So over a year has passed, where have I been?! Well I have been very scarily fighting for my life.
I’ll try to keep this short, but it’s a long story.
Last September, having a relatively good period of health, I’d taken my handcycle and gone on a three-hour coaching spree in the absolute pouring rain. I’ve been less wet in the bathtub!! Other than resembling a drowned rat, I was feeling absolutely fine. I warmed up, dried off etc… and went to bed.
The next morning was the beginning of the nightmare that has been the last 10 months. I woke with backache, nothing spectacular and not horrifically uncommon- I sit down all day and had spent 3 hours on my bike in the freezing cold, something was bound to hurt. The odd thing was that I couldn’t straighten up. Refusing to pay too much attention to this, I applied heat, convinced myself it was a bad muscle spasm, got medication from the GP, and arranged an emergency sports massage. As the day progressed the pain got worse, it wasn’t responding to heat, ice, pain meds, muscle relaxants etc.… I carried on though, as the day progressed I started shaking and not being able to bear my weight whilst sitting up, despite this I still coxed a crew, well it was that or they didn’t go out and I couldn’t bear that.
Things kept getting worse, I had to take the weight through my arms when sat, I still couldn’t move to an upright position, but still I denied a serious problem. The Calea nurse came and went, my carer came, and I insisted I wanted a shower (despite the shaking and severe pain thing). She insisted I sought medical attention so I messaged a medic friend of mine who replied with “You should have phoned an ambulance 6 hours ago”. Reluctantly I considered this, with her messaging every few minutes to check whether I’d phoned an ambulance.
With much reluctance, I gave up, and the carer phoned for help. I got a friend to come round as well. By this time I was just lying on the bed yelping. Still trying to convince myself it was just a muscle spasm and this was fuss over nothing.
Eventually the paramedics arrived, by which time things were getting a little hazy. I recall them walking in and thrusting Entonox at me without saying much. I think they could probably hear my yelps in the street. With plenty of Entonox on board, they managed to get some sense out of me.
I remember we did my basic obs; everything was fine bar the raging fever, which I hadn’t noticed at all. At this point, I remember saying, “Is this the time to tell you I have a central line?” Cue serious faces from them and checking I was serious. We rushed, very gently over to A&E, where I continued to consume copious amounts of Entonox.
The Doctors were fantastic. It was clear I had an infection and it was assumed I had a central line infection that had probably gone septic that was causing all the pain. They tried, but failed to follow sepsis protocol- I should have had a stat dose of IV Domestos before leaving ED, but they were too worried about me breaching to get it sorted. They also didn’t sort out my pain relief properly and left me screaming in agony all night.
I had started having huge back spasms that brought my knees to my chest. The plan was badly thought out and they decided to send me for a PICC before starting my PCA, by this point, my back was continually spasming and I was stuck, completely in the foetal position on my side, which made for PICC insertion difficult. They also failed to sort out my dignity – I was desperate for the bathroom at 5 AM, but couldn’t get on a bedpan for the aforementioned reasons. Eventually my team came and decided that I probably had a line infection and would be up and out of there in a week with some IV antibiotics, but they would do a spinal MRI just to make sure. The plan was to put an In-Out catheter in until the PCA started and I’d be able to move more easily. The ‘minor’ problem being no suitable catheters on the ward, and I think the world’s slowest walker went to the other side of the hospital to steal some from Urology. Then there was the faff that the nurses didn’t know how to use them, errmmm it’s a catheter it’s not that hard and you put Foley’s in regularly.
My bladder by this time was progressing from hill to small mountain and eventually got impatient, I won’t tell you the rest, but I was a very soggy and unhappy patient.
Eventually things were settled, I had the PICC placed so I could get some decent pain relief, I moved to my usual ward, but I was still having massive back spasms. Eventually someone added in some IV diazepam and I finally managed to start sleeping a bit better.
MRI day came, I was told off for moving too much- they’d taken away my pain relief as it was out of hours, and I hadn’t had any diazepam for hours. Eventually exhaustion hit and I fell asleep in the scanner.
Back on the ward, the next morning and hell really started to happen. The MRI showed I had a massive Paravertebral abscess from L4- base of sacrum, Discitis at L5/S1 and Osteomyelitis at the same point, as well as a few other bits and pieces. The question was what to do. They said they couldn’t biopsy because of all the nerves in the area, but the blood cultures were showing nothing. Therefore, we started chucking more antibiotics at it.
I just didn’t get better. After 2 weeks, I was still as bad clinically and my fevers hadn’t gone anywhere. More antibiotics were trialled, but after 5 weeks no change. A 6-week course of other antibiotics was embarked on. I was starting to turn a corner, the labs were looking better and my fevers were down. Then 5.5 weeks into the course fevers returned and my labs were off again. We extended for another 2 weeks, at point 7 weeks and 5 days having been fever free for nearly 2 weeks I spiked a massive fever. I told my consultant and she said it was just a one off and not to worry. Cue a whole day of fevers. I woke up the next morning and found my consultant at the end of the bed “I wasn’t expecting to see you today”, “well I wasn’t expecting you to have fevers all day” she retorted!! After a long discussion with Infectious Diseases, they decided a 12-week course was the answer.
Sometime during this experience, somebody decided that I might be having antibiotic fevers and they wanted to stop my antibiotics for 48 hours and see what happened. Part way through that experience I spiked an over 40°C which persisted for the whole day, at some point in the early hours of the morning I was woken by the Critical Care Outreach Team, one of the scariest points of the experience, they are NOT a good sign. Thankfully, I went back on to the antibiotics and the fever came down. I had a similar experience when they changed the antibiotics to one I told them never worked for me, and that didn’t go well either.
So having had 5 weeks of mix and match antibiotics I then had a 12 week course of IV Domestos (other brands of bleach are available).
Somehow, a week turned into 100 days, I don’t quite know where or how, but what I thought had been a couple of weeks had turned into several months.
Eventually my birthday loomed, yet another big birthday that was looking to be a disaster. People did their best. My Mum sent some 30 balloons, they were much larger than anyone ever expected and caused much amusement on the ward!!
They also let me use a meeting room to have a little party the weekend after my birthday. I was so grateful to everyone who came to make it a special day. I eventually crashed out and fell asleep in the party!!
Birthday joy (and the giant numbers!!):
During all of these antibiotics, I had to undergo major physio- I couldn’t sit up to begin with and we did a lot of work to get me moving again. The first day they hoisted me out of bed I didn’t even make into the chair before I had to go back to bed again.
This was one of the hardest fights of my life. I was determined I wasn’t going home needing to use a hoist. Nope not happening, no way. (I have nothing against hoists as such, but I wasn’t letting this infection change my life even further). We battled a lot; there was a lot of tears, a lot of pain, but also a lot of laughter. I was fortunate enough to have the most amazing Physio and OT team. I don’t think I could have done it without them. They told me it was all my work, but they were there cheering me along, making me believe I could do it. I honestly think the outcome would have been different if it hadn’t been for them. Towards the end of my stay the physio changed and he was not at all supportive and I think would have made my recovery a lot less effective. Thankfully, by the time he was involved I was well on my way back to recovery.
My first time in a chair for months:
My first trip outside in even longer:
Shortly after my birthday came Christmas. Hospital Santa left me a nice present, and I was allowed a few hours home with my parents. We made the best of it as we could, but I eventually hit a wall and needed to go back.
I got to play with my beautiful gerbils though, who I hadn’t seen since September, and I’d only had them about 3 weeks before I went in, but, they seemed to know who I was and were very well behaved.
I spent Boxing Day recovering in hospital and slowly opening some more presents. I learnt Santa is extra generous when you’ve been fighting for your life!! The next day I got a few more hours leave and went home again. I had to wade through masses of paperwork and try to get some sort of semblance of normality going on. There were more presents (yay!!) and then back to recovering at hospital.
Eventually I started being able to get more independence. I still couldn’t sit up straight, and was stuck in a huge wheelchair, which reclined and tilted in space, which was fantastic at the time.
During this time, I was also assessed for Continuing Healthcare to try to get me more support at home. I had to prove that my needs were mostly medical rather than social, and that they fulfilled a few other criteria. A lot of stress, a lot of paperwork and unpleasant experiences accompanied that, but eventually I was approved.
I was to be sent home with 24/7 live- in care. This was a huge shock and is still taking adjustment. It also meant I had to sort out the spare room as it was basically a junk room, and we had to make it habitable somehow. Fortunately, just before I went in some friends and I had cleared the room a bit so that the gerbils could live in there, and people could stay the night at a pinch.
There was still a lot of work to do to make it habitable though.
By now, it was February and I was finally off my antibiotics, but still under the care of the Physio and OT and still trying to sort out the care arrangements.
I was given weekend leave, which was exciting and a big step forwards (and a huge one back as well as I was to discover). I was chief delegator whilst sat on the sofa. Eventually I fell asleep, I woke up shivering. I assumed I was just not used to the normal temperature of my house rather than the Greenhouse of the hospital. I was due to go to a formal meal and then a meeting the next day, which is why I choose that weekend for leave.
I continued to shiver despite a warm bath and many layers. I headed off to my dinner regardless (Denial is fantastic!!) Eventually I stopped shivering and didn’t think much of it. The next morning I woke feeling okay, and then all of a sudden the Rigors hit again. I was vomiting and apparently looked horrific. I was adamant I was going to my meeting, and then all of a sudden it hit me and I was desperate to go back to the hospital to sleep.
On arrival, we mentioned it all to the nurses, and I had a raging 41°C fever. ‘Flu had just hit the hospital and was about to hit the ward, so it was assumed that was the problem, and we would continue with preparations for discharge on Tuesday. They took some blood cultures just in case, but my primary consultant had just gone off sick too, so it was assumed to be one and the same having spent an hour or so talking to him on the Friday.
We continued planning for discharge, being reassured again it was just ‘flu, and then a nurse asked me why I was being started on IV antibiotics. I had no idea and we thought maybe it was a clerical error; suddenly a Doctor appeared and explained that I had sepsis again. This time they’d grown a bug so they knew what to treat. This was a kick in the teeth; having already had 17 weeks of Vancomycin my body wasn’t keen on more. To add to the joy I also managed to contract MRSA and got myself moved to a side room.
I redecorated the room with all the amazing cards and letters that my friends had sent. I couldn’t believe the amount of support I’d had over the last five and a bit months.
The Wall Of Love (several layers deep in places):
Another 2 weeks of IV Domestos and I was ready to go home. It was a new world I was going into, my hopes and dreams had been crushed (that’s for another post), and someone was going to be with me 24/7. For a creature of isolation, this was going to be a big change.
I made it 5 days and then aspirated vomit into my lungs. Having done a sputum sample I’d grown some nasty bugs and needed some IV antibiotics to treat it. 10 days after spending over 6 months in hospital, I was being readmitted. This was to be a simple couple of days impatient so that I could pass my test to treat at home. This, however, being me meant things didn’t quite go that way. What I hadn’t been told on admission was that my kidney function had gone awry. I continued with treatment and then one day I started becoming really drowsy and unresponsive. The nurses weren’t worried and thought I’d just had too many of my drugs. I was in a state; I was very distressed, as I couldn’t work out what was happening and why I couldn’t stay awake etc… The night team came on and the HCA went ape, she demanded a Doctor came to see me immediately I was completely different to the night before.
The doctor came and informed me that my kidney function had deteriorated even further, and that I had nephrotoxicity because of the opiates and benzodiazepines I was taking. She started treatment for that and kept an eye on me over night and into the morning. Around the same time, I’d had a bag of TPN and started feeling increasingly unwell. My obs were further off, and my central line tunnel was very swollen and painful. I’d become septic for a third time, despite already being on strong IV antibiotics. My heart rate slowed right down, my body was struggling, and I was actually very scared. Thankfully, with aggressive treatment things have recovered – my heart rate is still very slow at random, points and my kidney function is not completely back to normal. I have kidney pain now from the Acute Kidney Injury, but I’m hoping in time that will change.
I was eventually stabilised and managed to get home, but things have been rough since then. Having gone into hospital in September it was now April and I’d fought for my life three times in six months, lost my hopes and dreams, and had a completely new lifestyle to work with. I have permanent back damage, and have only just started managing to sit up straight again.
My life changed majorly and it was one of the scariest and exhausting experiences of my life.
Where I go from here unknown, and is definitely for another post.
If you’ve managed to get this far, I’m very impressed and I’m sorry it’s so long, but for an 8 month long rollercoaster ride from hell I’ve done my best to condense it. Thank you for your efforts, and of course to everyone who supported me during this hell.
Training has been going rather well recently, I’m not as fast as I’d like, but then what athlete ever is!? But my endurance is improving, and with that should come speed, so fingers crossed it is on the right path.
I’ve been trying to look at the nutrition aspect of my training recently. This of course is a very complex area for me given that I can’t tolerate much food orally and only absorb part of what I do manage to tolerate. Both my gastrointestinal team and respiratory teams have some involvement in my nutrition, the latter because of my reflux affecting my lungs. Each have an opinion about what should and shouldn’t be done, and me being me, generally have a different plan to both of them!!
Whilst they argue it out, I’m focussing on the basics- hydration during the day being the biggest, and the focus today. I get my primary fluids overnight in my IV bag, and can only tolerate around 300ml of oral fluid a day. So I need to make that 300ml contain the most value it can. I need to consider what I need, what I can tolerate and what I have planned for the rest of the day and the next days. I can rehydrate effectively day to day with my IV fluids, but trying to quench a post-training thirst, or rehydrate after a sweaty first session are not so easy to do. It’s not practical, nor safe to hook up extra IV fluids every day due to access and de-accecessing requirements. I will do it if it’s a dire emergency but it’s not ideal in any way (for my personal situation).
Some things I tolerate better than others, and at different times I tolerate different things. Generally water is the fluid I struggle most with, so I have to avoid drinking pure water. Instead if it’s just for rehydration as opposed to for refuelling, I’ll use an electrolyte tablet added to water, as I tolerate this reasonably well. If I need calories as well as electrolytes I’ll use a carbohydrate powder mixed in and for ‘Recovery’ I’ll use a protein/carb mix, but I find that hard to digest so tend to only use that on evenings.
I am pretty obsessed with fluid balances, output/input etc as well as weight. Dehydration is known to have a massive impact on performance not only physically, but mentally. A quick search produces thousands of articles discussing the negative impact it has, as well as hopefully mentioning the dangers of overhydration, so I’ll skip the details. Dehydration also affects one of my other health problems, so I have to be extra careful- I’m still learning though, and for me it’s not an exact science as so many other things affect my stomach and its ability to tolerate oral fluids. My days of glugging down a big glass of ice cold juice are well over, although I dream of this on a hot evening, because if I over do the fluids I end up with them coming back up, and my hydration levels worse than they were before I started.
Unfortunately with the summer coming, things get that bit more complicated, as I need to find some way of getting in extra day time fluids without being able to increase what I put in. It’s difficult and we’re still balancing it out, but now I have a second line in, I can piggy-back fluids to run with TPN, without it taking any longer. I’m hoping that this will work, this is the first year I’ve tried this so fingers crossed it works out okay. The risk with this is that I end up with fluid overload and best case scenario end up taking a lot of loo breaks, the worst case heart failure. So it’s a delicate balance!!
The downside to there not being people around who have tried this before, means you’re kind of on your own out there. It’s a work in progress, and I’m hoping to work with a sports nutritionist soon, so he might have some ideas, but due to the circumstances has never worked with a TPN athlete before- at least he should know the basic nutritional stuff, I just go with common sense and try and make some educated judgement calls.
It’s now less than a week to Henley Women’s Regatta, so I’m started to plan my fluid options for that. Thankfully I’ve only got the one race, so it’s easier in terms of hydration than last year, but is very much weather dependent and based on pre-planning estimates.
Hopefully it’ll work out okay and I’ll be a nicely pre-hydrated, ready to kick butt on Sunday!!
That’s the reality. Three years ago I started TPN, it saved my life, and completely revolutionised it.
I wrote extensively on this topic 2 years ago here: https://rowrowyourboat.wordpress.com/2013/06/01/365-little-days-later-why-pinnt-means-so-much-to-me/
Now I am back, this time to talk about fundraising for them. They’ve stuck by me as every challenge has cropped up, have introduced me to some fantastic friends and some random people who I love dearly. I have three years of additional life to celebrate, and I have definitely done some living in those years.
On Sunday I take on the Bupa Westminster Mile- don’t worry I haven’t suddenly learnt to walk, I took up wheelchair racing as part of my cross-training, so I thought why not give it a go?! It’s time to repay the favour, to ensure they can continue their fabulous work, plus I get to race (can take the rower off the water, but can’t take the racing mentality away!!).
I only started training for wheelchair racing in February and much has been punctuated by niggles and meetings getting in the way, so I’ve not had many sessions, and seem to have the worrying knack of tipping my chair, including in my first ever race!!
I’ve now done 2 competitions and 7 events across those, I’m not fast, but I’m having fun- although I have collected 5 medals and a third place out of those.
I hope anyone reading this will take time to read my fundraising page http://www.virginmoneygiving.com/claireconnon where I wax lyrical about the work PINNT do, and consider sharing and supporting this fantastic charity and my crazy endeavour!!
—–Please note MY autism, this is not reflective or representative or any other person with autism on the spectrum, this is my story and even then doesn’t do the complexities any justice in the slightest.——
Yesterday was World Autism Awareness Day. Yes, yet another one of those darned awareness days that come up on your timeline and you think what does it matter to me?
Well it doesn’t, not really, but it matters to some people. I’ve spoken about my opinions of awareness days previously and this one seemed to go off very quietly compared to some of the awareness events I’ve seen previously.
As for me, I’m aware of autism, 24/7, 365(6) days a year. Why? Well if you don’t know you’ve clearly never spent any time with me in person, and if you’ve not had that dubious pleasure, then I was diagnosed with an autistic spectrum disorder a few years ago.
It had been obvious to myself since I was very young that I was different, I didn’t like what the other kids were into, I was too weird, even for the weird kids. I didn’t want to be in groups, and preferred writing and studying to painting, had an obsession with reading and various other ‘normal’ things that combined with some not so ordinary things weren’t picked up on until I was in my late 20’s.
When I was at school, many still believed autism, particularly Asperger’s (as it was at the time) was a male only disorder; they had just about mastered checking for dyslexia but anything more than that was beyond them.
As a girl, I presented typically, but here is the crucial difference, I presented typically for a female- unfortunately this is still a very much unresearched area, but there appears to be key differences. Even my Special Education Needs trained mother missed the diagnosis. Looking back she says she can see it clearly now even from when I was a tiny baby who wouldn’t be left with anyone other than my parents, but even then didn’t really want to be with them. It was much more complex than that, but hopefully you get the drift.
I never hugged on a regular basis until I went to uni at 18. I had never settled at school, I loved getting an education, but had very little interest in my peers. Uni was a change in so many ways. The perks of going to Cambridge are numerous, but one is that research has shown it to have a higher than average percentage of people with ASD, which is hardly surprising considering what you need to achieve to get in there!! I was finally in a place where I could be myself, a very strange experience and hugely overwhelming, those first few days of each new year were particularly hard as you had to get used to change all over again.
That’s all in the past though, the point of this is what it means to me to be autistic day to day. Well I don’t know. I’m not autistic day to day, I’m me every day. Autism is just the way my brain is programmed, and therefore it’s all I’ve ever known. It’s impossible to know if something is a Claire-ism, a quirk like any neurotypical person has, or because I’m autistic. Day to day I’m used to how things are. My head is like a constantly whirring motor seeing all the little things you miss, hearing the conversation you’re meant to, plus those all around you, hearing every noise (I had to ban cat scarer devices), all the idiosyncrasies you don’t register, ever seen Monk? Well my brain is like that all the time, just with less germ phobia!! It’s exhausting, spotting things that aren’t done correctly, and by correctly, I mean in the manner which befits my brains working. Ever had an argument with a 29 year old about putting the wrong sock on first- yes it does matter. Maybe not to you, but in the rules of my world it does.
For me those rules aren’t optional. People talk about it like it’s an anxiety disorder where something horrendous will happen if things don’t occur in a particular order, but that’s not the case, the rules are put in place by my brain and are so that things sit neat and ordered in my head, they stop some of the chaos waving it’s arms so violently around, but if they are broken, although I may have a melt-down, I know there’s nothing going to go wrong because of it is. A break from the never ending chaos that goes on in there would be strange and probably unsettling, after all I hate change!!
The only time I get a calm in my midst is when I’m out on the river, I don’t know what it is about rowing as such, but the escape I get whilst I’m rowing is fantastic. Maybe it’s because I can focus on the structure, there’s no space in my head for all the little “Me, Me, Me’s” waving their arms around, there’s space for technique and that’s about it.
Autism is one of my newest diagnoses, although along with my genetic illnesses, I’ve had to live with it the longest. It’s strange as although it has a massive impact on me generally, I find it is one of the least complex- it isn’t going to give me sudden breathing difficulties or sepsis, for me to live with. Maybe it’s because I’m so used to dealing with it, and dealing with it unaided. I’ve had no medical input in that respect since diagnosis, and of course no support throughout school. There are many things I’d like to improve in respect to my ASD, but there’s no funding or networks in place to deal with it, so I just make do. If people can’t handle my autism, then that’s their loss, because beneath the crazy exterior of my ASD, is just a crazy, human being like the rest of you. Oh and you miss out on the penguins, all the penguins.
It was amazing. Truly inspiring- a word I try to avoid using too often, but genuinely you could feel her passion as she spoke. It was interesting hearing some of my own rational for the things I do, being spoken aloud. I can understand why she wants to return, to be the best in the world for as long as possible is a great aim in my eyes, and I don’t blame her. If you can do it then do. Life is too short to live with regrets and ‘what ifs’.
My friend I took as my assistant was sent down to the front to see if Katherine would come and see me as I couldn’t get down to her. She spent ages with me, thought my boat looked fantastic, posed for a few photos, and wrote me a good luck message!! She seemed genuinely interested in my experience and what I’d been through which was pretty cool.
I was buzzing that evening, it renewed my focus on training and reminded why I was doing what I was doing.
Sadly it didn’t last- I’ve been fighting a chest infection pretty much from November, and eventually about 3 weeks ago, I was referred urgently to a respiratory consultant as I had a very serious bacterial lung infection, I’d been in the gym that morning and the doctors weren’t entirely sure how I’d managed to keep going. I was started on home IV antibiotics, but a few days later I realised I wasn’t doing too well and was brought into hospital. I’ve been here two weeks, bored and feeling like I’m wasting a bed, but I’ve been lucky apparently so yay!!
Home today, and already planning when I can get back into training, going to start slowly building lung strength as well as generally getting stronger. I’ve been doing a bit of sports psychology reading whilst I’ve been in, as well as catching up on a few documents I needed to write. Unfortunately I’m limited on the ward as there is no Wi-Fi, only in the main concourse, which when you’re having multiple IVs, waiting to see consultants, physios, dieticians, specialist nurses, and anybody else who might need to be involved, plus having visitors (which is always awesome) and oh being pretty unwell mean work has been limited and succeeded by sleep many times!!
I’m feeling positive about my future though, these last few weeks have been a bit of a whirlwind, with a new diagnosis, and lots of new treatments to fit into my hectic schedule- Anybody know how to add a few hours into the day?! But I’m determined, this combined with my other respiratory team may actually manage to get on top of the situation and sort things out, which will make me hopefully an even more able rower when my lungs aren’t restricting me so much.
I kept being visited by people from the chaplaincy, not sure what it was about me, that attracted them (other than the first two who discovered I was the only one awake on the ward- first time I’d been awake at that time since I’d been admitted!!) but I managed to see 4 of them in the space of about a week. They were all lovely and caring, but kept telling me I’m inspiring. I’m really not, I’m not doing anything special. Just fortunate to have been given the life I have and I’m determined to make the most of it. I want to put my mark on the planet someway, make my life mean something- pretentious perhaps, but I hope that I can do something for the greater good in my life.
I am grateful, I have my family’s support, fantastic friends, a good network of support, talented HCPs involved in my care, a roof over my head, nutrition, a job I love, a decent education, I don’t go without and am in the position to do some volunteering. What more could I need? My QoL is pretty darn good when I’m out of hospital.
My life is complex, not the one I set out to life, or a path I ever expected to find myself down, but I am, and I am going to make the most of it, and make sure I appreciate it as much as I can.
Next project is getting back to health, and getting back into my degree. Wish me luck.
There’s no real reason I haven’t blogged, other than lack of time and nothing much to say.
Let me start with the traditional January pleasantries (when exactly is it late enough in the month to stop saying these?!)
I hope you had a lovely Christmas, and a happy new year. I wish you a healthy and fun filled 2014.
Okay before anyone asks my Christmas and New Year were memorable for many of my family whereas they’re completely forgettable (forgotten technically) by me.
The tale starts the 22nd, when we decide due to bad weather I’d drive up that night. All good and fine when I eventually managed to leave at 20:30 for a 2:30 drive. The next day is spent uneventful (for once), until I realise that having come up early I didn’t have enough of my anti- seizures medication to cover the whole period. Trip to the chemist the next day “oh, sorry It’s a special order, we can’t get it in time”, so being sensible we go to the local hospital, who thankfully can supply it after a long wait, but we weren’t urgent, so I’m not complaining, I’m just grateful they were so understanding. They had to go to the other side of the hospital to get some though as it was a specialist drug. So all sorted, ready for Christmas.
Wrong. I wake from a nap, coughing and coughing and getting more and more breathless. This is where the fun began. I phoned 111 who insisted on sending an ambulance. I’m sure emergency docs would have been fine. Except my body decided that having a seizure as well would be extra fun. Had that treated and managed to escape just before midnight. Apparently I was quite entertaining as I was rather full of drugs and insisted to my mum that I could walk, to which she replied, no you can’t now sit down!! That was me told.
Christmas Day I don’t really remember much of, I was suffering the after effects of the night before. Had dinner did all the usual Christmassy things and then had another seizure, apparently I spent quite a lot of the night in resus and was looked after by a cute doctor (dammit why do I have to be unconscious when the hot doctor is around?!) woke up the next morning very confused as to why I was in a hospital bed. Had multiple seizures whilst there so don’t remember much other than them feeding me mostly baked beans as that’s all they had that was dairy free!! I wasn’t allowed home until I was 24 hours seizure free. Managed it and got home, only to have another seizure, so back I went. Had the same paramedic both times, which was handy.
On the whole I was treated fantastically, received good care and the doctors tried their best for me. Nobody knows why I had so many as usually I only have one, could have been a virus, they don’t know. Given they don’t Know for sure what causes them it’s difficult. I’m hoping the neurologists will shed some light on them ASAP. I’m grateful they’re not epileptic as that would be much worse, but they’re still far from ideal.
I managed to get back down to Cambridge the next day. Upon which I was sent to A&E as there were concerns that my retinal tear had got worse. Assessed the next day in emergency eye clinic. Thankfully no worse and should be safe without treatment phew!!
I thought that was it, until New Year’s Eve, I partied hard- we painted a friends house!! But then the coughing started and I became breathless: got home and rang for help. Due to 111 not being perfect they put my lack of proper breathing down as low priority!! Poor paramedic was not impressed although worryingly we remembered each other from a previous visit!!
It was a long night in A&E not that many drunks, but it was very busy. I think it worked in my favour as I was actually put on a ward round so saw a specialist who was quite helpful and I saw a respiratory nurse which was handy. I was admitted for the day and let out late that evening.
It’s been fairly quiet here since thankfully, other than a bit of grumpy asthma still. I’ve got a busy month with specialists, but hopefully things are going to start moving forward.
I’m in the process of sorting out changing to Direct Payments from a care agency. An agency who have been an absolute nightmare and I’m garnering the energy to put in several complaints about them. I’ve got two PAs lined up, but no funding as Social Services messed up the admin so I’m stuck at the moment especially as the agency are terminating my contract. So I’m at risk of having no care for a while, which is not going to be good for me.
Why do we have to fight for such basic things? The ‘care’ agency debacle is definitely worth it’s own post, which will be done soon I hope.
I try not to spend too much time in my own head, but a few conversations I’ve had recently have caused me to do some reflecting.
I recall a Paralympian being asked
Did you always dream of being a Paralympian?
No, not before my accident!!
Nobody born healthy plans to be a Paralympian, let alone disabled. It certainly wasn’t on my career plan at any age. I grew up, like so many, with no indication of what lay ahead for me. So how did I get here? Could I have done things differently? Would an earlier diagnosis have improved my prognosis? There are so many questions you can ask, but does it really matter now? I’m where I am and I’m going to make the most of it I can. Do I blame anyone for what’s happened? Was it my fault? Blaming anyone isn’t going to help, pent up anger is only going to expend precious energy, and nobody is perfect, we are not infallible. All we can do is learn from any perceived errors, and try to ensure they’re not repeated.
I write the rest of this from a position I’d become relatively unaccustomed to. I’m back in hospital after an emergency admission, just waiting to get my discharge letter.
Last night was a very long and drawn out procedure, including being told I could wait six hours for the OoH’s doctor, when the EMT who arrived first on the scene quickly identified that I couldn’t wait that long. Whilst we waited for the paramedics we chatted, amongst things he said that I must have done all the
why me? Why did this happen to me?
But in reality, no I didn’t. I was too busy trying to live the best life I could and as someone else once said,
why not me? What makes someone so special that they can avoid their share of difficulties?
I’ve now escaped hospital, after one of my more traumatic hospital experiences. The nurses were fantastic, I was looked after really well, but the actual situation was quite unnerving.
Anyway back to the original point, I’ve known from a very young age that I was different. I didn’t do the same things other children were doing. I never really fitted in, but because I was succeeding at school, (I was fortunate to have a strong interest in academia from very early on) nobody really paid much attention to my social interaction and other difficulties. It certainly made things more difficult as I went through school, but would having a diagnosis in childhood made things better? Or would it have just segregated me even further? I suspected in my teens I had Aspergers, but I didn’t know how to pursue it, and debated whether I wanted to be labelled, when I was having a hard enough time with the bullies on a daily basis.
I also remember being in pain from about the age of five. I particularly remember doing a vault at gymnastics and my knees made a huge cracking noise, which sent pain rushing down my legs. It was always passed off as growing pains, and I spent a lot of time with various bits of me strapped or in tubigrip. There were so many signs that there was something going on, like ‘spraining’ my wrist using a cookie cutter. That ‘sprain’ turned out to be a tear in my scapholunate ligament, which took doctors about 10 years to actually do something about. I was fortunate to be referred to a fantastic plastic surgeon in my early twenties who realised when he could manipulate the bones independently there was clearly something wrong. I owe so much of my hand function to him. As the tear had been left so long other problems had developed, including a thumb joint that spent more time in a dislocated position than it did in place. There was also the time I fell off an inch high curb, and tore ligaments in my ankle- that was a pretty lovely looking bruise!! These are just a few of the incidents. Warning signs were missed, none of my dive or gym coaches questioned all the strapping and injuries that in all honesty I couldn’t explain. I was identified as hypermobile, but that was it. I was doing sports that welcomed flexibility so I guess they weren’t too worried. I guess I do feel a bit let down by them, they just kept pushing and pushing, and didn’t worry that I got pain from doing any high board work. I hope situations like that now come under welfare concerns.
In general I was passed off as clumsy and a bit of a hypochondriac. The GP was fairly useless, we turned up in an emergency as my knees had completely locked straight after being outside for a fire drill. His response “don’t go out in the cold”, very helpful(!). I bumbled on like this for years, spending a lot of time in pain especially with the aforementioned wrist. I used to get in trouble at school as my writing changed style regularly, but it changed dependent on pain and strapping positions. Exams were a nightmare, so much pain whilst writing essays, but I was a case of ‘suck it up, and get on with it’. I passed them all and eventually started university.
I could spend time wondering if things wouldn’t have reached this stage had there been an earlier diagnosis. Instead I realise that the lack of any diagnosis from either aspect taught me to be resilient, determined, physically and mentally tough, motivated and generally it has caused me to be who I am, for which I’m grateful. The skills it taught may never have developed to such an extent had I not been through the situations I’ve been through. I honestly don’t know if I would change how I did things as I could have ended up being a very different person, and I’ve kind of grown to quite like me.
University brought more problems- I took up rowing, which my knees didn’t really agree with. I later discovered they were maltracking which was causing the pain. A physio put me back together on regular occasions, and again identified hypermobility, but said the knee pain was because my bones had grown faster than my muscles, so my knee caps weren’t sitting quite right. He diagnosed me with a few things he could tell I’d had previously, but still nobody took me very seriously. I learnt the art of strapping joints in place with tape, and that was it really.
Things started getting a lot more complicated when I went back to uni for my second year, a chapter of my life which was the beginning of the 5 years I spent with a misdiagnosis.
That however is another long story, but as I said originally none of this was in the plan, but nobody has a life that runs to plan, if they tell you they do, they’re lying!! We all have our obstacles to climb and hurdles to get over, some are just bigger and more plentiful than others.