Failure is a State of Mind

Posted on by SingleRheum

I’ve just been scrolling through one of the Rheumatoid Arthritis forums,  and I stopped to very gently comment and support a fellow poster because she felt she was a failure.  Her exact words were “since I’ve failed Humira and Enbrel and methotrexate..”

Of course she isn’t a failure.  It is no more her fault that those drugs didn’t work than it would be the engines fault for not working because the wrong type of fuel was used. 

I then realised that I’d said in my last blog that I felt like I’d failed.  Hmmmm! It’s a fascinating choice of word to use, and I suspect both this lady and I did it completely subconsciously. 

I just checked the Oxford English (my go to for definitions),  and it says “Lack of success”,  “the action or state of not functioning” or “A lack or deficiency of a desirable quality”.  It is clear that none of these apply to us personally, either to her or me.  It could be said that the drugs she has been given failed, that would be fair, but in no way that she had.

In my case I used the term in my last blog, Fighting the Thief that is RA, to describe how I felt I’d failed at losing my home through/to this illness.  A follower very kindly immediately commented that I hadn’t failed, but it took me a little thought to agree.

In very brief terms I started feeling ill last September, obvious symptoms started in November, I was diagnosed in early March and haven’t been well enough to work since the end of March.  This unfortunately meant no income, without income I can’t pay rent.  So what in that makes me think I’ve failed?

I’ve given this some thought today, and, rightly or wrongly, for me I think it comes down to self worth and perception.  I’ve worked hard all my life, I enjoy nice things, I’m in my 40’s and I feel that invisible societal pressure to live a certain way.  To have the house and the job and the car etc.  I’ve certainly identified very clearly with my work persona,  and measured myself against that identity. 

I’m currently signed off sick, so that has been lost to me, albeit hopefully temporarily.  The rest is ‘vanishing’ on Monday when I leave my house for emergency accommodation (and my stuff disappears into storage), of course I feel like a failure.  But on reflection that says far more about my values, and perhaps opens a window I’m not that keen to look through.  I don’t think I’m shallow, and I would certainly never judge anyone I know by income or status symbols, so why am I so hard on myself?

Why are we all so hard on ourselves? I don’t have the answer, perhaps psychology does.  I do know that in general we prop friends up but knock ourselves down, and that’s not helpful or healthy.  So I’ve made a promise to myself as I’ve written this tonight, simply to try to be as kind to myself as I would be to others.  I sincerely hope you feel able to do the same.

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Facing the Thief that is RA

Posted on by SingleRheum

I have avoided writing about this so far because it feels like a failure, in fact the biggest failure of my life.  But I promised myself when I started this blog it would be honest, in the hope that maybe it could help others, so here goes. 

RA has already stolen so much from me in such a short time,  my dexterity, my mobility, my ability to work currently, the pain free existence I took for granted and the energy to get through each day. 

Unfortunately the thief that is RA is this week taking my home. 

Homelessness (there, I said it) has always been a distant thing that happens to other people.  I donate now and again and I empathise, but it’s not been something that belonged in my world, it could certainly never happen to me.  Oh the arrogance.

I was very fortunate, I grew up in a middle class home, my parents instilled a strong work ethic, and I’ve been employed all of my adult life.  I’ve paid my way,  and over the last few years have enjoyed a good standard of living as I have been successful in my career. I lived from month to month, I wasn’t short, if I wanted things I bought them (within reason – cappuccino, meals out, new lipstick, manicures). Like many people it never occurred to me this could suddenly all fall down.  I had no savings, why would I? I’m single, no family to support, no children to leave things to, life’s too short, enjoy it while you’ve got it right?

Then I started feeling ill.  At first non specific malaise, then full blown RA.  Fast forward six months and I have to admit I just cannot work.  Between the chronic fatigue and the joint pain I was not capable of doing my job and being effective.  And that’s when it all fell down.  Going from a good salary to statutory sick pay overnight is financially devastating.  And I had no cushion. 

One month I could meet my outgoings, the next I couldn’t, very basic math. I’ve accessed benefits, but they unsurprisingly don’t cover the luxury of me as a single person living in a detached 3 bedroom bungalow. A combination of circumstance and timing have led to me having to be out of my rental by 14th June.  It’s really hit me today, I have one week left in my home.

I’ve been trying to source alternative smaller accommodation for weeks, it seems I’ve come up against a shortfall locally in the letting market.  Add to that my need for an apartment with either ground floor or a lift as I am now on crutches because of my hip and it gets difficult.  Throw in my two cats, even more so. 

I have turned down somewhere this week because it was first floor and no pets.  I though seriously about taking it, beggars can’t be choosers right? But then I had a meltdown.  There is just no way the RA thief is stealing my cats too. 

I have spent the last two months at home ill, this has exacerbated my depression so badly additional meds have been added in, and thankfully they are helping.  But my cats are my company, my family and my therapy.  We three are a unit.  For my mental health they do untold good, even the thought of losing them causes immediate anxiety. 

So I go into this last week in my house with a large dose of stress and trepidation.  I literally do not know where I will be sleeping in a weeks time.  But I do know wherever it is, my fur babies will be right there with me.

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What do you need to know?

Posted on by SingleRheum

Over the course of Arthritis Awareness Month I’ve read a number of really good lists, 10 things I wish I knew about RA, 15 things you shouldn’t do with RA etc. And I got to thinking today, if I could send one out to everyone I know, what would my list contain? What would I want those who know me and love me to know about me & my RA?

I don’t pretend or claim to speak for anyone else with RA or any other chronic illness, this is very much my list based on my experience. That doesn’t mean of course it’s not shared! What would you add?

1. I didn’t choose this, it’s happening to me.  I will do everything I can in conjunction with my medical team to live as well as I can.  But living with this is my only option, there is no cure. 

2. Talking of cures… Whilst I know your intentions are really good, please keep your suggestions regarding treatments to yourself.  Believe me I have researched this to hell and back,  it’s how I deal with stuff.  I need to know it inside out and plan my attack.  And if I, my rheumatologist, my GP,  my OT and my HCA haven’t discussed it, it’s because it’s NOT beneficial.  So please keep your wheat free/organic/juice/faith healing stuff to yourself.  I ask this with love, thank you very kindly.

3. I am not lazy.  I am not ‘giving in’.  I find the fatigue the most debilitating aspect of RA.  I’m either asleep, trying to sleep and failing or wanting to sleep, it just never ends.  I can sleep for 2 hours or 20, I feel no better.  If I’m lucky I get 2 to 5 hours on a good day when I can be up and about,  but slowly.  I have at least two days a week when I cannot get up because I am simply too exhausted.  It’s a physical weight that never leaves me. 
It’s not a case of mind over matter, or giving in or pushing through, I literally cannot stand. 
All the usual bloods have been run, tests done etc.  Both my GP and my rheumy agree it a known and classic symptom of RA, and the hope is if they ever get my damned disease under control it will lessen.  Maybe. 
I feel like I’m losing a chunk of my life to this at the moment, if I want to do anything it’s planned between 1pm and 5pm which are generally my best hours. 
I’ve even had to cancel doctors appts last minute because I can wake up in a morning and know immediately my tank is empty, I’m going nowhere. 

4. I am in pain every minute of every day.  There is no let up, no respite.  Whether you see me huddled on my sofa at home or out with friends laughing, I am in pain.  Doctors like a 1 to 10 scale.  It’s not ideal but to give you an idea 1 would be a graze, maybe 3 a sprained ankle,  5 a small bone breaking, 7 a bad tooth access, 10 involves vomiting and/or passing out. We tend not to use 10. I am never below a 4. I am daily up to a 7. I hit 9 once last week for a couple of hours.  Don’t ever mistake me smiling for being pain free. 

5. I need your company! The easiest thing in the world for me to do is stay at home.  I have meds, heating pads, comfy cushions etc.  I know going out hurts.  Some days I can manage it and others I just can’t, so I’m not very reliable, but please keep asking! I want to come, I want to see you! Feel free to drop in to me unannounced.  I don’t care if you wake me, conversation and laughter make me feel far better than sleep does.  You may just have to put up with me looking like the bride of frankenstein but I’m worth it!

6. I have reached out online and found some of the best support in the world.  You have to be sensible, you have to be selective and you need to avoid groups where negativity thrives, but there are some amazing fellow patients out there, and boy do they know stuff! I’ve learnt way more from my online RA family than from any medical professional.  I am in regular contact with lovely people who are paid to advocate for RA, I’m in touch with writers who have written fabulous RA books and blogs and I love them to pieces for touching my life. The Internet is an amazing thing. 

7. Particularly at the moment as I am still coming to terms with my diagnosis I feel angry.  I have why me moments.  Hell, I have why me days.  I feel robbed of things I have always taken for granted, like energy and the ability to earn a living.  Or cutting up my own dinner.  Simple things that we think so little of, yet the impact they have on our lives is huge.  I have accepted that acceptance will take time.  It’s OK to be angry at this disease, as long as I’m not angry at me.  Back to point 1, I didn’t choose this. 

8. Depression and chronic illness pretty much go hand in hand for over 35% of patients.  It’s hardly surprising, a chronic illness diagnosis pretty much sucks.  There may be better days, but there is no cure.  I have support with this too.

9. I live daily with a bubbling fear in the background about the future.  We know RA increases morbidity.  We know RA can shorten lives.  RA, and the meds that go along with treating it all bring their own games to the party.  Baldness, moodiness, gaining weight,  nausea, dry skin and lymphoma anyone? Or shall we just not and wait for the wheelchair? These are the decisions every RA patient makes every time we start a new med.  The next one I’ve been offered increases the lymphoma risk and adds in the chance of retinal and corneal changes affecting vision.  It’s that or guaranteed continued joint damage.  I will generally err on the side of taking the med, weighing the odds and hoping for it to work and for the the side effects to be rare and small.  But they are there in the back of my mind all the same. 

10. Lastly but not least, if you ask how I’m doing make sure you mean it.  I don’t mean the usual “Hi, how are you?” if we pass in the street, I’m perfectly OK with answering “surviving thanks” and moving on.  Alternatively I don’t mind if you don’t ask, the last thing I want is to become a complete bore on cytokines and the latest biologics . 
But if we sit down together and you ask me, I will tell you, in detail.  Just be prepared 🙂

Bonus 11. Please don’t take this as a doom and gloom list, it certainly isn’t meant that way.  My rheumatologist could find the right drug combination for me at any time, there are a number of different treatments to try, and I will hopefully get my energy and mobility back to something approaching normal.  I still have my amazing family and friends, and even on my worst days I would rather be alive with all the potential that offers for joy and love and light and enjoyment in the smallest of moments. I still honestly feel am blessed. 

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Poem – Count

Posted on by SingleRheum

When the pain is so bad and you’re wanting to die, count the good stuff.

When your heartbeat betrays you by beating on regardless, when your breath keeps on coming in between sobs of pain, count the good stuff.

When the view is so bleak and the clouds are so black, when the rain and the cold and the pain knock you down, when you feel like a long distant shore may be home, because being pain free would beat being alone, count the good stuff.

When the tablets are calling and sleep is your friend, count the good stuff.

When the night is too long and the days never ending, when the bottle’s a friend and it doesn’t judge. When the bitter black anger screams this isn’t fair, this isn’t my life, I didn’t chose here. Count the good stuff.

In the worst of your pain you’re never truly alone, that’s the good stuff.

When you’re angry and wanting to scream at the day, when your damned limbs betray you and get in your way, when the pain is a physical beast that you fight, that tears it’s way inside your head deep at night, it’s the love that clings on and gives strength to your fight – that’s the good stuff.

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The Black Dog & RA

Posted on by SingleRheum

Depression. Even the word is dark.  For me it conjours up images of rain and grey skies, stormy seas and windswept moorlands, barren landscapes with stunted trees. 

If only depression was that simple, had that Heathcliffian black and white glamour.  In reality it’s days of deliberate isolation, it’s curling up because you want the world to go away.  It’s knowing if one more person asks how you are you’re going to start screaming and never stop  so it’s better to turn off the phone. 

There are no definitive numbers available, but it’s thought that around 30% of people with RA suffer from depression.  Cause and effect? Who knows.  There is a new school of thought suggesting inflammation may be linked with depression, it’s certainly linked to RA. 

It’s pretty obvious that combining a life changing diagnosis of RA with days of fatigue and constant pain are a trigger for low mood.  Then you hit the old catch 22, studies have shown that people suffering from depression feel pain more.  And so it goes round. 

Sometimes the cause is irrelevant, the why is unimportant.  It’s the living with that we need to focus on.  ‘Why’ will drive you mad.  Those of us with chronic illness do not need an extra why. 

Writing about depression is hard.  I find writing about my RA fairly easy, it’s almost factual, it’s symptoms and pain and drugs and impacts… Whilst obviously personal it doesn’t feel revealing.

Depression feels more like I’m opening a window instead of talking about the facade of the house.

I wanted to touch on this because it’s been a difficult road for me the past few weeks, yet I’ve never been alone.  Thanks to some amazing people I’ve met online, that I now think of as my RA family, we have shared. 

We have shared in the small hours when the pain is visceral and all encompassing.

We have shared the lows of losing activities, friends, relationships and whole careers to this damned disease. 

We have shared the need to sometimes tune out of the world for a time, because one more thing that demands energy will just be too much. 

I’m taking anti depressants, my GP is very supportive.  Nearly every RA sufferer I’ve gotten to know well online is on them too.  I think they are a necessary and vital part of our support system, we have to look at our health holistically, we are in this for the long haul.  Most importantly we should not be ashamed.

I think it’s starting to be recognised by the medical profession, my rheumatologist has a direct referral link to a psychologist to help people deal with diagnosis,  I was offered this last week and accepted with open arms, I see this support as being as important as any other they offer me. 

To anyone who stumbles across this post who even thinks they may be depressed, please reach out.  GP, rheumatologist, nurse, samaritans – there is always someone there, and thankfully these days the stigma surrounding mental illness has diminished dramatically – to the extent I am not ashamed to say I suffer with depression. 

If you’ve not come across the black dog from the WHO on you tube I’ve posted a link here, it’s a useful way of explaining how depression feels. 

Ask & you will receive?!

Posted on by SingleRheum

I may have mentioned before I’m ridiculously independent, sometimes almost stubbornly so.  It would suprise those who don’t know me very well to know that I’m am introvert, because I am perfectly capable of mixing with people I know and enjoying it.

However it has to be balanced with time on my own.  Quite a lot of it.  Even as a child I would distance myself,  finding a quiet corner with a book for cover and taking time to just be.  I’m genuinely happy with my own company, and I feel sympathy for people who aren’t, I can’t imagine always feeling a need to be surrounded by others. 

However this does not mean I don’t enjoy company, and I’m lucky to have a very special and varied group of close girlfriends, and a wider but just as lovely group of social friends. 

I have found myself in the position very recently of starting to need to ask for help, and boy does that grate! But I simply cannot pretend any longer to myself that I can do stuff – I can’t!

To my immense delight and true gratitude I have found when I ask people come through.  They really do. 

A call out on Facebook this week resulted in an old friend I hadn’t seen in 7 or 8 years dropping round within 2 hours to shift a load of boxes for me.  I paid him with a hug.  Seriously, how simply amazing is that?

I have also had boxes dropped off and meals brought round, and I know when I move house in four weeks the help I need will be there.  If there’s one thing RA has done for me in the last few weeks it’s made me truly appreciate the people around me, my support network, my friends.

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Out of Sorts, Out of Spoons

Posted on by SingleRheum

I don’t know where to start this evening, I just feel a need to write. A lovely old fashioned expression comes to mind, “I’m feeling out of sorts”.  It just seems to fit.  I feel restless and fidgety and fed up and exhausted all at once.  Plus it’s 3am.  3am is always introspective time, ask anyone who doesn’t sleep well!

If I lay it out the last two months look like this – Rheumatoid Disease diagnosis, chemotherapy drugs & steroids, chronic fatigue, pain & inflammation, painsomnia,  too ill to work, no income, depression & anxiety recurring.  Add in homeless in 5 weeks and that about covers it. 

I guess if there’s a time in my life to feel out of sorts now is it.  The biggest frustration is I’m a fighter, always have been, I fix things.  And I just don’t have the energy.  I spent yesterday packing up boxes ready to move at a very slow and steady pace.  Then I lost 80% of today to sleep because I was so exhausted.  That’s what this does,  and it’s the hardest part of this illness for me to accept. 

I totally understand the spoon theory, I have a limited amount of energy per day, and once I use it it’s gone.  Period.  If I push myself I steal spoons from the next day. 

I’m just finding it really difficult to accept how low my daily ration of spoons is, and how quickly they become used.  I packed 7 boxes of books (yes I have a lot, no I can’t get rid of them!).  That would have been an hours work last time I moved, instead it took me 5 hours with breaks.  And it seems that was still too much. 

I commented as part of a discussion recently that the existing spoon theory felt right to me, but the energy used for tasks felt wrong,  for example a days work as 3 spoons and prepping a meal as 2 spoons – this doesn’t equate for me at all.  Someone suggested I write up my own spoon chart, perhaps I should make that my task for tomorrow.  Along with maybe 3 boxes of packing!

I think more importantly tomorrow I need to use some time to work out three things.  What needs doing, what I can realistically do by myself and what I will need help with.  I have to start accepting I can’t do it on my own, and that means asking for help, bit of an anathema to me!

That more than anything else is probably behind my out of sorts moment, I worry that if I ask too much I will be a nuisance and eventually a burden.  People say “if you need help call me” but do they mean shifting boxes of books from my lounge to my garage? I guess there’s only one way to find out…….

If by any chance you’ve not read the Spoon Theory, the link is below:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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The Tramadol Question

Posted on by SingleRheum

Hurt Blogger asked a question of her Facebook readers today regarding helping doctors to improve their understanding of patients experiencing chronic pain and why patients take opioid relief for chronic pain. 

It did cross my mind that only someone who’s never really needed pain relief could ask the question why!

However (and despite not being in America where things are very different) it is a very relevant question, how to explain it to those who simply don’t have the same reference points?

I have chronic pain from RA.  Because of this and what I’ve learnt over the past few months from fellow sufferers in the US I thank heaven I live in a country where I’m not treated as an addict for legitimately requiring effective pain relief to help me function.  I will state here very clearly I feel that not having access to pain medication seems to be a common reality in the US and one that to me seems totally barbaric. 

Until you’ve lived with chronic pain week  in week out you can have no concept of how physically and psychologically wearing it is. Just how damn tired it makes you. How much you begin to resent your own body, the one thing you can’t run away from. 

Pain that would send a ‘normal’ person to the ER becomes your daily baseline. Your definition of pain changes into something at once more tangible yet harder to explain. Pain becomes your constant companion, your nemesis and your whole reality.  It just is. 

Contrary to what most believe you become more careful about taking pain relief, not less, because of the constant concern that regular use means your body will build up a tolerance and at some point the meds you so desperately need will cease to function.

You wait until your pain becomes ‘really painful’ before reaching for your medication.  You ration your own tablets so only on really bad days you actually take the maximum dose.  You  set yourself mini targets to get through before taking your meds, such as “I’ll just finish the shopping before I take the tablets” in spite of the fact that you’re in bloody agony. 

I have run this past my GP, and she tells me to be kinder to myself, take the tablets, it’s what they’re there for! And part of me knows she’s right, yet still that fear of tolerance lingers, so I wait. 

I am in the wonderful position though, thanks to our NHS, that I can simply ask my GP for a prescription for Tramadol and it’s written.  I suppose if was I using too quickly or something there would be questions, but my GP knows me and knows that I need them.  And for that I am indescribably grateful. 

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The Loss of Me

Posted on by SingleRheum

The weather is matching my mood this morning.  It’s dark and raining heavily and the wind is howling.  Much like inside my head today.

I occasionally get melancholic, it doesn’t last for long but it was here to greet me when I woke up this morning and it will probably stick around for the day.

I just feel a little overwhelmed.  I know this will pass, that it’s actually part of my mental process, I sometimes deal with things by diving into the sadness then finding the positives as my way out.

I know this has been brought on by RA, and the impact it’s currently having on my life.  It’s fair to say the last time I went through this much of a life change I was getting divorced.  And I wanted that!

What makes this harder is that I’m not feeling in control, RA is.  That’s very hard for me.  In simple terms RA impacts my health; impacts my ability to work; impacts my finances; impacts my accommodation; etc, you get the the picture.

I am currently under notice on my rental home, that makes this very real.  But it’s not about bricks and mortar, it’s about loss and grieving.  It’s very likely RA will impact on the rest of my life, as an independent female that grates a lot.

It has already taken my previous pain free existence, my social life, my enjoyment of silly alcoholic drinks on occasion, smoking (not a bad thing),  my gym membership, my working routine, my enjoyment in driving, and my enjoyment in cooking.  It’s also taken away my ability to employ a cleaner which frankly is a disaster!

Will I overcome these losses? Of course.  I will learn to find alternative things to fill my life, learn hacks to make things like cooking easier, learn to turn the losses into positives and make that climb back to ‘normal’.

But today, today I’m grieving and I’m ok with that.

The Need For Empathy

Posted on by SingleRheum

I was going to write today about decisions, and how RA affects them, but my mind is stuck on an ‘incident’ from this weekend, so this decision has been made for me by RA! I will return to this theme….

I’m starting to feel that maybe I annoyed a higher power this week, perhaps I should sacrifice a small fish or something!

I had a real scare Saturday morning.  It was methotrexate hangover day so I am now used used to feeling somewhat rubbish, but just before 10am I had what I can only describe as a really bad ‘turn’, and thought I was going to lose consciousness.  I actually thought for a moment this is it.  Out of nowhere I was suddenly cold, my stomach was churning,  I was covered in sweat, my head was spinning and both arms were tingling, I really thought I was going to land on the floor.  I lay flat on my back for about half an hour before I felt able to risk sitting up.  Another half hour and I felt back to ‘normal’, whatever that is!

I phoned our NHS helpline whilst I was lying prone, and after advising what had happened they said because of meds I’m on and recent history they wanted a doc to check me over.  I was relieved!

I then tried calling round friends for a lift,  it’s a bank holiday weekend so no one was here –  cue choruses of “Sorry, I’m in…….. Portsmouth/Cornwall/getting a wax”, you probably couldn’t make it up 🙂

I decided I was steady enough to drive myself by this point.  The duty doctor at the local hospital checked my BP, pulse, temperature etc and everything looked good. He in essence said it sounds like I nearly fainted, and it might be the meds but then again we may never know why!?!
If it happens again I’m to lay down immediately to help blood flow to the upper body, and he said to tell my rheumy so she can make a note of it. 

And that was it, notes recorded, case closed.

Except it wasn’t for me.  What for the doc was almost dismissed as a near faint actually frightened the life out of me.  For a moment there it is not an exaggeration to say it crossed my mind I was dying.  OK, in the cold light of day it seems somewhat ridiculous, but it was how I felt at the time.

Does RA make me more aware of my mortality? Yes, without a doubt.  It’s very difficult not to be when you combine the impact of the disease itself with the side effects of the medication used to treat it, statistically I am likely to die younger than a person without RA, that’s not being gloomy, it’s just the truth. 

However, I suspect anyone going through the experience I had would have been terrified, I have never felt that… Odd. 

What I would have liked would have been a little more reassurance from the doctor before I left . Telling me we don’t know what caused this or if it will happen again may be honest, and I want that, but it’s not reassuring! Just a touch of empathy and a smidge of caring would have gone a long way.

I know I have said this before.  I will very likely say it again and again.  And I don’t think that makes me a demanding patient, it makes me human.