Yesterday I woke up knowing that I had another appointment at the hospital, this time it was with the pain clinic, so whilst I was hopeful that they would find some ways to help me I was anxious. An overwhelming feelings of anxiety always floods my body on the days I know that I have the hospital, I’m not entirely sure why, maybe it is because I fear that they are going to want to cut me open and it will go wrong again, maybe it is because I worry that they are going to tell me once again that it is all in my head and that there is nothing wrong with me, even though I’m screaming in pain. Maybe it is the fear of hearing the words “There’s nothing we can do…” and there not being a ‘but’ after it. Perhaps it is a combination of all of them, but nowadays I get anxious, as soon as I wake up. I start panicking about getting to my appointment in time, and making sure I have everything written down that I want to go over. I panic that the Dr is going to laugh at me, like some of the others. I constantly check my handbag that I have all my forms in there and the questions and the list of medications and the list of dates of when everything happened and what happened. I constantly go over in my head all of the symptoms, even though I can’t forget them, I am living with them. If I am going alone I check the bus or train timetable every 15 minutes just to make sure I didn’t read it incorrectly or that they haven’t suddenly decided to change it. I do so much worrying that by the time it actually comes to go to the appointment, I am exhausted.
But nevertheless, yesterday afternoon I set off for the bus, over an hour before my appointment, although it was only in the next town over and is a 5 minute ride away, I didn’t want to take any chances and I also had to walk from the town centre to the hospital. I listened to my music and tried to take my mind off the appointment. When I arrived in town I suddenly realised how silly I had been and suddenly had all this time to kill, so I walked around the shops for a while, but then again the anxiety was setting in… “What if it takes you longer to walk to the hospital than you think?” It is a 9 minute walk but in my head I was convinced it would take me 30 minutes or more. I know that due to my condition I do walk slightly slower than I used to, but that was ridiculous…. but then my head won again. I set off with more than 40 minutes til my appointment and it took me 12 minutes to walk it… so I would have been fine. I was early for my appointment so I got a drink and sat in the waiting room. The receptionist told me “You’re very early… you must be keen.” I laugh it off, just pretend that I had nothing better to do and it wasn’t actually that I was paranoid that I would miss my appointment.
So I sat there, I read nearly every magazine that the waiting room had to offer and was even scrolling endlessly down The Daily Mail Celebrity Gossip column just to fill the time. I was the only person in the waiting room for some time, and again my mind is telling me “You’re in the wrong place… maybe you should check that you’re in the right place…. You did go to Outpatients 2 didn’t you and not 1…” Sitting here now writing it, I know how stupid it sounds because I followed the signs and I even checked in with the receptionist who took my name and my forms and told me I was in the right place and to just take a seat. I have been wearing Harry’s fitbit recently just to see how I get on and if it would be worth me getting one myself…. I checked it, I had done thousands of steps and my heart rate was through the roof. All the walking had caused my pain to flare up and for my stomach to distend. It also read that whilst resting, my heart rate was at 142BPM. That is ridiculous, but that is how anxious I was and how much pain I was in.
Slowly more people arrived and I started to settle a bit. Then a patient came out of the room I had been told I was going in to and it calmed me more. My appointment time arrived and much to my surprise, the pain clinic was running on time. I joked to myself, “Maybe this is a good sign.” Because anyone who has to go to a lot of appointments knows that they are never on time and it usually means a lot of waiting around.
Finally a gentleman appeared and called my name. He shook my hand and followed me in to the room and told me to make myself comfortable.
Then another rare thing happened… He introduced himself properly, and he also introduced the young gentleman in there with him, who was shadowing him hoping to go in to chronic pain management as his specialist field. I was already feeling at ease.
He then took out my notes and a pen and started jotting things down… “here we go, another one who just looks down and scribbles whilst he talks to you” I thought, but suddenly he put the pen down and was apologising. “I’m sorry about that, I thought I had started a form for you, but I have misplaced it….” This was rare again… I was nearly speechless.
We then talked. We discussed what had happened to me, but he had clearly read my notes as he was up to speed on things, he just had a few questions that he said were a bit unclear in my notes. He then asked me about the pain, and I told him.
I also said “I know it sounds stupid, and I feel silly saying it, and every other doctor has told me it is in my head and that there’s nothing wrong with me or that I am making it up..” I then described my pain.
My lovely new doctor looked me dead in the eye, and said “It doesn’t sound stupid at all… it makes perfect sense to us. I cannot believe that people have told you they think you are making it up.” The younger doctor was shaking his head as well.
Because of the complexity of my case and the wounds and the pain, he asked if he could take a look at my stomach and perform some tests. The younger gentleman stayed seated and said to me “Would you mind if I observed as part of my teaching?” Again I was speechless, I couldn’t believe I had actually been asked if it was ok, whereas before I have had a room full of student doctors all gathered around my wound and looking, prodding and poking, whilst the consultant talked at me without even being asked about it. But here I was being asked if it was ok. Obviously I said it was no problem, as long as he didn’t mind a weird belly button and a fat belly. We all laughed. The old doctor than said “I’m just going to get one of the ladies to come in with you also, so you won’t be the only lady if that’s ok?” Again I was gobsmacked. I had no fears and didn’t really think about having the nurse with me, but in she came. The doctors were again more interested in making sure I was comfortable on the bed at first than anything else. Once they had made sure I was happy they began.
The doctor then spent about 10-15 minutes carrying out specific tests, and as he went, he told me what he was finding, and was asking me questions. It was fantastic. One of the tests was very painful and I began to cry, he stopped, apologised again, told me I was being too brave, I needed to tell him when it started to hurt even if it was a slight discomfort or when the feelings started to be different. He said to me, “In this room, you don’t need to be brave.”
We carried on the tests and I was more open, I told him as soon as the sensation was a little different, or if it was unpleasant. Eventually he helped me off the table and we took a seat back at the desk.
As I sat I readied myself for the usual “There’s nothing wrong with you.” or the “It’s IBS” or some of the other bullshit I hear regularly.
But this is where my day, and I think my life turned around. I sat there nervously, and the doctor sat and looked me right in the eye and he said. “The issues with the bowel, tell me about them…” I told him, that there isn’t any issues now, there was at first after the operation and whilst I was on a lot of medication but since they’ve been fine. Almost back to normal considering I was still taking morphine.
We then spoke about the pain medications I am on and how I have stopped taking a lot of them because I found that they weren’t helping… again I informed the doctors in front of me that when I have said this to doctors they have told me “Well if the drugs aren’t helping it’s definitely in your head and nothing can make that go away unless you see someone.” Once again they sat there shaking their heads.
The doctor than looked at me and told me the following – I will try to explain it as best as I can remember and as best as I can, because some of it was lost on me:
“It isn’t in your head, absolutely not, I can feel and see that you are in astronomical pain, and you have been left to suffer and have had an awful time, absolutely awful.
I am not a surgeon, I am an anaesthetist, so I cannot tell you if there isn’t anything internally wrong, but the tests and the doctors are saying that there isn’t. Just because there isn’t something wrong surgically, doesn’t mean there isn’t anything wrong, and this is where you have been failed.
What is wrong with you is that your pain and discomfort is caused by nerve and muscle damage. About 30% of patients will have numbness or slight pain after a surgery after recovery, however about 5% if not less, have awful pain like you have.
What happens is where the body heals back together the nerves usually align and over time they heal and the numbness and pain goes, however, in rare cases like yours, they do not align and it sends them in to melt down.
Where you had 3 operations in such a short space of time, and you had large and numerous infections and were left with a large wound that was packed and stuffed, the muscles and the nerves are damaged beyond repair. This means that the slightest movement or touch will cause extreme pain because the nerve endings don’t know what they are doing. So this explains where the area might feel numb, but that it is also painful at the same time, and the muscles are damaged too…
The reason you get that bloating, to the point you look pregnant, it is because of inflammation. All around the nerves and muscles in your belly button and scar and general abdomen area are inflamed also, so this means if they are really agitated, they will spasm, and expand. If you get pain in your hips, legs, back and neck also, this is what is causing that. The damaged muscles in your stomach are causing issues with all of those and that is why you can’t walk far or stand etc…”
I was starting to get excited, I was getting answers, and they all made sense. The doctor continued…
“The sad news is, this is permanent. You will never be back to how you were before. This pain will sadly be forever, however, I don’t want you to worry. There are things I can do which will enable you to have a life again. You will have to have treatment for the rest of your life, but I will help you get your life back on track. You won’t be able to work in a kitchen or a pub or any job where you are standing and lifting for long periods of time, so I’m sorry, but a career change will have to happen… but you will be able to work again. You will be able to exercise again, and enjoy your wedding coming up… That is a beautiful ring by the way… and you will be able to have a family. I will work with you so that when you want to start trying we can alter the treatments. You will have a new normal….”
I was smiling. I actually began to cry a little, (again I had already got teary eyed when we were discussing what happened to me and cried during the examination…) He then went on to explain the treatment plan for me. It will involve having to have injections, in a surgical setting – so that it is super clean and I don’t get more infections etc. The injections will be a mix of anaesthetic and steroids and they will be in to my belly button and the areas of skin around my scars and the painful areas. I believe that the aim is that it will stop the pain, and will stop the nerves from being agitated or something. All I remember him saying is “I’m not going to lie to you Emma, it will really really hurt, and sting when I do it… but it will be worth it.”
I said “A few minutes pain every once in a while will be worth it, if I get my life back.”
I thought that would be it, but he carried on…
“I don’t want you to worry, because if the injections don’t work – but I am confident that they will – I have other things I can do, but you will get your life back.
There’s also a few other things I want you to do. I want you to join either a yoga class or a Pilates class. Talk to the class leader and explain your situation, you probably won’t be able to do all of the poses at first, but my hope is that eventually you will. I want you to do this because it will give you some time weekly when you work on yourself. Whilst you have family to talk to, it will be good for you to be in a class, a step back to normality. It will also help stretching and toning the muscles up and that should help.
Also, I will send you to physio to help strengthen your stomach muscles from where they have been sliced through. Also, where you said your belly was fat earlier… Whilst there is a little there, I want you to know, you aren’t really fat. The general mass in your abdomen area is the muscle. It needs working on to tighten and then you should find that you are back to normal again really. So do not worry. I also want you to stick to walking – No jogging – and the exercise bike. Cross trainer if you want to join a gym. Once you are stronger and pain-free, then we can look at upping the sports and activities.
But I don’t want you to do anything more than walking or bike until the injections have started.
I am also going to write to your GP and tell them my findings, but I am also going to adjust your medications, there are things you need to be on that you aren’t and I feel that you need to be on a stronger pill based morphine….”
He then looked at me again, and took me by surprise…
“I am going to ask you something and I want you to answer honestly, between just us in this room… Are you low? Depressed? I only ask because you got a bit teary when we discussed what happened?”
“Yeah, I suppose I am, it’s been difficult accepting that this is life now and not being able to work or lead a normal life, it’s tough.”
The doctor continued… “That is expected. You aren’t on any medications for the depression why is that?”
My GP hasn’t offered them, I have mentioned I was low but they said it was to be expected so I’ve just been getting on with it.
My doctor again surprised me “Well, if it is ok with you, I would like to mention in my letter to the GP that I found you to be low, and that maybe they need to have a conversation with you about medication. I am also going to send you to the management team, to see someone you can talk to. Again I am not a psychologist, but I can see you would benefit by talking to someone professional. I am not saying you aren’t coping, you’ve done amazingly to get through it all but I think you may need help with acceptance. Accepting the loss of your old self and life and coming to terms with this being it.
I feel that you might have PTSD…” He could obviously see that I was shocked… “You went through a very traumatic experience, from your notes I can see you nearly died on the operating table and you are lucky to still be here. What happened to you was terrible, and you should be able to see someone if you want to. I’d advise it, and I will tell your GP and get you booked in for the injections and to see someone.”
I can’t lie, I was speechless, all I could say was thank you. I couldn’t believe that it has taken this long, but I had a diagnosis, I had a treatment plan, and I had this mans word that he would help me. I was so happy. As I shook his hand again and said thank you before I left he said “I’m booking you in now. I’ll see you in theatre Emma.”
I was so happy… I text Harry and my mum at work and told them it was fantastic and I’d fill them in when they got home. I called my nan to fill her in and she was so pleased.
When I went in to the hospital yesterday, it was cold and grey and looked like it would rain, when I got out… this was the sun.
It was hot, and sunny and like a completely different day. I like to think it was a sign of what is to come. That I got my good news and that my future was looking brighter.
It goes to show you, that if you are not happy with a diagnosis or a treatment, keep going until you find one that you are. Doctors like to treat what they know and they ignore the stuff they don’t. This doctor yesterday told me that I had been severly let down by all the doctors who had tried to fob me off with an IBS diagnosis.
Keep fighting, you are the only one who knows how your body feels, so you are the only one who really knows when something is wrong. Eventually you will find someone who knows what they are talking about. Look at me, it’s taken me 3 surgeries, 3 different opinions and then a pain clinic appointment with an anaesthetist and not a surgeon, to discover what was really wrong with me.
So, now I am on rest until I get my appointment for treatment, and then it is operation Get My Life Back! Whilst I’ll never be who I used to be, or be pain free again, or back to normal, I now have a new normal to look forward to. And once I can start my life again, I am going to make sure it is the best life ever.