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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RA & I are in a relationship!

Posted on by SingleRheum

I realised I’d posted an oddly worded comment in a group yesterday, saying “I’ve been with RA for about ten months”.  I read it back and almost laughed, because it read like we were in a relationship.  Then it occurred to me that we very much are – and good or bad RA and I are together for keeps.

So I began to think about RA in relationship terms (yep, I couldn’t sleep, this is what my mind does at 3am!).  What would I normally look for or expect in a relationship and how does RA measure up? We’re ten months in, we know each other now, surely time to reflect? So here goes……

Comittment & loyalty – RA scores top marks here, it has waltzed into my life, swept me literally off my feet and promised to never leave.  Nothing I do or say will ever drive it away, good days and bad days it’s right here with me. In return I’m just as committed to kicking it’s butt.

Closeness – RA is with me, body & soul, it occupies my mind and my senses night and day, RA and I will never be alone again.

Support – I feel I should give RA full respect here as it has the best intentions. RA is the staunchest defender I have ever had, it patrols my body and repels all threats voraciously and with a fervour seldom seen. However RA loses marks here for being very, very stupid. It is unable to differentiate between friend and foe, and just throws tantrums randomly at will, causing irreparable damage.

Laughter – Oddly RA is quite good at generating this, RA totally gets that I have an ironic sense of humour, and just knew that I would see the funny side of getting liver damage from meds during the one time in my life I’m not drinking! It also appreciates that it is amusing to be stuck in a hotel bath for half an hour, or to slip on the wet shower tray.  Oh how we laugh, RA & I.

Honesty – It has to be said RA occasionally tricks but it never lies.  It let me know from the start the kind of pain it would be putting me through, and led me almost gently into the debilitating fatigue that is now such a big part of our life together.  Now and again it teases me by giving me a couple of low pain hours, or a short burst of energy, but it never lies and I know it will always come back to me.

Romance – this is probably RA’s weakest area. It’s doesn’t do socialising or meals out, hates travel, and dislikes long walks in the countryside or strolling on the beach.  It’s not fond of cooking or holding hands or writing long loving letters either.  However it does enjoy snuggling up with me at night just so I don’t forget for a moment it’s there.

Hmmmm.  Looking at it this way you’d think RA & I had an almost perfect relationship, which is very far from the case! Perhaps one day I’ll learn to accept RA’s ‘little quirks’, but in the meantime if someone spots a divorce (cure) do let me know!!

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Walking the Maze

Posted on by SingleRheum

Today I had some news that left me for a while feeling almost enraged.  I wanted to scream, shout, punch something, shout at the world and tear down walls. 

It’s a delay in my housing, which whilst frustrating isn’t the end of the world.  However my mind had got used to planning for moving in the next fortnight, now it could be over a month.  Hence the instantaneous combustion!

I know myself pretty well, so I just gave my head a few hours to shut down and process, I usually hit a TV show so on the surface I’m distracted but behind the scenes my brain does its thing.  I know the reason for my almost ‘fight or flight’ response, and it’s very simply down to a lack of control. 

I have spent a lot of time as an adult managing things, I naturally pick up projects whether at home or work and run with them, because that way I can influence the timescales, the strategy, the outcome.  Interestingly the same applies to my frustration with RA, it is the feeling of a complete lack of control that sometimes makes me want to just shut out the world and not deal, after all what’s the point if I can’t make a difference?

I could almost describe this last few months as being in a maze.  I’ve felt trapped and lost, taken turnings that have given me hope only to run straight into dead ends.  No wonder my poor mind just wants to hide under the duvet, this is hard work! It’s as if the walls of this maze are designed to give me tantalising glimpses of the outside world where ‘normal’ lives, just as I turn the next corner into a dead end or another junction.

However… I have no intention of giving up. Yes this has been tough, my housing is still unresolved and my RA still flares constantly.  I’ve had added tentative diagnosis of either fibromyalgia/ME, and as I’ve mentioned before I find the demon fatigue the biggest battle of all.  But my only option is to keep moving.  I make the decisions to go left or right, and if I run into those walls I turn around and keep on walking.  Every maze has an exit, I will slowly but surely find the way towards mine. 

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Fighting talk!

Posted on by SingleRheum

I’ve actually been pondering this post for a few weeks, and just couldn’t think how to start it without sounding like I’ve got a severe case of sour grapes.  I haven’t, honest!

I am simply finding I get, possibly irrationally, annoyed at people on RA forums who do the fighting talk thing.  You know the ones, I saw a classic today, it went something like “well I’ve run two marathons, been skiing and worked all week, I’m not letting RA beat me, you have to fight!”.

On the surface you’d think that was great yes? And I’m truly happy for anyone with RA who manages to exercise well and live a comparatively normal life. 

Unfortunately, every time I see this kind of post I get cross.  The anger is a defence mechanism, because what my mind reads into the words “you have to fight” is a stream of unhelpful thoughts…. ohmygod I’m not trying hard enough, I’m too weak, I’m letting RA beat me, I’m just useless.

Because I’ve done some basic CBT (Cognitive Behaviour Therapy) I can recognise these thoughts when they happen, and I then gently challenge them.  So the conversation in my head goes something like this…

I’m not trying hard enough…... OK. You are taking your meds, you are following your doctors advice.  You are learning to pace yourself.  You are reaching out for help.  What else could you do? Hmm, yes, I’ve done my best! âś”

I’m too weak…. No, you have a diagnosed chronic illness, and an additional diagnosis pending.  Both cause chronic fatigue.  You’ve got this far, you can do this.  Hmmmm..  OK, one day at a time! âś”

I’m letting RA beat me….. Hang on, this has been one of toughest periods of your life, you’re still rocking up every day, you’re keeping hold of your sense of humour and you’ve made some fantastic RA friends.  Hmmmm… Not exactly quit, have I!

I’m just useless. Not at all.  Since day one of your diagnosis you’ve worked hard to become an informed patient and an advocate for others with RA.  Strangers have thanked you for support.  You really are useful, and you can grow this as and when you are able. Hmmm patient advocacy is something that interests me! âś”

What you need to bear in mind is that this all takes place in nano seconds,  the anger response, the gentle challenge, the positive replacement.  But it happens (or something like it) every single time I see an RA patient say  “oh you mustn’t give in, I do three jobs, raise the kids and run yoga classes in my spare time”

I’m hoping this isn’t coming across as a whinge, it certainly isn’t intended! I guess what I would really like is for people to be a little bit more careful with their use of language, and show some consideration. Something I strongly believe having talked with hundreds of people over the past few months is that every RA patient has to work to find their own new normal, within the limitations of their symptoms. 

So whilst I am genuinely happy to cheer on patients who have milder RA, and can still hop skip and jump, please bear in mind those of us who struggle just to sit up, get up and walk.  We are fighting just as hard to get through, just in different ways with different goals.

I’m trying too, honest!

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Time for music…

Posted on by SingleRheum

Have had a slight hiccup in my treatment for RA this week, which is frustrating and slightly depressing.

To cut a long story short I have regular bloods because the chemotherapy med (methotrexate) I’m taking is known to sometimes cause liver damage.  A fortnight ago one of the liver function tests shot through the roof (ALT if you’re interested, normal range 20 to 30, I leaped from 22 to 161 in a fortnight, not a great sign).

My new rheumatologist has reviewed these and advised through my GP that I stop taking mtx immediately. 

I had repeat bloods yesterday, and will be having them weekly for the next month.  Depending on the result of these tests DMARD (Disease Modifying Anti Rheumatic Drugs) therapy will be reviewed and I am hoping she will change me onto a new therapy.

In the meantime my body is feeling kinda battered and I’m totally and utterly exhausted, so I’m sleeping a LOT!

I’m not too worried, I’m being monitored very closely and it’s quite common for mtx to do this, usually once the med is removed the liver just repairs itself, which is pretty cool 🙂

However with no anti Rheumatic drugs in my system I’m likely to feel worse and much more pain for the next few weeks.   This is hard to process, I’ve been struggling enough as it is day to day, and I’m kinda fed up with feeling constantly shattered.  I’m also unfortunately suffering from paraesthesia meralgia at the moment, which is numbness & burning pain in my thigh, it’s nerve pain and it burns, but my GP (rightly) doesn’t want to add any additional meds for this until we get my liver back to normal. 

So, with no other choice in the pipeline, one carries on.  I have no other road I can take at the moment, than to rest as much as I need and take care of me.  I have to keep reminding myself this is not time wasted, it is time my body needs to both fight my RA and repair, and I must not feel guilty.  I do feel cheated, I lose time to this and it frustrates me, there are so many things I would love to be doing, but even simply going for a walk is beyond me at the moment, too much pain and too little energy. I’ve got my spinal MRI next week, so hopefully some more answers are coming soon. 

So in between sleeping I’ve been reading a lot, books have always been my refuge and a joy, so time to lose myself in a book is very precious and appreciated. I’ve gone through 15 in the past four weeks, so will need to raid a charity shop again soon for more!

I absolutely keep faith that things will get better, this is just a temporary phase in my illness and on the positive side I’m able to listen to music for hours, I’ve got my mp3 on shuffle and I’ve rediscovered some great tracks today, stuff I’ve not heard in a long time, it’s made me smile and relaxed me too. Isn’t it amazing how your mind retains lyrics? I’m even enjoying singing along to some,  that I can definitely still do 🙂

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Poem – This Woman

Posted on by SingleRheum

She stops; this woman, and looks around.
This point, this now, this girl, who’s she? Is she really where she was meant to be?

Never her aim, this winding path, with hills to climb and stones so sharp.
Sometimes she reaches back through dreams, to a place where hopes trump might-have-beens, and a mellow yearning burns awhile, as futile as her tears.

For the past is there and set in stone, the truths of it granite, the dice long thrown.
She knows, this woman, grief plays a part, a gentled pain now faint of spark, long tucked inside a darkling heart.

A different turn, a change in speed, a lighter wind, a stronger steed?
There were gentler ways for her steps to wend, her soul moulded and shaped by much softer rains, but she chose to travel with the storm and the light, and bear proudly the scars of each obstinate fight.

There is no reward for looking behind, her footsteps vanished, the way ahead blind.
She shoulders her burdens, her memories too, she shoulders the aches and the choices once made, and looking briefly about to roads that are paved, she steps without doubt onto stones of the track, the road untravelled, her soul intact.

She steps out; this woman, and looks straight ahead. This point, this now, this girl, who’s she? Forged by her journey, she is all she can be.

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Still Catching the Dreams…

Posted on by SingleRheum

A passing comment on a forum today got me thinking about dreams.  Not the crazy vivid ones I have most times I sleep, or the “I want to marry Jon Bon Jovi” sort (though Jon if you’re reading I’m still open to offers).

I mean the real world dreams we all have, whether it’s a seeing the sunset in Jamaica,  a shopping trip to New York, running a marathon, cycling from John O’groats to Lands End, travelling route 66 or learning to play the piano.  The kind of dreams that stay with us for years, because one day, with hard work, they could happen. 

We don’t give up on those, they’re always there, always possible.  And then they’re not.  Chronic illness, in my case RA, comes along and blasts a big hole in your vague plans.  Between fatigue, pain, disability and depression suddenly taking a shower is hard work, earning power is reduced or removed and you can almost see those dreams vanish into nothing. 

This was the point that was briefly being made, and it’s stuck with me all day just nagging away in the background.  Because… well…. what if?  What if I don’t have to give up on my dreams? What if they were still possible? What if part of accepting my new normal is looking on this as a challenge or a puzzle, finding new ways to slot the pieces together so they fit in a way that suits and empowers me?

OK.. So, what are my dreams? I had to really stop and think.  These things are often vague, ephemeral thoughts that weave their way into our lives but never get pinned down.  I have a few of the standard bucket list things, a hot air balloon ride at dawn (yes, I know, I hate mornings!),  horse riding on a beach in the waves, travelling the Old Silk Road,  revisiting Morocco,  learning to rally drive.   The last one is realistically a no, I’m not sure my joints would take the bone shaking involved! The others, finances depending(!) are all still possible, I may need to make the horse ride brief or be lifted into the balloon basket, but they are definitely doable with support.

What about the deeper dreams,  the hopes I had for me? The one that stands out for me is that I’ve always wanted to write a book,  I’ve scribbled a lot over the years, had various ideas, but kept not having the time.  Well that’s certainly not the case at the moment. Time is one thing I have. However, realistically I would need to pace myself carefully around my fatigue, I can’t sit and type for long periods,  I often can’t concentrate either.  But, given consideration, none of those things are insurmountable. 

I’ve kind of digressed,  I do have a point here which I’m reaching in my rambling way, which is that dreams by their very nature are fluid.  Yes, chronic illness can shove a huge road block in your way, but there are other routes we can take. If your dream is to run a marathon and that’s simply no longer possible,  take a look at what that would have given you.  If it’s the challenge of pushing yourself and your mobility is reduced, look for new achievable challenges, perhaps you can cycle or swim instead and still get that same sense of achievement?

I honestly believe that by standing back and thinking about what we really want, then combining that with our capabilities, we can come up with a more flexible route and still reach our dreams.

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Pain… & Strategic Planning?!

Posted on by SingleRheum

I had my first appointment today with the Pain Management Clinic at the hospital (GP referral).  I had absolutely no idea what to expect, and was a little trepidatious to say the least. 

The letter they sent me gave no clue, just a time for the appointment for an initial information session and a quite long questionnaire.  I have to say for someone with RA pain in both hands having to hand write anything is difficult,  so I did it over a couple of days, slightly cursing the fact they hadn’t emailed it to me, typing or using my touch screen keypad is much less painful.

The questions asked were quite in depth, covering the reasons for the pain,  what it stops you doing, the changes it’s made to your daily life and activities, etc, plus any current medications and whether they worked.  So like a good patient I ploughed my way through and answered honestly, no point doing otherwise!

I almost went in today with my defensive head on, expecting to have to justify my pain levels and the way I measure them, or why I am taking the pain medication that I do (Tramadol & Oramorph). I had assumed it would be a group session (you know what assume does!) so was suprised to be called promptly at 11am into a small office. 

The lady introduced herself as a hospital psychologist, and went on to explain they operate both a 121 and a group support to chronic pain patients, backed by a team including therapists, physiotherapists, occupational therapists and a nurse covering medication.  The service offers support with self management of pain, which I immediately found myself buying into, I am a great believer that as patients we have a responsibility to treat ourselves as kindly and as well as we can, in consultation with medical professionals, and I’m certainly very open to learning how to do that better. 

We talked through my responses to the questionnaire in full, about how my recent diagnosis and symptoms, have affected my life both physically and mentally.  It was a tough conversation in some ways, as well as my physical ability being hugely affected to the extent I am disabled, there is the daily pain that never stops, the loss of income and my home, and my current status as a homeless person, all of which have brought about very natural feelings of frustration, anger, failure and at times the classic, “why me?”. 

But, on the plus side she was wonderfully understanding, drawing out how I deal with this on a day to day basis and telling me I was actually using some good coping strategies already, I hadn’t realised I was even doing that so that was great to hear. I explained to her that one of my biggest frustrations is not being able to “manage” my illness.  Anyone who’s ever worked with me will confirm I am a classic manager,  I tackle issues, look for solutions, I trouble shoot, I strategise! It’s how my head works.  Identify problem, identify solution, make it happen – simple 🙂

That’s when she hooked me – she explained all of these tools can be used to help me manage my pain and try and find a new ‘normal’ that will work for me.  Music to my ears!

She fetched me a Pain Management Plan workbook to take away,  I deliberately haven’t read it yet, I’ll do that tomorrow, but at a glance it’s covering other people’s experience with chronic pain, tools and techniques for managing pain, and space for filling out my own plans to work on moving forwards.

I’ve decided for now to have a couple more sessions with her 121, then access the group therapy later.  She also feels some mindfulness training will suit me, having done a little before I agree and am actually looking forward to that too. 

All in all this appointment was amazingly positive for me, for the first time someone has convinced me I can start getting some control back over this illness, and that’s incredibly hopeful. 

I realise this approach and this kind of support may not be for everyone, I’m detail orientated and I like the idea of looking at the way I do things around my disability and finding alternative and possibly better ways of coping.  I’m  a firm believer in holistic medicine, the mind and the body are not separate entities, and I’m well aware that whilst I cannot remove the pain, changing the way I think about it can and will enable me to manage better day to day. 

So, the start of a new path, a slow one and a long one.  A fellow RA sufferer said to me online very shortly after my diagnosis “this is a marathon not a sprint, you have to settle in for the long haul”, and they are absolutely right.  There is no cure, there is no quick fix,  but I’ve been fortunate to be given this NHS provided opportunity to learn techniques and strategies for living as well as I can, and I intend to grab it with both hands. 

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Cytokines, exciting things!

Posted on by SingleRheum

The lovely Lene Anderson (author of the amazing book Your Life with Rheumatoid Arthritis), shared a link today to an article from The Rheumatologist, entitled “EULAR 2015: The Biology of Fatigue”

EULAR 2015 is the annual congress of the European League Against Rheumatism (EULAR)

My first thought was wow, fatigue has biology? From my own experience and from speaking with other RA patients across 3 continents fatigue seems to be almost the phantom symptom.  We all as patients know it exists, we feel it’s debilitating effects, some of us daily.  But it’s not really talked about, it’s almost like it’s RA’s dirty secret, the unsavoury cousin no one invites to the party. 

Look at diagnostic criteria, posters covering symptoms, medical reports on clinical assessment.  They talk about joint damage, inflammation, morning stiffness, they mention lungs, heart, eyes and blood vessels.  And they might mention feeling ‘tired’. 

The difference between feeling tired and feeling fatigued is enormous.  In  simplistic terms, if you sleep, tiredness is cured.  Fatigue is a thief that steals, hours, days, motivation, energy, and can quite literally leave you unable to move.  It is not affected by sleep, the two have no connection. 

So, back to this article.  Fatigue has a biology! I’ve gotten used over the past few months to reading ‘medicalese’ and I’ve linked to the article in full if you’d like to read it.  But the sentence that has me excited (geek alert!) is this one…

“Roald Omdal, MD, professor of medicine at the University of Bergen in Norway, said studies have shown that there is a biological basis for fatigue, that fatigue is gene regulated and that there may be several pathways that bring about fatigue in patients.”

Oh and this one….

“In my opinion, interleukin 1 beta signaling is the fatigue cytokine,” he said. “There is convincing evidence from animal studies—and also, lately, in humans—that this plays an important role.”

Now I don’t pretend for a minute to understand the science behind this.  I know that cytokines are small proteins that affect the behaviour of cells, and are involved in RA inflammation.  The hows and whys are beyond me,  I’ve never been accused of being a scientific mind!

What I do know is this, that once the cytokine that causes fatigue can be definitively identified, research can continue to the next logical step of trying to find a ‘fix’.  Anything that brings us one step closer to being able to treat what many,  and certainly I, describe as the most debilitating symptom of Rheumatoid Disease is a reason for this girl to smile today!

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