Lupus is Winning

When Jamie died I couldn’t have cared less about anything. And yes these are the bits that make me sound like an arsehole, but anyone and anything just wasn’t important. I was and am lost in needing Jamie back, in wanting him here, in hoping all this just being a nightmare I would wake up from. When people say come on you have to keep going for William, for your family and friends…no I don’t, I don’t want to, I just want Jamie. I didn’t have two children so I had a back up if something happened to one of them, to get to a point in my life where I would have to choose one or the other. I had two to love them both till the day I died, to see them go through their lives, finish school, get jobs, fall in love, have children, be happy and independent brilliant gentlemen. It annoys me that I’m made to feel like a total bitch for not being placated by having other things and people in my life, I want Jamie, end of and if you go through this you know exactly what I mean.

Part of not caring about anything other than wanting Jamie back was not caring about myself, I had stopped taking my meds. I barely even took my pain medication because in a way I wanted to be in pain, I felt numb most of the time so feeling the physical pain helped me knowing I could still feel, the Crisis Team later labelled it as self harm and I suppose they were right it was. But with the imuno-suppressants and the other medication controlling my Crohns and Lupus they take time to build up in your system and them take time to fully leave your system. My body had started hurting more, my joints swelling and making it difficult to move around the house, a great excuse not to go out, the fatigue was overwhelming, my mouth was full of ulcers my teeth rubbing on them constantly. I was being sick every couple of days, the weight had dropped off me. My mum making me eat but nothing staying in long enough to absorb in anyway. I was looking as bad as I felt, but still I didn’t care. What if it killed me, so what if it did?

Itchy eyes that are dry but stream constantly are another annoying symptom, but easier to cover when you are crying everyday anyway. But the irritation that I was letting get worse over the week away in Filey couldn’t be ignored. I got myself some eye drops and that usually gets me through. By the end of the week my face was swollen, I hadn’t bothered to look in the mirror at the inside of my eye, again I can’t describe how little I cared. But on the Saturday night as I began to pack the car I looked as it was starting to affect my vision, I had a black spot at the top of my vision, only small but it was there. As I looked into the lower lid I could see a small ulcer. I was only driving down the road to Tara and the boy’s in the morning after check out so it would be fine, but I was a bit concerned about driving all the way back to Huddersfield with impaired vision, I didn’t care but I’m not an actual arsehole and I would never purposely endanger William and a bunch of complete strangers in their cars.

My original plan was to stay with Tara till Monday afternoon, as William wasn’t back at school till the Tuesday, that would give the boys some time together and Tara was going to help me sort out my benefits as my brain wasn’t functioning with what I was dealing with adding in brain fog from the Lupus and Tara was great with that kind of stuff. By the time I had got to her on the Sunday afternoon my eye was causing me so much pain, I am on a morphine patch (as my body doesn’t absorb tablets very well especially when its not well) so I had that and I was taking the full dose of Oxicontin and paracetamol. I cant take any Nurophen type of meds, like anti inflammatory because of the Crohns. So there wasn’t anything else I could have and the pain was incredible, I have had two bowel removals, had liver derangement that severe I had to have my gall bladder removed, my appendix basically burst inside me as I had that removed, I have pain every day due to the Crohns and Lupus, I have a very high pain threshold but I felt like taking my eye out would be less painful, and Tara could see it was getting too much for me.

It was Sunday in a small village, there were no 24 hour pharmacies we could nip to and get some advice and some antibiotic type eye drops. The only option was to ring 111 and see what they say, and I knew already what they would say. Every time I ring 111 at home its usually when I have sat in bed for days hoping I would start to feel better and then it would always end up in them sending an ambulance to the house to take me to hospital…I hate going to hospital…I always get kept in, one day leads to another and then 30 days later I am self discharging because what they are doing for me there I can do with Jamie and my parents help at home and I’m at home and you always feel better in your own bed with your own stuff. So I didn’t really want to ring them, but I had no choice, it was literally getting bigger and more sore every time we looked at it.

Ringing 111 ended how I guessed, would you like an ambulance or can you get yourself to the hospital, Tara immediately said there would be no way she would let me go alone and she would drive me up, and I was so glad she said that. So the closest hospital was Hull, a good 45 minute drive. Jayden was 19 at the time and William adored him so I knew there would be no issue there, he would be more than happy to play Xbox with him and get a takeaway pizza.

Then all of a sudden my heart started racing, my breathing got really difficult, I started crying, sobbing, I was having a panic attack, and it was big, really big.

I walked out of the living room away from William and into the kitchen, Tara followed. I couldn’t stand still, I was moving from one foot to the other, back and forth, squeezing my hands, I could barely speak because I was crying so hard it was taking my breath. It felt like someone was squeezing my heart, my hands started to get pins and needles, I could see my fingertips going white. All of a sudden it had hit me. And its happened a few times since. But right there was the hole, the space where Jamie would be, whenever I went to hospital he was getting my meds together, taking Williams attention away from the paramedics and whatever they were doing to me, making sure he didn’t get upset, he was messaging me while I was in A and E letting me know William was ok, telling me things were fine, he was fine. Asking what was being said, if I’d be staying in, if I had forgotten anything, if I wanted him to come and see me when I was put on the ward. And it was gone, he was gone. And again it was like I had just been told, like I was going to hospital to identify his body, to see him laying there. I was panicking and Tara was trying everything she could to calm me down to try get me breathing properly, but I was too far gone. This was the first time I had needed to go to the hospital since, the first time I was going back to any hospital since. Days later Tara had said she had never seen such a bad panic attack and was seriously worried for me because of how bad I was.

All the way to Hull Hospital it carried on, every time I thought I had a hold of myself it knocked me off my feet again. I got to the point that I was more upset about Jamie than going to the hospital or my eye at all, and by this point the ulcer was so big it was holding my bottom eye lid away from my eye and half my vision in that eye was just a black smudge. I had started messaging Jayden and he was telling me William was fine, sending me pictures of him playing the Xbox, happy and unfazed by me not being there. It was helping but at the same time the problem was still Jamie not being there, Jamie not playing on his Xbox with him, Jamie not sending me messages asking if I was ok. So the panic was still there. By the time we got to the hospital Tara literally had to lift me out of the car and half carry me into the A and E.

As we walked in there was a woman unconscious on the floor by the check in machines, a guy in his prison tracksuit handcuffed to two wardens. Tara was checking me in as I began stepping from one foot to the other again, shaking, squeezing my hands, the machine didn’t work, so we had to go the receptionist…who seemed to be one of the most uncaring people I had ever met. I was clearly distressed and she could clearly care less. We checked in and sat down, as a man handcuffed at the front with blood all over his face and hands walked in with two police officers and had the same issues with the check in machine as we just did.

Luckily we didn’t have to wait to long till we were seen by the triage nurse. I was still finding it difficult to talk and explained to her that I hadn’t been talking my Lupus meds and that’s what will have caused this, as I am quite run down at the moment, and I began to cry. She, fair enough, looked quite confused as to why I was so upset and panicked, as with my history I had dealt with issues from my illnesses and had been in plenty of hospitals. She asked if there was anything else bothering me and through tears I begged her not to keep me in hospital, I said I just cant stay, I really don’t want to be admitted as it always starts with just one over night so I can see a doctor in the morning then its two days, then three. She said she would do her best but she did want me to go to the eye hospital section of the hospital for them to look at it but she would be happy to give me antibiotics and an antibiotic eye cream and I could go home. Then Tara held my hand and said, her son died a few weeks ago and this is the first time she has been to a hospital since. The nurse went through the usual sorry’s and said she understands now why I’m as upset as I am and she would do her best to get me seen quickly so we could get back home. As we sat back down in the waiting room Tara looked at me and said she was sorry for telling the nurse but could see that I couldn’t say it and it did need to be said, I love Tara, I am lucky to have a family connection to her through our children, she is a wonderful person…and she was right, I know I needed to say it to be able to explain fully to the nurse what was going on but there was no way I could have said those words.

William was ready for bed by the time we got back, I was exhausted. I got into Tara’s bed and didn’t get out much till Wednesday. Tara drove William on Tuesday morning to school and my mum picked him up after, he stayed with my mum and dad and as always while he is there he was well looked after and very happy. The antibiotics, eye cream and rest worked and the ulcer was near enough gone by Thursday, I drove home and slept most of Friday. Mum woke me up bringing William home after school. I know how lucky I am to have the family I do, but I still just want Jamie.

Anne

2 thoughts on “Lupus is Winning

  1. This blog has taken my breath away multiple times. You’re amazing and so much stronger than I think you may realise. I am so sorry for everything you are going through and I will be checking back here for new posts.

    1. I will be posting Monday, Wednesday and Friday unless like now its a school holiday unless I have help with William and time to write or there is something extra a post. Thank you for your kind words and support and I hope you and others share the blog too. Thank you x

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