SepsisΒ 

It’s been a strange and eventful few weeks. 

It started with a new niggle that was annoying more than anything, but turned out to be extremely serious.

It started as a slight pain in my left rib, under it and I thought ok, I must’ve pulled it or hurt my side without realising so I put deep heat on it and took paracetomal more often. 

It niggled for about four days, and then suddenly it became worse, and had started spasming. I had never had a spasm pain there before but, when you become chronically ill you tend to get used to spasms or aches and pains and don’t take much notice of them. So I continued to put deep heat on it and also a hot water bottle to try to ease it. 

For three days it became progressively worse, and had spread under my left breast, rib and back. Again I was more annoyed than anything, I silently started to curse my ‘stupid body’ and continue to rest, use deep heat, water bottle and re position my electric blanket so it was against my back in bed. 

It was making me totally bedbound, walking was near impossible and the pain was running through body bed limbs like lava. 

Two days later I could’ve move the top half of my body due to the severe cramps and the pain had spread into my chest. So, I decided to call the doctor for diazepam which I use when I seize and cramp badly. This was on the Wednesday, the locum was great and prescribed them but told me to call again if it didn’t ease. 

I was sure it would, and I’d actually sleep for more than the two hours a night I had been getting due to the pain and unable to move without cramping. 

But Friday, I was awake all night and the pain was horrendous. I waited until the surgery opened at 8.30 and called to talk to a dr about advice. What happened next was so unbelievleble and unexpected if I had been in front of said dr, I would’ve waged war in the room and there and then phoned the manager of the surgery. 

Her response to my explanation of widespread crippling pain, cramping, chest pain was that I need to learn to manage my health more.. Without relying on drugs. That it was probably the meds making me iller and there wasn’t much she could do and wouldn’t prescribe me anything because I’m on too much. 

At this point, I tried calmly to explain this is not normal for me, I have never had this before and I was worried, which rarely happens. That I wasn’t calling for drugs but any kind of advice and the previous dr had told me to do so if I got worse. 

She again spoke about drugs, and getting a tens machine and there wasn’t anything she could do. 

I put the phone down. 

One because I was disgusted with her ‘professional’ advice and two because at that point I was in too much pain to talk or function properly. 

I held on for two hours, crippled and in pure agony before phoning my parents to say briefly what was wrong and they called ambulance. 

My father rushed to my place and my son was home. The ambulance crew were lovely, they checked me gave me gas and air then asked if it was ok to take me to my Drs as the queue in a&e was four hours and I needed to be seen now. 

So I said yes of course, and I ended up being taken their in the ambulance. With my father and son.. 

Straight into see the dr I had spoken to that morning. 

To say she wasn’t impressed was an understatement, until she examined me and diagnosed pluersy. 

Now I had noticed purple mottling up my leg and she brushed it off and said it was temperature. Later that mottling would be important. 

But for then, I told her about it wasn’t drug related, I hadn’t wanted more pain meds and that I had cut my meds down if she actually checked my records and how was I meant to control my own health with the conditions I had? Or should I have treated my own pleurisy too? 

She was partly annoyed and partly embarrassed about it and my obvious illnesses and pleurisy. She ordered bloods to be taken and my father would take them to the hospital that night to get them checked urgently. Then prescribed my antibiotics and said she’d phone the bath pain clinic to speed up the re arrangement of my appointment as I was very in need of it.. 

I left relieved I now had a diagnosis and it would ease up in a few days and annoyed that I had to have an ambulance and taken to her when if she’d just listened that morning it could’ve all been avoided. 

I later found out when talking to the paramedic who was telling her I needed to be seen now, she asked if I had a tens machine and the paramedic who was already outraged with my story of that morning, had a go at her ridiculousness. 

So I went home, my father taking me in a taxi in my chair and got to bed hopeful to start feeling better soon. 

Saturday I felt really rough, but knew it would take a few days for the antibiotics to kick in. 

The pain and cramping in my side got worse and worse, I was up all night with it and after researching the symptoms of pleurisy,  wasn’t sure that was what I actually had because I didn’t have many of the symptoms and other symptoms I had that didn’t match. 

Through the night my chest started paining, a dull ache that spread until I was finding it hard to breathe. By the afternoon I became doubled up again in agony, pain I had never ever had that was so bad I couldn’t move, breathe, without tearing through my body and going dizzy. I couldn’t stop sweating , my temperature was burning through me. 

I’ve always said, I can handle pain I’ve been through non drug birth of my son and never thought any pain could or would be that bad again. 

I was very wrong. 

I got to the point I was just a ball of massive agonising pain, dizziness, barely breathing fetal position. 

I had to try 3 times to call my parents as by this point I kept falling in and out of reality. 

All I could get out to my father was, I’m really bad can you call the dr and put the phone down. 

Care direct called me back and I could hardly answer their questions. Within two minutes he said an ambulance is being dispatched and I just put the phone down and drifted off again. 

Within ten mins my room was full of 3 paramedics, my partner and my father. 

To me it seemed impossible for the symptoms to get worse but by the time they came, all I could feel was massive body shaking pain barely breathing and trying my to move because the moment I did, I knew the pain would tear through my side and have me pass out again. 

The paramedics thought I was having a heart attack, and put a valve straight into my arm and  injected morphine and something else into it. I’m not sure what. 

I vaguely remember my father saying ‘she doesn’t like taking strong  meds’ and I replied, “anything anything I don’t care”

The paramedics gave me three doses of morphine before the pain started to ease, I was hooked up to a heart monitor, asked how long is been like this, and asking about the dark red mottled skin all over my legs and arms. 

I was ‘stabilised’ and taken into the ambulance, oxygen up my nose, morphine still being put into me, and me saying “I’ll be ok now, it’s calmed down I can go back home and rest” 

That was not going to happen though and I was put into a&e where there were no beds so I was on the ambulance trolley in the corridor. 

The paramedics were brilliant, they really looked after me, kept apologising about the corridor and one female paramedic stroked  my hair saying “I was still pretty despite how ill I was”

I replied I think she needed to be on this trolley not me if she thought that.. 

I was in and out of awareness, the pain had eased but every so often swept through me and I was doubled up again. 

I was trying to ease my father and partners worries by trying to act ok and making a joke or two but I couldn’t keep it up so just tried to keep awake and control the symptoms as best I could. 

I was in the corridor for hours, I was 5pm ish when I went in and gone 2am when I left. 

The Drs and staff kept apologising As they had to examine me in the corridor just pulling this make shift screen around me. 

But I truly didn’t care, they were all brilliant and took care of me so well that I am so grateful and appreciate of the staff of the BRI hospital that I am mentioning the actual hospital for the first time ever in my blog. 

My father was a porter in a&e there for ten years so we both know a lot of the staff and this did make it a lot easier. I hate going in to hospital, and have avoided it at all costs of the last three years. 

But the care that was shown to me and the other patients in the corridor was so superb they deserve the recognition. In these days of our NHS upheavals and striking of Doctors, I fully support them and hope the conditions they work under are massively changed for the good. They deserve it. 

After an hour I was diagnosed with an infection in my lower left lung/pluersy and Sepsis. 

Sepsis? I had no idea what it was, let alone how I had it! 

Basically Sepsis is caused by your body’s response to an infection. The bodies immune system goes into overdrive, setting off a series of reactions including widespread inflammation, swelling and blood clotting. This can lead to a big decrease in blood pressure, which can mean the blood supply to vital organs like the brain, heart and kidneys is reduced. 

The infection in my lung was what triggered Sepsis. 

If it’s not treated quickly it can eventually lead to multiple organ failure and death. 

So it’s very serious and the symptoms can mimic a virus at first and go undetected until it develops, which happens very quickly and needs to be diagnosed and treated very quickly. 

Which is why my breathing dropped, I was so sick so quickly and the mottling of my skin I had noticed and the Doctor at the surgery had dismissed was extremely important. 

She should have, if not recognised the mottling at least of examined it and checked for causes instead of dismissing it so causaully. 

The doctor at the hospital said I was extremely lucky, another few hours and it could’ve  be been touch and go and me in icu. 

I am never ever dealing with that particular doctor at my surgery again, and I am yet to decide if I should put in a complaint to the manager at the surgery as suggested by hospital staff. 

And that’s the thing with having chronic conditions, we can often not get the medical treatment we need due to 1, us thinking it’s just our conditions playing up and 2, having ‘professionals’dismiss it as  such and putting every or any new symptom onto being chronically sick. 

I was so very lucky to have been diagnosed in hospital so quickly treated so well and given a massive dose of antibiotics and penicillin into my arm valve. 

I’m very lucky that I am still here to be telling you about this experience. 

It’s been three weeks since that hospital dash and I am still pretty sick. My other conditions decided to join in the party and on top of the sepsis and lung infection, have absolutely floored me. 

I can’t get up and go to the bathroom without it causing total exhaustion, pain, dizziness and muscle spasms. 

My body is in constant crashing mode and it could take me many many weeks to get to my usual level of wellness. Which isn’t particularly well anyway, but boy do I wish I was even that well again at the moment. Any improvement at the moment would be gratefully accepted and clung to. 
The first weeks antibiotics and penicillin didn’t clear the infections nor the second weeks I had from my doctor as it hasn’t cleared in that week. 

I had a dr visit me this week as I am still unwell and having symptoms. She thought I might have a clot on my lug so took bloods and had them sent to the hospital straight away. 

The dr called me in the evening to check on me and hand me over at 7pm to the on call dr who would phone me as soon as my results came through. It was an anxious waiting time for myself family and partner as I would’ve been taken straight to hospital. 

At 8pm the results came through and I didn’t have a clot, thank goodness! 

I had to wait until the next afternoon for the rest of the results, they showed I still had slight infections but the dr has suggested that we see if it will clear up itself before given more penicillin and antibiotics as they could actually block the infections if I’m on them for too long. 

It will take me weeks or months to get over this fully, due to my other conditions, and I need to take extra care, be cared for, do nothing that will put extra strain on my body total rest and if I feel worse or the symptoms escalate call 111 straight away. 

I will eventually be clear of the infections but I urge you to please check for Sepsis if you are showing any symptoms of it. 

Not just us with chronic illnesses but anyone who is showing symptoms of 

High temperature 

Chills and sweating 

Fast heartbeat 

Fast breathing

Feeling dizzy or faint 

Confusion or disorientation

Nausea and/or vomiting 

Diarriah 

Cold, clammy and pale or mottled skin. 

I had all of these symptoms, yet it was still missed at first. 

And I think without the massive pain that my lung infection/pluerisy was giving me, brought on more so by the sepsis, I could’ve continued to blame it on a virus or my conditions. 

So please keep in mind the Sepsis symptoms if you’re feeling unwell and anything unusual is happening aside from any other ailments you may have. Please get yourself checked out and mention Sepsis to a health professional. 

You’re not wasting their time, your time or risking waiting to see how you feel the next day incase it’s nothing. 

It’s better to be safe than sorry and be here to tell the tale of your experience, than to be unable to tell anything ever again. 

I am extremely lucky and grateful for my family and partners support and care, and friends, who though few in number, have been here for me every step of this experience. 

I am truly blessed to have such love and support in my life. 

As bad as it was and is for me right now, I am and will also be forever grateful that I am here to be able to tell you guys my story, in the hope it could help save some one else from the same experience and what warning signs to look out for. 

Take care of yourself and others

πŸ™‚ 

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Nearly Christmas!!

Happy Christmas Eve! πŸ™‚

Regular readers will know I love love love christmas! The fact it is Christmas Eve marks my behaviour incredibly festive and happy!

I am going to my parents for lunch then I’ll be home in the evening. A good friend of mine is taking me and picking me up, which I’m incredibly grateful for.
This is one of three friends I have left, who didn’t disappear when I become very unwell.
Although it upsets me that I’m unwell he goes out of his way if I need anything or to chat. I really appreciate it and although I’ve only three friends left, I know they’re true friends which means more to me than having twenty false friends.

My sons Birthday went really well, I got up really early to give him his gifts before he went to work. He expected to work until late but he had finished by 10am so he got to spend the day split between my parents, his girlfriend and me. We had a lil party tea then take away in the evening. I’m really pleased I got to see him all day on his birthday.
He turned 20 years old, which to both of us seems incredible. Him because he feels old, and me because I have no idea how the years have flown and I now have a 20 year old son!
I enjoyed every day of those years and everyone knows how proud I am of him, and how much I love him.
Being a single teenage mum was the best decision I ever made, and I cherish those years and the ones yet to come with my son.

Health wise, I’m much the same.
But I have finally recieved my neurologist appointment for 6th January!
I’m so pleased about this!
Hopefully I can finally get some answers about what is going on with my brain!
I’m still have ‘fits’ several times a day, loss of vision, memory problems and serious issues with forgetting what objects are, used for, words , mixing sentences up and inability to write properly.

I haven’t been able to speak to my doctor as she was away and then I can’t talk to her for another three weeks as she’s fully booked up.
I need to talk to her about trying a new painkiller that was suggested to me, thank you Fern :), and blood tests to check my white blood cells, muscle mass swelling and any tests to rule I’ve not developed anything else.

Four doctors are now saying they think I’ve been mis-diagnosed and I have MS, due to the severity and type of symptoms I’m developing on top of my usual ones.

I now constantly have the ‘hugging’ feeling in my chest which leaves me constantly breathless and is causing problems with my breathing and all day palpitations. I have also started falling over or bumping into things. My balance which was never great has escalated to feeling dizzy and unable to keep my balance at all.

Whatever the outcome I’m prepared for it. If it is MS then I will cope with it as best I can.
The symptoms are so close to ME that it won’t take much more alteration in my life than it already has.
Hopefully the neurologist will help to clear up this issue too.

For now, I’m happy and excited for Christmas!
Spending time with my family, my partner is going to be brilliant.
It’s not the presents, although it’s nice to recieve gifts πŸ™‚ for me it’s about spending time with my loved ones. Something that I can’t do very often now, and I appreciate the times I can more than ever.

I wish all my readers a very Happy Christmas and hope you can enjoy it as much as possible! πŸ™‚

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Help comes from the most unexpected people

I have had trouble writing the last few days. Not because of frozen fingers, I am used to that now. But when I type I am increasingly starting to type words out of sequence and this is very odd. I am either writing the word backwards or in a jumbled mess with the letters all in the wrong order. I have spent more time correcting words than writing anything the last few days and I am a little puzzled by it. I am guessing it is a neuro thing, my head has been fizzing none stop the last week and crackling more and more even without turning my head. It feels as though I have hundreds of fireworks fizzing in there, you know the moment before they explode that fizzing crackling sound they make? That is what is constantly filling the base of my neck and head. I don’t have any doctors appointments lined up and to be honest what can they do, I am already on the highest Gabapentin limit of three tabs three times daily. I am still phoning to check any cancellations coming up so I can see a Neurologist earlier than June but no luck yet. When you have chronic conditions there is only so much a doctor can do no matter how good they are. My doctor is brilliant but admits that she can only do so much to try to help lessen the conditions impacts on me because they aren’t curable. We get put into specialist hands who also then can only help ease symptoms and once they have done all they can then you are left on your own to deal with things. I could phone my doctor and explain my new symptoms but I know nothing will come of it, it will be noted down and that’s it, I am left to deal/cope with it the best I can. I prefer not to be constantly in contact with doctors etc but I do sometimes think I just want something to stop it all, the symptoms, the deterioration of my body the constant pain and barrage of things that happen daily to my body which I cannot control. But until they find a cure I know I can only do what I feel best helps me and my symptoms.

I have always been a very private person, never one to talk about myself or my life. This blog is the only place I do so and I do find it helps. But there are many people who know me that didn’t know I was unwell, apparently they just thought I was busy or being quiet and missing me when I went out. This now isn’t the case. A good friend of mine kept being asked where I was by people in our local pub and around the area. As I said before in a blog, I have lived in my area for 16 years and am a familiar face. Well, he kept quiet and didn’t tell them as he knows how private I am and was hoping I would get better which unfortunetly hasn’t happened. Anyway, when I was out in the wheelchair last month going to my opticians appointment I saw many people I know and the shocked looks on their faces. So it was out that I am unwell, and the lovely thing is people have been great and my friend has convayed to me their best wishes and to get me to the pub and get me drinks in til I explode from coca cola. Also there are many offers of help and support if I need it. I was and am very touched by this and yes I live in a rough neighbourhood but people come together and help each other out when times get rough. A very old fashion but lovely way of doing things.

I didn’t hide my illnesses because I was ashamed or didn’t want to be seen, I was trying to cope with them and how they were turning my body and life around 360. I shut myself away yes, but that is how I tend to deal with things until I myself come to terms with something. And well, I couldn’t go out anyway so shutting myself away was something that also happened because I pyschically couldn’t leave the flat. I have never had loads of friends, but only a handful that I trust and have stood by me through this last year. But I know a lot of people to say hello to, or chat to in the local shopping area, pub, corner shop, lifts etc and know a lot of people as their children went to school with my son. A bunch of us used to chat at the school gates and help each other out if one of us couldn’t pick up their child from school because of work, appointments etc.. one of us always stepped in and made tea etc and looked after their child until they could be picked up. So my dissaperence from our area was noted, which I didn’t think about at all while I was in my bubble of illness. It is good to know that if I do get out there will be people who won’t stare, make comments etc as they now know my situation and won’t feel like an alien object and can be my usual self, just now residing in a wheelchair.

I have found that the people who I thought would stand by me haven’t and the ones I never thought would stand me have. Another lesson that having chronic illnesses has taught me, expect the unexpected because that is exactly what you will get.

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