Breaking up with my Rheumy

I cannot begin to describe how angry I was yesterday.  I feel completely ignored and abandoned by my rheumy.  To cut a long and very unsettling appointment short, she basically told me my joint pain isn’t RA any more because that’s “under control”.  I must be having “phantom pain”.  Yep, those were her exact words. 

When I dared to say I wasn’t happy with that her response was “well what do you want me to do?”. 

Of course now I’m not in the moment I can think of a million things I want her to do.  I want her to listen to my symptoms instead of staring at her file.  I want her to accept that the fact the Depo-medrone shot didn’t give me any relief this time doesn’t mean I’m not suffering from joint pain and inflammation, it doesn’t work for everyone! I want her to actually make eye contact. I want her to care how I feel. 

I want to know why she’s only offered me mono-therapy when NICE guidelines dictate combination therapy.  I want her to realise that just because my hands don’t look inflamed today doesn’t mean they haven’t been and that they won’t tomorrow.  I want her to know that I cannot walk or eat or sleep without pain, and that the fatigue is constantly dragging me under.

But most of all I want her as a medical professional to show some f*cking empathy.  I ended up in floods of tears because of her manner and she took that as a chance to check her mobile phone!!! (I’m not exaggerating).

She was brusque, dismissive,  and frankly rude.  I have never met such a cold, unfeeling inhuman response from a medical practitioner in my life, and I will never set foot back in her office. 

The nurse could see how upset I was when I left and she took me to one side and admitted Dr X can be “very clinical”, and advised that my best next step was to see my GP and get a new referral. 

I have had a long think and I will be writing a letter of complaint to the hospital, detailing the full appointment and how it made me feel.  I will also be requesting a new referral from my GP. 

I feel incredibly let down.  I have tried to tell Dr X at every one of our appointments that my symptoms are not easing, but apparently they are irrelevant. 

I am just praying that my next rheumatologist is a human being.  Not much to ask huh?

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Living in Limbo

I am feeling a little introspective tonight,  so much of my life seems to be in-between things at the moment, it’s almost as if I have been put on pause, and I have no control over when the play button is next pressed. 

It applies to my health, I have been on methotrexate (chemotherapy) for over three months now, and prednisone (steroid) for over two, and yet I honestly and unfortunately feel no improvement, if anything things are worse.  My hands are wrists have been a little less painful, but only as long as I wear my splints.  My hip is now in constant high level pain, which increases the minute I even walk slowly,  meaning I have to use the crutches I bought to get anywhere,  and the range of movement in that joint is reduced by around 50%. My shoulders ache and it feels as if the bones are rubbing against each other if I move or try to lift anything.  I see my rheumatologist on Tuesday, it seems the plan is to add in plaquenil (hydroxychloriquine) alongside the other meds.  This too takes up to 3 months to have an effect, so more waiting. 

My job is in limbo.  Alongside the pain and mobility is the ever present and debilitating fatigue, which means unless/until the medication change works I am unable to return to my job, support my team, and earn a salary. 

And lastly of course this applies to my accommodation.  I am currently in a “bedsit” as an emergency stop gap until a suitable private let or council property comes up for me & my cats.

I suppose with all of that it’s natural for me to feel unsettled, I  checked the definition of limbo, and being fascinated by language was also interested in the etymology:

1. uncertain period of awaiting a decision or resolution; an intermediate state or condition.
2. Late Middle English: from the medieval Latin phrase in limbo, from limbus ‘hem, border, limbo’.

It certainly has the meaning I want to convey, the uncertainty and waiting feel very real.  But I actually took comfort from the etymological origin, namely the word ‘border’.

Waiting and uncertainty seem uncontrollable and make me feel somewhat anxious, as we often all do through periods of change. However being at the border seems different, somehow more exciting.  It suggests new horizons and journeys to come, a future that has yet to be written and so by its very nature is filled with possibility.  I can almost feel the horse beneath me as I ride for the border, grinning into the wind!

So be aware limbo, I do not intend to inhabit you for long! Now where did I put my riding boots…..

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Failure is a State of Mind

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

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?

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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