Illegitimi Non Carborundum

(The lovely work of DolphinMoonCreations on Etsy.com)

I figured the NHS was a subject I would have to tackle eventually. Judging on those I’ve spoken to I don’t think I’m the only one maintaining a peculiar love-hate relationship with it as an organisation. Whilst I understand some of this will not be relevant to readers outside the UK, I do intend to round up with some general tips and tricks I’ve found beneficial which will hopefully be of use across the board.

So, why the love-hate? I think as with so many other things in life experiences with the NHS are all a matter of luck. My experience has been frustrating but I would say mostly positive – I know others who have not been so lucky. One of my ideas for this blog was to ask for guest posts, or links to posts elsewhere (I have a couple of friends with blogs of their own on here) about others experiences, so that will give a much wider appreciation of the NHS’s role in dealing with chronic illness.

The main negative I’ve come against is the utter lack of communication between the many parties I’ve ended up involved with. To say that the NHS has a central hub computer system, the right hand still spends a lot of time blissfully unaware of its left counterpart.

My road to getting diagnosed with Interstitial Cystitis best illustrates this, so I’ll put the Fibro aside for the present. I had several visits to hospital within a two month period last year and in the run of regular tests I showed up as having a UTI every single time – even straight after finishing a course of antibiotics. Five courses of increasingly strong antibiotics later and I still seemed to be the only one involved thinking there had to be something more to this than a particularly stubborn infection.

The key for me was that I had three actual UTIs in 2010, and this didn’t feel like those. It was certainly similar in some ways, but with enough difference for me to have my doubts in the constant “oh, it’s just a new infection” approach.

If a friend hadn’t made mention of an acquaintance of hers with Interstitial Cystitis, I think I’d still be on an ever-rolling course of antibiotics to this day. In doing some digging of my own on the internet (I don’t always recommend this approach, and I’ll elaborate further later in this post) I found a condition that in many ways behaved similarly to a UTI, but was in fact a different thing altogether and unresponsive to antibiotics. Bingo.

Armed with this, I made my next trip to the GUM clinic at Sheffield’s Royal Hallamshire Hospital and spoke to a specialist there, having become sick of my obstructive, deaf-to-all-but-the-simplest-answer GP surgery. After explaining the situation to the doctor on duty there, she immediately drew up a referral to Urology to send to my GP. Who promptly lost it.

To cut a somewhat angry and frustration-filled story short, it took me changing GP surgeries and raising the issue again before I finally got my referral to Urology. The new GP listened to me talk through the situation to date, and to my delight responded without argument and with a reassuring “don’t worry, we’ll find out what’s wrong.”

That particular story ends quickly and happily – Urology diagnosed me in five minutes flat with a mild case of IC, put me on a trial course of Amitriptyline and directed me to the IC Network website for dietary advice. I’m pleased to say it has caused very little problem since aside from the occasional flare up.

And so I come to my first more general point – if your GP isn’t listening, find one who does. I’m unsure if this transfers to other countries, but certainly in the UK you have the right to choose your GP. I cannot put enough emphasis on what changing surgeries did for me in terms of the road to diagnosis. The previous surgery I’ve gathered are a little indicative of the “old-school” – they don’t like patients telling them what they think is wrong or making suggestions, and it takes a sledgehammer to move them away from the assumption of the simplest, least costly option. Certainly there is no acceptance for the concept of “you know your own body”.

To my understanding, a GP should serve a gateway function in terms of accessing more specialist knowledge where needed.

Dealing with them was like facing up to Jörmungandr The Midgard Serpent as a guard dog.

(Amon Amarth's Twilight of the Thunder God
Who's a good doggy?) 

There’s a phrase which is popular amongst the CI blogging community, and that’s this one; being an advocate for your own health. I’m a firm believer that a good GP or specialist is a partner in your care – and if one half of the partnership isn’t pulling their weight, they need to be replaced. There are still things I feel patients can do too to ease the process too, however.

With long running conditions (particularly in the case of those which affect cognitive function) it can be difficult to remember what has been said previously, things which have already been tried or suggested and things as simple as whom you’ve seen before.

The best thing I’ve found is to keep a rough list with a rough chronology (mine is down to the month where I can’t remember a specific date) detailing who you’ve seen (GP, hospital department, specialist etc) and a rough gist of what was discussed and decided. Mine isn’t fantastic because I came to this idea quite late, but it’s a good thing to keep handy for when you need to see someone new.

Also keep a list of anything you’ve tried yourself, and how successful it was. If you have an appointment booked, make notes before you go about what you need to ask. It’s alarmingly easy to forget and get sidetracked once you’re in – you don’t want to have to go back twice to cover a point which could have been solved the first time.

An approach I’ve taken is to keep a symptom diary for specific things (I know, I can hear the groans from here). It seems to be the typical thing you are sent away with by a GP on your first attempt to raise a concern. But, if you keep a diary for a month and then take it to your appointment, you’ve beaten the first hurdle already and it’s much easier than trying to remember all the specifics yourself.

My new surgery in York are about to meet me for the first time tonight, and not in my most accommodating of moods. Calling me in regards to a repeat prescription request you’ve already cleared once (without looking at my notes) to ask why I’m taking my medication (...read the notes?) is not the most auspicious of starts.

Luckily for me (and unfortunately for them) I’m not the 20 year old who was still somewhat intimidated by doctors and specialists and did as she was told regardless of being quite sure it wouldn’t help. The one who didn’t argue or stand up for herself very much. The NHS and the chronic illness experience as a whole saw the back of her, in place of the rather more ballsy and self-assured 23 year old who knows much more about her body and what it needs. If it sounds like I’m spoiling for a fight without having walked through the doors yet...... well, when they called they didn’t know I had Fibromyalgia or IC at all. You can possibly see why.

Another experience of mine which helps illustrate the need for a co-operative GP was the period following my colonoscopy. Without going into horrendous detail, it was botched just about as badly as it could have been. Screaming, tears pain, etc. This left me with appalling internal pain for quite some time afterwards, and after collapsing unable to walk at home I ended up in A&E with a suspected ruptured bowel (thankfully not the case). The specialist there prescribed Tramadol as and when necessary until the internal trauma passed. Blissfully, it worked.

I made mention in For Freedom’s Sake that there were advantages to being 5’3” and tiny. There are disadvantages too... internal procedures illustrate a couple of them alarmingly well.

Anyway, I took this repeat prescription request to my GP surgery (albeit the old one) and this was refused on the grounds of “we don’t believe in using it.” Excuse me, what? All the relevant authorities clear it for use, a specialist who outranks you has requested it be prescribed and yet you “don’t believe in it”?

I’m an extremely peaceful person, but even I thought long and hard about sharp objects aimed in certain directions on that day!

I mentioned internet research and that I didn’t feel it was always a good idea. All I can really recommend is that everyone exercises caution and chooses their sources wisely. Wikipedia will have articles on most conditions – that doesn’t mean they’re going to be all that helpful.

(I make no apology - I love this thing!)

  

In my experience one of the best websites is Patient.co.uk– they give a good overview of symptoms, causes and treatments which strikes a good balance between information and fear-mongering. However, its key draw for me is the fact that medical professionals use and review it too. NHS Choices isn’t terrible, but it tends to list just three or four symptoms for each condition which are so painfully vague they could indicate anything from a poor night’s sleep to imminent expiration.

If you take nothing else away, for goodness sake stay away from Livestrong. Stick six inch red hot needles in your eyes instead. I guarantee it’ll be more productive and probably more fun too.

In short, things can be quite difficult enough without having to deal with obstructive medical professionals, and as many precautions as we can take for our own benefit there is no getting around that fact. Whilst it shouldn’t have to be, it is in some ways up to us to make sure we are listened to and can get the help we need.

If all else fails (fellow Malazan fans!), hire a sapper and make sure he’s armed with kittens.



Why I Talk About My Illness

This is actually a post made over on my Tumblr blog a week or so ago, but it had such a popular response I thought I'd put it in here too. It sums up what the message of this blog truly is and how I feel about the problems facing those who are ill. I hope it strikes the same chord here as it appears to have done over on Tumblr:

There’s a community online that a lot of people are unaware of, or willfully distance themselves from. We have a myriad of different problems but all identify together regardless. We’re the Spoonies – or for those unaware of The Spoon Theory and all it represents, we’re the chronically ill.

Chronic illness comes in all different shapes and sizes as with all aspects of life. You’ll no doubt have heard of some and possibly not others. The list to many of the spoonies is as familiar as the back of our own heat-therapied hands: Crohn’s Disease, Ulcerative Colitis, Fibromyalgia, Lupus (SLE), Ehlers Danlos Syndrome, Eczema and associated skin problems, Chronic Fatigue Syndrome, Interstitial Cystitis, ME..... All are different and yet they remain united by one crucial thing – the profound effect they have on the sufferer’s life.

I’m not writing this to talk about how much chronic conditions suck and I’m not here to moan.  I’m here to offer a perspective on why we talk about our problems as openly as we do, as it inevitably rubs plenty of people up the wrong way. I’m British, and we’re culturally supposed to maintain a stiff upper lip and not discuss anything problematic.

No matter how elegantly constructed and well-meaning the words, we always face the possibility of being accused of attention seeking, of begging for sympathy, of complaining too much. I would take an educated guess that not one person in the wider circles of those I interact with has yet to have this levelled at them. It’s usually thrown about by those who don’t suffer themselves, or possibly by those who know a sufferer who deals with their condition differently.

Of course everyone has a right to their own opinion, and good luck to them. However, that doesn’t bestow the right to try to police how others deal with what is a very personal and individual problem. The key here is in that individuality: some people deal with a problem by bottling everything up and never speaking out; others have to have a good moan to vent their frustrations. Neither approach is right or wrong on general scale: as long as it works for the person and they’re not hurting anyone else, that should be good enough.

One thing I have noticed however is that these individuals who are affronted by openness never ask the opinion of the ill person. They never ask them to explain their approach or why they feel it is the right one for them – they merely assume their own feelings to be of paramount importance and no alternative view to be of consequence.

So I’m writing today to give the other side of the coin.

Firstly, I have Fibromyalgia and Interstitial Cystitis. Interstitial Cystitis constitutes permanent inflammation of the bladder wall (I’d compare it to having the permanent feeling of having a water infection). I’m very lucky in that my IC is quite mild and controlled easily by medication. Aside from the odd painful and inconvenient flare up, I get by pretty much without incident. My main problem is the Fibromyalgia.

Fibromyalgia is a bit of a mystery to doctors. They don’t know why it happens or what causes it – they’re not even entirely sure how to categorise it. The prevailing thinking at present is that it has some elements of an autoimmune condition (tests confirm most suffers have abnormalities in their levels of substance P, a component of the immune system) and is also characterised by a profound effect on the nervous system and the way it and the brain interpret pain signals. This leads to the phenomenon of central sensitisation – an effective re-wiring of the nervous system so that even the slightest touch can cause pain and tenderness. Most sufferers find themselves to always be in a certain level of pain, with muscles and joints (or the fibrous tissue surrounding them) feeling constantly overworked even when they have done very little. Fibromyalgia also effects tiredness levels (sufferers lack enough REM sleep in their sleep pattern) and causess sensitivities to every day foods, sounds and smells, affects the function of the bowel and bladder and can also cause cognitive dysfunction and memory loss often known as “Fibro Fog”.

I say this only to illustrate that I am a person who understands – how can you not, when you go through the same thing 24/7?

We don’t talk on blogs about our conditions because we’re seeking attention. We do it to share experiences with the wider online Spoony community, who are one of the most tangible sources of support and guidance available to us. It is sadly true that in a lot of cases sufferers know more than the doctors who treat them about their bodies and what they need. Suggestions and tips come nine times out of ten from other Spoonies as a result. We also offer our own experiences so that other sufferers know they are not alone, and that a person is listening and understands. When you can’t leave the house and have the social life you had when you were healthy, the internet can be an important source of comfort. Loneliness and feelings of guilt and lack of worth are frighteningly common amongst those with incurable conditons – would you want to feel alone and ignored if that was how you felt day after day? It sounds like nothing, but a reply on a blog stating “I understand” can mean the world to another person.

We don’t update Facebook because we’re begging for sympathy. We do it to keep friends and family in the loop, to have the occasional ten second vent and to raise awareness. A lot of the conditions mentioned are "invisible illnesses". This does not mean as some people assume that they are made up and are actually non-existent because they cannot be seen - that's why they're called invisible, after all. One of the biggest problems faced by those who are ill in the wider population is the lack of understanding and the wealth of misconception perpetuated by those who do a quick Google search or skim read a Wikipedia article and assume there is no more to know than what they find there.

Eczema isn’t always just itchy skin when you’re a child. Fibromyalgia isn’t being a bit sleepy. Crohn’s Disease and other inflammatory bowel diseases aren’t just bouts of diarrhoea. Depression and anxiety aren’t just new “trendy” conditions to mask being a bit low.  Lupus isn’t just a joke on House.

A friend of mine is running 1000km in 2013 to raise awareness about eczema and to raise money for the National Eczema Society. He’s doing this because his partner suffers horribly with it and associated  skin conditions which have a profound effect on her life, and yet the standard response to a mere mention of this is either dismissal or “try E45.” (For the record, I don’t recommend E45 to anyone – it’s full of lanolin and that’s not a good idea for a lot of people with sensitive or irritable skin.)

For anyone who may be interested, his link is here: http://1000kmchallenge.tumblr.com/

And lastly, we don’t post merely to complain. Sure, we all complain occasionally which I don’t think is unrealistic or indeed unexpected – but why is it that when someone who suffers with a chronic illness posts, the instant go-to is “shut up attention seeking”? I’m sure we all have friends or acquaintances who post repeatedly about headaches and colds – why then is this different?

Personally I try to poke fun and laugh at my conditions – it’s part of my coping mechanism and often it makes other people laugh too, which is always nice. My own personal inner demon has a silly name granted by a friend which has stuck. The existence and popularity of blogs like ChronicIllnessCat prove that this is the method of choice for others too. Laughter sometimes is one of the best forms of medicine.

And remember that lastly if you don’t want to read someone’s posts about their illness, all websites have a hide or block function which you are free to utilise at your own discretion. However, if you took ten seconds to just re-read and think about what the person is going through and think about the varying reasons they could be making those posts, possibly you’ll find that you don’t really need it after all.