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.

Simplifying Part Two – Vacations 

I’ve always loved to travel, even the word conjures up a wonderful jumble of images in my mind, from fictional journeys I’ve taken such as old fashioned steamer trunks and the ‘Grand Tour’ of Europe (Little Women*), bustling Caravasarai for travellers along the Old Silk Road through Syria, Persia and onwards (see Physician*), as well as times I’ve spent abroad over the years, the scent of the spice markets of Marrakech, the taste of fresh cherries in southern France, the beautiful work of artisans in Cuba, the timeless flavours of mezze in Cyprus, the Fairytale castles and landscapes of Bavaria, the majestic beauty of mountains in Austria, the cobbled streets and squares of Belgium with the obligatory Moules Frites! 

As you may have gathered for me travel is not about finding a good beach, but wandering local streets, finding tiny coffee houses populated by ancient men who seem part of the furniture, stumbling across cosy restaurants with food you remember years later, churches and mosques and town halls with amazing architecture, bustling souks with women in brightly dressed kaftans and djellaba haggling, always haggling. 

Nowadays all of that sounds quite exhausting! So how on earth do those of us with chronic illness and disability and fatigue even contemplate travelling? For me (yes, here’s the theme) it’s about simplifying. And to simplify you need to plan a little. Yes, this may take away a smidge of the spontaneity of previous journeys, but they were taken in days when I didn’t need to know where the nearest toilet was at all times and whether I could park within 20 feet of my destination! 

So, how to simplify travelling? By reducing both physical exertion and stress. I’m going to talk about holiday type travel here, but I’m sure some of these tips could apply to other journeys too. 

  • Simplify the airport. My number one tip is book assistance at the airport. It’s free and it’s the best thing ever, especially if like me you travel alone. Once you get yourself to the meeting point in the airport you can almost stop thinking. You get comfy in a wheelchair and often sail past queues at passport control and check in. I can already hear some of you saying hang on, a wheelchair?! Yes. Gatwick airport – 1.2 miles to North terminal from check in. JFK 0.7 miles. Zurich 1.27 miles. I can’t walk that far, and you really do not want to arrive at your destination in an exhausted and painful heap. Use the wheelchair. Of course if you have your own wheelchair or even mobility scooter the airline will carry these free of charge, just make sure you let them know in advance. 
  • Simplify your meds – yes, it’s a fact of chronic life that like me you’ll probably need a bag just for your meds. If you pack it carefully you’ll have no problem at security. Don’t decant into pill sorters, take them empty and do it when you arrive. Ensure every med has its box or bottle with pharmacy labels, and carry copies of prescriptions or a print out of your repeats list as back up. I’ve had my meds emptied out at security more than once, but I’ve never had them queried. If you’re carrying sharps let the airline know in advance, you may need a letter from your GP. NB – always carry on, never put meds in the hold, we’ve all heard tales of missing luggage…. 
  • Simplify your packing. It’s taken me a while to master this, but actually taking as little as possible is so freeing! Because of my fibro I tend to stick to soft jersey or linen, and I swear to you three pairs of trousers, five tops, a jacket or cardi and a scarf or two and I’m done. One of those tops will be one I can dress up a little if I do end up having an evening out (I’m usually on the bed watching TV by evening these days!). I spent years lugging clothes abroad that came back unworn, and I know I’m not alone. 
  • Simplify your accommodation! How? Check access to your room, and access to what makes your holiday enjoyable before you book. Once you know your booking is for a ground floor room, within 40 metres of the town square/beach and there are four good restaurants/bars nearby you can relax about your arrival & enjoy your stay. 
  • Simplify your decision! What are you really travelling for? Forget everyone else for a minute, what do YOU want out of this holiday? Whether it’s time to meditate daily, swim, lay on the beach every day or learn to paint make that the focus of your booking. If you have children book a holiday with a kids club or crèche facilities, if they spend half a day there while you swim/read in peace it means you have the downtime you need to save spoons for time with them in the afternoon, or vice versa. Remember this is your holiday too. 
  • Simplify your expectations. Probably the hardest lesson I’ve learned but the most important. Be kind to yourself. It’s OK not to see every tourist attraction in the area. It’s OK to have a siesta in the afternoon. It’s OK to have early nights. It’s OK to just sit and have a glass of wine while you watch the sunset. It’s OK to spend a whole morning drinking coffee and reading a good book. It’s even OK to spend a day in bed. (What!! But I’m on holiday, stuff to do, places to see! A day in bed when I’ve paid to be here?!!) Yes, it’s absolutely OK. Think about it. You’re on holiday, a vacation, a rest. If you can’t give yourself permission for a day in bed if you need it when can you? Doing this while I’ve been away in the past couple of years has been essential, I couldn’t have had the up days I enjoyed without listening to my body and taking a day or two to rest. 

I would love to hear any tips you have for simplifying your travel plans. 

The two books mentioned are both ones I’d recommend. A relaxing holiday read maybe?  

*Little Women by Louisa May Alcott 

*Physician by Noah Gordon