I have been very quiet recently and there is a reason , honestly I think this illness is getting worse a lot worse.
Over the last few months the exhaustion has just been so much more it is really scary .
I have been having paralysis of arms or legs for a while now and I have been so out of it , so a few weeks ago my Hubby comes home from work and as always he comes up to our room to give me a kiss Hello unfortunately for me having tv on while I am resting or sleeping is not unusual. Hubby gave me a kiss and went downstairs to make his tea , I could hear all of this but every single part of my body was completely paralysed. I tried to speak but I couldn’t I was absolutely aware of everything that was going on around me , I hadn’t been asleep and woke up in a dream like state . I had been lying down watching TV and not long before I had been speaking to my daughter. I was terrified but I couldn’t shout out to tell anyone something was really wrong , Seriously wrong . Hubby had made his tea , eaten it and came up to me still lay in the exact same position but with tears no sound just tears. He was asking me what was up but I couldn’t speak obviously he started stressing , eventually I was able to make sound and finally got to say can’t move, that was all I could get out. This whole thing went on for at least 45 minutes , Hubby was able to rub and move all my muscles until I got the feeling back . It was like when you have pin and needles and you can’t feel your arm or leg properly except I hadn’t had any pins or needles and this happened to my whole body and included my speech.
I didn’t want to go to the hospital, I was terrified. It is really hard being in a hospital when you can’t move about anyway so imagine if it happened again and I was left for hours with no one noticing , I must have a side room when I am taken into hospital because of this silly bug in my tummy which I am sure I will write about soon if I haven’t already done so. I was able to get a relatively normal range of motion back , well normal for me..
Since that day my left arm has been getting more concerning , I have a condition in both hands called De Quervains syndrome which is a tightening of the tendon in your wrist. It gives me lots of problems and I have to wear hand braces as well as steroid injection directly into the wrist to help. However my left arm is almost like a burden to me right now , it doesn’t feel like it belongs to my body , it doesn’t respond to directions. Something else which scares me.
Anyways the hospital visit . As I have mentioned I felt off for a long time leading up to it . I had chills , nausea , disorientation when I stood. I woke on the Saturday morning feeling rough my tummy felt off , nausea again and a lovely appearance from my friend diarrhea , if you are eating please stop before reading on . I had a lot of pain in my sternum it was a stabbing pain , this still makes me want to vomit just thinking about it , when I burped the smell was the same as what was coming from the other end . Now I have this awful fear of being sick , if I get the feeling that I am going to vomit I will run my wrists under ice cold water and splash cold water on my face as well as inhaling pure lemongrass essential oil from a tissue to take away the feeling of nausea. So I am sat on the toilet with my arms in the sink filled with cold water not knowing what or where something was going to come from next and the pain was building .
I already take a lot of medication so I have a little rule that if the hospital is going to admit me to monitor me with the same medication I take at home I do not call for an ambulance no matter how bad the pain gets . This pain was kicking my arse !!! after the paralysis and everything else that I had suffered I knew I had to call an ambulance. Ambulance arrived quickly and because of the amount of pain I was in they injected mg of Morphine straight away and with no improvement a further 5mg and that was just in the ambulance. Morphine was not even touching this pain. So they put me on a drip to get fluids back into me , my blood pressure was low nothing was touching this pain . So x Ray and they found by bowel was dilated.
I was admitted onto the surgical ward and after settling me in I insisted that my Husband needed to go home and get some rest . The surgeon came to my room at about 1:50am to inform me they had an emergency and as soon as he could he would come back to me . I couldn’t sleep as the pain was so bad so I put my headphones on and tried to use a distraction technique, it just allows me to focus on something instead of the pain it is a great way to help manage pain and has helped me a lot . I also use a TENS machine to essentially do the same thing , I put the TENS machine on a relatively low setting to allow me some type of break I guess ??? I must say that this does not take the pain away , think about if a child falls people do one of 2 things they either poor baby poor baby let me cuddle you to take the pain away or you distract them in some way , like saying silly floor and hitting the floor , it’s just a distraction so that is my crazy explanation anyway. So it gets to 4 am ish and the surgeon comes back and says he wants to fit an NG tube and catheters me . ERM NO ! . He explained that by fitting the tube they could feed me and take samples of my stomach acids when they needed to but it would also give my bowel a rest. Still a big NO from me , I can’t do things going down my throat I have enough problems swallowing my medication most days. So he advise me to think about it but I would need to speak to the boss who would be around later .
I was sent for a CT scan that afternoon and all I wanted was to be at home , the head of the department looked at all of my results and as the gas pattern was ok they were happy to play a wait and see game . I hate being in hospital and after explaining all of this to the head of the department and as I was no longer an emergency for them I begged them to let me go home .
So that is where I am . I am due to be back at the hospital on Thursday but unfortunately I think I am going to have to cancel . The surgeon told me that they feared that a cyst had burst on top of everything else , so dilated bowel on top of everything else which is making the strangest noises , thankfully I don’t have the fowl taste and smell anymore .
I have to mention Aintree Hospital who every single time I am admitted they are excellent . I understand that not everyone has positive experiences with hospitals but I have never had a bad experience thankfully and I am there a lot !
I do have a hospital bag all packed and ready which I do believe makes things easier for me , silly things like thick socks , headphones , hand cream, lip barm and I always have a copy of my full prescription so that the pharmacy has everything they need straight away without having to get my Dr to confirm things like my controlled drugs .
Thats been my life recently and hopefully it gives you a warts and all look and reasons for my lack of content . One day soon I will be able to write more and hopefully increase the frequency too.
Thats all from me . If you have taken the time to read this I thank you sincerely. I would love to hear from you and what you have been up to .
Living with any illness is lonely and I hope that by sharing my life and all that comes with it that it breaks down the awkwardness that some people feel when talking about it .
See you soon
love
Alisha x x