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.

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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.

Posted in Chronic illness

“How are you?”

It’s a question most of us ask or are asked multiple times a day. Usually there’s a simple “fine, you?” Reply and that’s all that’s needed. 

As a person with chronic illness, this question isn’t so easy to answer. Most people don’t really want to know my honest answer. That I’m actually doing pretty shit. 

But the people I’m closest to- my boyfriend, my sister and my mum. They regularly ask how I am and expect the truth. 

But the truth is hard to hear and I’m never quite sure what answer I should give. Should I be positive and say that I’m doing better than yesterday? What if I’m actually doing worse? What if I’m really struggling to be positive?

I don’t always want a conversation about how I need to stay positive. I don’t always need reminders that it changes everyday and just to try and get through today. I already know that stuff. But that doesn’t stop the pain I’m experiencing right now. And sometimes (a lot of the time) I just don’t want to talk about it.

But if I can’t be honest with them, who am I being honest with? And if I’m not honest with them, how do I expect them to understand when I do need to talk about it?

How did a simple question become so difficult to answer?
This post was inspired by this.

Posted in Thoughts

If I could…

If I could vanish one thing. If I could make one thing disappear from the world, what would it be?

It’s a question that’s appeared on Facebook a lot of times. And there’s many great answers. HIV. Cancer. Donald Trump. ISIS.

My thoughts on this question and questions like it such as ‘if I had one wish’, ‘if I had £1million’, ‘if I had one superpower’ is how to make it go as far as possible. How can I have the most impact?

For example, getting rid of Donald Trump will likely have a bigger impact than getting rid of that irritating neighbour.

So I have a few possible answers for this question.

1) Illness- This would cover all chronic illnesses, both mental and physical. And it would also cover that dreaded winter cold. Everyone would be fit for work all year round as well so there would also be positive impact on the economy.

2) corruption- This would wipe out a lot of politicians and we would know that the ones left have our best interests at heart. I believe it would also bring an end to a lot of wars and to ISIS. 

3) environmental problems- Global warming, droughts causing lack of food, pollution of seas, melting ice caps. Everything would be brought back to where it should be in one go.

4) inequality- this would bring an end to homophobia, racism, sexism, transphobia, ableism. All the isms. And we would all be economically equal, ending hunger and poverty.

If I was really given the choice, I would not be able to resist choosing illness. I have a chronic illness and I would be selfish and choose illness, though the other options are all good too.

This is entirely hypothetical as no one ever has the opportunity to actually make something like this vanish. But the question of ‘how can I make the most impact?’ Should be something we all think about more. And I’m as guilty of this as anyone else. 

Every minute, we have choices as to how we can make an impact. On the world, or on ourselves. Maybe the biggest impact you can make one minute is choosing the stairs instead of the lift and getting some exercise. But maybe another minute you will decide to learn something new instead of watching tv. And maybe another minute you will give up your job as a doctor to move countries and work providing healthcare to people living in poverty.

Every minute we can make an impact on our futures and we should be thinking about how to make the most impact. Is watching that new game of thrones episode going to have more of an impact than practising guitar?

What would you vanish? And how can you make the most impact?
This post was inspired by this.

Posted in Creativity

Creative block

Nothing is inspiring me to write. Nothing is motivating me to write. Either working on my novel, writing short stories or writing poetry. I’ve drawn a blank.

And I’m also struggling to find motivation to play keyboard, ukulele or guitar.

It’s not your typical writing block that can be pushed through. It’s a symptom of a wider problem.

Depression.

I know being creative will help me through the depression but the depression is stopping me from being creative. It’s a vicious cycle and I’m getting nowhere.

This post isn’t how to fix depression or how to fix writers block. It’s simply an acknowledgement that it’s happening.

Posted in Popular culture, TV

Gilmore girls reboot review

*beware:spoilers*

Let me start by saying that I loved the bits that didn’t make me uncomfortable, (they were funny and brought back every character I could think of from the originals) but there were too many uncomfortable parts for me to rewatch it. I’m considering rewatching the original series to see whether they were as problematic and I was just oblivious when I was younger. In fact, this series was so problematic, I’m going to need subtitles.

Fat shaming

The most obvious problem, that anyone could spot, was the fat-shaming. The summer episode has a few scenes at the pool. Lorelai and Rory are making comments about disliking the pool (because kids pee in it). When fat people walk past in swimsuits, one of them says ‘belly alert’ and they look away. At another point, pat stops to talk to them and Rory accidentally calls him ‘fat’ instead of ‘pat’. They are further dehumanised by having the heads of the fat people off screen, so you can only see their bodies- even when pat is talking to them. The scene is completely unnecessary and has no effect on the storyline at all, so it’s even more surprising that no one said anything about the fat shaming and got the scene cut.

Child labour

Also during the pool scene, and a few other scenes, Lorelai and Rory have two children waiting on them. Now if the children had been shown going up to them and asking if they could do anything for some money, and then getting paid a decent amount of money, then it might be okay. But the kids are clearly unhappy about the work they’re doing (they walk past children playing and one of them says ‘that looks fun’ sounding quite downbeat). They’re also made to carry a lot of stuff that looks heavy, while Lorelai and Rory carry nothing. And Lorelai and Rory mostly ignore them. Child labour? I’m not sure.

Homophobia

Now there’s two gay characters in the show, which is improvement on the original series if I remember correctly. Michel that works at the dragonfly inn, and one man that lives in the town and is at town meetings. During a scene discussing the possibility of a pride parade, they talk about there not being enough gay people in the village and wanting to borrow gays from other villages. I have two problems with this- they’re talking about gay people as if they are some kind of commodity, and they completely ignore the other letters in LGBTQIA+. I also think showing Michel as gay just reinforces stereotypes of gay people because he is the perfect gay stereotype. But having a black, gay character is some kind of progress I guess…

Racism

Most of the characters are white, which is a problem itself. For speaking characters there’s Michel, Lane and her mother, Gypsy and Berta and a few minor roles who are people of colour. There’s an okayish amount of non-speaking parts played by people of colour. One problem that stands out is that there’s a lot of people of colour in servitude roles. From Emily’s maid and her family, to the headmaster at chiltern’s secretary, to Paris’ secretary, to Emily’s driver. Emily’s gardener and pool boy are also mentioned as translating languages for Emily so we assume they are also people of colour (or maybe they just care about people other than themselves unlike anyone else on the show so have learnt second languages). 

Looking at the more prominent roles, Mrs Kim is still a stereotypical first generation Asian immigrant. Lane doesn’t have much of a role but it seems she has become Americanised as she always wanted in the original series. Gypsy has a name that is a racial slur, but doesn’t have much of a role in the show. Berta is laughed at. It seems like it’s her problem to get past the language barrier, when it should equally be up to Emily. Berta has a huge family, and Emily doesn’t bother to learn the names of the family calling some of them ‘the cousins’. The jokes at the expense of Berta and the language barrier are in very bad taste.

And then there’s Michel. His accent is laughed at when another character complains they’re unable to understand him. He’s not the stereotypical black person, but he is the stereotypical French person (sticking to stereotypes is a recurring theme in this show). He has a proper storyline- he might be leaving the dragonfly inn, unless Lorelai expands the business, which she eventually does. But we never find out for definite whether that means he’s staying afterall. It was a bit like ‘he has a storyline but we aren’t going to finish his story because he’s not actually that important’. I’ve read that there was an ending to his storyline but it got cut because the show was too long. I don’t understand why that got cut and the fat shaming scene didn’t.

Mental health

I think Emily does a good portrayal of grief. But the therapy sessions are ridiculous. The therapist doesn’t seem to do anything. She doesn’t ask any questions to prompt discussions. She just takes notes. I’ve had therapy and that wasn’t anything like my experience. Lorelai’s attitude towards therapy isn’t great at first, but that seems to change. But then she ditches her therapist, all because her therapist auditions for the town musical, as if therapists can’t have a life outside of their job. No mention of actual mental health problems are made. None of the characters have mental health problems it seems. Sookie is ridiculed for taking some time for self care. And the worst part is a joke about a woman with bipolar disorder. 

Classism and financial privilege

Lorelai and Rory have always been portrayed as if they are working class and not wanting to accept money off Emily (and previously Richard). But they are at least upper middle class if they can afford to spend so much in coffee shops. The price of flights between America and London is never addressed. Where is Rory getting the money? And one of Rory’s rich friends buying an entire bar and a car while drunk is treated as a cute quirk, not as a disregard for the value of money. Emily buys a house that isn’t for sale by making an offer the owners couldn’t refuse. And a loan for thousands of pounds isn’t treated as a big deal. But what really got to me was the 30-somethings group. A group of friends who are all living back with their parents because they are unemployed. The fact that so many people are unable to find work and afford to live on their own isn’t addressed as a very sad part of the society we live in. No. They are laughed at. As are their parents trying to help them find work. Moving back in with your parents in your 30s because you can’t afford to live independently is reality for a lot of people, and they use it as a joke.

Invisibility

One good point is that there’s only one bit of ableism in the show- the joke about the bipolar woman already mentioned. There’s no other ableism. Now of course, this might be because there are no disabled characters. There’s also no transgender characters or bisexual characters or asexual characters or Jewish characters or Muslim characters. In fact religion isn’t mentioned at all apart from lorelai and Luke having a priest perform their wedding. There’s a lot of society’s diversity that is completely invisible in the series.

Treatment of surrogacy

The way they looked at surrogacy was obviously going to be a little ridiculous just because they’re dealing with Paris but they went too far. Again, money comes up. Or rather it should do. Getting a surrogate is expensive but it’s treated like something anyone can have, rather than addressing the fact that it’s actually expensive- and how are Luke and Lorelai going to afford it? And Paris refers to the surrogates as breeders, and ranks some of them as being better than others. I don’t know how to put into words the problems of this. I was shocked. 

Other gripes

My other gripes with the show are more about the storylines not being what I expected. Lorelai and Rory have always been self centred but Rory is a a horrible person in this series- she’s cheating on her boyfriend who she keeps forgetting to break up with and she’s also a mistress to someone who’s engaged. And then she seems hurt by the fact that Logan still wants to marry his fiancé. She also has a really bad work ethic and expects to get places just on talent and intelligence.

The Wild storyline just didn’t make sense to me. Lorelai isn’t an outdoor person. If she needed alone time to think, I would expect her to go to a spa, not on a hike.  

Lorelai and Luke getting married was also a bit like ‘what the hell?’ for me. They were having issues in their relationship and not communicating. Yet they suddenly get married and that’s supposed to fix everything. Marriage does not fix relationships.

And my final problem that has already been mentioned is that there’s no end to some storylines, particularly Michel story that I’ve already mentioned but also the letter that Lorelai supposedly wrote to Emily, which seemed like a big deal in that scene but then was never spoken about again. 

Finally

This is one of those series, that if I was the writer, I would have scrapped most of the script.