Showing Phil Mickelson where to shove his Nine Iron and other neat tricks. 

My beautiful RA friend Billie has started blogging. Her honest, pull no punches approach is speckled with humour. Please read 😊

RA in the Raw

You’ve all seen it. TheEnbrel commercial. You know the one, where Phil trots merrily over miles of manicured golf course without a care in the world thanks to Enbrel all but curing him of his Psoriatic Arthritis! Take it from me; one wrong step over something as minor as an anthill is going to have you wanting to wrap that nine iron around ‘ol Phil’s head quicker than Tiger’s wife when she busted out his window to ‘save him’ that Thanksgiving day.

On one hand, seeing a celebrity come forward with a like-minded affliction fills us sufferers with hope. Maybe nowsomeone in the funding department will take notice of what we go through. Maybe nowreal money will go into research! But, more than likely what will happen nowis our peers will look at us and say (or think) ‘If Phil Mickelson can do it, why can’t…

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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!