Narcissism or Progress?

Posted on by SingleRheum

A really interesting question was raised in a forum this evening (thanks Lisa). One of those moments when you’re pretty sure you disagree with a point that’s been very well made but you have to stop and think, why?!

I’ve been struggling a little with ‘bloggers block’ recently so I’m actually doubly grateful to the lady who set my writing brain in motion.

In essence she asked if, in today’s society, we as RA patients have become narcissistic and lazy. Looking back at her grandmothers’ with RA who farmed, harvested crops, made canned goods and ran a family with time for everyone to feel loved and no complaints, she feels that we perhaps focus more on what’s wrong instead of counting our blessings.

“Sometimes I think my grandmothers with their knarled little hands dealt better…. … and continued to live and love life”

So do we dwell too much on our conditions? On the face of it a not unreasonable question, but then I applied it to myself and my instinctive response was an immediate no. So now I have to process why… Or work out if I’m just self delusional!

I think we are comparing apples and oranges. Our grandmothers lived in a very different world. Mine was born in 1905, well over a hundred years ago. Home electricity would not become commonplace for another 25 years. Women having equal voting rights was still 23 years away and there were another 43 years before the National Health Service was created. Your choices for medical care in the UK were private for the rich, or relied on charity for the poor.

I’m going to digress a little here, please stick with me. In 1914 Rheumatoid Arthritis was believed to be caused by Tuberculosis. Intravenous Gold Therapy was used with RA patients simply because it worked for TB. A clinical study in France in 1932 proved that, accident or not, it had therapeutic value. In 1948 after years of research with biochemist Edward Kendall, Dr Hench of the Mayo Clinic in Minnesota tried Cortisone on an RA patient for the first time. He and Kendall were awarded the Nobel prize for this breakthrough in 1950.

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But still clinical treatment was for damage after the fact. Not until the 1980’s was Methotrexate, the first DMARD (Disease Modifying Anti Rheumatic Drug) introduced. In the later 1980’s research was making breakthroughs, the TNF (Tumor Necrosis Factor) was discovered and new treatments started to be developed, leading us towards the biologic options we have today.

Fascinating stuff right? But it has a point. My theoretical grandma with RA would have been 45 in 1950. It’s fairly common for people to be diagnosed at around this age. Her only option for treatment was cortisone. There was no way to stop the crippling damage. Fast forward another 30 years to her 80th birthday in 1985 and maybe, just maybe, she would have been offered Methotrexate for her final years. But much too little way too late.

So let’s think about her options as this debilitating and crippling disease with its pain and fatigue took over her body. Societal norm was to keep medical matters private. You didn’t mention things to your family, let alone friends. You put up and you shut up. So, feeling alone in her pain she carried on. There was no other option, cooking for the family, looking after the grandchildren as they came, washing and cleaning daily because it was women’s work. Who else would do it?

I was born in 1970, and I was diagnosed at 45. But my life is very different. I have washing machines, computers, newer medicines and diagnostic tools, the Internet and rigorously trained doctors with a wider knowledge of RA. I don’t have family next door and children to look after, but I’ve had to work all my adult life until my disability made that impossible.

But you know what I think is most important, in some ways way even more so than the newer drugs and research? I don’t have to suffer alone or in silence. I can reach out to my friends and family for help, they know what’s wrong because it’s OK to discuss health issues openly. I can reach out through forums and blogs and twitter and share experiences and knowledge and pain and frustration as well as the joy with the online RA community. I’ve both received and given support, and I’m grateful for the opportunity to do both.

So do I think I’m narcissistic or lazy? Do I think our Grandmothers were somehow stronger? No and no. We are a product of our upbringing and the society we live in and, thankfully in this case the rules have changed. And I definitely think that’s for the better.

With reference and thanks to ‘The Rheumatogist’ article A Short History Of Rheumatoid Arthritis Therapeutics by Simon M Helfgott MD for some of the historical information included here, any errors are wholly mine.

Trying to catch the rain….

Posted on by SingleRheum

This may start by sounding a bit egocentric, but sometimes I’m fascinated by the way my mind works! I mean the underlying subconscious thoughts we have, without any kind of input from our conscious self.  Just now and again I catch myself doing something and I stop and think why? And then I realise the why and gently correct myself. 

I guess it’s a technique I picked up from my CBT course last year, not chastising myself for having thoughts that are unhelpful or incorrect, but gently addressing them and turning them round, hopefully learning as I go. 

It’s happened this morning with something I posted in a closed group on facebook, I’ve pasted it exactly below…

Just wanted to share a positive day for a change 🙂
Finally finished the to do list I started about two months ago, including sorting address changes, closing a couple of accounts and filing a tax return for last year. 
Huge sense of relief from sorting stuff, I suffer with anxiety and paperwork kicks it off, so I’m really proud of myself for doing this today!

I shared this for two reasons, mainly because I do feel proud of achieving this, and also because I thought it might help someone else who has similar issues.  I received some lovely responses, saying what an achievement it was, and that I’d done really well to tackle it.  Then ‘it’ occurred to me.

Why had I shared this in closed groups but not on my own timeline? Let’s be honest, we all like to share our achievements with our friends and family, it’s a lot of what Facebook is.  So why not this?

I realised almost as soon as I’d asked myself the question what the answer was – sharing this as an achievement meant sharing that I find something as simple as sorting paperwork a struggle. And for me that’s quite a big admission, a weakness if you will.

I’m someone who had identified myself very closely with my work for a long time, and work meant budgets, spreadsheets, contracts, project management, business analysis, strategic planning and problem solving.  How do I then turn round and admit my brain just doesn’t work in the same way anymore?

Since my RA/Fibromyalgia symptoms started I’ve been increasingly suffering with ‘brain fog’ – a recognised term amongst those with chronic illness.  It’s like trying to catch a handful of rain, little drops make my grip but the rest eludes my grasp. Words dissappear from my mind at the precise second I want to speak them.  Memory jumps, so I can lose track completely mid sentence. 

It makes trying to deal with anything that requires concentration difficult.  And once it becomes difficult I become anxious.  And the anxiety affects concentration.  You can see where this leads…..!! Paperwork is bad, having to make phone calls related to it is nigh on impossible. 

So I procrastinate, I make lists, I shuffle them around. I move papers from one room to another.  I sort them into order, then I sort them again.  Anything but sit down and deal.  And suddenly two or three months have slipped by and I’m annoyed with myself for not getting things done, but no closer to actually doing. 

What changed yesterday? In simple terms I had a less ‘foggy’ day, the fatigue wasn’t as heavy as usual, the pain was lower for a few hours.  So I used the time, and I’m really glad I did.  It’s like a weight has been lifted, I tend to turn the things I put off into mountains to climb, when in fact a couple of hours with a coffee and the laptop and I was slowly but surely caught up. 

So, going back to my starting point here, I have been kind to myself this morning.  Yes I did well yesterday, and I should feel proud.  And that means feeling proud ‘out here in the real world’,  where if I’m honest no one who matters is going to think any less of me, and anyone who has suffered with brain fog &/or anxiety will understand completely. 

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Cyberhugs are Magic….

Posted on by SingleRheum

A friend with RA & Fibromyalgia messaged me this week to say that although she was at home with her loving family, she felt very tearful and alone.

I started to message her a response, and then realised this sense of distance, of separateness, is only something I’ve really noticed since being diagnosed with and talking to people with a chronic illness.

So why is being Chronically Ill the loneliest thing in the world sometimes?  It’s certainly no reflection on anyone’s company, I suspect it’s because we can be talking and laughing,  but behind that we are constantly hurting, a never ceasing reminder we’re not the same. We can’t just go on a trip or sit on a stool or wander into the shops. Or even have a simple glass of wine.  It’s tough feeling different, so sometimes we do feel completely disconnected from those around us.

I’m so grateful that I was diagnosed with a chronic illness in the days of the information super highway, because with it those of us who feel we are alone actually never are.  The isolation is almost immediately eradicated by typing a few words and pressing enter.

Within seconds I can be chatting via IM to friends in the UK, US, Canada and beyond.  We can, thanks to the magic of the Internet share thoughts, feelings  photos, hopes, dreams and fears.  And amazingly lovely, kind, generous people who absolutely get it respond.  A cyber hug should never be devalued.

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I’m proud to say I’m a small part of the RA community on Twitter. I am honoured to belong to a few groups that will never show up on my Facebook feed because they are private.  They are ‘safe’ & loving places to chat with others, compare symptoms, vent, laugh and cry about the daily frustrations of chronic pain, ever changing meds and the annoying variance in advice given by consultants who are supposedly all experts in the same field.

So my immediate support network is made up of my family, my wonderful ‘local’ friends, and a number of very good online friends who I just haven’t met yet.  They are all equally important, when I need to reach out, a quick pm or tweet or post and my RA family are there.  I’m incredibly grateful for this, because I think our pain separates us somewhat from the ‘norm’.

We live within our minds a lot of the time because we have to. 
We lie awake a lot because we have to.
We live slower because we have to. 
We appreciate the small stuff more. 
We become more observant.
We become more self aware.

And having given this some thought, I believe that as a consequence of these gradual changes we are more self intuitive, so we notice this disconnection that we would never have seen before. It would have been filled up with the busy and the clutter of ‘normal’ lives being lived.

The media makes headlines of how much harder it is to be alone at this place in time, something that is often criticised as overload.  And for many running between family, work, friends, parents, school etc there is little space for genuine alone time, quiet contemplation of our place in the world.

But for those of us who spend days in bed, hour on hour alone with pain and fatigue, those who, like me, see 3am far too often (and not for party reasons), there are endless aeons of time to question our value, our worth, our place in this world that measures life and success by income and productivity.

So I am thankful for the wizardry of Sir Tim Berners-Lee  & Co, who probably would never have forseen that their Internet would allow those who are vulnerable, and at most risk of becoming disconnected from the world, to not only participate but to form very real and solid friendships with strangers, bound by chronic illness.  And that truly is magic.

Falling into Fall…..

Posted on by SingleRheum

Where to start? I’ve not posted in a few weeks, partly because of moving into my own place at last ☺ but also because I’ve been sliding into a dark place mentally.  It’s kind of ironic to think you’ve hit the bottom then find actually there’s a way further to fall. 

So here I am, I promised myself when I started this blog I would always be honest, and being an advocate of openness about mental health it would be hypocritical to hide my own black spaces.  This is tough both to put out there, and to put into words, but bear with me…..

I think most people with chronic illness are probably aware of the pain cycle, but in it’s simplest terms….

(pain = low mood = depression =  increased pain = lack sleep = fatigue = low mood = pain)

…. our thoughts and feelings can very much affect how we feel physically, and vice versa. 

These happen in no particular order, but each symptom impacts the next, so the pain felt increases, and the mood lowers further.  This is not to say for a moment the pain is not real, but that our perception of its impact on our lives affects it’s actual impact. 

I had high hopes (perhaps too high) that once I’d moved into my new place I would suddenly start to feel better, logic would certainly dictate that being homeless was a stressor, which has been removed.  Instead, I’ve been almost free-falling.  Thankfully I’ve learnt to recognise over the past three years or so when my mood is dipping, and after a bad anxiety attack yesterday, (and some prompting from my online RA family – thank you squeakers) I made an emergency appointment with my lovely GP this evening. 

“I don’t know how to do this anymore” were my first words to her.  Thankfully she wasn’t phased by this, she knows me pretty well.  I had just reached a very dark place where all I could see is pain and exhaustion forever, and  I don’t know how to live with that – thinking about it now I doubt anyone could, that’s a pretty bleak outlook.  Fortunately somewhere deep inside I am fully aware that depression is a huge LIAR. 

So next steps…  Improve mood, to improve sleep, to improve energy, to improve mood….  You get the picture. Doesn’t it sound easy, especially as my condition causes fatigue!  This is going to mean a change in anti depressant as these are no longer working for me, and this indicates a few weeks of me being a basket case, but I know it will pass.  I ask forgiveness in advance if you meet this slightly deranged me 😈

The pain will hopefully be dealt with at least in part by my rheumatologist next week, I strongly suspect I have fibromyalgia as well as RA, but that will be diagnosed or not and treated as well as we can. 

I have so many medical appointments over the next month it’s crazy, between the GP, rheumatologist, hand physio, general physio, hydrotherapy, musculoskeletal physio, blood tests, and pain management psychologist I’m busy! Yet I will be making a call tomorrow to add on one more, to access some talking therapy (CBT) so I’m doing all I can to support my return to a strong place mentally and physically in time.  I have nothing but praise for our fabulous NHS, I’m so grateful for the very thorough support.

As an aside tonight I have done something I’d not realised I’d stopped doing, and that’s listen to music. I don’t think I’ve put a CD on since June, which is really unusual for me, music has always been so important to me. I’ve been digging through my collection, hitting the volume up and simply listening, after about three hours of some of my favourite chilled tunes I’m feeling almost purged, though I suspect admitting I need help has helped hugely. 

Please, if you are reading this and feel in any way you recognise yourself, reach out, help is there.

Love & light as always 💙

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All change…. & cats!

Posted on by SingleRheum

Sometimes fatigue hits me hard for a few days, this last weekend has been one of them.  I’ve slept like it’s going out of fashion since Friday, guessing it’s finally passing as I’m writing this at 5am! Feeling tired but not sleepy, but I think the exhaustion has burnt itself out for a few days, for which I’m grateful.

Annoyingly this particular blip hit half way through RA blog week, so I only completed four out of seven nominated blogs.  I may pick up on a couple of the other titles soon, as I still have ideas in my head ☺

However some great news has cheered me up today, so I am hoping my energy continues for a few days. I finally had the call I’ve been waiting for, I have an official move in date of 1st October, my bungalow is ready!!  Trying to get excited about this was hard today, it felt like I was trying to push the world uphill, but this (early) morning I’m planning and smiling, I’m really looking forward to being in my own home again, and best of all getting my beautiful cats back home with me.

If you’d have told me in June I’d be in this B&B for the homeless until October I’d probably have broken down.  Don’t get me wrong, I’m hugely grateful for the support from my local authority, they have been amazing.  But it’s been a very long summer!

Still, I made it.  I’m very much focused on the next couple of weeks now, turning this new place into a home for me and my cats.  It’s the little things I’ve missed, having my own cooking stuff around me, using the dvr, just having my own clothes & books around me.  Ohh and my bed! I cannot wait to get back into a decent bed ☺

I’ll take it one day at a time, I have this weekend before my stuff arrives out of storage on Monday to get a feel for the space and what will go where, and I’m hoping (if my hands allow) to just slowly paint one wall in the much needed wet room, I’m determined to take away that hospital look!

I know I’ll need to pace myself with unpacking, thankfully the removal guys will put everything in the right room, so I can just work through the boxes at my leisure.  I also know I have friends I can call on for help, they have come through so amazingly for me this year, I’m incredibly fortunate. 

So, hopefully the next blog you see from me will be from my lovely old sofa in my very new home….. With these little munchkins demanding my attention  ☺

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Five things I have learned.. #RAblog week #4

Posted on by SingleRheum

Today’s #RABlog week prompt is as follows…

Five things I have learned – write about the five things you have learned about yourself, or RA. Perhaps you have learned what things like physical pain, injections, or morning fatigue are like? Perhaps you have learned new things about yourself?

RA has made some huge changes to my life over a very short space of time, so my five things learned are personal, though I suspect not unique, to me…

1. Status & money just aren’t important – I obviously don’t mean I don’t need money to live,  this is probably the hardest thing to put into words, but my priorities have changed completely.  I’ve never been about the big ego or being flash, but I worked really hard for my career and was comfortable because of that. For a long time I almost subconsciously defined myself by my work, my life was built around it.  Having to stop working in March due to RA was emotionally as well as financially frightening.  But I’ve had a lot of time to think, and I realised it just wasn’t important, my focus has changed.  I want to return to work as soon as I am able, but perhaps in something more personally rewarding & fulfilling. As I am likely to be off work for some time, at least until I hopefully find a med that controls my RA, I have almost the ‘luxury’ of rethinking what I want to do. That’s not an opportunity many get, and I intend to use it well.

2. I couldn’t survive without my friends – I’ve seen many people say they lose friends through RA, it’s easy to become isolated when you can’t always be relied on to turn up when invited.  Maybe I am just very lucky, but the people I count as my closest friends have each been a fantastic support in different ways, and a couple of people I considered acquaintances have proved to be very good friends.  Trust me when you need helping packing, cleaning and moving because you can’t bend, kneel, lift or use a hoover you find out who’s really there! I love you guys, you know who you are.

3. My GP is an absolute star – I sort of knew this already, I’ve been with her over three years and she’s always been compassionate and supportive, through both mental & physical health problems.  When I first went to her with a suspicion of RA, she listened, agreed, promptly ordered tests and has been a great liason between myself & rheumatology.  She knows me, she spots when I’m down, she asks about my support network and cares how I am feeling. No appointment is rushed, no medical topic unspoken. I would just be lost without her. 

4. When you think the world is ending, it doesn’t – this sort of links to my first post, I have lost my mobility, my energy, my income and my home.  Yes, this has exacerbated my depression & anxiety, BUT…  I’m still here! Still standing, still learning,  still enjoying the small stuff and dealing with the bad.  Things are starting to turn around a little with a new home & rheumatologist this month, however different it may be from what I was expecting from this year, I’m still living, smiling & occasionally kicking butt! Please believe me, things are never as dark as they seem.

5. People actually enjoy my writing! – I think for me, the huge positive that has come from RA is this blog.  I’ve always enjoyed writing, bits of fiction, occasional poetry and just playing with words, I love that language allows us to express ourselves, to share with others our experiences and knowledge.  However I’d spent years just writing for me.  Somehow this blog began, mainly as a way of me processing what I’ve been going through, it just helps me to write things down.  I never expected in a million years to receive some of the amazing feedback I’ve had about my blogs, I can’t tell you how magical that is for me, so thank you so much for reading  xxx

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Explain Your RA.. #RABlog week #3

Posted on by SingleRheum

Day 3 of RAblog week, our prompt is…

Explain your RA – perhaps you want to tell someone else, (doctor, sibling, child) pick a person and decide what to tell them. You might want to tell them about living with RA or what it is like to have RA? Perhaps you want to write a letter to a fictional person. You might also choose to write to a newly diagnosed person about life with RA.

I’ve been pondering this one for days, who to write to? Friend, family, doctor, rheumatologist, physiotherapist? But they all at least sort of understand.  So, a stranger then, someone who needs understanding but doesn’t have it.  Then like a light bulb moment it hit me.  To all strangers, to those who glare at us for having disabled parking, who moan about us taking benefits or think we’re addicts for wanting pain meds that are strong enough to be of use.  This is for you. 

Dear Stranger,

I’m asking for just a few minutes, that’s all.  A few moments when you put your prejudice aside and listen.  When you allow yourself to stop judging, and hear me.  I believe it will help both of us, shared understanding certainly brings empathy and compassion. 

This time last year I started feeling tired.  Sounds so innocuous, we all have off days. By December I was tentatively diagnosed with RA, and at this point I was getting really bad inflammation and joint pain, I couldn’t move my left shoulder, or use my hands.  I had to ask people to cut up my food on occasion, just think for a moment about how helpless that might make you feel?

I was officially diagnosed with RA in March, and by this time I had done quite a lot of research, and to be honest I was scared. Really scared. I was having more & more time off work, and I was now getting joint pain all over, feet, knees, hips, elbows, shoulders, wrists, hands, lumbar spine.  On top of this the fatigue was getting worse, causing ‘brain fog’, making holding meetings or working on contracts for work almost impossible, I would lose words mid sentence, concentration on and retention of facts and numbers was just not happening.  And I was so, so tired.

I was also aware by then of the fact that RA is systemic, meaning it can attack elsewhere in the body, affecting the eyes, heart, lungs etc.  And just to top it off the first med I was prescribed increased my risk of developing lymphoma, losing my hair and liver damage.  It’s a tough disease requiring tough medicine.  I was signed off work in March, meaning I lost my income.  I live alone. 

So yes, I have had to claim benefits.  I lost my home, and I’m very fortunate the council are shortly providing me with an adapted bungalow.  Believe me no one wants to return to work more than I do, at the moment it’s just physically impossible. I can barely walk on crutches and I’m in pain 24 hours a day.  Yes, I also have a disabled parking badge.  I couldn’t function without it. 

And as far as I’m concerned that’s exactly what our benefit system is for, it’s a safety net for those, like me, who through no fault of their own need financial assistance just to live. 

RA is known as an ‘invisible illness’. Symptoms aren’t obvious from the outside. So please, can I ask that next time you see someone who looks ‘healthy’ using a blue badge, or having to  cease working and claim, you stop and think, just for a moment.  I am ill, the last thing I need is to be judged. 

Kind regards,
Denise (on behalf of all with RA).

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Managing Fatigue… #RABlog week #2

Posted on by SingleRheum

Today’s blog week prompt is this….

Managing RA fatigue – We all know that fatigue is a big part of many of our lives. How do you manage that fatigue? Perhaps you like a warm cup of tea or a hot bath. We all have our coping strategies. Describe anything you do to help with fatigue.

That seems like such a small question when in fact it’s ridiculously large, fatigue has been my own personal demon since way before diagnosis, it was the first sign I had that something was wrong, and it started this month last year.  My one year fatigue anniversary, whoop-whoop!

I need to be honest here and in the interests of ‘full disclosure’ (lol) start by saying that my GP is in the process of diagnosing me with ME/CFS, so my fatigue may be more excessive than RA fatigue alone. 

So, how do I manage fatigue? I’ve been told by doctors and rheumatologist’s that fatigue is the hardest symptom to treat.  It’s difficult to explain to anyone who hasn’t suffered with it exactly how debilitating it is.  The fatigue is the main reason I had to stop working in March, the joint pain and mobility were obviously big factors, but the fatigue was the final straw.

I could use a hundred analogies and none would suffice.  It’s like carrying a weight, walking through water, swimming against the tide, trying to move mountains. The closest I can come is that fatigue makes me feel heavy, too heavy to move or think or just stand up.  I don’t want to eat or drink or talk or write, everything seems to involve superhuman powers that I just don’t have. 

If I’m honest I’m not sure I do manage my fatigue, I’m not sure that’s even possible.  What I do is cope.  I am used to the very bad fatigue days now, I usually have two or three a week minimum, so I’m prepared.  I keep in things like cereal bars, bananas, grapes and bottled water, really easy stuff to keep me going, there is no chance of cooking! I’ve always been an avid reader, so I make sure I have books to hand, and I’ve just discovered the magic that is Netflix when one is unable to leave the sofa 🙂

I no longer worry about these days, I used to find them incredibly stressful, because I’d feel guilty, adults don’t just take pyjama days, that’s not productive!! Actually I’ve discovered it’s the most productive thing I can do.  I’ve learnt to listen to my body instead of years of conditioning to “push on through” or “not be lazy”. If I take these rest days when my fatigue flares up, I am a better and more relaxed person because of it.  It also gives me energy for later days when I can function, rather than never having a minute when I’m not exhausted. 

I realise this is not considered ‘normal’, but it has become mine and I’m learning to live with it.  So if you catch me in my pyjamas at 4pm, believe me I’m not being lazy, I’m giving myself the best self care that I can.

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A Day in my life… #RABlog week #1

Posted on by SingleRheum

It’s ironic that, with the first blog due today (Monday) for RA blog week, I’ve been in a flare all weekend and am now trying to type furiously at the almost final hour… 10pm is still Monday, right?

I had a lovely clear weekend planned, I was a even cat-sitting at a friends with a sofa, Internet etc, I was sorted! And then it hit, I’ve barely had the energy to take my meds, unfortunately we all know those days! So I’m literally deciding as I write, do I cover a day like today, or a slightly more ‘normal’ day?

To be honest I could sum up today in a couple of words, sleep, pain, sleep, so let’s skip that and look at a slightly more average day.  I’m not sure three word blogs are quite the thing 🙂

My first thought when I saw the topic “A Day in my Life” was how short my days generally are – at least the functioning, thinking, moving part of the day.  Someone online mentioned a three hour window recently, and it immediately resonated with me.  It takes me an hour or so to come round in the mornings, I was never an early bird but now I’ve made slow mornings an art form!

So let’s say I wake at 10am, by 11am after a coffee or two I might be ready to face the shower.  This does help ease the aches, the warm water always soothes even the sorest joints for a brief while. Then there’s getting dried (awkward when only one arm is moving properly and you can’t bend), sitting down to rest, then getting dressed, sitting down to rest (I’m not exaggerating here, the process exhausts me),  and that’s without dealing with my hair.  On a lot of days it just goes up wet, blow drying can seem just too much. 

So hopefully by 12 noon I’m in one piece and ready to face the day. I say hopefully because on worse days I’ve been known to hit this point and just stop – my body says no. 

So this is start of the ‘three hour window’,  I might go out, meet a friend for lunch or coffee, see the physio or GP or maybe go to a store for a book or a little food shopping, small things I know I can do without walking too far or wearing myself out. Some days I make four hours or so if I’m sitting chatting with friends, but five hours is my absolute max even on a very good day.  By that point I will physically droop.  I have to make sure to leave with enough energy to get home and get into bed.  Of course if a joint is really flaring this can shorten things dramatically, pain is a great incentive to get home!

It’s so, so hard to explain how doing what most people would see as a day of leisure leaves me on the floor.  I also really struggle to do two of these days in a row, so I try to plan hospital, physio and GP appointments as well as coffee or lunch on alternate days, so I get a day at home, then a day when I’m out. 

There is however a big upside to this.  Because I’ve got used to this window I have to work within, I do make sure I prioritise what I spend my time on.  So I plan around the medical appointments, so I can see friends, or family, sit somewhere with a nice view, enjoy the sunshine or just have a really good coffee while reading.  That leaves me the evenings when I’m resting for writing if I’m in the mood. I am probably more careful about how I spend my time now that at any other point in my life, and that’s got to be a good thing!

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Poem… Would I?

Posted on by SingleRheum

If today was the end of all I could be, would I be replete, looking behind me?

Was I loved so well, did I love at all, was my passion as wild as my mind can recall?

Did I run with the wind on a hot summers night, did I laugh at the storms and draw heat from the light?

Did I dive in headfirst, embracing the chill, did I swim with the tide or against for the thrill?

Did I ride with abandon, embracing my fate, or weave a path of my own, only one I could make?

Did I fly t’ward the stars, and smile with the moon, did I start life too early and leave it too soon?

Did I chase down my dreams, did I hunt where they hide, did I once try to seize them and keep them alive?

Did I love with abandon, my soul soaring free, did I sing every word as if written for me?

If today was the end of all I could be, would I be replete, looking behind me?

Was I loved so well, did I love at all, was my passion as wild as my mind can recall?

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