Entering the ogre’s lair …

Don’t get me wrong, I’m not calling my GP an ogre, he’s surely a nice enough chap, but after the events of last year, going to see him again was about as scary as standing before a ravenous ogre with a particular taste for ‘Hearts’ about my size and shape.

The only available appointment was at 10am. Any appointment before 11 always presents additional challenges because my morning routine is lengthy due to the requirements of my Bile Acid Malabsorption and also issues around sedation, pain and mobility that are particularly problematic when I wake. I made it past those, and past anxiety around getting out for the first time in four months – too complex to detail.

‘Debriefing’ afterwards, my advocacy worker, who accompanied me, commented that there was marked difference in my GP’s response to my discussion of my mental health and of my physical health. He said nothing in response to the former. She said his expression could’ve said … well, what do you want me to do about it? By contrast, presented with physical symptoms he leapt into action, examined my abdomen, listened to my chest and took my blood pressure … twice. He ordered tests, including an E.C.G. and prescribed several medications, and appeared thorough.

Discussing a gastric issue, I described my symptoms and said that I’m aware that my weight gain may have caused them or at least be a contributing factor. He agreed, said that I was right and that it would help if I could do something about that. I didn’t pick him up on it, and perhaps I should have done. I did feel disappointed, if not a little angry, given that I have an eating disorder and that I asked for help – clearly and directly – so many times last year and yet I received none. I understand that he cannot ‘magic resources out of thin air’ where services have been reduced or cut, but I really would appreciate an acknowledgement both of much I am trying to help myself, and that I haven’t been offered any help or support. My weight and related issues will be being discussed when we next meet and I hope then to have the confidence to say that.

I’ve blogged and tweeted recently about my ‘flaring’ skin. A first episode occurred around five or six weeks ago when I woke to find my eyes puffy and my skin reddened and itchy. I suspected eczema but noted that the usual emollients gave me a burning sensation. It was annoying and didn’t look great but it wasn’t horrendous and it cleared up after a few days. A couple of weeks later I had another episode but this time the skin around my eyes was more swollen than puffy and I suspected an allergic reaction, but I couldn’t pinpoint what might have caused one. On Wednesday last week I woke again to a red face and swollen skin around my eyes. Like me, my GP suspected eczema or an allergy and he prescribed hydrocortisone cream.

In the hours after my appointment, my face became increasingly red and a little more swollen, by the evening it was burning which felt very unpleasant and was difficult to manage. The following day I awoke and gasped in shock when I looked in the mirror and saw that my whole face was swollen. I could barely open my right eye and the left was also affected. The areas where I’d felt the intense burning sensation – mostly around my mouth and under my eyes – now felt very tight and had become extremely dry. I was able to speak to my GP on the phone later that morning and he opted to additionally prescribe an anti-histamine and a specialist moisturising lotion. All of the new medications were delivered on Friday evening by the delightful ‘Pharmacy Bob’, who was concerned about me, with my bright red, ballooned visage. The swelling slowly reduced over the weekend and the redness decreased somewhat, then my face began to peel, everywhere but for the top half of my forehead and the sides of my face, and continues to do so. I have been liberally applying moisturiser and, thankfully, today when I had to go out to an appointment with one of the practice nurses, it looks better than it did.

I have some concerns about the cause of this skin issue related to my other diagnoses, but I’ll blog about that once I have the results of the tests that the GP has ordered.

I asked my GP if I might return to using my treadmill as I want to do, promising that I would not try to run before I could walk. I am MUCH heavier than I was when I took up running in 2014. I have no idea what I will be able to achieve this time around. Building up to being able to do a brisk walk will at least help me to lose weight, it may be that I will not be able to run until I’ve done so. I wondered if I might be advisable to wait until the tests have been carried out, but the GP said that he’s happy for me to start before that, so long as I’m careful.

 

Enforced rest vs chill out time

I’ll make this quick for reasons that will become apparent. I wrote yesterday about putting myself into ‘Standby’ mode.I realised that I could’ve done a better job of explaining that after people told me to enjoy my rest and relaxing time, and that I’ve earned it. 

I’m not managing to do a great deal this weekend and I’m mostly lying about in bed. If you have a busy life working or parenting or whatever, then that might sound like an attractive proposition. However, I’m not happily ‘chilling out’. I’m stuck in bed because my body isn’t capable of doing much else at the moment. It’s frustrating, dull and impractical. Alas, it’s not fun. 

My symptoms are numerous and can vary wildly at any given time. This weekend’s particular version of ‘standby’ mode essentially involves feeling really ‘shite’, due to nausea, pain, palpitations and breathlessness, and with fatigue, some unsteadiness and blurred vision –  all part and parcel of my ‘spoonie-ness’ – and having to lie still to keep some horrible symptoms under some control. 

Screen/online time offers good distraction and company but can also exacerbate symptoms so I have to try to find some sort of balance. Lying down in a darkened room with no distractions or contact would help my body but would drive my mind insane. My mental health thrives on action and productivity. I have to somehow come up with a kind of happy medium. 

I’ve still got to do some things like eat and wotnot but that’s anxiety provoking because I don’t know how much attempting to do those things will exacerbate my symptoms. Sometimes I’ll be afraid to try, sometimes I’ll plough on regardless – sometimes I’ll get away with that, sometimes I’ll pay a heavy price. 

That all sounds so negative which makes it very difficult for me to say, but if I try to hide from or ‘sugar-coat’ the realities of chronic illness then how are people going to gain a better understanding? 

I am still … mostly … smiling :). My mood hasn’t plummeted as can happen when the body is struggling so much. I have hope that a better day is around the corner. To be honest, although I know it’s a possibility, I don’t think about the prospect that one is not as that would sure as heck make it more difficult to cope. 

Back into standby mode for me then and managing to do what I can in this ‘spoon drought’. 

Thanks for reading. Comments welcome as ever. 

Heart x 

Making the leap

I’m almost surprised that the cogs of my brain can’t be heard clanking with all the wrangling, wracking, worrying and wondering that’s going on in there. 

Momentarily inspired, I’ve just jotted a few suggestions under the title of that third listHow Do I Get From One To The Other? 

  •  with the help of the local advocacy service 
  • by knowing my rights
  • by recognising my worth
  • by being helped to assert my needs and secure ways to have them met
  • by learning to be confident that I an deserving regardless of how some have acted as though I was not 

I can be very assertive and can advocate for the world and his dog, but the effects of abuse and trauma impede my ability to do it for myself. 


Driven to distraction before languishing in limbo

Distraction was the order of the day yesterday. I’d slept well on Thursday night and woken feeling relatively refreshed, but I soon began to feel decidedly uneasy.

I knew that I was troubled both by having posted this the previous day and by having emailed an acquaintance to ask if she might possibly visit me and help out with a few chores. I felt increasing guilt and shame, and a rising sense of that damn fiend, terror.  

I took my digestive meds, ate some generic ‘Weetabix’ and caught up with some undemanding telly. While watching the new series of MasterChef, to keep track of who’s who, I gave contestants names such as Ms Bullock (when she smiled she reminded me of actor Sandra), Mr Citrus Chicken (his dodgy dish), Ms Berry (a dab hand at baking), Mr Rochdale and Mr Experimental. 

With terror still making its presence felt and preventing me from doing anything useful, I let myself fall asleep and napped for a couple of hours. I woke after a series of dreams, in the last of which I was having a heart attack.

Despite the anxious dreams, terror seemed to have slunk away while I slept. I ventured into the kitchen and made some Porridge Berry Bakes. They’re quick and easy to make and are a healthy way to satisfy a sweet craving. (Thanks are due to the person who shared her recipe on a Facebook group dedicated to eating well on a budget.)  

Beat two ripe bananas (mashed) with two eggs and some vanilla extract. Separately, mix two and a half cups of porridge oats with some cinnamon and one and half teaspoons of baking powder. Now mix everything together then add one and a half cups of milk (I use skimmed cow’s milk, soya, almond etc also work). Divide the mixture into greased muffin tins (or silicone if you prefer) and add your berry toppings of choice (I used blueberries, as my photos illustrate). Bake at 180 for 25-30 minutes. N.B. Choose a non-diary milk and replace the eggs with another banana for a slightly more dense but vegan-friendly cake. These are good for children’s lunch boxes, or so I’m told.

Porridge Berry Bakes ready for the oven
Porridge Berry Bakes ready to eat

More MasterChef came later and the appearance of Ms Pastry, Ms Cabin Crew, Ms Muddle, Ms Sour and Mr Bland among others. I also spent time reading the memoir of a woman who took her fight for ‘the right to die’ to the High Court

I was determined that today I would work on part two of that significant post (if you’ve been keeping up then you won’t need the hyperlinks 😋) . I also needed to think about how on earth I might proceed from here. I’m a dyed-in-the-wool planner. I’m never without goals and plans of action, at least I wasn’t until now. After much brain-wracking and head-scratching, I felt as though I was languishing in limbo.I had no bloody clue what to do. Terror still lurked and threatened to pounce, somehow I kept it at bay. Somehow, slowly, very slowly at first, I started to write. I made two lists: What Does My Life Look Like Right Now? and How Should It Look? Alternative titles might be Existing vs Thriving or Deep Crisis vs Getting Better. I titled a third list, yet to be written, How Do I Get From One To The Other?  

Successful Scribbles

After a catch up with an online buddy and a few cups of tea, I wrote part two of that significant post, ‘Bullets 2016’, roughly in the order that they hit! From there this post began to take shape. While I was writing, an email arrived from the acquaintance I was worried about having asked for help, happily agreeing to do so. When you’ve nowhere to turn and you’re left having to ask for help from people you shouldn’t really be asking, the guilt is enormous … at least it is in my case. 

I don’t know the way out of all this, a few days before I found the strength to start blogging again I’d have felt the way out would be ‘in a box’. Now I only know that I think that writing is key.  

I’ve just re-read my post Silence Is Not Golden, for the first time since I published it. I’m surprised to find that it’s not quite so together as I felt it to be as I wrote it.Although it’s accurate and my story, it’s almost as though someone else wrote it, and that feels a little disconcerting. By contrast, as I’ve written this post, I haven’t felt as though the words were almost writing themselves nor as though writing was akin to pulling teeth. I just feel like me, writing  What that all means, goodness only knows. 

Silence Is Not Golden

I’m waiting for Bob, the smiley man from the pharmacy, to deliver my weekly package of Fibromyalgia medication. Only he’s not so smiley anymore; instead he looks both disconcerted and slightly disgusted, faced each week as he is now with my shambolic self; undressed, unwashed and sometimes smelly. 

I automatically summon a smile and good manners, but with my increasingly poor dental hygiene and dead-eyed dissociation neither can offer much reassurance. 

I’m unsure as to whether it’s a fear of intruding or an absence of community spirit that prevent him, in recognition. of my dramatic deterioration, asking if I am OK or if I need anything.

Weeks ago I couldn’t have dreamed of answering the door, allowing someone to see me in such a state, with Bob it’s become the norm. 

His deliveries have always taken only a moment or two, perhaps because in this largely ‘permit-only’ zone, he is parked on double yellow lines below, or perhaps his speed merely reflects efficiency. I’d guess his age to be beyond that of average retirement. He has a handsome, healthy appearance and sprints up the stairs to my second floor flat with the ease of a teenager. In the wake of my escalating disarray, he’s shaved seconds off his time. 

I did write for several hours on Sunday and into Monday, working on that significant post, mentioned here. I am trying to tell the story of the past year. It looks as though it’s to be set out in two parts, with the first giving background, context; setting the scene. The second a planned to be a bullet pointed list giving details of each trauma as they came, in rapid fire succession. 

I’d have said perhaps that each bullet left clear entry and exit wounds. They passed through and I carried on, like cinematic villains or monsters that just won’t lie down and die, but continue to advance while riddled with bullet holes. 

Now, I wonder about the impact of those bullets. I see now that they must have torn me apart inside  I knew I had been hit, repeatedly. I didn’t ignore it and I did ask for help … repeatedly … but none came. 

I think I was shattered. I realise I was silenced as surely as though a bullet had sliced through my vocal chords.

Bob has just made his delivery, the door is locked once more. My focus is now solely on completing this piece of writing, catching the words as they flow. 

I know that it feels good to write like this – as I couldn’t for so very long. Writing for me is like receiving a life-giving blood transfusion. I’m not sure I can assess the quality of this writing but it feels very good! Instantly I fear that must mean that it is in fact far from that. Yet it’s as though I’ve tapped into a natural spring that flows with exuberant ease. Clear. Fresh. True. It flows, seemingly without effort, almost certainly without strain. 

It’s as though it has to be written, would write itself if it could, and that I’m merely a conduit. Except I am connected to these words, they are telling my story.

On Sunday the pace of progress was rather more sluggish. The flow murky and stilted, like a tap turned on for the first time after the supply has been turned off, to allow the water company to attend to a burst pipe.The cloudy flow splutters, disgorges a flurry of debris into the sink. The tap-turner’s nose wrinkles in distaste.

I found the writing process increasingly stressful. I couldn’t tap into the feelings associated with the traumatic events of the past year without experiencing increasingly acute distress. I determined to press on feeling that this work was vital, the key to progress. I felt that if I could find the words here then, perhaps, I could find the words out there

With ‘part one’ nigh on complete, I reviewed and edited it until I could take no more. I wanted to publish and see the achievement of at least 50% of the task completed, but something held me back. The words felt forced, although they were not inaccurate, they did not feel true. Perhaps that makes no sense? 

The fog was closing in again. The clearing where I’d stood while I blogged for those few days last week, swallowed up. I was left with only terror and desolation for companions. I imagine their laughter deadened by the cloudy cloak but still perceptible. They roared at my gullibility, my willingness to hope that there might have been a way out. 

I soon as I try to write or speak about the trauma of the past year, the flow becomes stilted and murky, and then it stops. 

I was schooled in silence. As tools of the trade go, it’s pretty essential to an abuser. Without it they must rely on apathy or disbelief on the part of anyone hearing, or else they themselves must rely on the tool of discredit to save their skin. When the reality of my family life was finally disclosed, well into adulthood,  to a locum GP, the only one to act on suspicions, and with the gentle telling that followed that this was abuse and I didn’t have to live like that anymore, I knew. I knew that I had to learn to open up, that to begin to heal I had to tell. I did so. 

So, last year, I kept going, bullet holes and all, until a small event on the 13th of February this year (I’m not superstitious, the date is purely coincidental) became a monumental trigger. 

Having concluded that I should hold off publishing ‘part one’, on Monday this week, an hour before I was due to receive a visit from my advocate I sent a desperate, terror-fuelled email cancelling my appointment. I was and remain petrified of the consequences of speaking out. I’ve lost count of how any times I’ve cancelled in recent weeks. 

All I can say now is that among the traumas of last year was an incident in which I disclosed significant trauma and detail of significant risk to myself to two trusted professionals. I was not believed, and lies were told about me. I was not treated with respect but rather with contempt. I was mocked. I was refused support. I was left sobbing like I’ve never sobbed before, traumatised and feeling dirty in a way that I hadn’t felt since the abuse that occurred within my family.

The whole event had an element of the surreal about it. It was such an appalling abuse of power, a disregard for professional standards and duty of care.so shocking, that it was difficult to take in that it really was happening. To make matters worse the incident happened in my own home, the only safe one I’ve known. 

I don’t know how I’ve managed to write parts of this post. I can feel both shame and terror lurking, waiting to pounce the moment I hit publish. 

ULTRA Jigsaw

The experience of trauma, particularly abuse, can fragment a life, and a person.

The process of recovering could be likened to tackling a jigsaw or crossword puzzle, the number of pieces or the complexity of the clues individually determined, as each individual’s experience of trauma is unique. Recovery too means different things to different people and can take many forms.

My recovery jigsaw is complex. I opened the box and tipped out 1000 puzzle fragments to be painstakingly pieced together. A combination of original and replacement pieces may be required if some are missing or too damaged to use. Rogue pieces may thwart progress appearing to fit in one place while their true location lies empty elsewhere.

The pieces are vulnerable …

The goal is a correctly completed puzzle, a myriad pieces picked up and put together to reform a whole. 

*****

Life as I knew it blew apart as surely as though a bomb had detonated within it. I lost my family, friends, my career, my health, and any semblance of normality. I was 30 years old. Subsequently, I almost lost my life too.

In the years immediately afterwards I met a woman, I’ll call her Eartha, at a community art project for people experiencing mental illness. My diagnoses then were Depression, Generalised Anxiety Disorder and Agoraphobia. Latterly my symptoms and experiences have been neatly bundled under the term ‘Complex Trauma’ which, as I understand it, is variously described as Complex PTSD (Post Traumatic Stress Disorder) or Complex Trauma Disorder.

I don’t remember much about Eartha’s particular circumstances but I do remember asking her how long it had taken her to get her life back on track. 10 years, she said. I did a double take, stepped back in amazement, sank into a dramatic faint, and just about every other astonishment cliché you might name.

I jest, but I was truly horrified. NO WAY was it ever going to take me so long. My career, dreams, passions, and goals -none of which were inconsiderable – were waiting, and they were becoming impatient.

I’m now approaching 50. Never in my wildest nightmares did I imagine that almost 20,

years later, I’d still be struggling to compete that puzzle and stride forward into life again, much less that I’d yet again be fighting for my life.

This, is ULTRA Jigsaw: The Epic Endurance Event! It’s set to test my mettle, as though the original trauma weren’t challenge enough.

 So, why has it taken me so long?
Am I just slow and lazy?!
I’m actually very proactive, determined and driven.

I think the answer to the question of what’s taking so long is threefold.

I’ve been rebuilding my life on quicksand. I don’t yet have any firm foundations but that’s not for the want of trying. For a number of reasons, I’ve  lacked reliable consistent support. Mostly I’ve had to go it alone. The scale and complexity of the task itself is problematic. 

I was abused for decades.I lived in a situation of recurring trauma for more than 30 years, and then spent more than a decade in a damaging marriage on top of that.

I’ve been ‘free’ for just three years. 

I imagine that someone reading this might wonder why on earth I didn’t get out sooner. There is no quick answer but if I’m able to tell more of my story it will become clear. 

To be continued …

A new group … or Day 5 of The Rest of My Life

Today has been particularly challenging. I’ve been reeling from big news that I received yesterday. It’s triggered the pain of loss and exacerbated intense feelings of loneliness.

I woke very early this morning – sometime around six o’clock. Realising that I wasn’t about to get back to sleep easily, I set about being productive and wrote a blog post. Still the difficult feelings persisted although I continued to be productive but carefully pace myself, and also took time to relax. Around lunchtime, feeling worse, I took myself off to bed, in the hope that a nap might help. Sometimes it’s the only option to try to halt a complete mood crash and descent into crisis, when no support is available. I slept peaceable enough and woke around 3:30pm, at first slightly disorientated. My mood was still flat.

I knew what I must do and that is be productive again. I set the dishwasher going, refilled my water jug, took some painkillers, tweeted the link to my earlier blog post, brushed and straightened my hair and put on some make up before sitting down at my desk to write this post and send a couple of important emails.

I’m due to go out in a little over an hour. I plan to try out a local craft group. It’s held a short walk from my place, lasts just 90mins and there’s free tea and cake! I am so isolated and the more I can engage, #spoons permitting, the better. I am anxious about going along. My comfort zone is to be on top form in the company of others, which, in my situation, is quite frankly exhausting. The aim this evening is just to get there and try not to put myself under pressure to perform. The aim is to make that effort but not strain myself. After all, this is supposed to be about getting fun and engagement into my life!

Wish me luck!