Being Positive? Stuff it! 

I’ve been thinking about language and the power of words. Mostly about the words positive & negative which crop up lots on chronic health forums. And you know what? I really dislike them. It’s the conversational equivalent of black and white, and the world just isn’t like that. 

They also imply that we choose to be positive or negative, and that just by saying “today I will be” some magic happens and we become one or other. Simply not true, if only it was that easy. 

I honestly don’t believe people are one or the other, I think we’re often both with varied shades of grey in between. And that’s fine. It’s perfectly normal to feel sad because the budgie died but happy because it’s not raining. Life does that. It’s how we cope with these moments and move on from them that define us. 

Trying to be positive is a route to failure. In the same way that trying to be negative is. Because they both focus on ‘trying’, and that’s not authentic. Either is also incredibly draining, both for ourselves and those around us. Spend half an hour with someone who constantly complains about the raw deal life has dealt them and you’ll come away drained. Spend the same amount of time with someone who is forcing themselves to be positive and look on the bright side and it’s just as draining. 

This is because they’re counting on your responses to feed their energy. Unknowing of what they’re doing they slowly bleed you dry. 

Answer? Stop ‘trying’ and just be. Stop, take a look around you, the world is a beautiful place, full of wonder. If you’ve forgotten how spend half an hour with a young child, they’ll show you the magic of sunshine and trees and dogs and laughter. 

And among these shades of grey is where you find happy. Where you’re in pain and can’t move but the cat comes for a cuddle. When your energy is so low you can’t get dressed so your friend comes to you for a coffee instead. Sunsets, birdsong, a light breeze, blooming flowers, scented candles, decent music, great coffee. All things we can notice and enjoy every single day. 

So put aside the whole +/- mindset, it’s fake and unhelpful. If you’ve ever had someone cheerily say to you “remember to stay positive” you know just how unhelpful. Instead allow yourself to feel happy whenever you can instead. Right now I’m in bloody agony, my fibro is flaring and even my skin hurts. But I can still be happy, I have TV to distract me, a comfy sofa and a snuggly blanket. And one of the cats is snoring bless her! 

On balance life is good. Don’t waste it reaching for how society thinks you should be, don’t let your illness live it for you, and make sure you constantly look for the small stuff, see the magic! 

My 15 favourite links! 

I’m approaching three years into my RA journey, in fact it was around August 2014 that I started feeling ‘not quite right’, just a general unspecific feeling of malaise. The swelling and pain waited until November to join the party! 

My way of coping with anything life has thrown at me is to research the hell out of it, as a high level manager for some years I was very used to problem solving, tackling challenges, call it what you will. Strip down your issue to the core, look at its impact, find a workable solution then plan implementation. Logic & reason. 

Obviously this approach alone doesn’t work for RA or any other chronic illness, but I still find myself fascinated by researching the medical, psychological & scientific aspects of RA. Part genuine interest, partly to confirm I’m not alone. 

This is where I both thank & curse the tool that is Dr Google. It’s fabulous that so much information is at my fingertips. It’s a nightmare that so much information is at my fingertips! We all learn for ourselves that using Google can be a bad thing, you start out with a hangnail and end up with gangrene in three clicks… 😉

So I have gradually whittled out the sites that are useless, badly sourced, unreliable, trying to sell me snake oil or just plain illiterate. Conversely I have found a staple core of websites that I return to again & again, as I know they are trustworthy, reliable and present information in a clear, understandable way. 

I’ll state now for the record these are just sites I’ve personally found very useful, I’m not being bribed to mention any particular site, and none of these are alternatives to consulting a medical professional. Phewww! They are also in no particular order. 

  1. NRAS are a British charity dedicated to providing information and support for everyone, from patients to medical professionals 
  2. Arthritis Research UK  are a another British charity who invest in research and providing information for all 
  3. NHS the British National Health Service website covers all things health related, from disease to diet, providing clear and reliable advice 
  4. WebMD offers credible and in-depth medical news, features, reference material, and online community programs 
  5. NIH the National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency
  6. EULAR the European League Against Rheumatoid Arthritis is a non profit organ that fosters excellence in education and research in the field of rheumatology
  7. Rheumatoid Arthritis. Net empowers patients and caregivers to take control of RA by providing a platform to learn, educate and connect with peers and healthcare professionals 
  8. RA Warrior Kelly first created her site/blog  in 2009. She believes you are the superhero you need to fight your disease, and provides a wealth of information that’s easy to understand in her blogs 
  9. Mayo Clinic more than 3,300 physicians, scientists and researchers from Mayo Clinic share their expertise to empower you on their incredibly reliable website 
  10. Drugs.com another very reliable site that offers patients clear information about medicines, pros, cons and tips for patients. (My only caveat is don’t use this site or any other over and above your doctors advice – doctors are trained to factor in risks of interactions and side effects, you aren’t)
  11. Creaky Joints is a wonderful online patient community. More than 100,000 people with all forms of arthritis and their families have been touched by CreakyJoints with meaningful support, updates and education, innovative advocacy and global research projects, and the sharing of great patient blogs from around the world 
  12. Health Central is a kind of health magazine online! It provides easily searchable information and articles about many health issues, shares blogs and invites questions for its experts
  13. RA – Facebook Groups –  I’m not going to provide a link here or name one group because where you find your tribe is personal. I originally searched for and joined a number of groups, and have gradually whittled that down to a few I use all the time. They’ve become family. Some groups will feel right and some won’t, and your right will differ from mine. Join a few, sit back and watch the posts, you’ll soon find where you feel comfortable. 
  14. The Seated View blog by Lene Anderson – my personal RA hero!! No exaggeration. If you only ever buy one book on Rheumatoid Arthritis buy hers, “Your Life with Rheumatoid Arthritis“, it’s my bible. My copy is dog eared and full of notes, and much loved. It even convinced me I was sane on days the world said otherwise. I’ve been fortunate enough to get to get to know Lene as an online friend, she’s brave, witty, clever and frankly amazing, total respect! Plus she likes cats 😊
  15. Giggles Over Tears with RA is a simply wonderful Facebook page. Donna’s sole aim is to use her poems about RA to make people laugh, a must follow! 

Playing the RA treatment game.. 

Hi all, I’ve just realised it’s been over a month since I’ve posted, mostly due to the extreme fatigue caused by pneumonia. Oh the joy! Hoping the double dose of antibiotics has done the trick, though I read it can take months to recover 😮

Anyways, I wanted to talk about my RA.. I’ve been pretty lucky the past couple of months, apart from “remaining pain” it had been mostly dormant. But let me step back to February which was my last appointment with my rheumy. When she decided unilaterally to stop treatment. 

Her rationale was that she couldn’t see any active inflammation so therefore my joint pain must be from Fibromyalgia. I’d been on Humira (my fifth RA med)  for six months with no improvement in symptoms, and (I quote) ‘Humira works for 80% of people so it can’t be your RA, and there’s no point keeping you on very strong meds you don’t need’. There are actually so many flaws in this argument it’s ridiculous. 

🔵 Firstly her numbers are incorrect. A quick search of the Internet will tell you that:

In one study conducted in 544 patients who had failed previous DMARDs, rates of ACR20 response for Humira 40 mg every other week and weekly at 6 months were 46% and 53%, respectively, compared with 19% for placebo” Figures from RheumatoidArthritis.Net 

🔵 Secondly I know my math is rusty but even if the 80% was  actually correct, that still leaves 20% of patients who it does nothing for. Crazy I know but what if I was one of those!! 

🔵 Thirdly I’ve had RA and Fibromyalgia for over two and a half years. I know the difference. RA joint pain is unique, the closest I can come to describing it is to imagine you can see your joint, with the synovial fluid sitting there protecting it nicely. Then imagine someone replacing that synovial fluid with acid. Burning acid. Fibromyalgia doesn’t get anywhere near that specific or that painful. 

🔵 Fourthly (that sounds wrong) RA is a systemic chronic condition. Not everyone has visible swelling. And what about the stuff going on you can’t see? The 50% increase in the risk of heart disease, the ongoing damage to internal organs, tendons, eyes, increased risk of infection, narrowing of blood vessels…. 

If rheumatoid arthritis is left untreated in the long-term, it’s not an exaggeration to say that your life could be at risk as well. “Persistent inflammation can lead to a shorter lifespan,” Pisetsky says” in a medical article from EverydayHealth 

I digress a little, but I think the risks are kinda important. At my last count there are approximately thirteen different biological medications approved for treatment of RA in the US, though here in the UK we are behind with approving new treatments, which I suspect is down to cost. There are also different types of biologics that act on specific areas of the immune system, so if a TNF inhibitor like Humira  doesn’t work perhaps a T-cell inhibitor like Orencia might. Lots of possibilities there huh?! 

But – having already dismissed one rheumy and knowing there isn’t  an endless supply of them locally I talked it over with my GP and decided to “play the game”. Because that’s exactly what it feels like, that I (the patient) am having to humour my consultant in the short term to stay on her good side so I can get the meds I need long term. So I sat back and waited. As I said my RA had been behaving for the most part and I’m kinda used to the pain so I let it be. 

Week before last my fingers started swelling again (as I’m sure many of you know there is an RA rule that they will never do this on the day of an appointment!), and then last night my Carpals started up. These are the cluster of small bones on the back of your hand just before your wrist. Today I can hardly move my left hand. It sounds insane but this is exactly what I’ve been waiting for. 

So today I’ve put in a call to our rheumy advice line which will get me a call back from the nurse within 48 hours. I’m also going to get bloods done ASAP and I’m hoping my CRP and ESR will be raised – compiling evidence! 

So I guess it you could say that in the RA treatment game I’m currently a point behind but focusing on the next match. 

Love & blessings 💙

Simplifying Part Two – Vacations 

I’ve always loved to travel, even the word conjures up a wonderful jumble of images in my mind, from fictional journeys I’ve taken such as old fashioned steamer trunks and the ‘Grand Tour’ of Europe (Little Women*), bustling Caravasarai for travellers along the Old Silk Road through Syria, Persia and onwards (see Physician*), as well as times I’ve spent abroad over the years, the scent of the spice markets of Marrakech, the taste of fresh cherries in southern France, the beautiful work of artisans in Cuba, the timeless flavours of mezze in Cyprus, the Fairytale castles and landscapes of Bavaria, the majestic beauty of mountains in Austria, the cobbled streets and squares of Belgium with the obligatory Moules Frites! 

As you may have gathered for me travel is not about finding a good beach, but wandering local streets, finding tiny coffee houses populated by ancient men who seem part of the furniture, stumbling across cosy restaurants with food you remember years later, churches and mosques and town halls with amazing architecture, bustling souks with women in brightly dressed kaftans and djellaba haggling, always haggling. 

Nowadays all of that sounds quite exhausting! So how on earth do those of us with chronic illness and disability and fatigue even contemplate travelling? For me (yes, here’s the theme) it’s about simplifying. And to simplify you need to plan a little. Yes, this may take away a smidge of the spontaneity of previous journeys, but they were taken in days when I didn’t need to know where the nearest toilet was at all times and whether I could park within 20 feet of my destination! 

So, how to simplify travelling? By reducing both physical exertion and stress. I’m going to talk about holiday type travel here, but I’m sure some of these tips could apply to other journeys too. 

  • Simplify the airport. My number one tip is book assistance at the airport. It’s free and it’s the best thing ever, especially if like me you travel alone. Once you get yourself to the meeting point in the airport you can almost stop thinking. You get comfy in a wheelchair and often sail past queues at passport control and check in. I can already hear some of you saying hang on, a wheelchair?! Yes. Gatwick airport – 1.2 miles to North terminal from check in. JFK 0.7 miles. Zurich 1.27 miles. I can’t walk that far, and you really do not want to arrive at your destination in an exhausted and painful heap. Use the wheelchair. Of course if you have your own wheelchair or even mobility scooter the airline will carry these free of charge, just make sure you let them know in advance. 
  • Simplify your meds – yes, it’s a fact of chronic life that like me you’ll probably need a bag just for your meds. If you pack it carefully you’ll have no problem at security. Don’t decant into pill sorters, take them empty and do it when you arrive. Ensure every med has its box or bottle with pharmacy labels, and carry copies of prescriptions or a print out of your repeats list as back up. I’ve had my meds emptied out at security more than once, but I’ve never had them queried. If you’re carrying sharps let the airline know in advance, you may need a letter from your GP. NB – always carry on, never put meds in the hold, we’ve all heard tales of missing luggage…. 
  • Simplify your packing. It’s taken me a while to master this, but actually taking as little as possible is so freeing! Because of my fibro I tend to stick to soft jersey or linen, and I swear to you three pairs of trousers, five tops, a jacket or cardi and a scarf or two and I’m done. One of those tops will be one I can dress up a little if I do end up having an evening out (I’m usually on the bed watching TV by evening these days!). I spent years lugging clothes abroad that came back unworn, and I know I’m not alone. 
  • Simplify your accommodation! How? Check access to your room, and access to what makes your holiday enjoyable before you book. Once you know your booking is for a ground floor room, within 40 metres of the town square/beach and there are four good restaurants/bars nearby you can relax about your arrival & enjoy your stay. 
  • Simplify your decision! What are you really travelling for? Forget everyone else for a minute, what do YOU want out of this holiday? Whether it’s time to meditate daily, swim, lay on the beach every day or learn to paint make that the focus of your booking. If you have children book a holiday with a kids club or crèche facilities, if they spend half a day there while you swim/read in peace it means you have the downtime you need to save spoons for time with them in the afternoon, or vice versa. Remember this is your holiday too. 
  • Simplify your expectations. Probably the hardest lesson I’ve learned but the most important. Be kind to yourself. It’s OK not to see every tourist attraction in the area. It’s OK to have a siesta in the afternoon. It’s OK to have early nights. It’s OK to just sit and have a glass of wine while you watch the sunset. It’s OK to spend a whole morning drinking coffee and reading a good book. It’s even OK to spend a day in bed. (What!! But I’m on holiday, stuff to do, places to see! A day in bed when I’ve paid to be here?!!) Yes, it’s absolutely OK. Think about it. You’re on holiday, a vacation, a rest. If you can’t give yourself permission for a day in bed if you need it when can you? Doing this while I’ve been away in the past couple of years has been essential, I couldn’t have had the up days I enjoyed without listening to my body and taking a day or two to rest. 

I would love to hear any tips you have for simplifying your travel plans. 

The two books mentioned are both ones I’d recommend. A relaxing holiday read maybe?  

*Little Women by Louisa May Alcott 

*Physician by Noah Gordon 

Simplifying Part One – Living Space 

I’ve not done this before, but I’ve just come up with an idea for a few linked posts around the theme of Simplifying. It’s a term we hear a lot, especially in chronic life, of course simplifying makes things easier! Sounds obvious but is it? 

So what exactly do we mean by simplify – common synonyms include to make easy, make plainer, remove the complexity from, or make more accessible. Whilst the latter here would appear at first glance to apply to ‘us’, because accessibility is often at the forefront of our minds, the rest are certainly appealing to me too, who doesn’t want things easier or less complex?! 

So we agree simplifying stuff is good. Where do we start? The first one I’m writing about here is in the home, our living space. Whether it’s a palace, a bedsit or my own little bungalow there are definitely things we can do to make our daily lives easier.

And immediately one of the biggest challenges for a lot of people raises it’s head – where to start! When you have a houseful of things that you may have had for one year, five years or even thirty years, it’s very difficult to at least partially detach emotion from belongings so you can make sensible decluttering decisions with a clear head. But it’s really important that you do. Stuff is just that, stuff. Good memories live on in our minds and our hearts. 

Often this is where you can enlist help from a practical friend or family member, they may help you keep a clearer head. Keeping a pearl ring because it was grandma’s is a lovely momento. Keeping an odd sock she knitted in 1963, or a chair she sat in once, not so much. 

I’ll admit I find this easy, as I’ve never been very attached to things, I believe it was because my lovely mum was a…. collector 😊 so I’ve just gone the opposite way. I always remember the mild but tangible panic in our house the day before family visited, piles of stuff (from magazines to ironing) that had mysteriously grown were hidden upstairs or squeezed into cupboards before actual cleaning could commence. Don’t get me wrong, it was never dirty, it was just always cosy and cluttered.

I’ve spent a number of my adult years married, so it’s only really in the last five years I’ve truly discovered my own decorating style, and whilst not stark it is a little minimal. I’ve had friends comment how tidy I am. I’m truly not, I just don’t like clutter so I put things away. They have a place, and that generally means I can find them!

But yes, even I had a challenge downsizing from a three bed bungalow to a small one bed bungalow eighteen months ago.  And I’ve cleared out again since, because I still brought too much with me. With every room I’ve had a rule, if it’s not truly beautiful (to me) or useful it goes! Using a combination of local selling sites have netted me money for a lot of bits and pieces, and charity shops have benefitted too. I just sold a mirror today for £20 😊

So how do you simplify YOUR living space? My top tips

  • Pick a room. Never attempt more than one room at a time, you’ll get disheartened and give up. Once you’ve chosen a room split it mentally into sections. So if you’re doing the bedroom for example, break that down into the chest of drawers, the bedside cabinets,  the dressing table and the wardrobes. This way when you start running low on spoons you’re never in the middle of a big clear out, so it’s manageable to finish one task at a time. 
  • Wherever you’re cleaning grab three bags, crates, boxes, whatever is suitable. Then label these (mentally is fine!) Sell, Donate, Trash. Anything you’re keeping simply stays in the drawers/wardrobe etc – easier to sort it when you’ve got more space. One rule here – items can swap boxes but they can’t come back out, be strict with yourself! 
  • Stay organised. If you get help to stash boxes in, say the garage, until you’re finished make sure the donate/sell piles are separate, and the trash goes directly in the trash bin. 
  • Be as unemotional as possible, and as ruthless as you can stand. If you’re finding it hard, think of the money you could raise, the good you’ll be donating, and how lovely it will be to have your nicer things accessible, clean and tidy!

If you’re still feeling up to it, once you’ve cleared a room and before you start the next give a once over with a critical eye. Does the layout work easily for you? Can you move or lose a cabinet or table now you’ve cleared it to give you more space? Will that chair be nicer by the window? Trust me, this is addictive, I promise once you’ve done one room you’ll be itching to start the next!

Just remember, small manageable chunks, spread out your spoons. Keep reminding yourself you are simplifying, making things easier for YOU! 

So how am I doing? Good so far, slowly but surely, I even raised enough from selling last year to buy a new (second hand) sofa! I have just three spaces left to tackle. First is my bedroom, it’s almost finished, just the wardrobes to do now, which I keep putting off. I never said I was perfect! Next is my cloakroom cupboard. I know I have coats, shoes, boots etc I’ve not worn in over a year and they need to go. Last will be my ‘office’ cupboard in the hall which will be the easiest by far. Some of this simplication will definitely bring me a little money. Now I just need to dig up the energy!

Choosing to be happy… 

I was reading an interesting thread on twitter this morning and it emphasised something I’ve noticed online over the last few weeks. First I’ll give an example – this particular thread had asked the question of disabled people “With optimal support how different would your life be?” 

The answers fell into two distinct categories, either “I’d write/study/move house/volunteer” or “I can’t imagine this / I don’t have the energy to think about this”. Now you could say perhaps some of the responders were more physically impaired by their disability, or that they deal with more debilitating symptoms. But having been noticing this for a while now I don’t believe this to be the case.

We can all choose how we think about something. And making that conscious choice has a huge effect on how we subsequently feel. Bear with me here – if you’d have told me this a few short years ago I’d probably have become defensive or angry and felt you were criticising my thought process. It’s only due to some great therapy and a lot of reading that I’ve been able to reach a point in my life where I’m thankfully  able to make conscious decisions about what I think. 

The impact this has had on me has been so positive. Don’t get me wrong, it’s not a cure for my depression and anxiety, I’m still taking my pills and have days where it’s darker. What it has done is given me coping techniques to deal with those days without them turning into months every time. 

In simple terms only WE are responsible for what we think. Yes, that inner voice is us too. It’s our head, our thoughts, our responsibility! And we make subconscious choices about what we think, how we react to things, how we will respond. So why not make those choices concious? 

Let’s use my Saturday as an example. I woke around 11am, did the usual coffee/bathroom/clothing stuff then went to meet some friends in my local for coffee. I was there for about three hours, sitting down, chatting, crosswording and laughing. Then I went home and crawled into bed, took a double shot of painkillers and didn’t move again for six hours. This is fairly standard. Activity = pain + fatigue. 

I could quite justifiably feel angry about this. It’s not fair, other people don’t have to pay for socialising, why can’t my meds work, why did I get this stupid disease, why am I so useless, I’m no good to anyone, my life is crap. 

It’s an easy trap to fall into, I know because I’ve been there. But it leads down a very rocky path to anger, self pity, self hatred, and a feeling of total worthlessness. We convince ourselves we have no value. And that’s a self limiting belief, because we withdraw and huddle at home feeling sorry for ourselves, which means we don’t see anyone, which means they all hate us  because we’re worthless. It’s a horrible lonely and despairing place to be. 

But…! We have the power to change these thoughts. One day at a time, one belief at a time. There’s no magic trick or quick fix, it takes practice, and dedication. Which to be honest are small prices to pay for feeling better about yourself, right? 

So Saturday night, laid up in bed. Was I angry, sad, feeling sorry for myself? Nope, not even close. Was I slightly peeved about the pain? You bet, but that’s as far as it went. 

  • Rather than being angry I could only stay out for a few hours and then had to suffer I was grateful for the lovely afternoon I’d had catching up with friends 
  • Rather than thinking my life is so awful I was thanking the universe for what I had – pain relief, a warm bed, heated blanket. 
  • Rather than thinking I was worthless for not spending more time with friends I acknowledged that they love me, and enjoy spending time with me. And I’m very grateful for that gift. 

I think the most impactful thing I’ve learned has been to practice self-love and gratitude. Both are simple concepts. Accepting yourself, and loving the unique person you are will be the most important thing you ever do for yourself. And practising gratitude daily is such an easy habit. 

Start by listing three things a day. They could be time with friends, a nice lunch, a sunny day. And some days they’ll be bed, sleep, food. But you’ll find you start appreciating the small stuff, and realising it’s really the important stuff. Ever thought about why small children are so delighted by every little thing, so quick to laugh, to smile?  They have no learned pattern of negative thoughts, they literally live in the moment. 

So next time you’re about to tell the world how dreadful your life is, stop for a moment and watch what you’re thinking. There’s probably a jumble of negative thoughts whirring round all reinforcing your poor opinion of your life. So acknowledge them, and then let them go. Take a minute to think of what’s good about today. Toast, pyjamas, slippers? Great, that’s a start. Aren’t you glad you have them? ☺️

Honestly, give it a try. It is possible to choose to find the joy in your life rather than focus on the pain, and the outcome is you’ll start feeling happier. That’s what I call a win. Namaste 🕉️💙