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Being Humpty Dumpty – 6 Months Post Sepsis

by | May 29, 2017 | All Sarah's Journey, Pneumonia, Post Sepsis Syndrome, PSS Symptoms, Sepsis, Sepsis Soapbox Stories | 4 comments

Being Humpty Dumpty – 6 Months Post Sepsis

On 29th May 2017 I’m celebrating Being Humpty Dumpty – 6 Months Post Sepsis and the day when I literally escaped from hospital, not only with  my life, but just as an outbreak of norovirus had broken out!!!

I was pretty apprehensive about leaving and being left on my own without medical care but at the same time it was sooooooo lovely to get back into your own bed….oh how I wish I knew then ALL the things I have learnt about Sepsis these past few months!

I left hospital thinking I had a few weeks of recovery ahead and was told that I might feel ‘a bit tired’. I was told that I ‘was young’ and would recover, getting Sepsis was an extreme case and that it would be highly unlikely I would get it again. NONE of this advice is actually true. Recovery from pneumonia is different to recovery from sepsis.

Neither did I hear mention or was even told anything about Post Sepsis Syndrome. The reality is it can take years of recovery to build yourself back up and live some form of normal life. However the reason for this lack of advice is simple. Many people DIE from Sepsis and there is hardly any form of medical research or GP medical protocols in place to help with #SepsisRecovery!

My Humpty Dumpty Parts

I’ve been telling people that I feel a bit like Humpty Dumpty – putting myself together again. Sepsis affected EVERY SINGLE CELL of my body and there is not one piece of me that I haven’t had to rebuild, literally, no exaggeration! I am technically a new person, rebuilt from the inside out.

Here’s a ‘quick’ list (lol) of every part of my body affected by Sepsis, starting from the top down. Its a good reminder of what I am dealing with but its also a 6 month marker for me to look back on!

  • Bloods: It took months for my bloods to stabilise. It took a number of months for my CRP level to lower into the ‘normal’ range – considering it hit 460 at its highest it now hovers around 2. At 5 months my white blood count finally came back into ‘normal’ range but my liver function is still out.
  • Brain: Oh man, talk about having ‘baby’ brain’. The brain fog post sepsis is 10 times worse than when I had a baby. In the early days I literally couldn’t remember anything, I couldn’t concentrate to read a book or watch tv. I forget words sometimes and have found myself stuttering a lot…and thats a big deal since I write and talk for a living!!!
  • Hair: I had heard that some people can loose up to 75% of their post sepsis and at about the 3 month mark. I think this freaked me out the most!!!! I did all sorts of research on this since I have a huge head of really long curly hair. In the end I moulted really badly and because I have so much hair, you don’t really notice. However, below the seat I sit at at my desk is constantly surrounded by a mat of my hair, lol, which clogs the vacuum up and drives my hubby nuts (cause I don’t do the hoovering). What has been scary is that my hair has started to turn white down both sides and the new hair coming in on top is white and frizzy! Today my hair is so dry that it feels like straw, in fact for a while I had to stop brushing it and could only wash it twice a week. I’ve been putting off going to get it cut but I think I might be ready for a wee trim and get rid of all the spilt ends!
  • Ears: I already had tinnitus but the high pitch stepped up a level in one ear.
  • Eyes: I had to get new stronger glasses, I now have a large floater on my right eye, my eyes are often dry. I’ve noticed a big difference in my sight whilst working close up – which is part of my job – and I get headaches if I over strain.
  • Mouth: I had a terrible taste in my mouth for months after getting out of hospital and in the early days my mouth was exceedingly dry, like ALL the time. I still would get a dry mouth and there are times when it feels like I am choking or my throat is closing over.
  • Teeth: My teeth often ache. I dread having to go to the dentist!
  • Skin: My skin goes through phases of bring extremely dry all over, then outbreaks of spots on face and neck. My skin is now highly sensitised, I can’t bear the feeling of fabrics like jeans against my skin so I’m down to soft leggings or tights. However as I can’t stand anything really restrictive against my skin I’ve had to start cutting the tops off the leggings and tights, lol!
  • Jaw: I have really intense jaw pain since having sepsis and I clench my teeth really tight.
  • Back: My back aches constantly, all day every day. I can feel the exact spot where the pneumonia was in my right lung at the back. If I get tired or talk for too long then this aches even more. I had terrible posture before and I had rounded shoulders anyway but this aches so much it sometimes feels like its burning.
  • Lungs: Obviously with the pneumonia you would expect my lungs to be impaired in some way. My breathing in the early months was really laboured and I worked with a physio to help increase my lung capacity. I still shallow breathe and I get out of breath really easily.
  • Heart: In the early days my heart rate seemed to be totally erratic so I bought myself a fitbit watch to track it. For quite a few months my resting heart rate was high – in the 80’s up to 110’s – and this went up over 120 when I got up to do something. Over time this has gone down to be in the high 70s but it still spikes quite high when I’m walking around. I actually find my heart rate plummets quite a bit – like it stops a beat and forces me to take a really deep breath. Not like a panic attack where your heart beats faster. This is particularly annoying at night.
  • Hypnic jerks: I think for the first 4 weeks of being ill I suffered from these constantly. The feeling of your heart stopping and then a moment of panic. All day and all night. They are subsiding now but I go through periods when these are really bad, especially whilst trying to get to sleep.
  • Joints: my hips, elbows, wrists and knees ache regularly. In work I often wear a wrist brace when I’m working to help strengthen them. I’m looking into a back and hip brace next.
  • Hip: I had previously hurt my hip about 3 months before I got sepsis – this was due to dancing too much, a few too many glasses of wine and generally getting up to mischief with my hubby Ian at a music festival we were at, lol – how ‘hip’ am I!! Most of my joints especially my hips ached in hospital but the pain in this one came back with a vengeance since getting ill. Recently I can even see physically that its now a different shape to the other one!
  • Feet: I get pins and needles in my feet. The left one is the worst but this is the same side as my sore hip.
  • Palms & Soles: In the early days I sweated so much that you could even see the water running off my palms and soles. Today if I get scared, over excited or really hot the same things happens.
  • Sweating: Throughout my life there have been times when I have had what I call ‘atomic armpit syndrome’ where I could sweat through a top in seconds and so for years I have worn vests with layers on top. Thats back with a vengeance. Even talking makes me break out in a sweat, hot flushes and sometimes feeling clammy. Even my hands and feet suffer!
  • Body: this month I’ve noticed that I’ve collapsed down one side and am sitting over to the right. My posture has always been crap but I actually have a line forming on my torso from this. I thought it was because of the pain in my right lung but actually as my hip is out I think its throwing me over to one side.
  • Muscles: my muscles ache and in the early days they twitched really badly. This has settled down but it goes through phases.
  • Tremors: I often have tremors and I notice this the most when I am trying to work as my hands shake really badly.
  • Sleeping: Yeh right? I spent the first 2 months having nightmares every night. Every night I dreamt about dying – 100 different ways to die, like a disaster movie on repeat inside my head. I’ve always been a crap sleeper, getting to sleep is the hardest.
  • Chronic Fatigue: I think this is the hardest of the symptoms and I know one that all sepsis survivors seem to share. Extreme fatigue. I’m not just talking about feeling tired here. I’m talking about all of a sudden feeling like you have been filled with lead or been hit by a bus. I call it ‘hitting the wall’. Its highly frustrating and really the only thing for it is to go to bed!
  • Living around energy cycles: This I have had to ‘give in to’. I found that I get a few hours good energy per day. At first it was hard to accept that I just couldn’t ‘do’ anything. Now I try to work around it. I’m up early with the kids anyway. If I have something to do then I get up and do it and try to be back in the house in the afternoon. My worst time is from about 2-7pm. I have to rest most days in the afternoon and often just get into bed!
  • My IBS: as well as ALL of the above, I also am a long-term sufferer of IBS (Irritable Bowel Syndrome) and I work hard every day to make sure I am eating right so that I can maintain good gut health. Thats equally as challenging as PSS. You can read about my struggles with IBS here.
But You Look Well

…But you look well!!! Lol, I hear this ALL the time! What does chronic illness ‘look’ like. Do you have to look like you are at death’s door – I already looked like this when I was actually at deaths door!

Most of the times when people meet me I am in my 3-4 hours good energy window. Generally they’ve met me out and about after I have gotten up, dressed and put my make-up on. I can normally last till late afternoon, after that I generally go home and collapse for a while. In the evening I fall asleep ALL the time when we’re watching a movie so we now have to pick things that are under 2 hours long. I can count the number of times in 6 months on my hands that I’ve gone out in the evening.

This is ‘normal’ life for me…and for many other Sepsis survivors. I am not bitter about it in any way. I am just recording the facts. As I sit here writing this my jaw and my back is aching (amongst other things) and my face has turned red.

I am so passionate about sharing my experiences in the hope that my story can help another cope!

 #humptydumpty #postsepsissyndromesymptoms #sepsisvitality #sepsisrecovery #lifeaftersepsis