What has been going on? I am going to try and be as straight to the point as possible in an attempt to give everyone an informative update, whilst doing my best to write something more 'Chloe style' tomorrow! So...
Feeding
My TPN (nutrition that goes straight into my blood stream) has increased in volume whilst giving me the same amount of calories in an attempt to combat my extremely low blood pressure that occurs at night time. I have been having regular blood pressures of 60's/30's which causes great concern to everyone as it becomes extremely hard to wake me. They began to give me bags of fluid on rapid infusion which was bringing my blood pressure up- so as a precaution I am now given some extra fluid to try and combat the symptoms before they happen. Although this doesn't always work, and I end up having rapid fluid infusions anyway.
I am still continuing to try my hardest to get back to tolerating enteral feeding. This is where I am fed liquid nutrition that goes straight into the tube surgically placed in my bowel. Although it has improved since I last updated, I still have a very long way to go with no idea how to get there. I am reaching my limits already, so how on earth am I supposed to deal with almost ten times as much as I am having already?! I have a plan to attempt next week to get there, as sometimes I find it easier to follow a strict plan, rather that 'going with the flow', because really- why would I put myself through the pain and nausea/sickness of feeds if I have nothing pushing me to do so? I have made the plan myself, so it feels somewhat realistic and not totally impossible. The feed I now have is completely different to the generic one I was on before. Instead it is a specialised feed that is designed for people with severe allergies and motility problems. Somehow it is partially digested when it is made, so my body has to do a lot less work. It also shouldn't cause so many Mast Cell reactions in my gut as it is extremely 'gentle' and known to be good for severe allergies. I must admit it has helped me go further with the volume, but I really do feel like I have hit a brick wall now.
Because of the amount I am being sick currently I have had a temporary drainage tube put into my stomach via my nose. If this works the plan is to then give me a surgically placed PEG that will be another tube in my tummy, to drain my stomach. This is a huge relief, as you know being sick itself makes you feel awful.
Chronic Fatigue
My sleep pattern is all over the place! Sometimes I am exhausted yet unable to sleep, whilst other times (like I did this week) I sleep for a ridiculous amount of hours, the record being 28-30 hours! I literally woke up to go to the toilet in this time and about an hour lying in bed, but still I was unable to stay awake. This is incredibly debilitating for me, as it is impossible to make any concrete plans as I never know what I will be like the next day. It is like there is a blanket over my brain making everything muffled so hard to understand and stones on my eyelids weighing them down. I never wake up feeling refreshed and sometimes it is hard to know when to go to sleep because realistically I am always tired so if I listened to my body I would never be awake!
Pain
I am currently on very little pain relief for my physical pain and although I don't often show it, I am in great discomfort most of the time, from head to toe. I would like this to be sorted but unfortunately think it will be something that will have to wait until I get home. The pain management team I have seen here have been incredibly useless to be honest, and I would be better of sorting it out myself rather than asking for their advice! It is like my joints are burning and my muscles/nerves are being ripped and torn constantly. As much as I want to do things, I can only reach the limits my pain sets which on some days is very low, although others can be a little better. Sometimes I wonder if I will ever be 'pain free'?
Mobility
No changes here, I am still totally reliant on my wheelchair, and due to my wrists being very temperamental at times I am struggling to transfer alone as well. I am wearing splints on my wrists and ankles to try and combat the problems my joints are causing. Although the wrist splints help me when I am self propelling my chair, they don't help me to transfer (when I need them most) so I still need assistance. I still have a slight loss of sensation in my bottom half and I usual feel more pain rather than someones touch. I am getting good at maneuvers and wheelies though! Sometimes you have to make fun out of a dark situation.
Mood
Right now I am finding it difficult to ever see an end to all this and that is what I find gets me down. I want to be at home so badly, but also know just how much everybody else wants it too.That makes me feel even worse because I just can't see how I am ever going to achieve what needs to be done, it is no way realistic in my eyes. I am still finding my anxiety levels are quite high, but I am a lot more confident spending time on my own at the hospital, knowing Mum is still on the end of the phone if I need her. I am spending a lot of time working on different projects to keep my mind active, as it is when I have too much spare time on my hands that my thoughts get the better of me.
Once again I am extremely tired and cannot keep my eyes open. Time for sleep and then I will continue!
So much love to you all xx
