Tag: Chronic Illness

Bad Medicine.

Back in April the internet was blessed with this little anecdote about a woman who has suffered from migraines since her teenage years. Experience taught her to react to the signs of an oncoming migraine & take her prescribed painkillers before it fully took hold, & providing she did this, she didn’t suffer the symptoms any more. Her boyfriend, having never seen one of these migraines as she always nipped them in the bud, decided that she no longer suffered from migraines. He got it into his head that she had some kind of psychological dependence on her drugs.

One night, when staying over at his place, she felt a migraine coming on. She went for her painkillers but couldn’t find them, so crawled to bed in a vague attempt to sleep it off. It wasn’t until several hours had passed that her boyfriend admitted he’d taken her medication to prove that she no longer had migraines, & only returned it to her after having seen her struggle for several hours. He was, apparently, remorseful.

Words cannot sum up how angry I was after reading this post. I was appalled. Disgusted. Enraged.

Those of us who suffer from invisible chronic illnesses such as migraines, fibromyalgia, or ME, or mental illnesses like depression & anxiety, are constantly being told that we don’t need the medicines prescribed to us by a doctor. In fact, many of us have great difficulty accessing the medication in the first place, so the thought of it being swiped away by some know-it-all with a homeopathic kale enema is beyond terrifying.

Even if it transpired that we didn’t need the medication, removing it completely without warning is straight-up dangerous. Many medicines require a weaning-off period where the dose is gradually reduced. For conditions like asthma & allergies, removal of the medication could easily result in death.

Even those who work in the medical profession themselves seem not to understand the need to nip symptoms in the bud before they escalate. When staying in hospital multiple nurses seemingly objected to the volume of pills I was taking. One temporary prescription I had been given the week before was even removed without my knowledge, let alone consent, & once the pain had escalated beyond control the doctor refused to come to the ward or give me anything to help, claiming without having seen me that I was faking it.

If even inside a hospital, our access to effective medication cannot be depended upon, it is no wonder so many of us guard our medicines so fiercely. They are often kept under lock & key, & it is rare that we let anyone but those who we trust most anywhere near them.

Had Jarred ever tried to wean me off the medication on the pre-tense that I don’t need it, & all I really need is spinach & happy vibes, the relationship would have been destroyed right there & then. Every day I trust him not to meddle with my medication, & after reading this anecdote I realised that I take his reliability for granted.

Unless you are a doctor with knowledge of the patient’s medical history, illness, & prescriptions, you are in no position to make these decisions. Even then you need to listen to the patient, and properly address any concerns they have. No one knows a patient’s illness better than the patient themselves, yet often our needs go ignored.

Think. You wouldn’t take away an ex-smoker’s nicotine patches because you’d never seen them smoke, & you wouldn’t take away a cancer patient’s chemotherapy because it’s essentially a deadly concoction of poisons & therefore you believe it won’t do any good. If you want someone with a chronic illness to trust you, you must prove that you can be trusted.

An Unconventional Medicine.

The difficulty in knowing how to deal with poor mental health is the fact that everyone’s case is very individual; everyone has different triggers, responses, and coping mechanisms. For me, my strongest coping mechanism is to write.

Writing about an upsetting situation helps me think about it logically and clearly. Converting emotions into words forces me to think through what happened stage by stage and piece together which bits are the most problematic. Watching the words appear on the screen in front of me helps me rationalise my reactions, allowing me to adopt the perspective of the reader reflecting on the choices of a character in a book. I don’t necessarily publish what I write in response to a tricky scenario either, although sometimes a passage will grow and develop into something I’m comfortable with others reading.

I picked up on this technique when I was having frequent accessibility issues at a building I used on a daily basis while at university, which despite my feedback and advice continued to occur, becoming increasingly frustrating as the months passed. Often I would come out of the building trying to hide the fact that my cheeks were flushed and I was shaking with anger, so nonchalant and disinterested was the response of the members of staff. I took to keeping a record of accessibility issues, when and where they occurred, and if possible who was responsible for an issue. About once a week I would submit this alongside an email reiterating my frustration to a more senior member of staff, but when that didn’t have an effect I took it to the highest level of management. The problem lingered but lessened significantly, and on my more recent visits I haven’t had any difficulties at all.

What I noticed was that keeping a record and writing an email about the incidents greatly helped calm me down, and while still annoyed and aware of the problem, I wasn’t fixated or brooding about it constantly. I decided I’d try this technique with other problematic scenarios, and was surprised to find out just how effective it was. The many issues I had faced at school concerning a lack of both physical and emotional support formed two blog posts, and my Twitter followers are bombarded with photographs of blocked access routes as I come across them. I found that while my memories of these cases are far from positive, I didn’t revisit these memories as regularly as I once did, and overall I simply felt happier. It worked.

If you want to try writing as a coping mechanism for difficult situations, it’s important to remember that no one ever has to see it. Computer files can erased, and paper can be shredded. It doesn’t need to be coherent, grammatically correct, or full or delicate vocabulary. It won’t work for everyone but it did for me, and it helped me put together something I feel truly proud of. Writing is my therapy.

Big City Nights: Part 2.

Tuesday:

Tuesday morning was bright but cold as we headed towards the Thames. The London traffic was in full force & I could have sworn that we were moving faster than most of the cars. We crossed the river getting an excellent view of the Shard & St Paul’s as we did so, before heading down into a underpass. We re-emerged close to the foot of the London Eye.

The ticket hall was chaos. It didn’t help that the wheelchair access was down the side & made you go against the flow of traffic. Fortunately, we had pre-booked so only had to collect our tickets for later that afternoon before heading outside again.

A few doors down was a Sea Life centre, & with plenty of time to kill we decided to pay it a visit. With a couple of school trips taking place it was crowded at points, but we still managed to negotiate our way around without too many problems. My love of biology once again shone through as we meandered past tanks & through tunnels, with one rather large tiger shark seeming to take particular interest in the strange contraption I was riding.

A large tiger shark.
A mixture of jellyfish.

A couple of hours later we resurfaced & headed to a nearby fish & chip shop, the irony of which was not lost on us. On the door we were asked to perform a surprise miracle, as apparently the wheelchair posed some kind of health & safety threat, but fortunately the manager spotted what was happening & dealt with it, giving the member of staff some of the most evil side-eye I had ever seen.

After a short stroll along the South Bank, including excellent views of the Houses of Parliament, it was time to get on the London Eye.

The Palace of Westminster as seen from the South Bank of the River Thames.

We arrived 15 minutes early as requested & waited for the member of staff who would be escorting us to arrive. No one showed up. When we asked a passing member of staff he seemed to have a panic about the wheelchair & needing a ramp, which we had all arranged beforehand, & suddenly disappeared off. Finally, someone arrived & we were escorted to the wheel.

I am proud to say that I am one of the few people the London Eye has actually stopped moving for, allowing staff to lay down the ramp so I could safely board. I parked myself at the end of the carriage as it filled with the small group who had booked VIP tickets like us, & discovered that the mystery panic-and-disappear man was the waiter who would be serving us champagne.

The wheel moved off & the lovely couple next to us took some photos of us, while I returned the favour for them.

My husband & I high above the London Skyline on the wheel, drinking champagne.
Lacking the champagne.

All too soon we were back on solid ground making our way back to the hotel, where we rested before heading back out for a meal.

Wednesday:

We woke up to the sound of rain pattering against the windows. After breakfast we returned to the tube station, this time hopping on the Circle Line to Hammersmith, not a line we had used before. It was by far the most accessible tube line I had seen, with the platform being level with the carriage at almost every station.

We emerged from Hammersmith & made our way towards Shepherd’s Bush market, grateful that the rain had thinned to a drizzle, stopping at an authentic Thai buffet on the way. The market itself was ridiculously accessible, with kerb drops left clear & ramps provided, & I wasn’t the only wheelchair user there.

After perusing the market we headed to a local cinema to see Fighting With My Family; we had been to a wrestling earlier in the week so it seemed fitting. While the film focussed on the little emo girl from Norwich, I particularly enjoyed the cameos from Dave Mastiff, Big Show, & Shaemus.

The cinema tickets for Fighting with my Family.

Before returning to the hotel we had one last place we wanted to visit, The Loading Bar (Server) which can be found near the market. This video game themed pub was not only accessible & welcoming, but just so happens to be the place where some of our favourite YouTubers go to film their livestreams. To be sat in the place we had seen on our TV screen so often was rather strange, but we soon settled into a game of Exploding Kittens (yes, that is a real game) over some cocktails. I can recommend the Assassin’s Mead.

The Assassin's Mead, accompanied by 2 chocalte coins.

It was raining as we returned to the tube station but the ride was just long enough to have dried before we headed back out into the rain again. We were grateful for the warmth of the hotel when we returned.

Thursday:

Upon waking up the next morning we were happy to discover no evidence of rain, & the promise of a bright day ahead. I took my time getting ready, pinning my hair into a nice style, & applying subtle but stylish make-up. We ventured out shortly before lunchtime, making our way through St George’s Gardens (the graveyard) & Russell Square, past the British Museum, & into Treadwell’s Occult bookshop.

Not only was the shop one of the only accessible one’s on the street but I was grateful not to find myself at the centre of an impromptu healing ritual, with the salesman letting us peruse the shelves at our leisure. Jarred said that if anything “spoke to me” or “leapt off the shelf at me” we should consider buying it, at which point I informed him that this being an occult shop, if anything did speak to me or leap off the shelf, I would make a hasty exit. Eventually we did have to make a somewhat hasty exit, as the incense was triggering my asthma.

We meandered through the West End, stopping to look in any shops that caught our eye, & made our way to the crowded Trafalgar square. Opposite the square was St Martin’s, the fully accessible crypt of which turned out to be a café.

The Cafe in the Crypt: a large vault with a stone floor, & massive pillars & arches supporting the church above.
Nelson perched atop his column in Trafalgar square.

After lunch and a quick peruse of some of the art in the National Gallery, where I proved to be an uncultured swine, we headed back into the West End. Around the corner we came to our destination; Her Majesty’s Theatre.

Upon showing our tickets for Phantom of the Opera to the member of staff outside, we were ushered into the stalls via a side entrance. As we went to our seats the disabled toilet was pointed out to us, & because the aisle was a ramp instead of steps, I could go all the way to my seat before getting into a theatre seat. My wheelchair was stored safely to one side as the rest of the audience filed in. It wasn’t long before the show began.

Inside Her Majesty's Theatre, before the show began.

The show was truly a spectacle to behold, akin to nothing I had seen before. By the time it ended a chandelier had been dropped above the audience, & we had been close enough to feel the heat of the pyrotechnics. Still buzzing from the excitement, we went for a meal, returning to a pub from earlier in the week & returning to our common people lifestyle.

Friday:

The week had flown by & now it was time to pack. We checked out of our hotel & hopped back on the tube for one last trip, heading back to Victoria train station. We browsed a couple of the shops & ate lunch there before heading to the coach station, & soon it was London we were leaving behind.

I spent the journey looking through the photographs, wishing I could do it all again. However, it was still good to see the Leeds skyline ahead of us & to know we were nearly home.

A Legitimate TED-Talk.

Disclaimer: I wrote this a couple of months ago before I had even been offered the opportunity to deliver a TEDx talk, & it was scheduled for release at the time of writing. Therefore the timing of the post is purely coincidental!

Anyone under the age of 35 has probably been lectured about how technology is sucking out our souls through our eye sockets and we’re only one grammatical error away from Skynet doing its thing. Some of us will even have received the lecture via social media, the irony of the matter being lost entirely on the person posting their expressive art about technology’s role in the destruction of humanity online. Technology gives us cancer, and big corporations use it to brainwash us into buying their products, and we’re losing the ability to socialise properly, and it’s making us paranoid etc.

Technology is not all bad. How many lives have been saved because instead of having to find the nearest phone box, someone could call an ambulance at the scene? How much more data can scientific studies collect and analyse for even better results? How many people have received earlier diagnoses of progressive diseases that would have just killed them before? How much progress would have been made in the fight against ableism if disabled people didn’t have technology to help them voice their concerns?

Chances are that even the most disabled among us can still use technology. New apps and programs become available all the time that read out loud to the visually impaired, or translate between English and sign language for the deaf, or give someone who is unable to speak a voice. Social media has allowed people with the same disabilities from across the globe to connect to each other, so even the most isolated patients can find others like them and support each other.

Cameras are very useful for providing physical evidence of discrimination such as blocked access routes, and also the abuse we can receive when asking people not to block access. Once posted online the rest of the world can finally see for themselves the difficulties disabled people face in their day-to-day lives. Sometimes it can even result in legal action.

Perhaps most significantly of all it can be extremely difficult to organise a demonstration against ableism due to poor access to transport, and the fact that all of the affordable hotels in the area will only have one accessible room apiece, which will be quickly booked up. Technology has instead allowed us to break the taboo around disability and discuss it properly, highlighting and resolving issues, and raising awareness of the fact that we are also humans.

Nor can disabled people easily sue for discrimination due to the difficulties in finding employment due to access and transport issues, and also because many courts lack wheelchair access, even going so far as a have steps up to the witness box. Technology has allowed us to shame ableist actions to the point where public outcry has forced government leaders to tackle the issue.

Technology does have its drawbacks, but the truth of the matter is that technology has helped to improve more lives than it’s ruined. There was a point in history when reading and writing was considered unnecessary technology, but now those abilities are almost sacred to us. How much of technophobia is actually due to a genuine fear of technology, and how much of it is simply a fear of change?

 

You Are What You Eat.

Given my passion for my chosen field of academic study (nutrition, if you didn’t know) you should probably be relieved that up until this point I have managed to resist to urge to write about what I eat. Today that all comes crumbling down (ooh, crumble).

The complexity of the relationship between diet and health cannot be overstated, but is only made more complicated once disease has to be considered. Throw in multiple diseases and suddenly you need a degree to figure it all out. Fortunately, I just so happen to have one.

My primary consideration when it comes to food is actually fat intake, due to the fact that all the way back in February 2017 someone stole my gall bladder. The gall bladder stores bile and pours it into the small intestine when food is detected in the gut. Fat absorption is increased as a result. Without a gall bladder bile simply drips into the gut continuously, regardless of the presence or absence of food. When it comes to meals the bile excretion doesn’t change and the ability to absorb fats from meals therefore reduces. Simply and grossly put, if the fat isn’t absorbed it leaves the intestines via another route in something called steatorrhoea. If you are in any way squeamish, for the love of god DO NOT GOOGLE WHAT THAT IS.

After this I need to assess my fibre intake. Colorectal cancer runs in the family, and the constant dripping of bile into the intestine after the gall bladder is removed irritates the gut wall, increasing the risk of developing the cancer even more. CFS can also result in constipation which is alleviated by fibre, as the use of painkillers and decreased exercise levels both demote bathroom business.

My next consideration is maintaining energy levels throughout the day. Consuming complex carbohydrates like bread, pasta, oats, rice etc. provides energy over a longer time period, and caffeine and sugar can be used to give me instant boosts when my energy levels drop. I also don’t want to consume too many calories as without exercise extra calories simply get stored as fat, causing a gain in weight.

Minor considerations include vitamin and mineral intakes as these are all involved in the normal energy metabolism and immune responses, and also the consumption of isoflavones from soya which may reduce the risk of breast cancer, a disease which also runs in the family.

This all sounds very complicated to create a diet that meets all of these needs, so to demonstrate what this looks like, I’ve recorded what I eat on an average day.

6 am: caffeinated coffee and cereal with skimmed milk (to keep fat intake low).

7 am: another coffee with a little skimmed milk in.

9 am: either coffee or tea, again with skimmed milk.

11 am: either coffee or tea, skimmed milk.

12.30 pm: lunchtime! Coffee with skimmed milk, a sandwich on white bread (white flour is fortified with additional nutrients, whereas wholemeal bread has more fibre, but compounds in the fibre reduce the absorption of nutrients), an apple, a handful of grapes, and a low fat yogurt.

2 pm: tea or coffee with skimmed milk, a couple of biscuits.

4 pm: tea or coffee with skimmed milk.

5.30 pm: tea or coffee with skimmed milk.

7 pm: decaffeinated tea with skimmed milk.

9 pm: carbonated water, main meal (example: Stir fty with instant noodles, sauce, poultry, a red onion, pepper, courgette, and frozen sweetcorn. The soy sauce contains isoflavones, and the frozen sweetcorn is richer in nutrients than fresh sweetcorn as nutrients are “locked in” when frozen), dessert (cake, sometimes with ice cream or custard).

10 pm: decaffeinated tea with skimmed milk.

Without access to some of the resources I used on my degree it’s difficult to give a precise calorie count but this comes to between 1,600 and 1,800 kcal per day. The occasional glasses of wine would bump this up to 2,000 kcal. Before you panic and say I eat too little, please remember that I have extremely low levels of activity and therefore simply don’t need the calories!

The management of my diet enables me to maintain relatively steady energy levels throughout the day, which is particularly important at work, and also keeps me from developing the very unpleasant side effects that come from gall bladder removal. At the same time my diet is by no means bland, is interesting and varied, and includes some typically unhealthy foods. Consumption of unhealthy foods in moderation can be part of a healthy diet, and I don’t spend my entire life eating what looks like next doors hedge.

And now that I’ve written this, I’m hungry…

Take the Shot.

If there had been a vaccination for the strain of meningitis I contracted in 2011, chances are I would never have developed chronic fatigue syndrome. Luckily for you, I fell ill and then decided to whinge about it, calling it entertainment.

Vaccinations are a contentious topic in the court of public opinion all thanks to a scientist who wanted some extra pocket money. The scientific community are very familiar with publication bias; papers that show no correlation or have a null hypothesis are far less likely to be published. After all, medical journals are still a commercial enterprise and need to make money, and no one wants to buy a book where nothing happens. So the scientist forged some data to give the false conclusion that the MMR vaccine resulted in autism, and the world reacted with its usual level-headed reasoning abilities. Even if this were the case, measles, mumps, or rubella have deadly consequences, whereas autism is at least manageable with the right support despite its difficulty.

However, there is a debate surrounding vaccinations that is much closer to home for me, and that is the association between CFS and vaccinations. Vaccinations make people who already have CFS feel horrendous, which I can confirm from personal experience. I get a flu jab every year, and for the next 48 hours or so I will feel like Jupiter’s gravity is emanating from my chest and I also have an elephant sat on me. However, developing the actual flu would be significantly worse, leaving me incapacitated for several weeks at best, or at worst, dead. Therefore I consider the flu jab worth it.

The real question is whether CFS can be triggered following a vaccination. Having scoured the internet the vast majority of scientific evidence that I can access suggests that there is no correlation between the two, and given that CFS is often triggered by a severe viral infection, vaccinations may even offer some protection against CFS. However, there are also abundant case reports of people developing CFS out of the blue, and it has been noted that in these cases, a vaccination has usually been given a short time before.

Given that we know so little about CFS, it’s causes, and it’s biochemistry, there is no definitive way for researchers to establish a connection between vaccinations and CFS. For all we know there could be undiscovered associations with air pollution, food poisoning, or physical injuries. Vaccinations are constantly in the media and the forefront of our minds, making them the first conclusion that is all too easy to jump to. I remain extremely sceptical, however, as having studied the biochemistry of vaccinations as part of my degree, I simply cannot align inoculations and diseases like CFS.

It is also worth mentioning at this point that CFS, while a brutal disease that can even prove fatal, places far less immediate danger on the patient than meningitis, measles, mumps, rubella, poliomyelitis, and even influenza. Sometimes in life we have to balance the risks, and take the lesser of two evils. Take the shot.