Mind how you go!

Mindfulness: It’s quite the buzzword these days and is touted by some as a cure for many ills. Is it worth the effort? I think so.

My first foray into guided meditation, sometime in 2011, is etched on my memory. Andy Puddicombe had the perfect analogy for what I thought of as my horribly ‘busy head’ … cars on a motorway.  There I was caught up in the maelstrom of the traffic, trying desperately to direct it and, at the same time, risking being mowed down.

Andy taught me that I can safely get off the motorway, that it’s possible to take a step back, that those cars can carry on speeding about but that I need not be in their midst.

Earlier ‘dabblings’ with relaxation ‘tapes’ (that long ago, yes) and CDs offering meditative exercises rather left me cold. I needed a guide to follow but found the voices grated and put me right off. Andy’s is a voice with the power not only to guide but to soothe, calm and assure me, all while sounding like he’s speaking only to me.

I’ve been a poor student, often distracted from my practise. Frequently I’ve resisted it for fear of having to face head on the horrors of grief, loneliness and Post Traumatic Stress Disorder from which I was trying to distract myself to avoid being completely overwhelmed. I had lost of sight of the knowledge that mindfulness meditation can reduce rather than exacerbate my stress.

After a very long gap, I’ve tentatively begun to again make a habit of meditating daily. I’ve completed eight or so guided meditations, of either 10 or 15 minutes each, in the last two weeks. By the end of this afternoon I plan to have clocked up a consecutive run of four days. It’s early days! Meditation, and generally ‘being mindful’, do take practise. The more you do it, the more you benefit. It’s not difficult, not really. It takes some commitment and gentle effort.

I’m already reaping the rewards.

Meeting with my advocacy worker yesterday regarding the complaint we are submitting following my experience of the Intensive Home Treatment Team last year, I read my discharge letter for the first time. It contained such a catalogue of factual errors that it could have been written about somebody else. Memories of the mistreatment I received from some members of that team and new horror at the huge errors in the letter and the impact of them left me feeling very angry, sad and anxious.

I used a specific meditation for stress last night to help me to manage my feelings. Today I’m aware that my mind is regularly running away with thoughts, worries and memories of this distressing experience. It’s haunting me. I’m using mindfulness to help me to cope and to continue to function. Each time I notice that my mind has been distracted by this, I gently guide my attention back to what I want to focus on, such as writing this post, folding laundry, washing dishes, reading, watching a film or doing my physiotherapy exercises.

I’m using it in a similar way to help me to improve my posture and reduce some of my chronic pain. For example, each time I notice that I’m hunching my shoulders, I gently ease them back to where they belong. It helps me too in many more ways.

Mindfulness helps me to take one day at a time, to be present in the present moment, which after all is all any of us has; the past has passed and the future is not guaranteed.

What could it do for you?

I love Headspace. because it’s done exactly what it says on the tin; it’s given me some space in my head. (This is not a sponsored post, I receive no benefit, nor do I seek to, if you should check it out. I’m merely sharing what works for me.)

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An update, possibly rambling!

I’m a woman on a mission on today, to crack several sticky issues, but I wanted to bash out an update here while my cup of tea is brewing 🙂 .

Social care
There’s been no word from social work since the social worker who assessed me for social care in May, left to begin maternity leave at the end of July, despite my being told that I’d be allocated a new social worker. I’ve tried to contact the service manager, my ex-social worker gave me her details as she left, but I can’t get any response for her. A form did arrive in the post two days ago, from a different department, together with a letter asking me to supply the financial details requested in order that they can determine how much to charge me. This without my having been told that I would be charged. My next task today will be to complete the form. For the moment I’m putting the question of what happens if the decided charge is more than ‘buttons’, putting social care out of my reach, because that’s too scary to contemplate right now.

I still haven’t been told who will prove the care I’ve apparently been assessed as being eligible to receive (according to ex social worker), the terms of it or when I can expect it to start. Six weeks ago, my second choice of provider had apparently said that they thought they could support me but couldn’t confirm just at that moment. It’s proved impossible to find out anything more since. Sheesh, just writing about this is making me feel weary, so it must be a bagful of fun to read too. Apologies folks 🙂 .

Advocacy
I’ve emailed the local advocacy service this morning. My advocacy worker is now only available on Thursday and Fridays and so have asked for a meeting on either day this week, in order that we can discuss the following:
– Social work/care – I’ll ask if she will phone the manager when we meet – when she phoned earlier in the year there was immediate action. I could phone but I think the added clout of someone other than me phoning could make a difference. Also, I’m already under too much stress and both my interim therapist and my inner self care monitor (!) are urging that I lighten my load if at all possible.
– Complaint re crisis team – This is covered in this post, skip to the paragraph beginning ‘In September 2016’, to read the most pertinent bit. I have just two months left to get the complaint in. I’ve had to put it on hold with so much else going on.
– GP – I’ve lost such confidence since the crisis team debacle – not helped by my struggling to click with a new GP since my one left the practice last year. Her replacement is largely ineffective and the senior partner I chose to see instead, generally patronising but also, worryingly, dismissive of my mental health and won’t discuss it. I don’t know whether that’s due to his own ‘issues’ or whether he’s been influenced by the crisis team’s inaccurate conclusions.

Health
I’ve just called to make an appointment to see a female GP at my practice, having realised that I’ve consulted three male GPs during my five and a bit years with the practice and never had a good experience with any of them! Conversely, I’ve seen four female GPs there – all but one at least several times and all of those were excellent, only the one was dreadful (older, rude and crabby) and I opted never to see her again 😀 !

My first choice is about to begin a month’s leave. I’m booked in for a double appointment with my second choice (only second because she works fewer hours) on Friday, 8th September, and have already asked if my advocacy worker can accompany me. I’ve been advised it’s worth having that support until I am settled with a new GP and until my complaint about the crisis team has been resolved.

Primarily, I need to speak to her about the new and different depressions that I’ve been experiencing, which I strongly suspect are related to the perimenopause. Despite having experienced episodes of depression for nearly 30 years, these are the worst I’ve experienced, because they are so … complete … that’s the only word I can think of to even begin describe it. It’s just MORE … than previous depressive episodes, possibly because my usual depression is ‘reactive’ – a response to a particular trauma or stressor – this stuff ‘just is’, as clinical depression often is, but with the added ‘quality’ of exacerbating my Complex Trauma symptoms. I lose all capacity for days on end and it’s as though I … Tigger, grab life by the horns, heart set on living – have left the building. I’m left entirely unable to connect to anything or anyone and actively suicidal … like never before (and I’m without support for that). It’s difficult to write about. It’s difficult to appreciate if you haven’t been there. Suffice to say it’s horrendous and I’m generally worried for my safety and very much hoping that the GP will be sympathetic and will work with me to find a way to manage this, and to get to the bottom of the myriad of other new symptoms that I’m experiencing lately, making it impossible to sustain even a semblance of life.

Time is of the essence
I’m trying to be as productive as I possibly can in the next two weeks, squeezing even more than usual out of every ‘spoon’, to get as much sorted as possible, because, if the establishing pattern continues, I’m likely to lose the next two weeks of my ‘cycle’, and spend it clinging onto life by my fingertips. Lordy, I do hope not, but I’m trying to prepare to try to mitigate the impact. The last episode alone cost me £124 in appointment cancellations fees (dentist and physio) eating up the last of my little kitty from the Journalist’s Charity, and I haven’t even got my new specs because I had to cancel that appointment too. Oh my, I HAVE to laugh :-D, while I can, it keeps me going.

TTFN. Thanks for reading.

Heart x

 

 

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.

 

Once upon a time … a tale of doctors, dastardly doings and mountains scaled.

This story begins at a little after 3am this morning. I’m going to use my tweets to tell the first part of it, covering the period up until around 7:50am.

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It took a few minutes and several callbacks to get through and then I spent a little more time in a queue, with nervousness building. The surgery receptionists are generally fierce on the phone, less so in person, but I was delighted to be answered by one who is pleasant on the phone. I’d been advised to call today at 8 to try to obtain an ‘on the day appointment’ with my GP.

This GP is new to me, I have seen him just twice to date – in December ’16 and January this year. My previous GP, also male, replaced my great GP of a couple of years in April 2016 when she moved to another city. He is, as she was, the only one of this large practice’s many GPs to work full time, readily accessible pretty much at the drop of a hat. Appointments with the rest are like gold dust, as I’m sure is the case elsewhere.

I was really keen to remain with my great GP’s replacement primarily because of the accessibility issue but it wasn’t to be. Great GP was renown for her lovely manner, efficiency and proactive approach, which very much suited me, myself Mrs Proactive. Her replacement is probably in his early thirties. He’s mild mannered and has a lovely soothing voice with an Irish lilt and was always willing to make himself available to me – with the exception of a home visit in an emergency last year. However, he is far from proactive, is reactive only after a fashion, and is prone to moaning about the hardships of his lot as a GP. Don’t get me wrong, I utterly sympathise. I know that the NHS is terribly s-t-r-e-t-c-h-e-d and I’m certain that the majority of GPs are greatly stressed and more than earn their salaries. I hope that many are wholly patient-centred. With appointments scarce and often limited to eight or 10 minutes, I think that time is for the patient not the doctor’s own grumbles.

A good relationship with a GP is vital if you’re ill, of course. This goes double when you’re chronically ill – when your illness is enduring and you often have complex needs. Health impacts beyond the mind and body, lives can be disrupted even devastated by health problems. In the UK, GPs are the gateway to all other services within the NHS and are also generally necessary to the process of obtaining things such as welfare payments and social care – both of which have also been subject to budget cuts and as a result are increasingly difficult to obtain. There are no guarantees of need being met. A good GP in your corner is a wondrous thing.

I’ll write in another post about how I’ve been unable in the last year or so, to obtain NHS support and treatment in the form of physiotherapy, trauma therapy, treatment for an eating disorder and support to deal with the onset and acute impact of Post Traumatic Stress Disorder (PTSD). I’ll keep this post to the difficulties I’ve experienced in accessing a GP.

In September 2016, I was referred, for the first time in my life, to what is known as an Intensive Home Treatment Team (IHTT), they used to be known as ‘crisis teams’. Essentially, it’s the community version of in patient psychiatric care, designed to keep you out of hospital.  The reasons for that referral, the process leading up to it and my general experience of the IHTT warrants a separate post. I’ll confine myself here to detailing my final experience of the team because of the profound impact it had on me, my health and my ability to access my GP and other services.

I was due to be discharged in early November. The service is a short term one, designed to deal with the most severe crises, those which put someone at risk. However, discharge is known to sometimes be unduly hastened due to the paucity of available resources as a result of under-funding. This particular team came in for criticism recently when a young patient died by suicide immediately after being discharged without further support in place. I already struggle with concerns about being a burden but further felt pressured to be OK when I really was not. The day before my planned discharge I considered. I knew that I was still at risk because further appropriate support had not been put in place. I was fighting to keep myself safe. I felt that it would better to speak up ahead of discharge, rather than afterwards when I would then likely have to go through the whole referral and assessment process again – no doubt generating bundles of paperwork – if I were to access the team again.

A Community Psychiatric Nurse (CPN) visited me on the day of discharge. She had visited once before and unlike with the rest of the team I’d found myself feeling wary of her. I pushed myself to plough on. I calmly explained, although not without cost, how I was feeling and the difficulties I was experiencing then. I revealed great detail about the horrible depths of my eating disorder, she is still the only person to whom I’ve revealed those details. She seemed quite nice about it, promised much action to get further support in place and said that my discharge was now on hold. She told me she’d call me the following morning with updates. It was early evening the next day before I heard anything when I received a curt call from the team secretary telling me that two team members were on their way to see me. They arrived moments later. I knew as soon as I opened the door to them that something was very wrong. There were no pleasantries and the pair, the same CPN together with a male support worker I’d seen a few times, were openly hostile. The support worker was openly aggressive. I was utterly bewildered. It transpired that they didn’t believe what I had told the CPN the previous day. They called me a fraud and implied that I was a liar and the support worker told lies about previous statements that he had made to me, about something the team psychiatrist had said to me about a referral to the eating disorders service, and about further support. I was appalled and visibly very distressed, almost unheard of for a woman with a compulsive ‘brave front’ who finds crying difficult, something that they knew.

I need to see my GP as soon as possible for a number of reasons, not least because my physical health has very much deteriorated because of the other issues I’ve been facing. The experience with the crisis team left me terrified that GPs, none of which now really know me, would also disbelieve and dismiss me. I became terrified at the thought of further mistreatment when I was already on my knees and fighting for my life. I know that those of my ‘mental health friends’ who’ve had similar experiences will relate to that last sentence. I’m never entirely comfortable saying that I’m ‘fighting for my life’. That’s not because I don’t believe the statement to be true but I know that while society accepts cancer, as an example, as a life threatening illness, very many are unwilling to accept that mental illness is often life threatening. Many still see suicide as a choice. I am pretty ‘gung-ho’ but no matter what I could not push through this fear. I didn’t give up and it’s taken a lot of work, various actions, to get to this point. Of course, had I not been handed hope this weekend I couldn’t have achieved this today regardless.

That whole experience with the IHTT was somehow surreal, in that I could not believe that health professionals, particularly ones working with people at risk, could behave so unprofessionally and without regard to their duty of care. This is the first time I’ve written about this experience, it was six weeks after it happened before I could speak about it. It’s only now that I am beginning to be able to discuss what happened in any detail. I won’t discuss here how I felt in reaction to it, except to say that I felt dirty among other things and I hadn’t felt that way since being abused as a young person. I told only my ex-husband who I rang after asking the IHTT workers to leave. I was very polite but firm, they were doing a lot of damage and were clearly unable to either recognise that or care about it. I was distraught and I knew I needed to do that to protect myself.

I rang my ex in utter despair, not knowing where else to turn, speaking to him helped a little, and at least I began to manage to step back from immediate thoughts of suicide and start to continue on.

When my call to the GP surgery was answered this morning all appointments with my GP today had been booked. The next bookable appointment was on Monday 26th. I also had the option to phone again tomorrow at 8am and try for an on the day appointment. Until two days ago, I hadn’t been able to leave my flat for four months due to a combination of PTSD and Complex Trauma symptoms and issues including pain and fatigue affecting my mobility. Ideally, at this time, I need someone to accompany me to the surgery and back home again to ensure I’m safe from falls and such. This is not impossible to arrange but is proving very difficult. A friend has generously agreed to help but, through no fault on her part, has limited availability.

With notes to read otherwise my nerves would have made me incoherent, I rang the surgery again in ‘speaking time’ later this morning – a daily slot when patients can call in and speak to their own GP, if available, or to the duty doctor of the day. Mercifully, I was able to be put straight through to my GP. He received a letter in early May expressing acute concern about my mental health from my newly allocated social worker. He wrote me a letter a week later telling me to make an appointment with him if I needed one. I started by saying that the social worker had been right to be concerned and that my health has been generally poor since February. I explained that I’ve had difficulty in getting to see him for a number of reasons, most recently because of the scarcity of appointments (I did say I wasn’t complaining about that) and because of the issue of needing to be accompanied. I asked politely, clearly and directly if it would be possible to make time for a 10 minute catch up over the phone. He didn’t answer, or offer a home visit as I know Great GP would have done, but said that he’d book me an appointment on Thursday at 10, that I could tell my friend and that he’d hope to see me then, that was it.

My friend is not able to accompany me on Thursday as she will be at a conference out of the area. I’ve decided that it would be a good idea to ask my advocacy worker to sit in on the appointment with me. She is not able to do the escorting to and from bit, but I’m wondering if I can get myself to the surgery in a taxi, which I was planning to do anyway as a one off, whether if I was to become too unwell afterwards she’d be allowed to make an exception and see me home. If not, my friend has offered to ask a friend of hers to accompany me if possible. So, a couple of options there, we’ll see what transpires.

With regards to the rest of the day, I need to do a laundry load – I  have an underwear crisis, I need to run the dishwasher, place an online grocery order and compose a couple of vital emails including a reply to my social worker’s message of Friday. I would like to take some time to reacquaint myself with my art journal. ‘Spoons’, as ever, will dictate for the most part. I know, especially given my disrupted night, that I’ve already scaled mountains today and I’m very pleased about that.

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Thanks for reading. See you anon.

Heart x

N.B. I have taken steps to begin the process of making a complaint about the actions of the IHTT. That’s what lead me to an advocacy worker.