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 ūüėÄ . 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

 

 

 

Treadmill Tales: #9 and #10

Day nine was a write off, as was Day seven as I said in my last tread report. It has been a challenging week on the #spoonie front.

Instead of increasing my session length by one minute each day from Monday, I instead increased by two minutes on Wednesday and again today.

Stats: Nine minutes at 3.1mph – 0.44miles in total. I did a very light jog for the first two minutes, which felt good, and the usual walk for the remaining time. I’ve also had a wee stroll up to the top of my road and back today, as I did on Monday. I hope I don’t pay for it with a painful night, as I seemed to on Monday!

x

Treadmill Tales #5 and #6

I completed my treadmill ‘5’ at 11 this morning, clocking up the same stats as on the previous five days – 0.25 miles at a pace of 3.1mph. Slow, slow, slow but I know it’s the way I must go! Again, I enjoyed being on the treadmill on Saturday and this morning. I felt it in my knees, the left of which took a huge whack in a fall last November, today. Falls are part and parcel of my ‘spooniness’, and I’m most prone to them when stressed, rundown or insufficiently pacing. The knee issue this morning may be down to the timing of the ‘tread sesh’, those last week occurred in this afternoon or early evening, it may have been due to the pain and stiffness that are felt especially on waking and for some time afterwards, due to Fibromyalgia.

I made myself laugh while ‘treading’ on Saturday, just after writing this post, as I suddenly remembered a host of other achievements I could have listed. It cheered me anyway to remind myself of what I’m clocking up.

Sunday is a rest day – no treadmill on the plan – which was just as well as it became an ‘enforced rest’ day as it turned out. My mood was somewhat impacted, which is always a worry, and my mind was bothered at turns by grief, memories and new understanding. The latter is welcome but can be painful, often very, and is difficult without ready support.

Getting my s*it together, as I believe is the expression, and publishing a post!

WordPress¬†loves to remind¬†me how many posts I’ve drafted but not published. I know this, dear WordPress, it’s not for the want of trying. Today, I decided that I would prioritise writing a¬†complete post AND publishing it, over just about everything else.

My current situation is so complex and there are so many things happening that it’s impossible to explain it in a few lines, even though writing¬†about it and sharing that writing is very helpful to me. Doing so takes a lot of time and even more energy, and ‘spoons’, that’s chronic illness shorthand for energy and ability to function, click the link for an easy explanation), are currently in very short supply.

Yesterday, I managed to shower and dress in order to be ready to answer the door to receive a delivery from a parcel courier. I have had to force myself to allow ‘Pharmacy Bob’ (who I’m certain is the antithesis of his more famous namesake) to see me in smelly dishevelment but fear negative judgement too much to ever make a habit of it with others. Afterwards I had to get back into bed because I was so physically depleted by chronic fatigue and pain. I longed to be productive, there were things to do, so much I wanted to do; it was a struggle to limit the impact of my lack of capacity on my mood. I managed to get a bowl of¬†cereal and kept hunger at bay for the rest of the day with dry crackers, risking a flare up of a painful stomach issue that occurs if I get too hungry. That seems to have been triggered when struggling so much last year I went, at worst, eight days surviving on only sips of water. (I ended up in A&E some weeks later with urinary retention, a complication thereof, which is, I discovered, a medical emergency.) I didn’t sleep after my return to bed, despite having only managed a little over three hours the previous night, but I rested and by evening, had at least the capacity to watch the BBC¬†Question Time election special and engage in some lively political ‘repartee’ on Twitter, as it aired!

I’m aware that to some people that much of this post could sound like I’m moaning, feeling sorry for myself, demonstrating narcissism, or focusing on the negative. Actually, anyone really getting to know me understands that I am relentlessly positive and also hugely enthusiastic about grabbing life by the horns and making the most of it. Call me a snowflake, but sometimes it hurts to be thought of as otherwise.

We so often shy away from hearing difficult stuff, we hyper-focus on the positive, often because we realise the difficulty or horror of something, and perhaps that a positive outcome may not be possible, and sometimes we don’t know what to do or we can’t deal with that so we shut it down, don’t really listen and we fire out the positive platitudes.

I love blog comments, tweets and interactions in general. I really do. I love hearing from you.¬†Please just don’t tell me to be positive, if you’re tempted, even though I know that you mean well. If you want to be supportive, hear me. Tell me that you understand that I’m facing grim circumstances. Tell me that you appreciate my determination to try to keep going. Offer help if you’re able, and I appreciate¬†capacity for this can be limited in all sorts of ways, anything from a friendly word on a¬†postcard, a poem or a film you think I might love, or a chat to a ‘care package’ or a visit. I’m fighting the urge to delete that last line – and I’m going to leave it there however uncomfortable it makes me feel, the reasons for that are for another post.

I’d woken, yesterday, with a very red, swollen and itchy face. It’s the second time that’s happened in the space of a month, but it hadn’t ever happened prior to that.¬†I’ve had eczema, relatively mildly, since I was child, although as a child my family didn’t recognise it as such. I was screamed at when I scratched, punished¬†if I dared to get blood on my nightclothes or bedding, and asked if I had fleas. It’s only really been in the last few years, since I entered my forties, that I’ve begun to experience¬†severe episodes of eczema, at first on my hands, later on other parts of my body, and then on my face, particularly around my eyes. At first I assumed¬†that this month’s¬†sudden flare up was eczema, only the worst to date. The skin was red, itchy, and a little scaly. The area around my eyes was also puffy and swollen. I used¬†the usual emollient treatment for eczema but it burned and felt sore. It took several days for my skin to begin to settle and clear up. The episode that began yesterday got me thinking. Severe redness and swelling/puffiness were the main issues, the majority of the area was not itchy and it isn’t scaly. I suspect I’ve developed an allergy to a skin product that I’ve happily used for some time, and is in fact the only thing I found that actively helps to reduce the impact of my Acne Rosacea.¬†(Yep, I’ve got that too. Apparently, chronic conditions like to party together.) I’ve only used the product twice recently, the night before the two reactions. Phooey! I would get it checked out by a doctor or a pharmacist – but getting to see either is an issue just now, one that I’m working hard to surmount – more on that, again, in another post.

My fingers are also being attacked by pompholyx, and feel as though they’re getting more raw and painful to use by the second. I also have the more usual eczema on the rest of my hands, although that flare up does, mercifully, seem to be easing. Added to that I’ve had a infected thumb for a few days, and I’ve had an extensive flare up of something – again, I think this is eczema – on my neck and chest for several days. My skin is a rebellious teenager – raging out of control.

My ‘spoon count’ is¬†generally very low just now because a series of challenges including bereavements, divorce, low income, the emergence of Post Traumatic Stress Disorder – involving flashbacks, dissociation, nightmares, depression and¬†suicidal feelings, and the absence of sources of support. These have left me unable to maintain the rigorous regime of self management that keep me ticking over as best as I possibly can while still living with chronic illness – that’s ongoing¬†illness for which there is no cure – it’s not my fault I got it, it’s just something that can happen to people. I’d barely been near a doctor bar the odd routine visit until it happened to me, then suddenly my medical notes looked like War and Peace in triplicate. ¬†Chronic illness can become acute and be life-threatening, often it’s debilitating and life-altering. It may not kill you but it can decimate your life. ¬†My self management regime includes physiotherapy exercises (very many ‘reps’ per day), graded exercise, diet management, medication, meditation, and a lot more. Without that rigorous regime, and with added stress, difficulty, lack of available support etc, the conditions flare up and begin to rage. It’s fair to say that I’m far from at my best just now … she said in the best tradition of understatement :-D!

Today, I’ve managed to shower and dress in order to receive a further package. Beyond that I’m prioritising this blog and keeping in touch with friends online because isolation is a major issue just now that’s jeopardising my safety. More on that too in another post!

Taking a break just now to nip the loo stole another a ‘spoon’ because, as is often the case, I needed¬†to clean it due to the, shall we say, explosive emissions associated with the condition Bile Acid Malabsorption. Sometimes I leave it a while, when just getting to the loo was challenge enough, sitting on the fear that someone somehow will want to use it in the meantime!

I have no compunction about discussing¬†toilet ‘doings,’ pain, ‘oozings’, ‘leakages’, ‘blisterings’ and boils, despair, compulsive binges and skin picking, and¬†urges for self destruction; I make no apology for doing so.¬†That’s not to say that it’s easy to do. It can be really difficult because you’re often met with negative judgement and a lack of empathy. It’s not the most fun when you’re positive, enthusiastic and determined in the face of adversity, hearing that you’re lazy, boring, narcissistic, not trying hard enough or ‘milking’ the system …

I believe that education, communication and understanding of experiences outside of our own are vital to society, and speak and share accordingly.

I need to have something to eat today. I can make a bowl of¬†porridge, but if I want to eat more than that then I will have to cook more extensively. I have the ingredients to make a veggie chilli ‘non carne’, but it will require a lot of ‘spoons’. I hope to have a phone chat with a friend later. I also hope to manage to do a load of laundry and ‘reboot’ (empty and reload) the dishwasher. I’ve yet to have a drink (Edit: I’m drinking a cup of tea as I do a final read through) and, much to my discomfort, I left my bed unmade to save a ‘spoon’, but finally I have something to publish, and another step on the road to telling my story has been made.

This has taken longer to write and waaay more ‘spoons’ than I hoped. Even telling you where I am just now, with little mention of how I got here takes an age. Arrrrgh! Admittedly, fear of people not ‘getting it’ probably does lead me to say more than I need.

Thank you for reading, I really appreciate it. I hope to continue with more frequent, shorter posts. Things are happening. I have a lot to say! x

 

Jack Monroe has given me, as a survivor of abuse, a freedom from fear and I really want to thank her.

I have never wanted to devour a recipe book. I don’t suppose they taste too good, do they? I have owned and perused many a cook book from slim guides to hefty tomes, by the lesser known and the ‘celebrity’ chef, offering everything from simple suppers, one pot dinners, veggie delights, vegan cooking made easy, low fat, low stress … low fun. No matter the brilliance within those pages, those books couldn’t excite me.

I’ve never found cooking in any way thrilling despite being far from devoid of enthusiasm generally (I’m something of a jump up and down,¬†beam broadly and¬†talk the hind legs off a donkey with great passion on many topics, type. Enthusiastic hardly covers it.). I do enjoy food. I’m mindful of the importance of healthy eating. I don’t want to rely on processed foods and have often wished I had a love of cooking from scratch.

My lack of excitement for cooking, stems from a lack of confidence rooted in an old fear. I recall the swipes, slaps, pokes, verbal batterings and other punishments that accompanied the cooking of my upbringing. Nothing I did, in learning to cook or otherwise, was ever deemed acceptable. I’ve worked hard to build self esteem and confidence, but my relationship with cooking remained affected. Perhaps because it’s such a fundamental skill, and I was for so long deemed incapable of even that.¬†I instilled my¬†ex-husband with the confidence to learn to cook, and mentored his efforts – planning menus, gathering ingredients and lovingly encouraging. Still I cooked without enjoyment, with a lot of fear and to no more than a basic level.

The blog, devotedly largely to cooking on an impossibly tight budget, I found at agirlcalledJack.com¬†caused something of a stir. I refer not to the stir in the media or in¬†a bowl filled with a magical mix of low cost kidney beans, a square of dark chocolate, tomato puree and a pinch of cumin. This was the makings of a stirring deep inside of me (ooer – I have heard tell that food can do that to some folks). ¬†Instead of wishing that I could tackle these recipes, that I found I was avidly reading, or feeling that I ought to tackle them; I started to find that I wanted to tackle them. Soon I found that not only did I want to tackle one or two basic budget recipes, I wanted to tackle quite a few. Then came my first encounter with¬†A Girl Called Jackthe book* …

I devoured it in one huge gulp, reading from cover to cover with mounting EXCITEMENT. I wanted to make these things, because they excited me and because, finally, I felt I could. Then, after cooking one day, I found myself thinking¬†I enjoyed that,¬†then it happened again … and again. Now I look forward to cooking and it seems I enjoy it every time and best of all the fear has gone and in its place is a growing confidence.

Jack, I can’t thank you enough for that.

I’m never going to be contestant on the Great British Bake Off. I haven’t baked consistently since the cookery lessons of my school days of the 70s and 80s. I have baked since then but with fear, little success and more than a dollop of self-judgement. Last week * wait for it * I made a banana loaf. No, really, I really did … and bloody good it was too! I searched the terms ‘easy low fat banana loaf’ and came to this recipe from the BBC Good Food website – a site I believe also inspired you, Jack. I have to say that if I can successfully complete this recipe, anyone could, but boy did I enjoy making it. I positively revelled in it. By the end I might as well have conquered Everest, such was my sense of accomplishment and new found baking confidence. I’ve made it twice more since and, thanks to a gift of some apples, next week plan to bake Jack’s Apple and Cinnamon loaf.

A slice of MY banana loaf to sustain me as I write

As someone who lives with a number of diagnoses of chronic illness and is a¬†‘spoonie’, the amount of energy required to make a meal is of real importance. Before Jack, for two years (trying not to eat rubbish) I relied largely on expensive ready meals and ultimately, so burnt out was I, ended up living by snacking, not healthy, not good for the waistline and not at all satisfying or sustaining. My dysfunctional marriage had ended, I was continuing my extensive efforts to rebuild my life post-abuse disclosure and subsequent serious illness. I was dealing with the sudden terminal illness then death of the last person I had left who could be termed a ‘loved one’. I was studying, volunteering, making plans for self employment to revive the hard won and much beloved career stolen by the effects of abuse … and a whole lot more. Then after a final piece of devastating news it all stopped.The words straw and camel come to mind. I saw no light this summer. I stopped going out and my world closed down. Suicidal thoughts raged aplenty.

Now in dire straits financially, as a result of my marriage ending, and illness, I need Jack’s recipes all the more. My grocery shopping of late has¬†almost entirely comprised products from¬†the supermarket’s ‘basic range’, thanks to Jack encouraging me to try more than one or two. I’ve found I didn’t have enough money to buy tampons and put back food items to pay for them. Now I no longer have money to shop. Last week I was referred to a local food bank – a surreal moment and one that I’m still finding difficult to process. My first food parcel will arrive on Thursday.

My new found cooking confidence is helping to sustain me in more ways than one at this terribly difficult time. I’m sure I’ve cooked more in recent weeks than in the rest of my adult life and I’m using cooking implements that have long languished in boredom. I have a history of mental illness¬†because of the trauma and abuse I have experienced. Reactive depression has returned with a vengeance, that alone makes me feel like I’m wading through treacle. It feels good to know that I am sustaining myself with good home cooked food. A bit of weighing, chopping and stirring goes some way to distracting my troubled mind.

I fear turning on lights and as colder days approach, I know that I can no longer afford to heat my home, despite the fact that the cold exacerbates my chronic pain. At risk of homelessness, I know that without a roof over my head, cooking will be the least of my worries. I hope there is a way I can be supported to stay in the one-bed rented flat I found last year and have grown to love so much, and keep on cooking and growing.

Thank you Jack for your brilliant recipes delivered in a gentle easy manner¬†that means even the most ‘culinarily-challenged’ like me can be engaged.

I thought there could be no greater surprise than when I took up running last year (I am far from an athlete) but now … now I find I’ve added the category¬†Food and Cooking¬†to my blog :))) !

I still can’t make an omelette, despite Jack’s gentle instruction I still end up with scrambled egg. One day ¬†…

With love and many grateful thanks to you Jack xx

*Thanks also to Jack for the introduction to the Hive, buy books online and support vital independent booksellers at the same time. Click here to buy any of Jack’s books – no, I’m not on commission ūüėČ !

Dancing to the tune of the spoon – Part One

N.B. You might like to read this post before reading on here. This was posted out of order due to a WordPress glitch.

 

I’m a ‘spoonie’. I identify with the way of life described in the Spoon Theory.

It’s an engaging and enlightening¬†piece of writing¬†by writer, speaker and advocate, Christine Miserandino. She coined the Spoon Theory in order to try to explain to her best friend how it feels to live with chronic illness – in Christine’s case, Lupus. Christine also devised the website butyoudontlooksick.com to provide support to people living with chronic illness and to raise awareness of these life-affecting conditions that are often not readily visible from the outside.

In terms of illness, chronic means persistent or constantly recurring; long-standing and incurable.That doesn’t necessarily mean the illness will prove fatal, although with¬†some chronic conditions that’s possible, but that it cannot be cured and will endure. Chronic illnesses are life-affecting and often¬†debilitating. Like people they’re individual and can affect different people in different ways.

I live with seven¬†chronic illnesses and conditions. I’m not greedy – I’d gladly be rid of them all but it seems chronic conditions are social beasts and where one goes, others often follow! My pack affect me in many¬†different ways.¬†Like Christine, I can never forget that I’m a spoonie but must instead learn to live my best life … with spoons.

I’m driven; I believe in grabbing life by the horns. Be sure that when you come to die that’s all you have left to do is a favourite mantra. I find it difficult to slow down, pace myself and hate to have to miss out on things. As Christine says in the Spoon Theory, you can run errands or you can cook dinner. You can do something fun, clean your home or do some chores but you can’t do them all. You have to choose. You have prioritise. You have to accept your limitations. I want to grab every opportunity but life with chronic illness doesn’t quite work that way…

Coming up: My spoonie choices 

Operation Fight Back: Day 18 – Part Two and Day 19

The last couple of days have been … well … momentous is probably the word for it! There are several reasons for that, here’s more about two of them.

Yesterday I had my first job interview in a loooong time … and I survived ūüôā . It’s a post in mental health, just four days a month or thereabouts and an opportunity that I will grab with both hands if I’m offered it. My fingers are crossed.

Today I had my second appointment, in as many weeks, with my new GP¬†(she is actually about to go on maternity leave so another change is on the cards). It was possibly the most satisfying – that’s perhaps not quite the word for it but I’m struggling to find another just now – appointment I’ve ever had. I’ve had chronic physical health problems for 15 years now. I’ve received diagnoses along the way but they have mostly either been vague or just plain inaccurate. Still problems remained, much was unexplained, and the impact on my quality of life was profound. I am an admirer of Christine Miserandino Donato author of the rather magnificent Spoon Theory¬†. It’s an engaging read and explains well the realities of living with chronic illnesses like Christine’s and my own.

In the last three years despite being told that my suspected conditions are not progressive, I have gone on to develop many more symptoms including hair loss, further pain, dizziness, vertigo (having the sensation of motion although I am still) and skin problems. I have long thought it possible that I have an underlying autoimmune disorder. GP today agreed, ordered a battery of tests and referred me for an appointment with a specialist. I was quite honestly flabbergasted … I didn’t even have to beg!

I am not delighted to have to undergo tests and attend further appointments; I don’t want to be ill. The fact remains that I am experiencing illness which severely compromises my quality of life. I hope that at last real answers are on the horizon and I’ll no longer be left to live with it without knowing what is happening to me or having any idea of the prognosis. It’s also nigh on impossible to get any kind of financial support without concrete diagnosis (even then it’s far from easy).

It’s well documented (here’s an example) how physical health can be overlooked or sidelined in people who are experiencing mental illness. Indeed, during the worst of my major depression I lost count how many times I heard ‘oh that’ll be down to your depression/anxiety’; after recounting symptoms. Those symptoms were actually due to bile acid malabsorption, not related to depression or anxiety, and it was reading this article¬†back in 2010 that finally ended a decade of crippling symptoms that had left me barely able to leave my home.

***

Yesterday’s treadmill stats: (no run today due to very early start for appointment at surgery. I actually felt a bit bereft at not being able to run; that’s not something I ever thought you’d hear me say!)
13mins 19 = a run of 11mins 19 (my longest yet) – 0.78 distance (furthest yet) and 70.9cals (highest yet)