The drugs don’t work…

Yesterday was Fibromyalgia Awareness Day and I think my body knew it. My back is certainly making me very aware that fibro hurts. So much so that I couldn’t even finish this in time to mark the day. If I’m forced to know about fibromyalgia all the live long day, then I’m afraid you’re going to have to find out about it today.

Fibromyalgia difficult to manage. It’s unpredictable. You can hurt everywhere or the pain can focus on a new spot everyday. One day you might be too fatigued to get dressed. The next everything you eat sends your guts into a temper. It can have an effect on cognitive abilities, make your skin burn, muscles ache & head throb. Sometimes all the at the same time.

There’s no cure. Sufferers often experience constant pain. Treatment usually includes a combination of pain relief medication and non pharmaceutical interventions (massage, tens, specific exercises). Many also receive therapy aimed at helping accept chronic pain because treatment rarely results in the eradication of symptoms. Living with fibromyalgia means always feeling some version of unwell.

Whilst you can’t make any of us better, you can help. There are easy peasy ways to not make our lives harder.

Ditch ‘Get Well Soon’

Fibro is a chronic, incurable illness. We are never getting better. It may be well intended and seem like a little slip, but it’s exhausting. Luckily it’s simple to fix. You can express both your well wishes & your understanding of the situation with these words, I hope you have a better day soon.

Don’t offer magic cures.

Struggling with an illness that impacts every aspect of your life motivates you to get informed. Fibro folk don’t need your unsolicited advice. We definitely don’t need to hear about the same magic cures over & over. We’ve researched whatever diy fix you heard about in instagram. We try credible therapies available to us. We’ve considered our diets & yoga & cbd. We really don’t need to hear about how your cousin’s flatmate changed their life with turmeric. It’s patronising on so many levels. Stop it.

Invisible isn’t imaginary.

Fibromyalgia can be an invisible illness. It doesn’t necessarily leave any physical sign of its presence. That doesn’t mean it isn’t real. If you don’t know what fibro is, 10 minutes on google will be illuminating. No one is required to answer your intrusive questions. Medical records are private for a reason. If you don’t understand the condition, don’t worry about it. Extremely well trained medical professionals do. As a person with fibromyalgia it is not our job to convince you of the severity of the illness. It requires zero effort to mind your own business.

Don’t judge my good days.

Fibromyalgia is erratic. I never know how I will feel when I wake up. Sometimes I can go from reasonably ok to excruciating pain in the space of an hour. I try to plan around fibro, but nothing is ever set in stone. I can spread out appointments. Schedule rest days. Make a timetable for essential tasks, but my body doesn’t care. It will throw a painful spanner in the works whenever it pleases. The fact that I could do X yesterday is no guarantee that I will be able to today. An outing that I managed last week could easily leave me unable to function for days another time. I want to live as full a life as possible. So, on good days I attempt to get things done. The fear of being judged solely on those days is horrible. I’m not faking symptoms to avoid things I don’t want to do. I’m not lying when I cancel plans. In fact, the opposite is true. Most of the time I underplay how bad I feel. If I were to vocalise every dreadful sensation I’d never talk about anything else. I know my illness is frustrating. I hate that I inconvenience so many people. Please, believe that I am I trying my very best.

Now everything’s cool as long as we’re getting thinner…

I had thought that the world being turned upside down might put a dent in diet culture. It seemed that having a real and very serious health issue to contend with would get our collective perspective in order. Turns out that was naive.

If anything, it’s worse. The fat phobia has amplified. It’s coming from new & unexpected directions along with all the regular ones. It’s demoralising to realise how quickly all those supposed body positive allies throw the fatties under the bus. People I respected didn’t take long to start posting the weight gain jokes. Support for my own & other fat activist’s work has begun to feel like a part of a cultivated image. One that cracks under any pressure at all.

When you joke about the horror of gaining weight in public forums it isn’t harmless. Not only does it perpetuate stigma towards fat bodies; you’re also telling fat people what you really think of them. If you like your smaller body I’m delighted for you. Enjoy it. However, if your only response to inhabiting a slightly larger form is mockery or revulsion, you are not a Bopo ally.

This applies even more in the current crisis. During a deadly pandemic that grinds entire countries to a halt there are many things to fear. If top of your list is weight gain you might want to reassess your priorities. I am the after picture in those hilarious memes. Looking like me is not the worst thing that corona virus could do to you.

Barber before & after quarantine meme

When I’m not disappointed by folk I expected better from I am bombarded by the diet industry. The weight loss world has never missed an exploitation opportunity. Diet plans & work out programme ads have multiplied. Disreputable influencers can’t wait to wring some cash of out skinny whatever collaborations. Millionaire celebs holed up in mansions are giving us food plans to guard against stress eating. Meanwhile regular people struggle to cope isolation, lost income & fear of critical illness. The focus on the waist line is gross.

I’ve saved the worst for last. The truly terrifying part; medical discrimination. In the wake of covid 19 fat has been pathologised to an even greater extent. BMI has been incorrectly identified as a risk factor for both contracting the virus & suffering more severe symptoms. Weight has been used as a disqualifying factor when resources are scarce. In other words, fat people have been deemed dispensable. I know we’re not alone. Other marginalised groups (some I also belong to) have been marked cannon fodder too. I am ready to fight for the rights of all those people. It’s startling how many members of those groups do not reciprocate my solidarity.

If you’re thinking the jokes & fears have nothing to do with the medical discrimination, you’re wrong. By partaking in the toxic diet conversation you help create a society that considers fat bodies to be less worthy. We live in a world that permits Drs to ignore research on weight & its implications. We accept inaccuracies & damaging advice because the majority still believe that fat is bad. Fat phobia is profitable and fat people are paying the ultimate price.

Black & white photo of plus sized women in knickers holding her breasts

We’d all love to see the plan…

Watching the seriousness of the corona virus sink into the general conscious has been a very strange experience. For the first time I am seeing healthy people get an insight into my life; en masse. It’s not pretty for anyone.

I want to preface this by saying this absolutely not an ‘I told you so’ (unless you’re a Tory, in which case, we did tell you so. Please do better). I really don’t want to see anyone suffering. I take no pleasure in the fact that a whole lot of people are about to share in the injustice & indignities that disabled people have grown accustomed to. It saddens me, but I suspect an awful lot of people are going to discover what we meant when we said this could happen to anyone. No matter how fit or successful, most of us are much closer to needing a safety net than we ever imagined before the fall.

Grlclb tories kill t shirt

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Anyone who’s ever had long term health issues already knows that most employers do not give a shit about their well being. The chronically ill are fully aware that our government couldn’t care less if we die. I know it is hard for able bodied, healthy people to grasp, but the powers that be are not concerned with making sure you can survive. It matters not that statutory sick pay isn’t enough to live on or that some won’t even qualify for it. Big business will prioritise their profit before your health. They’ll fire as many as needs be to plug a cash leaking hole. There will be backlogs because so many desperate people require help. The DWP & all the other faceless government machines will treat you like a subspecies. Boris & his buffoons don’t care if you can’t pay rent or feed your family. The underfunded NHS will buckle under the increased strain. They’re already telling us to prepare for our loved ones to die. Let’s be honest, most of the cabinet would be quietly delighted if the vulnerable are wiped out.

As always, those with the least will suffer the most. The rich will access tests & treatment that most of us cannot. They can afford to hole up in safety & comfort. They will profit from this global crisis. Private hospitals renting beds to the NHS, politicians insider trading, corporate bail outs for tax evading entities. It has to stop.

Reina sultan tweet

It’s already evident that the every day working people are relying on each other. The community spirit is admirable. I am so glad that people are looking after each other. However, it’s time we gathered that solidarity for change. Huge, impactful societal change. We must organise. In times of crisis it becomes clear that it’s the bottom of power tree that actually make the foliage bloom. Please let this radicalise you. Find the grassroots social movements in your area and get involved. Write to your representatives. Join rent strikes, sign petitions, vote when the times comes. Remember who stood with you during this pandemic. Let’s start elevating and rewarding the people we can trust to strengthen our safety nets.

Protest sign with capitalism kills more than corona virus

* you can buy this amazing t shirt here. (Not an ad)

I’ll be your mirror…

I’ve been thinking a lot about relationships lately. I’m preoccupied by the dynamics of my own romantic history, but also the societal norms. The things we tell ourselves, the advice we give and believe.

There are tropes I find easy to dismiss. I know you don’t need to love yourself to have others love you. Lots of warm, kind, excellent folk don’t like themselves all the time. Self doubt doesn’t make good qualities any less appealing. Obviously loving yourself is beneficial in countless ways. Whilst you’re working on it, you aren’t exempt from third party estimation.

I’ve never bought into ‘you’ll find them when you’re not looking’ thing. I found a few lovely people by actively looking. They might not have been forever, but they were good experiences. A couple I’ve kept around on a platonic basis. It’s always struck me as daft advice. The exact opposite of the accepted wisdom on goal achievement. We tell each other to put the work in when seeking career advancement, not to buy the first thing we like when making big purchases, practise hard to develop new skills and so on. If every other life enhancement requires careful consideration & applying ourselves why should we leave finding a life partner to chance. Sure, a meet cute is romantic; it’s just not all that realistic for most people. Very few things of value fall into one’s lap. Putting yourself out there appears sensible.

There are many more obviously problematic cliches. I’d love to bin that ‘if you can’t handle me at my worst’ nonsense. It lends itself way too easily to toxic situations. Everything happens for a reason is similarly flawed. You’ll drive yourself crazy with that one. Sometimes life is random & people are fuckwits, you cannot base decisions on chaos. Trust your gut is 50/50, lots of us have less than stellar instincts. Plenty of fish in sea, tonnes of utter garbage too. Love at first sight is usually just desire. We each have more than one soulmate and karma rarely gets involved in romantic entanglements. I’m sure you get my point. I’ve had my share of passion & I’m not buying the prosaic instruction.

If you can’t handle me at my worst, you probably have healthy boundaries in neon lettering

Or am I? I do find myself stuck on some well worn pearls. I can’t completely rid myself of the notion that how we feel about ourselves inform the partners we choose and how they treat us. Nor can I discount, we get the love life we believe we deserve. Perhaps these speak to my own experiences & mental struggles. I can see how that would make sense. I often think of myself as difficult. I’m uncompromising on many points, strident, damaged. I recognise I also have more endearing characteristics. Still, you could summarise most of my amorous affairs as complicated. Kind souls with simpler offerings rarely hold my attention for long. Out & out baddies are likewise swiftly disguarded. I learned early not to let anyone smash my heart to pieces. However, I will absolutely keep coming back if you make a riddle of slowly dismantling the pieces.

I think loving me is laborious, so I choose relationships with challenging dynamics. Can it really be that simple? I know my penchant for the fickle isn’t unique & many other unhelpful patterns exist. Believe me, taking all the blame isn’t a huge leap for me. On the other hand, wouldn’t establishing that as fact encourage the beliefs that started this? Confirming that one’s perceived maladjustment is the cause of failed romance seems to solidify those negative beliefs. That strikes me as sticky little trap.

I feel there has been a shift in the focus of romantic guidance we consume. These seemingly deeper insights are definitely well intended. I think we offer this advice because we want to protect people we care for & we believe it for self preservation. Having control is comforting. Thus it’s tempting to internalise blame. If you’re at fault, you can fix it. I’m just wondering if it all becomes a self fulfilling prophecy. When think we pick the wrong people and we accept the wrong behaviour, don’t we just lower our opinion of ourselves? I worry that just leaves a person open to more manipulation & ill treatment.

We accept the love we think we deserve in black lettering on pink background

It especially gives me pause because I see it most often aimed at women & people with mental health issues. It’s perplexing. On one hand introspection totally makes sense. On the other it plays into really unhealthy existing thought patterns. Basically I’m wondering if in the guise of taking responsibility we’re actually setting ourselves up to fail.

I’m in danger of going full Carrie Bradshaw with all the relationship pondering, but what do you think? Are there any wise (or not so wise) words that have had an impact on you?Carrie Bradshaw from s&tc with text ‘when it comes to life & love, do we accept our worst reviews’

Power to the people…

I’m utterly disgusted at the election results. Beyond that I am saddened & scared. English & Welsh working class voters supporting Tories is incomprehensible. To sell out hungry children, homeless & disabled people for Brexit is vile. The future looks terrifyingly bleak. Our NHS is in real danger & the most vulnerable people in our society are likely to persecuted further. I am grateful for the limited protection being in Scotland offers me. It has never been more clear that we need to be free of this rotten union. My heart goes out to all those who fear what the future brings under another Conservative government. More than ever we have to do what we can for those who will be left in need.

Easy ways to support your spoonie friend at Christmas…

I often share tips to help chronically ill people manage different aspects of their lives. However, sometimes the trickiest part of the spoonie life is dealing with how those around us react to our illness. This time I thought I’d give some hints to those who know & love a spoonie.

Please don’t give us a hard time when we cancel

This applies all the time, but especially during the festive season when there are so many events & parties. We know we disappoint you when we cancel. We aren’t sick on purpose. We can’t control our flares. Trust me, we really want to be there. We are sorry we’re missing your thing, particularly if it’s really important to you. It’s fine to say you’ll miss us or you’d have loved us to be there, but please don’t get angry. Try to consider all the times we do show up for you despite being in pain or dealing with other symptoms. We already feel more guilty that you can imagine & we are incredibly grateful that you stick with us.

White txt on pink background, my brains says let’s do something exciting today. My body says don’t listen to that fool.

Take our restrictions/limitations into account when planning activities

Disabled & chronically ill people can have a whole range of needs. We really don’t have a problem answering questions when they are considerate & relevant. If you take into account accessibility needs (disabled toilets, stairs, seats, dietary restrictions, crowds etc) it is much more likely that your spoonie friends can attend. More than that they’ll actually be able to stay for the whole shebang & enjoy themselves. It is actually much easier that you think these days. Many venues are happy to help you make accommodations or already have them in place. All varieties of specialised food are commonly available. Plus I for one am often happy just to know there will definitely be a seat so I can retreat if I need to.

Take no for an answer

If we say we are too ill, we mean it. It’s not an excuse nor the start of a debate. We’ve always thought out every possible variation before deciding we can’t make it. It doesn’t help when you say we’ll feel better once we’re out. We’ll feel much worse if we push ourselves too far. We know our limits & all our responsibilities; we are the best judge of what we can handle.

No comparisons

Please, I beg you, don’t do comparisons. Getting upset because we went to so & so’s birthday, but can’t come to yours is pointless. It won’t make us any more able to attend & will just make everyone feel worse. Chronic illness is a crap shoot. We never know how we will feel on any given day. We might have been the life & soul at dinner last week, had a ball with the wee ones on Tuesday & unable to move without crying on Thursday. There is no predicting how chronic illness will behave. The things we don’t attend is not linked to how much we wanted to be there.

Siamese cat on blue background with txt, no pain no gain. Chronic illness is not a competitive sport.

Bonus Tip

Don’t tell us we can do anything we put our minds to. We absolutely can’t & this is a shitty reminder. It’s not inspiring, it’s dismissive.

Your spoonie friend loves you. They are delighted that you are on their life and they are doing everything they can to be reliable & fun & supportive. Please cut us a little slack.

Welcome to my nightmare…

I didn’t sleep last night (shocker, right). Actually, I did kind of sleep. I was so dog tired by 11pm that I decided to try going to bed like a normal person. I read for a bit and much to my relief, I fell asleep. For about 45mins.

I was awoken by the first nightmare around midnight. By half three and the fourth nightmare I had given up on the idea of sleeping. Nightmares are the part of PTSD that I don’t really talk much about. Maybe because they are an intermittent problem. Probably also because it’s not something that people (in my experience) take seriously. Responses to my attempts to discuss my nightmares have ranged from vaguely dismissive to full on belittlement.

I think when I say nightmares people hear bad dreams. You’re probably thinking of anxiety dreams (teeth falling out, failing exams, getting fired etc) or standard scary dreams (trapped somewhere, being chased, really bad person creeping around your house horror movie type stuff). Maybe you’re even imaging those childhood bad dreams that are terrifying in ways that are incredibly specific to you. All of which are horrid, but not at all debilitating. I suppose I do understand why folk say things like ‘well, they’re not real’ or ‘as soon as you wake up it’ll be gone’; that’s their experience. Oh, how I wish it were universally true.

Creepy face

PTSD nightmares are a whole other thing. They are related to trauma. For me, they often mirror my flashbacks. Sometimes they’ll get creative and go abstract. I’m trying to get some rest and my mind will just be replaying amplified versions of the most distressing moments of my life. My head is a terrible editor; it just rapidly cuts from one horrendous image to the next. All of which are graphic. Blood and dead babies are the common denominators. They’ll begin in a very realistic & upsetting fashion and degenerate into gruesome bloodbaths (sometimes literally).

Blood splatter

As I mentioned the nightmares are a sporadic problem. They almost always have a trigger. That can be a really tiny thing that I possibly didn’t even pay that much attention to until it starts becoming a pivotal detail in my dreams. It can also be a major life event. My nightmares are usually accompanied by & linked to flashbacks in my waking hours. They always come in clusters. I never have just one upsetting dream. They plague me every time I close my eyes. All of which adds up to a significant disturbance.

The torment doesn’t melt away when I regain consciousness. There’s always more to come and it is real. Every scene is drawn from my reality. I end up scared to sleep and just as scared to be awake. I can’t be alone in this because nightmares are close to the top of every PTSD symptoms list. Any psych evaluation or questionnaire will ask about them. Yet, I don’t see much discussion of the topic. I include myself in that. It’s an aspect of my mental health that I feel really uncomfortable being honest about. I don’t know exactly why we’re all so tight lipped, but I’d bet stigma plays a part.

Sleeping ly

It’s always the messy parts of mental illness that we shy away from. Anything that feels uncontrolled or dark or too close to crazy is glossed over. Those who haven’t experienced it don’t want to think about. Those of us who have don’t want to deal with judgement. Where the nightmares are concerned I think there’s also an element of feeling stupid. Kids get frightened of bad dreams. It’s hard to shake off the feeling that you should be able to handle it. Especially when that’s the message the world is giving you.

I’ve yet to discover anything that’ll chase the dreams away. Sleeping pills aren’t helpful because they make the nightmares more vivid. Thankfully they occur less frequently than they used to. Keeping quiet certainly isn’t helping. Perhaps if people knew what I was referring to when I say nightmares they would be less patronising. A little empathy can go a long way, but you have to understand someone’s experience before you can offer that.