Treadmill Tales #1 and #2 

Two days down,  two days under my belt.

See yesterday’s post ‘Treadmill Tales: The Return’ for my plan of action. 

If you’re here for UBER stats you might be disappointed, I’m recovering from serious illness and have ongoing chronic conditions which mean I’ve got to start out really S-L-O-W-L-Y. 

Yesterday’s ‘five’ felt like it went on for longer than that (!) but I still felt the thrill of being on the treadmill and remembered how good it felt to run. I swallowed my frustration and walked as planned. I wasn’t paying huge attention but think my pace was 2.5 miles per hour.

I got on the treadmill just after 7 this evening, to my surprise really after a long, productive and active day. The ‘five’ flew by, I enjoyed it and felt I could’ve gone on for longer.my speed was 3.1 miles and I covered a wee quarter of a mile! 

Now I’ve had dinner and finally ‘flopped’ … all I want to do is sleep! 

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

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 

Putting myself into Standby mode 

Throughout the last week I’ve wanted to write, write and write. I’ve had to work hard to resist the urge to do too much either of writing or anything else. 

It’s been a momentous week with a sea change that’s swept me along, low ‘spoons’ and all. I’ve felt productive and counted many accomplishments. 

Today, I’ve recognised that both my body and mind need rest. I was awake at 7am and showered soon afterwards to await the arrival of the postie and a parcel courier..I began to feel ‘off’ and now feel poorly unless lying still, so that’s what I’ve mostly been doing this afternoon. I’ve napped, watched a lovely film about Billy Connolly, played some word games and read a newspaper online. I’ll continue to rest this evening. I would really like to be ‘up and at ’em’, so this is frustrating but I’m hoping that a quiet, very restful weekend will see me able to me more active come Monday. I still want to write but the fact that doing so right now feels like wading through treacle is a sure sign that intensive rest is required.

Thanks for reading. 

Over and out, for now.

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.

Successes, Safety and a Salient Staircase 

Sleep was brief, around four hours, but surprisingly restorative. I didn’t have the ‘spoons’ for this morning’s planned soak in the bath but was able to shower thanks to my bath board. It’s a disability aid that I was reluctant to take possession of last year but which is actually worth its weight in gold.

I spent some time menu planning – breakfasts, lunches and dinners – yesterday evening. Having a plan is beneficial on many levels not least in beginning to tackle my eating disorder, promoting self care and maximising my tight budget. Variety, satisfaction and healthy options are key to the former. As I said here, when ‘spoons’ run low cooking so often falls off my to do list. I’m making it a priority as one of my first steps out of this current crisis. Some old favourites will feature on the plan together with some new recipes. Here’s a selection:

  • Baked eggs with mushrooms and spinach 
  • Courgette and potato soup
  • Courgette muffins
  • Chocolate orange porridge 
  • Three bean pate
  • Porridge Berry Bakes
  • Sweet potato wedges with homemade houmous 
  • Mushroom and herb pearl barley risotto 
  • Quesadillas – most likely cheese and bean 
  • Lemon and dill courgette with broccoli rice, houmous & salad

Yes, I did buy a large box of ‘Basics’ mushrooms and large bag of ‘Basics’ courgettes and have been hunting ‘spoonie’ friendly courgette recipes!

Today’s breakfast was an old favourite from the Hairy Dieters – crumpets with warmed berries, fat free Greek yoghurt and a drizzle of honey. 

Lunch was herby mushrooms and tomatoes on toast, followed by a banana.

In case you hadn’t noticed, I don’t eat meat. Dinner was a bowl of the Chilli Non Carne that I made this evening. My recipe varies according to budget and what I’ve got in. This version used the following:

  • 1 large red onion 
  • 1 small red bell pepper
  • 1 small green bell pepper 
  • A handful of mushrooms 
  • A carton of ‘Basics’ chopped tomatoes 
  • A tin of ‘Basics ‘ baked beans 
  • A tin of ‘Basics’ red kidney beans 
  • Tomato puree
  • A cheat’s sachet of chilli seasoning together with my own ‘everyday’ seasoning 
  • A packet of Granose dried soya mince.

I bought several packs of the soya mince while it was on offer and much cheaper than Quorn  or generic chilled varieties. You reconstitute it with boiling water then treat as normal. It does not look appetitising when first made up but tastes good in the finished product! 

I’m really shattered and virtually out of ‘spoons’. Emptying the dishwasher of last night’s load and putting in today’s dishes has to wait until tomorrow. The chilli prep and cooking takes a fair amount of ‘spoons’, and by the time I finish I’m very sore, luckily it will make a few meals. My Fibromyalgia had already rendered me very stiff today, so when I stand up I can’t straighten up at first and have to painfully unfurl pace by slow pace. In these moments I laugh at my predicament to help me to deal with it. 

I’ve just enjoyed watching MasterChef. I do admire the cooking adventures of the participants. I smiled tonight at the appearance of ‘whey-glazed carrots’ … they’re waaaay beyond my culinary ambition! But seriously, if posting photos of your daily meals and basic cooking efforts seems dull or even narcissistic, I can say only that it’s integral to my thrust for recovery. I can’t remember the last time I ate three good meals in a day, let alone made three virtually from scratch. Posting in this way, in celebration of my efforts, is motivating and a useful record of my progress. Perhaps, somewhere along the line, my posts might help someone else too. 

9:50pm I’ve been pyjama’d and under the covers since a little after 8 but I’m determined to complete and publish this post tonight. I’ve had to rewrite half of it after WordPress gobbled it and refused to give it back. I suspect I’ll sleep tonight, but it might be an idea to take painkillers to try to limit the risk of #painsomnia. 

I was able to meet with my advocate this afternoon for the first time in over two months. This is a huge deal. I’ve made many attempts to meet with her since mid February but overwhelming trauma symptoms forced me to cancel each time. She visited me at home together with one of her colleagues, both were so lovely. I had written notes ahead of their arrival. We had a productive meeting  It felt safe, and to feel any sense of safety at all, after the devastating events of last year, is progress. I’ve yet to regain real hope for the future – something I thought couldn’t be shattered, after all I’ve survived so much, but last year’s events broke me – however, I’m focusing on an idea that was once very helpful to me … You don’t have to see the top of the staircase to take the first step. 

My advocate and I have made a plan of initial steps. We’ll speak on Monday and arrange a further meeting. 

 

Daily Log: 6th April, 2017

I slept well, extensively actually – fot around 12 hours – that’s been the way of things during this crisis. I either sleep a lot or I don’t sleep at all. 

I’ve changed my bedding today, showered, cleaned my teeth, dressed, aired the bedroom and dusted the bedroom furniture. I’ve folded some clean laundry, washed a few dishes and emptied the dishwasher. 

read for a while, and I’ve played a few games of Mahjong. I haven’t played any computer games for years, but when an ad for a free version popped up on my tablet, I remembered that I had once loved playing Mahjong on some device or other. Within days I’d whipped through the 40-odd levels, finding it an outlet for my natural drive. I’ll admit I was disappointed not to receive onscreen fireworks or some sort of fanfare to mark the achievement :D! I’m still hoping to beat previous times but mostly now play because I find it mindful and therefore calming.

I’ve just shot about a foot in the air at the sound of my buzzer, I have a ridiculously exaggerated startle response. I pressed the button to open the street door without speaking into the intercom assuming it to be the early arrival of supermarket delivery of groceries that I’m expecting between 9-10pm. Delivery charges range from £7-£1; this slot is the cheapest.I haven’t eaten today so I’m looking forward to it arriving and having some supper. I thought my wait was over but with no sign of the delivery person nearly 10 minutes later, it looks like wishful thinking. I’ve stopped hovering by the front door, peering at intervals through the spyhole for signs of my shopping being lugged up the two flights of stairs to my flat.  

The rest of the evening holds promise of further writing, making notes ahead of a planned meeting with my advocate tomorrow, and catching up with MasterChef before reading then sleep.