Hitting The Wall – Post Sepsis Syndrome
Hitting The Wall – Post Sepsis Syndrome
The phrase Hitting The Wall – Post Sepsis Syndrome will resonate with ALL sepsis survivors. In fact I’m not really sure I would need to explain to them what I mean by it, but I’m gonna write about it anyway.
‘You’re going to be very tired after this’!
That’s a phrase I heard a couple of times in hospital from the medical team, but that was all. No elaboration on what exactly that meant – probably because unless you have first hand experience of it, you might not actually know! So I had no understanding of how absolutely and utterly wiped out I’d feel for days, weeks, months and probably years after Sepsis (I’m currently 6 months Post Sepsis as I write this).
Its the extremity of this ‘tiredness’ and fatigue though – it is chronic, it is chronic fatigue. You just don’t ‘feel tired’, its like all of a sudden it hits you bam smack in the face and your whole body is affected.
It’s like I’ve been filled with lead!
It’s like I’ve been hit by a bus!
It’s like I’ve run head first into a brick wall!
Sepsis fatigue takes your breath away, your whole body aches, you feel heavy like you are weighted, you can’t move, you don’t want to speak (and I love to talk) and you are just totally and utterly exhausted.
Other fatigue
Now I have to say that I’ve experienced extreme fatigue before, perhaps not quite as severe but equally deliberating. Years ago in my early 20’s when I was recovering from chronic Irritable Bowel Syndrome and had lost loads of weight, I took me around 5 years to build myself back up. I often had ‘fading spells’ in the middle of the day and sometimes felt faint. My mum always said that I ‘lacked stamina’ but I now know looking back that that was also chronic fatigue. You can read about my IBS struggles HERE.
During both my pregnancies I also suffered from extreme exhaustion – I know lots of mums can relate to this. Where you just feel utterly wiped out. This feeling is close to Post Sepsis fatigue but nowhere near as severe. There were times when I was pregnant that a wave of exhaustion would hit and I would literally feel like I needed to fall asleep right then on the spot.
Post Sepsis fatigue is different, I would go as far as to say sometimes it is paralysing and its the ‘weightiness’ that accompanies it. It does literally feel like I’ve been injected with lead and that I’ve ‘hit the wall’.
#hittingthewall #postsepsisfatigue #sepsisvitality #sepsisrecovery #lifeaftersepsis #ibs #ibsvitality
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At 48, I became septic after emergency surgery for a ruptured colon. Then, ICU for five days, where I experienced extreme hallucinations, requiring heavy sedation. This was followed by 21 days in the telemetry unit for heart failure, renal failure and pneumonia. I also had a colostomy bag.
During this entire period, my heart rate remained at 120 bpm, and blood pressure at 190/130+. Consequently, my heart was deliberately stopped and restarted to “reset” it to a somewhat normal bpm.
Also, during this time, it was discovered I had kidney cancer, which required a partial nephrectomy to remove the tumor.
Upon leaving the hospital, my heart was functioning at 30%, and lungs around 50%.
It has been 5 years since all this occurred. While my heart and lung functionality have mostly returned, I continue to experience PSS symptoms, including:
• extreme fatigue
• insomnia/nightmares/extreme night sweat
• leg pain/cramps/joint pain
• skin issues along the 13 inch scar on my abdomen
• headaches/ocular light sensitivity
• depression/mood swings
• shingles – recurring
• DVT blood clots – yes plural
• breath shortness and rapid heartbeat….and so on.
Being a guy, people, including my wife, tell me to suck it up, exercise, normalize, move on, put it behind me. And even the recent DVT I’ve experienced has been suggested to be the result of my perceived inactivity, though I remain in my target BMI, and work quite hard on our small horse ranch.
I am an IT programmer and composer/pianist, and work 50-60 hours a week. However, I find myself often mentally overwhelmed and physically consumed. At times, I am, quite literally, unable to go on.
Please don’t get me wrong, I feel so blessed to be alive and with my family. Everyday is a gift, and I know that. I only wish that my state of being was taken more seriously, with more empathy and compassion. I feel isolated and on a very, very private island at most times.
Thanks again for this blog, and for the opportunity to reach out for insight and understanding.
Dale ?
Dale,
Hello my name is Jim Taylor. I am saddened to hear your story as.I too just recently went through sepsis and a 27 day stay in the hospital. That all started 7 weeks ago and.I am barely walking. I’m was literally climbing a mountain 2 days before it got me so like you I too am normally an active person. Now I’ve been diagnosed with Rheumatoid arthritis and am on cancer meds to treat it. What stood out in your article was the fact that you don’t receive a lot of empathy. I get this from my wife as.well. It’s mostly an underlining thing and not so much an. In your face suck it up thing, but an eye roll when I ask.for.something or irritation that she has to “do it all now” attitude and just not much empathy except for the occasional “I’m sorry your sick” comment. We both work full time and during the week I am alone which I actually enjoy except for trying to fix something to eat which is very difficult. I also am a musician and.used to write songs and jingles.for.local companies. I play guitar and.was teaching myself banjo but the left wrist is so.painful and.swollen from either.the sepsis.or RA, It’s virtually useless. My job as an hvac tech at the hospital.now.is.in question as I.don’t know when.I.will.be able to return. I just wanted to let you know your not alone brother. Hang in there and write me.no if you want.
Jim
I will soon be 80 years and although I have several chronic medical problems that I take medication for, I am relatively good health. I’ve had a number of serious surgeries without serious complications. I have taken prednisone for many years and take Prolia injections twice a year for osteoporosis, I know these medications can increase my risk for infections, but fortunately nothing life-threatening has ever happened to me until 2 months ago. I hadn’t felt well for two days, but without specific symptoms. At a local restaurant I lost consciousness and was taken by ambulance to a near-by ER not attached to a hospital. Apparently I was very dehydrated and it was difficult to start IVs that I needed. In an effort to start an IV, someone inserted a canula into my right femoral artery instead of the vein. This information was not passed to the hospital where I was admitted. It was determined that I had sepsis from a UTI although I had no symptoms for the UTI. I was transferred a Level I trauma center ICU. I do not remember any of this happening. The following day, I was improving after receiving IVs and antibiotics. The staff began removing the IVs that I no longer needed. When the canula was removed from my right femoral artery, the nurse held pressure for 10 minutes and applied a pressure bandage. During the night it became obvious that I was bleeding from the artery as a bruise was growing in my thigh. The night nurse kept outlining the area with a pen to see how it was growing. The following morning a vascular surgeon came to check the area and thought that maybe the artery had be nicked while the canula was inserted. He thought pressure would take care of it, so a special device was applied to continue pressure on the area. Unfortunately, the size of the bruise kept increasing so an ultrasound was done to determine what was happening. It was found that I had developed a pseudo-aneurysm on the artery. This meant that the artery was bleeding and the clot that was forming was staying attached to the artery continuing to bleed. After a Pick line was inserted, a mad dash was made to the operating room where the vascular surgeon repaired the artery. All during that time before surgery my blood pressure was going down and down and I was given a couple units of blood in the surgery. I was nearly unconscious while rushing to surgery. It turned out that the canula had not just nicked the artery, but it had been inserted into the artery instead of the vein. I went into the hospital with sepsis from a UTI and developed hemorragic shock. I nearly died twice within 3 days. Since I had no symptoms of the UTI, I am fearful that something will happen again and I won’t have symptoms to give me warning. I’d always done well with infections and surgeries before but now I am fearful of it happening again. I am so fatigued that I can hardly move. I’ve developed a pain in the calf of my other leg that has not gone away. A DVT has been ruled out there. I can’t concentrate. I don’t want to leave the house, especially to go to the grocery. My husband has vascular dementia so I can’t really have a discussion with him about my concerns. I am not usually like this. I don’t always have a lot of energy, but I’m involved in scrapbooking and genealogy. I’m taking Cymbalta now. Don’t know if it will help, but don’t know what else to do. I feel so depressed but there is another serious problem in a family member, so i don’t feel that I want to burden someone else. I guess I just want some magic to come along and make things better. I want to be happy and I know I must do that for myself, but I don’t have the motivation or the energy to help myself right now.
I’m so glad to have come across this blog/site. I’m 53 (just turned last week) and I was in septic shock 2 1/2 years ago. I not only empathize, but sympathize and truly face all and everything that I’m reading everyone else is feeling, dealing with and facing, including, but not limited to “NO ONE BELIEVES ME!” I find that the most difficult, sometimes either brings to my knees crying, other times causes stress and anxiety like I’ve never known before feeling. I went into septic shock after a cut in my intestine during a surgery – they didn’t know they cut it and I was discharged, found 20 hours later at home in septic shock and needed urgent and immediate, critical surgery – ended up on life support and in an induced coma for 18 or so days, and then the nightmare began.
I not only have had to contend with the shock of waking up in an ICU being told I’d been there for nearly 3 weeks in a coma near death, with tubes in my chest, stomach and neck, but I was also cut pretty badly straight down my entire core, because I had to be wide opened so they could not only repair my intestine, but wash out and clean out my entire cavity, which by then was filled with muck … but I also woke up something not feeling right (emotionally, mentally and PHYSICALLY aside from the pains of the scars and tubes).
2 1/2 years later, spending all of this time running from one doctor to another, NO ONE listening to me, NO ONE taking me seriously, NO ONE wanting to go near my physical scar to repair or fix it, because it’s killing me, but NO ONE listening to all of the other issues I have, or rather than sending me full all over physical and occupational therapy, just telling me how lucky I am to be alive and to use a cane. I was a pretty active 50 year old, mentally, emotionally and physically more like a 30 year old – and now they want me to use a cane, rather than get me into PT and OT to see what we can get better? And to make matters worse, NO ONE will admit to, or document, that they believe it’s from the Sepsis. And not just Sepsis itself, but SEPTIC SHOCK, so I had all sorts of other issues going on, and for weeks while in the ICU.
I FINALLY found an Neuro who not only knows, but believes in, the after affects of Sepsis and I nearly cried when he told me about it. He told me I’d be fighting an uphill battle due to how few (I’m in the U.S.) doctors even know about PSS, let alone believe that it’s true – so getting the actual help “we” sepsis survivors need is super difficult and literally like a daily and constant fight, it’s exhausting on top of the exhaustion I feel from the symptoms itself. Cognitively I feel that I’m either no better at all, or that I’ve gotten a bit worse (remember 2 1/2 years ago already). There’s been no improvement cognitively and memory wise the same – though at times it all feels as though it’s getting worse. My biggest problem (well untrue, there are many big problems – so one of my problems) is “tasks.” Due to how beat up my body was from the surgeries itself, coming home from the ICU and getting through each day was itself a task. Everything that needed to be done had to be assigned lists of tasks in order for me to get it done, because a) I had to avoid touching specific areas of my body and b) I felt like I was in lala land and was pretty much in absolute shock (literal shock, not just a use of the word). However, more was going on and I knew it. I kept asking for a Neuro and no one would send me, making jokes about age and losing keys, and how “this happens at this age,” etc., which would infuriate me, because I never had these issues before and it doesn’t run in my family. My mind was sharp as a steak knife, on top of everything, and extreme multi-tasker and organizer and suddenly, the thought of cooking became a task filled with 100 steps just to get it done, which overwhelmed me, so I didn’t cook. Everything became a task that had 100 steps to get it done, so I stopped doing nearly everything, or just do it a lot less now, as in a LOT less now. My Neuro, who thank God believes in PSS, but has the personality and bedside manner of an ice-cube, which is not helpful, because all of this is extremely personal and very emotional, as anyone dealing with it knows – had said that it’s likely due to my brains processes slowing down. Yet, I can drive without a problem, I can type without a problem, so I don’t get it. I don’t get much of anything.
I live alone (divorced, no children) – my elderly father is in NY – I’m not, my older sister (57_ is there too) and they simply do not get anything I tell them. If I hear “why don’t you leave your house, why don’t you go for walks, why don’t you go here or there or do this or that, or that it’s just a matter of pushing myself or getting used to it again” I’ll scream, and have). It feels like no one is listening to me, or listening without hearing me. They just don’t understand what I’m going through. I’m easily confused, easily overwhelmed and more. Oh, and the kicker? I had MILD ptsd and anxiety from 9/11 (there) and then a minor (literally) cancer in 2012, totally beat it easily (blessed with no treatment other than removal of my thyroid), then the passing of my mother, then the passing of my dog and both were very tragic situations. I had normal ptsd and anxiety under those circumstances and was gearing up to shake it all off, get myself together and start looking for work again and get back to life … and then the surgery that caused this event took place. So now, I have FULL BLOWN PTSD, my anxiety grew to generalized anxiety which is the absolute worst case of all anxiety and my stress levels are through the roof … and I keep hearing, well you had these issues before. NO, before I was an average person with average ptsd and anxiety due to tragedies, but functioning normally enough to know that I needed to get into therapy to talk it all out and then get my butt back to work and start living life again – and NOW? … NOW it’s PSS PTSD and PSS Anxiety and that’s an entirely different ballgame, as you all know, but the doctors will NOT listen to.
I’ve been alone in this (neighbors care, some are very observant and see what I’m struggling with more than others), but for the most part, I’m locked away inside of myself alone in this. Body aches, body weakness, sluggish, displeasure, trouble walking (or having to keep my eyes on the ground to make sure there’s nothing I’ll fall from, because I trip on everything), petrified of stairs, because I’m petrified of falling, because it happens – sometimes I feel like my knees are buckling – my poor dog and I used to walk 3 or more miles a day – now, for the past 2 1/2 years, she’s lucky if we’re gone for 10 minutes and I stay in my community most times to make sure that if I do get hurt/fall, someone will see me. And, she’s a big and energetic dog, so she pulls when she sees people and I don’t have the strength to keep up with it, or the mental and emotional desire to – it’s yet another task that I have to fight through.Just about the only trouble I don’t have doing anymore is typing (obviously and without me understanding why – because reading confuses my mind), driving (which I totally don’t understand, because multi-tasking in all other areas of my life overwhelms my mind) and sleeping (which makes sense, because I medicate myself to sleep).
I’ve got a double whammy going on. I have PSS, but also have the physical aspects of what had to be done to save my life from the Septic Shock going on, so I’ve been living in the world of doctors for 2 1/2 years and that in itself is exhausting and “going nowhere,” so I have to contend with that, and this? And every doctor tells me to walk more, get more exercise … and I just want to yell again and say do you get it? My mind is not playing along with me! I didn’t lost my logic, so logically I know what I should do, but while the logical part of my brain is working well, the action part of my brain is in the basement.
I can go on and on, but have already written one of my walls of texts, my books as my friends and I laugh about, so I should stop here. 2 1/2 years in – I read the post of someone who’s been in this far longer than I – and I wonder, is there help? I have short term memory loss, which is driving me crazy – I forget words, I panic, and so much more. Actions – I’m so glad I just used that word, it’s a word I’ve been looking for, for 2 1/2 years … I’m having trouble with actions. I apply a task to everything and then the actions under the tasks are the things I’m struggling with (as well as physical fatigue and pain). What do we do next? Who do we see next? How do we get heard?
Signed – post-septic in Orlando
Sarah, thank you for this post! I know exactly what you mean, though I usually thinkof it like this, “Oh no, someone has turned up the gravity again!”.
I was being treated for breast cancer and the first cycle of chemo went well. The second cycle did not go as well, and I developed necrotizing fasciitis (flesh-eating bug) and sepsis. Amputations, a month in ICU and nearly 3 months in hospital. When I got home I had intensive physio and counselling and did everything I could to get back to work. Four years later, I still have episodes of bad forgetfullness, extreme fatigue and pain and the doctors can no longer help. So very glad to know I am not alone, that this is a real syndrome. For a long time I was scared it was just me, going crazy. This cheers me up. Thank you and all the best to you and all the people who have posted.
I am a college student. I was in the middle of an internship when I was admitted for sepsis, among other things(it was a result of an UTI/uterine infection from a sexual assault). The place I am interning at is very patient. I tried to go back after being home from the hospital three days, but ended up leaving work in an ambulance. I am scared. Plus, I can’t seem to think as well, and this is vital because I am in Electrical Engineering; this requires continuous thinking and problem solving. You don’t just learn a set of skills and keep applying them. Hoping to go back the middle of this week. It will be two weeks since I discharged. I have to get this internship done, or I can’t graduate. I am waaay too young for this!
Dear Julie, I’m sorry that this has happened to you. Please take care of yourself. Even though you are young, recovery from sepsis is not something that you can bounce back from immediately. Brain fog and cognitive issues, mobility issues and chronic fatigue are part of Post Sepsis Syndrome. So dont feel that you have to push yourself – please take some time to recover. I was (am) a writer and the brain fog I suffered after sepsis was my most difficult to deal with symptom (apart from the chronic fatigue, which was second). I had to spend about 6 months re-training my brain to be able to write again – i would forget what I was typing the end of sentences and I had to keep a notebook to remind me what I was writing about. But it got better, its still not 100% but I built it up again – so there is light at the end of the tunnel. Please join our support group for more help: https://www.facebook.com/groups/SepsisVitalityRecoverySupportGroup/
I am 63 years old. Last year I ran into the brick wall of sepsis with no warning on a Sunday afternoon the end of April. One minute I was fine, the next I was shaking with something like epilepsy, and freezing cold so my teeth chattered. I was a fool and waited til Monday to see my pcp. By that time it had found my hip replacement from 4 months earlier. They did emergency surgery on my hip and replaced the ball. I had intravenous antibiotic 7 days a week for 4 months.
At the end of the 4 months I was told I would be on doxycycline the rest of my life to keep it from returning.
I did pretty well for the next months. Until November, when it returned in spite of the doxycycline.
I recognized the symptoms immediately. Once again, no warning. Once again the shaking and freezing. I called 911 immediately. My temp was 101 when they picked me up. 10 miles later, at the ER, it was 104. They attacked it vigorously and brought it down fast. This time I was told my best chance of survival would be to take something I am allergic to: penicillin. They took me through a process of tricking my body into accepting it. I have been on it 6 months now, and they want me on it for at least a year. Meanwhile, my regular eye exam found 2 hemorrhages in my eye. I have no idea if that is connected or not.
I have found that I am growing weaker and weaker. All I want to do is sleep. I have no heart trouble and no diabetes. The dr started me on physical therapy, but doing half the exercises leaves me soaked with sweat and exhausted.
I have no idea if this is because of having sepsis in the blood twice last year, or being on antibiotics for 13 months without a break. All I know is… I feel like if it came back a 3rd time I have no more strength to fight.
Is this anything like what others are experiencing? I should mention also that I have rapidly developing arthritis in just about every joint in my body.
I live alone and no nobody who understands what is going on with my body.
Karen, yes yes yes! what you are going through is very similar to what many of us suffer, these are all symptoms of Post Sepsis Syndrome. And I’m not sure physical exercise is the answer either. Whilst I agree we should all try to do something to keep our mobility up to be honest for the first year, just getting out of bed was enough exercise for me. I am only considering an exercise regime now and I’m 1.5 years down the line – and I’ll e starting that 5 mins at a time. Chronic fatigue, joint issues, mobility issues, breathlessness, brain fog – are all common symptoms. If you havent already, join our support group and stay in touch. https://www.facebook.com/groups/SepsisVitalityRecoverySupportGroup/
To discover more than 12 years after surviving severe post-operative sepsis that all the physical and mental anguish I’ve experienced is a thing, is numbing… validating but absolutely numbing! I’ve got so much to catch up on. It’s not likely I’m eligible for supports anymore since I’ve had to work through all this by myself and I’ve brought myself to the point where I’m actually able to consider another much needed operation but rest assured I’m not going to let this one go. Post-Septic Syndrome (PSS) in and of itself has me question everything that I’ve experienced since Nov 19, 2005. Thank you, thank you, thank you! Where do I begin now? I don’t know.
Kathleen – wow 12 years! you are indeed a veteran sepsis survivor! I think at least in the last few years the term ‘PSS’ has ‘started’ to be acknowledged as a ‘thing’. But that was one of the frustrations I found when I got out of hospital, I kept being told that I was young and would ‘bounce back’…but I didnt and I wanted to know why. I was fed up that the doctors I talked to just didnt know what was going on – most of them didnt even know that the myriad of symptoms after sepsis was a ‘thing’. Thats what spurred my on to start writing about it. We are the research!! I’m sure looking back now you can probably see lots of ‘things’ that you went through that you can now tell yourself were Post Sepsis Syndrome. I’d love to hear more about that!!
my god (just a saying btw I’m an athestiest – I believe in science!) isn’t it bittersweet to know that some people are going through the backlash of these horribles we survived through and lived to tell the tale…only to find that coming through and beating sepsis/septic shock (or as I like to call it, a dance off with the devil that I won ‘coz he had no rhythm…/reason) sadly comes as fallout because he was bitter and in it for the long haul. Taking chunks out of every part of your being. Biting holes into every system in your body, be it lungs, brain, nervous, joints,heart, kidneys, immune systems(what immune system now btw??!!), right from my eyes, ears, down to my feet, it’s shocking to think this horrid rancid thing that our bodies fought against to stave off and won through good luck, good fortune or good medical intervention at the right time and place…we were strong enough to overcome when it plagued us and threatened our life….phew!.. but then he [the devil] tries to have the last laugh over a longer timescale and hinders [us] to derails us with plethoras of mad illnesses, shooting the abolutely insurmountable ‘fatigue canon’ at anytime (when you do don’t know whether you’ve been out for 5second, 5minutes, 5hours etc) plus all the other weird and wonderful, bizarrely unconnectable and incomprehensible obstacles that you face you afterwards. only symptoms my own research did I join all the dots. I used to be an unstoppable force, a bit of a firecracker. Not much like, but enough to fuel a happy family, work, yadda yadda yadda… These days (after 14 months and counting) I’ve lost my some of my mobility, my utter capability, my rationale, my job ( of 25 years), my functionality, my sons and family and family life, my friends, my relationship etc. etc. They’ve lost patience with me, who can blame them??!! Even I’ve lost patience with me now. I’m bored and fed up with the daily throws of whatever comes my way that I just cant seem to fend off these days? Their frustration is my frustration. Beacause they know me. I know me. What no one seems to be able to understand answer is why? What is all this. When’s it going to go? They’ve got their hearts in the right places. They want to see me and be me as I was. There’s appears to be no visible or obvious answers to it. I wish there was. For them and me both.How long is this piece of entangled string??!! Meantime I’ve got to keep them off my back with their “pull yourself together” and “this isn’t good enough” mentality (which by the way I always sarcastically say that their EUREKA to end all problems I will pas on such privileged knowledge forward to be shared with every clinician, doctor, nurse consultants, specialists as “the answer” to all….) just think, all this time, there’s no need for medical science, research,advances, breakthroughs…all we needed to do was just “pull ourselves together” this whole time and everything would be ok…who’d have though eh? Tsk. Huh! Mmmm.
Like most things, as times drag on, it does become more and more of a struggle to deal with the POST business of sepsis than sepsis ever was. That little bit of me that IT tried to take (yes I know, it was all of me) but I walked away from it intact was an unfortunate disillusion. I’ve lost part of me. I’ve lost loads of the parts of me. But I’m still trying to hang on to what I’ve got(just about) and then who knows? Maybe add to it in the future!
Keep the faith. You just never know xxx
Deb, I totally get where you are coming from. Sometimes it seems like the ‘aftermath’ of sepsis is far worse, or certainly longer lasting, than the sepsis itself. ‘The gift that keeps on giving’ – is a common phrase I am hearing from many sepsis survivors. And yes the fact that it affects every part of you inside and out is pretty scary too and the fact that ‘others’ dont always see how it affects us! xo
Deb I’m 2 yrs post septic shock I belong to a group called simply sepsis on FB. I would love to share your comment with the group if you don’t mind.
Hi, can I say I can truly relate to your blog & it is nice to know us sufferers are not alone! I endured sepsis (with accompanying cellulitis) 3 times last year – in Feb, then Sept & last bout 3rd Dec. Basically I felt shocking all year… whilst recovering only to end up ill again only a month ago. I have had to resign from my job as a nurse as I this condition has totally changed my life. I too suffer with extreme tiredness, memory problems, breathlessness. Some days I am so lethargic I dont want to talk/ do anything. My body aches ( yes the heavyness too) even my vision is becoming worse. I feel like a very old lady but yet im only 48. I do dread what the future holds. I used to be so fit and active – life is so frustrating! Im told I have been very lucky but yet the doctors remain baffled as to why it keeps recurring. Im waiting to see an immunology specialist which i hope can shed some light on why I keep becoming so ill. Its reassuring to read the stories on here- as i feel my family & friends struggle to understand – we may “look” ok on the outside, but really we are not.
Dear Mallinda, thank you so much for your comment. I’m so sorry you have had such a hard time. Recovering from sepsis once is bad enough so I can only imagine how truly terrible you feel. I’m in my 40’s as well so I totally get the feeling of ‘being an old woman’ – lol! My body is a mess too – all my joints and muscles still ache, my mobility is crap and my memory is still terrible. And on top of that my hair turned white down both sides!!! I’m about 1.5 years down the recovery path and its only now I can even consider the possibility of trying to do some exercise again – and thats going to have to be staged, like starting at 5 mins and building it up. I still ‘hit the wall’ many times! And yes this is a totally ‘hidden’ illness – ‘but you look well’, is a sentence I hear a lot!!!
Oh my goodness it’s like reading about myself. It’s exactly how I feel! I have been out of hospital two weeks post sepsis and recurrent breast abscesses and operations. Each day I am increasingly weaker and feel like even eating is too much effort. Just laying in bed totally exhausted and legs aching and wobbly and heart beating loud.
Sarah ! Thank you, thank you ! I thought it was in my head. I had neutropenic sepsis 5 times with chemotherapy and then developed sepsis secondary to cellulitis twice. Both cellulitis episodes required ICU admission. My last admission was August 2016. Since then the fatigue is flattening, the muscle pain horrific and I have cyclical high temperatures, which results in rigors, ( as you put it teeth chattering and shaking) this causes the muscle pain to increase and is always followed by swelling of my finger & toe joints. I thought I was going mad until I discovered your blog and PSS.
Can you believe that I am a health care professional ? I am feeling mad at myself for not recognising this in myself. I have been supportive of many of my patients with PSS but couldn’t see the signs in myself until I looked at what you write.
It is time to be kinder to myself ! Again Thank you !
Dear Rachel, thank you so much for your comments…and you are not alone in thinking that you ‘should have’ recognised your symptoms. There just isnt enough written about post sepsis syndrome because really our symptoms are only coming to light now. This was one of the reasons why I started this blog – I was so fed up going to doctors who didn’t have a clue what I was experiencing and trying to find ‘stuff’ online to describe what I was going through – and there just wasnt anything. I learnt more about PSS from the facebook support groups I was in – thats when I realised that sepsis recovery is HUGE!!! How are you feeling now?
Sarah,
I just found your article and I can not believe your title, Hitting the Wall. That is how I have described it except I compared it to running into a wall. Before sepsis, just your average 60 yr old. After, shockingly so exhausted that you feel like a different person. My doctors do not believe me. I have been this way for 5 years and I must have described it to them just this way a million times. I believe you because I know. I think I will copy your email and take it with me next time I am able to face trying again.
Dear Joan, thank you so much for your lovely comment. It makes writing this blog soooooo worth while! I really only started writing again as a way to help my brain function and memory recover.
But recently more and more people, like you, have been telling me how they can relate to what I am saying!
So many of us suffer Chronic Fatigue and I think unless someone has ‘actually’ experienced it themselves all they will here is ‘I’m tired’, lol! So please do print out my post and let me know what your dr says!!
Love Sarah xo