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Things are going to slide, slide in all directions

1:25am, and I’m worrying.

In the morning I’ll be meeting Dr B, the consultant rheumatologist who diagnosed me with fibromyalgia in 2006. I haven’t seen him since the diagnosis – choosing to forgo the usual treatments – and to say I’m nervous would be an understatement. Dr B is a very straightforward man; brilliant at his job, but he takes no prisoners and rarely smiles, and the last time I was in his company, he poked and prodded me until I cried. It’s not an appealing prospect.

I’m wondering if I’ll have any sort of clue as to my future after tomorrow, or whether I’ll just be referred to yet another department. I’m glad neurology found nothing wrong, but I’m tired of seeing different doctors and repeating my symptoms for the hundredth time.

Even with medication, I’m stressing. I have a habit of being on my best behaviour in front of doctors; and that means not showing any pain or distress. I play my symptoms down, not wanting to make a fuss. I’m fully aware of it and I know it’s part of the reason why nobody can quite work out what’s going on with me, but seem unable to admit to any sort of weakness; physical or emotional.

 
33 Comments

Posted by on April 10, 2012 in Every day life

 

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I’m not crazy, I’m just a little unwell

In medicine, comorbidity is either the presence of one or more disorders (or diseases) in addition to a primary disease or disorder, or the effect of such additional disorders or diseases.

- Wikipedia

After yesterday’s small fatigue breakdown – which hasn’t improved – I experienced a massive knock-on effect, with various symptoms adding to the already soul-destroying feeling caused by a fibro-flare. Comorbidity is undoubtedly the worst aspect of chronic ilness for me; not only do you have the pain and fatigue from fibro to cope with, but you’re also faced with stomach upsets, nausea, stomach cramps and, in my case, worsening of eczema and skin conditions. None of these symptoms are particularly linked to fibromyalgia on their own, but a flare-up also causes other conditions to rise to the fore; the symptoms of polycystic ovary syndrome get worse and depression naturally sneaks in. My diagnoses are so broad that anything could be causing me to feel unwell, and I never quite know what to blame.

In truth, I cannot remember the last time I was ‘well’ – healthy is simply a word in the dictionary to me – and I confess to being sick and tired of this illness which has dogged me for most of my life. Society still seems to look down upon illness as a weakness, and it’s difficult to feel hope for the future when so many around me are unwilling to accept that sometimes, some people are just always sick. They take health for granted, assuming that because they’re healthy and fit, everyone else must be too. The permanently unwell are treated like underdogs, hardly worth a look-in because they simply don’t do anything useful for society.

Over the years, my health – or lack of – has been the subject of many a discussion. People have hidden behind their keyboards, picking my symptoms and and experiences apart, and sometimes downright refusing to believe that I could have a permanent sore throat and always feel like I’ve got a bad cold. I’ve been called a liar and a benefit cheat by complete strangers; people who have never met me yet believe they know more about my illness than I do, and who look down on me as though this is all my fault. As though I chose to live my life this way.

I have said many times before that I’m sick of always being sick, but I’ve never meant it as much as I do today. In my teens, the health worries didn’t seem so bad; the future stretched out forever and I believed I had an eternity to improve. Adulthood seemed like a magical place where sickness never happens, but, of course, I eventually learned that becoming an adult doesn’t magically take away all your problems. Now, three years away from thirty, I realise that this is impacting hugely on my future, and the uncertainty of my prospects is weighing down on me.

Today’s symptoms are fairly nondescript; sneezing, a runny rose, the ever-present diarrhoea, headaches, swollen glands. The lack of specifics are what’s so disheartening; it’s not any real illness, it’s just a load of symptoms thrown together. Add fatigue and pain to the mix, and I feel utterly flattened.

If all this had a name, I’m sure I’d feel more positive. As it stands, I just carry around the dubious title of ‘always sick’, which helps nothing.

 

 

 
32 Comments

Posted by on April 9, 2012 in Every day life

 

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Still Ill – a lifetime of chronic unexplained illness

I decree today that life
Is simply taking and not giving
England is mine – it owes me a living
But ask me why, and I’ll spit in your eye
Oh, ask me why, and I’ll spit in your eye
But we cannot cling to the old dreams anymore
No, we cannot cling to those dreams
Does the body rule the mind
Or does the mind rule the body ?
I don´t know….
Under the iron bridge we kissed
And although I ended up with sore lips
It just wasn’t like the old days anymore
No, it wasn’t like those days
Am I still ill ?
Oh …
Am I still ill ?
Oh …
- Still Ill, The Smiths

Here’s how it works.

You are born two weeks before Christmas, in an infirmary they knocked down a few years ago. The last of four children (the ‘mistake’), you’re born pretty healthy. A normal weight, lots of bright orange hair and a loud cry. A very loud cry, in fact. A cry which didn’t stop for weeks on end, stretching into months.

The doctors work out you have an allergy to dairy products. Not an intolerance; a life-threatening allergy. You are taken off baby milk and put on soya, and the crying stops. Then comes eczema, covering your whole body from head to toe. Years of bandages and E45 cream and scratching.

The illness kept on coming.

Living with chronic illness is one thing. Living with an unexplained chronic illness is something else entirely. Although I have a diagnosis of fibromyalgia, I’m not 100% certain I still accept that fibro is causing all my symptoms. I’m not convinced I actually have fibro. When I was diagnosed, it was a relief because I finally had an explanation for all the fatigue and strange pains, but recent worsening of some symptoms and arrivals of new ones have made me wonder if perhaps I’m experiencing something else. Something which could maybe be treated, or which at least has a definite cause.

Fibromyalgia explains the muscle pains and twinges, but not the joint aches and trapped nerves. It doesn’t explain loss of bladder function or an entirely numb right leg. What if there’s a medical reason for all this, something which could explain the constant kidney and water infections? The cervical infections? The cold-sores? If there’s a name for it, I want to know it. I want to grab that name and fight whatever the hell this is, armed with knowledge about it.

But, for now, I simply don’t know what’s happening anymore. I can’t fight an unknown enemy.

My daily routine during the week goes like this:

Wake up between 11am and 3pm, usually by being shouted at by my mother to “get up and sort my life out”

Light a cigarette or spliff, depending on availability of either. My mother brings me a cup of tea with loads of sugar; I don’t have the heart to keep telling her I don’t take sugar now.

On  good day, I get dressed and washed. Bad day; it’s pyjamas and unbrushed teeth.

Choice of distractions mostly include: reading, wasting time in the deepest recesses of the internet, Bejewelled, The Sims, or a film. On a good day that list will also include knitting. On a bad day, it’s pretty much narrowed down to lying in bed with my laptop, surrounded by empty cans of Pepsi used for ashtrays and empty tea cups.

I never wanted to go down the good day/bad day route. I (perhaps foolhardily) believed that giving in to the concept of having healthy and unwell days was akin to becoming a slave to the illness, and I refused to go there. I never wanted to be the bed-bound invalid which I inevitably became.

Sometimes, it seems like a pointless existence.

I envy those with positive attitudes. Jealousy is an ugly emotion and I’ve never felt comfortable around it, but I truly do feel a touch of the green-eyed monster when I hear of people coping. The concept seems so alien. It’s not that I’ve never tried to cope – I tried my hardest for years – but I feel battered down and jaded by so many hospitals and tests, and I never did learn how to deal with it all. I’ve never been very good at coping; with anything. It’s my biggest downfall.

Two strong parts of my personality have a particular problem with my symptoms: my hatred of sympathy and pity, and my hatred of being accused of lying. Both affect me deeply, and you can’t avoid either when you’re always ill. Sympathy comes in waves, crashing on me and exiting again; utterly meaningless. There’s a difference between genuine concern (which I appreciate) and the all-too-convenient “oh, I hope you feel better soon” so many people mutter in my direction, before hastily cutting off contact with me. I won’t feel better soon, that’s why it’s a chronic illness.

Then there are the disbelievers. The ones who look at me slyly and say, “hmm, you had a cold last month”. The ones who turn their eyes to the heavens when I cough or sneeze. The doctors who look at me like I’m a particularly grotesque lump of dog poo on their shoe when I say the medication isn’t working or that I’ve been vomiting or been unable to move my neck for days. The keyboard warriors on forums who accuse me outright of fiddling benefits (it’s happened). My mother’s disparaging remarks about my “laziness”.

Along with this comes the fear of losing help from the government. In my emotionally confident times, I can convince myself that it wouldn’t be the end of the world, but the reality is it would be. I have a prescription pre-payment card, I have over-the-counter medications to buy, taxis for transport because I’m in no way able to deal with public transport right now, appointment after appointment.. how would I pay for these things? I’d have to get a job.

You possibly have a job. Most people still do, despite the news stories claiming that everybody is cheating the system. The UK would have you believe we’re all workshy spongers, buying 50″ LCD televisions to watch Jeremy Kyle on with our free money, going on holiday somewhere tacky and sitting around being lazy all day. The media paints an unrealistic picture of life on government handouts, making out that it’s a utopia.

The reality isn’t quite so sweet.

Sit still long enough and you’ll atrophy, emotionally and physically. You’ll lose all will to motivate yourself out of the situation and eventually you will accept nothing will ever change. You feel like the lowest of the low – a deplored member of a so-called broken society – and life becomes a fog of bad horror movies, cheap books, sleeping to pass the time and a constant sickening feeling for something more. Something other than a pseudo-existence.

Something else I envy (I really have to deal with the jealousy problem) is people who go to work every day and  who are able to do their job. I feel like I’ve been cheated somehow; that a vital part of being human has been taken away from me. Being a valued member of society doesn’t involve being stuck in bed for half the week or rearranging your music collection to waste a few hours.

You see; I’m ashamed. I can’t shake the feeling of inadequecy that being long-term unemployed brings. I feel like I’m somehow letting  the side down and wasting my life away while other people do their bit. It’s not a nice feeling – sometimes it pulls me apart – and as much as I try, I can’t see the positive in sitting at home all day while life carries on around me.

I will never forgive myself for leaving the bookshop. I had a job; even if it was voluntary. I know things weren’t working out and life with J was destroying me, but I should have held on. I had a purpose, and something to tell people when they asked what I did. For the only time in my life, I felt like I was contributing to normal society. It’s no small thing to suddenly find a niche were before there was only dull, empty space, and I miss those times dearly.

In my lifetime, I have amassed these diagnoses:

Dairy allergy/intolerance

Gluten, wheat, citrus and sugar intolerance

Clinical depression

Fibromyalgia

Irritable bowel syndrome

Sciatica

Polycystic ovary syndrome

Recurring pelvic inflammatory disease

Schizophrenia (no longer diagnosed)

Anorexia

Bulimia

Disassociative disorder

Borderline personality disorder

Asperger’s syndrome (no longer diagnosed, and a story for another time)

Major anxiety disorder

Severe eczema

Recurring urine infections

And I’ve been tested for:

Endometriosis

Thyroid disorders

A pituitary gland tumour

Coeliacs disease

I suppose we can now say brain tumour, after my waste of time neurologist appointment.

Each of these diagnoses and tests have required appointments; most more than one. I have seen hundreds of doctors and waiting rooms in my lifetime. I know my local hospital inside-out. I’ve had things taken out of my body, tissue lasered away, probes stuck up me, ultrasounds and MRIs scan me. I’ve had X-Rays, a CAT scan, a EEG. I’ve had lights shone in my eyes, I’ve pissed in a thousand tiny jars, I’ve had more blood tests than I can remember. I’ve spent hours in A&E. My heart has stopped in a hospital bay. I’ve been ‘hhhmmm’d’ at more than I care to mention. I’ve been patronised and dismissed, only to be back in hospital days later. I know how it feels to ride in an ambulance in gas and air. I know how gloomy the high-dependency unit is.

My life has revolved around doctors, specialists and hospitals. My paper medical notes are huge and tattered from being sent around the Northwest on a regular basis.

And yet, very few answers have been forthcoming. There was a time when I believed that one day the tests would stop, but I confess to losing that faith now. It’s a hellish never-ending cycle, and yet some people – the disbelivers – think that this is a desirable life. That I would rather live like this than work.

They’re very wrong.

I didn’t ask for this.

 
56 Comments

Posted by on January 9, 2012 in Every day life, The Past

 

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The diary

The weather has taken a turn for the downright horrible; heavy rain, hail, wind and sleet. When I got home from S’s last night, my mother informed me that she’s still getting headaches and feeling sick when she puts the gas fire on. So now we don’t have any heating in the living room until we can get someone in to sort it, which is more money we don’t need to be spending but heck, it could explain a lot of what’s been going on with my health too, if it is throwing out carbon monoxide.

We also talked about her decision to read up about MS online. She said she wasn’t going to, but found a link and had to see. She looked at me and said, “you have every symptom, don’t you?”. She reminded me of all the times when she thought I was drunk and we got into fights. I knew I hadn’t been drinking, but she always said I was spaced out, vacant and slurring slightly. I have no recollection of this. I admitted how, at a house party last year, I went to stand up and my right leg refused to work; I collapsed and couldn’t walk at all for about half an hour. I put it down to exhaustion, or just sitting funny… but heck, it now seems I’ve been ‘sitting funny’ for a long time, given all the times I get pins and needles or my foot goes entirely numb. I attritibuted it all to fibromyalgia… but so much has never fit with that diagnosis.

She says she’ll go to the appointment with me. I’m glad. Normally I hate having anybody in the room with me at appointments, least alone my mother, but this isn’t something I think I can handle alone, for once.

I met S at the pub on Friday evening. He gave me a kiss and a hug and bought me a drink. Lent me his filters because I’d run out. Told me I looked “pretty” and put his arm around me. We got quite tipsy; him on Kronenburg, me on a mixture of lager and Tia Maria and coke, and talked about the usual ridiculous things; rubbish band names (“Europe” won), crap Christmas presents, songs you get stuck in your head. He drunkenly went off to Tesco to buy some food and wine for the weekend and I got a taxi to my dealers. It’s weird to think I now have a dealer; it sounds so Hollywood. Stayed there for a while and smoked, chatted to his older daughter about Facebook and music, had a cup of tea and choked embarrasingly on one of his joints; he’s a heavy, heavy smoker, far heavier than I am, and even I can’t cope with what he rolls. He mentioned that O had been ’round a couple of times to buy weed, and I just grunted; I’d sort of hoped he’d give it up when he had the kids, he’s never really reacted to it well. It makes him angry or over-emotional.

S and I spent most of Friday night in bed. For once sex didn’t hurt, and I was able to relax again. I still haven’t told S… it’s weird, because we always talk about sex quite frankly and openly. I just feel strangely less feminine and attractive when sex hurts.We had a takeaway, drank wine, and talked. I’d never really experienced pillow-talk before I met S. I was pleasantly stoned and giggly through the night, S was at his soft and cuddly level of drunk; it couldn’t have been more perfect. Before we went to sleep, we lay together, listening to the rain. He put his arm around my chest and kissed my back. Said he loved me.

Saturday was much of the same. In the afternoon, we went to pick a hard drive and some bits and pieces up from the lockup he’s keeping all his furniture in. He found his mother’s diary, which she’d written when she knew she had terminal cancer, a ridiculous photo of him as a child (“you grew into your looks, didn’t you dear?”) and I dug out some PS3 games and a few DVDs. Afterwards, we went to the pub with his friends (his best friends, I suppose) and sat around for hours, talking shit and getting drunk. I smoked a joint in the smoking area; I was having a good night. S’s friends talk to me like an equal… I’m not sure I’ve ever had a relationship where that’s truly happened.

That night, I asked S if I could read his mother’s diary. I wasn’t being nosy; I really wish I could have met her, and wanted to see things from her point of view. Anyone who could produce someone like S… I love her for that. Her handwriting is sloped like mine. She alternates between blue biro and black ink. She loved her children. Every morning, she would read the bible (she became religious when diagnosed) and loved socialising with friends. She forms her “f’s” the exact same way I do.

Her diary made me think about my own writing. I’ve thrown out so many diaries, ripped up so many pages and even burned one or two… and now I wish I’d kept them somewhere safe. Perhaps if I had, I could rationalise things which have happened.

 
12 Comments

Posted by on December 5, 2011 in Every day life

 

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Asleep in the back

Slept like an absolute champion last night; I don’t even remember going to bed but it must have been around 8pm. Only woke up at 5am this morning, and forced myself to stay awake for once. I decided to do some research into this constant sickness and general shite feeling, and made an interesting (for me, anyway) discovery – my symptoms fit perfectly with chronic fatigue syndrome. There’s no doubt that I have fibromyalgia – I have almost all the pressure points and was diagnosed by one of the top specialists in the country – but perhaps my mother was right. Perhaps there is something more, perhaps the way I’m feeling isn’t normal. The one symptom which stood out for me was unexplained pelvic pain; something I’ve been experiencing for years, and which no real cause has been found for, even after countless internal scans and laser treatment.

I don’t really know what to think right now. There’s absolutely no doubt that since having surgery to remove my gallbladder, I’ve never been 100% well. Before then, I had periods of feeling entirely fine. Since then… I’ve always had swollen glands, sickness, dizziness, cold and flu symptoms. Since that operation (well, since the onset of the infection) I’ve been constantly unwell, with not a single day where I felt healthy or energised. It’s certainly something to think about, and perhaps it’s worth one more visit to my doctor. Perhaps. I spoke to my mother about it, and she said, “I almost hope it is, because that explains it all”.

Of course, I’m worried that yet again it’s a condition which attracts much controversy. Still, I seem to specialise in such conditions – BPD is still highly debated, not everybody believes in fibromyalgia because a purely physical test can’t diagnose it, and a lot of people still seem to believe that depression isn’t an illness at all – so I can deal with cynicism.

Looking at the symptoms is like reading a list of my life.

Every single sign, almost every day. I’ve been tested for diabetes for the blurred vision. I’m allergic to a number of medications, some of which have only become an issue in the past couple of years, and I can’t walk down an aisle in a shop which has washing powder or air fresheners down it without my eyes and throat swelling up. I can’t breathe properly. I sweat like a pig in my sleep. I always have abdominal pain and an upset stomach, regardless of medication to help it. I cough constantly. I’ve fainted quite a few times over a couple of years. My lymph nodes are nearly always swollen. My sense of balance is akin to a newborn giraffe. I have a 3-second memory. It all fits.

But.. I don’t want another diagnosis. Another label. Another reason to be professionally unwell. I’m tired of feeling like a lab rat. I do want a reason for all this though. A name I can put to the total failure my health has become.

I was quite worried about my mother this morning. She usually gets up between 7am and 8am, pretty much without fail. By 10.30, I was starting to wonder if I should check on her. I started creating scenarios in my head where something terrible had happened. I got scared to go into her room. I know she gets on my nerves at times, but I’d be devastated if anything happened to her, and it’s something I’ve been worrying about a lot lately. She finally got up about 20 minutes ago, and she’s now gone back to bed, feeling sick and dizzy. She never goes back to bed unless she’s really ill. We were going to do the food shopping today, but it looks like that’s not going to happen. I’m a bit lost now. I feel okay if plans are there. Without them… it’s just another long, empty day. On a positive note, I’m much happier today. Less anxious.

 
16 Comments

Posted by on November 16, 2011 in Every day life

 

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The dairy-free conundrum

When I was born in 1984, allergies weren’t the big-name book-selling health obsessions they are now. Lactose allergies and intolerances weren’t big news, and I suppose I was considered a bit of a special case because I writhed in pain and vomited whenever I ingested any dairy product. Citrus fruits also caused a problem, and so my mother raised me on a very strict diet. Did this lead to my eating problems? Possibly, but that’s another issue.

As the years went on, I became less allergic to dairy and more intolerant. It still made me ill, but I no longer screamed and pain and eczema didn’t cover my body anymore.So, after a spell in hospital, being fed ice cream and monitored around the clock to check my reactions, it was decided that I wouldn’t die if I drank milk and I’d most likely grown out of the allergy.

Now, I’m starting to show signs of bad intolerance again. Bloating, pain, dark circles under my eyes, extreme tiredness after a dairy binge, bad skin, eczema. It’s not the first time this has happened and I’ve always dealt with it by cutting out dairy products (and sometimes wheat) until the symptoms clear up. I’ve never tried that whilst being a vegetarian though, and I’m not sure if it’s a good idea.

Okay, I confess; I’m wary because it means I won’t be able to binge as easily, and hiding behind the excuse of trying to be a healthy vegetarian is easier than admitting I love relying on food too much to give up cheese and chocolate for the sake of my health. Getting a grip is sorely needed; my health is suffering as it is, and I know from past experiences that when my body doesn’t want dairy, it acts up and makes me feel awful.

I have two options. Give it up and feel better, but run the risk of letting food issues kick off, or carry on as I am and pretend nothing bad will happen.

First world problems. I have them.

 
5 Comments

Posted by on September 20, 2011 in Every day life

 

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