RA & Lung Disease, or my struggle for breath

Firstly my apologies for sneaking in a wildcard at the end of RA Blog Week, but I’ve been suffering badly with fatigue which is unfortunately not conducive to blogging!

It’s been a long year already, and it’s left me a little tired. Let me take you back almost 12 months….

October 1st last year I started coughing. An irritating dry cough that was constantly annoying. By the beginning of December my GP ordered a chest xray ‘just to cover all bases’ and prescribed a steroid inhaler to help with the cough, which we thought might be Bronchitis.

Around Xmas I started getting breathless on exertion, and over the next few weeks this got worse. My xray came back showing ‘some scarring’. I’ll cut a long story a little shorter here but over the next few months I had a number of attempts at spirometry tests which failed as I coughed too much, though they did indicate a restrictive breathing pattern. At this point I was referred into the hospital, and after more detailed HRCT scans, Fleuroscopy, a bout of pneumonia and extensive lung function tests it became apparent that the RA has attacked my lungs.

In the last meeting with my thoracic consultant I got to see the scans, including a short “video” of my lungs breathing. It’s fascinating to see, you know me and wanting the fine detail! What it’s also shown is that on top of the lung damage – which is very likely from the RA – my right hemidiagphram is significantly elevated, though still thankfully working. The diaphragm is essentially the muscle that moves your lungs when your brain says breathe.

I’m saying it looks like RA damage because the jury is still out, there’s still a small chance it could be pulmonary fibrosis and not interstitial lung disease – further tests will keep an eye on progression of the lung damage and help identify the cause.

But essentially parts of my lungs have become inflamed, and then hardened, reducing my lung capacity and making it harder to breathe. On top of that the raised hemidiagphram is squashing the bottom of my right lung which just increases the breathlessness. We don’t know why that’s elevated so investigation is needed there too.

There is no fix, no cure. Lung tissue can’t be repaired. At the moment my consultant doesn’t feel this will significantly shorten my life, but we all know life don’t come with guarantees. I’m not being negative here, just sharing the facts as they’ve been put to me.

Unfortunately whether I live another four years or forty, I will have to live with this constant breathlessness. It was particularly difficult the first few days here in Cyprus as my lungs struggled with the hot air, making breathing incredibly hard even on mild exertion. This has now eased somewhat, hopefully in part due to the new inhaler I’m on.

But daily life has become that much harder. What makes me breathless? Making a coffee. Having a shower. Getting dressed. Turning over in bed. Walking short distances on crutches. Cooking. Basically everything. I’m also increasingly tired, probably due to low oxygen saturation levels which are being monitored, but on top of ME/CFS this has been a big drain on my already limited energy. I’m slowly learning to take pacing activity to the nth degree, quite literally tiny baby steps.

There have been moments when this has been very scary, but I’ve come to realise it’s almost like starting over again with a new chronic illness. Except this time I’m better prepared. I don’t need to slog through the ups and downs of adjusting mentally because I’ve been there. I’m certainly not willing to allow – or even in a place where – this can knock me down.

So, both mentally and physically I take those baby steps forward. I still meditate regularly, practice mindfulness and gratitude daily and these help keep me sane (ish!). In all seriousness without these I’d have been floored by yet another chronic health issue, but living in the now definitely reduces stress reactions. I’ve had my moments believe me, but they’ve been mostly manageable.

I think it’s important to remember that as with my first diagnosis of RA, this isn’t an end but the start of a new, slightly tougher path. And with the support of some amazing friends and family I can learn to live with this too.

Please remember as always nothing on my page is intended as medical advice and any errors are my own!

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Acceptance is….

I was asked a question recently by a newly diagnosed young lady in her early twenties. She wanted to know how to find a way of living with RA – she was already in a lot of pain and her RA was quite severe which had her worried about her future. I was really touched that she felt able to ask me, and I was pondering what to say when it hit me – how blessed was I that RA didn’t raise its head until I was in my forties! I can’t even imagine how horrid it would have been to have found myself in these shoes at a younger age, when you’re still finding out who you are, what you think and where you want to be (Not saying I have those down now, but I worry about them much less!).

My initial thoughts were around Acceptance, as it’s been the key for me in finding a way to live alongside my illness. But how do you explain that to someone young and newly diagnosed? Someone who is upset, scared, angry and confused. “Just accept it, you’ll be fine” is not going to cut the mustard. So this is a much longer (and more edited) version of my reply to her, which I really hope might help not just the young and newly diagnosed but the older (!) ones amongst us finding chronic life the emotional as well as physical rollercoaster it often is. So, Acceptance.

Where to start? Meaning? Let’s give this some context. Chambers English says to accept in this sense is to tolerate, to take on board. Not exactly cheering words. I know people often see acceptance as giving in or giving up, and it’s certainly not that for me. Acceptance doesn’t mean stopping researching treatment options, chasing doctors or not eating healthily. Let me digress for a moment – often in chronic life Elisabeth Kubler-Ross’ seven stages of grief are referred to. Originally published in her book ‘On Death and Dying’ it was soon realised that it’s a really useful tool for understanding grief in any form, including grief for what and who we were after significant life changes. Diagnosis with a chronic condition certainly fits into that category. It helps us validate what we’re feeling as well as letting us know we’re not crazy, and we’re not alone.

The stages are usually described as Shock or Disbelief, Denial, Anger, Bargaining, Guilt, Depression and Acceptance. You can see a good explanation of those stages here, but I will just note that these are not linear, it’s common to jump back and forth between all of them, we process these in our own time. So whilst Acceptance is listed last, it doesn’t mean you have to cycle through the others first, although in all honesty it’s likely you will. It’s perfectly possible to go from depression to anger to bargaining and back to anger again, and it’s likely you’ll do it more than once. And that’s absolutely fine; there is no “right way” to grieve. Be kind to yourself, this is a lot to deal with.

It’s often a long road and I certainly didn’t get here overnight. Believe me I’ve ranted, railed, been depressed, had severe anxiety attacks, not wanted to go on, screamed why me – the whole box of tricks. I’m sure this shows in my earlier blogs! Acceptance is a tough thing to do with a chronic illness, but it’s such an important step, as it can bring us to a place of peace with our illness. Anger in particular is very wearing to carry daily, and hurts us emotionally.

You’ll need to find your own path to peace, no-one can do it for you. For me it’s been psychotherapy, leading to meditation and spirituality, alongside antidepressants and some great support from friends. For others it’s religion, counselling, psychology, support groups, medication, and sometimes just having a good scream! All of these are great tools. But I promise you too can make your peace with this.

Acceptance – to tolerate? So, eventually I’m back on track! Toleration suggests a kind of grudging version of putting up with, like your illness is an albatross around your neck. For me it’s much more profound and much simpler. Acceptance means non judgement. It means I stop attaching emotions to my illness. I accept it just is. Like a table or a chair, it exists, but I don’t have to feel anything about it. It’s not evil or bad or personal, and it’s not something I need to fight with or be angry at. Who has the energy for that?! Using mindfulness has made me much more aware of what I’m thinking, and if I find my thoughts are drifting towards anger or guilt I just return to my breath, and I remind myself they’re simply not helpful.

Acceptance takes work, it takes practice. It’s not easy, it means changing the way we think. Of course chronic illness has had a massive impact on my life, there are many things I’ve lost, so it’s important we choose where we focus. I’m fortunate; there are also so many things I’ve gained, including a fabulous support community across social media. I choose daily to focus on the good.

We all know things will change, chronic life throws us new symptoms and challenges frequently and I’ve found that if I try to accept and roll with these rather than fight them my life becomes calmer. Does it work every hour of every day? Nope, I still have anxiety triggers and a recent new diagnosis had me reeling for a few days. But previously that would have sent me down the rabbit hole for weeks if not months, so I call that a win.

Life is precious and there are no guarantees for anyone, so certainly for me the best thing to do is enjoy every moment. Really enjoy it. Even on the worst of days we have choices about what we focus on and how we think. So on my less easy days I’m really grateful that friends drop shopping off and I have a warm bed. On better days just sitting outside and feeling the sun on my face or the breeze on my skin reminds me I’m alive, and I make a conscious choice to be happy.

PEM – or Bed Now Please

Having just started to come out of a bad incidence of PEM I realised it’s something I’ve not specifically posted about. Yet it’s been a huge part of my life for over three years. So I’m going to try to explain in personal terms just how incredibly debilitating it is. A little background is probably necessary.

According to the NIH* “Post-Exertional Malaise (PEM) is a cardinal symptom of the illnesses referred to as Myalgic Encephalomyelitis (ME), Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic fatigue syndrome (CFS).

A cardinal symptom is one that must be experienced by the patient to confirm diagnosis of the condition, in this case ME. Although my official diagnosis of ME wasn’t confirmed until about eighteen months ago, my GP and I are both in agreement that this has been ongoing for me since the time of my original RA diagnosis.

So, what exactly is it? And how does it differ from the fatigue experienced by patients with RA or other autoimmune conditions?

The NIH* states that “Unlike generalized fatigue, PEM is much more profound and reduces daily functioning. This symptom is characterized by a delay in the recovery of muscle strength after exertion, so it can cause patients to be bedridden for multiple consecutive days.”

And this is exactly what I’ve just been through. More recent studies into PEM recognise that the earlier criteria of ‘exercise’ was misleading and led to confusion amongst patients affecting diagnosis, ‘exertion’ is now used to provide a clearer picture, and it’s recognised that this can be mental or physical exertion, and that the physical exertion has a much lower baseline than in the standard population, as patients with ME are rarely able to exercise.

So we know PEM is profound and reduces daily functioning. But what does that look like? And how does it feel in real patient terms?

The NIH* describes it as “a worsening of ME/CFS, ME and CFS symptoms including fatigue, headaches, muscle aches, cognitive deficits, insomnia, and swollen lymph nodes. It can occur after even the simplest everyday tasks, such as walking, showering, or having a conversation.”

Seriously? Showering? Having a conversation? Actually yes, and in my experience having conversations, chatting, talking, call it what you will is incredibly draining. That doesn’t mean it can’t be enjoyed, but it does mean I’ll often pay for it later.

I’ll try and describe as clearly as I can how I was affected this weekend. I came home Sunday evening from visiting my Dad, which involves more driving than I would usually do. I want to make it clear here that I’m not blaming you Dad!! ❤️ Going to Waitrose or even popping out for lunch can have exactly the same effect. That’s the point. It doesn’t take much. And it doesn’t have to be physical. Dealing with simple paperwork for a short time can do the same thing.

So, Sunday afternoon. The first sign for me is usually yawning. Before I had ME I never thought of yawning as being a physical thing, but this can drop me to my knees. It’s like my whole body yawns with me. A couple of friends in my regular social circle will spot this a mile off now, and they’ll simply say ‘time to go home’. Apparently I suddenly look exhausted. Always attractive!

I’d say that on average within twenty minutes of this yawning starting I’ll be asleep, there is no choice, no putting it off. It’s like my whole body is simply shutting down. My head stops thinking, my muscles go heavy, and I can barely walk.

I lay down on the sofa at about six pm on Sunday, and only came to properly at about 6am this morning. So that’s 36 hours of basically being unconscious. I know I woke twice when my alarms went off to take my meds, and I know there was a third alarm I ignored so I missed a dose. I know I briefly came to and made a coffee at about 7pm on Monday, and it took everything I had to get into the kitchen and back. The rest is a blur of weird dreams involving a pub fire, going swimming in Italy and a trip to a theatre. Strange but true.

So that’s 36 hours lost so far. When I woke at 6am this morning I knew the worst had passed, the almost coma like feeling had gone, and my mind is awake to some small extent. Enough to slowly write this at least. But I have zero energy, and little concentration. From experience it will take another 24 hours at least before I’m able to actually get up and shower. I won’t be able to read or follow a TV plot properly, and I will probably sleep a lot today, though hopefully more refreshing sleep, not the passed out exhausted-ness of the past two days. Although it’s not an experience I’ve had I imagine I probably feel about the same as a marathon runner the day after, when everything hurts and you can barely move!

This is not a rare occurrence, it happens about once a week. I can lose from one to three days. I do pace my activities quite carefully, plan down days around days I have to be up and out, whether for medical appointments or social. I live alone so I try to get out three times a week for a couple of hours each time, usually a couple of coffees or soft drinks with friends. It’s incredibly easy to become isolated with chronic illness and it’s so very important we don’t.

So today will be a ‘sofa day’, as it happens it’s very rainy and dark outside so a perfect day for a couple of daft movies and snoozing. Then, fingers metaphorically crossed, I’ll feel human again tomorrow 😊

Footnote – it’s curious but common in #chroniclife to feel the need to validate ones symptoms and experiences, especially with something like ME which is incredibly still dismissed by some doctors. In this instance I’m actually glad I was wearing my sleep tracker, which has recorded 23 hours of sleep for yesterday. Proof!

*I have referred to and quoted from the American NIH or National Institute of Health because I find their website carries clear and up to to date articles. The full text that I’ve quoted from can be found here.

Batch Cooking, Spoonie Friend

Most of you probably don’t know that I trained as a chef when I first left school, and I’ve worked as one covering for friends over the years.

I’ve always loved cooking, whether for six or sixty, I just love the whole process. There’s something wonderful about taking a handful of ingredients and coming up with something that tastes wonderful!

Unfortunately for the past three years between RA and fatigue cooking has become a real challenge. Fatigue makes cooking impossible most days, my hands don’t like chopping and mixing and my appetite isn’t good.

But now and again I have an OK-ish day and think right, let’s do this quickly while I can. I have a tall stool with a backrest in the kitchen so I can sit at the counter and work.

Whenever I can I batch cook. This means tasty things in the freezer that can be ready in minutes and aren’t shop bought ready meals or junk (obviously those do have their place occasionally!).

My favourite things to batch cook I can create with my eyes closed, I make a mean chilli con carne, fabulous curries, spicy arrabattia sauce for pasta, and herby meatballs. All freeze really well. Lasagne is another good one, but yesterday I wanted to cook and I did something different.

I should mention that I have a secret, I’m not the best veg eater in the world. So every dish I make has hidden vegetables. My arrabattia sauce gets blitzed with cooked broccoli and spinach, I use grated carrots in everything (cook them off with the onions), and spinach has become my go to for anything!

Now what I fancied last night was macaroni cheese. One of my all time favourite meals, but obviously not great nutrition wise. And as I’m trying really hard to eat healthily I adapted.

After a furtle in the fridge I had ham, onions and mushrooms, peas and spinach came from the freezer. So I just slowly sautéed all the veg in olive oil, then added skimmed milk, cornflour to thicken and some grated cheese, mustard and black pepper.

Poured this sauce over some cooked pasta in a baking dish, topped with grated cheddar and parmesan. Twenty minutes in the oven and this gorgeous pasta bake was ready.

I made enough for four portions, so this morning the other three have been added to my stash of “ready meals” in the freezer. As far as I’m concerned batch cooking is a spoonies best friend.

Love Is All

A very beautiful & treasured friend of mine has lost her husband suddenly & so unexpectedly. I am stunned, and I am so sorry for her and her family’s heartbreaking loss.

I just wanted to take a moment to say please hold your loved ones close. Then hold them closer.

Make the words I love you the most common ones you use, and mean it. It is not a cliché to say not a single one of us are guaranteed tomorrow.

Make your loved ones your only priority. Forget the extra shift at work, it’s so damned unimportant. Forget who put the trash out last, who cares? Hold hands, dance together, sing together, scream together, spend time with each other.

Talk about inconsequential things whilst looking at the night sky, talk about the important stuff whilst looking into their eyes. Smile in the rain, laugh in the face of storms. Time is the most precious gift we ever give to others, and it’s so fleeting.

Make your moments count, fill them with laughter, make memories. Remember this means all of those you love, not only partners and children and parents, but the family we choose for ourselves, our friends.

Don’t put off that lunch date, or keep forgetting to make that call while time slips through your hands like water. Love with all of your heart as fiercely and as loudly as you can, because when it comes down to what’s real it’s all that matters.

Love is everything. Namaste 💙

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!