I’m kinda’ just another fan on the internet but I wanted to write something directly to you. This is pretty much just to let you know that you’re not alone in what you’re going through right now. I’m sure that you already feel so much support from your fans and the community, however the reason for me posting this is because I share a very similar experience. Maybe in writing this down I can also feel like I’m not the only one feeling this way.
Over a year ago me and my ex-fiancé sat and watched the very first video on ITLD and it caught our interest. As we watched more and more of yours and Martyn’s videos we realised that the reason we enjoyed them so much is because it was like watching parts of our own relationship over. We both share some traits of both you and Martyn and since we’d already done the things you were vlogging about in those videos it was extremely nostalgic and heartwarming to watch you both experience those things too. As time went on I realised that I personally could relate a hell of a lot to your experiences. I don’t have a chronic illness, I have however had to deal with not being able to work for other reasons, I lost a lot of my own independence in the past few years and felt like I was losing my ‘true self’, there’s probably a long, long list of the life experiences we share based on what I know about you in your ‘Draw My Life’ video and the things you’ve spoken about in your vlogs, which is one of the many reasons I enjoyed your youtube videos so much.
A few months ago me and my fiancé realised that we’d spent a lot of time living as friends and in realising that we decided to break up. Hearing the news of you and Martyn today going through that exact same thing was like remembering my own break up all over again. I know how much sadness you both must be feeling right now, your heart literally aches in your chest because there’s no anger there to feel towards the other person. There’s love, but not the kind of love other people expect from you and I know all break-ups hit hard, but when there’s no dislike or resent for each other it puts your mindset in a whole other place entirely. It sort of feels like you’re doing the wrong thing even though another part of you is telling you that it’s for the best. I felt that too and I hope you remember that it’s okay to cry, to hold each other, to rely on each other for support. You’re not holding on by doing that, you’re making sure you don’t get crushed under the weight of the world and how different it is apart. No matter what people say its never “easier” to break ties completely, or shrug each other off. Mine & my ex-fiancé’s friendship is unbreakable and as much as family and friends tell me that friendship won’t last, that “you can’t be friends with exes”, I’ll be damned if I don’t give 110% into making it work. You won’t always cry at the thought of it 'not being as it were’. You’ll learn to love and respect each other in a way where you’re both happy. It’s so incredibly sad and three months later I’m not healed, but I will heal, and you will too. At the end of it all we both seem to have somebody who will carry us through anything life throws at us, despite what happens between you both. Not many people get to have a relationship with a best friend and come out the other side with that friendship still intact and as much as society says it would never work I’m pretty certain we can break that mold.
In summary I just want you to know that you’re not alone in the way you feel right now. It will feel like everything is coming crashing down all at once, just remember, “You can do anything, but not everything."
And finally, thank you for giving so many people an insight into your life, for being so very real and honest in your experiences and never hiding away from your fan base. I’m sure that you’ve made so many others feel like their “best friend I never had” and they related to you just like I did. I really do wish both you and Martyn all the luck in the world.
February 2012 Bartholins cyst removed, surgery failed causing blood loss. Second surgery performed and second cyst was discovered.
September 2013 Viral Meningitis, which took 4 A&E hospital visits to diagnose.
January 2014 referred to specialist for ME & Fibromyalgia.
June 2014 Diagnosed with ME & Fibromyalgia.
Details of the past FOUR weeks events:
On Wednesday the 1st of October i called the NHS direct line on 111. I explained that i had a severe stabbing pain in my lower right abdomen and that the pain has been ongoing for a week or so but suddenly got worse on this day so felt i needed to see someone.
I was told to go to Knowle West Health Park to see an on call Dr at 1:15am. If it wasn’t serious i would of personally declined this advice and would of tried to get an urgent GP appointment the next day but i knew something wasn’t right. The Dr i saw said i needed to go to A&E and i was driven directly there by one of the reception staff in a Dr’s car. Upon arriving at A&E (Hospital withheld for privacy) i was taken almost instantly to a surgical assessment ward and was told i would be staying the night.
On Thursday i was seen by a surgical consultant (name withheld for privacy) who said i would need blood tests, an ultra sound and a ct scan. My ultra sound was done around 9am on Thursday morning. Later that day i was told everything was clear on the ultra sound. My blood results came back fine however, there was blood in my urine.
I had the CT scan on Friday the 3rd of october. Later that day the consultant came and said he had a quick look at the scan and that everything seemed fine but the full report hadn’t come back yet so no certain conclusions could be made. He said he wanted to keep me in till Monday and if my bloods were still fine and the ct scan report was all clear i would be free to go home.
Saturday a different on call Dr came to see me and said i had a cluster of Ovarian cysts shown on the full ct scan report and i would need a transvaginal ultra sound. Because they do not do these scans over the weekend i would be put on a list to have this done first thing Monday.
Monday morning around 4am i was told i am being moved to the head, neck and thoracic surgery ward. The porter did not come and collect me until 6am so i was waiting for two hours to me moved after being woken up in the middle of the night after taking sleeping medication for my ME.
At around 10am i was been by a new surgical consultant who said he thought i had constipation and that ovarian cysts wouldn’t cause the pain (despite a previous Dr stating that the pain would make sense if i had a cluster of cysts) but i was to still wait for the ultra sound.
On Monday i was not taken to have my ultra sound and i was not seen by a Dr again that day. At 10pm i was told i was being moved to a ward that specialises in upper and lower gastro-intestinal surgery. This again was after i had taken my sleeping medication. I had not seen another Dr i was just being moved.
My boyfriend called the head nurse and explained they cannot move me multiple times in one day during early hours and the evening as i was on my medication which they knew about. They agreed and decided it was best for me to stay on this ward for the night but i was told i would be moving ward in the morning.
On Tuesday the 7th of October i was seen by the same surgeon consultant as Monday and was told that i was being sent home because there is nothing for him to operate on. I complete shocked asked about my ovarian cysts and he said that was not the case any more and there was no diagnosis for my pain. My ultra sound had been cancelled and i was being discharged that day! The Surgeon said this must be a Fibromyalgia flare despite the fact i had already given them a letter from my Pain Clinic stating this was not a symptom of my pre existing conditions.
After this i contacted the nurses on my current ward and explained i was not happy going home with the lingering thought of having ovarian cysts and i had two very conflicting diagnosis that i wanted to be certain nothing was wrong.
Following this i was seen my a female Dr who was on my original consultants team (name withheld for privacy) she explained that the diagnosis of Ovarian cysts was incorrect and should not have been told to me (no apology for the fact i was left thinking i had cysts for three days). The ultra sound was cancelled by a radiologist who looked at my original ultra sound and ct scan and confirmed that i do not have ovarian cysts. She then apologised for the miss information and communication to me and has confirmed that the ultra sounds and ct scan show nothing of concern.
After 6 days in hospital, 3 doctors, 2 wards (nearly 3) and 3 different diagnoses (one of them severely incorrect and very distressing) i was discharged. Thankfully i did not have a cluster of ovarian cysts but sitting here with that knowledge for 3 days without contact from a Dr was extremely emotionally exhausting and traumatising. I feel like this was a massive medical misconduct and a diagnosis should not have been given by an on call Dr who did not know what he was talking about.
After two days of trying to cope with the pain I was re admitted to hospital on the Thursday (9th October) and despite having discharge letters & confirmation from my GP saying I need to be in hospital I was still made to wait in A&E for multiple hours with no pain relief before i could see anyone.
Whilst waiting in A&E a nurse took the wheelchair i was sat in off me to give to another (older) patient even though I was unable to walk myself. The nurse stated they were for patients needing to move only.. yet there were multiple patients in wheelchairs in the waiting area.. and I was having to hobble back and forth from the toilet and the assessment rooms because they wanted urine samples etc.
When i finally saw a Dr my Medical notes were not accurate from my previous stay of 6 days & there were no details regarding the blood in my urine. They tested the sample i just gave them and there was a significant amount of Protein and Blood in my urine. This means that the blood was consistently in my urine for over a week (could have been longer).
I was put on the Surgical Assessment ward i was on previously for just one night and then i was moved to a short stay surgical ward. This ward had around 12-15 patients on it. I wasn’t introduced to any of the nurses (like i had been previously on other wards) and i rarely had my observations done. My requests for more pain relief was often forgotten about and would be up to 30 minutes before someone would help me.
I had bloods taken in the morning (Friday 10th) after seeing the consultant.. (she stated my last bloods indicated something wrong with my liver so they wanted new bloods to see if I should have another ultra sound) my bloods were then left to coagulate at the nurse desk and were never taken to the lab until a nurse discovered they had been forgotten about.. This was several hours later at 7pm. So a day of testing and possible treatment had been wasted.
More bloods were taken on Saturday and Sunday both indicated a high amount of Liver Enzymes in my blood and I was informed my ultra sound would be done on Monday.
I was woken up in the middle of the night (1:30 am on Sunday 12th) to be given and urgent cannula so I could have IV fluids. I was struggling to urinate (because of the pain) and they said that dehydration was causing this so more fluids would fix that. Spoiler: It didn’t!
On Monday morning a new Dr I have never seen before said that he thinks my scan is going to come back with no results (despite my consultant saying it could be gallstones and if not I would be seeing a liver team) and if that’s the case I will be going home today. He said this before i had even had my Ultra Sound.
I was nill by mouth from midnight and was told my ultra sound would be at 11am. At 12pm i still hadn’t been taken for my Ultra Sound so I buzzed a nurse asking why I’ve not been taken and they said they thought I had already been told it was changed to 1:30pm. I asked for some fluids because of the length of time I was going without food or drink (especially considering my ‘dehydration’ and urinating problems) this request was denied by the Dr’s which even the nurses thought was strange.
At around 1:15 i pressed my buzzer as i was in a lot of pain and knew the ultra sound would make it worse but a nurse still hadn’t responded to me by the time the porter came to take me to my scan. The porter could clearly see how distraught i was and took it upon himself to get a nurse for me so i could have some medication before the scan. That was very kind of him. However, i think it annoyed the nurses as they slammed down my notes on the desk on the other side of the ward forcing the porter to walk all that way to get them rather than just handing them straight to him.
Despite the Dr being certain he would send me home on the Monday i still had not heard anything about my scan at 6pm. Concerned that something again had gone wrong i buzzed a nurse and was told that the Dr had ‘forgotten’ to come and see me. I was not given any information about my scan.
At this point my family were getting very frustrated at everything that has happened in hospital and my Mum came to stay in Bristol to help me deal with the Dr’s.
On Tuesday the 14th i wasn’t seen on the morning rounds but i was later seen at 11am by another DIFFERENT Dr! This Dr hadn’t read my notes, asked me to explain the past few weeks. I gave him all the information, yet despite detailing the blood in my urine and the liver enzymes in my blood and my difficulty and pain urinating he basically shrugged and stated that he is a surgeon and he doesn’t know what is wrong.
The Dr stated that they are going to read through my notes now (something i feel they should of already done) and talk to the liver team. However, he said that he will likely send me home if they do not know what is wrong. He even suggested that i see the pain team to try and manage the pain. I firmly explained that i MANAGE pain every single day and have done for a year and i am not putting up with any more pain because they cannot be bothered to find out what is wrong.
At this point i am starting to not only be very upset and stressed but also very frustrated. Another Dr came to see me a few hours later and stated the same as the previous Dr, that they still don’t know what’s wrong despite the problems with my blood and urine. I don’t have any obvious things wrong with my gallbladder or liver so they were stumped. I pretty much just let all of my frustration out at this point and ranted about everything that has happened.
I said that i will refuse to go home unless I have a written letter (not a lame discharge letter stating it is my fibro) stating they are not concerned with the blood and protein in my urine.. or the liver enzymes in my blood.. or the fact I cannot urinate properly. I want them to say they understand that my pain clinic team states this is not a Fibro/ME problem and that my GP also says this is not a Fibro/ME issue.
I Also want an explanation as to why the consultant i have been seeing says if the scan says no gallstones she would send me to the liver team, yet he is completely happy to send me home with no questions asked. I said that he would be liable if something happens because of him not taking this seriously and looking at all the facts rather than coming in for 5 minutes and stating he is sending me home.
At this point it is completely obvious that a surgical team cannot help me and i wanted to speak to a medical consultant rather than a surgical one. After making it obvious how completely stressed out i am and annoyed by the complete lack of communication and care i have recieved he agreed with me and said he would be speaking to someone from the Liver & GRI team.
I was seen by a very good Dr from the Liver/GRI team pretty quickly and his whole persona was completely different. He sat down and read through all my notes, asked me lots of in depth questions about my previous medical history and properly examined me. He stated that he had looked at my blood results from the last few years and after spending a good while with me he said that he thinks i have a virus that spiked the liver enzymes so he wanted to do some micro screenings on my blood.
The Dr then tailored my pain relief and various other medications to suit me rather than just generic things that weren’t benefiting me at all. He noted that i had a Vitamin D deficiency and that i needed to take those vitamins again. Some anti inflammatory tablets were prescribed as well as pain relief to help with my stomach swelling. He was very confident that it was nothing super serious like a disease but quite possibly a virus that affected the whole of my abdomen.
Happy with this information and very tired from an emotionally draining day i sent my Mum and BF home so i could get some rest before being drained of more blood for all these tests.
The next morning (15th of October) i was seen by the same group of Surgeons i had seen before and they just wanted to check that i understood everything that was happening and that i was fine for them to look so closely at my blood.
After a good days wait many vials of my bloods were taken so they can begin the testing.
The following morning (Thursday 16th of October) i was told that i would be able to gome. The reason being the micro screenings could take a while and i would be having follow up appointments as an out patient with the gastroenterology team. After 15 days of being in hospital i can honestly say i was glad to be going home where i could get some proper rest and try to recover.
I was told that a weeks bed rest with a weeks worth of medication was needed and that if it got worse or after the week it hadn’t resolved i would need to go back to my GP. A few days into the week of bed rest i received an appointment for the Transvaginal ultra sound that was originally cancelled before i was discharged the first time. This was obviously quite a shock because i was told i definitely did not have ovarian cysts and that this was not needed. The ultra sound appointment was scheduled in for the 29th of October which is pretty quick for an outpatient appointment.
I was also contacted by my GP saying that they wanted to book an appt with me as they have received my notes from the hospital and were waiting for the results of the blood screenings. That appointment was booked for the 6th of November.
After a weeks worth of strict rest and taking all the medication they gave me bang on four times a day i am still in a lot of pain. The stabbing is still in my abdomen and lower back. On top of that i am now getting extreme migraines when i move around. Following their advice i called my GP and explained that i have ran out of the medication they gave me for the pain and that i couldn’t hold off till the 6th.
I was given an urgent appointment to see a Dr i hadn’t seen before. He read all of my notes and asked a few questions and i explained as much of the two weeks as i could. He examined me and questioned my Vitamin D deficiency and i explained that i knew about that and would be getting tablets and that it wasn’t relevant to this pain.
The Dr then said ‘well lets just carry on as we are’ i was shocked and said that i had no pain relief or anti sickness left. That i was still in the pain that kept me in hospital for two weeks and i was now experiencing migraines as well. He said that there were two results from my blood screenings back.. the Hepatitis which came back Negative and Glandular Fever which also came back negative (he even said he has no idea why they tested for GF in the first place). Basically he had no answers and just rushed me out the door with no assistance, just a wasted visit.
I am at a complete loss as to what i am supposed to do. I was discharged into my GP’s care but they aren’t helping. They haven’t even prescribed me pain medication to tide me over until i get my blood results back or results from the next ultra sound. I currently don’t have any appointments at the hospital to see a Dr (apart from scans) and i have nothing to ease the pain or any clue as to what is causing it.
At this point i don’t think there is anything i can do except give up trying? Am i just supposed to carry on with this additional pain that can’t be eased by my usual medications? No idea where i go from here! I ofc will be attending my transvaginal ultra sound appointment on Wednesday but i have no idea when i will receive any results back.
Four weeks with this pain, two hospital admissions, two discharges after 15 days. Many many Dr’s, a week of home bed rest and i am still in no better condition, with no diagnosis and no care.