Money, Money, Money

I’m not someone who is driven by money, money, money. I’ve no desire to amass great piles of it, and I struggle with the idea of people having vast fortunes way beyond any person’s need.

It is very nice to have enough money, by that I mean enough to live comfortably, to pay one’s way in life and to be able to live a fulfilling life.

I haven’t been able to undertake paid employment for quite some time due to ill health and the process of ‘trauma recovery’. The latter can in itself be a full time occupation. I was in paid employment as a broadcast journalist when I met the man who became my husband and I was able to contribute to our union, but he went on to support me financially for some years due to my ill health.

I’ve been in receipt of welfare support or benefits for a little over a year and a half now. Obtaining them is a stressful, arduous and sometimes dehumanising experience. Some months after my marriage broke down, I found myself unable to afford to heat my home or buy food. A couple of friends helped out but I had to rely on food parcels for three months, from one of the UK’s growing number of food banks.

I receive Employment and Support Allowance (£250 per fortnight), Housing Benefit (£500pcm) and a discount on my council tax bill meaning that I pay around £30 per month instead of more than £100. My rent costs £670pcm. I live in a one bedroom flat. It’s not ‘flash’ but it’s certainly comfortable. It could be cheaper if I were to move, but this is the first truly safe home I’ve known. It’s my haven. I don’t have the money for moving costs and waiting lists are long for local authority-owned property.

I am extremely mindful of my privilege because I’ve been able to obtain some financial support from the Journalist’s Charity, the charity for people who work or have worked in that profession. A friend wrote recently about her gratitude in having been able to turn to ‘Pharmacist Support’.

With the support of the JC, I have been able to have my hair cut and coloured this week for the first time in over a year. What?! I know, you might hardly consider a ‘hair do’ an ‘essential’. It was a scraggy, greying mess and together with my alopecia (I have female pattern balding) it was having a big impact on my self esteem. I am happier and healthier for it.

I was also able to visit the dentist, after many months, for a much-needed appointment, because I finally had the £20 needed to pay the fee I owed for a short notice cancellation due to illness.

I’ve been able to make an appointment to have my eyes tested next month, two years overdue, because I will have the money to pay for the new spectacles I need. They will be available at a reduced rate because I am in receipt of ESA but will not be free.

I’ve also been able to buy a number of healthy ‘ready meals’ – a ‘godsend’ while I continue to wait for social care support twice a week to be put in place, and continue to struggle to have the capacity for cooking. The healthy part is vital, particularly as I continue to try to recover from an eating disorder.

On a few occasions I was able to take a taxi to get me to vital hospital and GP appointments that I would otherwise have been unable to make due to my health issues, and also to return home from buying food from a budget supermarket. Budget supermarkets do not make deliveries.

Without that charitable support … NONE of these things could have happened. 

I have received support from the St Margaret’s Fund who gave me £200 towards the cost of a respite/convalescent break last year. I’m applying to another organisation in order to try to obtain funds for a similar break this year.

It is charity. I would rather not have to rely on it BUT at the same time I don’t feel ashamed about accepting it. I don’t find it easy to ask for that help but that’s because I know that in our society it does carry some sense of shame. People say things like ‘it’s not charity’ and they try to dress up ‘charitable support’ in some other way, as though accepting charity is a terrible thing to do. I’ve supported many charities, by donation and by fundraising, and I still donate, when I can, although just a pound or two here or there, supporting someone’s fundraising effort or buying a copy of the Big Issue. I believe in giving and I believe in sharing and I believe in a society that promotes opportunity for all, and which supports those who are in need.

Applying for the charitable support that I’ve received involves completing detailed application forms. I have often struggled to do this due to illness and have had to wait until such time as I could find just enough capacity to complete the task.

It’s struck me that much of the support available has a middle class tone. I was born and bred in a working class ‘cotton mill town’. I consider myself to be working class, but I know that many working class people would consider me middle class because of my privilege. I had a university education and have a professional qualification. I live in a middle class area, albeit on the edge of it and that of a ‘poorer’ area. I love literature, theatre, arts, read the Guardian newspaper and listen to BBC Radio 4. I consider those interests classless – I’ve loved all of them, with the exception of Radio 4, since my ‘cotton mill childhood’ (when I listened to Radio 1!) – BUT realistically I know that you need a certain amount of privilege to pursue them. It’s rare now that I go to the theatre because of the cost involved.

It seems that there’s privilege even among those who are poor. There is a charity offering financial support to ‘gentlewomen and artists’. I’ve seen others offering support to ‘gentlewomen’. Their definitions of what constitutes a ‘gentlewoman’ are undeniably middle class. They list ‘suitable’ professions and backgrounds, all of which you need to have had a certain amount of privilege to be able to claim. Being working class can considerably narrow one’s opportunities. A minority of students at Oxbridge come from working class or ethnically diverse backgrounds and that’s just one example.

What happens if you don’t belong to a profession with its own charitable body? What happens if you don’t have the means to discover that there are charitable organisations who may be able to help you regardless of your status, professional or otherwise? What happens if you don’t have Internet access, the default application process is now online, or aren’t even computer literate? I don’t envy those who must throw themselves entirely at the mercy of the state, run by many for whom privilege is everything.

Two links to UK based web sites that may be useful:

https://www.turn2us.org.uk/ – much useful information for people struggling financially and there is a section where you can search for organisations offering grants

http://www.disability-grants.org/grants-for-disabled-women.html – a database of organisations offering a variety of financial support to women with disabilities – the main site offers details for men too!
N.B
I love ABBA but I adore Meryl Streep, that’s the reason for the link to the Mamma Mia film version of the song at the top of this post!

 

Going loopy?

I hope you’ll forgive my play on words. I like a snappy title, and a spoonie’s got to have some fun 😀 . The (excellent) Spoon Theory itself is particularly relevant to this post.

I have an appointment with my (fairly new to me) GP tomorrow afternoon to discuss the results of recent tests – blood, urine and E.C.G. They were ordered because I’ve been experiencing palpitations and episodes of breathlessness, among other new symptoms, and because my GP also found my blood pressure to be high.

In the last week alone, my skin has continued to flare, although much less dramatically thank goodness. I’ve been having joint pains (Fibromyalgia produces widespread pain but it’s felt in the soft tissues of the body), headaches and further episodes of blurry vision. This weekend I have mouth ulcers. This is on top of my usual spoonieness!

I’ve twice been referred to a specialist – rheumatologist – ten years ago and again around five years ago. I was living in different cities and so went to different hospitals. The first specialist was not especially thorough. He said the results were inconclusive but that I probably have Fibromyalgia. He told me to look it up on the Internet and that was that.

Fibromyalgia and Bile Acid Malabsorption – my primary (physical) diagnoses are not progressive conditions and yet my symptoms have progressed. In the last five years alone – I have been diagnosed with Alopecia (hair loss) and Rosacea, both by a dermatologist who considered Lupus, but decided against the diagnosis on balance; Polycystic Ovary Syndrome, test results (bloods and two ultrasounds) were inconclusive but my then GP said … “it probably is that,” and so endeth the investigations; and finally I was diagnosed with Raynaud’s Disease. The (new to me) female GP who diagnosed it printed an information leaflet for me and, as we looked through it, we quickly realised that I met the criteria for secondary Raynaud’s (that’s Raynaud’s secondary to an underlying condition that’s causing the Raynaud’s) rather than primary Raynaud’s (Raynaud’s in isolation). Are you still with me?!

This prompted my second referral, with the GP querying Lupus (there’s that word again) or mixed connective tissue disorder. This experience of the rheumatology specialism was far more thorough. I spent several hours at the hospital undergoing numerous tests. Again the results were deemed inconclusive, and no ‘unifying’ diagnosis was made or follow up required.

I’ve been concerned for some years that a single underlying condition may link my symptoms but have accepted the various findings and got on with things as they stood.

I appear to be in active ‘flare’ at the moment, with some new symptoms, some not, and some apparent worsening (progression) of existing symptoms. A referral to a specialist generally means spending time on a waiting list. Perhaps at previous points of testing I was not ‘actively flaring’ and so the results were inconclusive. I am hoping that this time, if there is something to be found, that it will be found. Am I going ‘loopy’? In other words, do I have Lupus?

I should note that I’m not angling to have Lupus. Who would? It’s an serious auto-immune (where the immune system becomes overactive and attacks healthy tissue) disease. It can be experienced relatively mildly but can affect the major organs of the body – including the skin, and also the heart, lungs and kidneys. Like a lot of the conditions that fall into the spoonie/chronic illness category, it is experienced differently from person to person. Again, like other spoonie conditions, it can be difficult to diagnose. I know that something is going on with my body and I’m concerned that if correct diagnosis hasn’t been made, that irreparable damage may be occurring unchecked.

I eat healthily (outside of the two episodes I’ve had of diagnosed eating disorder), I very rarely drink, I’ve never smoked and (outside of being incapacitated by mental illness) I am as active as possible and enjoy exercise.  My symptoms began occurring in my late twenties. I won’t bore you by listing them all but they and their onset are commensurate with connective tissue disorder BUT could also be otherwise explained; that is the nature of the beast.

My status as a trauma and abuse survivor has impeded diagnosis of my physical health problems. For a decade my symptoms were put down to my then depression and anxiety. It’s true that mental illness can certainly impact on the body, but there was enough to suggest that more was going on for me. It has often been ‘a fight’ to be taken seriously, and that in itself took its toll. I know that this a problem in mental illness care at least here in the UK, and that physical illness is often missed or ignored. It’s reported anecdotally and mental health charities have also taken up the issue.

Increasingly, I’ve noticed that GPs, pushed for time and with limited resources at their disposal, are tending towards doing the minimum and ‘fobbing off patients’ where possible. The service appears to have become more reactive, with preventative measures taking a back seat in our underfunded, over-stretched National Health Service (NHS) in the UK. This is not an attack on GPs or the NHS. I very much value the NHS. I believe that we are incredibly lucky to have such a service and should fight not only to protect it but to ensure that it’s in the best possible health, if you’ll pardon the pun.

As a result of my experiences of abuse, my ability to be assertive and to advocate for myself has been impeded. That is changing, slowly but surely. Christine who devised The Spoon Theory and helped to create an international community of people trying to live well with chronic illness, has Lupus as her primary diagnosis. Spoonies are likely to tell you that it is very important to be your own best advocate. I hope I can be mine. I’ll let you know the outcome of tomorrow’s appointment.

Thank you for reading. Comments, chat and tweets are welcome as ever, particularly in this case from other spoonies who may have some thoughts on this.

Heart x

 

 

 

This cannot be fixed by relentless positivity and boundless enthusiasm.

I turned a corner again yesterday.

The previous three days – Friday, Saturday and Sunday – were incredibly difficult; hellish. Lying in bed in the early hours of this morning, trying to switch off and sleep, I found myself feeling as though someone else had lived those three days. I had some memories from those days and yet, in those moments lying in my bed, it didn’t feel as though the me lying in bed was the same me who lived through those three hellish days. I haven’t considered it as deeply since, I’m slightly afraid to do so.

I was certainly very depressed during those three days, triggered by further bad news about my financial circumstances that has, for now at least, eradicated all hope of avoiding becoming homeless in December – with nowhere to go or stay. It is a harsh reality. Coming after so much loss – almost entirely due to the abuse I endured in childhood and beyond – losing all family, friends, my career, previous good health, the chance to have children, my marriage, independence, a significant amount of memory, even a not inconsiderable amount of hair due to alopecia, and more related to those losses – the prospect of further loss is terrifying. More than that, it’s unbearable.

I’ve survived all the rest and coped, often alone, I feel unable to cope now. Finally I’m saying I can’t take any more. Despite intensive efforts, I’ve as yet been unable to find support to avoid this feared loss becoming reality. I need a miracle …

In that terribly depressed state during those three days and yesterday too, before I really started to emerge from it, I was more readily accepting of that harsh reality. I am generally a realist. I don’t tend to shy away from harsh realities or stick my head in the sand.

The me that has emerged, from those three days and more, is still very much aware of the horrid reality that I’m facing. It’s a me that is still very much depleted and strugging, but it’s not deeply depressed. That ‘not-deeply depressed’ me (something far closer to the essence of me – some might call that my ‘authentic self’) wants to go ‘Tigger’…

You remember? A.A. Milne’s terrific tiger with boing. He of relentless positivity and boundless enthusiasm. I’m a bit Tigger, certainly relentlessly positive and possessed of boundless enthusiasm, deep depression notwithstanding. Lying in bed last night, thinking as I was, I felt Tigger me, desperately wanting to find hope, desperately wanting to find a way to live.

With the best will in the world and despite having ‘where’s there’s a will, there’s a way’ as a life maxim, logic tells me that I cannot Tigger my way out of this situation.

My own collection: Tigger is the one with THE tail, much as I am the one with a heck of a tale. I'm increasingly afraid that my story cannot have a happy ending.
My own collection: Tigger is the one with THE tail, much as I am the one with a heck of a tale. I’m afraid that my story cannot have a happy ending.

Peace and Loneliness

I’ve been seeking peace of mind for some thirteen years, since my abuse came to light and I finally broke.  I hoped to find it with my husband, but the marriage brought more fear and sadness. There was also laughter, sharing and wonderful cuddles ( I shall miss those) but the shadow of that fear and sadness loomed large above two people who in order to be themselves could not be together.

Peace of mind to me means living free from threat and fear; it’s a sense of safety, security and wellbeing.

I’ve yet to find that but in the new life I’ve made in the three years I’ve spent living in my adopted city home, I have experienced happiness, joy and contentment. Above all I’ve found me and quite frankly that’s really something to shout about. The freedom, the contentment that feeling comfortable within yourself can bring is immeasurably marvellous; it makes my heart sing.

I have always been able to picture the real me or my true self, my authentic self, if you prefer. The abuse I experienced could not obliterate that image but it did severely compromise my ability to be me.

In the last two years I’ve lost a lot of weight –  much of that piled on some years ago in the aftermath of my initial breakdown – and it’s meant shedding a physical and psychological burden. I was trapped inside somewhere, by losing weight I’m breaking out. I no longer cringe when I catch sight of myself, in fact I often beam! Photographs are still difficult because of issues with my teeth – which I hope to soon address – and my ongoing alopecia. My hair loss is permanent, I am teaching myself to just ‘rock it’! At last I have the confidence to wear clothes that I love and finally begin to develop the sense of style I could always picture. Shapeless cover-ups are long gone. I’m experimenting with make-up – not to hide but to enhance and most of all for FUN. Last week, for the first time, I had my eyebrows waxed and I loved it! I did it because I wanted to do it; I felt pampered. I grew up being schooled to ignore my own needs and to believe that self-care was a bad thing – self indulgent, selfish, an unnecessary frivolity.

It took a lot of hard work to recover from an anxiety disorder and agoraphobia and until very recently I still found it difficult to go into small shops. I live in an area with a fabulous old fashioned style high street filled with independent shops – an artisan bakery, a greengrocer, a cheesemonger, a health food store among them. I was too fearful to enter them because their small nature, their intimacy, felt too exposing and left me with nowhere to hide. I felt I didn’t belong, that I wasn’t worthy of being there. NOT ANYMORE!! I stride out with a funky basket on my arm (bought some years ago and saved for just such a moment that I was determined would come) and away I go. Now in my forties, I’m beginning to live.

 ****

Yesterday was difficult. I felt acutely lonely. Those feelings began on Friday evening and I felt bad about being so affected on a day when I’d had a considerable amount of meaningful contact. I rarely get so much and usually would ensure it sustained me for days.

There was an appointment at the GP surgery with a nurse with whom I have connected. During my mammoth weight loss programme she offered, unprompted, to accompany me to a local pool to fulfill a dream to swim again after a gap of many years; to ‘hold my hand’. Her compassion and willingness to engage quite took my breath away. My burgeoning self confidence received a bonus boost. I haven’t yet taken her up on the offer, although I did buy a swimming costume last year, but I hope to do so later this year. I still have a lot to do and limited spoons with which to do it and have had to accept that I can’t do everything at once. She was pleased to see me yesterday and recognised me although we have only met twice, the last time some months ago. It’s a simple thing but being recognised, feeling a connection, means so much. I’d lived so very long in isolation having lost all links due to illness and the abuse. I have no family, having had to cut myself off from what was left of it because I was being abused. Friends had distanced themselves then disappeared, some outraged that I’d had a ‘breakdown’ believing mental illness to be not an illness but a weakness or character flaw. Others were suspicious, appearing to think I had ‘gone a bit weird’ claiming abuse that couldn’t possibly be, so dazzled were they by the polished veneer expertly laid over our family to hide the soiled lives beneath. For years it blinded me too. Perhaps others just didn’t know how to deal with me. I distanced myself from the few who remained fearing further rejection or ridicule.

Back to Friday and I arrived at a lunch date with a friend, buoyed by my encounter with lovely nurse and it too was lovely – another connection and growing friendship. Our conversation was lively and varied. Talking about my situation and the realities of Operation Fight Back (my endeavour to recover from a recent set back and continue my lengthy ‘rebuilding programme’, in the wake of my marriage ending three months ago) was, is, helpful. Without an outlet, pressure builds to dangerous levels. However, talking and sharing as oppose to silently getting on with it, brought my isolation into sharp focus. My friend talked about being ‘adopted’ by older friends following the deaths of her parents. I’ve long dreamed of that happening to me – that may sound a bit drippy! I’ve had little experience of relationships with a parent figure that wasn’t toxic. I feel the absence of healthy versions of those relationships. I don’t have someone to look up to, to turn to, to seek advice from, or feel loves, cherishes, knows and accepts me. That’s how it is, I live with it, I seek to keep developing myself and my life … then who knows what might happen? Still, sometimes that loss, that absence, that pain, punches me on the nose … really hard. Watching Sport Relief  that evening I was undone. It featured a report about a 92 year old gentleman’s sense of loneliness following the loss of his much beloved wife to Alzheimer’s Disease. I felt for him so much but when the television  presenter spoke of the terrible problem of loneliness among the elderly, I wanted to shout at the telly you don’t have to be elderly to experience terrible loneliness. 

I ran yesterday (stats at the end of this post) morning but that and the bare basics were all I could manage. I felt low and I was hurting. Texts from two friends later in the day offered welcome respite. I hung on and today dawned more brightly.  The *?!*?’* is back in its box.

Treadmill stats for Saturday:

12mins 20 – all run = 0.73 distance and 67.1 cals