Tag Archives: disabled

The Cleaner

It may surprise many of you to learn that despite my current financial woes, I continue to employ the services of a cleaner. The cleaner comes fortnightly, and her services are paid for out of my disability living allowance. It is a necessary extravagance and it is an extravagance that I look forward to and loathe in equal measure.

My excitement at having a clean house at the end of a three hour visit is obvious. The awkwardness that I encounter for the duration of that three hour visit is almost enough to get me on my hands and knees attempting to dust the skirting boards. Almost, I cannot get on my hands and knees to dust the skirting boards. There has been an empty bottle of water on the floor in my kitchen for two days, which I have been unable to pick up. I really hope she spots it today. Imagine what would happen to me if I partook in continuous exercise below the waist. Imagine indeed… At best, I would be a moaning minny. At worst, I would be on the Oramorph demanding another X-ray.

Let us face it, I also have a strange middle class, but on benefits, guilt of paying somebody to come and do my dirty work, whilst I lie on my sofa watching TV. I am lying on the sofa as I type this whilst the cleaner cleans. She’s two metres away from me making a vigorous scrubbing sound by the kitchen sink as I snuggle into a cushion tapping into my iPhone. I should really move into my bedroom now, but my back hurts, so I am multitasking, working up the courage to stand. She does not know why I am on the sofa snuggling into a cushion. What must she think of me?

A fortnight ago I made a point of taking my medication in front of her, and left a few boxes of drugs out in my room, so she could guess there was more to me and my story than a fat, lazy and inept housewife. That is what having a cleaner makes me feel like, apart from the housewife part. I am no a housewife, as the rotten vegetables in the bottom of the fridge are a testament to.

There are days when I would love nothing more than to be able to clean my own flat. I am in no way exaggerating. I am not saying I enjoy the act of cleaning, I would just like to be able to do it. For well over a month I have needed to adjust the valence sheet on my bed, it is a task I yet to complete because it involves lifting my mattress and I struggle to lift up my Le Creuset. Consequently, I feel like my bedroom resembles a squat with it’s exposed divan and collection of syringes.

Life is tough. Real tough.

My cleaner does not know that I get up early before her visits to make sure things are as tidy as I can make them, that the bedding is clean and dry and the dishes are put away, nor does she know that these activities tire me. She does not know that I do a disproportionate amount of dishes in my flat to make up for the fact that I cannot empty the kitchen bin.

Nobody tells you that this is a side effect of myeloma; uselessness.

I do feel quite pointless right now. Thank goodness I know that I make the mess and dirt in the first, otherwise I would be lying here questioning my very existence.

I just want to get under a blanket and snooze. Goodness knows how I am going to manage this in a fortnight’s time when I am crashing on my steroids and unable to get out of bed. The experience would be so much worse if I am in my pyjamas. There is nowhere to hide.

What is the etiquette when nature calls when it does not call that often? Heavens above.

On the plus side, for all the awkward and critical feelings I have right now, I know that in an hour’s time, my bed will be changed, my flat will be clean and there will be a lingering smell of bleach.

Before that happens, I have to get over the embarrassing issue of payment. I believe some people would refer to my concerns as a ‘first world problem’. My riposte would be, ‘myeloma’.

EJB x

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Planes, Trains and Automobiles

Sometime ago, I got the number 30 bus from Hackney Town Hall to the stop nearest to my flat, and as I stepped onto the curb on the road they call Ball, I remember how elated I felt, because finally, after months of Mamma Jones driving me places, taxis and the Patient Transport Service, I had regained some of the independence I lost with myeloma. Many months have passed, over a year’s worth in fact, since that happy time, and I can now without any hesitation that I no longer feel that way when indecently travel. The novelty has well and truly warn off. The adrenaline I felt that day has long been superseded by apprehension. Apprehensive and loathing to be precise.

Now, with the PTS a distant memory, any travel I undertake no longer feels a matter of routine as it should. Travel is an effort. It is an effort for a number of reasons, not least because I have become a lazy bum who loathes strangers, particularly the sort of stranger who does not know what a ‘Priority Seat’ means. It is a bummer, especially now I am getting out and about and attempting to enjoy #londonlife.

I fear the unknown with travel. I fear what will happen if I get tired whilst I am doing it, I fear people bashing me and not letting me sit down, I fear that I cannot always be independent when I am doing it, I fear that my face will not be able to disguise how uncomfortable some seats are for me, I fear falling over and I fear what will happen if my mode of public transport breaking down. These fears go through my head every time I travel and thus it is the reason why my current, preferred and used mode of transport is a black cab. Trust me, taxis are an expensive way to travel, but it saves my precious energy from worrying about being forced into delivering my much mentally rehearsed, vitriolic speech to people who fail to surrender the priority seat when it is needed. The speech by the way is awesome, designed to make the recipient go home and flush their head down their toilet with their mouth open. Sometimes, I admit, it can go too far and include a certain word that is not ladylike and I am working on that. Ignorant norfolkers.

I have had the time to dwell over my ability to travel and I have come up with certain rules to reduce my fear and manage my hatred of humankind and they are as follows:

🚌 Do not travel during rush hour
🚌 Do not leave the flat without my stick
🚌 Do not get on a bus with any form of luggage
🚌 Never go to the top deck of a bus, because you cannot, and on the rare occasions you have done it, you have paid for it instantly and then well into the following day
🚌 Never stand when a vehicle is in motion
🚌 Prior to travel, if concentration is proving impossible and the bagS below the eye have turned a deeper shade of purple, throw money at the problem
🚌 Avoid the aisle seat, as turning corners can really be treacherous when you are sitting next to somebody equally as large as you are
🚌 Always be polite to those under the employment of the travel company, always, and if this includes saying ‘hello’ and ‘thank you’ to the bus driver then so be it, it could lead to a free upgrade
🚌 If disaster strikes, ring somebody and talk incredibly loudly about the fact you have myeloma which is a cancer with no cure

Some of these rules are easier to follow than others, and it is on the bus where I find myself becoming a rebel. Not a rebel as such, because in no way, is it enjoyable.

In my mind, buses are the most dangerous and troublesome form of transport and nothing TFL can tell me will convince me otherwise. Buses are dangerous for many reasons, they were dangerous before I knew they were dangerous. If I knew what I know now, in early August 2012, I would never have stood up on a bus as it was breaking and thus I would not have ended up clutching a lamppost on Shaftesbury Avenue crying and too shy to ask the policeman walking past me to call an ambulance. Now, being the know it all I have become, I resist the temptation to stand up whilst a bus is in motion as noted above. Bus drivers, unfortunately, are not privy to my rules, and they frequently drive their big red vehicles before I am safely in my seat. I find this most inconsiderate. At least I have now worked up the courage to tell the person next to me that I will not stand up to let them out until the bus has come to a complete stop; it is always met with confusion. I do not get on with luggage at all because I am not agile and any lifting has to be saved for the train, in the event that I can find nobody to assist me or if the train is busy. That is also a consideration I have and one I faces and flailed today.

My main issue however is with the public. On the buses (and they could be getting a bad reputation because I use them the most), on the train and on the tube… My impression, which of course is skewed, is that people ignore those with a disability, unless you have a visibility disability or a blue rinse. I was once asked to get out of my non-priority seat by a man in front of me in a priority seat to allow an older lady sans stick to sit. I said no. On another occasion, I walked into a bus outside UCLH with a bald head and a large bag saying pharmacy, and asked for a seat and nobody got up. I asked again and nobody got up. More generally I am encountered by competing eyes looking at other like minded seated people, wishing that they win in the competition of whose manners kick in last. It is a headache and one that I fret over again and again. Two years ago, I wager I was one of them. Actually, I was not because I was a top deck sort of gal.

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Sod that, give me a badge

I said once that my life is full of new challenges now, and this my friends is one of the greatest practical ones I have facing me, and it is one that I should face everyday but sometimes, the worry and effort get the the better of me. Home is safe. Taxis are comfortable.

There is one mode of transport of which I would not complain about (apart from pain from sitting and sitting leg room) and for that, I wait with breath that is baited. Seriously though, can somebody please just put me on a plane.

✈️

EJB x

P.S. Some may call this attention seeking. I call it preservation.

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Bureaucracy – An Update

Some time ago, I attempted to explain the form filling nightmare that is the British benefits system. To be fair, I expected to fill out forms, just not as many as I did, nor did I expect to have to prove that I was not a Big Fat Liar. Three months on, however, I am in exactly the same situation I was in before I spent a considerable amount of my time writing my name and national insurance number over and over again.

If one thought that as policy makers, governments worked at a snails pace, it appears they work at a similar speed in all other areas under their remit. I am generalising here, incorrectly of course, for our Government is great, I am only talking about the Department of Work and Pensions (DWP), and then I am not even really talking about the DWP, for they have passed my claim on to a contracted out company for assessment. My claim has been under their assessment for 92 days and they are yet to have looked at it. Let this be a lesson to you all, contracting out services works!

I have applied for something called Personal Independence Payment, which replaced the Disability Living Allowance. I am well aware that I do not need the full payment this benefit can offer. I do however, find that there are certain things that cost more money, now I’m a a disabled. Travelling costs more money and it is more difficult than it was before. I get more buses because I cannot walk as far, I even venture on the tube now, even more occasionally than that, is the luxury of a taxi because I get too tired to move and my back feels like it is going to snap; these may sound like small things to you, but they cause me no end of headaches. In my flat, I cannot properly clean and I cannot carry my groceries. I attempted the Hoover yesterday, and let me tell you, today, I very much ache, despite my double dosing last night. There are small adaptations to be sure, but adaptions that cost me money that I do not have, or ruin my few good hours a day with unnecessary pain.

It is not just your money I am after. I really and truly want the government to recognise me as ‘disabled’. It would well and truly make my disabled life much easier, if I were qualify for the national concessions. It would make my bus journey safer and it would give me more energy when I am being driven. It would mean that I would not always have to say why I am disabled.

I have been waiting for the outcome of my PIP claim, before I pursue local options, as it means that I would have to jump through less hoops.

I am becoming doubtful, that I will ever receive extra support. I mean, I get up and go to work, so why do I deserve any help?

I chased my claim last week, not by actually running after it, but by picking up the telephone and calling the DWP. After fifteen minutes, I was told that my claim had been received (they do not send acknowledgments or holding letters), and it had been forwarded to ATOS to process. It was forwarded to ATOS on the 26 September. Helpfully, I was told that this was a long time ago and it should have been processed by now, for this process should take between 6-8 weeks. I was then given a schpeel about the various stages of making a claim, and I was told that they may contact my Medically Trained People (paraphrasing) to see if I am truthful (paraphrasing again). That was exactly the same information I was given in September, and given the fact I had to provide contact details, I found this statement outrageously shocking. Oh, and I may be asked to attend a physical assessment. The DWP could not help me further, so I was given the telephone number of ATOS, to hasten a response directly.

Twenty minutes later, I spoke to a lady at ATOS, who informed me that they were in fact in receipt of my claim, and I needed to be aware that when my claim is being investigated, my Medically Trained People will be contacted and I may be asked to attend a physical assessment. I asked why it was taking so long, in my polite voice, stating the timescales I had just been given by the DWP, to which the the lady became agitated. According to her, the DWP had no right to say that to me, indeed, the DWP is to blame for the whole thing, because they underestimated the number of PIP claims to be processed when they introduced the new benefit, and presumably, contracted out the service. The lady was mad. I feel I calmed her down when I said “okay”. She then decided to tell me that when my claim is processed, I should expect for my Medically Trained People to be contacted and said I may be required to attend a physical assessment. It was good to know, because I had forgotten. We finished the conversation with me being told that there is no timescale by which my claim needs to be processed, when it is, I’ll be contacted by the post.

This is my first experience of the UK benefits system. I am very impressed by it.

I just know that when I finally receive the letter, the dog will have eaten it before I have a chance to read it.

EJB x

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Reliance

I have spent a good five months telling myself and anybody else who would listen, that I could walk without my beloved walking stick and that He was only needed in my palm to tell the general public that I had issues, so I did not have to. I am a strong, independent woman, who absolutely positively can walk substantial distances without a walking stick.

Sadly, this is not the case. It surprised me. I might be able to walk unaided, and frequently walk short distances without it, but as I discovered on Tuesday, there is a price I pay for doing so. I rarely go anywhere without my walking stick. It is true. I may walk around my flat without Him, but if I am leaving my front door, he is in my palm, and we are together. On Tuesday, I did leave my flat without my walking stick, I did so because I could not take Him and my luggage and I calculated, that as I had no intention of going on public transport during my holiday, I would not need Him. On Tuesday, as well as leaving my life to have a stem cell transplant, I also walked a great deal, around the hospital’s unofficial campus, unaided. Until approximately 18:45hrs, I thought absolutely nothing of it. Why would I? I never normally think about it, and on Tuesday, my brain was preoccupied with my transplant, to spend time thinking about my back pain.

That is the problem with my disease, my focus this week should have been solely on fighting this wretched thing, and not having to worry and let’s face it, experience severe pain, from my lower back. Pain is a byproduct; it is not the cancer. Even this week, I have to balance the two and remain cautious of the pain. When the illness sets in, everybody will be looking at the side effects, but I know what my neck and back will feel like after days of lying in bed. It will not be pleasant.

Anyway, by the time I realised why I had spent Tuesday night feeling like a horse had kicked me in my lower back, it was Wednesday… Not knowing how long I will be expected to walk around before I am sentenced to solitary, meant I had to get a replacement, which was much easier than anticipated thanks to my favourite receptionist. It is a ‘temporary’ replacement. I do feel like I am cheating. I am cheating on my beloved walking stick, with a younger, cleaner model. The new one still has his stickers in place and there is more of a spring in his step. And yet, I am yearning for my love.

Now then, if this wasn’t enough evidence for me to get a Freedom Pass, then I do not know what is.

My name is Emma Janes Jones and in addition to having myeloma, I, unfortunately, am disabled.

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The Number 30 Bus

Okay. It was an accident. I was out, in public, socialising. I needed to get home. There were no available taxis on Mare Street, London, England. There was however a bus, the number 30 bus. So, I bit the bullet and got on the bus for all of eight minutes. I sat on a Priority Seat. I then walked from Balls Pond Road, London, England to my Flat, London, England, Earth, The Universe.

It was accident. I know I have a cold and I do not want to catch anything else. I also know that buses are not the places for people with wobbly spines, but, I just got the frickin’ bus. The last time I got a London bus, or any bus in fact, was on the 12 August. I was in so much pain during that particular journey, I cried. I didn’t cry today. I am not going to make a habit of it. People are dirty. Before you take offence, I am also dirty for I am a person. But, I got the bus. The number 30 bus. I prefer other bus routes, but beggars and all that.

I do apologise to all those people, well, the three of you, who told me not to get the bus today. I promise, it was a Β£2.30 accident. Really.

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