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Lara81

Post Septic Syndrome newbie

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Hi!

 

I say newbie, but actually what I mean is that I have only just discovered that Post Sepsis Syndrome may be the cause of my symptoms, two and a half years after sepsis. I have been desperate for an answer to my chronic ailments, but only became aware of PSS yesterday as a possibility. It perhaps doesn’t account for all of my symptoms (I also have some gastro issues), but it makes a lot of sense for others! However, not one doctor that I have seen has ever suggested this. If you’d like to know my story here goes:

 

In June 2015 I had a beautiful baby girl. After a very fast labour and third degree tear I was left for 6 hours before they cleaned and sewed me up (very busy maternity ward). I had a catheter for 48 hrs, was given oral antibiotics and went home feeling pretty awful, but ok considering the traumatic birth. On the 3rd day, a midwife popped over to do my checks and all seemed fine. I felt tired but no other symptoms. That night though, my new baby had a poo (sorry), which reached up over her belly and covered her umbilical cord. It was a mess and I was freaked out, ironically concerned about infection! As we carefully cleaned the area, whilst trying to comfort baby, I began to cry, sob! All of a sudden I was shaking and crying, felt freezing cold and with a feeling that I was going to die (my partner told me later that my lips had gone blue). I insisted I needed to go to A&E despite my partner arguing that I was overreacting and it was probably a panic attack due to the poo accident (!!!). I was also drinking litres of water - I was so thirsty (thought it was due to breastfeeding).

 

By the time I got to hospital (in my pjs and dressing gown), the shakes had subsided, but I was still so thirsty I just couldn’t drink enough. I have no idea what my stats were, but was put in a side room (due to baby), blood drawn and straight on iv fluids. I felt better. The A&E dr then told me I had sepsis. My blood had extremely high infection markers and they immediately put me on iv antibiotics, although they weren’t sure where the infection was coming from (they checked breasts for mastitis, urine and checked my stitches). I had no pain at all and weirdly felt fine after being rehydrated. I was more distressed about the fact that they were telling my partner to take baby home and that they didn’t want me to breastfeed with an infection (I was told later that this was actually completely unnecessary as it would have had no impact of breastmilk).

 

So, long story short, I was admitted back into maternity ward (with my baby) with iv antibiotics for 3 days until my stats returned to normal, then I was sent home with further oral antibiotics and no further instructions. They never found out where the infection was, but I assume it was probably due to being left for so long after the birth.

 

Since getting better, I have not been better at all! To begin with it was brushed off (by myself also), as the result of sleepless nights with a new baby. I have also had anxiety and depression over the years, so when I finally went to the dr to say that something wasn’t right I was put back on antidepressants ☹️ To be fair, I was suffering from terrible anxiety, which they did help with a lot, but they didn’t address my physical symptoms: extreme fatigue, muscle weakness, joint pain, exercise intolerance, restless legs, vivid dreams. Since this, I have also developed gastro symptoms and convinced myself that I was suffering from either cfs, fibromyalgia, Addison’s Disease, coeliac disease, or thyroid problems. My dr just isn’t interested at all and “doesn’t like to label things”. All I have had back is that I have anaemia and the rest is dismissed as mum tiredness! I hate to make a fuss, so probably haven’t pushed it enough and have downplayed my symptoms and how much it has affected my life, but now I am really at my wits end as I just don’t seem to be getting any better, no matter what I do.

 

I struggle to get consistent support from family because on my good days I do loads (I do try to pace myself), so on my bad days they’re like ‘oh, not again’. It’s hard to feel disbelieved by your own family and I end up in a vicious cycle of pushing myself to get things done just so they don’t see me as lazy! It is a living nightmare.

 

Anyway, after reading some of the posts on here, I do finally feel like I have an answer to what is wrong. Thank you! I DO need to rest and I am NOT lazy or making it up (subconsciously or not). This is a real illness and I can’t believe I haven’t been allowing my body to recover. I thought as it was just ‘mild sepsis’ and my gp has never even brought it up, that it couldn’t possibly be related!

 

Hopeful that there may be recovery in the future now if I look after myself.

Lara

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Hi Lara,

 

I can totally sympatise with you (apart from child birth). from my experience. get your stress levels down and try to relax when ever you can, i know that's not easy, but you must try. I was the "housekeeper" at home while my wife worked away, but I still had a full time job. I found that the stress exacerbated the PSS. Try taking 30 mins out a day to do some mindfulness or even get on a treadmill and walk for the 30 mins.

 

I'm sure that everyone else will agree. my stomach still acts like a washing machine, but the fatigue and muscle ache has lessened and I'm nearly 2 years on. I've also found, since divorce, that my memory is my better as my stress levels aren't so high. things are still difficult, but i only have the gastro issues now (they have been looked into, but noting found). i find that buscopan and imodium help in the short term, but you really do need to relax.

 

Hope this helps.

 

Mark

 

x

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Hi Lara

I have been thinking about your post a lot tonight and to be honest I know exactly what you mean about people not understanding. My sepsis was back in late 2008 and I still have problems, the days where I can do everything and days where I can just stay in bed all day and in pain all over and all I think is when is this going to end. I work full time i'm on my own and to be honest its hard. I guess until someone actually suffers from sepsis (and you wouldn't wish it on anyone) they don't really understand, I just wish there were more meetings around so sufferers can talk together i'm from Gloucester and there is nothing local. Please get in touch if you need to talk.

Denise

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Hello Denise

 

My name is Oliver and I'm one of the support nurses from the UK Sepsis Trust.

 

I'm sorry to hear you and Lara are still suffering with some of the after effects of Sepsis.  These symptoms are extremely common and can last for sometime after.  It would be a pleasure to speak with you both and offer you some support and advice moving forward.  Our freephone number is, 0808 800 0029.  We are here Mon - Fri 9am - 4pm. 

 

The support groups we set up and help to run are also an opportunity to meet with people going through similar experiences to yourself.  Some people find this platform really therapeutic.  Denise, you mention you are in Gloucester.  We have a group in Winterbourne, South Gloucester.  Please follow this link and put in your postcode to find your nearest and next meeting:  https://sepsistrust.org/support/ 

 

We wish you all the best for the future and hope to hear from you.

 

Kind regards

 

Oliver

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Thanks for your reply and tips Mark. It sounds like you have come a long way! Stress is definitely a major factor for me too. I have worked on my mind a lot over the last year or so, with counselling, cbt, life-coaching and a self-esteem course (very lucky to have this funded by my local family centre). It has helped me keep stress levels down so much. I’m at the point now where I am so motivated psychologically, but held back physically. Ironic really as it has been the opposite for me for many years.

 

I love yoga so much and really find it helps me relax. Tbh my symptoms are so debilitating right now though I have had to put it aside. Mindfulness is fantastic too, especially for those times when you can’t sleep!

 

Lara

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Hi Denise, I’m so sorry that you have been experiencing this for such a long time. I think the most frustrating part is when you begin to feel good again and then wham, it’s back! I had a long chat with the family on the wknd, and basically told them that they need to change their perception of me (sadly), and expect me to not be able to do things, rather than expect me to get on with things and then disappoint them when I can’t. My partner and Mum seem to have really taken it on board and I have felt a bit more ‘allowed’ to rest this week. Thank goodness as I am having a horrible flare up of symptoms. The teens, not so much, but they are teens so not much I can do there, lol! Do you have any support Denise? It just seems such a heavy weight to bear alone.

 

Lara

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Hi Denise, thank you for your reply. I’m so sorry that you have been experiencing this for such a long time. I think the most frustrating part is when you begin to feel good again and then wham, it’s back! I had a long chat with the family on the wknd, and basically told them that they need to change their perception of me (sadly), and expect me to not be able to do things, rather than expect me to get on with things and then disappoint them when I can’t. My partner and Mum seem to have really taken it on board and I have felt a bit more ‘allowed’ to rest this week. Thank goodness as I am having a horrible flare up of symptoms. The teens are not helping so much, but they are teens so not much I can do there, lol!

 

I hope you can make it to a support group as Oliver has suggested, although I know it can be hard to even get to somewhere when you’re feeling awful, it might be good for the soul ????

 

Lara

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