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

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