Whispering Darkness…

Some of you will be aware I write when I need to process. Never more necessary than this week.

I’m struggling right now, both physically & mentally. This is totally down to our disastrous current government. I make no apologies for being political when those very politics are affecting my physical & mental health.

I received notification in June/July this year that even though I had been previously awarded lifetime DLA (Disability Living Allowance) for my chronic & progressive conditions, due to govt changes to the benefit system – namely the introduction of the new PIP (Personal Independence Payment) benefit – I had to reapply. Yes, reapply.

You’d have thought the sensible thing to do for people with lifetime disability awards would be a simple transfer, but no. Reapply as if you’re a completely new claimant. There was an option to allow them to access your previous assessment records for DLA to support your claim – “if they are still available”. Yes, it appears the DWP may have failed to actually keep records properly. Who’d have guessed.

I want to be clear here before moving onto the effect this process is having on me personally – the only reason the govt have rolled out PIP is to get disabled people off benefits. It’s that simple & that barbaric. A UN report in 2017 “accused the Tories of creating a ‘human catastrophe’ in the UK” which violates disabled people’s human rights, the text below is quoted from The Canary, the full article is available here

The UN are currently carrying out another investigation into UK poverty and the impact the current government has had on this, looking at key areas including these listed below – text again is from The Canary, full article is available here.

I kind of wanted to be clear on this – this is not me as a benefit claimant just being awkward or heaven forbid “ungrateful” – but a widely acknowledged truth. Disabled people are being disadvantaged by this government, the facts prove that. The United Nations knows it.

So, back to to this process. I had to call to apply after receiving the letter which was incredibly difficult for me – anything to do with benefit changes causes me severe anxiety – I was physically shaking when I rang, despite being prepared by Citizens Advice on what to expect so I had the information I needed right in front of me. It took a stomach churning twenty minutes. Just to ask for the form.

Once the form arrives in the post there is a four week deadline for completion. The earliest appointment Citizens Advice had was for almost six weeks away. So again I had to go through the ordeal of phoning, this time to request an extension which thankfully was granted.

I cannot begin to describe the vile process of completing that form, even with a trained & sympathetic advisor. I can’t write for any length of time myself because of the RA in my hands, so they had to complete the form for me. It’s invasive, incredibly personal & embarrassing. Answering questions on what medications you take, their side effects, how often you manage to wash yourself, use the toilet, leave the house, eat, get out of bed, the assistance you need but don’t get, and the intimate details of every symptom of your conditions & disability from bowel movements to insomnia, light sensitivity to Myoclonic Jerks.

The awful thing is on a daily basis you are mostly able to avoid thinking about the vastness & sheer weight of multiple conditions & symptoms alongside chronic unceasing pain, you simply deal hour by hour because that is manageable, mostly. This is like plunging into the abyss with your eyes taped wide open. It’s not an exaggeration to say it’s traumatic.

Every tiny personal detail of your life is discussed & transcribed, ready to be pored over by faceless strangers – without the requisite medical knowledge – but with the power to remove your income & your car & leave you destitute & housebound. Yes, it’s that f*cking huge.

So – my appointment with the lovely & very empathetic lady at Citizens Advice? Three hours. Three grueling & exhausting hours. And I wasn’t done yet.

It took me another two hours at home to go through, copy & annotate twenty-seven separate pieces of medical evidence going back about 18 months. Scan reports, surgical reports, consultants letters, radiography reports, it all went in there. This took me about three days.

So finally it all went into the post. I had a text on the the 8th August to say my form had been received.

I then heard nothing until Saturday 3rd November when a letter dropped through my door. Yes, just over twelve weeks, or 3 months. Every single day since August my anxiety has grown worse. My depression is also pressing at the edges of my consciousness, whispering of hardships & darkness. My GP is fully aware & we’re monitoring my mental health, the frustration is that we know the exact cause & have no power to remove it.

So the last couple of days I’ve basically gone turtle. I’ve retreated inside my shell, alternating between Netflix & reading depending on my ability to concentrate. The minute I stop either my thoughts are immediately back to this planned assessment. I feel dreadful as stress flares everything. Fortunately I have a wonderful friend who has agreed to be with me for the appointment which is incredibly helpful.

My next task which I couldn’t bring myself to do today is to call them & ask why they’ve not taken on board the request on the form from Citizens Advice & myself for a home visit, and see if its possible to change it. Honestly from what I’ve heard I’m not particularly hopeful.

Then I need to prepare, think of this as a job interview but twenty times worse. Its so easy with fatigue, anxiety & brain fog for me to use the wrong words, forget whole symptoms & conflate conditions. It’s basically a quiz about me where I can get the answers wrong much too easily. I’m terrified of this, and not without reason – so many horror stories of poor assessments are a matter of record.

One last note – DWP or whomever, if you’re reading this and thinking even for one second “well if she can write a blog that makes sense she can work” you are stunningly misinformed about what being chronically ill & disabled looks like.

This, as with many of my posts takes hours – but never all at once. Initial thoughts, a few notes, finding links, remembering what the hell I was talking about when I lose thread mid sentence, stopping for sleep or rest, editing, rechecking, a final read through to make sure I haven’t made a compete idiot of myself. It all takes precious time and energy spread out over days, to do something that when I was well I could have rattled off in ten minutes.

This is my reality, please simply believe me.

PS – for anyone who has bought into MSM (Main Stream Media)’s outright fairy tales about benefit fraud & demonisation of claimants – here’s the real deal from the government’s own data. A tiny 1.2% of benefit claims are fraudulent.

Like HMRC, the DWP also estimates fraud and error for its benefit payments. Its most recent estimate shows that overpayments to claimants in 2017/18 were £3.8bn, or 2.1% of its total bill. Of this, 1.2% (£2.1bn) of its £177.5bn budget was claimant fraud. Full article here.

Emotional Eating…

I’ve been thinking today as I sorted out my sewing box (how many buttons?!) and my stationery box (how many pens?!) about the how’s and why’s of my relationship with food, and what lies behind it.

I don’t know anyone, overweight or underweight, who doesn’t have problems with emotional eating, and in some ways I think it’s the hardest thing to step away from. Unlike with heroin or crack or alcohol where one just abstains from the substance to deal with the addiction with food we can’t, we all have to eat to survive.

And these are deeply ingrained behavior patterns melded into our psyche as children then carried through to adulthood where they become a subconscious belief – the belief that certain foods make us ‘feel better’.

What do we do with a crying baby? Feed it. How do we cheer a toddler out of a mood? Food. What do we reward children with when they clear their plates? Sweet food. (two lots of issues there – we are all trained not to ‘waste’ food from an early age so we stop noticing when we’re full). What do we have as treats on special days, holy days, birthdays? Food, food & more food.

It’s no big shocker that we associate food with comfort more than anything else. When we eat that bar of chocolate or packet of biscuits we are unconsciously reaching back through time to our first feeds, when food also meant being held close, safe & loved, with no worries or cares. That’s a really strong pull, and in essence it’s what we’re fighting.

I don’t know what makes the difference between people who have a healthy relationship with food and those who don’t. People who can have two chocolates and put the box away for another time. Maybe it’s nurture, maybe nature. I’m sure the answer would be worth millions!!

But I do know my eating issues started in my early twenties, and I’ve had them ever since. I can look back at times when I was really happy and the weight fell off, and then sometimes when I thought I was happy and the weight was piling back on anyway.

For years I’ve watched furtively as slim people ate chocolate bars or ice cream and thought “well they can have them, why should I go without”. Yes they. They (the slim people) are obviously a race of aliens with incredible willpower. Except no. They simply view food as fuel, enjoyable fuel but without the emotional baggage we attach to our eating.

I don’t know what the answer is, but I do know what it isn’t for me. Diets. Shakes. Low Carb/fat/protein. Intermittent fasting. Atkins. Weight watchers. Banning sugar. Spending three mornings a week at the gym. Yes, I’ve done all of these plus others over the past twenty eight years. And I’ve lost weight. And on it has gone again because I haven’t tackled the cause. My mind.

So for me the change I make now has to be permanent, and yes, if that means I calorie count for the next twenty years so be it. Because I can’t be trusted not to. Interestingly I’m not finding this hard. Difficult yes, but not hard.

I’m rediscovering a love for fruit and salad and veggies cooked well with flavour. I’ve found a wonderful organic granola that has no added sugar or fruit and its gorgeous. I’m remembering to reach for grapes or a carrot or a rice cake if I’m peckish. I’m actually planning meals on the days that I can cook, and enjoying preparing them.

Believe me when I say I could happily ditch this tomorrow, go back to eating mostly crap and put weight back on in a heartbeat. But you know what? I want this more. I don’t want to have to use an extender on plane seat belts. I don’t want to keep looking for the sturdier chairs. I don’t want to keep wearing shapeless tunics because they ‘cover the bumps’. And I don’t want doctors to be less concerned about my symptoms because they look at me & see fat. I want to remove that excuse from their arsenal.

But most of all I want… Leather trousers, 50th birthday 😎👖👢💛

As always comments & opinions are my own and not a substitute for speaking with a medical professional

Dear Newly Diagnosed…

You obviously feel in need of support.
I do remember that feeling – that you are really struggling with the whole idea of having RA – of becoming chronically ill.

So you’ve joined a support group, seen a few posts about surgeries and disability and people trying their third biologic, now you’ve gone from slightly concerned to terrified!

It’s important I think that newbies to #chroniclife are made aware that it tends to be those with more severe symptoms who gravitate towards support groups or twitter, and stick around. It’s important we acknowledge that around 40-60% of those diagnosed with RA and treated early will likely achieve controlled remission with medication. That’s actually pretty good odds. And those people often never feel the need to look for support groups online or to stay around if they do.

So our tribe tends to be those who’ve been a bit battered, often suffering with mental as well as physical issues that ergo cause emotional as well as physical pain. It means sometimes posts and tweets can seem dark or bleak, but it also means we have a fabulous empathy with each other and are able to give outpourings of love and support and prayers whenever they are needed – we’ve been there, and many of us have come out stronger for it.

And that’s a really important thing to know – we do come out the other side. My first year with RA was dreadful, I lost my job, I was made homeless. My depression spiralled. It was a dark time, perhaps not dissimilar to where you may find yourself now, and without my online tribe (not forgetting my wonderful IRL family & friends!) I’d have collapsed. These fabulous, generous strangers kept me putting one foot in front of the other when I couldn’t see the way forward. They held up a light.

It was hard and it was sad and it was painful, I won’t pretend otherwise. Antidepressants helped, my GP helped, psychotherapy helped, group therapy helped, and very gradually my feet found new, firmer ground. On balance now I can honestly say chronic illness has brought more good into my life than bad.

The worst happened and the sun still rose and set. That’s life changing right there. Survival. Some great therapy led me to mindfulness which lead me to meditation and gratitude. Despite being ridiculously ill and in constant pain I am genuinely happier with myself than I’ve ever been in my life.

RA was the brute force needed to make me stop & smell the coffee. I know it touched me for a reason. I live more spiritually and much more slowly, I treasure my friendships, I’m more sympathetic, more patient & more kind. I’m grateful for the smallest things, a warm bed, hot coffee, a good book. I’m no longer impressed by the material, but hearing a bird sing or watching the clouds move can and frequently does fill me with with joy. My path has been irreconcilably altered by RA and I’m the better for it.

Yes I still have dark days. I’m very ill, with RA, ME, Fibro & other conditions. So I have constant pain and take a lot of meds. I’m still on antidepressants and fully expect to be for life, they boost chemicals I need to be me and I’m more than fine with that. But my darker days are just that now – days. In the past they would have been weeks or months, my coping strategies developed and yours will too.

I wanted to share this with you not because you’ll do the same or feel the same – we all walk our own path through this life. But to hopefully reassure you a little that you absolutely will find your way. Chronic illness is not an end but a shift to a new beginning, an altered life does not have to be a lesser one.

My newcomer tips?

  • Get enough rest.
  • Listen to your body, if it hurts, stop.
  • Build your pain toolkit – meds, gels, ice, heat, tens, marijuana, movies, whatever works for you.
  • Let go of worry about what others may think – it really doesn’t matter.
  • Look after you – baths, chocolate, candles, pamper yourself.
  • And always, always remember to be as kind to yourself as you would to others – we are way too hard on ourselves.
  • Practice #selfcare daily

Sending blessings, Namaste 🙏🕉️💙

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

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

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

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

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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