Another day in my life….

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Today was a bit of a shiter, I had the district nurses out last night to give me diamorphine thanks to my lovely GP who prescribed me it over the phone for my gallbladder issues. I got to spend a few blissful hours pain free for the first time since I had been discharged, this morning was so so, I had the house to myself for a few hours and watched some rubbish day time TV then tried to doze for an hour but the kittens were being noisy and I kept waking up.

After I gave up napping the pain started to appear again I also had the issue that I hadn’t been well enough to pick up my prescription for my AD’s and beta blockers so my mood was becoming viler and my anxiety was through the roof. I was worrying about being well enough to walk to pick the kids up as the BFG had my car and was caught up taking someone to the hospital. I needed my meds asap!!

The BFG eventually got back, I got the meds, the kids were home but boy the pain was wicked! The problem is I’ve tried most painkillers, at the moment I’m on DHC, paracetamol, mebeverine for pain then I have tramadol but I’ve to try not to mix them all, even when I do it doesn’t take all the pain away, the most I get it “taking the edge” off it. If I don’t get my scan results tomorrow I’m phoning the hospital again. I’m in as much pain as I was when I was admitted and discharged, I’ve thought a couple of times of getting re-admitted but I’ve lost faith in the medical profession, Perhaps it was just the ward I was in but I don’t want to go through that again, which reminds me I need to finish off my complaint letter.

So I’ve been given flucloxicillian for my kidney infection, which is most likely a result of dehydration and/or vomitting, just another bloody pill to add to the pile.

I don’t know how I “cope” with everything, do I ? What would not coping be ? People are always saying how well I’m doing and other comment saying I couldn’t do that, I couldn’t live with that, but what choice do I have, because if there is a way to get out or give up other than suicide please do tell me ? I’m not strong or amazing or great, I’m screaming away inside as my stomach feels like it has hot pokers being stabbed into it and twisted.

And strangely enough as I’ve been typing this the BFF has texted me saying how proud she is of me dealing with all this pain and pushing through the hard bits, she knows me so well, she ever said I know you think others don’t get it but she does (she has back pain troubles) I guess I’m only dealing with it till I find another option…

 

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6 months pregnant ? No….Gastroparesis

 

This is what happens to my stomach when I eat, the above picture is 20 minutes after eating a small child size bowl of soup 😦

I’ve had digestive problems since I was a teenager and diagnosed with IBS, always more on the C side :O After I had the youngest child 5 years ago things went downhill, due to old style antidepressants they put me on because I was breastfeeding I put on 3.5 stone in A MONTH! I also sat like a zombie staring in to space most of the day, needless to say I came off them pretty quickly!

I’ve never lost the weight again and over the past year I have had lots of new symptoms such as heartburn, acid relux, cramps etc. Then this strange pain started on the right side too which landed me in hospital last month, they thought it was gallstones at first then ruled that out so did an endoscopy which showed the delayed gastric emptying (I had fasted for 14 hours and still had food in my stomach!) and a high degree of bilary reflux from the duodenum. They said this didn’t explain the pain I was in on the right hand side and didn’t give me much information on gastroparesis apart from telling me to avoid fat and fibre and started me on domperidone to increase the motility in my stomach.

So back to the hospital it was last week for the HIDA scan to check the function of my gallbladder, I’m not sure when I will find out the results, I don’t see my surgeon until January but see my GP on Monday, to be honest I’m not that worried about the pain on the right side now, it is sore when it happens but at least if it is my gallbladder then it can come out.

I just don’t know if and when I will be able to tolerate solid food again, I’ve been living off complan meal replacement drinks and yoghurts, I’ve lost about 18lbs in the past 2 weeks which is great as I have plenty to loose! but I have no energy most of the time and feel rotten. My GP suggested fitting an NG tube but I feel it’s way too soon for that kind of measure, but if I can’t even have a small bowl of soup then what chance have I got 😦

Pain

I am currently in a lot of pain, I am reaching my limit to when i start to become delirious, I am already crabby and if anyone else was in the house I would be snapping and swearing at them just now.

Chronic severe pain is deliberating, imagine a headache for instance, you take some painkillers and usually feel better, but what would you do if they didn’t help, the pain just got worse and it was still there the next day and the day after and after that….

Between my back problems my stomach problems and now my gallbladder problems it’s been rare that I’ve had a day in the last year that I’ve not been in pain. Occasionally there are days where the pain is at a lesser “normal” level.

But how would you cope if pain was crippling your life, stopping you from carrying out your day to day activities, preventing you from leading a normal life, seeing your friends, going to work, what would you do if it got to the level where you needed help to look after yourself.

You would “cope” because there is no other choice, I don’t feel like I cope, people tell me I am a strong person but I don’t feel strong, I feel weak and worthless and a disappointment.

If you don’t already suffer from mental health problems your more than likely going too, it will be very hard for your friends to understand the impact pain has on your life until they have experienced this for themselves.

If your lucky you will have good friends who will come to visit you and help you out, but there will be many who simply forget about you, stop inviting you to parties or nights out because you’ve had to say no so many times before, little do they know that it’s the thought that counts or that there may just be that one night where you could come and it would do you the world of good. They don’t do it on purpose it’s simply the way the human mind works sadly.

Many people will feel like they are hitting their head off a brick wall with their Dr or hospital, pain is a hard thing to describe, throbbing, stabbing, achy etc can describe the type of pain but there no way for Dr’s to measure the severity of the pain apart from your word.

Sometimes I am made to feel like a wimp, then I have a think about it, i gave birth to 3 children naturally, 2 of them being inductions with a hormone drip to make the contractions harder with just gas and air, I do have a high pain tolerance, so if I say it’s 10/10 then it is 10/10!

People who live with chronic pain and illness have little positivity in their lives at times, so the next time you are having a party or a social gathering please don’t skip past there people, they probably won’t be able to come but the fact that you still thought about them and invited them regardless can do wonders for their self esteem and moral.

I shall end it on that note as I go in search of some alternative form of pain relief as I’ve maxed out on all pharmacological medicines for today .Image

HIDA Scan

So this morning I went for a HIDA scan due to my recent stomach problems, like most people would I read up on it a little bit before hand, but not too much as the internet can be full of scare stories etc.

The first part of the scan where they inject you with the radioactive isotope was fine, slightly uncomfortable lying on a tiny “tray” for an hour but otherwise ok, oh and the nurse put on Jeremy Kyle to keep me amused, a programme I never watch but if someone else puts it on I can get drawn into it 😉

After the hour was up the nurse gave me the most vile drink on earth, she did warn me it was gross, it was meant to taste of strawberry but was more like smelly feet, the consistency was gloopy and oily, she said years ago at the old hospital they used to give out bacon rolls or Mars bars lol, So back under the scanner to see if my gallbladder would empty efficiently and that’s when the nausea & pain began.

At first it was just crampy but by the time we took a break I felt like it was a full on attack. I asked if this was normal, they said if that’s how I would react to a fatty meal then it’s normal as it’s the only way they can check my gallbladders efficiency.  I’ve not ate a meal for weeks but that  was the similar throbbing in the abdomen and stabby shoulder pain, deferred pain is a funny thing!

So at the end she said my gallbladder had partially emptied into my small intestine but was still quite full so it will probably be bye bye gallbladder but it will be up to the surgeon and what he takes from the report.

The rest of the day has been spent in doped up pain, I’ve taken everything I can, I feel woozy but still have the pain, I’ve reached the “take me to the hospital now” point a few times but my experience from my last admission has kept me here.

When I started my nursing course I felt young and healthy, now I feel old and ill and very much the patient. I have to take 28 tablets a day to keep me alive, some of the physicians I’ve met don’t think about this when adding in new meds, luckily my GP is good with my medications management and takes me off anything I can do without.

Hopefully tomorrow will be a healthier day, I knew it was bad today when I didn’t enjoy my Starbucks and actually wanted to stay off as opposed to fighting the sick line.

Maybe tomorrow….