A very long awaited update – having major surgery soon.

I’ve been meaning to write this for quite some time, I’m really not very good at keeping up with this whole posting frequently thing anymore it seems – but was I ever?! To say a lot has happened since I was in hospital under my GI doctor in June is an understatement, and a very long story.¬†From discharge on the nutritional drinks I continued to go downhill, loosing weight rapidly symptoms just worsening and not able to tolerate more than 800 calories of the drinks a day, and the amount I could tolerate of them was continually decreasing. Bed bound and needing a wheelchair for a combination of reasons in order to leave the house, which was generally only for doctors appointments. Constant abdominal pain, nausea and many other different unexplained pains and symptoms. By August I had lost 20kg since the beginning of April and was very underweight. However, in August I also found out what was wrong…

I have a couple of very rare vascular compression syndromes:
– Superior Mesenteric Artery Syndrome (SMAS), to simplify this is where the 3rd part of the duodenum (first part of the intestine) is compressed in-between the Superior Mesenteric Artery and the Abdominal Aorta. Which makes eating incredibly problematic as there is not much space for anything to get through your duodenum from your stomach.
– Nutcracker Syndrome – yes this is a real thing and yes this is actually its name. Nutcracker Syndrome is where your left renal vein is compressed in-between your SMA and Aorta. For me this has also caused Pelvic Congestion Syndrome due to the blood flow issues with having a compressed left renal vein. Both of these conditions cause me a significant amount of pain and problems too.

By September I just couldn’t keep going as I hadn’t been able to sustain myself nutritionally on the elemental drinks, I was continually losing weight and was down to only being able to do about 200-300 calories a day of them. I was admitted to hosptial under my GI again for him to try and stabilise me. I ended up having to have a nasojejunal tube feed put in, which actually ended up being a completely horrific experience of placing the tube. I ended up having to have it done in radiology rather than endoscopy which meant I was unable to have any sedation. It unfortunately was not a simple or quick procedure due to my compressed duodenum, it was incredibly painful and long, involving a lot of crying, my whole body shaking and passing out at the end. I was on the NJ tube for a week however I was not able to tolerate it, whilst feeding it caused me a significant increase of pain that was not bearable, and it was causing me a lot of tachycardia when on the feed too. I ended up having to be taken off and the only option was to put me on Total Parenteral Nutrition (TPN). TPN is IV nutrition which goes in through a central line (I have a PICC line), it completely bypasses the GI system, providing you with nutrition straight into your blood stream, the end of the catheter sits just outside the heart in the Superior Vena Cava. The fact that it means no nutrition is entering my GI system gives me relief from the increased amount of pain and symptoms I have when I have anything going in there.

We did some tests to confirm my diagnosis with another scan in order to send it to an experienced vascular surgeon. I met with the surgeon and really liked him, he was easy to talk to, understanding, I liked what he proposed and he had a sense of humour! He wanted me to have an angiogram and a venogram to assess things a bit further before discussing next steps. Not a pleasant test to have done, especially when you end up being able to feel the entire venogram happening inside of your abdomen – very painful and uncomfortable! Not to mention having to lie completely flat and still for 5 hours afterwards which is not Ehlers Danlos Syndrome friendly in the slightest, my unhappy and unstable joints were screaming at me in pain for the entire 5 hours begging me to move them.
The scan showed it all clearly and we went ahead with planning surgery to fix the SMAS and Nutcracker.

I’ve now been in hospital for the past 10 weeks on TPN waiting for surgery. Have had several complications including sepsis, and ongoing very abnormal haematology blood counts and liver enzymes through the roof. The last two being unrelated to the sepsis, and deemed incredibly odd to have happened for several different reasons. I had the lipids in the TPN reduced and switched to the old type as my liver enzymes at one stage went up to 37x the normal value. My haematology blood counts I ended up with thrombocytopenia and low WBC, RBC and Haemoglobin. Though platelets being the worst and were dropping each day, there is still no clear explanation for this, but it most likely is due to the TPN for some strange reason.

We have had to try and re-stabilise my PoTS prior to surgery to make sure I am safe enough for it with the anaesthetic and also post op. My PoTS has been getting progressively worse pretty much since I came off the medications that kept it stable, which was about a year and a half ago. Initially after coming off it wasn’t too hard to cope with, but things just started getting worse and worse to become in a really awful state. I’m back on two medications, which I was on previously, however they are not effective enough and I’ve got some very strange things going on with it all too, my PoTS professor did want me to get checked over by cardiology prior to surgery as well.
I have also had some incredibly weird things going on with my headache too, but don’t know what is going on with that and hopefully we can figure that out more once I have recovered from surgery for the compression syndromes.

Surgery is imminent, I am having two procedures in one operation. Vascular surgery to transpose my left renal vein and gastrojejunostomy for the SMAS to bypass the compressed section of the duodenum. Having surgery will hopefully allow me to eat again and relieve me of all the pain and symptoms that both these conditions cause. I have two very experienced surgeons and an incredibly supportive GI doctor and I feel completely comfortable with the plan. Just keeping my fingers crossed that it all goes smoothly and that I will be able to sustain myself nutritionally in order to go home, as I need to get off of TPN in order to go home from here. So fingers crossed I will be able to and will be home for Christmas!

It’s been a very long hospital stay, however I actually can’t believe it’s been 10 weeks. I’ve been incredibly lucky to not only be under some amazing doctors but to also have been looked after by the most incredible and lovely nurses I have ever met and I don’t think I will ever meet any as great as them all again! And despite pain and feeling really unwell, distraction in the form of incredible nurses to chat to, laugh and joke with has truly been the best medicine. I have managed to maintain being completely mentally stable, upbeat and positive – and I am very proud of myself for that.

Will write more about everything and my recent experiences once I’m able to after surgery.

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What have I been up to?

So this weekend I did something that has rather excited and inspired me. It had been booked for a while and I was looking forward to it. I went to Bristol (about 2 hours away from where I live in the UK) to the TAGB academy which is the Tae Kwon-Do association I am part of headquarters, for part 1 of my instructors qualification. It was a 2 day course from 9-5 each day, so a very long day a long with getting there each day also. However it was a fantastic weekend and I thoroughly enjoyed the course and left after day one feeling very inspired and excited about my future within Tae Kwon-Do. The course content was very interesting and we did some practical on Sunday as well, overall I learnt a lot and had a really great time. The pain was mostly okay whilst I was on the course however once I got home on Saturday night it was bad, but was a bit better by the morning for day 2, but bad again once I got home Sunday night. Though to be honest I didn’t really mind that the pain got bad because I had such a good time on the course that the extra pain was worth it.

I am now a qualified assistant instructor and am looking forward to hopefully taking part 2 in November to become a fully qualified instructor and able to open up my own Tae Kwon-Do school/club. I have to be invited back to take part 2 though, which involved me producing what is almost like a Tae Kwon-Do dissertation/business plan and sending that completed by October, so hopefully I will get onto part 2. At part 2 there is a written exam and a practical exam which I need to pass, but that shouldn’t be a problem. I have been teaching Tae Kwon-Do for years, I have quite a lot of experience teaching, I did a lot of teaching in Dubai on my own and do a heck of a lot at my club here, often entrusted to take full lessons on my own. I actually took last nights senior session on my own as my instructor was away, and everyone commented that it was a really good session, so I was very pleased with that.

I have a lot of hopes for my future within Tae Kwon-Do, should be taking my 2nd Dan grading in October, and hopefully part 2 of instructors in November. I also am hoping to maybe set up my own Tae Kwon-Do school if I pass part 2, so that could be in the works. I feel very inspired to do so after this weekend. Tae Kwon-Do training and teaching is a huge passion of mine, which you could probably guess. So to open my own school would be amazing and I feel very excited at all the prospects of becoming a qualified instructor.

Aside from Tae Kwon-Do, I have officially told college that I will not be returning next year, I went to see my course tutor yesterday and told her. She was understanding and said it was a shame they were losing me because I have been a very good student despite everything, however she said she knew how hard it had been for me. I felt a bit sad about it all again afterwards, it is frustrating because I know I am clever however education is not right for me and my condition at the minute. Going to focus on pain management and Tae Kwon-Do training for my 2nd Dan, have also applied for a couple of part time jobs. So will see what happens with that, if nothing comes of it I will probably just do some volunteering for a while. I need to do something, doing nothing but focusing on pain management will not be beneficial, I need to have some sort of purpose in life, something to get up for and somewhere to go.

Two years ago.

Two years ago tomorrow I came back to England from Dubai. I was incredibly suicidal and yet again it wasn’t safe for me to be in Dubai where mental health care is lacking and suicide is illegal. Having only just got away with it in September 2012 when I overdosed and ended up in intensive care. I didn’t want to come back to England, actually I loathed the idea. I wasn’t expecting to stay longer than a few weeks, so when I was told by the mental health people I started seeing here that it would take way longer than that, I was distraught. Dubai was my home and I hated England.
The mental health team were useless anyway and didn’t help so eventually I got rid of them and found a private psychologist who specialised in treating people with chronic pain. I hit the jackpot and she was/is great. She has helped me immensely with being accepting of my condition and learning to live a good and happy life despite pain. Taking every day as it comes, and incorporating mindfulness and pain management techniques into my life, which help a lot.

I never thought any of this would be possible for me, for me to be in pain but to be okay, to be happy. It is highly likely I will be in pain for the rest of my life, but that’s okay because I can cope, I can be happy and I can live a full life despite chronic pain. I still have bad days, bad pain days, flare ups which last weeks/months, days where I’m in a bad mood because of it. But that comes with the territory of chronic pain and not every day is bad.

After dropping out of school back in September 2012 after my overdose I never thought I would be back in education ever again. But I am, I’m at college and I’m doing well at college and hope to go to university after I finish my course in a years time.

I’ve come so far over the past two years, there has been many ups and downs and it has been an incredibly hard journey over the past five years since I got sick to get to this place. However I hope that maybe I am a better person for it. For what I’ve achieved and how far I’ve come.

None of this would have been possible for me if I hadn’t moved back, if I didn’t have the support from the people I do, my family, my school counsellor and my psychologist who support me every step of the way. In order to move back we had to split my family up, my mum lives in England with me and my Dad and sister in Dubai, it’s been hard on my parents and it’s been hard on my sister not having my mum there with her all the time. I feel bad about it but I can’t appreciate what they have done for me enough. I would never have got to this place without moving back and I can’t thank them all enough.

I am the never ending headache, but I have accepted that.
I may always be the never ending headache, but I can live my life as best as possible despite it.
I can have NDPH and be okay, I know that now.

A big achievement.

After the horribly stressful week I had last week, this week has been good.

Firstly I went into college on Tuesday for psychology and my teacher said she was going to hand back our first graded assignment which gives us credits to be able to get into university on, this assignment was a research plan. However she said that not everyone had passed it, me being me who has absolutely zero confidence in my own abilities sat there convinced I had failed. She handed them back and to my absolute surprise I got a distinction (the highest mark you can get), I went into a slight state of shock because I just couldn’t believe it. I texted my Mum and she said that I underestimated myself which is clearly true. After the lesson I then went to my skills development appointment and the woman I see said she thinks I’m a bit too clever for my course which was also a shock because most of the time I feel very dumb and like my brain doesn’t work properly, and I am not entirely sure I believe her on that one. However I seem to keep being proven wrong about that clearly.
Showed my law teacher on Wednesday what I had done so far of my assignment and he said that so far it was good and well written and gave me some tips on how to improve it to hopefully get a distinction.

It has kind of given me a bit of confidence in myself which is good because I have literally zero of that, and it has also given me a bit of confidence in psychology because I worrying I wouldn’t be any good at it at university. I’m proud of myself for getting a distinction, I really wasn’t expecting it but I’m thrilled about it. For me it is such a huge achievement considering how I was this time last year and how I thought I was doomed to stay the rest of my life in bed miserable and in pain living off my parents. I can do this and I can achieve things despite pain!

My sister also arrived yesterday which has been really nice, I haven’t laughed so much since the last time she was here, she is really quite hilarious. I have now got a week off college for half term though I’ve got a fair bit of work to do. I’m off to Dubai on Tuesday for 4 full days. Haven’t got much planned other than seeing one of my favourite people on Thursday. My Dad also got some free corporate tickets to the Dubai races and asked me to go with him on Thursday night so that should also be good. Am looking forward to going there for a few days it will be a nice break.

Small achievements.

Today I combated some of my stress and actually had a pretty okay day. I have been feeling incredibly stressed over the past week, everything was getting on top of me and I had no clue how to de-stress and do everything I needed to do.

Yesterday I went into college firstly to attempt to do some work in the inspiration room and secondly for an appointment with my law teacher to discuss my assignment. I sat in the inspiration room for 3 hours staring at my laptop getting more and more stressed by the minute. After almost 3 hours I went to the nurse so I could inject my lunchtime medication and told her how stressed I was, so she let me lie down in the nurses room for half an hour before my appointment with my law teacher. I did some mindfulness whilst I was lying down but was still feeling incredibly stressed, anxious and on edge. I then went to see my law teacher and without me even having to tell him I was stressed he asked me if I was stressed and/or anxious, he could clearly tell. I told him both and that I hadn’t decided on a topic for my assignment that everything was getting too much and I don’t know what to do and how to handle everything. So he said he would decide on an area for me to do my assignment so that I didn’t have to make the decision myself which was clearly causing me a lot of stress and anxiety. He then went through possible research questions for the topic and what I needed to include. The appointment with him was incredibly helpful, and we talked about some of my issues with pain and depression. I left the appointment feeling like a bit of the weight on my shoulders had been lifted because I now had an area to focus on for my assignment, though still stressed about actually writing the assignment itself. My law teacher said he wants to see as much as I can get done by Wednesday in the lesson, which is good because I work well to deadlines.

Today I woke up from a not very good nights sleep, but decided to take a trip out to town for some coffee and breakfast, I took my iPad with me and some notes for my assignment. Sat down in the coffee shop put my headphones in and listened to some Taylor Swift (a personal favourite of mine) to block out the noise of everyone around me. I then set to work on typing some notes for my research project plan and got a fair bit done before I decided to go home. It was a nice morning and I really enjoyed some time by myself listening to some music and doing something productive.
After getting home I saw down with my laptop and all my notes and set to work on properly typing up my research plan and also my research project. Each has to be 1000 words, and I actually got loads done, had quite a few breaks because I need to pace myself, but I managed to complete 500 words of the plan and 800 words of the project.

I’m really pleased and proud of myself for actually getting a lot of the assignments done despite how stressed I am feeling. So that is quite an achievement for me, all be it only something small. Today was quite a good day and the pain isn’t too horrible, did lots of mindfulness as well throughout the day which was good.
I have work and Tae Kwon-Do training tomorrow, so I probably won’t do any more of it tomorrow, but Monday I hope to do some more and have it nearly completed by Wednesdays lesson where my law teacher can look at it and give me some feedback.

3rd place in 40th Anniversary South West of England Tae Kwon-Do Championships!

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Yesterday I competed in the 40th Anniversary South West of England Tae Kwon-Do Championships. It was a great day spent with quite a few people from my club and hundreds of people from the South West of England who were competing. Supporting everyone and competing was a fantastic experience to be part of!

I competed first in patterns, where I got a respectable score, though not good enough to place. However I was pleased with my score and that I didn’t make any mistakes on my pattern despite being very nervous. I then did a team event with my instructor and two others from my club, unfortunately we didn’t win, but it was great to be part of the team.
Then it was my individual sparring event, and I am pleased to announce that I came 3rd!!! Though I did take a cracking kick to the eye in my last fight, was a bit shaken up but pulled myself together and continued with the fight and held my own. However unfortunately the girl I was fighting was incredibly good, a lot better than me and she won. Though I still took 3rd place and was over the moon.

I went to this competition not expecting to place in anything, so I was very surprised and happy to have taken away 3rd place, even have a nice shiny bronze medal to show for it, as you can see from the photo! To me it was just an achievement to enter a competition despite chronic pain and illness, so to come away with 3rd place is beyond amazing to me.

However due to the kick to my eye I am now in a lot of pain. My eye obviously hurts a lot and is bruised and swollen now and it seems to have made an impact on my headache which is now raging. But you know what, it was worth it!

Safe to say I’m a little bit excited.

Tomorrow I am competing in the 40th anniversary South West of England Tae Kwon-Do Championships and I’m quite excited about it. I’ve been a black belt since 2007 but the last time I competed in a competition was about a year before I got my black belt, so quite a long time ago now. I usually officiate at competitions now as I’m required to officiate at several a year in order to qualify to grade for my next Dan this coming October. However I thought that I would put myself out there and have a go at competing at black belt level, which isn’t easy to say the least. The competition is tough because there is such a high standard at black belt especially with me now being in the adult range. Though I am in the lightweight division so will be up against people of a similar weight and size to me. I’m not expecting to place, though that would be a welcomed surprise. I like to think I’m quite good at Tae Kwon-Do, actually it’s probably the only thing I’m good at, so I’m just going to try my best and see how far I get. I’m competing in 3 different aspects of Tae Kwon-Do, patterns; which is like a set sequence of moves and there is a pattern for each coloured belt and 3 black belt patterns for my Dan grade. I’m going to be doing one of my black belt patterns which has 44 movements, so hopefully I won’t mess it up! Then I’m competing in Sparring; which is the fighting element of Tae Kwon-Do, so I will be up against black belt women under 55kg, hopefully I won’t get too beaten up. Also competing in a Tag team sparring event with my instructor and his son who is also a black belt, so looking forward to that as well.

From my club there are about 20 of us going, about half competing and half are black belts who are officiating. The competition is held about 2 hours away from us, so have to leave pretty early in the morning to get there before 9am, and then it is likely that it won’t finish till the evening, so it’s a long day. However I’m looking forward to the experience, competing and supporting the people from my club.

Hoping for a relatively good pain day tomorrow, been preparing for the competition by having lots of rest, self care, sleep and of course training hard. I’m excited for tomorrow, and whatever the outcome I will be pleased and proud of myself just for taking part despite chronic pain and illness.