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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It’s been a while, yet again.

I haven’t posted in a while, for a number of reasons, I had been doing okay and I decided I needed to take a break from blogging and focus on solely being okay. I did have a boyfriend but that ended unfortunately, I had, well have a job but the pain has been difficult. So much so that I have recently had to take quite a while off to try and recover from the horrific pain levels that it gives me. So is safe to say that it hasn’t been going great. Going to work with horrific pain levels is just awful, I sit at my desk feeling like my head is about to cave in, that my brain is being crushed or I am being stabbed in the head, and I just want the world swallow me up whole.

On a positive yet scary note I’m getting surgery soon, I don’t have a date yet but I have a psych evaluation and an appointment with the neurosurgeon next week and beyond that it will only be a matter of weeks till my surgery date; this is the ONS surgery I’ve been waiting 3 years for. I hope with all my heart that it works, it’s not a cure but it could be the next best thing. Obviously I am quite scared it won’t help and give me the relief it is meant to and that is playing on my mind a bit. I am scared of it working and what I will do my life if I am in less pain, and I am scared of it not working and me finding I can’t really do the job path I am currently in with this level of pain, which is proving to be quite difficult at the minute. What will I do then?

I’ve been quite lonely recently, it’s hard when you don’t really have any friends to talk to. Going through life with no friends is really quite difficult, I don’t know what I do wrong I don’t know why I find it so hard. But having no one is beyond horrible all I just want is one person to stick by me that’s my age and wants to be my friend. But there isn’t anyone and it tears me up inside and makes me feel like I’m just not worth being friends with, that no one likes me enough to stick by me, that maybe I’m just a horrible person. I just don’t have anyone, of course I have my family but that is really not the same. Is it too much to ask for to just have someone?!

I don’t want to give a time frame of when I will post next because that might not be the case, and I am sorry if I haven’t replied to comments or emails recently as I just haven’t checked them.I hope to post again soon and keep you updated with the surgery process.

So for now I will say bye, I hope to write again soon and I wish you all a low pain day.

 

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.

Sometimes all it takes is a decision.

Shortly after the onset of my headache depression hit me hard, and I continued to suffer from severe depression for years. I couldn’t cope with the pain and the way it made me feel all the time; miserable, angry, bitter, lost, pretty much every negative feeling out there I was feeling it at full force. For a long time I coped with my pain through self-harm, it was my coping mechanism, however not a good one. After a while I just didn’t want to live anymore, I saw no future for myself but pain and misery, I didn’t think there was any other way, so I tried to kill myself and got close to succeeding.

It’s only been in the past year that ¬†have discovered that there is another way, happiness can be found despite pain, my life can have meaning, I can achieve things and more importantly I can live despite pain and be okay with it. The path wasn’t easy, it had many bumps in the road and still does, but I believe the first step is making the decision you want to feel better. Because before I don’t think I really wanted to get better emotionally, it was easier to let the depression consume me but I didn’t know there was a way out.

The most successful therapy I’ve had has been ACT, Acceptance and Commitment Therapy, geared towards pain management of the natural kind; no medications. It was a hard road and in the beginning it all sounded like nonsense, I thought it was stupid and impossible that anyone could accept their chronic pain, be okay despite pain and live a happy and full life despite pain. Eventually it was like a switch in my head had turned and I understood it and wanted to work towards accepting my pain and feeling better. That was the turning point for me, and I worked my ass off to get there. I will admit to falling off the wagon briefly, however that is because I decided to take on the world and had stopped all my pain management techniques. I eventually got back there though, all be it I needed a bit of help along the way.
Now feeling pretty okay again the majority of the time, have bad days now and again, the majority of which revolve around the pain being bad.

I may never recover from chronic pain, I will probably always have a headache, but that’s okay because I can cope, I can still achieve things and more importantly I can be happy despite pain.
Some days are bad, but most are good despite pain.

If you’re reading this and you suffer from chronic pain and you think I’m completely crazy and what I’m saying doesn’t sound possible. I want you to know that that’s okay, because I use to think it was crazy and impossible too. But I do want you to know that it’s not, it is possible, it is achievable, and I hope one day you may get to this place too, but I am always here for you whenever, through the good, the bad and the ugly.
Contact me on: iamtheneverendingheadache@gmail.com

Hope.

Hope is a hard thing to hold on to, especially if you have chronic pain/illness. It’s hard to hope for better times when you are in so much pain which never ends. You feel hopeless, you can’t picture what it would be like to not be in pain anymore and you can’t picture a future without pain. And that in itself is hard, you struggle to see the point in living when all your life seems to consist of is more pain and misery because of the pain, so you start thinking that what is the point in going on.

You try treatment after treatment to try and ease your pain, each treatment comes with the hope that maybe it will help, but then it doesn’t and you are left feeling even more disappointed and hopeless. You try not to hope too much that a treatment will help because you don’t want to be left feeling disappointed, but there is always the possibility when trying something new that it could help, so you really can’t win.

I have spent a long time feeling hopeless, feeling miserable because I will probably always be in pain and feeling like I don’t want to live if I’m always going to be in pain. But there is a life with chronic pain that can still be a good one, yes you may always be in pain and yes that sucks and is horrible but I’ve realised that I can still try to live a good life despite pain. I have come to accept the fact that I will probably be in pain for the rest of my life, even if I get surgery it won’t get rid of the pain completely. And you know what, I’m starting to feel okay with that, yes it’s not the ideal life living with pain, and there are times still when I’m in so much pain I still want to die at that point in time, but that blows over when the pain slightly eases. But I have a lot more hope now, I feel like I actually have a future and that I can still live a good life even with pain.

If you are struggling with chronic pain and the depression that often comes with it, I want you to know that it is possible to live despite pain. If you are doubting that I want you to know that I never thought it was possible either and it’s been a long road to get where I am now, but I feel better emotionally than I have in years and more like myself than I have in years. I now have hope for the future instead of feeling hopeless all the time.