Heart REset on living + SEVEN WEEKS

I think it feels as though more time has passed since that wondrous day following that fateful post. Certainly a LOT has happened.

I have always prided myself on capitalising on both hope and opportunity and I hope that this is evident.

I posted an update 14 days after my friend’s visit and I went on to post, on the 26th June, about the BIG PLAN that I was formulating and putting into action. I called it Operation Thrive. Here it is as it stood then, at that point all Priority 1 tasks were already complete or underway:

As at today, all Priority 2 tasks are now either complete or underway … yay! I have also taken a couple of tentative steps towards actioning some Priority 3 tasks.

I have had no further support since my friend’s unexpected intervention on the 10th June, except for the monthly visit of the woman I pay to help with cleaning tasks. I had three relatively good weeks then had three very challenging weeks due to a number of stressful events and by the end of the week before last was again struggling with suicidal feelings partly because I was overloaded and lacking support, but also because of the apparent impact of perimenopausal issues on my mood (I’ll cover this in a separate post). However, I managed to hold on and pulled through. Last week was altogether better and had a moment of real high! I’ll cover that in a separate post.

Priority 1:

  • I am writing most days – if not here, then in my journal. I haven’t done any work on my novel project recently but still without support my capacity is much reduced and there’s only so much that I can do. I am doing as much as I possibly can.
  • I have felt much less lonely overall, although I am aware that I am still largely isolated. In the seven weeks since my friend’s intervention, I’ve had one other visit from a friend and maybe five phone chats. I have taken the initiative and I am connecting much more with friends (almost all of whom live at a distance) via social networks. I post daily updates. I reach out when I need support and usually receive comments with virtual (((hugs))). Sometimes someone will chat via a messaging app. I am keeping in touch and not allowing myself to withdraw. One friend hopes to visit in September/October which would be lovely. Today has been difficult. I reached out specifically asking for contact yesterday and today, but there hasn’t been anyone around for anything more than a virtual (((hug))) or wave. When loneliness creeps in it does make things harder, but I keep busy and distracted as much as my ‘spoonieness’ will allow. At the worst moments I hunker down for a while. My calendar is as full as I can sensibly make it for the coming month. Perhaps by the end of the month or the start of the next, we can hope, social care support will finally be in place to pick up the slack, allowing me more freedom to get and out and build more of a life, and giving me regular twice weekly contact at home.
  • Rarely are two days the same so daily routines do vary but are generally good now. I’ve only failed to shower on a handful of very difficult days. I am mostly on top of chores – but need help to catch up with the mountain of laundry and some cleaning tasks. Luckily, I am very tidy and organised and that helps a lot.
  • Self care has improved steadily in the last seven weeks and exponentially so in the last week following a couple of significant appointments (more in a separate post)
  • My ability to get out and about has also approved steadily and continues to do so. I am  happy with my progress.
  • The routine inspection by my landlord’s agent was successfully carried out some weeks ago. My landlord himself, who lives overseas, will make an annual visit at the end of next month. If support isn’t in place in time, I will no doubt stress and overstretch myself ensuring that the flat is in entirely immaculate order.
  • I’ve been to the GP a couple of times and had the necessary tests. There are ongoing issues, I’ll cover that in a separate post at some point.
  • I am still without support for my eating disorder. However, I have made progress by myself. Progress has been steadyish and, more recently, certainly significant. I hope to join a local branch of OverEaters Anonymous but at the moment I don’t have the ‘spoons’ to attend its evening meetings. Evening outings are only possible if I rest for most of that day and each Tuesday I’ve had other commitments. I’ve recently discovered that Beat, the eating disorder charity, runs an weekly support group online. I’ve registered and I’m waiting for my registration to be processed. I will write a separate post about my weight and eating issues; they warrant it.
  • Psychotherapy/Trauma Therapy – there is a lot to say about that! Suffice to say for now that some significant progress has been made both in terms of provision and with my interim therapist.

I have resumed physiotherapy treatment – again a separate post is warranted. My treadmill routine got derailed by a lack of ‘spoons’ and being so busy elsewhere with appointments but I am determined to restart it on Monday.

I saw my dentist last week, had a fabulous appointment, I will blog about it soon and its relation to my recovery from abuse. I have a further appointment next month.

I’m due to have my eyes tested and get much-needed new specs next week.

I should be making a renewed application for Personal Independence Payments (P.I.P) in the next two weeks.

I have tried to return to a weekly support group for women who’ve experienced mental illness/trauma in the last couple of weeks but was thwarted by my ‘spoon’ count. Third time lucky this week, I hope.

Still without support, it is very difficult to keep all the necessary balls in the air. Some things are working well, while others are not. Some things work well for a time then fall by the wayside because something else has to take priority. The advent of support should see the emergence of some consistency and sustainability … both of which currently feel akin to the fabled gold at the end of the rainbow!

Thank you for reading. I’m sorry that this turned out to be more than a bite-sized post. Either I am just a waffler or there really is masses going on! I actually feel like I’ve written a lot but failed to convey all that is going on. Perhaps because I am tired.

Comments as ever are very welcome and appreciated. Do let me know that you are reading and that I’m not just talking to myself 😀 .

Heart x

 

Treadmill Tales: #12, #13 and #14

Another week of being hijacked by symptoms necessitates a slightly more creative treadmill routine.

I planned to do my session on Monday (Day 12) evening but in the end it just wasn’t possible to work it into my routine after a heavy day. My appointment at the GP surgery and a few errands had involved a good bit of exercise.

On Tuesday (Day 13) I spent 11 minutes on the treadmill and upped my pace to 3.4mph, I jogged for the first three minutes AND for the last minute. I covered 0.6miles and apparently burned around 56 calories – that’s a dark chocolate coated rice thin 🙂 ! I was very pleased with all of that.

Late on Tuesday night, I brushed my teeth and almost immediately afterwards found that I had a very sore throat and neck. I then really struggled to get to sleep and was awake until around 5am. The postie, buzzing to get in, woke me just after 11am. I was too sore and out of it to make it to the door in time. He left a card advising me of two parcels too big to go through my letterbox. I’m not expecting anything so I’m very intrigued. I’ve scheduled them for redelivery tomorrow.

I was able to get it together – just about – for my therapy session at midday. On days like that therapy delivered via the telephone is a boon. I wrote some notes after what was an intense session, then showered and dressed. I walked up to the top of my road (uphill) to the postbox, to deposit a wedding card for my ex-husband and his fiancee who are getting married this month, and I picked up a few items from the nearby shop. I found the whole endeavour a bit of a struggle and then knew I was either coming down with something or having a further spoonie flare up. I was SO delighted to see Pharmacy Bob at the top of his usual hour slot, avoiding the need for me to fight crushing fatigue any longer. I could barely keep my eyes open. I collapsed into bed at 4.30 and was soon asleep. I slept for around three hours then I watched some telly, had something to eat, and managed the odd message on social media. I felt rough, ached all over, my throat still hurt and I was coughing. I took paracetamol and when the achy turned to more intense pain, half wished I’d taken something stronger. I fell asleep around 1.30am and woke just after 9.30. I felt better than I had but had to take my time getting going. By lunchtime I’d completed my medication routine (one pill then wait an hour, then take my bile acid binding agent mixed up in fruit juice and wait a further 20 minutes before eating anything), showered, dressed and had something to eat.

I’m tired, sore and feeling slowed down and somewhat frustrated by that. Sitting at my desk is uncomfortable, but I really want/need to write today. I also feel rather ‘foggy’ which doesn’t help the writing. I’m behind with approving and replying to comments on here, I’m sorry about that folks, I’ll catch up as soon as I can, possibly not until I have a few more spoons at my disposal.

I hope to be able to get on the treadmill in a couple of hours time (mid afternoon) and clock up my 12 minutes. I really need to go out tomorrow if at all possible, so I’ll be concentrating on looking after myself as much as possible today to give me the best chance of doing that. At this stage, I think this is a virus. It can be difficult to tell as flu-like symptoms can come as part and parcel of my chronic illness. I really don’t like using the phrase, and prefer the euphemism spoonieness! That struck me there because generally I prefer direct phrasing over euphemism. A virus on top of spoonieness (!) can be a real pest.

 

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

 

 

 

Heart REset on Living + 14 days

Fourteen days on from the day that my high school ‘bestie’s’ unexpected appearance on my doorstep tethered me to life, a lot has happened.

I’ve made a lot of progress away from the suicidal depths and towards my goal of thriving. I’ve already written about my adventures in admin. I *think* I’m winning so far but there’s more to do!

Here’s what I’ve done so far. I’ll give you a bullet list, I’m going to write another post, perhaps tomorrow, about MY BIG PLAN.  With me, there is ALWAYS a plan … even if at the worst of times, it’s only a suicide plan. I thrive on planning, targets and goals, proactivity and productivity. Did I ever mention that I’m a wee bit driven …

Perhaps having to make the best of terrible circumstances when I was younger is what helps me to capitalise on every scrap of hope, opportunity or potential. Regardless of the reason I’m very grateful for that capacity.

  • I’ve showered 13 out of those 14 days.
  • I’ve been out twice to take out my rubbish, twice to visit my GP surgery and once to go to the hospital – having vital physical health checks. Bearing in mind that prior to this I had been completely housebound for four months.
  • I’ve started on the road to rebuilding my fitness and stuck to my plan for that.
  • Progress is ongoing following my assessment for social care (a personal assistant for four hours per week) – I’ll blog separately about that.
  • I’ve set the ball rolling for a return to the physiotherapy treatment I was about to begin when the crisis that left me housebound hit in February. I may not be allowed to resume – a funding issue – but it won’t be for the want of trying.
  • My eating is improving – another more in a separate post for that!
  • I’ve been keeping in touch with friends via email and social media and they are keeping in touch with me. I feel that I’m rebuilding some old friendships and developing new ones – if you fall into either category and agree, do let me know, my friendship confidence is still a little shaky :-).
  • Another dear friend stepped up two weeks ago, asking how she could help, her message moved me to tears. It’s gratitude, she said, for a “normal” life. This is because of the research I did that helped to crack the conundrum of the rare condition that was devastating her life. She said, “I have never nor will I ever forget what you have done for me.” I well remember her illness, and know I did research but much beyond that is lost to me. This was soon after my abuse was uncovered and the rug was pulled out from under me. I was all over the place but I’m so glad I seemed to have pulled it out of the bag then. Her words mean the world to me.
  • I asked a Twitter pal if she’d like to meet up next year – there’s reason for it being next year – and she said yes, which is lovely, and I look forward to our ‘day out’ .
  • I received a ‘care package’ in the post from another online friend, full of thoughtful items – either useful, fun or edible! From comedy dvds to batteries, a massage ball to peppermints.
  • On all the occasions that I left my flat I wasn’t wearing any make up (OK, except lipstick) this is also progress – and yes, more on that in a separate post!

I hyper-focus on ‘the bright side’ – that song could be my anthem, and I’ve recognised that in the last few days I’ve been having thoughts along the lines of … Look at you, you’re doing OK. You’re fine really. You don’t need support. It’s a familiar refrain.

I know a lot about ‘getting on with it’. I know a lot less about thriving within a supportive network. Growing up, trauma was played down and I was schooled to ‘get on with it’, to such an extent that it’s one of the main reasons that I didn’t recognise that I was being deliberately harmed.

Aside from that, having spent four months housebound, showering a couple of times a month, bingeing, starving and stinking, alone, dealing with flashbacks, grief and increasing despair, the last two weeks do look like nirvana in comparison!

I have to remind myself that while it’s great to applaud each step of progress and C-E-L-E-B-R-A-T-E the small things … it feels odd to call them ‘small’ because they are huge achievements when you’ve been struggling so much, but to most people showering, going outside, doing a little shopping, taking care of the basics, are small things … I have to have an eye on the bigger picture. That’s to say that I need to recognise the difficulties I still face, the burdens I carry and the mountains I have to climb, and allow myself to get help where I can AND feel worthy of it.

There’s more on the progress front but I think I’ve given you the highlights! I’m flagging, I’m low on spoons today. I plan to do my treadmill ‘5’ then allow myself to ‘flop’ and indulge in a telly fest of Doctor Who and Pitch Battle!

I don’t know where I would be now if my friend hadn’t made that mercy dash two weeks ago. I am glad that I don’t have to think about that.

Thank you for reading. As ever, I welcome comments, conversation and tweets.

Heart x

Adventures in Admin.

I wish Admin. were an exciting place where I was having the time of my life.

Rebuilding my life after months in the depths of crisis is exciting. It feels really good to be making progress but, I’ll admit, the administration side of the process can be more wearying than any other – emails, calls, forms, research … chasing this person … approaching that organisation … researching grants … and trying to make head or tail of the personal budgets/direct payments system in the ongoing quest for social care support.

In the last couple of days alone I’ve …

  • sent three emails to my social worker
  • spent considerable time and ‘spoons’ researching support and treatment options outside of the NHS for my eating disorder. and drawn a blank beyond the one option I already knew about which may not be suitable.
  • sent two emails regarding a local women’s support group – one a brief testimonial to support the application for funds to keep it going – another to update on my circumstances and inform the facilitator when I hope to be well enough to return.
  • researched organisations offering grants for a convalescence/respite break, sought advice about my eligibility, printed application forms, and contacted health professionals to try to find one who could spare the time to make an application on behalf, as that’s how the system works.
  • undertaken an online ‘test’ for Personal Independence Payments and carried out various tasks in preparation for making a new application, having been turned down last year. For those to whom it’s relevant, the test is here.
  • spent time making notes and trying to prioritise the many current ‘hot potatoes’ and decide what to take to my therapy session earlier today, in order to make the best use of the 50 minute slot.
  • emailed regarding restarting vital dental treatment stalled by serious illness.
  • made numerous checklists to keep track of it all.

This week I still …

  • need to contact several organisations and another person with disabilities who lives locally to try to get some clarity over the best option for me with the (haha) administration of the personal budget/direct payments – and all this before it’s even been confirmed that my application for funding – made by the social worker after several hours of assessment – has been approved. This is because the process is lengthy, and I’m told it will be further slowed if I’m not ready to go if/when approval is granted.
  • need to keep in touch with friends – replying to emails, messages, tweets and so forth. This isn’t a chore. I want to be in touch, I appreciate their contact and it’s vital to my health and wellbeing, particularly as isolation and loneliness are a prominent factor in my life and have had a detrimental impact on my health. That said these tasks still take time and ‘spoons’.
  • need to contact the charitable body which, last year, granted me funding for physiotherapy – it wasn’t available on the NHS. I had an assessment in February and was set to have a further 11 sessions when crisis hit and it had to be put on hold. I can’t even begin to explain the admin. now involved in trying to sort out a restart – both you and I would lose the will to live.
  • there’s further admin. relating to budgeting and welfare payments
  • there’s a mix up with my energy supplier – which owes me money – need to try to resolve that
  • there’s an energy ‘switch’ to organise in order to avoid a price hike
  • there are trips to the GP and hospital which currently necessitate various emails and texts to organise advocacy support where appropriate, or someone to ‘chum me’ there if that’s necessary,
  • tomorrow there’s a visit from my landlord’s agent for a routine inspection.

Blimey, I feel weary just telling you about it, and that’s not all of it but you get the idea 😀 !

My limited ‘spoons’ have to go a long way. I wish the blessed admin would do itself and I could focus on everything else that needs my attention like therapy, exercise, my eating disorder and other aspects of recovery and self management, getting out and about, dental treatment, writing, etc, not to mention the mere basics of daily living.

I think I needed to get that off my chest. Thanks for bearing with me!

Spoonie love,

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.

Tweet1 12 June 2017

Tweet2 12 June 2017

Tweet3 12 June 2017

Tweet4 12 June 2017

Tweet5 12 June 2017.JPG

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.

Tweet6 12 June 2017

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.