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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Injection

So my patch idea helped a lil but the pain and sight is still terrible.

I resemble a pirate so much, what with my crippled leg, shoulder walk, patch and scowl.. All I need are candles in my hair and I would be Edward Teach, Black Beard the pirate, and he came from Bristol! He was born five minutes away from me.
Arrrr I be like sailing the seven cups that need washin up, the sea will ave to wait!
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In other non pirate related news I arranged my vitamin D injection and it’s Monday at 2pm. And the best thing is the injection goes in my arm not my bum as people kept saying! Oh yeah, no stifling inappropriate jokes for me now! ;D

I am trying anything that could help me, even if it’s just a lil bit. The injection makes the vitamin D go straight into my system and I reckon it will help. I’m to have one each month until my levels go to the ‘normal’ 75+ instead of under 10. If it helps I am happy to continue it, I’m really hoping it does. Fingers crossed and gypsy luck! πŸ™‚

It is beyond hot here at the moment, with my pain causing me to have a constant temperature and my having to lay/sit on an electric blanket most of the day is turning me into a human sauna! I would charge people to have a sauna but they’d have to sit on my lap to get any benefit and I’m not keen on that idea. I’d be covered in their sweat too, yuck! I’d rather be poor!
πŸ™‚

My father is dropping off some of my billion of pills today, so it’ll be great to see him and have a catch up.
I’m very similar to him and we are very close. Even more so since my illnesses. He’s always there for me, for anything and that’s rare but runs through my family. I am incredibly lucky to have such support and help from my family, we are very close knit. I feel for people who don’t have this and always hope they have someone, be it a family member, friend, partner. It’s important to have someone, chronic conditions are so isolating, so emotionally difficult that being alone coping with them must be a nightmare.

I may be severely chronically unwell but I have support, laughter, help and people to talk to if I need it. As far as I’m concerned I’m extremely lucky, and I am grateful for all I have. I have far more in my life than I don’t and no matter how bad things get I hold onto that and things don’t seem that bad after all πŸ™‚

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The pain of Fibromyalgia

Later blog today, I did spend two hours writing a post this morning then when I tried to post it my laptop crashed… Losing all my work and not amusing me at all! I spent most of the night awake with painsomnia, I managed to doze for a couple of hours but woke feeling awful and feeling really sick. I still got up though to take my meds and hoped the sickness would pass, which it didn’t but just got worse until I was sick several times. I find that after suffering with high pain for days I will be sick, I think it’s my body’s natural reaction to it. Still I continued to write my post for today’s blog, and then my laptop crashed along with my temper and energy. I was still really tired too so I decided to go to bed and try go sleep. Which I did until 6ish and I don’t feel so bad now, touchwood!
I was thinking about pain in the night, how much someone can go through, put up with before you become hospitalized. I myself have been in absolute agony on many occasions, my body throbbing, vein pain, my limbs swelling, limbs freezing and seizing and I should have gone into hospital but I refused to. No matter how bad I was I would still rather be in pain in my own home, own bed with the people I love in the same place. This isn’t stubborness but what I want, I couldn’t think of a worse place to be than in bed in a hospital ward, with the hustle and bustle, bright lights, noises, no one I know around me and everything so clinically removed from me. To be held for 24 hours then being sent home as they can’t do anything for me and then just continue to go through it at home anyway.
With a chronic like fibro the pain is unlike anything I have experienced before. And I have suffered pain, meningitis at 12, labour, broken arm, split head, broken ribs, laser cell treatment but not one of those is a patch on the pain of fibro. I experience pain in every part of my body, from my toe nails to the hair on my head. It’s pain running through my veins, if youve ever had an iv drip and they wash the vein it is similar to that. But instead of cool water it is heat, massive heat which quickly turns into massive pain running through your entire body. It feels as though your veins are growing larger, stretching beyond any size capable before they burst through your skin. But they don’t, they can swell your veins but that feeling of swelling inside stays. My skin hurts, I can’t be touched as it physically hurts me. Then my body aches, flu aches turned up 100% and turns red in parts. My feet swell, my hands swell and the bottom of my legs swell. Then comes my limbs freezing or locking or more often than not both together. All of these things come together, heat, pain, swelling, freezing limbs, locked limbs and it shakes the very core of my body making me pour in sweat and all I can do is lay as comfortably as possible, take my meds and wait for them to take the edge off. Which is literally just the edge, and then ofcourse you have to try and deal with the affects, the locked/seizing limbs.
Quite frankly it is agony, it is beyond any level of pain a body can cope with hence the limbs contracting and mentally it can be destroying. You are stuck there in a body that is attacking you, you can hardly move, breathe, talk, function. I find going to ‘happy places’ helps me cope with it and not just scream with the agony of it. I think about happy past events, my son, my family, my partner, my future hopes and I keep those thoughts and push the bad ones to a corner I won’t look at. For if I did think bad thoughts as well as being so in pain, I don’t think I would cope with it. It’s not easy to do, it’s easier to let your head just shut down but believe me, it makes everything so much worse and harder to deal with.
Everyone with fibro experiences different pain, coping strategies, ways of emotionally dealing with it. These ways and experiences are just mine. Thankfully the pain has ebbed and it’s on a manageable level now. I am aching, throbbing, muscle and limbs taught and hurting but I can cope with this and know my meds will take the edge off. The pain of the night has ebbed away and for that I am truly thankful. Yes, it’s waiting in the background to pop up again and again, to once again disable my body and voice. But that is in the future, that’s not now and I live a day at a time and for the moment. I have learned to. It’ll be back, I know that but for now I am glad I can relax in bed, drink tea and watch a film on my laptop knowing I will sleep tonight. I am grateful for that alone. 

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