I Broke Myself. Again.

G'day dingos! (not sure why I said that, but I like it, so it can stay.)

So as you can tell from the title of this post, I haven't had the best of weeks. It started with a reflux attack on Friday 7th. I woke up choking, and it irritated my lungs a bit. On Sunday, whilst rolling around B&M on my Betsy Blue Wheels (my electric wheelchair, I LOVE her!), I had a massive coughing fit, and felt a click in my neck. I started to feel quite unfunky, and when I got home, I went straight to sleep. This should have triggered the warning bells, as when I hurt myself badly, my body reacts by shutting down. I was woken up for dinner, then not long after I went back to bed. Still oblivious as to what was happening, other than my neck being sore from the click.

I woke up on Monday morning and all hell broke loose. I was in a ridiculous amount of pain, and the slightest turn of my neck sent an agonising pain rushing through the back of my head, and blurring my vision. I spent the day in my onesie, with my Gryffindor scarf wrapped around it to keep it warm. At about 3pm I went back to bed, to try and see if I could sleep it off, to no avail. After being ranted at by my mum and brother, I agreed they could call 111, hoping they would send a doctor out to me. Instead, I got an ambulance. Oh joy. 

The paramedics were absolutely lovely, did some quick research on EDS and helped me as best they could. Thankfully, they didn't feel the need to put me on a spinal board (I bloody hate those things!), so they wheeled me out, accompanied with a canister of Entonox and my Mum. You know how they write all the info on their gloves? Lady paramedic literally ran out of room on them by the time I'd finished giving her all of my health problems, meds and the problem I was experiencing. That amused me a bit. 

I was transferred into a cubicle at A&E, and given more Entonox. After about an hour and a half, a nurse came to do my observations, and said she would get me some morphine. Another half hour later, she arrived with codeine. I really didn't care what they gave me to be perfectly honest, I was most worried about the pressure building in my head and the blurred vision. Finally a doctor arrived. He tried to blag that he knew about EDS, but it was absolutely blatant that he had no idea. He came back another 45 minutes or so later, saying he had spoken to the consultant and that I had a severe case of spasmodic torticollis resulting from a bad sprain to my neck. He also told me that EDS would have no effect on vertebrae. HA. Shows just how little he actually knows about it. A hefty dose of diazepam later, plus a recommendation that I was sent to the pain clinic for medication review, and that I needed to see my GP within the next two days, I was allowed to go home. 

It has been an extremely uncomfortable few days to say the least. I spoke to my GP on the phone, and he prescribed diazepam, but as yet there has been no improvement. I had a horrible incident where my head turned in my sleep, which caused pain so intense I woke up and cried for an hour. I don't like crying, so I know it's bad when I do. 

I was booked in to see my GP yesterday anyway, so off I went. He had a feel around my neck, said I had narrowly avoided being sent back to the hospital, and upped my diazepam. He basically said that the pain clinic was pointless, they would just mess around with my usual meds which would be of no benefit to me. I mentioned the research I had done in to upright MRI scans, and he agreed to refer me back to neurology with the aim being a referral to one of the clinics in London which does them. So fingers crossed there. 

Obviously this further setback has not helped my mental state, and I am really struggling. However I am going to be seeing the pain focused psychologist at Greenacres, which will hopefully help.

I find it incredibly ironic that my third ride in an ambulance came exactly a year and 6 days since my last one. The time has gone so quickly, and I am no further on - in fact, I am worse than before. I just hope that I will finally get some answers soon. In the meantime, I will leave you with a couple of selfies I took in A&E (I don't remember taking them haha!) to chuckle at. 

Yes, I went in my Zebra onesie. They still didn't get it.

My Visit To A New Hospital - The Royal Free

Good Evening (or morning, by the time I finish this!)

So last Friday, I took a trip to a new hospital. This is quite an achievement for me - I've been to many! I went to the Royal Free Hospital in Hampstead Heath, London. The reason for my visit was a SPECT/CT Scan. 

I was referred for this scan by my new ankle consultant. He's quite awesome, and I have a lot of faith in him - which I don't get with medical professionals very often any more. I had my ruptured ATFL Ligament in the HulkFoot™ repaired last year, after 6 months of telling the local hospital that something was wrong. 

It can be very difficult to explain EDS to some A&E Staff - they haven't all encountered it before. I was originally told it was just a sprain, and that I would be fine. When I argued that it just wasn't right, I was told they would make me an appointment for 6 weeks time, but they expected I would be cancelling it as I would be absolutely fine. I didn't cancel it, and I didn't get better. At the next appointment, I saw a lovely man who referred me straight to the ankle specialists. One MRI later, and my ruptured ligament was discovered. Off to surgery I went, for a procedure called the "Brostrom Repair". Time went by, and I worked hard at my physio, but a combination of mishaps led to my ankle refusing to bear any weight again. I was still under the care of the consultant, but he retired in December. I was transferred to the new consultant, and attended his clinic a few weeks ago - post about it here. 

His recommendation was a SPECT/CT scan, and the nearest hospital that offered it was the Royal Free. I expected a bloody long wait, but the appointment came through very quickly - I was very surprised! Pleasantly so really. The way it was described left me feeling a bit apprehensive. 

On Friday morning, Dad and I toodled off to Hampstead Heath. We got there very easily, which was good. I cannot lie, when I saw the Nuclear Medicine unit was in with the Oncology Department, I was fairly scared. We stopped at the shop (the hospital has a WHSmiths!) and got some sweets and drinks, which was good as it gave me an opportunity to calm my nerves a bit. Then we headed down to book in. It had that very sanitary smell, that seems to be particular to cancer units. Its quite a strange smell really. 

Anyway - we booked in, and sat in the waiting area. A lady next to me had a beautiful pair of leopard print slippers! I loved them, but she didn't know where they had come from, as they were a gift. Boo! We weren't really waiting long, and we were called in 30 minutes before my original appointment time. Winner! In we went. I was fairly surprised, as they allowed my Dad into the room. I was expecting that not to happen, especially when I was about to be injected with a radioactive solution! 

I was helped up onto the bed, which had a conventional looking CT Scanner - the polo shape - at the end. I was asked to lie down, and turn my feet into a fairly uncomfortable position. My knees instantly hyperextended, so I asked for something to go underneath them. The radiologist was great, and made sure I was comfortable. Then he taped my feet together! Not cool! My hips were unhappy, but it had to be done, so I gritted my teeth. 

Next came the injection. My veins didn't want to play on the left hand side of me, but my trusty one on my right elbow was ready to go. The syringe came out, encased in lead. That made me chuckle a bit. It was a pretty big one too! I'm not one of those people who shy away from a needle, or any medical procedures really - I love to have a good look at what's going on! So I watched it go in. It's left me with a fairly big scratch, but it went in fine. Then it was time for the first of three scans. It was over very quickly really, which I was very thankful for, as my poor hips were very subluxed and uncomfortable.

Next came a 4 hour wait. During which I had to drink lots. Ack. I am not a big drinker really, particularly under pressure. I reflux quite a lot, and it puts me off filling up with liquid. I slosh about! We took a stroll (well, Dad did - I took a roll!) around the town, and settled on a cafe just at the bottom of the hill. I can't recommend this place enough! It had a step to get inside, but loads of tables out front. The lady running it came straight out to us, and spoke to me. Sadly, when I'm in my wheelchair, a lot of people talk about me to whoever is with me. It drives me absolutely mental, but I understand some people just find it awkward. This lady spoke straight to me, which was really lovely. She was brilliant - took our orders, rearranged the furniture so my wheelchair had a clear route, and really looked after us. The food was bloody lovely too. 750ml of water had now been consumed. 

Next door was an M&S Food shop. I cannot go past one without getting some Percy Pigs. Nom. So we took a wander round there, and a woman who wasn't looking where she was going, walked straight back into me and almost sat on my lap. I did chuckle a bit, but it probably would have really hurt if she had landed on me! We got Percy Pigs, Reversy Percys, Walnut Whips and Mint Whips. Also, a litre bottle of water. I've never seen a litre sports cap bottle before - so if you would like one, M&S is the place to go. 

We killed some time sitting in the shade of a tree, then took a trundle up to the hospital again so I could use the loo. I then did a bad thing - but in my defence, I didn't know I wasn't supposed to - I used a normal disabled toilet. I should have used a specific radioactive waste one. Whoops. Then we went back to the WHSmiths, bought Ice Lollies, and went out to the seating area at the front of the hospital, to watch the world go by. By this point, I had gotten very very hot - something I had been warned might happen. We sat, and I consumed the litre bottle of water. Then Bill Nighy came out of the entrance! He looked very smart, a really well cut navy suit, and rocking the geek glasses. I thought about approaching him, but figured he had just come out of the hospital, and probably really wouldn't appreciate fuss. 

15 minutes before my return time, we headed back in to the Nuclear Medicine unit. At this point, I was segregated from unradioactive people, and had to sit in the Yellow Area. This did have a bonus - a whacking great TV which was showing the tennis. I then used the Radioactive Waste Toilet. It was monstrous! Absolutely massive. And the flush! Oh my god it actually roared. I jumped out of my skin! 

The radiologist came to get me, and off I rolled to the next scan room. Dad wasn't allowed to come in this time, so he sat and dozed in the waiting room. Like before, I was put onto a bed, and they gave me a knee support straightaway. I had to then put my feet against a foam wedge in the same position as before - and you guessed it, they taped me up again. I knew this was going to take a lot longer than before, so I tried to use some of the relaxation techniques I got from CBT. Usually, when I have MRI Scans, I rely on music to keep me calm, relaxed and still, but I didn't have that option. Eeep. There were two scans being done here, 1 immediately after the other. The first was for my entire body - checking my bone density. A flat panel camera was used, going down the length of my body. I don't really handle things close to my face at all (I think I mentioned that in a previous post... not sure!), so I closed my eyes and thought of nice things until it was done. I almost went to sleep! The radiologist came to tell me the first scan was done, and the next one was about to begin. This was just for my feet. Another Polo shaped device, but this one whirred so hard and loudly I thought it was going to take off! This bit didn't take anywhere near as long, which was good as my poor hips and ankles couldn't take much more!

The second part took around 55-60 minutes, but to be honest, for the first time ever, I found the CBT stuff useful. If I have to have any scans without music again, I will definitely be using it. 

6 days on, and my hips and ankles are still cross with me, which isn't good. However, it had to be done, and hopefully it will help my consultant work on a way to help stabilize the HulkFoot™. Whether it be fusion, modified Brostrom Repair, or something totally different, I hope that there is a way to fix my ankle to a standard that I can actually place weight on it without it giving way on me. The effects of it are spreading to my knee and hip, and it is not helping my back to heal at all. Which is really not good. 

The real plus of this, is that my Consultant is very interested in my condition, and it seems like he wants to explore it for his CV. Which I don't mind - I'd rather have that than be abandoned to live with an ankle which doesn't work. I want to walk normally again. I want to wear normal sized shoes. I want to not have to take my shoes off because I'm cutting the blood supply off due to swelling. I am hopeful that some of this is achievable. 

The scan process itself was relatively easy, but had painful moments - mostly due to being an EDS-er. I was hot until about 12 hours later, then cooled rapidly. Other than that, there were no side effects really. (Some toilet info, which is really TMI!). 

 I can't say I enjoyed my visit to this hospital (nobody ever enjoys it!), but it was clean, efficient, and organised. Which is always a plus.

I will report back with the results after my next visit with the Consultant. I find it all very interesting, and hopefully I will get to see the images! If any fingers could be crossed for me, that would be most appreciated :)

*If you read to the end of this, you are a star! Thank you for taking the time to read my essay - I never intended for it to be so long, but the words ran away with me!*

Hospital - Fiasco Followed By Faith

Hello!

Well today's hospital visit was an eventful one. 

We got there nice and early (after the last visit where the car park was so full that we got in over half an hour late!). The hospital is having a bit of an upgrade (not sure if that's the right word, you can't polish a turd and all that...), and the usual clinic is currently a building site, so today it was being held in the private suite. I thought that would be quite exciting, but it was equally as shit as the main hospital! 

As soon as we got there, the nurse informed us the clinic was already an hour behind. Oh joy of joys. The room was also RAMMED with people. So much so, that the nurses asked people to move into the corridor because of a fire risk. I suspect they may have recently had a smacked wrist, because another nurse then came and said it was a fire risk for them to be in the corridor! 

Time ticked by, and when it hit 12.30 (2 hours past appt time!), I asked when I would be seen. I was told one person was in front of me. Two people were then seen, and at 13.00, I was finally called. Huzzah right?

WRONG. 

I was wheeled into the room to see the consultant. He saw me in Feb for my suspected Cauda-Equina, and asked how I was getting on with my back. We chatted a bit about that, and then my fetching splint (which I then told him was about as much use as a chocolate teapot!). Then he asked the Sister if she "had chased it up yet?". I thought it was a bit odd. She answered yes in the most unconvincing manner ever. He then asked if she was sure several times, and she then buckled and said no.

My MRI report was MISSING. The entire reason for my appointment was not in my paper or electronic file. And I was not the only patient from today with that problem. 

The consultant was very apologetic, and explained that he was liaising with a radiographer at the other hospital in the Trust to get it done in the next hour, as the dictated version was in their systems. Said to go for lunch, and he would see me in an hour at his afternoon fracture clinic. So off we toddled for lunch (which actually wasn't horrendous, minced beef and onion pie with chips), then back to fracture clinic. 

I got in to see him, and waited a wee while for him to go through the report. He came in, and said I was a "complex and challenging case". He had a bit of a feel around the ankle and foot, then dropped the bomb on me that the surgeon who did my first op had not repaired the ligament as he said he had - he's taken another bit of tissue and pulled it down instead! Whaaaat?! He mentioned fusion - which he said he was not willing to do lightly due to my age. At that point I told him that I would do it if it meant no more instability in my ankle, and it's subsequent effects on my knee, hip and back. I think he realised then that I was serious, and mentioned two other possible options - a rerun of my last operation, but heavily modified, and another op which would involve donor tissue being bolted into place to strengthen my ankle. 

But he then explained that he was not happy to conduct any surgery to correct the instability without finding the cause for the pain first - he wanted to tackle both together. I can appreciate that. 

So my next step is going to a hospital in London for a SPECT CT Scan. I will be injected with a radioactive isotope and the scan will put together a complete image of my ankle so we know exactly what is going on. Once I get those results, it will most likely be surgery. I have faith in this consultant, that he will do his very best for me. 

I finally got home at 15.00. From a 10.30 appointment.

So I am still in total limbo with my future. My job is hanging in the balance. I am still unable to walk without a frame. I am still relying on a wheelchair for anything outside of a household environment. And my knee has now given up in sympathy with my foot.

And I am under bed/sofa arrest until Thursday. I am exhausted and no use to anyone or anything. After I've seen Gold Rush, I will be decamping to my bed. And staying there until I have the energy to move again. 

First Blog From My Second Home

Good Evening!

Today I am posting from the Uberman's house. I bloody love it here. His family are amazing!

I had a pedicure today, from Shaz (Uberman's older sister). It was the first time I've ever had one, and it was bloody lovely! My poor feet are a bit neglected because I can't get down to them very well any more. Today they had a lovely soak in a foot spa, with some salt crystals. Then they took a good scrubbing from a scary looking metal device. Usually I have majorly ticklish feet, but since my mystery back/neuro problems, I have lost a large percentage of the feeling in my legs, so I barely felt it lol! Always a bright side right? Hehe. After that came a scrub with salts. Rinsed and dried, then a gorgeous smelling moisturiser. Oh my gosh. My feet are so soft and smooth! Then an even bigger treat... I have beautiful red toenails! I feel so pampered, it was really lovely. My feet have never felt so looked after! Just in time for Tuesday's appointment for my ankle MRI results. Eep. 

I am very apprehensive about Tuesday. My ankle was bent back by an idiot at the Paralympics last year, only 3 weeks after the repair. I am pretty convinced it damaged again then, but I also had a fall down the stairs which didn't help matters. I am back at square one, unable to weight bear without my ankle giving way. I followed that with a back injury which really has screwed me up. I went from crutches to a frame, with no choice but to bear weight on my collapsing ankle. The stress on that leg has now caused my knee to give up on me, and I am getting increasing instability in my hip. Not fun. So Tuesday will hopefully get me some answers and help to stop my body totally plummeting into meltdown. Hopefully. 

Tomorrow I will be sorting my clothes out. Ack, Wish me luck!