Saturday, 15 November 2014
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.
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!
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'?
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.
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
Monday, 20 October 2014
|I am so thankful I was able to go to Phils surprise birthday party, thank you to all those who looked after me!|
|A picture I took last autumn, hopefully I will be able to take many more soon :) |
|Christmas last year- this is roughly when I began to feel more unwell. |
Tuesday, 7 October 2014
Monday, 6 October 2014
This morning I slept through seeing the doctors, but I do not mind because I trust my Mum and her judgement in asking the right questions and relaying back everything I need to know. My consultant is happy with how I am doing, but I can't help feel disheartened. She is never here when I have to take my medication down my JEJ tube and I don't think she quite appreciates quite how much is hurts and how poorly it makes me. I can understand why, but sometimes I wish she was HERE when I was going through it so she could see the agony and sickness and discomfort with her own two eyes. That way she might not be be so pushy- for want of a better word.
Wednesday, 1 October 2014
Is she just being honest?
Does she care?
Does she believe me?
Is she another person that is going to blame the present on the past?
Before my questions could be answered she was gone.
That was the consultant, the big boss of the gastroenterology team.
And to be honest? I didn't know what to make of her. She woke me up which is something I find hard anyway as I go into such a deep sleep It takes me a little while to wake up. Then she started talking straight away. I tried to take in what she was saying, but I just couldn't! My brain hurt.
I felt like she was doubting me. "Your case is very rare you know?" "You certainly are complicated." I felt like saying "just because an illness is rare, it doesn't mean it doesn't happen to people." But I bit my tongue, smiled politely and in my head desperately willed her to leave.
Luckily she didn't stay long. I just wish I'd of had someone with me, to check that I'm not over reacting in the situation. To stick up for me and protect me. Words hurt just a much as actions sometimes! Sometimes when it is your health and your life on the line, you need a mediator. Communicating is hard hard work.
Health wise nothing has changed. I have started having some medication down my JEJ and oh dear it is the most painful thing I have had to deal with. But I need to stick with it, because if it helps me in the long run it is totally worth it! It is totally worth the pain if it means I can be stable enough to go home again :)
Home is ultimately where I want to be. I don't care about anything else and it is all I can think about right now. I want my comfort and the safety of my animals. I want my family to be whole again! I know it will happen, just maybe not for a while. Patience has never been a strong point of mine!
Grandma is here with me today, we are making a scrapbook :) I love a bit of cutting and sticking to take my mind off everything! Then I think I will do some painting and just keep 'doing'. Whilst i'm 'doing' i'm not thinking!
Friday, 26 September 2014
How long is this all going to go on for? What is the end result? waking up daily with the same question, is today the day it will all end? It's extremely difficult being here day and night and not really seeing any significant change, especially a positive one. Watching the pain and suffering, being helpless as a mum to do anything but say, 'it'll be ok, everything's going to be ok'. Am I lying? Should I actually say it'll be ok when honestly I don't know!
So what has happened this week, dilemmas, that's for sure! Having to make the one difficult decision, to start a medication that can only be given through a jej that causes unbearable pain and twice a day, so how do you cope with the pain that this is going to cause, well in Chloe's case with her tolerance to pain it means high dose iv morphine and paracetamol together with high dose buscapan, buprenorphine, her butrans patches and a lot of will power deep breathing and a pillow tucked tightly around your middle!!
Mast cell (mastocytosis). Is this the cause of the sudden reactions? Once again time and medication will tell. The not so funny thing is, Chloe said about this weeks ago after endless research on the internet and talking with friends who suffer similar reactions that only now this is being questioned!
Today Chloe has had to endure another trip to theatre, a replacement central line, a seemingly straight forward procedure, well perhaps for others but when you have a tolerance to local anaesthetic extremely painful!
Living on the ward is exhausting, constantly putting up with inexcusable mistakes by staff, watching friends we have made on the ward also go through pain, misdiagnosis and continuous let downs, calling home trying to be positive, missing the normality of day to day life, but for now this is home, this is the battle, this is where I will stay, by Chloe's side praying for a positive outcome. Thank you to those who daily message me with hope hugs and prayers, I am eternally grateful for your support.