mostly out of necessity due to my history with gastric issues). This helps to regulate my blood sugar levels and prevent low points.
Managing other issues – such as vitamin and mineral deficiencies – is important. I do think that part of my fatigue is related to my low iron levels, so I have been doing everything I can to remember to take my iron supplements when I am supposed to. I also plan to speak to my physician at my follow up appointment about whether or not I should increase my supplement at times when I would be losing more iron than usual (menstruating is a pain – in more ways than one).
Keeping the mind active – through puzzles and art – is something that I have yet to try to see if it will help with my cognitive fatigue. It is something I am definitely interested in trying, especially because I want to get back to my art projects that I put aside many years ago while going to school.
Managing stress and anxiety is something that I have been working on and, though I feel like I have made a lot of progress, I have been finding myself taking many steps back in this regard. My panic attacks were always at their worst when I was not sleeping after surgery and I have not been sleeping well for the past couple of months (partially because of my increased anxiety and panic attacks). It seems like an unending, vicious cycle at times. I am trying anything and everything to improve my sleep because I think it will make a world of difference. At this point, I have reduced my caffeine and sugar intake and completely cut out alcohol. I try not to nap during the day and avoid television/my phone for 1-2 hours before bed. I have been trying to include relaxing activities for at least an hour before bed (yoga poses, taking baths, reading, etc.). I use aromatherapy in the form of lavender scents in oils and sprays. I also have a white noise machine to fall asleep to.
As a last resort, I still take Gravol to help me fall asleep and keep me asleep. This is something I have been trying to avoid, though, because I am hoping to have children within the next couple of years and if I become pregnant, I should try to avoid Gravol.
I worry that I will never get back to “how I was.” I asked Rob what we are going to do if this is the best that it gets for me. His response was that maybe my attitude towards is not right and that I should try to stay positive. He said it almost sounded like I was giving up.
Although this really upset me in the moment – This whole process has not been easy! How dare he say that I am giving up when I have been working so hard! I'm allowed to have bad moments! – I do see where he is coming from. Thinking that this is how things are going to be for me, forever, honestly makes everything seem pointless. I am going to keep trying to take everything one day at a time. Looking back, I can still see all the improvements I have made. And I am hopeful that in another couple of months, I will be able to look back and see even more progress. I need to be, because otherwise it means that Priscilla has won. And that biotch can’t win.
At least I have these comfy dog pillows to rest on.
Diet is incredibly important, and I feel like I have been really good about this one. Eating lots of fruit and vegetables, whole grains and adequate amounts of protein is recommended. I also eat small amounts often (mostly out of necessity due to my history with gastric issues). This helps to regulate my blood sugar levels and prevent low points.
Managing other issues – such as vitamin and mineral deficiencies – is important. I do think that part of my fatigue is related to my low iron levels, so I have been doing everything I can to remember to take my iron supplements when I am supposed to. I also plan to speak to my physician at my follow up appointment about whether or not I should increase my supplement at times when I would be losing more iron than usual (menstruating is a pain – in more ways than one).
Keeping the mind active – through puzzles and art – is something that I have yet to try to see if it will help with my cognitive fatigue. It is something I am definitely interested in trying, especially because I want to get back to my art projects that I put aside many years ago while going to school.
Managing stress and anxiety is something that I have been working on and, though I feel like I have made a lot of progress, I have been finding myself taking many steps back in this regard. My panic attacks were always at their worst when I was not sleeping after surgery and I have not been sleeping well for the past couple of months (partially because of my increased anxiety and panic attacks). It seems like an unending, vicious cycle at times. I am trying anything and everything to improve my sleep because I think it will make a world of difference. At this point, I have reduced my caffeine and sugar intake and completely cut out alcohol. I try not to nap during the day and avoid television/my phone for 1-2 hours before bed. I have been trying to include relaxing activities for at least an hour before bed (yoga poses, taking baths, reading, etc.). I use aromatherapy in the form of lavender scents in oils and sprays. I also have a white noise machine to fall asleep to.
As a last resort, I still take Gravol to help me fall asleep and keep me asleep. This is something I have been trying to avoid, though, because I am hoping to have children within the next couple of years and if I become pregnant, I should try to avoid Gravol.
I worry that I will never get back to “how I was.” I asked Rob what we are going to do if this is the best that it gets for me. His response was that maybe my attitude towards is not right and that I should try to stay positive. He said it almost sounded like I was giving up.
Although this really upset me in the moment – This whole process has not been easy! How dare he say that I am giving up when I have been working so hard! I'm allowed to have bad moments! – I do see where he is coming from. Thinking that this is how things are going to be for me, forever, honestly makes everything seem pointless. I am going to keep trying to take everything one day at a time. Looking back, I can still see all the improvements I have made. And I am hopeful that in another couple of months, I will be able to look back and see even more progress. I need to be, because otherwise it means that Priscilla has won. And that biotch can’t win.
At least I have these comfy dog pillows to rest on.
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| Sadie Pillow |
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| Hershi Pillow |
