remedies and respites 1/2

Looking back, I find I haven’t written a post on the oxygen therapy that has been making such a difference for me – partly because I have been out doing things probably!! I thought it might be useful for anyone considering what might help them cope with a chronic illness if I shared how I choose what works for me – because the MOST important thing I can share is: it is different for everyone.

Please don’t despair if you are having your worst year – a lot of people are, the general atmosphere [Tories winning the election, disability benefit disasters,  Brexit disaster for the economy] has been grim, even though we had a hot summer – suits me, but not everyone, friends with migraines were down and out, pollen allergies ditto and CRPS peeps found the heat hard.. now we’re on for a cold winter, which should hopefully kill some of the germs lurking, but sets neuralgic pain off bigtime.. that’s why I’m writing this, actually, the pain in my leg is spiking and the pain killers aren’t doing anything so I need a distraction…

I divide my health management into remedies and respites – respites are distraction activities and also affirmation activities, reminding me who I am and why I keep taking the remedies 😉

REMEDIES

I am very lucky in that certain medications work very well for me [my heart aches for Jay who has worse pain and no/very few painkillers] and after a year lost to tweaking meds and trying ineffective drugs, be aware it can take a long time to get this right for the unique being that is YOU. Reading any Fibromyalgia discussion thread will make you realise one woman’s lifesaver sends another into a crash… remember that, next time the doctor struggles to get the right one for you – they are trying, we’re just all different, very VERY different in how we respond.

CHIROPRACTIC  My life kind of revolves in fortnights – because that’s when I see a chiropractor. I am incredibly lucky as my late husband and I used to swap art and organic, biodynamic produce from my allotment for his and then our treatment, and when Andy died, I broke 2 ribs and my collarbone and basically everything changed in what I could do. I was diagnosed with fibromyalgia 15 months later, so they all seem bundled up to me. Anyway, I made a superb pair of quilts for the chiropractor to say thank you and since then he has been treating me with no barter [I am an interesting patient 😉 always be the most interesting patient you can, all kinds of good comes from it 😀 ] and as he manages the practice, he sees me once a month and does this amazing neck unlock that means I see clearer and feel less pain for at least a week, like sometimes only Gabapentin and no Dihydocodeine!! Yay!! The other chiropractor sees me the other fortnight – I do take him a bag of baked/cooked goodies cos I really appreciate him adding me to his list and he eats stuff I can cook for. [I used to do catering, so making more is easy for me] Anyway, he gives me 5 mins of acupuncture on my neck and the activator [a sort of gun that sends air in pulses and makes your muscles etc shift] on my back ribs [ow!!]  and collarbones [yowwww!!] Yes, it hurts, for a few seconds, but oooh, the pain relief afterwards..and it has this side effect – I feel ridiculously happy/ good natured/ positive!!! I’m already a bit that way, I’m a relentless optimist, but wow, the treatment really helps.

This brings me to a significant point – managing MOOD can be as important as managing most other symptoms put together. I don’t mean insulting mind over matter stuff from the woo woo merchants, to whom I feel such anger when they insult people in huge pain by suggesting some chanting…but if you can feel the least bit positive, hopeful, constructive, peaceful or content, it really helps cope with the damage that chronic pain causes, the grief for the life you lost, the friends you have to disappoint, the missed opportunities, the tiredness, all that…

It gets really important to weed out activities and people who don’t get it – they will drive you round the twist. Some can be sent reminders that links to chanting sites are NOT helpful and an allies 101 post sent for THEM to read. Some, like in-laws, can be trickier, your own family even more so. I have no advice for that, as I estranged myself from my family of origin when it was a choice of my sanity or their denial. Daoist ‘bad thing, good thing’ – I see so many comments from people struggling with hateful attitudes from blood relatives…what has worked for me in general is to set boundaries, to coach people how to help me and to pay for services that would be awkward to ask for. Where do I get my confidence?  Well, we are the EXPERTS on what works for us. If you have just been diagnosed, believe me, noticing or keeping a diary for a few weeks will get you clear what tires you out/ brings on pain very quickly. Can be useful to show disbelievers btw! Also, I grew up in a dysfunctional family [bad thing/good thing again] so decided to learn how to raise myself right.. lots of books, meetings and thousands of therapy hours under that bridge 😀

OXYGEN THERAPY I  read this article

http://www.news-medical.net/news/20150603/Women-who-suffer-from-fibromyalgia-benefit-from-hyperbaric-oxygen-therapy.aspx

– and it convinced me to try oxygen – not at the rate in the study, as I wouldn’t be able to afford it and it would have required giving up other therapies I regard as essential. I found out that there was a local MS Centre offering Oxygen treatment  [check here for yourself http://www.msntc.org.uk/ ] and that they offered a free trial – I was VERY worried about being locked in under pressure for 90 minutes, as agoraphobia is no fun for me, or if I lost it, my cellmates 😉 The trial went well, and although I have had one blip [I’m also allergic to Vicks VaporRub and Olbas oil but forget to warn people in the summer] I managed to attend fortnightly for a couple of months and then took a break and now go weekly. I get lifts [thanks Onni!] which saves me £10+ each way, phew! I find it hard to be in the chamber that long [agoraphobia] and in a chair/upright that long [backache] and the noise of the masks/oxygen and the pressurization sets off my tinnitus and I get more nightmares [PTSD releases as the neural pathways re-open, I guess?]  however, despite all that, it is STILL worth it because although I come back and sleep a few hours, when I wake up I am more mobile and my sleep pattern tends to be better for a few days [except for nightmares] and my strength/ stamina is much better. My fibro fog has diminished and I can write a long blogpost again 😉 I can think through an art project or design a garment without feeling exhausted. I still get very tired if I then have to communicate that to someone else, but I was getting tired talking to myself :O I can manage more in one day again and I have surprised Eleanor a few times this summer popping in to Knit Nottingham – look no wheels!! though I then sink gratefully into a chair 😀 I manage my time in the chamber very carefully and warn people I am a fidget as other people can of course be tense too. I took knitting at first, but it is very hard to see through my glasses wearing the mask [think big fighter pilot style, not dainty hospital] so I have to take them off. Sewing patchwork turns out to be perfect, I can finish a rosette [7 hexagons] and maybe start another and if the music is good and I know a majority of the other divers [there are 7 seats and 2 wheelchair spaces, all in the size of a big lift!] then I will even be quite relaxed at some points. I know people who can’t do it because each individual symptom is too bad for them, Keith got very bad leg cramps from sitting upright that long, he’s quite tall too, so holding his legs in was hard too.. so it may not suit you, but it is something the doctors won’t mention that could help, and a free trial will give you some idea. Our MS Oxygen Centre also has a monthly ME/Fibro support group meeting and a gym and other professionals you can book in with for tailored Physio and Reflexology, each Centre is slightly different, so worth checking out. I’ve met some lovely people there too, and if you are considering a special diet, you will get support as most people with MS or cancer are on one or another, leading to some very interesting chats 🙂

THERAPY/ COUNSELLING it is really invaluable to have a place you can vent how crap this is. Choose your therapist carefully if you are paying! If you have been assigned one, the CBT [cognitive behaviour therapists] peeps are great for strategies, rubbish on feeling your feelings when it is about chronic situations. They CAN help with how to tell Auntie Maud to F*ck off without swearing though 😉 a pain relief support person may offer a mixture of CBT and listening and a Person-Centred or Client-Centred/Rogerian therapist will work with you, where you are, no judgement. You can even ask for no feedback with some, though to be honest, hearing someone agree how bloody hard it is really helps with backbone when it comes to facing up to energy vampires. I again am very lucky, I have had some very crap therapists and some very good ones. My current therapist really gets it, because she has been there. EMPATHY NOT SYMPATHY. People mean well but this is not like that time they had flu, not even like when they had glandular fever… it’s worse, it’s affecting every area of your life. You deserve the best you can afford, though training up a student can work well, they are often very interested and will read around the issues rather than thinking they know how to handle your life.. sigh…Above all, if you don’t like your therapist or feel uncomfortable/ silenced in any way, stop. Find a new one. They may try to persuade you, at your expense, to work through the difficulty. No. Life is too short and your energy is too precious to waste teaching people who should know better. If they offer a free session, well, it could be worth it, they are showing good will and respect, so there is something to build on.

Personal Assistants/ Professional Carers are also people to only work with if you feel comfortable, if you have any choice whatsoever. I have 2 wonderful helps, both of whom have taken a certain amount of training and me learning to accomodate them – Penny doesn’t do heights, cobwebs are manageable with a cornice brush, lightbulbs, ask someone else 😀  Cherise, well, onions make her cry for ages!! However, they both have hearts of gold, respect I am an artist and have different priorities and honour those. One previous help wanted me to use fake Cath Kidston tins for everything in the kitchen – how about NO!! I pay them £10/hour and I feel £35 per week is well spent for having food prepared or brought in, a lovely clean flat, shopping from a half dozen places cheaper than supermarkets and taxis to get there and the SPOONS… the sheer energy it takes to go to more than one place without a sit down for an hour somewhere in the middle, even a cafe is too noisy/demanding to recover energy in, unless it is very quiet..

MEDICATIONS – this is probably what you were expecting for remedies 😉 I take Citalopram [keeping my anxiety disorder low definitely helps manage pain] Gabapentin 900mg daily works well for me, this varies enormously among fibro-peeps, including people unable to tolerate it all and Dihydrocodeine up to 180mg daily, depending on how the chiropractic cycle is helping me. I still get pain that makes me cry, sometimes the sharp pain in my leg takes me completely by surprise and would knock me over if I didn’t have the stick and/or rollator. It gets worse if I sit upright or use my sewing machine a lot, so I do things like swap leg for the foot pedal and lie down every 20 minutes, frustrating when I’m enjoying myself, but yelping with pain is no fun either..

WALKING AIDS – since I started Oxygen Therapy I can sometimes manage with only a stick – indeed I impressed the manager with my turn of speed so much on Monday she asked if I really need it 🙂 unfortunately yes, I’m great first thing and for a few yards, toiling round a big shop though..not so much! Mostly I use a rollator with a seat, I’m now on my second [thanks Vron!!] as the brakes on my first one keep going. A rollator is great because you are still walking, but ergonomically it uses less energy as the wheels give you some momentum, and confidence-wise it’s unbeatable, because the minute you need to sit down you can, and the cushion and back support mean I can manage even a picnic in the park with friends for over an hour 🙂 I’m very bad for loading the basket up on my way to the bus stop though, so end up too tired on the bus home. Pacing can always be improved! I regard taxis as a walking aid too, often taking a cab for the first leg of the day to save myself energy until I have ‘warmed up’.

Special Diets – well, everyone is very different in this area, I tried Fit for Life years ago and it did help enormously with candida symptoms, migraines and IBS, so I have some recipes left over from that and general principles – use olive oil and live yoghurt regularly, if possible, daily. However, a day without caffeine simply doesn’t happen for me, and if I don’t stay awake enough to eat and take meds then I end up in agony at night… so personally, I have one or two cups of caffeinated coffee a day to ensure some energy, however borrowed, and then I make up big bottles of squash to make sure I get the 6 pints to 5 litres the chiropractor recommends. The water in my flat tastes disgusting so lemon squash it is, NAS, which a lot of people can’t have, homemade would be better, but I can’t cut a lemon in half, grrr. I’m a vegetarian and I feel very sad if I don’t have what I call vegetable platter and my husband called ‘veg and more veg’ [he was veggie too, but in that chili/curry/ spiced mush way] every few days… broccoli, yum!! I am supposed to avoid Savoy cabbage, and hate aubergines and sprouts, but baked potato and salad or steamed veg make me happy, veg risotto, stirfry and noodles, as long as I am getting enough veg I know my bowels will be happy – and when you take as many painkillers as I do, that is very important – and enough cheese and eggs to keep my D-lyscine levels happy, then most stuff will tick along ok. I eat bread and chocolate and lots of other things people say to give up, but personally, when I have, it has not made any appreciable difference. Others find differently, so it is important to experiment and find out what works for you and to learn to shrug off others’ enthusiastic fervour for their new wonder diet… I tend to say over and over again, ‘I’m so pleased that’s working for you’, because I am, though I  can normally tell within 2 sentences it wouldn’t work for me, but I’m 52 on Saturday and have tried lots of alternatives… and nothing works on a ‘born again’ seeking converts except living longer 😉 But honour the individual unless they are on your last nerve in which case chew them out, they need to learn the signs of a woman on the edge {anyone remember Whoopi Goldberg in Jumping Jack Flash?! teehee} For repeat offenders you HAVE to put up with, then interrupt with ‘Oh I have to tell you about coffee enemas!’ etc etc.

At the end of the day, it is always about finding what works for you, and honouring your own priorities, maintaining the activities that remind you who you are, modifying them to your illness, but trying to keep the taste alive, to feed your sense of self.

Think Again: Being Human 2016

An exciting opportunity came my way and luckily I had the spoons to respond! [Viva Oxygen Therapy!!] Have you heard of Theodore Zeldin? He’s a very special person 🙂

sorry this is such a rubbish photo, but it was taken by candlelight 😀 that’s a commissioned cowl in his hand, made by Singing Bird Artist 😉 oh my, what an honour. You can find lots about Theodore Zeldin online, his short biography is here:

http://www.oxfordmuse.com/?q=theodore-zeldin

and his books are available from all good bookstores, as they say. Personally I think he has contributed so much to intersectional thinking by extending the way ‘respectable’ history researchers and professors can expand into political zones and make the voices of ‘ordinary’ people shine through. That he then champions a method of peace-making through conversation, an unfolding of understanding by breaking down stereotypes and having people respond not react to the person in front of them, perhaps from a group they had biased thoughts about, oh, this is Nobel Peace Prize stuff in my book…

He is here in Nottingham both to launch the Being Human Festival 2016 [many other venues across Britain, see http://beinghumanfestival.org/event/conversation-dinner/ for the event where the photo was taken, many events also took place at Contemporary, where some Black History events took pride of place ❤ ] and the Nottingham Portraits project, where a city will be revealed by the views of its citizens, many more events planned for that!

So, what was Singing Bird doing there? Well, you know I’m a textile and fibre artist and work as a process artist, incorporating time and site specific details… Amber Forrest contacted me through Knit Nottingham, who suggested me as a knitter, who though disabled, would be very comfortable knitting during an event to commemorate it in some way. Thanks Eleanor, I owe you 😉 After an excited phone conversation and meet up with the lovely Amber who did so much [thanks again Amber] to make sure I was comfortable and my agoraphobia and fibromyalgic needs were met on the night, I was primed. Knit a hat, no a cowl, for a man who has pioneered such exciting techniques to open people’s minds and show them more is possible! This is my joy in action 🙂

This is a man who wears suits a lot – that’s what professionally active historians of 80+ wear, but I noticed in photos often has his shirt collar open, no hat and no tie. Aha! A cowl might be useful then, particularly when travelling. Amber had found the yarn above, a navy with white thread running through, which turns out to be recycled glass fibres, and get this, it glows in the dark!! How cool is that! I immediately felt how like a pin stripe it looked, like those suits… and having thought about how he has worked to bring out hidden sides of people, I thought of natural colours, a rainbow maybe, no, better, a sunset, with colours reflected in the sea, all the ripples he has made in the world, shimmering reflections taken on their own wave out into the world and the waves he has met and with which he has rolled, how much further he goes than you’d expect from the pinstripe… So I prepared for the event by knitting the ‘pinstripe’ side and starting the sea and sunset, with short lengths of yarns prepped to allow many elements, reflecting the diverse and various people expected to the event at Jamie Oliver’s Italian restaurant.

I arrived at the event and was seated with some help [bar stools and sticks don’t go!] introduced to some lovely people, then escorted upstairs [plenty of disabled people came to the event, but they all had to be ambulatory, and those stairs with cold brass handrails were no fun to come down]  to be able to choose where I wanted to sit. I smiled, remembering my late husband, as I chose the back corner where you could see 4 doors, but hide a weapon at my right side – yes, classic ninja/agoraphobic out but stressed!! He always knew where I would sit, and as a martial artist found it very funny, because I’m also a pacifist. 😉

There were speeches, from the head of Humanities at the University of Nottingham, about the Being Human Festivals and their intentions [improving community integration and access] and from Amber introducing the Nottingham Portraits and MUSE project, and Theodore Zeldin then spoke on how to use the Menu of Conversation we were offered to guide the process. He advised how to avoid traumatic topics if you needed to, but still speak of things important to your life.. it was an amazing list and very interesting… only one thing jarred.. the use of “both sexes”. Theodore has written some great stuff on improving communication between men and women and works with his wife [they have joint copyright on some ideas/processes] so understands the huge need there is for this work.

However, it is 2016, and we do now know there are far more sexes/gender orientations present in our communities, I have several trans friends, some happily transitioned, some at the beginning of their process, but most of my closest trans friends are non-binary, and I have 2 cis friends who also feel they identify more with genderfluid orientations. What is commonplace to me doesn’t seem to have reached Theodore, but I hope someone will draw his intention to this lapse in language, because I don’t feel any lack of diversity in his approach… I will include it in feedback to the Menu process forms and if I am part of the spinoff events MUSE intends, I will definitely raise it, and suggest sticking an amendment over the top. [I am torn between eco awareness and trans ally on that, far better to have new forms, but how many have been printed already??]

 

Overall I was very pleased to see a diversity of people there in terms of race and culture and disability, I met at least 2 gay men, spotted some lesbians and doubt I was the only bi person there… there were a lot of white academic types, but then they were there as helpers, so like the wait staff created another group making it slightly hard to get a sense of true proportions. One University guy made a gaffe, but it turned out well, as he casually said he had been hoping to meet some homeless people – silence from 4 of us, and then a refuge project guy spoke up about varieties of homelessness and to support him I said, hmm, yes, I had been 20 minutes away from having no key to a place of my own, flat sitting for a friend while unsafe at my own place [house sharer was letting in violent neighbour angry I had helped her partner leave… sigh] was this close enough to give him an idea? Lovely project guy immediately says ‘Twinnies!’ and goes for a fistbump and handshake! The other two joined in and it turned out we had all been in precarious positions, the woman next to me making that very good point about how many paycheques most people are away from the street if they lose their home. The Uni guy looked a bit embarrassed but got over it and joined in and heard about the project in Beeston. Sorry I didn’t get people’s  names, but knitting takes two hands, actually it takes three when you get your work out and find you have lost a long needle in the taxi!!! I spent a flustered time figuring out how to knit in smaller sections at a time with many dropped stitches being sorted by candlelight [omg] as every other row took all 3 of the short needles from my mitts project… and then some… and BREATHE!!

My main conversation partner of the evening was a joy to meet! She was full of anger and righteous indignation and an edge of despair about Trump and Brexit and we talked non-stop!! I told her I am a possibilitarian and relentless optimist [at least when I have the right painkillers!!] and how I felt the working class had been abandoned when the first Council houses were sold off, and then when things like the Trade Unions, which had begun to diversify, black leaders in the TGWU [Transport General Workers] and women getting senior positions in the FireFighter’s Union, were pushed out of the Labour Party and the spin doctors let in, and the training and development side of the unions and the Labour Party stopped. I was never a Labour Party member, but I knew loads of Labour and various flavour Communists from being a socialist feminist with the National Assembly of Women… well I was the token anarcha-feminist 😀 [some of the working class women were very doubtful when I joined, but were won over by my ability to make profits on the catering to fund speakers for International Women’s Day] These were mainly women who had become politicized by the Miner’s Strike, strikes over working conditions, by meeting or being refugees and feminists in teaching or Council work. It makes for a different energy, less despair, more backbone when the shit hit the fan, and because this ISN’T the pit collapsing on 200 men in your village/town, a relief it isn’t worse. Although it is very very frightening…

The rise of the alt-right/ white supremacists seems to have started with Brexit, risen with Trump and if Marine Le Pen gets in in France… ffs… the recent event in Spain with Franco praised and the Nazi salute being offered to a Catholic priest – omg, omg… this is very, very frightening. Or is it? This was here before, but underground.. now it has surfaced and like a particularly bulging spot, it can be tackled and all that pus can run away. Before, Britain First and other despicables could deny their Nazi roots, now they are gloating, out and proud. And they are sickening the middle way-ers who very naively thought they could vote Ukip and it would only be black suits, not blood on the streets… if the second referendum comes through, I think enough lies have been proved, enough nastiness has been shown that with more canvassing and talking to lost-in-the-muddle types, we could get a very different result.

There is a pause in which we have time to organize against white supremacism, already Muslims and Jews have acted to make a joint organization to defend religious rights, which is amazing.. I have seen Jewish Voices for Peace making common cause with Black Muslims via Facebook through supporting Black Lives Matter demos over the summer and a couple of days after Trump’s election, this amazing announcement of the new organization. I had tears of joy… may this feed back, may this help those American Jews who do support the sending of military aid to Israel stop and instead build a programme of mutual understanding and send peacemaking volunteers to Israel/Palestine…

 

But back to the event, celebrating thinking again, meeting and talking and responding, not reacting… there was such a buzz, such good energy in the room… I woke up the next day early and full of positivity, and managed to start clutterclearing my studio! That’s a win! I am meeting Amaya for a cuppa at the weekend and we will talk more about the ideas thrown up, she has great energy, skills and education and empowerment and I hope we will be able to come up with some ideas to help gather the resources of our individual networks and enrol them in creating more connections…at the least, hanging out with likeminded friends is good for your mental health! more win, more hope, more possibility webs spreading into the world! It has to be good.