Posted in Chronic illness, Thoughts

Depression

The colonoscopy didn’t happen. I had to take medication as a bowel prep. I drank 100ml of it (out of 2000ml) and started being violently sick. Now it has to be rescheduled with a different prep medication.

I’m just so fed up of one thing after another going wrong. Everything is making my depression worse. I’m having suicidal thoughts, though I’m not acting on them yet. My doctor has upped my antidepressant and referred me back to a therapist.

Sometimes it seems like the darkness will never end.

Posted in Chronic illness

Consultants and colonoscopies

I saw the consultant recently. He’s a gastroenterologist. And he’s pretty sure that the digestive problems I’ve been having are Crohn’s disease. But he wants to do a colonoscopy (last time was just a sigmoidoscopy) to check my colon fully.

I’m dreading it.

I’m not that bothered about the procedure itself, which will be on Thursday. It’s the diet beforehand that’s got me worried. I have to do a low fibre diet from three days beforehand. And for 24 hours before I have to starve myself.

I feel weak and dizzy if my dinner is just an hour or two late. So a whole day without food is going to make me feel terrible and there’s no way around it.

I need the colonoscopy. I need to know the full extent of what’s going on with my body. But I just wish I could skip forward in time for a week and have it over and done with.

And then there’s the diagnosis. Crohn’s disease. It’s treatable, which is better than my other illnesses (chronic fatigue syndrome, fibromyalgia, chronic migraines), but it’s still chronic. It’s something I’m going to have to live with for the rest of my life.

I had really been hoping it was just a temporary problem. Something they could quickly treat and it would all be over.

Crohn’s disease also affects other parts of the body besides the colon, and I’ve not fully looked into what it covers. But I’m scared.

Sorry it’s not a more hopeful happy post today, but I just needed to get my feelings out. Wish me luck with the colonoscopy!

Posted in Chronic illness

Like a broken smartphone

Imagine you have a smartphone. It’s battered and bruised, covered in dents and deep scratches so you keep it in a cover so no one can see because you’re ashamed of how broken it is. The battery is faulty. You charge it overnight and on rare occasions you will wake up to 100% battery and a working phone, but other times it can have as little as 15% and you can never know in advance how much it is going to charge. You have to survive the day on barely any battery. You can try to charge it during the day but you can’t use it while it’s on charge. 

At other times, you can be using it, just a quick check of emails, and suddenly the battery has dropped from a decent 60% to less than 30% for no reason.

When the battery is low, other faults start showing up. Sometimes the screen goes fuzzy and you have to wait for it to fix itself. Sometimes the apps move around the home screen so you can’t find them. Sometimes the memory thinks it’s full when it isn’t so you can’t do anything that adds new information. There’s lots of glitches and you never know when a glitch is going to appear. Sometimes it freezes for long periods of time with no warning. The tech guys can’t fix it and you can’t just buy a new phone.

Now imagine that phone was your body.

That’s what it’s like to live with a chronic illness.

Posted in Thoughts

Easter and chocolate 

I saw a video the other day of a young girl asking why she gets so much chocolate at Easter, Christmas, birthdays and Halloween, yet the rest of the year is told chocolate is bad for you and you shouldn’t eat too much.

I find it difficult to maintain a stable weight around Easter because there’s so much chocolate that is only in the shops during Easter. Because it’s not available the rest of the year, I find it difficult to eat sensibly because I know there’s a limit imposed by the shops. After Easter I won’t be able to eat mini eggs because they won’t be sold anymore. 

There’s no special Christmas or Halloween chocolate that I particularly enjoy that isn’t available all year so I don’t have the same problem at other times of year but Easter is always difficult. It’s like one long chocolate binge. 

And I know other people have the same problem.

But it’s nearly over now. I just have to eat up what’s left in the cupboard and there will be no Easter chocolate left by the next time I go to the shops. But the guilt is there still. Partly it’s related to the fact I know chocolate is bad for me nutritionally. Partly it’s societal pressure to eat well and maintain a good body, something I’m particularly struggling with this year as I’m on steroids which are making me gain weight. And partly it’s because I have a history of an eating disorder.

But soon it will be over. I’m looking forward to it being over. I want it finished with so that it’s easier to eat healthily. I want it over so I feel more in control of what I’m eating.

It’s odd to look forward to a holiday, enjoying the extra time with family, but also wanting it to be over and done with as quickly as possible. It’s the only holiday I have this problem with.

Here’s to a better Easter next year.

Posted in Thoughts

Sexism in law enforcement 

Today I was scrolling  through BBC news and I found a news article that made me feel quite sick.

A man has been sentenced to 18 months in prison for beating his wife with a cricket bat and forcing her to drink bleach. Firstly, 18 months is nowhere near long enough for such extreme domestic abuse.

But what made me feel sick was this was a resentencing. At first, he wasn’t given any time in prison, because he had claimed that he had a contract to play professional cricket. He was resentenced after it came to light that that was a lie. There was no contract. But if there had been a contract, he would have affectingly ‘got away with it’ all because he had a ‘bright future’ ahead of him.

I know these things happen. Men’s futures are put ahead of the harm they have done to women. But they had done it so brazenly. They hadn’t made any excuse about why he shouldn’t have gone to prison. They made it quite clear that it was because of the cricket contract. 

I’ve always thought judges did this because the men were young and they convinced themselves that the men didn’t understand the consequences of their actions. In this case, the man is 33. He’s definitely old enough to understand that his actions would effect his future. A man of 18 should also understand this in my opinion but I could understand a judge thinking they were too young.

This news article has sickened me. It’s really shocked me into realising just how disturbing the sexism is in our society, just how widespread and ingrained it is, because of how brazenly the judge did this.

Sometimes I feel like we will never get rid of sexism. Sometimes I feel like giving up hope. That is one of those times.

Posted in Books, Popular culture

13 reasons why

My health has been particularly bad the last few days and I’ve not been up to much except disappearing into a book. I love to disappear into books and experience a whole new world to forget about my own for a while. But this week (well actually just yesterday, I read the whole thing in a day because I was too ill to do anything else), I read 13 reasons why by Jay Asher.

Warning: this post contains spoilers

I kind of enjoyed it. But it wasn’t great. It didn’t seem like a real portrayal of mental illness. The premise of the book is that the main character has received 13 audio tapes and each one contains a reason/person why Hannah Baker (who recorded the tapes before she died) killed herself.

It seems like a great way of telling the story of suicide. But I don’t think the word depression was mentioned once in the book. I expected a realisation at the end that people don’t kill themselves over other people or for any particular reason. It’s mental illness. The reason is depression and nothing more. If Hannah was not suffering from depression, those things would not have led to suicide. And I’m talking from the experience of someone who has attempted suicide. 

The story is good but the ending is a let down and it’s not just a let down to the rest of the story. It’s a let down to everyone that’s experienced suicidal thoughts. Those things may have pushed Hannah over the edge but they did not cause her suicide. 

This book has taught me once again (twilight did it first) that just because a book is being adapted to tv or film, doesn’t mean it’s any good.

Posted in Chronic illness

Friendship and sickness

It’s difficult to keep friends when you have a chronic illness. It’s just as difficult to explain that to other people.

People think they would never abandon a friend who was sick. Until they have a friend whose sick. Most people don’t intend to abandon you, but after you’ve said you can’t make it for the tenth time in a run, people stop asking you to meet up, and then you just gradually drift apart.

I understand that it’s hard having a friend whose sick but it’s even harder being the one who is sick. Having friends abandon you during your time of need just adds to the pain.

My circle of friends is very small after being sick for 12 years but it’s made me appreciate the friends I do have. And I think it’s made me a better friend. I don’t let petty things get in the way of our friendship because I know the ones that are there for me are real friends and I appreciate them all the more.

Posted in Chronic illness

Where have I been?

I’ve been away from the blog for a few months. It’s been because of the health problems I’ve been having. On top of my fibromyalgia and chronic fatigue syndrome, my digestive system got really messed up. I may have wrote about it before but they suspect ulcerative colitis.

I have had a flexible sigmoidoscopy. They found colitis and im waiting on biopsy results to find the cause of the colitis. 

In the mean time, I’ve been put on steroids amongst some other meds. Which means weight gain.

Being ill has also left me with terrible skin, hair and nails so I’m all round gross looking at the moment.

But my health is slowly improving, and I’m managing to do things again. 

Which means back to blogging. 

Regular posts will be back soon.

Posted in Chronic illness

A difficult christmas

Christmas Day didn’t start well for me. I vomited. But I was still determined to enjoy the day.

I grew up spending every Christmas with my grandparents and this time of year is always a reminder that they aren’t here anymore. This is the first Christmas I didn’t cry over missing them.

Instead I cried over other things.

I opened all my presents and then promptly forgot what I had been given. Caused by a mixture of brain fog and being overwhelmed with how much I had got. My family don’t go way over the top but I get overwhelmed easily.

After being shown again what I had got, I still forgot again.

Then I was shown again. I forgot again and started crying. About my lack of memory.

My sister tried to cheer me up and said ‘people liked their presents though didn’t they?’

My response was ‘I don’t know’.

My memory has really failed me today and I started crying even more. My sister joined in the crying.

My mum came to distract us and I stopped crying. My presents have been put to one side so I can go through them a few more times since I still can’t remember what I’ve got properly. I know I got a new hot water bottle because I’ve been using it. And I know I got a heated blanket because I’ve been using that too. But everything else I got is pretty much a blank. 

Soon after this happened, when I was still feeling emotional, my mum asked who wanted what veg with dinner. Tears welled up again. I want to eat all the veg we have available, even brussel sprouts. But with the undiagnosed mess that’s going on in my digestive system, I just can’t do that.

Other than the vomiting and brain fog, I’ve also had exhaustion from very disturbed sleep, muscle twitches, tingling, my normal constant pain, two episodes on the toilet with my digestive system,  muscle cramps, itching, blurred vision, dizziness and headaches. And it’s only 6pm.

I haven’t written this to complain about having a bad Christmas. I’ve actually had a really good Christmas and enjoyed spending time with my family. I just wanted to remind people that chronic illness doesn’t ever take a day off.

Posted in Chronic illness

Dear NHS hospital

I know you’re understaffed. I get that it’s a problem and things don’t get done as fast as you would like because there’s just not the people to do it. I appreciate that you don’t charge me and that my healthcare is entirely free. But if I don’t complain, how will you know where the problems are?

I have a chronic illness- ME, fibromyalgia, chronic migraines. And I went to A and E on Saturday night. For me to give in and go to A and E, the place I hate most in the world is a big deal but in fact I suggested it. I didn’t even have to be pursuaded by mum. At half past midnight on a Sunday morning just before Christmas. I’m starting at the beginning though the bigger problems come towards the end. 

I was screaming in pain from abdominal pain. As such, I quickly got taken through for blood tests and into the area with hospital beds. A patient screaming in a waiting room just doesn’t look good. 

Then was problem one- they got my patient details wrong. Mistakes are made though so no big deal. It was quickly rectified. 

Then was problem two- they tried to do something on the computer to get my blood tests logged and an update was being done on the computer. Again, this is something that needs to be done so no big deal. The bigger problem was that staff hadn’t been told this update was happening. It wasn’t hitting all computers at once so another one could be used. But time was wasted trying to work out the problem.  

I had my blood tests done and got taken through to the back rather than put back in the waiting room. I then didn’t see anyone for an hour but I had been warned waiting times were long, so I expected that.

Problem three- at one point a nurse came in to take blood tests, which I had already had. She had got the wrong patient. Mistakes are made so no big deal but this is the second mistake so far. 

At this point I was lying on a hard gurney. The proper hospital beds are much more comfortable, and by the time I was put on a proper hospital beds there was several available. I have ME and fibromyalgia. I was crying in pain from those conditions and screaming when they took my blood pressure or whenever anyone touched me. It would have been much appreciated if they could have got me into a proper hospital bed sooner. But they’re busy so I get it. 

Problem 3.5 (I’d forgotten this one and I can’t be bothered changing the numbers)- there were no pillows in A and E, which they’ve had in the past when I’ve been there. Lots of people are there overnight. Having basics like pillows seems an easy way to make people more comfortable and maybe able to get some sleep.

Problem number 4- at around 4am I was given painkillers. I couldn’t have taken them any earlier because I had taken some shortly before I arrived. I was given paracetamol and buscopan. Now I’m normally on codeine, so unsurprisingly, the paracetamol and buscopan didn’t do much.

Problem number 5- the paracetamol was given through a drip, apparently to make it more effective. The drip wasn’t set up properly and was only corrected after I had had x rays and was asked if it had been turned off for the x ray. Mistakes are made sometimes but this is mistake number three so far.

I wasn’t told what was going on for most of the time I was there. But I was given an examination by an A and E doctor and was sent for a stomach x ray in the early hours of the morning. 

Problem number 6- during the examination, my mum asked me if I wanted her to leave the room. The doctor replied that it wasn’t necessary yet (as in I wasn’t taking my clothes off yet), but still it is up to me whether my mum leaves the room or not as I’m 24 years old. The doctor shouldn’t be answering for me.

After the x ray, I got put on fluids. I took this to mean that I still wasn’t allowed to eat or drink anything. 

Problem number 7- the fluids IV wasn’t put on properly. It was supposed to be an 8 hour bag. It was put on about 6am and when I had it taken out at 1pm (after 7 hours), it had only gone down about one quarter according to the markings on the bag. During the 7 hours I had it on, it was fiddled with several times by nurses when we kept saying it wasn’t going down. 

After the IV bag got put on, I saw a medic doctor that had come down from the wards. She told me I was going to be admitted. And this led me to becoming hysterical after she left. I have a fear of people touching me and was thinking ‘how much more can I take?’. I was also exhausted and in a lot of pain and just wanted to go home to sleep. I was close to having a panic attack.

Problem 8- the A and E doctor came back to calm me down. She wasn’t actually reassuring in any way but told me it was important I stayed at the hospital because I had an infection in my bowel, which could become serious if I went home. And that I probably had ulcerative colitis. The consultant later told me that I don’t have an infection and there’s a chance I might have ulcerative colitis but it’s not likely. The news I had an infection and probable ulcerative colitis was not presented as a medical opinion or a ‘we think it’s this…’ but as if it was a diagnosis. This terrified me and actually made my anxiety worse.

Shortly after this, there was shift change and I got a new nurse. She moved me to a hospital bed, ready to go up to the ward, and it was much comfier though I was already in a lot of pain so it didn’t make a huge difference.

Problem number 9- when I sat on the hospital bed I got wet and it seemed the bed hadn’t been dried properly after cleaning it before the sheet was put on. Again, I understand that mistakes happen sometimes but there’s seeming to be a lot of them. 

During all this time, I kept asking whether I was allowed to eat or drink yet as I was feeling sick and needed to eat. I kept being told by nurses that they would check for me and they never got back to me.

Problem number 10- when breakfast went round, I told the breakfast person that I didn’t think I was allowed to eat. She went and checked for me and quickly came back to say that I was. How long was I left not eating when I could have been eating? And more importantly if they were worried about my fluids, how long was I left not drinking when I could have been drinking?

At some point during this I was eventually allowed to take my codeine medication. 

Problem 11- I got taken up to the ward and there was no drip stand. The entire time I was in the ward (several hours), my drip was attached to the bottom of the tv with a plastic glove. 

Problem 12- I was asked questions and told I would have to do mrsa swabs and the nurse would be back in 20 minutes to do the swabs. The swabs didn’t actually get done for a couple of hours. If I wasn’t expecting her to come back any minute, I would have tried to get some sleep.

We waited for the consultant to come and do his rounds.

Problem 13- while waiting, some doctors came to see the patient in the bed next to me. She was mostly deaf and you had to shout to talk to her so I heard much of their conversation. The patient was Austrian and a young person who was following the doctor was half German and half Austrian. As the doctors walked away, just as they were going past the end of my bed, one of them said they can’t stand the Austrian accent. Both racist and rude. Disrespectful to the student, and to the patient if her hearing was good enough to hear the comment. 

The consultant eventually came round and was brilliant. He suggested a medication I could have and said I could be discharged to take the medication at home. 

While I was waiting to be discharged I kept asking when my medications were due, as I was in a lot of pain and I felt like it might have been the necessary four hours. The nurses kept not getting back to me with the information.

Problem 14- after two hours of asking, a nurse finally told me when my medications were due. She told me I had taken the codeine between 7am and 9am. For such a strong medication that can easily be overdosed on, why didn’t they know the exact time? We checked the time of other meds and I was told they didn’t have the exact details from A and E, even though the A and E nurse had handed over all of my notes and they were in the same hospital! By the time I found this out it was after 1pm so I could take more anyway but I was annoyed that they hadn’t correctly noted down the time I had taken my meds. These meds are incredibly important to me as someone with a chronic pain condition and at home I write down the precise time and often count down the last few minutes until I can take more. They clearly had no understanding of ME and fibromyalgia.

Problem 15- while waiting to find out my medication times, the pharmacist came to see me. She couldn’t give me the medication that the consultant had said because that could only be prescribed by the specialist. She suggested another medication which I unwillingly agreed to. It turns out after taking one dose of that medication, that it’s not suitable for me. It can cause muscle twitches which I already have and were made more severe by the medication. When looking at the leaflet, there are several conditions I fulfil under the ‘do not take if’ section. Therefore, along with the twitching  side effects, I am not happy taking the medication with only a pharmacist having said it’s okay, not a specialist. Fortunately my specialist appointment is on the 21st (10 days after the hospital visit) as it was already booked weeks ago.

The specialist appointment was supposed to be a rapid referral after my last A and E visit and was supposed to take 2-3 weeks until my appointment, and it’s actually going to be 7 weeks. It’s not at the same hospital but it’s under the same commissioner.

When I finally got discharged, my cannula was taken out of my arm by a nurse.

Problem 16- she wasn’t very gentle with it, not properly removing the sticky before pulling out the needle, and honestly I could have done a better job myself.