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It’s easy to forget many things — names, dates, high school math concepts, when to take medications, etc. But it’s even easier to forget these things when your mind is always foggy because you have a chronic illness. My brain is constantly malfunctioning, so much so, when I actually experience a clear, fluid stream of consciousness I often wonder what’s wrong. That is to say that I’ve become so used to the symptoms of my disease (myalgic encephalomyelitis / chronic fatigue syndrome) — or rather diseases (Lyme disease, POTS, etc.) — that when they actually give me some relief I feel a bit bewildered. And not in a bad way. I don’t actually think something is wrong when I feel better, but I certainly do wonder what happened. What changed within my body to make me feel better? And please, quick, someone tell me how to replicate that change or at least ensure I don’t switch back.
But this feeling also pertains to when I start to feel worse, as I have lately. Up until two months ago, my health had been steadily improving. But at some undetectable point in the last two months I started to regress. I suppose it started when I could no longer put my feet on the floor and stand while leaning on the side of my bed. But more recently I have started “crashing” with even lower amounts of exertion. The saddest part about all this is that I just bought a wheelchair (with the help of many wonderful people) but I haven’t been able to get out of bed in the last two weeks to use it. It’s one thing to have your health take a dive, but it’s an entirely different, and much harsher, issue when you buy a $3,000 wheelchair that you were just getting the hang of, only to lose the ability to use it. It’s like buying a Ferrari and not being able to drive it. Well, no, it’s not like that because a wheelchair definitely isn’t a sexy Italian sports car, but I digress and hopefully you get the point.
It’s hard to accept that my health may not stay on the relatively linear path it has been on, but it’s also easy to forget that this has happened to me before. Many times. I can’t even count the number of times my health has ebbed and flowed over the years. But even more so it’s easy to forget precisely what it felt like to be at my sickest point.
Perhaps my forgetfulness is a coping mechanism, or perhaps it is indeed just forgetfulness, albeit a mental lapse that only accompanies a chronic illness like ME/CFS. Either way I forget exactly what it was like to be so sick. I remember being stuck in a dark room, sure, but I don’t remember the conglomeration of emotional and physical feelings that encapsulated that moment in time for me. I remember that I couldn’t eat solid food, but I forget what it felt like when I tried to chew, or even thought about doing so. All I remember is that I physically could not eat, and if I know myself at all, I know that the pain, and other types of misery, that kept me from eating must have been immense, certainly unbearable, because I like to eat and I don’t like to be told “no,” especially by my own body.
This is all to say that forgetting how it felt to be so sick was not a simple thing, and perhaps that’s why it’s hard to remember. Externally my body was almost entirely motionless, but internally there was so much going on it would have been impossible to describe it all, let alone remember what it felt like today. It would have been like standing in a crowd of a thousand people, and then afterward, trying to remember what each person’s face looked like. The truth is nobody could remember everyone’s face in such a crowd because one could only see a fraction of the faces. The same is true for the war that was waging on inside my body. I can’t remember exactly what it felt like because I wasn’t able to describe everything I was feeling at the time — both because I was aphonic and because it was overwhelming — in fact, I probably wasn’t even aware of everything I was feeling and I definitely wasn’t aware of everything, or even most of, what was happening physiologically in my body.
Now, while I am still far beyond that level of sickness, I find myself in a familiar and scary position — bracing myself as my health declines, hoping that the bleeding stops soon, or at least lessens before things get too messy. It is a situation that reminds me of how sick I’ve been, but not of what it felt like. The truth is I don’t want to remember that feeling because I know the only way I can truly remember it is if I become that sick again.
A couple days ago I sat up in bed and hung my legs off my bed. I saw the blood rush to my feet, turning them purple. It was something I have been doing for months with relatively mild physical repercussions. But my most recent attempt lasted all of a minute before I became sicker and had to return to my pillow. And even worse, I spent the following hours recovering in a horrible malaise. A few short months ago I was able to do so much more with lesser repercussions. It is humbling to acknowledge such a comparison and a reminder that although I certainly could be better, I could also be much worse, and being stuck in the middle, well, it isn’t all that bad.
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Hi jamiesonwrites! I feel your pain and recognise your symptoms as I am carer to my daughter who is having a relapse currently. Keep strong, there is so much research being done and I am hopeful of effective treatment before too long…….x
Thanks Janet!
I too recognise your emotions Jamison. Many times over the years I appear to be making headway …. usually for no reason I can fathom …. and then start to realise I’m sliding back … again for no apparent reason.
I actually find the ‘sliding backwards’ more difficult to deal with emotionally than when I’m back in full hibernating mode. I feel as if I’ve been given a tempting glimpse of my possibly more healthy future only to have it snatched away from me.
Like you though, I do try to stay positive … not easy … but I try to gauge my ‘progress’ against my very worst times.
Thank you so much for sharing. I do hope that you start to pick up again and get back into your wheelchair in the not too distant future.
So sorry to hear this Jamison. This can be one wicked disease – stay strong. The tide will turn and you will get back in that wheelchair.
Thanks Micky!
“I don’t like to be told “no,” especially by my own body” – exactly. And yet the limitations keep me from doing most of the things others find pleasurable.
I struggle to write – and the commitment I’ve made to myself is two more books – a ludicrous plan for someone like us. But I managed to write the first book, even if it took me 15 years. I want people to be able to read, in the background of my novels, what it is for someone to live like we do. ME/CFS is not the main theme, but it colors everything else. Nothing else seems worth the agony.
Last week I had my second appointment at the Complex Chronic Disease Program (CCDP), British Columbia Women’s Hospital & Health Centre in Vancouver with the physiotherapist. This is not the typical physio at all. Your article has brought home some key points from my sessions with her. When in a crash, it’s all about baby steps and not pushing our body. Find out how long I can do a simple task, (ie sitting/standing) without feeling any negative effects and then stay within those means. When I have a good day, still stay within those means and avoid the attempt to do more. Here lies the challenge for me and I’m certain I’m not alone, on good days I want to do more. Perhaps this is what causes me to crash. I had 10% energy when I saw her a month ago and I crashed shortly after that and my energy level is probably half that now. We calculated my anaerobic threshold and with the crash, my body won’t stay below that threshold, which just makes everything worse. At least I’m getting more education about living within my means that any of my research has turned up.
I hope you’ll gain your strength back to get into your wheelchair again and beyond.
Stay well.
Denise
Sooke, BC
Canada
Thanks Denise. I’m amazed at how many people with this disease are from BC. Stay strong!
I’m sorry for your slide, but hoping it is temporary. Thanks for writing! One of the hard part with these diseases (my daughter has POTS) is not knowing when or which direction.
So true. Thanks Sherri!
Jamison: Totally feel every word you write. After 20 years of this I cannot figure out how to keep on. No physician understands anything with which I deal. I cannot make my appointment to my cardiologist because, well, I cannot get out of my apartment. This is Boston. Feel betrayed. Should have stayed in NC.
I’m sorry, friend. ((hugs))
Thanks Alma!
Dear Jamison,
Don’t give up on yourself. Your body is telling you to slow down a bit. Ik can imagine that you want to ride in the wheelchair and you want to see your health in a more ‘action’related improvement. It looks like that by not remembering how you felt when you were at your worst, that you are making mentally a big step here (at least I hope so). You are letting that feeling go. I am still seeing it from a positive point of view and hope you get strength out of it. Your mind is letting go your worst moments of suffering and is making room for the next level of improvement!
Hang in there Jamison and try not to loose faith in your own body. Focus on the things you have already in your pocket! Thanks for sharing! 💪🏼💪🏼
Thank you!
You’re right , but brain fog means also not pay attention to our beloved friends or person. I mean, loosing humanity ;(
Thanks!
This is such a cruel and heartless illness. The way it goads you into doing a bit more when you feel just a tiny bit better then it slams you right back down. I have certainly pushed myself much farther than I should so many times and then paid dearly for it for such long periods of time. Then other times you really didn’t do anything to deserve such an assault. Very confusing. You have such an amazing way of describing things and I really appreciate your writing. Hang tough my friend. There will be better days ahead for us all I hope.
Love the picture above. It kind of says it all.
I’m sorry to hear you’re flaring. Hopefully it will reverse soon. I can only imagine how eager you are to incorporate the wheelchair into your life. You know oddly or interestingly enough, depending on how you look at it, what we experience with the loss of the detailed memories of the illness could be compared to childbirth. Weird huh? Mothers go through these horribly painful experiences, some over and over, and in time, the mind only remembers the physical actions of the day. Human minds are fascinating and also, I believe, looking out for us. Letting go of the worst of it all, what a blessing. Wishing you an upswing, soon, like yesterday!
Jamison,
I thank you again for your sharing. My daughter is in her second episode of ME/CFS. She was 16 the first time and fully recovered until 3 years ago. When she was 16 I consulted with a rare CFS specialist from Tufts medical school. He
informed us that recovery from this illness is not linear but an uneven path of good and very ill periods. We found this to be true for Amanda. When she began to have “good” days the rebound times were more discouraging than her most ill period. The contrast of feeling better and growing hope was dashed by a return to her very ill baseline. This uneven path did lead to a full recovery which we hope for with her current illness. I send hope your way as well. Your writing shows courage and the brave spirit needed to maintain the push towards health.
Thanks Susan! I hate these relapses but they’re just part of the battle.
Hi Jamison. I am really sorry progress is currently eluding you. Your writing is still rocking! I hope this doesn’t seem insensitive, but I kind of love webcomicname.com in a misery-loves-company kind of way. This one in particular has been a go to when I get my hopes dashed.http://webcomicname.com/image/164256639079