Join Date: Aug 2013
Scared. Frustrated. Upset. Unstable. Heartbroken. What is wrong with me?
Finding the words to start this isn't coming easily. I don't know where to start, it's all such a mess and I don't even understand it all myself.
Late February my youngest daughter very neatly died having got Toxic Shock Syndrome, something so rare that many doctors hadn't seen it for years. Anyway, going back to when she first started getting ill I remembered the doctors saying "IF she gets ill following the burn, get her seen by a medical professional as soon as possible as it may be TSS, although extremely unlikely, but just to be safe". Now me being me, I instantly looked the symptoms of TSS on Google, just in case.
24 hours following this my daughter became extremely drowsy and didn't want to eat her dinner, which was extremely unlike her. Although she was less than a year old at the time, she loved and still does love a big plate full of food. I didn't have a thermometer with me, but to touch her she felt hot. Don't get me wrong, at this stage she just looked like a tired baby girl, not blatantly ill. I guess my main concern was the fact that she just wanted to sleep. She was never a good sleeper and after sleeping 4 hours during a car journey just before dinner, I knew that she would be full of beans if she was okay, most likely up until midnight. If only.
After half an hour or so of trying to figure out what to do I called the burns unit and explained her symptoms. The told me that if she appeared mildly ill then to just keep a close eye on her or take her to A&E, but if she seemed extremely ill to call the ambulance. To look at she looked mildly ill but I just knew she wasn't right, I knew that something was going so strangely wrong. My husband suggested that we take her to bed and see how she is the morning. I guess I contemplated doing so for a few seconds, but something just didn't feel right.
The ambulance crew arrived and made me feel like I was crazy. I remember them saying "aww, she's smiling now look", though they agreed to take her in I could tell that they were put out by it and didn't think it was necessary. The ambulance crew remained in a joking and light hearted kind of mood while we took the hour drive to the hospital (no blue lights), all the while I saw my baby deteriorating and they saw a paranoid mother with a daughter who had a common cold. My husband remained at home to care for our eldest daughter.
We finally arrived at the hospital and saw the triage nurse almost instantly. I explained everything and she started checked my daughters temperature, blood pressure, etc etc. I raised my deep concerns about the possibility of her having TSS, the nurse didn't say anything. We were put in at none emergency but needed to be seen within the hour as her temperature was above 38.
We were eventually taken in to see the doctor and again I expressed my deep and ever growing concerns about it being TSS. He told me that it was too early for it to be TSS and that it's most likely just a virus. I explained that the burns unit thought otherwise and that I had read the symptoms and knew that although unlikely, it COULD be TSS. He told me that he was the doctor and knew what he was talking about. My daughter at this point was barely able to hold her own head up and I became hysterical. The doctor took swabs from her throat, convinced it was viral, and told us to go back and wait in the waiting room as he needed to see somebody else. I told him that something was wrong, something was so wrong but all he did was saying "I'm not denying that something is wrong, you are in A&E, she's obviously not quite herself". I hopelessly left the room and walked around the waiting area shaking, crying and cuddling my poor, poor baby. Nurse after nurse asked if I was okay, every time I shook my head and they just looked at me and walked away.
A short while later I contacted my husband and told him how worried and scared I was while crying, he told me that it was probably nothing to worry about but he'd make his way to us.
Our daughter started with diarrhoea and sickness. I felt so lost. Why wouldn't they listen to me? She looked awful, surely not only I could see that?
Eventually we were taken into another room and they started trying to get a cannula into her to take some blood. It was awful. They poked and prodded her for so long, taking forever to get a cannula in her. At this point I noticed a rash on her tummy and told the nurse. Nothing much was said about it, it just seemed like we were going through the motions, but nobody was rushing, it wasn't a medical emergency in their eyes, they didn't see it. We were left alone and I held my baby tight, trying to breastfeed her but not really able to because she was so drowsy. Some time after, my husband arrived. He also could now see that she looked very ill and something certainly wasn't right.
Not long after my husbands arrival the plastics doctor arrived (a man who sees a deal with TSS). He knew straight away and told us that she needed to go straight to theatre to get her wound surgically cleaned and scrubbed and then she would be moved to the intensive care unit. Finally, somebody else knew! I felt so relieved yet so, so petrified. My baby, not even a year old was going to theatre, how could this be right? How did this happen? Am I dreaming? Please tell me I am, PLEASE. So many emotions crossed my mind, all still there, still fresh in my memory. Watching the surgeons put your baby to sleep is absolutely horrific, and just not knowing if I would ever see her beautiful blue eyes again. I hesitantly left surgery and held my husband while he held me. I remember thinking that even if she comes out of surgery, ICU is where people go to die, right? That's where the most critically ill people go, the ones that people expect to die.
The first time I saw her laid in her cot in ICU was heartbreaking. She had so, so many wires coming from her, too many to even imagine. Machines were beeping, a machine was breathing for her, how could this be true? She was happily smiling and laughing just the day before.
Slowly but surely she began to stabilise a little, but still remained on the machines, still on what seemed like hundreds of antibiotics, having blood pressure medication, a drip, a feeding tube, she had every possible medical equipment attached to her tiny little body. I'm not certain how long she has been in, but I remember her hands and feet being stone cold, her body had gone in to shock and all I could do was desperately try to warm her tiny hands and feet.
My husband and I were allowed to stay in the hospital and could visit her bedside at any hour, that was a wonderful thing to be able to do, to have a quiet space and place to sleep upstairs but I wished we wasn't there, I didn't want it to be happening to us. It wasn't fair.
I can't specify days, but she went back to surgery to get her wound cleaned again and eventually got her skin grafted. That week in ICU felt like a lifetime, like we had been there our whole lives, but eventually they took her off the paralysis and sedation and I could finally cuddle my beautiful angel. It was like holding her for the first time again.
After one night off the paralysis and sedation she was quickly moved to a ward as she wasn't critical anymore. Hallelujah, I hear you say? Well, you'd thing so. I hated it. In ICU I knew that she was getting the upmost best care, I knew that her heart was beating and what could be monitored was being monitored. It was somewhat comforting, in a strange kind of way. To me it felt like she was still incredibly ill but now I was expected to care for her, almost single handedly. She was still so sleepy, so drowsy, still had a rash, still needed blood pressure medication and antibiotics, her skin was peeling, she still was so, so unwell and I hadn't expected, I'm not sure why. I really struggled with her being on that ward, there were dozens of children running around, playing, laughing, joking yet my baby just wanted to sleep and wouldn't eat, how could this be the place for her, she didn't fit in here, these children don't look ill! One morning I remember going back to ICU and begging to registrar to take my baby back, insisting that she wasn't ready for her ward, begging for them to look after her. I pleaded. Of course, they didn't take her back in there and she did start to play, to eat, to become my baby again, it was such a relief to see. Although it sounds astoundingly bizarre to beg for your daughter to go into ICU, I so wanted her to be back in their care.
She eventually came home and it was amazing to see her and her sister reunited. It made me appreciate every precious second with them. Although I was so thrilled, I hates anybody but me touching her. Especially my Mum. I was worried that people would 'infect her', they couldn't possibly be clean enough to touch my baby. I cringed at the idea of letting her crawl on the floor, but I had no choice, I had to let her have fun.
I guess that's where the negative thoughts started, that when I realised that things can and do go horribly wrong and there is nothing I or anybody else can do to prevent it. I started reliving every moment, crying while doing so, obsessing over my hatred for the doctor that I felt called me a liar, filled with the thoughts of 'what if I would have taken her to bed that night? Would she still be alive?', probably not. Now, while I can see that it's normal and rational to think that I did take her in, I did get her help eventually, I can't stop myself from thinking 'what if I hadn't', and that haunts me. Even now when she reaches milestones like saying new words, walking, and generally amazing me I think how wonderful that is, but at the same time I feel so sad that she nearly wasn't here to do that, and I go right back to that waiting room.
These feelings have been going on for a few months now. Some days I lay and I cry about it, or quietly shed a tear when I look at her, other times I feel a deep sadness but can contain my emotions. I'm now 16 weeks pregnant and I feel so unstable and so unlike myself. A few weeks ago I wanted an abortion (something I am TOTALLY against) and I begged my husband to agree to us doing it, thankfully he didn't agree and I continued on, but I still can't bare the idea of this baby being born and then nearly dying on me, or worse, actually dying. I'm petrified. The pain just won't go and I find myself wanting to escape the thoughts at all costs. At the same time I wanted an abortion, I also decided I wanted to go to university to study counselling, to focus my mind on something new, to help heal me. Although, now, only a few weeks later I hate the idea of going to university, I don't want that, I don't want to spend hours upon hours away from my husband and babies. Never. But at the time, I thought with all my heart that I wanted both those things.
Here goes with the hardest bit of all. The biggest regret of my life. The story here begins with me wanted to talk about what happened to my baby, wanting people to know and understand how awful I feel, but nobody understands, not really. I told my husband that I wasn't coping, but he just told me that "she's okay, look at her, YOU saved her", but that's not what I see, that's not what I feel. He suggested I see a counsellor about it all, but I instantly shrugged the idea off and told him that wasn't necessary. I then went on to tell my closest friend how I felt and she repeated what my husband said, and I can't ever bare to hear it, let alone believe it. I mentioned it a few times afterwards, but I felt that they didn't understand, they wasn't telling me what I wanted to hear (although truthfully, I don't know what I want to hear) I felt like I was on a downward spiral because I couldn't stop thinking about it, but I also wanted somebody to listen to what I said, to just say "yeah, that makes sense", it's so hard to explain, I don't even understand, and I know I'm not making any sense at all. I don't really have any friends anymore, completely out of choice (typical introvert) and that sits well with me, but I guess it isn't so great when you need a friend to talk to. Anyway, I can see that I'm trying to avoid actually telling you the next part, but it's so hard to explain, so hard for even me to believe.....
While I was going through the abortion, university, downward spiral thing I started speaking to my ex online, an awful man, who I know is awful, but I initiated conversation and started telling him what had happened. He wasn't supportive, he just said that what I said made sense, and I liked having somebody the vent at. The conversation lasted a couple of days and he would ask how things were, what I was up-to, etc, and I would reply and say what I thought of that particular day. The conversations weren't anything shy of basic, but I felt like I was being listened to. Idiotic of me, I know. Remember I told you that this guy is awful, well it's true, I know it and he knows that I know it. He rambled on some about his life, how he was so much more mature than when I knew him and how he was enjoying life, blah, blah.
On one particular day, just a couple after I had started speaking with him he asked what I was doing on that day, I explained that I was going to a well known and very big shopping centre with my Mum, again just the usual chit chat. A few hours later I went to reply to his previous message and he explained that he was also going to be there and we could meet up. I knew I should say no, but I guess a chat in a busy shopping centre wouldn't cause any harm, right? My battery was low so I said ok and asked him where I should meet him, he instantly replied and told me to go to a specific room what is intended for talking, I agreed and I went. I don't know why I went, because now I feel sick that I went, I don't even like the guy, seriously, I don't. I felt like I was in a bubble, that's the only way I can explain.
After a few minutes of arriving he made a move on me, and for a minute or so, I let him. I remember him being near me and feeling physically sick, wanting my husband to come and rescue me, not knowing what to do. I felt like I had come out of my 'bubble'. I pushed him away, told him I love my husband and ran away crying. What was happening to me, I thought. When I look back now I feel so physically sick, so ashamed, so awful, so alone. Words cannot describe it.
I eventually told my husband of my deception and he is of course devastated and cannot understand why I did it, why he isn't good enough. But the truth is, I don't know why I did it? My marriage is and feels PERFECT! So why did I do it? Why did I want to kill my unborn baby? Why did I want to go away and study? Why did I take to 'him'? Why did I let him take advantage of me? I want to understand my actions, my thoughts, but I don't, I truly don't. My husband keeps saying "how can you not know?", but I don't, I don't understand. I feel like I was another person, a crazy unrecognisable person and it makes no sense, no sense at all. My husband IS amazing, he is. I adore him! There have been many times that I've cried because he had to go to work, watched him sleep, laid in his arms for hours and hours, laughed with him, all the wonderful things about marriage we had right up until now. So why did I talk with my ex? Nobody believes me when I say that I think my marriage is perfect, because I wouldn't have done it otherwise, but it is perfect.
Right now I feel completely unstable again. The pain I have caused in my marriage I unbearable, it hurts so bad to see my husband so devastated, it hurts so bad not to be able to hold him, cuddle him, kiss him, laugh with him, make love to him. I hurts so bad :'( Two days ago I took an overdose, I couldn't bare the pain, couldn't bare not understanding my actions, couldn't bare that I had done this to us. I still can't. My husband called an ambulance and I discharged myself from hospital, saying that I wouldn't do it again, although not quite believing that myself, not really. I didn't want to die as such, I just wanted to disappear into a coma, stop my husband from feeling pain every time he looked at me. It's so hard. So incredibly hard. What is wrong with me? Is it PTSD as suggested by the doctor? Is it Bipolar? It's something, I know it's something, what what? What is wrong? I have symptoms of Bipolar, but not many. I believe that the unobtainable is obtainable. I believe and want to move home in a day, I want to buy a boat and live on it, and sometimes I believe my husband can pack work in and do that, but he won't. Right now I know it isn't possible, certainly not right now, but when it's in my mind I feel so frustrated that we can't do it! I sometimes get spates of lack of energy, no interest in going anything, irritable, feeling despair, ugly, disgusting and have illogical thoughts. I guess the thing that puts me off it being Bipolar is that I don't really go manic, alright I want and I feel I can achieve the unobtainable and get so frustrated when it doesn't happen, but that's all.
I feel so scared. I'm seeing a counsellor on Monday, but I don't see how she can make me feel better?
I want my husband SO much. Why did I do this? Why do I feel like I don't even recognise my own actions?
I'm sorry for such a long post, but I really needed to get it out there. So if you're still here, thank you.