It could have been a brilliant career

It seems keeping up with writing isn’t something I’m very good at now. I’m not sure I understand it; the time is there, but it all seems like such a chore. It feels a little unfair saying that since this blog has been a lifesaver for me on more than one occasion, but the days of typing thousands of words regularly seem to have disappeared. Perhaps it’s simply a lack of concentration – my GP has doubled the prescription of slow-release morphine and it’s a knockout dose, even for me.

However, I do feel like writing a little tonight, if only to distract from the nagging coming from the Infamous Ankle. The prednisolone course finished yesterday; it hasn’t been particularly effective for a couple of weeks now, since the dose reduced to one a day, but I’m still worried what the next few days will bring. The morphine helps but only does so much, as the pain appears to be coming from the actual inflammation of the tendons. I now know that’s a normal symptom of psoriatic arthritis, and I’m feeling slightly bitter that there were so many signs of this over the past two years. So many signs. They could have had me on steroids earlier. The prednisolone exceeded all expectations on the higher dose and I was able to walk almost normally and my sleeping patterns improved hugely. For the first time in years I was able to see my ankle bone, and my shoes fit properly. The joy on the first day I could walk to the local shop was… well, I was very, very happy. S and I even took a walk around the block, as I haven’t been able to do that once since we moved in almost a year ago. I missed a lot, all because the doctors missed everything.

Still… can I afford to be bitter? Probably not. I’m going to be stressed enough with the inevitable return of the ankle swelling without piling more problems on top.

 

Image

I also finished the methotrexate course last week. That drug has been a… nightmare. A pure case of the cure being worse than the illness. I’ve been repeatedly asking everybody why I’m putting myself through the side effects – vomiting, constant nausea, sweating like a pig, sleeplessness, mania – even though I know it was my choice. I didn’t rush into taking MTX; I considered it over a week while I waited for x-ray and blood results to check I was able to take it in the first place. I considered it incredibly carefully.  In all my years of medications, I’ve never taken such a dangerous drug and it was a difficult decision. Still… I think I made the right one. If it slows the progression of the disease, surely it’ll be worth all the sleepless, sweaty nights with a bucket by my side and a helping of paranoia?

I hope so. Strangely, I feel even worse for not taking it this week. I just hope this isn’t a sign of things to come.

Wrong way on a one way track

Can you help me remember how to smile, make it somehow all seem worthwhile?

How on earth did I get so jaded?

Depression is a cruel, cruel illness. It robs you of the ability to give a damn.

I find it incredibly difficult to write about depression with hindsight. It’s far easier to force myself to open the laptop when I’m feeling utterly sunk in misery and numbness, and explain it in real time. Otherwise… I can’t begin to describe how it feels to be trapped so far within myself that the outside world is just a whisper in the background.

For weeks – months – I have slept during the day and lain awake at night until the sun rises. Attempts at righting my sleeping habits have been pointless; the pain dictates what I do, and when I do it.

sleeping in black and white

So, am I free? Almost. Today, I managed to wash the dishes, tidy the bedroom, water the plants and do two loads of washing. That’s that most useful I’ve been in months. Strangely, I haven’t needed a single painkiller today up until thirty minutes ago. Last night, my foot was swollen to the point where the outline of the damaged tendon was clearly showing, so I don’t know why I’ve been granted a small respite today. All I can assume is that my plan of keeping my foot off the floor as often as possible (I’ve invested in crutches) is working. True, I hate having to stay on the sofa, and it’s horrible knowing spring is somewhat here but I can’t go for a walk or even down to the garden (too many holes in the pathway), but perhaps it’s paying off. It has to be better than last month’s buckets of ice water and boiling hot towels.

I’m trying everything. Which is… a good sign, I think. Over the past week I’ve started thinking about the future, and that’s something I didn’t think I’d feel happy feeling. I’d given up entirely, and I almost felt safe there. Does that make sense? Failure is… easier, somehow.

On Saturday, I had an MRI at Liverpool Hospital. The week before I had ultrasounds at the same hospital. In nine weeks, I see the rheumatologist again. Until then, my GP is giving me regular codeine prescriptions and, if I need them, I can ask for morphine patches. I’m wary of doing so; I don’t want to leave myself with no options. I get used to opiates far too easily.

codeine

So… the codeine. It’s going okay, actually. There have been a few days where I’ve taken more than the recommended dose, but that was purely through pain. So while I’m still not entirely responsible… I’m learning. I’ve learned a lot of lessons recently, and one of those is that painkillers are important. When you’re in so much pain that you could rip your own face off, the last thing you care about is abusing painkillers to escape the fear. You just want to escape the pain, and let them do the job they were designed for.

Oh, it’s not easy. I’m constantly on my guard, and I know it’s something I’m nowhere near over. Addiction is… well, it’s an addiction. It’s come back far too many times for me to ever say I’m over it.

They’re not perfect. Tramadol was much more effective, but I couldn’t be doing with the apathy and constant nausea. So I still have pain, it just becomes easier to ignore. That’s why opiates are so perfect. They don’t remove the pain, just stop you caring.

Like depression.

One day, perhaps this will stop happening. I’ll stop losing it, and life can run more smoothly.

 

A letter to my consultant

Current medications:
Propranalol Hydrochloride (80mg daily) – for anxiety and panic attacks
Lansoprazole (30mg daily)
Etoricoxib (60mg daily) – for inflammation
Pregabalin (300mg daily) – for fibromyalgia
Duloxetine (90mg daily) for pain, depression and anxiety.
Dianette – contraception and treating polycystic ovary syndrome

Recent medications:
Cipralex – for depression and anxiety
Celebrex – for pain
Omeprazole
Prednisone (12 week course to treat chronic eczema)

Past surgeries:
Four wisdom teeth removed
Laparoscopy (to investigate painful periods and bleeding) (2007). Laser ablation done at the same time to treat inflammation in cervix.
Cholecystectomy (2008)

Current diagnoses:
Synovitis in left ankle and inflammation of tendon at side of foot (originally misdiagnosed as achilles tendonitis 18 months ago), diagnosed approx. 6 months ago.
Pompholyx eczema/dyshidrotic dermatitis (diagnosed in 2012)
Polycystic ovary syndrome (diagnosed in 2001)
Fibromyalgia (diagnosed in 2006)
Irritable bowel syndrome (diagnosed in 2002-ish, originally treated with Mebeverine but currently under no treatment due to side-effects)
Depression and anxiety (first diagnosed at the age of thirteen) and Borderline Personality Disorder.

Current symptoms:
Pain and stiffness in fingers, knees, upper neck/base of skull, hips, feet/toes, lower back and wrists. Fingers, knees and toes most affected, although neck is becoming much worse. Pain and stiffness much worse in morning/after sitting still, and takes at least 2-3 hours after waking to begin loosening. Gentle movements seem to help the pain in most joints.
Unable to bear weight on heels for 2-3 hours after inactivity.
Swelling in fingers, toes, ankles and knees after waking/inactivity, especially in joints closest to nails in fingers and toes.
Clumsiness, especially in morning. Unable to grip items with confidence, especially pens and cups.
Fingers and toes have become misshapen over the past 18 months.
Weight loss. This is a particular concern for me as I haven’t dieted, although my appetite has decreased dramatically, again over the past 18 months. Since September 2012 I have lost almost three stones in weight, which is very unlike me as I have always struggled with keeping my weight down and I love food.
Recurring cold sores.
Itchy eyes and very dry mouth, which seems unconnected to medications.
Lack of temperature control. I have suffered from this for a number of years, but only at night. Recently it has become an issue throughout the day also, leaving me either far too cold, or far too warm. Fingers and toes always feel painfully cold regardless of weather or environment.
IBS has become much worse in the past 18 months, with constant diarrhea, cramps and loss of bowel control.

I have been referred to orthopedics, physiotherapy, rheumatology at SDGH, and to the local mental health team all regarding my symptoms. Because the pain and swelling in my left ankle was misdiagnosed as achilles tendonitis, they have only concentrated on that area of my body, and not taken the whole range of symptoms into account, which I feel are connected somehow as all my symptoms either appeared or became worse around the same time.
Emotionally, this has had a huge impact on me, and my life. I am no longer able to live independently as I need somebody around to ensure I have help with basic tasks (like cooking, taking a shower, and walking), as co-ordination and balance are something I struggle with a lot now. I am no longer able to go outside on my own in case I fall or am unable to bear weight on my heels. As a result I am now almost entirely housebound and even though I have bought a walking stick (after physiotherapy claimed I didn’t need help with walking), this only causes pain in my hips and neck as I try to balance with it.
I feel that if I could at least have a name for what is happening to me, I would cope a lot better, and possibly find a treatment which may help. Currently, I have lost all hope of ever leading a normal life, of being able to work. My hobbies all involve movement (walking, sewing, knitting, photography) and I am no longer able to do these things, and the rapidly increasing pain in my joints leave me unable to do the most basic tasks such as hold a pencil (I am also a writer) or comfortably type on a keyboard without wrist pain.

“We can’t let her think we’re unintelligent, T”

My mother is still stressing out over the benefits situation. This morning found her surrounded by bank statements again; double, triple and quadruple checking dates just in case she’s made a mistake somewhere. The living room floor has become a holding pen for pieces of paper, pens and cups of cold tea as she tries to ensure every last little bit of money in her account can be explained. Pension credit. Money my father occasionally paid into her bank for work on the house. Gifts. Every last penny is being accounted for, and it’s driving me crazy.

I don’t know if she’d ever understand this, but they’re investigating me, not her. I’m doing my best to ignore all that’s happened and let it wash over me, but the constant stress of my mother’s obsessive perfectionism is ruining my attempts at coping. I want to slap the bank statements out of her hand and shout at her; tell her it’s my life on the line, not hers, and if I can try to deal with it then she should too. I know that’s a selfish attitude to have, but I wish I could make her see that she’s just winding herself up. The fraud officer… she doesn’t need all this information. I wish I could explain that, but my mother doesn’t hear me when she’s determined to prove some sort of private point to herself.

I had to type out a couple of cover letters earlier, to put in with the collected statements. My mother’s wittering and stressing and tutting… I made so many mistakes, and each time my mother pointed the errors out and said, “we can’t let her think we’re like the others who get accused. We’re intelligent”.

She reads the Daily Mail.

I haven’t felt able to think rationally all day. It’s 1am now, and I’ve been trying to write this post since early this afternoon, with little success. Every time I sit down to type, I get distracted. I get like this sometimes; I go from laid-back and lazy to almost-ADHD within a second, unable to stop my brain running away with itself. Today was one of those days, with a hefty dose of panic thrown in.

All day I’ve been on the edge of tears for no damn reason. I hate it when I get like this. I can remember standing at my teacher’s desk in primary school, being told off for something stupid, and bursting into tears. I felt so ashamed; no other kid reacted like that. I still do it whenever I feel threatened or backed into some sort of corner.

Before we even got to town, I was panicking and snapping at my mother. I didn’t mean to; I just had no control over my emotions. Again, I hate it when this happens… everything in my life is about control and knowing exactly where I am emotionally, and when I freak out it feels like I’m going to die. All the protection I build around myself gets stripped away by anxiety and I feel utterly exposed. Like the whole world knows I’m a big, fat failure.

It’s now 3am. I tried to sleep, but my bedroom is too warm and my mattress is at an odd angle since my mother flipped it over at the weekend. I keep thinking back to today/yesterday, and realising just how much anxiety still rules my life. It’s not just a one-off either; I freaked out at the weekend too, while S and I were in Liverpool. I was frustrated that everything was hurting, and walking was near-on impossible. I couldn’t keep pace with S and even though he tried to slow down for me, I still felt angry that I couldn’t walk normally. That I had to keep stopping and sitting down to give my hips and legs a rest. I felt like I was letting S down; he’d gone to the effort of taking me for a day out, yet I bitched and griped my way around the city.

I tried eating at the restaurant he took me to – a bistro we’d visited before – but even the Greek pizza tasted like disappointment. On the train home, I sat next to S while he chatted to an old man sitting opposite, feeling utterly miserable. I know I shouldn’t let the pain get to me, but sometimes it’s hard not to wish I could just be normal. Just for one day.

We got back to his landlord’s house and sat in the garden for a while, smoking and drinking coffee. We chatted a little, and I made a few jokes about my inability to cope. S seemed unusually introspective, and something inside me decided to take the BPD view on things. I asked if he was okay. S said yes. I asked again. I worried. I thought perhaps I’d ruined the whole day by being me. I said he looked sad; he said he was just tired. It took all my strength not to ask again, to avoid grabbing onto his arm and begging him not to leave me.

It’s now half past two in the afternoon. Managed to sleep, eventually, after going downstairs and stuffing myself with mango jelly. I’m quite proud of myself; I wanted chocolate cake, but forced myself to go for the low calorie option instead. For now, the binge cycle is somewhat under control.

Yesterday ended up being a total disaster. I was angry and defensive to begin with, and my mother commented on my paranoia; something I hate being brought up. I know I’m paranoid. I don’t need to be told. I tried to keep it together as we walked around town, but everyone seemed to be staring at me and getting in my way on purpose, and half way around the shops I realised I hadn’t taken my medication – which only caused me to panic more. Life without the cipralex and beta-blockers is unbearable, and it amazes me how quicky I can go from coping quite well, to a nervous wreck within hours of missing a dose. Especially without the beta-blockers; they slow my heart down and stop me going into the fight or flight response because of entirely ridiculous things.

I complained. Bitched. Moaned. I felt bad, but I couldn’t help it. My brain said one thing and my mouth said another. The pain in my ankle was frustrating me and every tiny little noise set me off. Our main shopping street isn’t particularly big, so it gets very crowded. Even though it was pouring with rain, the crowds were enough to make me feel entirely insecure and vulnerable, and my mother kept telling me off for being irrational, which didn’t help at all.

I’m sorry for this post. I know it’s mixed up and confused. I don’t even know what I was trying to say.

All I need’s to be with you.

I admit, the letter has been playing on my mind more often than I’d like it to. I promised myself I wouldn’t allow panic to creep in, and so far I’ve managed to hold it back quite well, but this morning I woke at 6am after a dream about O – my fifth in a row – and the silence in the house has made room for me to think. I hate thinking. Thinking nearly always leads to bad things.

I nearly didn’t post anything about the fraud officer visiting on Tuesday; I questioned if perhaps the whole privacy breach and subsequent passing around of my blog link could have something to do with the visit, and if so… should I speak about it on here? Could I inadvertently make things worse for myself? Then I realised that nothing I could say could change everything I’ve written in the past; I’ve documented the appointments and the pain and the medications. I’ve been brutally honest. I’ve expressed my hatred of claiming benefits. I’ve spoken about how I’ve tried to work, but have always had to leave voluntary jobs because of illness. So my blog isn’t exactly a hotbead of fraudulant activity.

Two things saved me from damaging myself this weekend. I wasn’t being dramatic in my last post; as I wrote, I was filled with sickness from panicking; that pre-panic attack bile rising into my throat and choking everything I try to say. As I typed, I was considering how easy it would be to dismantle a Venus Spa razor (in hindsight, it would have been impossible) and just how much food I could shovel into myself before I achieved carbohydrate calm. I just typed, and let it flow, and let the fear and anger out. Usually I censor myself a little – going back to correct mis-spellings and perhaps removing a few hundred swear words – but this time, I just wanted some sort of outlet. Some safety net which wasn’t harmful to me.

It didn’t work, but you know what did? The lovely, supportive comments which poured in. From those I’ve chatted with before, and from total strangers to my blog. Not a single cruel or judgemental thing was said. The advice calmed me. The kind words… well, I cried. I cried buckets. Even though I don’t know any of you, you still pulled around me and helped when I needed it. I don’t think replying to all the comments will achieve much – I’m trying to let it all go now and forget until tomorrow – but I do want to say, from the very bottom of my heart… thank you. When real life let me down, a group of almost-strangers (and total strangers) on the internet helped. Considering I’ve seen little kindness online… it means a lot. I hope everyone who commented knows that, and knows they helped.

The second thing to save me was S. On Saturday, my mother decided that she had to clean and tidy every inch of our house for the fraud officer. This is nothing new; I accept our house is a little… eccentric, perhaps. Books piled in corners. Books spilling off shelves. Books tied in bundles, waiting to go to charity. Books everywhere. However, I don’t see how tidying will help anything. Surely it’d give an unrealistic view of what our real lives are like? After all, the house is usually an ungodly mess. It’s not like we’re stockpiling dodgy porn or laundering money; we read a lot of books, and books take up space. It’s hardly a crime to love reading.

As a result, she expected me to help. Of course; I live here too. I did, however, feel slightly resentful that she’s the one freaking out willingly, when the appointment is concerning my benefits. I’m doing my best to stay calm, but watching her rush around, pulling chairs out and panicking over dirty dishes… it doesn’t help. I feel guilty. It’s my fault everything is such a mess;  I just can’t cope with the housework. I try – things have slipped since I’ve had ‘flu, but I do my best to keep my bedroom tidy and I sometimes offer to clean the bathroom – but I just can’t do it. The piles of books are heavy, and as soon as they’re cleared away, we get them out again anyway. Washing the dishes inevitably ends up in my mother informing me that I “can’t wash up properly” and she re-does the whole thing, so I gave up trying years ago.

I tidied away my underwear and informed my mother that, actually, I would really like to visit S because I hadn’t seen him at all last weekend and we hardly spent any real time together at Z’s party. Earlier, she’d said I needed to help her get the house sorted – an impossible task – so I’d lost all hope of seeing S until next weekend, but she surprised me by saying it was okay so long as I was back early on Sunday. I bit my tongue at the urge to shout, “I’M TWENTY-SEVEN YEARS OLD!” and accepted the rare gift.

S, as always, was wonderful. He knows I adore his white and lilac shirt, and he wore it for me. Gave me a big kiss – despite the coldsore – and a hug, and showed me all the ingredients he’d bought to cook me a roast dinner. I nearly cried at the kindness of it all. We sat in the garden and smoked while I told him my fears; that I’d lose my benefits – my only source of income – and would end up homeless, or I’ll be taken off incapacity and/or lose the high care component. That I’ll be forced to attend a jobcentre course to shoehorn me back into work. I’ve never worked; I can’t go back to something I never did, and what happens if an appointment with a specialist falls smack bang in the middle of the course? If you miss a day, you get all money stripped from you. I told him all this and tried not to cry – I’ve only cried in front of S twice: once when we were watching fireworks and they reminded me of my stepdad, and once when I was just tired and grumpy and needed a hug and some sympathy from somebody who wouldn’t judge me. I never set out to hide tears from S… I just don’t think they’d help when he’s so reliable with giving good advice and support.

As promised, S cooked me a roast. He’d bought me cheese and leek sausages, and made extra potatoes because I haven’t been eating properly for a couple of weeks. As he cooked, (I peeled the potatoes and crushed the garlic) we talked about the flat. The builders have started; the kitchen and bathroom need refitting, and after that it’ll need redecorating, so the plan is to move in around a month to two months. I can cope with that. At least now I have a realistic time frame to tell the benefits office I’ll be moving out of my mother’s house. I just hope it all works out. So much has gone wrong for me, and I’m almost scared to believe that perhaps – just maybe – something I long for will come true.

We spent the weekend playing Boggle and Worms: Armageddon. Bought a takeaway and watched 15 Storeys High on Sunday night. S kissed and held me and constantly made me pinch myself; how did I – a high-school dropout from a shitty seaside town – end up with such a perfect boyfriend?

We sat together on the field near his house – him lying on the ground with my cardigan under his head, me sitting up with my legs tucked around his – and I felt safe again.

I wish S was here now.

Living with chronic pain – the reality.

Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body.

The name fibromyalgia comes from three Latin words:

  • ‘fibro’ meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
  • ‘my’ meaning muscles
  • ‘algia’ meaning pain

However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:

- NHS Choices

I was diagnosed with fibromyalgia in 2006. Within a couple of years, I had gone from an active girl, going for eight-mile walks every day and swimming regularly, to someone who spent days in bed, taking a cocktail of painkillers and swapping my amazing shoe collection for a series of comfortable slip-ons and trainers. To someone who often couldn’t fasten their own bra or manage to sleep.

The problem with a fibromyalgia diagnosis is that, although it’s in the British Medical Journal and accepted as a viable diagnosis by medical professionals (after ruling out more serious conditions like MS), many people still refuse to accept that somebody can experience intense pain without an obvious, visible, medical cause. In people with fibro, the nerves overreact to pain and can’t distinguish between a small touch and a smack in the face, meaning that sometimes even placing your hand on their shoulder can cause the person intense pain, akin to the skin burning and muscles tearing.

Fibromyalgia is usually diagnosed by testing the patient for certain ‘pressure points’ around the body. These points are extremely tender, and touching them lightly causes pain in that area. However, the pain of fibro isn’t limited to those specific points; it’s just a diagnostic tool rheumatologists use.

My own diagnosis consisted of a long talk with Dr. B – the consultant who also diagnosed me with osteoarthritis a couple of months ago – about my mental health problems. At the time, I didn’t see how it was relevant; my pain was physical. I now realise that he was trying to rule out pains caused by depression; a common symptom.

Dr. B poked me in the back and thighs with his fingers, asking if it hurt. Every time it did I squeaked and shot across the room. We spoke about my history of gastric problems and the tiredness I’d been unable to shake since my teens. The lack of sleep and never feeling awake. The regular blinding headaches and the pains in my jaw and neck which sometimes hurt more than I could cope with. Written down, it doesn’t seem so bad; everyone gets tired, everyone has headaches. Everyone goes through periods of bad sleep. Strange pains with no explanation probably affect everyone at times. However, when you’re always tired, always in pain, always running to the toilet and laying wide awake for days at a time… fibromyalgia is relentless. You can improve at times, but it comes back. Fibro-flares can last a day or a year, and the gaps in between aren’t exactly a relief; the pain just lessens a bit. Everything’s still hurting.

Tiredness as a symptom is often looked down on by the layperson. It sounds quite flimsy; an easy excuse for being lazy. However, I have been tired for years. Unless you have a chronic condition which affects your sleep, you just can’t understand how constant fatigue can destroy a person. Suicide isn’t uncommon.

Society as a whole seems to view chronic pain with suspicion. Even in cases of serious – even terminal – conditions like MS. Pain doesn’t seem to be a good enough excuse for claiming disability or having a carer. Unless you’re in a wheelchair, you may as well be making everything up.

Having your symptoms played down (“it can’t be that bad”) or denied entirely (“I heard from my friend’s uncle’s cousin that fibromyalgia/arthritis can be cured by a juice diet”) wears you down. When you live with chronic pain of any sort, you learn very quickly what you can and can’t do, and what will or won’t help. You become an expert on the subject, and while advice may be well-meant, it really doesn’t help. Telling somebody they’ll ‘get over it’ is useless when most of these conditions are life-long or can last for years.

In my comments on my post about privacy I mentioned the attitudes of members of a forum I used to post on. I never hid the fact that I was classed as unfit to work; disabled, in the medical sense. I was open and honest about the benefits I received – I’m on DLA and incapacity – although I rarely mentioned fibromyalgia unless somebody else brought it up; I didn’t want to be defined by any conditions I have. I’d already had abuse thown at me when I admitted to suffering from depression, and I knew I couldn’t take insults and accusations from strangers when I was already struggling to accept my position in society.

When you can’t work, you feel useless. The issue of employment and benefits is a hot topic in the UK right now, and most newspapers seem to revel in accusing everyone without a job of being a scrounger. The unemployed and the unemployable are lumped together with no leeway for disability, no allowance for redundancy or personal issues. I try to avoid the news precisely because of this attitude, but it’s difficult to miss when huge headlines scream out from paper stands with a photograph of a man with a supposed bad back who’s been living  a secret life as a judo instructor while claiming disability benefits. These cheats are in the minority, but society sees these photos and assumes everyone with a bad back is jumping out of aeroplanes and partying.

I’d like to credit humankind with more intelligence and free-thought, but I can’t help wondering if the majority looks at individuals like me and judges me for not having a career. When so much of what a person does is related to what they do for a living, it can be hard admitting that not only do you not have a job, but you perhaps never will. Taxi drivers often assume I’ve been at work or am on a day off; I used to try to explain, but the majority stopped speaking when they learned I didn’t have a job of my own. Now, I just say “yeah, long day” and leave it at that, or say I’m jobseeking. I shouldn’t have to explain my situation to total strangers, yet it happens all too often. I’ve stopped chatting to others in the street because they inevitably ask what I ‘do'; somehow, I don’t think they’d appreciate me replying with, “lie in bed feeling sorry for myself, mostly”.

For the past year, I’ve been pretty much bed-bound during the week. Since starting on Lyrica, I’ve been able to sit up and move around the house more easily, but it’s sometimes still difficult to make it down the stairs when my legs feel like they’ve fallen off. Pins and needles is common; my right side often goes totally numb. You just can’t walk on a dead leg, as much as you want to.

My hands still tremble, although they’ve improved slightly due to medication. Dropping cups and bottles of milk is common, as is walking into stationary objects when my legs decide to go the opposite way without permission. My knees often lock while I’m walking down stairs, and I’ve fallen over more times than I’d care to remember over the past few months. I’ve damaged my elbow, twisted my ankles, banged my head and bent my fingers back. I pull doors into my own face because I can’t judge distance due to being distracted by the pain.

I can’t cross roads without help; I rarely go out on my own now because I can’t cope with struggling across a busy street into the path of incoming traffic. I can’t know if my knees are going to give in half way across. I find that using a walking stick (black, with coloured flowers) helps with crowds – people tend to move if you’re obviously struggling – but I still get jostled and pushed. Maybe it’s my age; you don’t see many 20-something’s walking around with a stick in this town. Especially not ones with 36 piercings and visible tattoos and bright hair. I occasionally wonder if I’m being assessed by strangers because I obviously cope with the pain of piercing needles but not with burning sensations running through my arms and shoulders.

I don’t cope. It hurts like hell, but it’s a pain I can control. When your body betrays you, you need to hold onto something you have power over. When the needle goes into my body, I choose where and when. I choose how much pain I’m likely to feel. Fibromyalgia and arthritis don’t give you that choice.

There seems to be an assumption that life on benefits is taking the easy option. I frequently hear tales of 40″ HD tv’s and cars galore; where do they think that amount of money comes from? From DLA and incapacity, I’m ‘earning’ close to minimum wage. My television (20″, not HD) was a gift from my parents. My iPod was a Christmas present. S bought my PS3. I don’t have a car – I can’t drive, what with being disabled – and holidays are rare. The only time I’ve been abroad is to Germany on a school trip.

I  lived with my mother for so long after splitting with J because I couldn’t afford to rent on my own; with S, we can split the cost. I still pay my mother rent; it’s not free.

I will never own a house unless I inherit one or come into money through the lottery. I have no credit rating, and will never be allowed a mortgage as long as I’m ill. I don’t get handouts; I get help towards extra costs my disability causes. Costs such as handfuls of medication – I don’t get free prescriptions or a reduction – and taxis because I can’t always walk to the bus stop. Aids like walking sticks and adapted kitchen  equipment so I can open jars and unscrew lids. Clothes without fiddly buttons and shoes with extra support. Costs for travel to hospital appointments; I often have to get a taxi 20 miles or more first thing in the morning to see specialists, which can cost over £50 there and back.

Although the people closest to me show understanding, strangers are often callous and cutting with their remarks.

You’re what’s wrong with society” – like I asked for this.

You go to the pub, so you can work” – On Fridays, I meet S at a pub near the hospital. He likes to drink a few pints at the end of the week after working in the lab for very little money or respect. Before Lyrica, I’d have a couple of pints with him; is that so wrong? I’ve spent the week being in pain, do I not deserve a chill-out with my boyfriend? Are the disabled not allowed to drink? I sit down, I don’t dance or do gymnastics.

Pothead/druggie/addict” – I understand that some people are very anti-drugs, and have a preconception of those who take them. Those who smoke weed are seen as lazy drop-outs. Yet those who judge often have no problem with legal drugs such as paracetamol or codeine. Cannabis is a proven painkiller; the studies have been done, and I’m living proof that smoking a joint can calm muscle spasms and make everyday tasks easier. I’ve had addictions to painkillers – codeine, tramadol and morphine – and I feel far more stable and healthy for swapping those for cannabis. Codeine damaged my liver, tramadol damaged my mind, and morphine destroyed my whole life. Cannabis has brought me out of myself, soothed pain and calmed my panic attacks; so why is it so bad that I choose to smoke it? It’s my choice, and I could easily push my liver too far and die if I took all the painkillers I’d need to dull the pain. Instead, I just continue damaging my lungs –  I smoke anyway – and accept it as a side-effect of treatment. All medications have negative side-effects. I was taking 40 co-codamol pills a day; how can that  be better just because it’s legal?

You look fine” – well, thanks I suppose. That’s because I cover my face in trowelled-on foundation and bronzing powder to hide the grey pallor of my skin. I make myself look as presentable as possible because what 20-something wants to look like a stooped lump of sweaty, pained lard? I style my hair because it looks nice when I do. There seems to be a belief that the disabled can’t possibly look healthy. We fake it, very well.

Chronic pain isn’t fun and it doesn’t make you rich. It’s not an excuse to avoid work. I would kill to have a job. As a child, I had dreams of growing up, having a career and being independent. I wanted to be a paleontologist or a secretary and day-dreamed about my office and taking money home. Life holds no guarantees though and, through no fault of my own, I ended up with arthritis and fibro, along with mental illness. I wouldn’t expect to ace a job interview anyway; what business will allow weeks off with no notice? Who would help me get out of chairs since I can’t stand for more than a few minutes? I’d need time off for tests and appointments, someone would have to help with lifting things. It’s just not practical and I’d cost the business money. I’d be a liability.

Some people do abuse the welfare system. I’m not in denial of that. However, far more receive it for genuine reasons and without it life wouldn’t be worth living. Without it, there’d be no medications. No rent. No food. No clothes. No quality of life at all.

Some seem to think that’s what we deserve for daring to be unwell.

Awards and the street party

I never thought I could say that the Queen stopped me from making a coffee, but it seems the monarchy reaches further than Buckingham Palace. The drug squad officer who lives opposite me arranged a street party for the jubilee, and for reasons unknown he decided to hold it on a Tuesday; two days after the actual event. I slept badly last night, and waking up to a thousand watts of bad disco music wasn’t my idea of an ideal morning.

Perhaps I’m the commander of my own fate, but I refused to join in. My mother has escaped to my sister’s house, and I’m alone in my bedroom trying to watch E.R over the music and awful DJ, and wishing the neighbours would go elsewhere; I can’t walk through the living room without being seen and I don’t fancy being the subject of neighbourly gossip as I stumble past the window in snowflake pyjamas and with hair like a pile of orange candyfloss.

Gossip – Norman Rockwell

I’m restless today; although the weekend was as wonderful as always, a great big fibro-flare hit on Saturday night and I’ve hardly slept since. Hours of accidentally kicking S out of bed with leg spasms and needing neck rubs and help getting out of chairs has led to a bit of guilt. S is so good to me; he never complains, and part of me thinks that perhaps he doesn’t even mind having to help to me out… but I constantly worry about being a burden on others, and I worry more when it comes to S. I’m terrified of being a ‘bad’ girlfriend to him.

In the past… I’ve always been made to feel inferior in relationships. I’ve been partly to blame – I naturally set myself lower than others – but S is the only man who’s never made me feel like I’m asking for too much.

I’ve been going through a weird time recently. Not quite depressed, not quite content; something in between which I’m unsure how to deal with. Anxious and edgy, prone to overreacting to repetitive noises and conversations I don’t want to be a part of. I’ve tried to keep up a normal-ish routine, but I’ve missed a lot of comments and award nominations from readers. So I’m going to attempt a small catch-up.

I’ve been nominated for the Reader Appreciation Award by Another Battle, magically madNZ Cate, Sparrow, Hawkruh, and also the Beautiful Blogger award by eniola folarin. If I’ve missed anybody out, my sincere apologies; it took me 20 minutes to find all those. I really have to keep on top of things. I’ll follow the rules for the reader appreciation award:

1. Include the award logo somewhere in your blog.
2. Answer these 10 questions, below, for fun if you want to.
3. Nominate 10 to 12 blogs you enjoy. Or you pick the number.
4. Pay the love forward: Provide your nominee’s link in your post and comment on their blog to let them know they’ve been included and invited to participate.
5. Pay the love back with gratitude and a link to the blogger(s) who nominated you.

The Questions…

1. What is your favourite colour?

I don’t really have a favourite; I prefer shades than actual colours. Greens, purples and browns attract me the most.

2. What is your favourite animal? 

Orcas, lemurs, sloths and, of course, cats. I have a fondness for frogs and snails too.

3. What is your favourite non-alcoholic drink? 

Coffee. Lots of coffee. I’m not fussy as long as I can get some caffeine, but the stronger the better. I have a weakness for Nero’s mocha.

4. Facebook or Twitter?

Facebook. As much as I try I can’t get on with Twitter. I have an account (halfwaybetweenT) but rarely mage to log in successfully, and when I do I can’t keep up.

5. Favorite pattern? 

Not a pattern as such, but I have a Rennie Macintosh rose tattooed on my back:

6. Do you prefer getting or giving presents?

It’s a cliché, but I love giving gifts. There’s few better feelings than somebody opening a present you’ve given.

7. Favorite number?  

Strangely, seven. There’s no reason why; it just feels like a nice number.

8. Favorite day of the week? 

Friday. Unlike most I don’t have to get through a working week, but the weekend means a lot to me. They’ve always been ‘mine’ – it’s the one time my mother doesn’t expect me to spend time at home. She still asks where I’m going – and it’s always to S’s – but I can live with that.

9. Favorite flower?

Fuchsia and chives.

10. What is your passion?

Writing.

The following blogs are about different subjects, but all fantastic. I’ve picked these bloggers because of their honesty and ability to express emotions and situations in ways I can only hope to.

Diabetic Redemption

My Bipolar Life

Letters to my Future Self

quitthecure

Manic Macca’s Bipolar

A Little Crazy In The Coconut

Not Quite Lost

stolencrayons

My Ox is a Moron

Struggling with BPD

thepickledprincess

myinnervoiceislaughingatme

Apologies for the long post; it’s given me something to do while the false festivities assault me from outside.