By Monday morning (day 5) I had almost run out of pain medication. I started to panic. Although the pain was incessant, the codeine and Paracetamol did help to take the edge off slightly. Mum asked a friend to come around and sit with me, while she went to the accident and emergency department to pick me up some much needed pain relief. Aashbir is such a wonderful friend and I have known her since I was three. Her and her family have helped me a lot through the course of my 4 years treatment. It is true what they say… when things get tough, you find out who your true friends are. They have always been there for me and I could never thank them enough for what they have done for me and my family through our 21 years of friendship.
Aash came to sit with me in the bedroom and we watched the Incredibles on TV. She made me laugh so much. When I smiled or laughed it really hurt my face but I could not help it. When I smiled I could feel the stitches pulling inside my mouth and was really worried it might rip open and bleed. But thankfully it did not. My boyfriend was around the corner at his parents’ house (a 2 minute drive away), but was too busy sorting himself out to look after me for a couple of hours.
Mum had called the local hospital and one of the doctors was going to give me some dissolvable codeine with Paracetamol (also titled co-codamol). This meant that I would need less syringes for medication and I would not have the nasty taste of pure codeine in my mouth. Mum took with her, my discharge letter to the hospital. They then gave her some more medication to get us through until Thursday. That way we could make a doctor’s appointment and get some more if we needed it.
I had not slept for more than 15 minutes a day since Thursday when I had had my operation. But I was optimistic that within a few days the pain levels would start to decrease and I would be able to get some sleep. When I first got home from hospital it was really difficult to get comfortable. My neck, shoulders and back were in a lot of pain and my head felt really heavy. I could not hold it up. Mum tried to sit me on the sofa with some pillows but that was uncomfortable. Then I tried lying down in bed but that put too much pressure on my face. Each time I had to get up I had to have someone to hold my neck and head as I was unable to lift it up myself. I have been told that this is very rare but again this is something that is not discussed in the possible risks of the operation. Eventually, I was semi comfortable siting up with 6 pillows behind me. I also asked my boyfriend to buy me a v shaped pillow from Argos to help me to sit up in bed. I was constantly using small bags of frozen peas to reduce the swelling and ease the pain. Mum would put the frozen peas into pillowcases and tie them around the back of my head and place them down the side of my face. The nurses told me to do this for the first few days. I carried on using the ice packs for the swelling for several months after the surgery. Normally just before I would go to bed I would use an ice pack for 10 minutes and then fall to sleep with a heat pack around my lower jaw and neck. Once my bones were fixed enough I really enjoyed being able to use the heat packs.
At this point in recovery, I was unable to move much, was very dizzy, had to have help lifting anything and needed assistance with bathing and going to the toilet. I was taking pain relief every 4 hours and was taking antibiotics 2x a day. The antibiotic I had, they do not recommend in liquid form as it is so vile tasting. The smell of the medication was so strong it was seeping out of my skin, alongside the anaesthetic smell. I remember heaving and being close to tears on a few occasions with the taste of the antibiotics. I would rush mum to syringe as much water into my mouth after having my meds. Because I had little feeling in my face and lips it was easier for mum to syringe my water, juice and medication into my mouth quickly. I would wrap an old towel around my top half like a bib and have a large plastic bowl on my lap to catch any drips or liquid. We found the best place to do it was sitting on top of a closed toilet lid. Then we could wash out the syringes as we needed them. I preferred really cold water to drink with my medication as it was more refreshing and it seemed to make the taste go away more quickly. This continued for a few months as my recovery was slow and quite lengthy.