Sunday, 30 April 2017

Friends without Benefits

I have been debating on and off, whether to include this in my blog about ‘living the dream’ as I adapt to disability and illness. I have commented/documented/moaned about many aspects of life at the elephant house these days. I have described my battles with trouser waist- bands, wondered if I were living in a foreign country, and asked why spoons should mark my limitations. I have battled skirting boards and doors in an effort to get used to my walker, and shown you how pain can sometimes inspire some very raw artworks….

But there is one subject that has absorbed almost all my energy in the last 8 months, and that is my ongoing battle to receive PIP. This is the benefit that is there to provide financial help for those unable to do simple household tasks, cooking, washing, dressing, and who have limited mobility. Essentially it is the benefit that acknowledges that you are disabled...and more importantly helps people pay for the things that help them to live independently ( which I would really struggle to do without spousal help and his love of me and his kindly tolerance of all things MEish and POTsie ;-) )

It turns out that in addition to having miniscule amounts of research funding, and a militia from the field of Psychiatry who are determined to prove that ME patients are mentally ill and have invented an illness that doesn’t exist…..we are also discriminated against by the Social Security System. This does not just apply to me, many in our online community are up against the same wall of indifference and cruelty...

I am lucky as I have support, not only from Mr H, but as an unexpected ‘benefit’ of this process I have connected with so many others who are being put through the same wringer and have received so much good and useful advice, together with cheer-leading words (‘ I will be shaking my pom poms for you’ stays with me!) Like pots forming out of muddy clay, new online friendships have started to take shape.

We also have a wonderful CAB benefits worker, who we did not involve until late on. But the point is this- you should not need psychological support or professional help to apply for a benefit, that according to the DWP’s own definitions, you are entitled to (which I am).

The form I had to fill in was very complex to the point that even with someone else reading the questions and writing the answers,as I lay on the sofa with my eyes closed, it made me sicker. I am lucky enough to have a GP who not only understands my situation, but is happy to commit what my limitations and difficulties I have, to paper. Other friends of mine are not so lucky. I was also fortunate enough to spend 2 weeks at a hospital specializing in ME last year. I have a wonderful Occupational Therapist. So... with much paper work from professionals, and right on my side, I felt quietly confident.

Yes….you can guess the rest. I am now awaiting my appeal against an award of ZERO, nada, nil award. Apparently I am able bodied! I could hardly wait to give my body the good news, that it could just get off my backside and start acting normally!

The case will be heard in a Magistrates Court. I feel as if I have committed a crime and are being held to account...and my punishment could well be that after 11 months of stress ( the date of my appeal is likely to be another 3 months away), I will receive nothing. The case seems to rest on the fact that they don’t believe: me, my GP, my OT, my ME specialist and my local MP ( who is supporting me). I am not exactly confident.

No one has been able to tell me why anyone would put themselves forward for this hell if they did not genuinely qualify. If you are thinking that it would be possible to fake any of this to get free money- I can tell you that it is not. I have had jobs, I have earned money, and trust me, being ill is the hardest work I have ever done...and absolutely the least lucrative.

My emotions have gone down and down throughout the waiting. I feel very humiliated by the process of having to sit on the road of life and just beg. Not only have I not been given any coins, I feel as if my cap has been stolen and my faithful dog kicked.

Initially I was slightly in denial that I needed as much help as I do,….but after trawling through my humiliating limitations in the sort of detail that my best friends don’t know about me,(the bra I can’t wear, how long it takes me to recover from a shower, the walking I can’t do). I now felt proud to call myself ‘Disabled’ I had no idea what they -we – have to go through, to survive.

I pushed myself very hard to write the mandatory reconsideration letter, which I believe has contributed to the last 3.5 months of flare up.
This period of time, when pain and limitation have been the worse they have been for over 20 years, has made me feel even more determined to get what I deserve and need. The irony of being told that I am not disabled -at a time when I was struggling to accept that I AM disabled- has not escaped me. If I can share my experiences of the form, the ‘medical’ , the mandatory reconsideration, the appeal process...and demystify at least some of these processes, then I will at least feel there is a point to all this.

The benefits system feels like an incredibly personal kick in the goolies, when in fact, the one thing the system does well, is to NOT treat you like an individual. The goal is to save money and people like me are collateral damage.

Becoming disabled is not a lifestyle choice- it isn’t on anyone’s bucket list. I am happy to have the support of friends also tangling with the benefits system, but I wish with all my heart that they didn’t have to suffer alongside me.

Wednesday, 29 March 2017

Gallery of my Disability/pain related artwork

The Spoons Don’t Work….

Over the last 18 months, I have been reading as much as my tired and foggy little brain will let me, not only about the nuts and bolts of ME (I am all too familiar with that!), but about how to communicate the experience to the average chronic-illness-virgin. I am also a chronic pain sufferer and it is similarly difficult to explain to the average person what it is like to be in constant pain that is apparently not going to get better, and has no specific cause.

Whilst friendships with healthy people have withered and fallen like crusty brown leaves to the ground, I have made new and warm connections with the very elderly and the chronically ill. I do not kid myself that this would have been probable (or even desirable) before I became a refugee, fleeing the uninhabitable world of wellness, and finding a safe haven with those who are generous with the little energy they have.

Nevertheless there IS a need to explain my deeply baffling illness. There are times I need to defend my corner, and need to know how to articulate the fuzziness of our illness to a ‘healthy’.

I have discovered there is a whole new vocabulary for our diminished energy supplies, the best known being the ‘Spoon Theory’. For me at least I find this termanology frustratingly unhelpful. In brief; the idea is that a bunch of spoons, real or imagined, can be used to explain how the energy of a chronically sick person is drained: Eating breakfast: one spoon gone, taking a shower, minus another spoon and so on until I am spread like jam on the nearest mattress-‘spoonless’.

This similie doesn’t work for the simple reason that on any given day I never know how many spoons I have to start with. Sure, I know if I have slept badly and wake grumpy and in pain, it will likely be a beast of a day, but it is not always so easy to predict. Some days are slow to get started and then I find a surprising burst of energy after my nap. Other times I feel quite good and energised first thing, only to crash at 11am and am forced to retreat to my bed for the duration. The explanation is obvious: someone is nicking my spoons!

There is also the Energy Envelope ( the amount of energy I have most days would fit easily into an envelope), Energy Account ( at the bank of un-co-operative. where I can never get an accurate statement and someone keeps withdrawing my money), and Marbles (as with the Spoons, how do I know how many marbles I have or use?)…and don’t get me started on 'losing my marbles' which becomes more likely with every day that passes..

Why am I getting so steamed up about a handful of spoons, a virtual bank account and a lot of glass balls? Maybe it is because if I had a more ‘recognised’ long-term illness I would be getting treatment, not similes.

We are told we must have a new way of seeing things, a new attitude to being sick. We must work 24/7 at being ill and in addition we must advocate for ourselves in a world that is baffled by our illness, and is barely funding research to help us LIVE again.

It seems that when the medical profession can’t understand or cure something, they then turn the responsibility back to the patients. It can only be our own fault to have allowed ourselves to become ill with something that defies explanation: our punishment is to be forced to waste our minuscule energies on into ‘managing’ the unmanageable. Doctors telling us to pace more,is like the captain of the Titanic complaining that the ship is only sinking because the deckchairs are poorly arranged.

It is good that many people find the spoons etc helpful, and yes, I know most of these ideas come from patients themselves. Maybe I was just not drawn that way. I don’t believe that life can be codified so readily. Whilst there are activities that always take up a lot of energy, most things vary according to other elements that are completely outside my control: the season, time of day, other infections, my cycle, OTHER PEOPLE, receiving good/bad news, and for me how Mr H is- as there are two of us chronically ill at the elephant house. I would have to be a master statistician to analyse the spoons out of that lot!

ME is no respecter of our plans, schemes and attitudes. To paraphrase the saying; ‘ ME goes on regardless, whilst you are busy making plans’

Wednesday, 15 March 2017

It’s a Knockout!

You many or may not have memories of watching a TV programme with your parents called ‘It’s a knockout’. The show was hosted in a different UK location each week and featured local ‘ordinary people’ from two nearby locations, competing against each other in teams. The games were outsize versions of a junior school sports day: people were tied together, awkward objects were carried, races were made more difficult by the addition of foam, water or slippery surfaces ( no health and safety in those days)….and to add to the ridiculousness, most people were dressed in enormous foam suits that sagged high over their bodies, and had giant feet to trip them up for the hilarity of all.

During the last few weeks, I have been in a constant race of knockout , as I try to navigate a small flat dressed in baggy leggings and fluffy slippers, whilst slowly steering a bulky walker into door frames, spilling tea on the carpet and watching as my stick clatters to the floor nearly tripping me over. The International IAKO, was called Je sans Frontiers , or Games without Frontiers. The war that I am in is one where the borders are constantly changing, and the rules obscure... until you break them. I am not finding that much hilarity actually.

The times I am not in active combat with carpet rails, door frames and my own bruised body, I remain in a kind of shock at how quickly I have become immobilized. Up until three months ago, I used a stick in my rare forays outside the house, but inside the going was incredibly slow but steady.
Then just before Christmas my body stopped co-operating with its owner. I found myself sinking to the lino or propping myself up on the door frame on a trip to the loo. Pee breaks became something to think about a lot, but only do a little, as raising my frame onto my fragile legs was such a task.

As this sorry state of affairs dragged on I watched myself trying to juggle a stick, a cup of tea, and a bottle of water, then pausing to rest on the stick, and dropping all of them. I have forgotten my stick many times, and ended up stranded in the front room ( no we don’t live in Downton- its a 2 bed flat on a housing estate). I had begun to load myself with bags slung across my body to minimize the number of trips to and from the bed. I felt like a drugs mule.

One day I snapped- I don’t recall the specific straw, but I do remember how the camel’s back felt….yeah- not fun!! The following Monday I called the Occupational Therapist- and voilĂ - I now have the Swiss-army knife of mobility help; loan of wheelchair as needed, Walker ( with seat and bag ), kitchen trolley for transporting stuff...and my old faithfuls, my stick and mobility scooter. And yes….I am still mainly stuck in bed!

So this is life for the time being: I shamble around pausing many times- an absurdist figure that just isn’t funny. When I tell her, a friend offers me the kind loan of a china potty. On second thoughts I prefer to think of myself as a toddler- going from the depths of despair with every fall, but getting up with a big smile to try again.

Wednesday, 8 February 2017

My Relationship With Trousers- It’s Complicated.

Ah!- you can’t live with them, can’t live without them...a woman needs a pair of trews like a fish needs a bicycle. Alas, this elephant won’t be pulling on some spandex for a spot of off- roading anytime soon...but, I DO need fabric to cover my legs.

I am not going to use this space to bemoan the state of my legs, but despite the appearance ( averagely unfit person/elephant of middle vintage), they FEEL so much bigger. I can’t lie, my legs and I- we have issues….and as for my backside, I could write a novel on how complicated it is for me to sit these days. So, trousers/leggings/pj bottoms and their crotches, seams and waistbands and I have a love/hate relationship. That is: I would love to wear them, but I hate how uncomfortable they make me feel.

In addition to having ME I am also a Chronic Pain veteran. To those of you who have not experienced the joys of this, here is an edited version of Chronic Pain FAQ’s-

Yes, I am in pain all day every day for 95% of the time,
yes, I have pain every day,
yes, you can have pain that you get for no reason,
yes, there is pain that Drs just can’t understand,
Yes, I do take pain killers- lots of the ****ers!
there is no medication that completely gets rid of the pain, you can have enough opoids to knock out a brontosaurus and you will still be in pain. To get pain free you would need bucket loads of morphine and some sedatives washed down with a flaggon of Brandy...and you would be asleep.
no- exercise makes it worse not better, and I don’t want to speak to your pilates teacher/chiropractor/Shaman.
yes, I have tried various solutions/remedies/regimes/doctors/diets etc.
and voila! I am still sick and in pain, and poorer….
no, I am not a freak: sadly there are millions of us across the world in similarl positions.

Anyhew: having said all of the above, the main site of the pain is pelvic, lower back, middle back, sciatic nerves and buttocks- aka those glutes are NOT going to be happy if I try to drag a pair of jeans over them. I also have ‘ME pain’ throughout my body which makes me feel ghastly.On a bad day even looking at my underwear hurts. So it’s baggy tracky bottoms all the way in this house- although as I have to lie on a heat pad most of the time, it is better if they are cotton otherwise I am sweating like Black Beauty.

I haven’t given up on finding something trouser shaped that can be comfortable, but until then I rotate the usual unattractive suspects until I find ‘The One’ - crisply tailored work trousers having been consigned to the charity shop where some wardrobe- hungry lady, will buy the archeological remains of a life once lived.

Trousers- can’t live without them, can’t live comfortably with them. Not so very important, but not insignificant either….I mean: I can’t wear these fig leaves for ever ;-)

Wednesday, 1 February 2017

The Land of Chronic Illness is a Foreign Country- They Do Things Differently There

As the great philosopher, Dr Seuss once observed:‘You’re in pretty good shape for the shape you’re in.’

Yep. You don’t feel great. You don’t look great either- except when you make a big effort and everyone thinks things are back to normal- good news- you’re well again! Except that you are not. Phew! You may be chronically ill but at least you won’t be embarrassing people with your lack of grooming skills.

Your body, your lovely, lovely body (oh how you appreciate NOW all that it has done for you!), who you have taken onto sunny beaches, shovelled takeaways into, forced onto long walks and into dance classes and pub crawls, biscuit binges, hearty sessions of coupling and clubbing, and long days at the office, has HAD ENOUGH!

In my thirties I spent some years living abroad. I can still remember the intensity of my first months there, of my head and heart bursting with complete incomprehension, of the relentless over-stimulation from new noises, smells, foods, colours, …and I mourned and grieved for the things I had left behind in a way that I would not have thought possible.

If we are lucky, and then our lives in the developed world are spent holding back a continuous tide of viruses, bugs and minor ailments, so we tend to get a big ‘meh’ about health problems. We have ‘earned’ the right to be healthy- we eat the right foods, take in the current thinking on gluten, cholesterol, mindfulness, stress, and running. We know that if we do get sick, either time or the right drugs will sort things out. We are better than illness: and if we make sensible decisions, we stay well. Right?

The day when your body announces to you that it is not going to do what you want anymore is not usually that different from a lot of other ones. It is no wonder the Emergency room has proved to be fertile ground for the writers of TV dramas. The beginning of a long-term illness would never keep the audience transfixed on their screens. Weakness, pain and incapacity can often creep up with a cruel stealth…so when the specialist asks you exactly when the problems started, you might find it difficult to answer.

The body that has served you faithfully, usually unappreciated and largely unnoticed, has now turned treasonous and is apparently going to continue to inflict assorted indignities and pains upon you, which looks like being as much fun as the plagues of Egypt, and likely to last longer. Welcome to the world of the Chronically ill!

Chronic illness takes no prisoners. It takes a perverse pleasure in starting small with pain, fatigue and assorted symptoms before moving on to the smashing up of your social life, your sex life, your fitness, your appearance, your job, your status, your finances, your confidence and numerous relationships and ambitions- in fact most of what you were, is now in the past and filed under ‘memories’ and the future is full of uncertainty. Your body doesn’t look or behave the same, and you won’t feel the same. In fact often you won’t know what to feel . 

You will try to accept the fact that you have been sacked from your previous life and given the 24:7 job of ‘being ill’. You will become a professional patient and will become like a truffle pig, rooting out every tiny scrap of help and information in order to gain that precious diagnosis, but then the diagnosis is that there is no cure and you are likely to be stuck in this hellhole for the foreseeable future, and you will wish you hadn’t bothered.

To paraphrase L.P. Hartley:
 ‘ The land of chronic illness is a foreign country; they do things differently there.’
Change is not easy when you want it, but when it bursts into your life uninvited, it can feel as violating, as if you have been broken into, and strange hands have been rearranging your sock drawer, and curious eyes reading your diary.

There is a lot of disruption to process mentally, a lot of adaptations that will need to be made, in this new country of illness. And did I mention that there is a temperate climate in this country: yes, there is a lot of precipitation, a lot of tears, a river of them in fact. But in time the structures that have burned down will turn to ashes, and the tears will water this fertile soil, and something new will grow there. Only time will tell when that will be, and what that will be.

I cannot Buy a Guinea Pig

I cannot buy a guinea pig.

I cannot buy a cat because I am allergic to their catandruff. A dog would need walking…and you can’t cuddle a fish.

I cannot buy a guinea pig because I cannot put another creature in the position I am in. I cannot make it sleep inside a box when there is a whole life out there that needs exploring. I cannot make it stare through a grill at the world and try to keep its sanity between the times it is allowed out.

I cannot make it scratch around the carpet, when it would rather be speeding around on the grass with the sun on its little back. I cannot buy a guinea pig, because us animals need air that is fresh and cool and has not been breathed out a million times by others.

I cannot buy a guinea pig because if nothing else, I can supply the guinea pig I don’t buy ,with my love and freedom, in the biggest garden,(I imagine), so the critter can see only green to its horizon…and have other guinea pigs with which to fight and play.

I cannot buy a guinea pig.