…inspite of CRPS & fibromyalgia…

So, what’s this all about? Well, as you may know by now, I have CRPS and Fibromyalgia. As you may also know, I’m training to do a series of events this year using my normal everyday wheelchair, including the London marathon. I get lots of questions around the subject of how I manage to do all of the training for this and keep on with my other stuff. Some of you may know that I’m trying to be a writer, and am now going through the 4th rewrite of my novel, following an amazing manuscript assessment from Jericho writers. I am also a part time wildlife artist, with work in a few galleries. So, spinning a few plates!

Some of my artwork 😍

So how do you keep going when illness, and pain is constantly slamming doors in your face, telling you to stop right there, and sit down? I wish I had an easy fix to tell you. I am very stubborn. I get more stressed by self perceived failure, than pain and suffering. Sounds stupid, doesn’t it? I suspect I’m not the only person who feels this way. I suspect most people are the same. The fear of failure is such a powerful force. Don’t her me wrong, I am forced on a fairly regular basis to stop. I literally have no choice sometimes. When crps flares come along, believe me, anyone with it will agree, you can’t do anything else, other than roll about in a trance like state of agonising pain. So you kind of, have to stop then. Also, when the fibromyalgia decided to rear its ugly head, and bring a barrage of lovely symptoms, which I can only describe as, exhaustion to a level of virtual catatonia, extreme flu, and migranes… all at once. When this comes, again you have to stop. I’ve found that the only way to get through is to listen to your body on a daily basis, and do what you can, when you can.

Current training for the London marathon 💪

Take today for example. Yesterday, pictured above I was out training… Went to bed last night at a respectable 9:30pm. Then was awake at 3am in pain. I had to get up, and smother myself in bean bags, take my alloted amount of Oramorph, and wait for it to go back to its usual level. So I sat on the sofa, with a decaff coffee, watching Britain’s most evil killers (very interesting viewing at 3am!!). I sat and waited and waited. Eventually at 6am I was able to get a bit of sleep, but was up at 6:30am, as my body told my my usual medication was due! (Amazing how it likes to do that!). So my plan today of wheeling a 10k, and getting on with my character revision for my novel, has gone out of the window. Spending most of the day attached to the sofa, trying my best not to waste the time, when I need to be the most active and allert.

Not looking too good at 3am… oh new hair BTW!

So the answer I have, is to listen to your body and not push it. If it’s telling you to stop, often you have no choice in the matter, so do… Don’t fight it, just take it as it is… Everything is a marathon, not a sprint, so use the off days as best you can, and try not to let them get you down. It is difficult. I struggle with them, but I’m learning all the time, the same as everyone else with these conditions.

Bring on the London Marathon…

https://blesma.enthuse.com/pf/lexi-chambers-799fb?utm_campaign=website&utm_source=EnthuseSendGrid&utm_medium=Email

So the above link is for my fundraising page. This year I will be raising as much as I possibly can for the wonderful charity, Blesma. Most of you may know that they have helped me a great deal since my amputation almost 3 years ago. They have been there through some of the toughest times, and helped with my independence, sporting activities, my change of career and been a huge advocate for me when no one else would listen. I owe them so much. So I have planned 2 years of challenges. This year begins in May with a Triathlon, and a week later my first half marathon using my wheelchair. I then plan on completing the Bideford half marathon, The Goodwood marathon and I’ve just been accepted to be part of Blesmas team to complete the London marathon. In between these I will also be completing a series of virtual events. My hope is to raise the agreed amount in order to be selected for the London marathon, which is £2000, but I really hope to raise at least £5000. I will be completing all events using my normal, everyday wheelchair.

Out wheeling. Getting some training in.

Now, unfortunately I have exhausted my usual friends for donations. Well, let’s be honest here, hardly any of my friends have actually donated at all. I think people are a bit strapped because of covid. So I am asking for people to please just share my page. If you can, donate a small amount. Even £1 is helpful. Anything is helpful. It all adds up. This charity is much smaller than the other charities for veterans like me, but they do just as much. They deserve so much, and give so much. I will keep everyone updated with my progress. I am still doing my virtual challenges along the way. I’m currently half way through my kilamanjaro. Then will come more. I even plan on slotting in a couple of virtual marathons during the year! I will let you know nearer the time when these are.

We finished our 90 sit ups a day for January challenge.

So, as you can see above, we finished our 90 sit ups a day for blesma challenge. It was actually great fun. Tricky doing proper military situps with one leg, but I managed it with the help of a belt to strap my legs together. My left hip flexor is now very strong!!

My wife will be completing the Triathlon and two half marathons with me, also for Blesma. She will be running hers. We hope that this year my body will allow me to complete these challenges. I never know what CRPS is going to do, from one day to the next, or the Fibromyalgia. They like to rear their ugly heads at the most inappropriate times. So we’re keeping all fingers and remaining toes crossed.

2022 here we come…

Yes we see 2 weeks in to 2022. So it’s a bit late to say ‘happy new year’, but I’ve said it anyway. For the past couple of weeks I have been suffering a bit. One of those things that people with crps and fibromyalgia can’t control! So it’s taken me a bit of time to writs my ode to 2021! At the moment, I’m laying on my sofa, still suffering a flare of fibromyalgia, so please bear with me if my writing is gobbledegook!

2021 in photos

So, 2021… What can I say? It was a difficult one. It began for me on new years day heartbroken, as just a few hours before I lost my sister, Linda. I had not seen her in a very long time, and because of covid, didn’t get to say goodbye either, which was very tough. Then things looked up a bit with the booking of my TMR surgery. However, the actual surgery was very difficult, and I was in hospital for a month trying to get the pain under control. But eventually, and thanks to an amazing team at East Grinstead hospital, we did, and I got home. Then almost immediately came the access in my hamstring, and the diabolical treatment at the very hospital I had worked in for almost 20 years, the Royal Devon and Exeter Hospital. I was left in a bed for 17 hours in agony. Had my pain medication stolen from my bag, by a nurse when I was in the bathroom. I ended up discharging myself after receiving no treatment at all. A few days later a huge access was found in my leg and I was suffering with sepsis. It was only thanks to my amazing gp that I’m still here at all.

So I eventually recovered from that, and sadly had to retire as an NHS registered nurse. I qualified a few months before meeting my wife. So had been a nurse for 15 years. I loved the nursing side of things, especially my time in theatres. I am a very technically minded person, so found it absolutely fascinating. I met some lovely people, and got along with the Dr’s very well. On my exit interview, with a nurse and friend, she saw how upset I was and said ‘you will always be a nurse’. A phrase I will hold deer. 💔

My early days as a theatre nurse

I was also diagnosed with Fibromyalgia later on in the year, which was not a surprise. But it is rather annoying. It gets in the way of my life in a different to crps. I end up not being able to move for days on end…and for someone like me, who never stops doing stuff, it is a cruel and unusual punishment. Bit it is just another battle that must be fought.

The good bits… I have been out wheeling lots, and managed to complete the blesma 11k, and Mt Everest (virtually). I also wrote the first and second draft of my novel. I am still editing it to try to get it to where I want it to be, and soon will be sending it off to a professional to sort it out, so that I may stand a chance of someone taking it on!

So what’s next? This year I have lots of plans. Finishing my book, and good willing, getting it published is my biggest goal (fitness aside!). Also, I’m working on my usual entry for wildlife artist of the year. I’ve got a few more paintings in a gallery now, which is brilliant.

A few of my more recent drawings using pastel pencil.

Fitness wise! Well, there’s lots. My wife and I began on the 1st of January doing the blesma 90 sit ups a day challenge. Which we have done everyday, and will continue. I have also began my virtual wheel to Mt Fuji, of which I am half way through. I’ve also entered the following: The Exmouth triathlon on 15th May, The great West run half marathon on 22nd May, The Bridgewater half marathon on 04th September, The Goodwood marathon on 25th September, and am still hoping Blesma will let me join their team to do the London marathon on the 02nd of October. Also I am hoping to complete a few marathon distance virtual races along the way. All of which will be raising money for Blesma.

January so far…

So, although January hasn’t got off to the best start, it could be worse. Plus, when you have crps and fibromyalgia, you learn to take everyday as it comes. It isn’t easy, and I’m still learning to be patient with myself. I get very frustrated when my body doesn’t behave in a way I want it too, but I will keep trying. I hope that I get to achieve all the go’s I’ve set myself this year, and will keep plugging away. I’m also hoping that the pain from the TMR surgery will lessen, so I can wear a leg for a few minutes more. I can only wear it a few minutes a day, when my leg is behaving at the moment. Which is great, but I could do better! I am very hopeful for 2022. I hope all my friends have a wonderful, healthy and happy new year.

Mount Everest, here we come…

Virtually of course! I wouldn’t get too excited! But, for a very long time, since I first discovered climbing when I was at secondary school, I’ve wanted to climb mount everest. Now, as you may guess, this is quite a feet (no pun intended) when you only have one! So unless I can wear a prosthetic long enough, this dream will remain so. Also, the wife! She will not let me go! She is terrified, that with our terrible luck in life, that I will never come back! I have to say that with our luck, it is a real concern. But we have agreed that if I ever can, then we will go back to Kathmandu one day, and do the Everest Basecamp treck. There I get to see her, the big one, up close. Just wonderful! So what does this all have to do with now? Well, I discovered the Challenge medals. Virtual distances where you can run, cycle, or in my case, wheel a certain distance, to get to a certain place. They have Mount Everest on their list. So that was it…straight away, I signed up. One week in and I’m 55% there. I set myself 3 weeks to compete the 64km, but should hopefully do it in 2.

The journey so far…

So, why these? I needed some inspiration to keep getting out there. Anyone with CRPS and fibromyalgia will tell you, that the cold weather is not your friend. It sets off both conditions. So going outside, deliberately to wheel for an hour or more is quite mentally and physically taxing. So I needed some inspiration to get me out that door. I have found it. For some reason, as soon as I have a task to complete, my brain can’t cope if I don’t do it! So there we go… or off I go! It has been rather challenging. I haven’t had one dry day as yet. It hasn’t been terrential rain, but wet on the ground and sporadic rain. But the weather would be worse at Everest, so I keep going.

I would encourage anyone to set themselves goals such as these with crps or fibromyalgia. It has been clinically proven, that exercise helps with both conditions. I certainly feel better. I find it hard to go out, but when I’ve finished, I am alot happier (mentally). The physical side can be difficult. I’ve been having alot of flares of my crps lately, which is very draining, but I try to carry on.

I missed my wife’s Christmas party due to a crps flare!
My wheeling route…

With views like the one above, on a nice autumn day, it is so wonderful. So, hopefully by Friday, I will have completed my challenge, and then it’s decision time, as to which one I do next. Most people know that I’m hoping to wheel from lands end to John O’groates at some point. Hopefully 2023, if all goes well. I will be doing this for blesma. But I could always do the distance in training as well? Huum???

What’s been happening….

Hi there. Well, what a month or so? And where to begin? My road to recovery has not been smooth. I have been suffering with daily flares of pain. Its a battle that my leg fights with itself. The nerve pain sets off the crps, and vice versa. I try not to let the pain get in the way of my everyday life, but it has had to. This isn’t to say that I haven’t been able to do some things… I take advantage of every good moment… So, the good bits. Firstly I’ve finally finished my novel. It’s a victorian thriller/romance. I have been working on this for 2 years. It is currently with some lovely friends who are reading it for me to see if there’s anything I need changing. Then the all important task of hoping an agent will like it and take me on? I have started the second one. It is part of a trilogy.

The copies ready to go out to readers. Fortunately for me, most people wanted digital versions! 🙂

I have also been busy training, as much as I can for the Blesma 11k, which is on the 14th of November. It is a virtual 11k. Next year I’ve just signed up to 2 half marathons, and a triathlon. I’m hoping also to be part of the London marathon 🙏. I will find out after Christmas weather I’m part of the blesma team. Training has been hard. I am having to squeeze it in whenever I’m able. Which isn’t as often as I’d like. But anything is better than nothing!

Getting out and about for Blesma

Next, I am happy to say that one of my biggest insecurities will hopefully be a thing of the past…In 8 months anyway! I have signed up to invisalign, which is basically like fancy braces. I have to wear a clear shield over my teeth so that they can be straitened over time. They aren’t that comfy and I’m sure I’m speaking differently (although my wife kindly says I’m not!). I have to keep them in for 23 hours a day. Only removing them to eat. It’s great if your a snacker like me, because you have to clean your teeth and the covers every time you eat anything, so snacking is no more! So there’s lots of positives, the main one will be having confidence to smile. Apparently I also have a big over items, which I never knew about. This will also be corrected. I have included a photo of them, and in said photo it shows my teeth (those of a nervous disposition, please skip the next photo). I promised at the start of this that I’d be brutally honest! So here we go…

See… wonkey doesn’t cover it!

Next, I have had a bit of another health issue. My Doctor and I both think I may have Fibromyalgia as well as the crps. Why do we think this? Well, I have most of the symptoms of Fibromyalgia, but then alot of these double with the crps. So I’m undergoing investigations into weather I do or don’t have it. I’m hoping to be proven wrong 🙏 . But if it is proved, then there’s not much I can do about it, just try to keep plodding along, and not let another thing get in the way of life (as much as I can, anyway!)

I have to mention my amazing wife, who did a 15000 ft skydive last weekend. I foolishly bought it for her for her birthday. Then spent the month in between then and the jump, terrified that something would go wrong, and I may loose her. She is my heart and soul. We have been happily married for 13 years, and together for 15. She is my world, my very best friend. Life without her would be unbearable. So having your world fling herself out of an aeroplane was terrifying. But she was desperate to do one. She did a jump when she was a teenager and loved it, and asked me for years to do another. I finally gave in. I’m happy to report that all went well. I think I nearly had a heart attack 😳, but she was a trooper. Smiled all the way through, and now of course, wants to do another one!

My amazing wife! 👏

Lastly, I have now got a leg again! Yes you read right, I have a leg! The brilliant prosthetist at Bristol mobility centre has made me a leg that I can wear. I can only put her on for a few minutes at a time, but that’s better than nothing. I can’t wear her on bad days, which are more often than not at the moment, but I’m assured by my surgeon that this may get better. So when I can I pop my ‘flo’ on. My leg is named after ‘flo jo’ the sprinter. I still have a hope that one day I may be able to walk, and even run. I will always keep trying. Never give up despite the odds. So here is my leg.

Lovely flo ❤

So, that’s it for now. My 11k will be on Sunday. Can’t wait! Lots more fun to come.

Flare ups…

If you have CRPS, this term is something which you will be all too familiar with. For those who are not so familiar, it is where your ordinary pain level escalates to the unbearable! For me, using the ordinary pain scale of 0 being no pain and 10 being the worst ever, I live at a permanent 7-8/10. When I have a flare this escalates to 10++. Now, you may wonder how you can get worse than 10, the worst ever. Well, this is simple. Just when you think you’ve reached the worse pain you’ve ever had, crps has a way of letting you know that you were wrong, and there is always more to be suffered!

So that is what a flare up is. Now the worst part of it for me is the fact that it dictates what I can and can’t do. When it’s bad, I can’t do anything. I basically roll about crying, and try my best to do my mindfulness. When it’s a semi flare, so basically a 9 or 10 on occasion. It fluctuates between the 2, this is the most annoying. I get these alot. I’m having one right now. Today I was hoping to go for a wheel, write more of my book and had a few chores to do. But instead all I’m capable of is laying on the sofa, with stumpey covered in heat packs. I feel totally useless, and hate the fact that it is dictating what I am aloud to do today! There is no way I can write my book, as it is so important that I get it right. It is set in the victorian era, and so requires alot of research, which is something that is rather difficult when you are such a high level of pain.

I hate this condition dictating my life. Because I am recovering from the TMR surgery, I am having more flares than usual. While the nerves are finding somewhere to go, and causing a ton of pain in the process, they set off the crps. I was told this before the surgery, and was told it could last for 6-12 months…Well I’m now on month 3…I’m so hoping for the 6 minimum, but with my luck, it will likely be the 12. I’m not feeling sorry for myself, just speaking of reality.

Reality!!

So what can be done in these situations? It is so easy to let them drag you into the pits of despair, and believe me, I’ve been there all to often. Every time, I wonder when it will end, and worry of them beginning. There’s nothing more annoying than having to tell a friend who wants to see you, for the 20th time, that your going to have to cancel! I have lost so many friends because of my flares. But what I realised was they were not very good friends to begin with, or they would still be around, and be understanding! Still doesn’t stop it hurting at the time! So now, I try to accept the situation. I lay on the sofa, and try as best as I can to relax, and wait for the flare to end. Then on the days when I can, I try my damndest to use them as fully as I can. I make sure I exercise, weather it be swimming, handcycling, wheeling or going to the gym. I write as much as I can, and I try to do some household stuff. I feel useless if I don’t. I love a tidy and clean house!

So basically what I’m trying to say is, don’t beet yourself up for not making appointments or meetings with friends. If they don’t understand, they are not true friends! Remember if your having a flare, you need to rest. So take the advantage to catch up on a box set or watch some movies. Try as best as you can to be kind to yourself. They are part of the condition, and although they are the worst part, it doesn’t mean they have to take over who you are. You are strong, and you know they will end.

I hope your having a good pain day 😁

Slowly does it…

Exactly as it says, slowly does it! I am finally getting back out there. I have managed three wheeling sessions, two handcycles, and three swims with gym, in 4 weeks. Not as good as I had hoped, bit also better than nothing! The post surgery TMR pain is now in full swing. At least I hope that is what I am experiencing, and there is nothing worse around the corner. All I can say is, omg… When my lovely surgeon told me to expect 6-12 months of he’ll, she wasn’t kidding. It’s like targeted crps flares. Basically like I’m being stabbed by a red hot poker. It can go on for minutes, but more often than not, it seems to be days. The worst part is that nothing helps. The boiling hot heat packs help with the crps flares, but they don’t seem to help with this new pain. So I have to wait until it goes! Pretty annoying. But, hopefully it will be over within the alloted time period? Fingers crossed for the lesser 🤞.

A successful wheel…

So, also, I’ve been privileged to take part in an article for Blesma magazine on TMR surgery. They have followed me through my surgery, and after. Should be fun to read. Not sure when it will be out, hopefully in the next one.

I must say, I will be glad when things are looking up a bit more. Although I know better times should be coming, I’m getting a little inpatient. There is so much of life I wish to experience, and so much of it depends on pain levels, and the predictability of flare ups. It is rather annoying, having to cancel things all the time. Having to cancel dates with friends, general appointments, and I’m yet to start at the track because I had a flare before my first session last week, which was so upsetting. 😢. I can’t wait to start. Maybe even compete one day? Who knows?

Come on! Let me train!!!

Well, as you may guess, I’m starting to go a little stir crazy! This infection is relentless. I’m now on another type of antibiotic, Co-amoxiclav. The Flucloxacillin ran out the other day. It was very strange. I went to bed feeling a bit better. Then by lunch time the next day, after not having any antibiotics, I was back to feeling awful again. My heartrate was over 100 again, known as Tachycardia. I felt extremely tired, to the point that I couldn’t stay awake. I felt very sick and had no appetite at all. I also felt quite shakey. I had no temperature, but have not had a significant temperature (pyrexia) throughout the whole period of my illness. There is a common misconception that you have to have a temperature to have an infection or sepsis. My consultant said he thought I was septic when I finally received IV antibiotics. There is such a thing as hot sepsis, where you have a temperature (a temperature above 37.6) and cold sepsis, where your temperature is normal or below. Normal is different for everyone, but in general the normal range is 36-37 degrees. I am normally 36-36.5 when I’m well, so I know if I’m at 37.5 I’m usually not too well. We’ll my temp was a bit up bit not into the 38 plusses, which is where worrying begins. So at first they just focused on that. Until they finally realised that my other observations, like high heartrate (over 100 bpm) and low blood pressure was telling a story. Normal blood pressure is 120/80. Low is considered 90/60 or below. High is considered to be 140/90 or above. Mine was 60/40 at one point. My heartrate was 140-160 at rest, whilst laying in a bed. So there was no doubt I had a problem.

So, observation lesson over, I was basically feeling rubbish again. I decided to try 111 first before going to A&E, hoping to speak to an on call Dr. I spent over an hour with the phone on hold, and eventually gave up. So we were off to A&E again. We’ll bloods were taken and my platelets were high, my red blood count was low, and my crp was up. All showing infection. So I started on antibiotics again! The next day I felt a little better. Then on Monday these ran out and I fortunately spoke to a great GP at my local Dr surgery who decided to try another one. So here we are. Awaiting more blood results today! But still feeling rubbish to be honest.

Me training!

So here I am. Still feeling to rubbish to train. We now have access to a new pool and gym. My wifey, who is amazing joined us up to David Lloyd whilst I was in hospital, as she knew how desperate I was to swim again, and start training for a Triathlon. So now I’m at home, my handbike now accessible, my wheelchair itching to get going, the new pool and gym waiting for me…and I’m still stuck to the sofa. Finding it difficult to eat more than a bowl of cereal and a piece of toast in a day. My muscle mass is deteriating, and I’m feeling absolutely rubbish. No energy at all. Then I’ve been sat watching the Olympics, which makes me want to train more than ever. I want to do my half marathon, but now I know I can’t. I want to do a marathon. I want to start training to do Triathlons. Hopefully one day an Iron-man. I have so many ambitions, and yet being glued to the sofa, is not one of them! It is quite depressing to be honest. I’m not too patient at waiting to do things I love! I just wish this infection would listen to me, and GO AWAY!!!

So for now, it’s fingers crossed. Try to eat, and be patient 🤣. One day I will be back out there…and that day will be amazing!!

So good to be home.

I’m home, as you may have guessed from the title. I finally made it home at 7pm on Tuesday. I think it was probably the longest discharge in history! Saw the Dr’s o Tuesday Morning at approximately 9am. They said they’d have me ready for lunch time!!! My wife made her way after work at 2pm. I ended up sending her home before she even made it to the hospital, knowing I was nowhere near discharge. I had gotten myself dressed, and my bag was packed. By 3pm I gave up, and my pyjamas were back on!! 🤣 My wife then remade her way at 5pm, as we were told that things were ready! At 7pm finally I was discharged. I waited 10 hours for a discharge letter and a few tablets! But, to be honest, I didn’t care. By the time I got through my front door, and into my pyjamas again, and was cuddling my little Lily, nothing else mattered.

Cuddling my little Lily 💙

My experience on Wynard ward was thankfully very different to the disastrous 13 hours on AMU. All of the staff were lovely. I had a fantastic student, and I wish I remembered her name, (I’ve always been useless with names!), but she was incredible for her level. She’s only a few weeks away from qualifying, and I’ve met nurses who have been qualified for years who don’t sho her professionalsm, level of caring or expertise. She will make a fantastic nurse. I do know she had a job already, and will be mentored in it by my best friend from university, which is amazing. The Nurses were all lovely. The endless cannula attempts. I think I counted 24 attempts in total! My veins completely gave up, and ran for the hills!!

I am still a little weak, and on antibiotics. Am very much looking forward to getting back to training. My lovely wife joined David Lloyd whilst I was in hospital, so I can swim again. In a pool which will not be overcrowded. It also has a handbike in the gym. I’m hoping to do my first swim on Saturday, all being well. I’m also going through classification for Triathlon for next year. There’s one in May which I’d like to do. As for my half marathon on the 5th of September! I’m going to have to see how I get on with training. I’m desperate to do it, but I know I’ve been through alot in the past 6 weeks, so have to build up slowly, and accept it if I can’t do it. I will find another to do instead! So for now, I’m trying my best to eat when I can, and stretching. The antibiotics make appetite a challenge, and make me very nautious, so the only thing I can stomach at the moment is toast, cereal and midget gems!! Not the best diet for fitness!!! But again, I’m home…. 😁😁

And I’m in again….

So, it’s been a few weeks. Finally made it home on the 19th of July from East Grinstead QVH hospital. They were incredible. Their treatment and kindness blew me away. Unfortunately on discharge, and just before I started having pain in the back of my leg where the nerve catheter was situated. We hoped it was just bruising and swelling from the sheer quantity of fluid that had gone into my leg. So after a couple of days at home, the pain got worse, and a tennis ball sized lump started to form in my hamstring (muscle in the upper back of your leg). I couldn’t sit on it, or even touch it. Systematically I also wasn’t doing too well. My heartrate was permanently over 100bpm which is known in the profession as Tachycardia, and my blood pressure was very low. These are all signs of infection. After a few days I put through an econsult with my gp. I was told they would phone between 1-6 on the Friday, but no one called. By 8pm the pain was so unbearable that we made the decision to go to A&E.

Me in A&E. Not looking too happy!

So after a bit of a wait I was trialed, and seen by a lovely Dr, who said I had to be admitted. They were very busy, and I was told that when I got to AMU, which is an emergency ward, I would be given pain relief, and they would scan my leg or do an ultrasound, and would be started on antibiotics. She reassured that they would get to the bottom of it. Well, none of this happened. I spent over 12 hours in a bed begging for pain relief, and no one would listen. Not only that, but they took my own medication from my bag, without my knowledge when I was in the bathroom. I have a chronic pain condition, and can’t go without my usual medication, and they wouldn’t even give me those. They did no tests, gave no treatment, and basically ignored me completely. I asked why, and was told they were busy. There were 5 other people in my bay and all 5 relieved treatment. Yet I was treated like I was a junkie asking for meds. They made a judgement and that was that. It wasn’t until 13 hours when I had asked repeatedly to speak to the ward manager that she showed up. She was lovely, and had no idea of what I was suffering. She immediately gave me my own medication back and I told her I wanted to go home. The crps was out of control by that point. I was briefly seen by a Dr, and despite the overwhelming symptoms pointing towards an infection, he refused antibiotics. Over the weekend I deteriorated further. I saw my gp on the Monday, who said I needed immediate treatment. But I had to go back to the same place. Well I just broke down. I couldn’t bear to be treated that way again. But she was amazing and spoke to the manager. Told her what had happened, and asked if I could be seen in the other part of the ward. So I was. There I had an ultrasound where they found a large sack filled with fluid inside my muscle. I was started on antibiotics and let home with an appointment for a scan the next day. I had my scan which showed a huge amount of swelling and a large fluid filled sack. The next day I was admitted for treatment. I ended up on the sister ward of amu and they were much nicer. I ended up being moved to Wynard ward where they’ve been wonderful. I had the lump drained by an amazing consultant in radiology. It was filled with what he called, pea soup… lovely puss. He took one look at my observations and said that I was septic. I was immediately started on IV antibiotics and oral antibiotics… and here we are. They know there is stafflococcus in my leg, but not sure as yet if its the MRSA (MRSA is a type of bacteria that’s resistant to several widely used antibiotics. This means infections with MRSA can be harder to treat than other bacterial infections) or another type. So I’m in isolation just incase, and awaiting news from microbiology, hopefully tomorrow.

Me on the ward…

They have been lovely on this ward. All the nurses and Dr’s have been fantastic. My veins are all rather rubbish now, so if my antibiotics need to continue longer, I may need a more permanent solution, like a long line or central line. Pretty scary stuff to be honest. So now I’m just waiting for news. Crossing all fingers that I can go home soon, and finally be on the road to recovery. The access and infection are a very rare complication of having a nerve catheter. So of course, being the Queen of rarities, it was bound to happen to me 🤣. Still, onwards and hopefully upwards. I’m busy watching Nurse Jackie box set, and my wonderful wifey has been to see me every day, so can’t grumble too much. The TMR surgical wound is so neat and I think it’s already helping. So, hopefully good news for tomorrow 🤞