Educate don’t hate

*TRIGGER WARNING: mild homophobic abuse*

Something unusual happened to me last week. I had travelled into the town centre for an appointment, and then discovered that it had been cancelled. I was just sitting on a bench contemplating having to go straight home again, when I noticed a man slumped on the bench adjacent to the one I was sitting on.

I was just wondering whether it would be safe to approach him to see if he was all right (the problem with being a small, disabled woman on my own) when a man appeared and gently shook his shoulder: “Are you all right, mate?” The unconscious man whimpered a little, clenching and unclenching his fists. The man who had approached him looked at me. I took the initiative: “Shall I call an ambulance?” He nodded.

The upshot of all this was that, instead of going straight home, I ended up sitting with this poor gentleman waiting for an ambulance to arrive. At first, he was only whimpering, but after about ten minutes he started trying to sit up, despite my protestations, and eventually he did sit up and opened his eyes. It turned out he’d had an epileptic fit (in fact, he kept coming in and out of a fitting state for the whole time I was with him).

The point of this blog post is not to blow my own trumpet: look at me, the lovely woman who sat with a poorly man and waited for an ambulance. I actually did something rather stupid at one point, and this is what I am writing about.

As any of you who have read this blog before will know, I am very open about my sexuality and the fact that I am happily married to a woman. I tell everyone, coming out sometimes several times a day depending on what I’m doing.

Whilst I was sitting with this man (who I’ll call “P”), we naturally got into a conversation, although he was very confused, so it wasn’t a proper one. But, inevitably, he asked the question: “Do you have a boyfriend?” I could have just said “no”, but that’s not me. So, I said: “No, I don’t have a boyfriend. I’m married to another woman.” His response was quick as a flash: “Are you a f***ing poof?” with a sneer. My heart sank. Oh crap, I thought, have I just put myself in danger? He was very uncoordinated following his fit, but I reckoned he could still have punched me if he wanted to. What should I do/say next?

Then I remembered Rain Dove. Rain is a non-binary model and actress who I greatly admire and have followed on Instagram and Facebook for several years. They have a novel and extraordinary way of dealing with their trolls, of which they have many, and regularly post screenshots of their “chats” with their trolls on social media. I have been inspired by how, using straight talking and humour, they have often been able to diffuse horrible, abusive conversations, and sometimes change the troll into a follower. Their mantra is “Educate don’t hate”, which can have many meanings, but which to me means “stand up for yourself, be calm and see if you can change their mind about you”.

Here was an opportunity to put this into practice and see if I could make it work, albeit in a potentially dangerous situation. I looked P straight in the eyes and said, calmly: “Yes, I am. But that is not a nice way to refer to me.”

And then, something amazing happened. He started back a little, his eyes widened in surprise, and he said: “Oh, I’m sorry darlin’, I didn’t mean to upset you!” I breathed a sigh of relief. Incredibly, it had worked. By being calm and standing up for myself, I had diffused something which could have ended very badly. I am, of course, aware that it could have gone the other way, but I really hope it was my calm tone and clear and concise language which caused him to change his view, even if it was just about me. We ended up talking about how Dee and I met!

I’m not saying that this would work in every situation. I don’t believe P is a violent man, and I think the most likely thing to have happened would have been a tirade of homophobic abuse ending with him telling me to “f*** off” (something he was doing to anyone else who approached us anyway). But I’m really glad that I stood up for myself and the life I live.

If I had backtracked or capitulated it would have been completely understandable, given that I was a small, disabled woman on my own and pretty defenseless. But it would also have felt like I am ashamed of who I am and who I love. It would have felt like I’d given in to the haters and been what one lesbian friend once called “an instrument of my own oppression”.

It’s about time wider society accepted that we are here, we’re Queer, and we’re not going away.

[Disclaimer: If you are an LGBT+ person and you are ever in a situation like this, or worse, please think about your personal safety first. I was in a crowded high street in the middle of the day. Read the situation carefully and please don’t put yourself in danger.]

Posted in Activism, Educate don't hate, Equal marriage, LGBT, My Life, Social media | Tagged , , , , , | 2 Comments

Living with Fibromyalgia

In May 2019, which was International Fibromyalgia Awareness Month, I did a series of posts on my Facebook page, one for each day. In each one, I outlined a negative effect or symptom of this chronic illness and a positive way in which I was trying to deal with it. This was not to garner sympathy, but simply to raise awareness of the many and varied symptoms of fibromyalgia and to keep myself positive and looking forward. Somebody suggested that I should collect them all into a blog post (which could then be shared more widely) so here goes:

  1. Negative: I have lost my short term memory. I can’t remember anything. I used to have a really good memory so this is endlessly frustrating. I write things down and admit I’ve forgotten things as often as I can and explain why. Sometimes it’s quite good, as I can’t remember films or TV I’ve watched and get to watch them all over again as if for the first time!

Positive: I have to read much more slowly than I used to if I want to remember what I’m reading. So I get to savour books much more than I used to. I love to read, but can’t read for long without getting tired, so I get through fewer books but enjoy them much more.

2. Negative: I often lose my temper and politeness: this is not so much a problem I have generally, but more with Dee (my wife). Because I’m so tired all the time, I can often be irritable and/or fly off the handle. I also tend not to say please or thank you to her some of the time (usually on a bad day), which really upsets her. This was not normal behaviour for me before this condition came into my life, and Dee has found it very hard to deal with.

Positive: this has forced us to communicate more thoroughly even than we did before (and we were pretty good before). It’s made me feel terrible about myself, but it’s also forced me to look at this side of my personality (I am a control freak and can be very bossy) and try my best to notice what I’m doing and change it. This doesn’t mean it will never happen again, but I’m trying.

3. Negative:  I’ve lost friends. Sadly, when something like this happens, you really find out who your friends are. And sometimes it’s a surprise who sticks by you and who doesn’t. When I was first dealing with this I spent a lot of time moaning to friends and family. I’m not blaming the friends who have gradually disappeared from my life. I was very boring! I also no longer have the energy to keep in touch with people who don’t keep in touch with me. When everyone has busy lives, it’s easy to drift apart.

Positive: I’ve gained friends! I’ve developed some very important friends in the fibro & disability communities, both IRL and online. Sometimes, you just need to laugh or cry with someone who deals with the same or similar stuff to you. I’ve also developed deeper friendships with the old friends who’ve stuck around. I’m so grateful for all my/our friends. I/we couldn’t do this without them.

4. Negative: I’ve lost my concentration and comprehension. Concentrating is now an energy sapping task for me, and my brain has a tendency to skip off on its own to somewhere easier. I have to force myself back to the present. This is why I may say to you: “sorry, I zoned out for a minute there, what were you saying?” I’ve also lost the ability to comprehend anything too complicated. If I need to read an article or book which is on a difficult subject, I have a small window first thing in the morning, and even then I may well not readily remember what I read as little as 10 minutes later. I can’t tell you how frustrating this is!

Positive: I have more patience and tan increased ability to slow down a bit, and generally a better control over my thoughts. I’ve learned to slow down, ask questions, explain when I’m struggling to understand something and bring my thoughts back to what I’m supposed to be concentrating on. Practising mindfulness has been particularly helpful in this regard, helping me to recognise when I’m drifting off and bring myself back to the present. This has the lovely side effect of making me notice things more in the present (eg. birdsong, my cats purring, a beautiful cloud formation).

5. Negative: I will never again live a  life free from pain. This one is a little nuanced, as I’ve been in pain for most of my life because of undiagnosed cerebral palsy, meaning I missed out on any physiotherapy that might have been offered to me as a child. The difference with fibro is that the pain is more widespread and can increase anywhere at any time. Some days the painkillers work, sometimes they do nothing. If I mention I’m in pain then it generally means I am in a lot of pain, as when you have chronic pain you get used to living with a base level of pain every day, which becomes normal. I am in pain all the time.

Positive: through being offered courses in pain management and fibromyalgia self-management, I now understand the complex reasons why my body is in pain despite the fact that there is no injury. It’s all to do with my central nervous system not functioning properly and also the fact that I don’t get enough stage 4 deep sleep. Mindfulness helps with the pain sometimes too. All of these things I had access to completely free thanks to our wonderful NHS.

6. Negative: the big one –  extreme fatigue. Now when I say fatigue, I want you to understand what that means. I’m tired all the time. Not just tired actually. Exhausted. Some days I can’t even get out of bed, or if I do then I wander around like a zombie, forgetting everything, bumping into things, feeling like I’m wading through treacle. I drop things, I’m dangerous with sharp instruments or anything hot. It’s absolutely horrible and by far my worst symptom. Even on a good day, my energy is limited. Any task which requires mental or physical exertion can wipe me out. I could sleep all day and still feel like this when I wake up. I’m having a bad day today, and just writing this is making me feel like I want to lie down and go to sleep, even though I know that won’t help!

Positive: it’s hard to find something positive to say about this symptom. I’m trying out CBD oil to see if it helps. I’m lucky enough to be able to buy it, as it’s not available on prescription for fibromyalgia yet. Initial results are positive, but it’s still early days. I have learned to appreciate taking breaks to rest. I listen to podcasts and audiobooks and just close my eyes for a while. This does help.

7. Negative: I’ve had to stop doing the hobbies I loved. As many of you know, I’ve been a keen musician all my life, and before fibro hit me like a ton of bricks, I was playing my recorder with Stroud Morris Dancers and singing with Stroud Choral Society. I had to give them both up. SMD just became too full on, with evening practices every week during the off season and then folk festivals and pub dances etc all over the country during the dancing season. I find playing my recorder quite painful these days and of course it saps my energy, like everything else. SCS was a similar deal, with weekly evening practices and then big concerts three or four times a year. I found it painful to hold up the heavy choral scores, and the rehearsals move so fast and are so full on that I couldn’t keep up any more. And I certainly couldn’t manage a concert day, with an afternoon rehearsal followed by the concert in the evening. It’s broken my heart to have to give these two things up, and I also had to give up the small recorder group I ran, although I’m pleased to say it’s still going strong without me.

Positive: up until fairly recently, music was gone from my life and that was that. However, with a new found positive outlook after the fibro self management course I did, I am trying to do something about this. Yesterday, I booked myself into a half day Georgian singing workshop in Stroud in a few week’s time. If that goes well, then I’m going to try and find a small community choir to get involved with. I’m also seriously thinking about going back to my recorder group soon. Music has always kept me sane, so it’s important for me to try & find a way to do it without making myself worse physically.

8. Negative: my eyesight has changed dramatically. I don’t mean I’ve gone blind! One of the issues with fibro is the fact that every muscle in the body gets extremely tired very quickly. My eyes are one of the worst offenders. I get blurred vision almost constantly, particularly when reading or looking at screens. I have to watch TV with my eyes half closed & reading subtitles (I love foreign language dramas) is harder. It’s a rare day when I don’t get this symptom.

Positive: again, audiobooks and podcasts are my saviour here, as I can close my eyes and rest them while I listen. I’ve listened to some incredible things over the years. My optician also does her best to help me with slight adjustments to my glasses lenses, which does help.

9. Negative: my pelvic floor no longer responds to exercises the way it used to. Most women my age suffer from stress incontinence (wetting themselves when they cough, sneeze, jump etc). I’ve had this all my life thanks to that undiagnosed cerebral palsy I mentioned before. Over the years it’s got worse, but when fibromyalgia came along it got really bad. I do pelvic floor exercises every day, but to be honest, they don’t make much difference. It’s so bad that I have to wear pads like nappies every day.

Positive: after seeing a urogynaecology nurse practitioner recently, I know that my bladder is working fine. It’s just that the muscle gets tired because of fibro. She is the first person I’ve seen who’s identified that. I could have fairly radical surgery to help, but I’m not keen. She suggested a device which I can insert vaginally to support the neck of my bladder. I’ve not been prescribed one yet, but I’m really hoping it will help. Surgery will be my last resort.

10. Negative: lack of temperature control. This has something to do with the hypothalamus not working properly. I am always boiling hot. I can’t remember the last time I wore a jumper & felt ok in it. I also sweat excessively. It doesn’t smell, but I’m hyper aware of it & it’s so embarrassing.

Positive: I was recommended Starflower Oil and I take one capsule every day. This has reduced the sweating considerably. If it’s a hot day I may change my top a few times. I make sure I wear breathable fibres (absolutely no acrylic or nylon fabrics). Above all, acceptance that this is how it’s going to be has helped. I’ve stopped fighting it. Dee and I still have a tussle twice a year over when the heating should be turned on or off! She’s a very cold person, so it’s not unheard of for her to be sitting there in three jumpers while I’m in a tee shirt! 😂

11. Negative: I’ve lost my independence. I’m unable to drive because of my cerebral palsy. Before fibro, I would regularly walk down a steep hill to the bus stop & go into town for appointments on my own. Fatigue and deconditioning of my muscles due to lack of exercise means that a trip into town on the bus is now impossible for me. By the time I get there, I’d be too exhausted to get home safely, let alone do whatever I’ve gone in to do. So I’m now dependent on Dee & taxis to get around. I hate it!

Positive: I have started doing regular hydrotherapy to recondition my muscles & also doing short walks as many days as possible to help too. I have a vague plan set out in my head of where I want to get to fitness wise, but I’m determined to take my time & change the plan along the way if necessary. I’m determined to get back on that bus! 🤞💪

12. Negative: Having to cancel plans. This happens so often! Because fibro is an unpredictable condition, symptoms can flare up at any time. I’ve lost count of the number of times I’ve had to cancel theatre trips/plans with friends/my plans for my day etc. Some days, all I can manage is to get out of bed and get dressed. Some days, I can’t even manage that. And I never know how I’ll be from one day to the next.

Positive: this used to really get me down. We’ve lost so much money on tickets that I’ve now lost count. But I refuse to stop booking things, because I want to live my life, not just exist. Most of our/my friends now understand that I may have to cancel at the last minute and are very accommodating. A lot of them have long term health conditions themselves, so they get it. I always explain and am very open about all aspects of fibromyalgia (as I hope this series of posts is demonstrating). Now, this particular problem is still very annoying, but I try not to get too frustrated. I keep reminding myself that I am doing my best and that’s what counts. 💪

13. Negative: Anxiety. I’ve always had mild anxiety, but now it’s much worse. Sometimes it can actually stop me doing things because I just don’t feel safe. Like everything with fibro, it’s totally unpredictable, although I have a few triggers, like doing something new or something I’m not confident about, or doing something on my own when I’ve always done it with Dee.

Positive: Mindfulness has been the biggest help with this. I have learned to stop and take a breath (or several) to ground myself. Dee is also good at recognising it, as she suffers with it herself, and she’s great at grounding me too.

14. Negative: I’ve had to stop working. I never had a career as such, but I did spend five years training to be a bookkeeper. I set up my own business after I qualified, but I couldn’t work enough hours to turn any kind of profit. I was exhausted all the time, and I found it difficult to concentrate. Eventually, I started making mistakes, and when you’re dealing with other people’s money, you can’t afford to do that. After two years, I closed my business and I haven’t worked since.

Positive: what I’ve always wanted to do, in my heart of hearts, is write. I tried to make a go of it a while ago, but it’s a tough business to get into and I just found myself working quite hard for no pay.
I have a book that I’d like to write, and as we are now managing on Dee’s pensions and don’t 100% need me to work, I’m intending to have a go at writing it. I need to do a lot of research, for which I’ll need money, but I’m hoping to set up a Patreon account and see if I can get people to fund it, as it’s an interesting subject. Watch this space for more details…💪

15. Negative: I have to plan EVERYTHING! This is one of the most irritating aspects of this condition. Literally every day has to be planned. In fact, I use the three Ps: planning, prioritising and pacing. Let me give you an example. On Wednesdays, I have two regular important appointments which can’t be moved (although they can be cancelled). Say I need a doctor’s appointment. Due to our overstretched NHS, these are like hen’s teeth, particularly if you want to see a specific GP, which I prefer, as this condition requires someone who knows you & how it affects you. Now, the next available doctor’s appointment is on a Wednesday morning. In order to cope with doing this, I have to cancel one of the regular important appointments. There is no choice. I won’t be able to manage all three and not crash the next day. As it is, I tend not to arrange things for Thursdays as I am always exhausted after those two appointments. If you project this example across my whole life, you can see how difficult it is.

Positive: I can now manage two things in a day. For a long time, I could only manage one. Obviously, it depends on the intensity of the thing I’m doing, but generally I can manage more than one thing in a day. I have also got really, really good at this planning thing! If someone asks me if I want to do something on a specific date, I now automatically check two days on either side to see what I’m doing on those days and roughly how tired I’m likely to be and how much pain I’m likely to be in. Most of the time, I plan well & don’t cause a flare.

16. Negative: Medication. Lots of it. As is common with fibro, it’s not the only condition I have, so I’m already on medication for hypertension, underactive thyroid and type 2 diabetes. I’ve been taking daily painkillers since my teens, but fibro has stepped this up to the next level! As is common with a condition which causes widespread pain, over the years my GP had given me more and more pain relief, to the point where I was taking a ridiculous amount each day, all of which had side effects which in some cases meant I needed more medication to control them!

Positive: This was clearly an unsustainable situation, but when you’re in pain, thinking about coming off any painkiller is very scary. It wasn’t until I did the fibro self-management course in January 2019 that their advice gave me the courage to try and come off some of them. I am happy to say that I have completely stopped taking two tablet and am almost off another. There has been an increase in my pain, but I’m introducing another medication which is proven to be much more effective for fibro pain, so I’m hopeful that this will help.
I’ve also found that CBD oil is making a big difference to my pain levels. I’m already taking considerably less tablets every day. 💪😍

17. Negative: my relationship has suffered. It’s been a bit of a roller coaster. Because I’m so tired all the time, I’m not so good at listening, I tend to snap easily over usually trivial things and I’m inclined to give orders sometimes! We were one of those sickening couples who never row, but there’s been quite a few since I was diagnosed. It’s been hard for Dee to be catapulted into the role of carer, the one who deals with everything I can’t manage & the one who keeps an eye on me when I’m doing something where I could hurt myself or damage something.

Positive: the only way to deal with this is to communicate like fury! It helps that we’ve always been good at this and that we are both having counselling, which allows each of us to clarify how we feel. We’re still very much in love & that helps us through a lot.

18. Negative: having fun is hard. This is an extension of the planning post. We plan fun things into our calendar as much as possible, but every one where I know it’s going to sap my energy and/or cause me pain is difficult. I never really fully look forward to anything. I will be worrying about how it’s going to affect me even as I look forward to the fun. Sometimes, I have to forgo things because I’m just too “busy” that week & need to make sure I get enough rest. I write “busy” because busy for me is not busy for an average person!

Positive: mostly, once I’m doing the fun thing, I enjoy it. Every fun event is good for my mental health, so I keep scheduling these things to avoid depression and anxiety setting in. Any long spells with nothing fun happening have a tendency to end in bad mental health periods.

19. Negative: I’ve become much less articulate. I’ve always been a chatterbox and have prided myself on my ability to be very articulate when speaking. This hasn’t completely left me, but it’s much harder now, as there are days when I can barely string whole sentences together. I forget what I’m talking about mid-sentence, I can’t think of the words I want, sometimes I even say completely the wrong word without noticing or without meaning to. This is all due to the infamous brain fog and it’s so frustrating!

Positive: when this first started happening I would get really frustrated and sometimes even shout at my stupid brain. Now, several years later, I’m calmer. I’ve realised that the more frustrated I get, the worse the problem is. So I’ll laugh it off if I forget what I’m talking about. Or I’ll take a deep breath and wait for my brain to remember that word I’m searching for. Most of my friends and family understand what’s going on and are patient with me. With my fibro friends, we’re all the same, which can lead to some hilarious conversations! Laughing about it is definitely the best thing to do, and it helps with the frustration.

20. Negative: I have to lie about how I am all the time. This is nobody’s fault. I just can’t always tell people how I’m really feeling, partly because I don’t want to think about it, partly because I don’t want to bore them, and partly because sometimes it’s just not relevant to the conversation. I pretend I’m well to stop people worrying about me too. It’s hard to feel ill every day of your life, but people don’t need me constantly going on about it and neither do I!

Positive: bizarrely, this is also a positive. Lying stops me from dwelling on what my life has become. It allows me to do whatever I’m doing when people ask, without thinking about how I’m feeling now or am going to feel later. However, this is where I need my fibro friends most. They really understand what this is like and I know I can talk to them about my symptoms and how I’m feeling about them and they won’t get bored or overwhelmed. If you really want to know how I am, wait for me to say “I’m fine” and then say: “yes, but how are you really?”

21. Negative: Crash days. I have these regularly, and they are horrible. Despite sleeping for about half the day I still feel like I’m wading through treacle, and my pain levels are through the roof no matter how much pain relief I take. I don’t sleep well because of the pain. Crash days take at least a couple of extra days to recover from, and sometimes they can be the beginning of a flare, meaning the same symptoms for weeks or even months.

Positive: I’m learning self care. Crash days require me to be very gentle with myself and accepting of how I’m feeling. It’s very hard not to fight it and try and “keep going”. When even sending a text message is exhausting, all you can do is go with what your body is telling you. Sleep, watch TV to take your mind off the pain, use mindfulness. Whatever it takes to keep calm, because being frustrated only makes things worse.

22. Negative: I’ve become extra clumsy! I’ve always been quite clumsy, but fibro takes it to a new level. I’m constantly dropping things (thank goodness we have soft flooring throughout our house or I would have broken every piece of crockery we have), bumping into things, tripping over things (including my own feet). This is worse on bad brain fog days in particular.

Positive: tough one. I guess I’ve learned to take my time and concentrate on what I’m doing. I also allow other people to help more. Dee now always carries trays, for example, after an horrific incident at a Harry Ramsden’s in a motorway services, where I basically threw our entire meal onto the floor! 😂

23. Negative: Irritable bowel syndrome (IBS). Don’t worry, I’m not going to go into any detail! This is a common symptom of fibromyalgia and many people suffer with it much worse than I do. I have to be careful about what I eat. Fatty foods make things worse, as does stress and anxiety. I get a lot of acid indigestion, which means horrible sulphurous burps.

Positive: I’ve found that reducing the amount of gluten I eat has made a big difference. I’ve had far less tummy upsets since I cut it out of my daily diet. I can have it occasionally. I dream about nice crusty loaves of real bread!

24. Negative: I sometimes have trouble swallowing. This has been going on for years and I’ve had to do a barium swallow test (they scan you while you swallow barium, which is a liquid that shows up on scans), but as it’s solids not liquids that I struggle to swallow, I wasn’t surprised when nothing showed up. I now believe that this problem happens when either my throat muscles are very tired (usually on bad days or if I’ve been doing a lot of talking) or the muscles are very tense because of pain. I’ve got very good at discreetly regurgitating food & chewing it a bit more before swallowing it in smaller amounts, which usually helps. Sometimes I do choke, which can be pretty scary.

Positive: I’m trying to eat my food more mindfully. I tend to eat very quickly and fill my mouth with food. So eating smaller mouthfuls and really chewing them and savouring them properly helps me to slow down and I’m less likely to have trouble swallowing.

25. Negative: it can be very hard to find the right GP. Sadly, there are still far too many doctors out there who don’t “believe” in fibromyalgia. One of my friends was told it is a “dustbin diagnosis” and to go away and get on with it. Without a supportive GP, it’s hard to get the right medication. I had painkillers chucked at me willy nilly for years, to the point where I ended up on far too many and suffering because two of them actually counteracted with each other.

Positive: thankfully for me, I now have a very good GP. He understands that fibro is a real, physical illness. He agreed to refer me to the self-management course in Bath (which is considered to be one of the centres of excellence for fibro in the country) and he is actively helping me cut down my pain relief & introduce other medication which should work better for my particular type of pain. He takes me seriously when I present with new symptoms and always checks to make sure that nothing else is going on before attributing them to fibro. How lucky am I?

26. Negative: the weather can affect my symptoms. And when I say “weather” I don’t necessarily mean temperature, although that does play a part. Pressure changes and changes of season can affect it too. For example, yesterday the pressure changed in the atmosphere and it became colder and wetter. My pain levels went up considerably yesterday and I was totally exhausted. The worst time, however, is definitely the change of season between summer and autumn. September and October can be dismal months. Last year I had a massive flare and was struggling to even get out of bed for weeks.

Positive: I’m a little more prepared these days. I’ve also stopped panicking when my symptoms get worse. I remind myself that I’m not going to die and that I’m lucky enough not to have to work, so it doesn’t matter if I’m incapacitated for a few days/weeks. It’s still horrible and annoying, but I know how to cope now.

In summary: Fibromyalgia has changed my life forever, but I’m doing my best to remain positive and forge a new life along with my condition, not fighting with it as I have been for a long time. This list is by no means exhaustive and there are other symptoms, some of which I suffer from and some of which I don’t.

I hope that if you have fibromyalgia, then this list will help you to know that firstly, you are not alone, and that it is possible to live a life with fibro, even if it feels impossible now. Don’t be too hard on yourself, and try to fight for every bit of help you can get.

If you are reading this as a friend or family member of somebody with fibromyalgia, then I hope this has given you an insight into what those of us living with the condition have to deal with on a daily basis.

Posted in Disability, fibromyalgia, Health, Mental Health, My Life | Tagged , , , , , , | Leave a comment

Frida Kahlo and the politics of disability

Frida Kahlo Self-Portrait with Necklace

Self-Portrait with Necklace – Frida Kahlo 1933       © 2018 Banco de Mexico Diego Rivera & Frida Kahlo Museums Trust

Recently, I visited the “Frida Kahlo: Making Her Self Up” exhibition at the Victoria and Albert Museum in London. This exhibition comes as a result of a small treasure trove of Frida’s belongings and photographs being opened to the public fifty years after her death, in 2004.

I had seen plenty of press coverage of this exhibition, and what stuck out for me, as a disabled woman, was that here was an exhibition which spoke fearlessly about disability, something which is rare in the art and exhibition world.

Frida Kahlo contracted polio at the age of six, which left her with one leg shorter than the other, giving her a pronounced limp. Then, when she was eighteen, she was involved in a serious bus crash, which left her with multiple serious injuries, in particular to her spine, and made her infertile.

As a result of this accident, she was forced to spend many years of accumulated time during the course of her life lying immobilised in bed. Her family decided to put a mirror above her bed and create an apparatus which allowed her to paint, and the world is a better place for the surrealist, deeply personal art she produced. She painted herself into many of her paintings, and part of their beauty is that you can see her suffering and her determination painted into them.

Not only was Frida a disabled woman, she was also a woman of colour, a Mexican nationalist who was proud of her Mexican and Indian heritage (through her mother’s side) which gave her the striking looks you can see in the portrait above, with the large connected eyebrows and the facial hair. This intersectionality, I believe, caused Frida to develop a pragmatic attitude to her painting and her appearance. Like many disabled people, she wanted to present a “healthy” and strong front to the world, and her ethnicity led her to choose to present herself as a proud Mexican woman, wearing the traditional Mexican clothing of her era, and always having flowers woven into her hair.

One of my friends, Naomi Young, wrote a blog post after her visit to the exhibition. She found the whole thing prurient and voyeuristic; finding that looking at Frida’s painted plaster casts (Frida spent many months of her life in full body casts) and prosthetics made her feel like she was intruding into an aspect of Frida’s life which the artist herself chose to keep hidden from view. I see her point, but as a disabled woman, I do not entirely agree.

I suffer from a condition called fibromyalgia. I am not going to explain my symptoms here, but my disability is hidden (there are no outward physical signs that I am unwell) and I spend a lot of my time putting on that “healthy” front to the world, just as Frida did. I also refuse to allow my disability to stop me living my life, just as Frida did.

The problem with doing this, however, is that most people don’t know that I am suffering, and even some of my close family and friends don’t see how much I struggle on a daily basis. They ask me how I am and I say “I’m fine, thank you”, but very few actually see past this and ask “No, how are you really?”

Many people with chronic disabilities such as Frida and myself are forced to spend large parts of our lives hidden away at home because we are too sick or immobilised (as in Frida’s case) to go out. This can lead to feeling isolated, lonely and invisible.

In 2016, in London, there was a protest called “Millions Missing”, where hundreds of pairs of shoes were placed on the pavement, with labels naming their owners. This was a protest to highlight the many people who suffer from ME (myalgic encephalomyelitis) or chronic fatigue syndrome and who are so badly bed-bound that they are simply missing from society.

Going and seeing this exhibition, I hope, will give people a better realisation of what those of us, like Frida, who must hide our disabilities, go through on a daily basis, and I also hope that people will come away with more sympathy towards disabled people. Hate crimes against disabled people have risen considerably over the past few years, and exhibitions like this help to take away the stigma around disability.

Frida Kahlo wrote: “I paint self-portraits because I am so often alone.” Most of all, this exhibition helps me (and many like me) feel less alone.

 

 

 

Posted in Activism, Body Image, Disability, Health, LGBT, Mental Health, My Life | Tagged , , , , , , , , , , , , , , , | 2 Comments

Cutting Loose from plastic reliance

I have been asked to write occasional blog posts on behalf of Transition Stroud, a group which aims to make the Gloucestershire town of Stroud, where I live, as green and carbon-neutral as possible.

My first piece is about “Loose”, a new and groundbreaking shop which has opened in Gloucester Street, Stroud to sell food and other goods completely free from plastic or plastic packaging.

There is a revolution happening around the world right now, inspired by horrific reports on the news, posts on social media and television programmes such as Blue Planet II, to begin to rid the world of plastic, and in particular single-use plastic.

We have been horrified by reports of baby sea-birds dying of malnutrition, because their stomachs are full of brightly-coloured bits of plastic which their parents picked up, believing them to be the similarly brightly-coloured fish and other sea creatures which their babies feed on; and others of large floating islands of plastic waste way out at sea, sea creatures caught in discarded six-pack rings, rivers choking with our discarded plastic waste…and the list goes on and on.

One Stroud resident, Julie Brown, had the idea that she (and by extension, the people of Stroud) could make a difference, so she set up a plastic-free shop in Stroud.

Loose, situated at 25 Gloucester Street, has gone from strength to strength since it opened back in April, selling a large and ever-growing list of plastic-free groceries and other items, including plenty of dried goods such as pasta, rice, nuts and even popping corn, alongside other innovative products like toilet rolls from Who Gives a Crap, which come wrapped in paper, and a local range of cosmetics which come in cardboard packaging. Click on the link here to see the full list, which is updated regularly. As much as possible of their produce is organic and Julie and her friendly staff are more than happy to talk to you about where she has sourced her products.

At first, Loose was run on a self-service model, meaning customers came in with their containers, filled them up with what they wanted, and took them to the till. However, as Julie explains:

“In this tiny space, it just wasn’t working. It was chaotic. I don’t think the customers even liked it.”

This is when her friend Tom Gillett, who runs Stroud Cook Club had the brilliant idea (and provided the physical manpower) to change the shop around and allow Julie and her staff to serve the customers with their goods instead. This has made the shop a lovely place to be in. It reminds me strongly of visiting the old-fashioned high street grocer as a child, with produce being weighed out by hand and then put into paper bags or your own container.

And Julie doesn’t balk at customers bringing in plastic bags or other plastic containers either. As long as they are being re-used or re-purposed, the more the merrier. When I was in there, one lady took her rice away in an old plastic bread bag, while I was using some old plastic ice-cream boxes.

The response in Stroud has been great, according to Julie:

“I jokingly said to someone recently, that if all that comes out of this is the people that I’ve met, then it will be worth it for that alone! I’ve met really lovely, enthusiastic, supportive people. I can’t say there hasn’t been any negativity, because that wouldn’t be realistic, but mostly really positive.”

As far as traffic through the shop is concerned, however, progress has been slow. When Julie first set up the Facebook page (before the shop even opened) there was an incredible buzz created, with over 6000 views and loads of “likes” and “shares”. But, sadly, this doesn’t seem to have translated into many actual customers.

“It’s very early days, and I don’t know what a realistic expectation is,” says Julie, “I have about ten regulars now, for whom it’s part of their shopping routine.”

And this is the crux of the problem: people need to get it into their shopping routine. If we want to make the changes that will pull us back from our current reliance on plastic, they are not going to be convenient. We’ve been seduced by the convenience of single-use plastic, and we need to break the habit.

Meanwhile, Julie has big plans for the shop:

“The more we sell, the more we can stock, and the cheaper we can sell it. People have asked me for herbs and spices, different oils and vinegars and all sorts of other things, but until I’m shifting more stock, I can’t afford to buy new items.”

Once Loose can get the customers it deserves, our community will have access to really affordable, organic food and other staple goods and not a piece of plastic shrink-wrap or a six-pack ring in sight.

So come on, people of Stroud, let’s get behind this great little business and help it grow. Our town and our planet will thank us.

Posted in Climate Change, Natural Disasters, Reducing food waste, Reducing plastic waste, The Planet, The Universe, Transition Stroud | Tagged , , , , , , , , , , , , , | Leave a comment

A genderless future

 

The other day, a friend posted the above video on her Facebook timeline, with a comment which was not positive. After some comment discussion, it turned out she felt that male and female identities were being eroded by the steady drip of non-binary narrative, which she saw as promoting non-binary identity and denigrating binary gender identities.

I can understand this feeling. Asia Kate Dillon (the non-binary performance artist who appears in the above video), in their insistence that the Emmy awarding body come up with a gender neutral award category for their award for their non-binary part in “Billions”, seems to be being hostile and nit-picking.

However, in my reading about non-binary identities and non-binary people this is far from the truth about their campaign for recognition. Think about it this way – for many years, bisexual people have fought for a true identity which does not label them according to the gender of their current partner. This has been a long and difficult struggle but, slowly, bisexuality is coming out of the shadows, shrugging off prejudice and making its voice heard.

The same goes for non-binary people. They identify with both genders, or neither. Labelling them according to appearance or genitalia makes them feel as if they are not fully themselves. Just as a pre- or non-operative transsexual woman feels she is a woman despite her male genitalia, a non-binary person feels that they are neither gender completely, and so are increasingly refusing to be categorised as one or the other.

However, here we do come upon a stumbling block, in my opinion. If non-binary people can persuade awarding bodies, be that the Emmys, Oscars, Olympics etc to become gender neutral, then we hit the thick glass wall which is misogyny. Don’t we just know that if there was a “Best performance in a leading role” category, instead of “Best Actor” or “Best Actress” it would mostly be won by straight, male actors? After all, white, straight men make up the majority of all awarding bodies; and they make up the majority of actors too.

I would love to see the day when athletes are chosen according to their size, strength etc, rather than their gender identity. I would love to see gender-blind categories at awards ceremonies. However, until we as a society become more equal and accepting (and here I am talking about gender, sexuality, race and really anything else that’s different from the straight, white norm); until we are prepared to educate ourselves when we encounter something we don’t like or understand, instead of instinctively reacting defensively and angrily, then I don’t think we’ll ever get there.

All we can do is keep fighting and educating as best we can, and continue to dream big.

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Living with an invisible disability

I read a letter in our local paper recently, in which someone was complaining about what he called the “misuse” of the disabled Blue Badge parking scheme. He claimed to have seen many people, with Blue Badges, park in our local disabled car parking spaces then “leap out” of their cars and “stride” into town.

Now, I have no doubt whatsoever that there are some people who misuse Blue Badges. Someone might be a carer or relative of a Blue Badge user and use it occasionally to make parking easier (this is a criminal offence – I think some people are not aware of this fact). There will also be some people who are such good actors that they’ve been able to pull the wool over the Blue Badge assessors’ eyes, or whose condition has improved since they obtained their Blue Badge. The former reason is less likely, in my opinion, as I have attempted to get a Blue Badge and believe me the assessors are harsh. I didn’t get one.

However, there will be even more people who have a hidden disability. If you saw me get out of a car and walk away, you would not for one moment think I had mobility problems, particularly on a good day. You can not see the pain I have to ignore to get up and walk. You don’t know that I can only walk a relatively short distance before I need to rest or stop. I don’t use a stick or crutches. I don’t use a wheelchair. In order to lessen my pain, I have to walk fairly quickly, as walking slowly is agonising. Perversely, not walking is worse for my general pain levels, so I will often walk despite my pain because, in the long run, it helps.

Over the years, I have come across a lot of “disable-ist” thinking. One of my former clients, on being told I had a disability, was shocked when I turned up to our first meeting without a wheelchair. For him, disabled meant wheelchair-bound. I often describe myself as disabled and get looked up and down with disbelief. And I know there are thousands of people like me out there, living life with pain, deafness, mental health problems, learning difficulties, head injuries…the list goes on and on.

For me, one of the most disabling aspects of my conditions (which are chronic pain in my back, legs, shoulders and neck plus a mild form of cerebral palsy) is the fatigue. People who are not living life with a chronic illness can not understand the amount of energy it requires to get around each day. At the moment, because my neck and shoulder pain has flared up over the last nine months or so, I am so tired by the energy needed to get up and get dressed that I have to go back to bed for an hour afterwards. This lack of energy has been brilliantly explained by something called The Spoon Theory , which was written by a woman in the USA who is living with chronic illness. I would recommend that everyone reads this theory, as it explains so well the way chronic illness affects your energy levels and how those of us who live with this have to plan, prioritise and pace everything we do. On the excellent Pain Management course I attended some years ago, these were referred to as the three “Ps” , and they rule my life.

For example, tomorrow I have work in the morning (I can only manage three hours a day each weekday or my body lets me know!) then I am meeting a friend for lunch. I will then have the recorder group I run come round to my house in the evening for a vital rehearsal before a performance this weekend. I try not to let my disabilities stop me from enjoying my life, so in come the three “Ps”.

I have made sure that I have nothing to do this afternoon or evening. I will probably go for a walk, but other than that I will do restful things, such as napping, colouring (which really helps me destress), reading and watching TV. I may well go to bed early. Tomorrow, I will probably limit my work to two hours (I work from home, so can be flexible). I will then go out with my friend. This is always good for my mental health, but exhausts me physically, so I will come home and sleep for at least an hour. I will then chill out (as above) until my recorder group arrive, another activity which I love to do, but which exhausts me physically. Once they leave (around 8pm) I will probably go to bed. If you read this last paragraph back, you can hopefully see that I have used the three “Ps” as effectively as possible, leaving room for the other thing which I learned at Pain Management, which is that “some things are worth it”. I will be more tired on Wednesday, but seeing my friend and running my recorder group will be so good for me personally that it will be worth it.

Every day of my life has to be planned this meticulously, every activity I add to my diary carefully weighed against any other activities I have that day/week. Sometimes, I have to cancel things I wanted to do because I have things I have to do, and I can’t do both. Then there are the days when I wake up so tired or in so much pain that no activity is possible, making me an unreliable friend and meaning I may have to cancel some other things later in the week to allow me to fit in essential activities (such as work) that I am not able to do that day.

S0, next time you see someone with a Blue Badge get out of their car and walk normally into town, don’t assume they are swinging the lead. They may well be living with an invisible chronic illness which means they really need that badge. In this time of increasing polarisation and a “them and us” mentality, please think before you judge.

 

Posted in Activism, Disability, Education, Health, My Life, welfare | Tagged , , , , , , , , , | 1 Comment

So. You want me to be happy?

On Friday morning, I was given notice that my EU citizenship will be taken away. The house in the sun – the one that I planned to retire to – is no longer for sale. My 2-year-old son wi…

Source: So. You want me to be happy?

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