Monday, 4 April 2016

Pain doctor, exciting news and I finally had my operation!

I need to start by apologising for leaving it so long again - I must do better! Things have been a little crazy with Uni deadlines and my health not being great, but I've now finished all my work for this year and am looking forward to focussing on my health and my blog a bit more. I can't quite get my head around the fact that I've basically finished my first year of university - where has the time gone?! 

Things with my health have been a bit up and down, and as well as my usual medical appointments a few other things have been happening. I saw my Pain Consultant a couple of weeks ago - I hadn't seen this one before, as my old one moved to Canada, so I was quite apprehensive about it. But he was really nice and seemed very understanding. He told me to increase my Pregabalin, as I'm still on a very small dose. Then in a few weeks he wants me to reduce my Tramadol again (the aim is for me to completely come off the Tramadol so I can start a motility drug for my digestive problems). I spoke to him about the fact I'm not that happy with the Pregabalin, as it seems to be causing me to put weight on, but he just said that unfortunately that's one of the side effects. He's also decided to take me off the waiting list for injections in my back and neck, which I was quite upset about as I'd pinned my hopes on them helping a bit. But he seemed to think they wouldn't help and could actually make things worse, so it's hard to know who to listen to.

Over the last month or so I've seen a few friends, which has been lovely. I found out one of my closest friends is pregnant, which I'm so excited about for her and look forward to meeting baby in September. My friend Charlie also popped over one Friday afternoon with her little girl Izzi, and presented me with two large gift bags full of goodies for me. I was completely overwhelmed to find out that a few of my friends had got together to surprise me with lots of things to make me smile, and it completely brightened my week! I also caught up with my friend Katrina, which was great as we don't get to see each other that much any more with living in different places. But what was even more exciting was when she asked me to be her bridesmaid next year! I must admit I got a little teary eyed when she gave me the cute card. She's getting married in Ireland next August, and because I'm going to need my parents to travel with me, we've decided to make a family holiday out of it. I've never been to Ireland before and can't wait to explore it a bit!

Goodies from some of my friends

Card that Katrina gave me
Talking of being a bridesmaid, I've also been doing some wedding planning for our two family weddings this summer (both of my brothers are getting married in case you're a new reader). I've done some Hen Do planning for one of my sister-in-law's to-be, which is getting quite exciting (if a little stressful!) And we also had a hair trial for my other sister-in-law to-be's wedding, so that was fun getting a better idea of what we might look like.

Finally, and probably the main topic of this post, is that I've had my operation! For those of you that know me, this is the operation I was meant to have last August (but when I went into hospital I had a seizure, so it had to be cancelled while that was investigated). I was so nervous last Wednesday evening and Thursday morning as I waited to go into hospital. I was due in at 1pm, and was shown to my bed where I had to change into my gown and some rather sexy stockings to help prevent blood clots.

The anaesthetist came to see me and we chatted through my illnesses and what drugs he was going to use. I was then seen by the surgeon (not my usual one for some reason, but he was nice all the same) and we went through what would happen during the operation and plans for afterwards. I took a pile of magazines and books in with me to keep me distracted while I waited, but it turned out I was near the top of the list, so was taken down to theatre soon after seeing the doctors. 

This was my third general anaesthetic, so I knew what to expect (although that didn't make it any easier!) The anaesthetic team were all lovely, and we had a good chat while they were prepping me for the operation. The next thing I knew I was waking up in recovery, feeling rather sore and completely wiped out. One of my biggest worries was having to stay in hospital after the operation, as that's what's happened the last two times. But thankfully, although it took me a few hours longer than they expected, I felt well enough to go home. 

I pretty much spent the whole evening (and the next couple of days!) crying, but that's happened after all of my anaesthetics, so I'm pretty sure it's something to do with that. They put a new catheter in after the operation, just until things settle down. They've given me the equipment so I can take it out on my own, and then it's just a case of wait and see. The surgeon said that this won't be a permanent solution to my problems - because of my EDS he said I will never be able to empty my bladder properly. But we're hoping I can at least go back to self-catheterising for as long as possible. I don't know whether the operation will need to be repeated again in the future, but at the moment I'm just trying to focus on getting through one day at a time. I'm still recovering from Thursday, so trying to get lots of rest and sleep!

I will try and update you again as soon as I can, but you know what I'm like! I'd love to hear your news though, so please do leave a comment and let me know what's been going on in your life.

Follow me on my other blog Ramblings of a Jaffa Cat

Monday, 22 February 2016

A very long-overdue update!

It's been a long time since I last wrote a post on this blog; last August in fact! So first, let me apologise for being so quiet on what was meant to be a place where I regularly update you on what's been going on in my life. The last five months have been a bit of a roller coaster, and I've struggled to keep up with all my commitments, so unfortunately some things, like this blog, fell by the wayside. I kept meaning to update, but every time I thought about it I couldn't get my head around how to catch you up with everything that's gone on, so put it off again. But I feel like it's been too long now, and I really want to have a more relaxed space where I can just post odd bits and pieces more related to my health. I love my main blog - it's a space I can feel like me and indulge in my loves, like beauty and fashion, without always having to think of my health. But I have realised I also need somewhere that I can just pour out all those things in my head that I struggle to make sense of, and I think this blog fulfils that purpose.

If you hadn't noticed (or are a new reader) I have decided to change the name of this blog from 'Unicorns and Floral Crowns' to 'Zebra Crossing.' When I originally started this blog I just couldn't think of a name I liked, so ended up combining a couple of things I love. But after a lot of thinking, I decided I wanted it to reflect the fact that this will be a place I can talk about my health, and Zebra Crossing came to mind. People with EDS are often referred to as zebras, if you were a little confused where the zebra came from! I've been thinking about the best way to bring you up-to-date so I can start posting more regularly, and have decided to break it down a month at a time, doing a quick round up of what happened each month. I hope it won't be too long and boring!

August 2015

In my last post I told you about having a seizure while I was in hospital waiting for an operation, so a lot of August was spent recovering from that, and my holiday in Cornwall. I had an appointment with an orthopaedic specialist about my hips, which have always caused me a lot of problems. As I expected, she said it is due to my EDS and the connective tissue not holding the joints together properly. I'm giving physiotherapy a try, but there is the possibility that I may need surgery at some point in the future. 

My Dad also arrived home from Japan, which was lovely, as I'd really missed him being away for three weeks. It was great to hear about all his adventures, and he brought us back some lovely presents, including a beautiful traditional Japanese costume for me. 

I also saw my Neurogastroenterology Professor up in London, which was fairly uneventful. We talked about me coming off Tramadol so I can try a new drug to try and improve my digestive motility, but decided I needed to wait for my appointment with the pain consultant for guidance. At the end of August I had my appointment at the 'First Fit Clinic' and saw one of the Neurology Registrars. He referred me for an EEG and sent my brain and spine MRI to be looked at by a specialist radiologist.

September 2015

At the beginning of September I met up with my college friends for dinner, which was so lovely, and was exciting to chat about starting on our university courses. We're all doing different things at different places, so won't be able to see each other that often, which is a real shame as we all get on so well. Around the same time, I also had to head up to London for some gastrointestinal physiology tests, which weren't particularly pleasant. Thankfully they didn't pick up any problems with the muscles they were investigating, although it does mean we don't have any answers for some of the symptoms I've been experiencing. 

During the second week of September, I had to make an appointment with a different GP, as mine wasn't available, to discuss the fact I had found a lump in my right breast. I convinced myself it was nothing and would go away after a week or two, but it didn't, so my Mum encouraged me to see the doctor. I was referred to the breast clinic for investigations, but was told to try not to worry (easier said than done!) 

On the 14th September, I had my induction week at university. To say I was terrified would be an understatement! But it actually went really well - I met my support worker, who is lovely, and started to get to know my course mates and lecturers. I even went to the course social, and ended up sitting round a pub table with a load of men, as none of the other girls had turned up!

The week after my induction at Uni, I had to go to Chertsey for my EEG. For those that don't know what happens, they spent ages measuring my head and marking it with a red pencil (not great when you have bright red hair!) They then stuck lots of little electrodes to my scalp, which were connected to a computer. The whole test ended up making me feel quite unwell, especially when I was asked to watch a flashing light. As soon as I got home I jumped in the shower to try and get the horrible glue out of my hair - it took a few rounds of shampoo before I felt human again!

October 2015

At the beginning of October I started a nine-week Pain Management Course, which was run by a Health Psychologist and Physiotherapist. We also had visits from a Pain Nurse, and also a family session. The aim wasn't to get rid of our chronic pain, but instead to equip us with coping mechanisms to try and make it as 'easy' as possible to live with chronic pain. 

In October I also celebrated my 27th birthday, which you can read a little more about in this post on my main blog, so I won't go into detail about it here. At Uni, we had our first trip to a Magistrates Court, which was so interesting (although rather stressful trying to write down all the information we needed to write up a report of each case!) 

After my referral to the breast clinic, I was given an appointment to have an ultrasound so they could have a proper look at the lump. The doctor that did the scan was so lovely and really put me at ease while she checked out the images on her screen. She gave me the news that she was quite certain it was nothing to worry about, but that I would need to see a breast surgeon to have it confirmed, which made me feel a little less anxious. I also had an appointment with my Urologist, who confirmed I had been put back on the list to have an operation with the hope I can get rid of my permanent catheter. 

Towards the end of October, I had my birthday party - a Mad Hatters Tea Party, with some of my spoonie friends. Again, you can read a bit about it in this post on my main blog, although unfortunately I didn't get round to doing a whole post on it. On the 31st, my friend Lilli came round and carved pumpkins with myself and my sister, Bekkah. I think they turned out pretty awesome!

The cake I had made for my party
We went for a Disney theme with our pumpkins

November 2015

November brought with it the Blogger Event that I had spent months organising. It went off without a hitch and it was so great to meet some of my blogging friends. You can hear all about it in this post if you'd like to know more about what happened. I also had my appointment with the breast surgeon, who confirmed that the lump wasn't cancerous, but that I needed to keep a close eye on it, as it has the potential to turn into something more sinister. Not quite what I wanted to hear, but at least I know what I'm dealing with.

A photo from the Blogger Event, taken by Dawn from Dear Mummy Blog

On the 18th November, my dear Granny sadly passed away. It was such a shock to all of us and really knocked me for six, as it was my Dad and I that found her when we went to wake her in the morning. Since then it's been a really difficult time and it feels incredibly quiet at home without her. I wrote a post in memory of her, which you can read here.

December 2015

At the beginning of December I had my appointment with the Pain Consultant, who was fantastic. He had a good knowledge of EDS and carefully looked through my latest MRI scans. He found that I have severe disc degeneration in some of the discs in my spine, which could be contributing to my pain, so has put me on the waiting list for steroid injections under sedation. He also advised me about how to reduce my Tramadol, and started me on Pregabalin. I also saw my Rheumatologist, who was concerned about how weak my hip joints are, so is advising my physiotherapist on some exercises I should try. 

The 7th December was my Gran's funeral, which was very emotional. I managed to read a poem at the service, but there were a lot of tears all round. It was a beautiful service though, and we were overwhelmed by the support from friends and family. A lot of her carers came to pay their respects, which was incredibly touching, as they've been part of our lives for so long. 

I also saw my Professor again, who recommend I look into some new dietary guidance from Dr Heidi Collins, to see if it will help my digestive symptoms at all. He also wants me to start on Prucalopride as soon as I'm able to completely come off my Tramadol. Alongside this, we had the usual Christmassy things going on, which was pretty difficult having just lost my Gran. But we had some nice family time together, and I caught up with a few friends as well.

I went to our local Christmas Market

Our Christmas Tree, with decorations to remember the Grandparents I've lost

Some Christmassy things I did with my friend, Sarah

My siblings and I went to Longleat to see The Festival of Lights

January 2016

At the beginning of January I had an appointment with my local Gastroenterologist, or at least I was meant to. I turned up at the hospital to be told the appointment had been cancelled, but no-one had bothered to tell me! In the end we waited for her clinic to finish so I could still be seen, but because we didn't have my notes it wasn't particularly productive. I told her about the diet my professor recommended, but she said she was skeptical it would make a difference. She also brought up the fact that tube feeding may have to be something we consider if dietary changes don't help. 

Towards the end of January, my Dad drove me all the way down to Kent for an appointment with a POTS specialist. There was a long wait, but it was worth it to see someone who really understood what's going on with my body. He recommended the usual lifestyle changes and wants me to be admitted to hospital to start me on Midodrine. He is also referring me to a urology nurse who specialises in EDS urology problems. 

February 2016

That brings me to where we are now! February has been relatively quiet so far with regard to my health. I've been seeing my physio for acupuncture, which I think has helped a little by taking the edge off my pain. I've also started having some bereavement counselling, which is going well so far. And I saw the Dietician, who is trying to help me with this new diet. But apart from that, I'm being kept pretty busy with Uni work, blogging and planning for two weddings this summer (both of my brothers are getting married within six weeks of each other!)

So that's about it I think! If you've made it this far, then you deserve a gold star or some chocolate buttons! I hope this has given you an idea of what's been happening over the last few months (without boring you to death!) And hopefully I can start writing here a bit more regularly now, so I don't have to keep doing these ridiculously long posts!

I'd love to hear your updates about what you've been up to since I last wrote, so please feel free to comment. And if you'd like to hear about anything in more detail or have any questions, I'd love to hear what you've got to say.

Until next time, take care,

Love Jenny xx

Follow me on my other blog Ramblings of a Jaffa Cat

Monday, 10 August 2015

Holiday fun and strange new symptoms

Hello lovelies,

Sorry I haven't updated for a little while - the last week or so has been pretty manic to say the least. I've got quite a few things to update you on, so I'll start with something a little more positive. Last Monday my lovely friend, Katrina, and I went on a little holiday to St Ives, Cornwall. I'd never been to Cornwall before (I know, I'm 26 and have never been to Cornwall - shock horror!) so I was really excited to go, especially to St Ives, which I've seen so many beautiful photos of. Very kindly, Katrina offered to drive us there and back, which took a massive weight off my shoulders as I would struggle to drive that far. So, Monday morning we packed up the car with our cases and my wheelchair, and off we went to Cornwall. The drive was pretty good and we arrived in St Ives at about 4pm, although it took us a while to find the hotel's car park. We checked in to the St Ives Harbour Hotel and Spa and were shown to our room. It was simple, but nice, and the staff were lovely, going out of their way to help us with our luggage. On the first evening we had a little look round the hotel, booked a treatment at the spa and relaxed in our room for a while, before having a lovely dinner in the hotel restaurant, overlooking the beach. 

We slept like logs after our long journey and Tuesday morning came round pretty quickly. We had breakfast in the same place we'd eaten dinner the night before, then headed back up to our room to get ready for the day. Unfortunately, disaster struck - I was getting ready in the bathroom when I felt the strangest sensation and heard what I can only describe as a whooshing sound. I looked down to find my catheter had fallen out, with the balloon still inflated. My heart sunk. We had been planning to go down to the beach, but I had to break the news to Katrina that I needed to go to hospital to get a new catheter inserted. We went down to reception and asked where the nearest hospital was - they originally directed us to the main hospital in Penzance, but then another lady suggested we try the Minor Injuries Unit down the road first. So we headed down there and had a chat to the lady on reception, who said she would go and chat to the duty doctor. After about 45 minutes I was called through by a lady doctor who asked quite a few questions and then had a look at my old catheter to find out what size it was. She went off to get her kit and then got on with putting a new one in. Thankfully she managed to do it first time, which I was impressed with as they usually have some difficulty. I told her she must have the magic touch, and her reply wasn't what I expected at all. She proceeded to tell me that actually, she had never inserted a female catheter before, so before seeing me she had watched a video on YouTube to find out how to do it! I'm just glad she told me that after she'd done it! 

We headed back to the hotel and had a rest in our room for a short while, before heading down to the restaurant for afternoon tea. For two of us it only cost £20, which I thought was very reasonable. I found it quite hard to eat it with my digestive problems, but I managed a couple of finger sandwiches and a scone, which were all very tasty. They let us take the rest back to our room to nibble on later. 

After letting our tea go down, one of the porters offered to drop us down into the centre of town, which I thought was very kind. We had been trying to work out how we were going to get down the massive hill with my wheelchair, so having a lift from the porter was such a help. Unfortunately because the town is mostly cobbles, it wasn't very wheelchair friendly, but we managed to have a little look around some of the streets and down by the harbour. I even managed to have a Turkish Delight ice cream down by the sea front, which had been one of my goals for this summer. I would have liked to look in a few of the shops and perhaps got some souvenirs, but sadly it was too difficult with the wheelchair, so I had to make do with buying a couple of postcards instead. 

We got a taxi back to the hotel and I had a little nap before we went down to the hotel restaurant for dinner again, not that I could eat much after an ice-cream and afternoon tea! Again, we slept like logs, and Wednesday morning was here before we knew it. We had our last breakfast in the hotel restaurant and packed up all our stuff, which we were able to leave in reception. Katrina got her bikini on and went to use the spa, while I had a drink in the hotel bar, before going down to the spa for my massage. It was all over so quickly, and we packed up the car and headed off on the journey home. It was lovely to get away for a couple of days with a friend - it's the first proper holiday I've had without my family, and I'm glad I managed to survive it, despite the blip on Tuesday! I'd love to go back down to Cornwall again at some point, perhaps for longer next time, to have more of a look round some of the different towns and beaches.

The main reason we had to come home on Wednesday was because I was due to have an operation on Thursday. I got up super early on Thursday morning and my Mum dropped me off on the Day Surgery Unit for 7.15am. She wasn't allowed to come on the ward with me, so she headed off home and my nurse helped me with my bag and showed me to my bed. I changed into a hospital gown and the anaesthetist and my named nurse came to chat to me about the operation. After that I have very little memory of what happened next. The next thing I knew, I was lying flat on my bed surrounded by doctors and nurses, with a cold compress on my head. I felt confused and floaty, but assumed I'd just nodded off and they were here to take me down to theatre. But then my nurse told me that I'd had a seizure and they were cancelling the operation. I didn't really understand what she was saying, and tried to talk to my consultant, who was telling me I needed to see my neurologist. 

A while later my Mum arrived, and I asked her why she was there. She told me I'd text her and asked her to come and get me, which I have absolutely no memory of doing! I was feeling a little less confused by then, so we asked to speak to my Urologist again. He confirmed that I'd had a tonic clonic seizure and that I would need to see my neurologist for some tests to try and find out what caused it. He made sure I was stable, and then advised my Mum to take me home to rest, as a seizure can take a lot out of you. I'd bitten my tongue during it, and also scratched my face, so I looked like I'd been in the wars! He said we need to wait for the neurologist to declare me safe before we can go ahead with the operation, which is frustrating. I'm also not allowed to drive, be left alone, have a bath or shower without someone being there or lock the bathroom door. It's a lot to get my head around, and I'm still feeling pretty wiped out, but I'm hoping I'll be able to see my neurologist soon and get some answers about what's going on. Until then, I'm having to rely on other people to ferry me to my various appointments, and am feeling pretty down about my loss of independence. 

Wednesday, 29 July 2015

I was on The Victoria Derbyshire show!

I thought I would share with you an exciting thing that happened to me this week. It's related to my health, but is also something more positive and I want to make sure I use this blog not only to document the difficult times, but also the good times as well.

I am a media volunteer with a charity called Beat who support people suffering from eating disorders. Being a media volunteer for both them and Mind has opened the door to some amazing opportunities for me, including appearing in Cosmopolitan magazine, in my local newspaper, on BBC Radio One Newsbeat, BBC One Breakfast TV and BBC Radio Berkshire with Anne Diamond. I've got a real bug for doing media work - it's not something I ever thought I would be confident enough to do, but I absolutely love it and find it helps me to cope with the difficulties of having mental health problems, because I feel I am able to use my experiences for something positive. I was contacted by The Victoria Derbyshire show a few months ago, when they were first thinking about doing some work around mental health problems. I told them I would be interested in helping them and they said they would contact me again when they knew more about what was going on.

A couple of weeks ago, I got a call on my mobile from a lady called Eleanor, from the show, to ask me if I would be interested in being on the show to talk about a massive issue surrounding eating disorder treatment - the fact that patients are regularly being told that their BMI is not low enough to access treatment. Considering this is a problem I have been faced with several times, I jumped at the chance to raise awareness in the hope that the people in charge of funding and writing guidelines might see the programme, and perhaps even reconsider how they approach eating disorder treatment.

Fast forward to this Monday and I was up and ready super early - I can't remember the last time I saw 6am! The BBC sent a car to pick my brother and I up (he accompanied me to help me with my wheelchair) at 7.15am, and we made the journey into central London. Traffic was pretty awful, so a journey that should have taken about 45 minutes actually ended up taking nearly 2 hours, but I dozed for most of it, so wasn't too worried! We arrived at BBC Broadcasting House just before 9am and, after signing in and getting our visitor passes, were met by a lovely lady from the show's team. It was surreal making our way to the green room and seeing all the news desks that appear on the main BBC News shows.

We were shown into the green room, which contained a table with drinks and biscuits on it and a few comfy sofas, as well as a TV on the wall so we could watch the start of the show. I was introduced to the other ladies who would be on the panel with me - Joss, a former eating disorder sufferer, Lorna, from the charity Beat and Rachel, a GP with an interest in nutrition. We were soon chatting away about the topic of eating disorders and the difficulties we have encountered with access to treatment. The lady from the show then came back and took us up to the gallery to meet the show's editor. It was pretty cool seeing the wall of TV screens and all the controls for broadcasting the show - I don't know how they keep track of it all! The editor had a brief chat with us about the format of the show and the kinds of things she wanted us to chat about. We then headed back to the green room, but before we had the chance to sit down we were whisked off to make-up. I hadn't expected to get my make-up done, which is why I had done my own before setting off, so the make-up artist just touched it up, added some eye shadows and lip colour. I've seriously never seen so many brushes, eye shadows and foundations! I felt a bit like a celebrity!

Before long we were escorted to the studio, where a technician gave each of us a microphone and attached it to our clothes. During a cutaway video, we were taken round to our seats ready for Victoria to come and chat to us. It was a little intimidating at first, being surrounded by big cameras and lights and seeing our faces on the big TV screens behind the cameras. But I soon forgot I was on television and got into the conversation with Victoria and the rest of the panel. It seemed to go so quickly, but I think we were actually on air for around 15 minutes. I talked about my experiences of trying to get help for my eating disorder when I first became ill at the age of 15, and the fact that I was denied treatment for 2 and a half years, which led me to taking a series of overdoses. I wish there had been more time to talk about the topic, as there was so much I would have liked to have said, but hopefully what we discussed was enough to bring the problem to the attention of the general public.

No sooner had we sat down it all seemed to be over, and we were taken back to the green room to collect our bags. I hopped back in my wheelchair and after saying our goodbyes, my brother and I made our way back to the car that was waiting for us. We of course managed to fit in a quick photo in front of the BBC, just to prove we were definitely there! The journey home was fairly uneventful and by the time we arrived home I was well and truly exhausted. But the exhaustion was totally worth it - I had a great time meeting the other ladies and feel so lucky to have experienced being on BBC television to talk about such an important topic. I just hope that it might go some way to making a difference to people who need to access treatment in the future.

If you'd like to watch the programme for yourself, you can find it here on iPlayer, but I'm afraid I'm not sure how long it will be available and it can only be watched in the UK as far as I know -

Tuesday, 21 July 2015

Sigmoidoscopy and another diagnosis

Hi guys,

I had planned to update this blog a little more often, but what my mind wants to do my body doesn't necessarily agree with! It's been a busy few weeks with hospital appointments and such, so I thought I would write a little update of what's been going on recently. Last Monday I received a phone call from my local hospital, asking me to come in the next day for a sigmoidoscopy - not much notice but thankfully I wasn't busy, so I agreed. I had an OGD and Colonoscopy back in 2012, and unfortunately it didn't go too well. I didn't respond well to the sedation that they used and during the Colonoscopy we think my bowel was pierced. Despite telling them I felt really unwell and was passing large amounts of blood, I was sent home. I think I must have lasted about half an hour at home before I started getting pins and needles in my hands and face, my lips were turning blue and I was losing a significant amount of blood. My Mum rang the department and was told to bring me straight back to A&E. I've never been seen so quickly! I was admitted straight away, put on morphine (which I then had an allergic reaction to), IV Fluids and was sent for an urgent CT scan. Nothing showed up on the scan, but because I was visibly losing blood I was kept in for observation, and ended up staying in for a week over all.

So after this experience I was obviously quite anxious about the prospect of having a similar procedure. When I was younger I was extremely squeamish and couldn't even watch TV programmes like Casualty. But since my health went downhill when I was 15 I made a complete U-Turn and since then I generally don't get phased by medical treatments/tests etc. But before my sigmoidoscopy I was the most anxious I've been in a long time, having flashbacks to the last procedure and going through the worst possible outcomes in my head.

My Dad drove me to the hospital last Tuesday and waited with me until I was seen by a nurse. I was visibly shaking, which she commented on, but to be honest she didn't do much to reassure me! My Dad had to go at this point, and I was taken through to a separate room where I was asked to change into a gown. Another nurse then came to see me and gave me an enema (they usually send you one in the post, but because of the late notice they had to do it on the day). Anyone that's had an enema will know that they're not the most pleasant of things, but needs must. A while after I was taken through to the procedure room and asked to lie on the bed. Although they don't routinely offer sedation for a sigmoidoscopy (it's similar to a Colonoscopy but doesn't look as far into the colon) they did ask me if I wanted gas and air (I did!) A nurse stood by my head through the whole thing and helped me breathe in the gas and air. The first few breaths I took didn't do anything, and I started to worry that it wouldn't help at all. But after a few more breaths I suddenly started to feel very strange - my hearing went muffled, I couldn't see properly, my head felt like it was spinning and I was unable to move or control my body at all. I was aware of the nurse asking me to open my eyes and putting a monitor on my finger, and could feel this intense pain in my abdomen, but the more I breathed in the gas and air, the more out of it I felt. It definitely wasn't a nice feeling at all, but it got me through the procedure.

I was moved to recovery where the effects of the gas and air gradually wore off and I started to feel more with it again. I was still in a lot of pain (they inflate your colon with air to make it easier to see) but was able to communicate again. After a while the doctor came round to see me. He told me the bowel prep (enema) hadn't worked, so he was unable to look around as much as he would have liked. This happened with my colonoscopy as well, and because we already suspected that I have motility problems it wasn't a surprise. From what he could see, he said there were no obvious problems, but he did say that there was stuff in my colon that looked like it had been there for months - not great obviously! For the rest of the evening I struggled with severe stomach cramping, but copious mugs of peppermint tea and a hot water bottle certainly helped.

Fast forward to this week, and more specifically yesterday (Monday). My mobile rang with a number I didn't recognise so I wasn't going to answer it, but for some reason decided to at the last minute. Good job I did - turns out it was my Professor that I see up in London for my digestive problems. When you hear someone like that introduce themselves on the phone, your mind starts racing through possible reasons they could be ringing you for. He told me that he'd received the results from the gastric emptying study I had back in June and they showed that the emptying of my stomach is severely delayed, meaning I have something called Gastropaeresis (paralysed stomach). I've already tried some medications for this problem already, but they've either made no difference or have made me more unwell, so he said he will need to have a think about our next steps. He wants me to come and see him in clinic - my next appointment isn't until October, so he's going to try and squeeze me in sooner, so we can discuss the diagnosis and what we can do to manage it. Gastopaeresis cannot be cured, but there are a range of options available to help manage the symptoms, which include medications, Botox, gastric pacemakers, feeding/venting tubes and surgery.

I'm not really sure how I feel about it all at the moment. Part of me is happy that we finally have an idea of what's going on. The other part of me feels sad/worried about my prognosis and what the future may hold. For now though, I'm just trying to concentrate on getting to this appointment up in London, so I can talk things over with the Professor and see where we go from here.

Friday, 3 July 2015

My spoonie story so far

As I’ve mentioned in a couple of my previous posts, May is Invisible Illness Awareness Month. An invisible illness is pretty self-explanatory and covers any illness that is not immediately obvious when looking at a person. More specifically, it covers conditions including M.E/CFS, Fibromyalgia, Connective Tissue Diseases, Epilepsy, Crohn’s, IBS and Chronic Pain. The list is massive, so the likelihood of you knowing someone with an invisible illness is huge. With this week being M.E Awareness Week, I thought I’d share my story with you, to try and raise awareness of how debilitating invisible illnesses can be.

My health has always been a bit wobbly, and even before I was born I was causing problems! My parents waited for nine years to have me – my Mum was very ill and the chances of her conceiving were pretty slim. But, along I came and despite complications throughout the pregnancy, I was born with no obvious problems. It was when the doctors were doing the usual newborn checks that they realised something wasn’t right – they found they could pull my legs right out of the hip joints. After having x-rays, I was fitted with a brace, which kept my hip joints in a locked position to allow the socket to develop further around the ball joint. I wore the brace constantly for about 8 months – according to my parents, bathing me was a nightmare because they weren’t allowed to remove the brace, so for the first 8 months of my life I could never have a proper bath. But, it seemed to do the trick and further x-rays showed that the joint was a lot more stable. I did have to be referred to a specialist when I started walking, because I didn’t seem to walk properly, but they decided it was nothing to worry about.

In this photo you can see the brace I had to wear - it kept my legs in that position

My childhood was generally pretty normal, although looking back now, I can identify elements of my illness, but at the time I just thought that everyone felt the way I was feeling. I experienced pain and clicking in my joints, and would often get times when I just felt exhausted and had to take a few days off school. I guess at the time we thought I’d just come down with a bit of a bug, and a few days off was enough to perk me back up again. I can also vividly remember some of my peers making fun of the way I walked. I had never taken much notice of it before (why would I?!) but once they had pointed it out to me, I could see that I was slightly different to them. Another problem I experienced on a regular basis were muscle sprains, strains and an occasional tear. I’ve lost track of the amount of times my parents had to take me to A&E with possible fractures in my arms and legs. One particularly bad injury happened while I was at school playing tennis in a P.E. lesson. I was barely exerting myself, but all of a sudden the pain in my foot shot through my body. After seeing various doctors, I was told I had torn part of a ligament in my foot, and it took weeks of careful physiotherapy before I could walk without pain.

Please excuse the awful fringe!

Despite these little setbacks though, I had a fairly typical childhood. I went to school as normal and took part in a whole range of extra-curricular activities, from ballet to Brownies. I wasn’t the type of child who could sit in front of the TV all day; I liked to keep busy. Something I will never forget is a party I organised in the Summer of 2003. I was 14 at the time, and about to start my GCSE’s at school. I felt happy – I had a lovely group of friends and was excited to be growing up and working towards my chosen career as a doctor.

I was 14 here - the summer before things went downhill

I started back at school in the September, and within a few weeks I knew that something wasn’t quite right. I was getting awful tummy aches and nausea regularly, my legs started to feel like two lumps of lead and my parents commented that I was going to bed a lot earlier. I was just finding everything exhausting. I started to struggle with my dancing – I would lose my balance and feel faint, and my stamina just seemed to disappear. Before this, I had always done well with dance, passing exams with flying colours and taking part in displays and shows. My dance teacher would often tell me that I was ‘too turned out’ (in retrospect, I can now see that I am quite bendy, which could be explained by a new diagnosis we are looking into, but more of that later), but most of the time I did really well. As the school term progressed, my grades started to slip. I went from getting A* across the board to failing practice exam papers with U grades. Understandably I was getting quite frustrated – my head felt like it was stuffed with cotton wool and I just couldn’t get anything to make sense. I managed to last until the Christmas holidays, when everything went downhill rather quickly.

To be honest I can’t remember a lot of what happened next; perhaps I’ve blocked it out because it was such a scary time. At first, we just thought I had the flu or a virus, but when the symptoms continued and became worse, we started to get worried. Over the next few months I underwent numerous hospital tests – hundreds of blood tests, x-rays, ultrasounds, MRI scans, barium meals and was prodded and poked by so many different doctors I forgot who was who, but test after test came back showing nothing. It probably sounds odd to someone who hasn’t been ill, but it got to the stage where I was desperate for a test to come back showing something was wrong. At least then I would know what was making me feel so ill. I can honestly say I was terrified. At 15, you expect to be worrying about boys and school, but instead I was anxious about the fact that my body was breaking and no one could explain why.

Eventually, after exhausting standard testing, my Dad asked my paediatrician whether M.E could be a possibility. I still remember the words she said: ‘Well, if you believe in that sort of thing.’ That was it. No support on how I could manage my symptoms, or even an explanation of what M.E was. We were sent home with nothing. Over the next few months my weight plummeted. Eating was a nightmare because everything I ate caused me pain or made me sick. By this time though, my paediatrician had decided a psychiatrist should assess me. I just want to clarify here – M.E is NOT a psychiatric illness, but unfortunately there are some medical professionals that don’t believe it to be physical. I am almost certain that this is where my eating disorder was triggered. Surely it is understandable for someone to struggle to eat when everything they do eat makes them ill. But trying to get my consultant to believe me was a complete non-starter. By this point I needed to use a wheelchair to leave the house because I was so weak and the pain was so intense. However, this was also used against me, and I was told I was putting it on for attention and that young people like me shouldn’t be relying on a wheelchair. How anyone can truly believe a child would fake such extreme symptoms for such a long period of time is beyond me. I hated using a wheelchair and didn’t want everyone looking at me when I managed to get out!

Using a wheelchair to get out of the house

The next couple of years seemed to blend into each other. I continued to be in a lot of pain, had no energy, was regularly sick and had constant sore throats. I tried to go to the odd lesson at school when I could, but I was assigned a home tutor to try and get me through a few of my GCSE’s. One big problem that I have personally encountered is that, as soon as my consultant got a whiff of a mental illness, she refused to treat me for a physical illness any more. As far as she was concerned, my symptoms were in my head and I didn’t deserve to have my symptoms investigated further. I will happily admit that I do have mental health problems, and I don’t think it’s anything I should be ashamed of. But I also want people to know that it is more than possible to have physical health problems alongside mental illness. Sadly, this is a problem I am still having to this day. A particularly heartbreaking effect of my illness was the isolation. I had gone from having a large group of friends and socialising every day, to rarely seeing anyone. I found that incredibly difficult to cope with. I don’t blame my old friends – I know they had their own lives to lead and they didn’t want to be held back by someone who wasn’t progressing as they should, but it didn’t make it any less difficult. Don’t get me wrong, I have a couple of amazing friends who have stuck by me through everything, and I am thankful that my illness has allowed me to find out who my real friends were. Somehow, I managed to get to my prom at the end of Year 11.

Somehow I made it to my Year 11 Prom

When all my friends went on to college, I went into a psychiatric hospital. It was the right place for me at the time because I was having a lot of problems with my mood and eating, but I do wish that I had had someone to support me physically. During the 8 months I spent in hospital, my physical health did improve a lot. I don’t know how or why (I wish I did!) but I thought that maybe it was just the right time for me. I still got incredibly tired and experienced pain and stomach issues, but it was manageable. I completed college, went off to Uni, came back again because it wasn’t right for me and got a part-time job while I studied with the Open University. For a few years things actually seemed to be OK. And I was happy with OK. I could live a relatively normal life if I paced myself carefully and started to believe that the worst was behind me. Unfortunately, it wasn’t.

The beginning of 2012 came, and there had been a few little things that had started to concern me a bit. I was still weighing myself regularly, to ensure I didn’t let my weight slip again, and over Christmas I had noticed that I’d lost a bit. It wasn’t a huge amount, but it worried me. I hadn’t been trying to lose weight and as far as I was aware, I had been eating pretty normally. I mentioned it to my Mum, and over the next few weeks I was very conscious that I tried to eat even more than I had been. But it didn’t seem to help. Very gradually my weight was slipping and I didn’t know why. I’d been feeling quite run down but plodding along with life, when one day at work I felt absolutely awful. Apparently the colour drained from my face, I couldn’t stop shaking and the telltale tummy pains had started to return. I was sent home and didn’t go back.

I had developed what I thought was a simple stomach bug, so spent a few days at home resting, believing I would bounce back again. But the ‘stomach bug’ continued. Everything I ate was going straight through me and the pain in my abdomen was excruciating. After a series of negative blood tests I was referred to a Gastroenterologist, who ran a couple more tests. She also specified that I needed to be referred for an urgent colonoscopy. This was in March. I didn’t get my colonoscopy until June and it turned out my notes had been lost, which meant I wasn’t on the system. Looking back we should have chased it up more, but at the time we trusted that the hospital were doing the right thing. I had an OGD followed by a colonoscopy, which showed I had erosive gastritis in my stomach and inflammation in my colon. An initial diagnosis of Crohn’s/Colitis was made and, despite the fact I was bleeding, I was sent home. I ended up back in hospital within the hour and spent a week there, trying to recover from the procedure. I had barely managed to eat that week and, on the day I was sent home, I couldn’t even drink water without needing to go to the bathroom.

Over the next month my health deteriorated considerably. Every day my Dad rang the hospital to try and speak to my consultant. And every time he was told his message would be passed on/she was busy/she was away on holiday. When my outpatient appointment eventually came round at the beginning of August, my Dad had to literally carry me in. I could actually see the concern in the consultant’s face, and she did apologise, saying she didn’t realise how poorly I had become. I was admitted the following day and fitted with an NG feeding tube. I can honestly say it was one of the most awful experiences of my life. My biopsy results had come back negative, meaning I didn’t have Crohn’s/Colitis, but they had no idea what I did have. To try and help me absorb nutrition, I was given a pre-digested liquid, which meant my stomach didn’t have to work to break food down. It took a long time, but gradually I started tolerating the feed and my symptoms eased. Unfortunately, this had triggered my eating disorder again, and, like last time, they refused to look into my physical health any more. The tube was removed after six weeks and I was promptly sectioned. I spent the next couple of months desperately trying to eat. My food had to be pureed because my stomach couldn’t cope, but, very gradually, I managed to build up to tolerating normal food.

I've been reluctant to share this photo, as very few people saw me at my worst. However, it is
extremely difficult to portray images of an invisible illness, and I think this helps to show
how debilitating it can be

In November 2012, I came out of hospital and began treatment for my eating disorder. My physical health wasn’t brilliant, I was very tired and still getting strange stomach symptoms, but, like before, it was becoming more manageable. In 2013 I got back to doing a few hours at work and tried to focus on maintaining a healthy weight. But I was still experiencing some worrying symptoms. I developed a strange marking on my right hand side, which was eventually diagnosed as livedo reticularis – a problem with the small blood vessels getting damaged, but there was no definite cause. The pain in my legs was still bad and I noticed how much I was struggling to climb stairs. My symptoms were always blamed on my eating disorder though. Even though I was a healthy weight, I couldn’t escape my symptoms being lumped together. Around this time I also received a new mental health diagnosis, Borderline Personality Disorder, and was referred for treatment for this. 

That changed somewhat in February of 2014, when my Mum had to rush me to A&E with severe stomach and back pain. After a CT scan I was told I had a mass on my right ovary and it needed removing immediately. They made it very clear that there was a strong chance of me losing my ovary. Despite this, I waited all day to be taken to theatre, before being told they had changed their mind. Another doctor decided that there wasn’t a mass after all, but that I have a deviated uterus. The pain continued and I began to be sick, which continued for a couple of days. They finally decided to do an exploratory laparoscopy, during which they removed my appendix.

For the next week or so, I did feel a lot better, and I tried to focus on building myself back up. But the pain started to come back, and we realised that something else was wrong. I was sent back and forth to the hospital more times than I can remember, and was continually told there was nothing wrong. It was only when a random ultrasound flagged up gallstones that the pain began to make sense. During this hospital visit I was also left holding my notes for a few minutes. I had a quick flick through and came across something that really surprised me. There was simply a date, back when I was still very little, and next to it were the words ‘Connective Tissue Disease.’ I questioned my Mum, who had no idea about it, so when I next saw my GP I mentioned it and she said she would do some digging.

In the mean time, my gallbladder was removed. I had hoped that would be the end to the pain and nausea, but unfortunately it wasn’t. The nausea got worse and I was still in considerable pain. After looking through my old notes, my GP decided I should go through some proper testing for a connective tissue disease because, apparently, my previous consultants were never happy with the M.E diagnosis. So I was referred to a rheumatologist at my local hospital, who did a full body examination and listened to my medical history. She quickly diagnosed me with Hypermobility Syndrome, which we found out was a name used interchangeably with Ehlers-Danlos Syndrome Hypermobility Type. Finally a diagnosis that actually made sense! 

Receiving this diagnosis, although difficult to accept at times, has definitely been one of the best things to happen to me in a long time. This probably sounds like a very odd thing to say - why would I be happy about being told I have a genetic illness, which is chronic and I am never going to get better from? But what has been good for me is the fact that I finally have some answers. Doctors now acknowledge that I have a physical illness and my symptoms are not all psychological. Soon after seeing the rheumatologist I was referred up to London to see a Professor who specialises in patients with EDS who also have complex digestive problems. He confirmed that I do have Ehlers-Danlos Syndrome and is now putting me through various tests to try and work out exactly what is going wrong with my digestive problems. It's a long process, but finally something is being done.

Since receiving my EDS diagnosis I have also been referred to a number of other specialists to help with more specific symptoms. I see a Cardiologist, who diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS) after a Tilt Table Test, a Urology team who have taught me to self-catheterise, inserted an indwelling catheter when self-catheterising stopped working and are doing investigative surgery to look for answers, a Neurologist who is looking into my neurological symptoms, a Pain Management Team and Orthopaedics to look into my sublaxing joints to see if I would be suitable for surgery. 

Trying to venture out for a little trip in my wheelchair

I'm sorry that this is so long - it's a bit overwhelming to look back at everything that has happened, but I also think it's good because I can see how much I have fought through and where I am today. Life certainly hasn't been easy, and I doubt it ever will be, but I am finally starting to feel like I am beginning to understand my body a bit more, and although I can't change my illness I am hoping that, with the help of the specialists I am under, I will be able to manage my symptoms a bit better. 

Do you have any experience of an invisible illness? I would love to hear your thoughts, experiences and questions