Treadmill Tales 9/9/2017

They’re back … again!

I have missed this but it just hasn’t been possible to run on top of everything else lately. the last two weeks have been jam-packed with appointments – dentist, physiotherapist, GP, nurse, advocacy worker, NHS clinical psychotherapist for parts three and four of an assessment, voluntary sector trauma counsellor, dishwasher repair chap, new windows quotation chap (quoting for my landlord not me) and eating disorder support group.

I’ve also been establishing new routines to take into account my daily physiotherapy exercise regime, journalling – for planning/organisation plus recovery and self management, daily mediation, daily ‘Morning Pages’, daily connection with five friends by means of an online group chat, and a daily food intake diary.

I couldn’t remember what pace I ran at last time but I did remember that I ran for five and half minutes. I knew that I’d need to start slowly and build up again, frustrating but necessary. I wondered if I could do the same amount but in two shorter runs. I settled on doing two three minute runs. I settled on running at 4.2mph, I’ve just checked and my last was actually run at 3.7mph.

I ran for three minutes, I enjoyed it and I’m very glad to be back on the treadmill again but I’ve realised that three minutes was enough for today.

STATS
3 minute run
4.2 mph
0.19 miles

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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.)

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

 

 

Applauding myself and keeping going with a smile on my (red) face in spite of it all!

I’m jumping back in where I am, and trying not to get bogged down by trying to fill in the gaps. This post will be part explanation and part celebration.

Why the celebration? Don’t get too excited, this won’t be the average person’s idea of celebration. This is a #spoonie celebration, that’s celebrating every achievement when times are difficult due to chronic illness to remind yourself that you’re a legend … 😀 ! This is particularly important to me because I have so little in the way of support, still waiting on social services – less said about that the better right now, and keeping going on your own in the face of so much can be very very tough. This is like being my own ‘cheerleader’ 🙂 .

I was woken by the phone just before 9am today. I felt dreadful. My night was a bit of blur but I remembered that it had been marked by nightmares and night sweats. I spent a lot of time going to and fro the loo, thanks to a bad bowel flare. I also felt nauseous and clammy, and the fatigue that has particularly plagued me recently was still present. Thankfully it wasn’t so bad as yesterday when I had to go back to bed at lunchtime because I couldn’t stay awake and kept falling over, but this morning five minutes or so of activity warranted rest afterwards.

I’ve just realised that my face is showing signs of that horrible flare up again, the one that happened several times a few weeks ago. At its worst my face ballooned and I could barely open my eyes. Earlier today I thought something didn’t look quite right when I glanced in the mirror but couldn’t pinpoint anything specific. Now it’s looking increasingly red, particularly around my eyes and mouth, as before, and under my chin, and it has begun to itch … *dashes off to take an anti-histamine*.

I do generally feel like a I’m in a ‘flare’ of some sort. I ache, I’m lurching between insomnia and the most crushing fatigue, I have too little energy (hence no treadmill tales of late – I’m desperate to run but at the moment have no capacity to do so) and my digestive disorder (Bile Acid Malabsorption) is seemingly flaring unexpectedly and very badly. There’s also the nausea, hot flushes, clamminess and night sweats, and I’ve been experiencing violent mood swings lately, not at all like me, resulting in sudden and very severe depressions. I lost six days to one last week, things got very desperate and I became actively suicidal at its peak. I’ll cover that a little more in a separate post. I strongly suspect at least some of the symptoms to be due to a hormonal issue, likely a particularly impactful perimenopause, but I don’t know if that’s true of all of them. I would like to know what’s going on and I’d certainly like to feel better. All recent blood tests apparently indicated that all is well …

I’m conscious of not wanting to make this a long post, and of the need to take off my make up and apply some of the dreaded steroid cream since my face has begun to flare again. I have no idea what is behind these flares, but still suspect something systemic. I wasn’t wearing any make up at the time of the original incidences of this, and today I’m wearing minimal make up, nothing new, that I’ve worn a lot recently without incident.

Today’s achievements

  • Shower/Dress
  • Meds
  • Therapy session
  • Too nauseous to eat breakfast but made a lovely post-therapy brunch
  • Answered the phone twice – first a wrong number, a lot of people seem to think that I am a fancy hotel in a neighbouring district (!), second time it was the tradesperson who’d arrived to carry out annual safety checks for my landlord but then couldn’t work out which entry buzzer was the one for my flat, so rang to be allowed in!
  • Created a new label for my buzzer on the door entry panel, to replace the previous one which had worn off, and stuck it firmly in place when I went down to take out my rubbish
  • Started an online art therapy course – completing the first six lectures
  • Did a lot of work in my bullet journal
  • Dealt with my pharmacy delivery – ‘Pharmacy Bob’ was as lovely as ever.
  • Emptied and refilled the dishwasher
  • Put on a load of laundry – phew, looks like I just escaped having to start going commando … !
  • Booked a cab to get me from a physiotherapy to a dental appointment on Friday. The physio is squeezing me in, it’s the only space she had, but it leaves me with just 10mins to get to my appointment at the dentist – hence the cab and a need for me to shout, ‘Step on the gas, my man!’ (not really 🙂 )

Still to do

  • Report leaking dishwasher
  • Hang laundry
  • Make this recipe – hopefully it will be a bit of a treat
  • Evening Routine

 

Treadmill Tales – day something or other +2

Just a very quick update because it’s late (for a ‘spoonie’) and I need to eat then rest.

I couldn’t run yesterday much as my mind wanted to do so, my body was not capable. I was very fatigued after a poor night’s sleep; I got just four hours and that was broken. I had a busy day too, out and about and also carrying shopping. I arrived home at 4:30pm and it was all I could to collapse into bed soon afterwards.

Today I ran again and it felt really good. I listened to a track by Mike Oldfield called Crises. I’ve got a 20 minute version on my MP3 player. Give it a listen. The beginning instrumental section is rather mellow, then there’s an upbeat instrumental section, before some vocals, that was a perfect accompaniment for running. In fact, I rather wanted to dance!

I wanted to try to beat yesterday’s stats and thought I’d aim for a six minute run. At 5:30 I knew that I’d done enough for today. My goodness, I think I might actually be cracking this pacing malarkey at long last! It’s only taken me … YEARS and YEARS.

Stats:
Time – 5 minutes 37 seconds
Distance – 0.33miles
Pace – 3.7 miles per hour
Calories – 30

 

 

Treadmill Tales – day something or other!

I’m back in the zone 🙂 !! I’m hardly a boxing fan but somehow this music sums up the ‘training vibe’.

I’m feeling good – I’ll blog about the reasons for that later in the week when I’ve more time – and I was finally able to get back onto my treadmill this afternoon after a forced haitus of around two and a half weeks.

I felt like running and I did. I thought I might manage a six minute run, then I got sensible and thought I’d do four and a half minutes. As it turned out, I pushed it to five and felt jubilant. I’d finally dug out my old MP3 player. It was very cheap; it’s touchscreen but barely :-D, still it works and it’s stuffed full of all manner of music and podcasts. I love the treadmill but I need something to listen to, otherwise I get bored. I ran to the sounds of the Best of Abba.

Stats:
Time:- 5:09 minutes
Pace:- 3.7mph
Distance:- 0.30miles
Approx calories burned:- 27.3 calories

If you’re reading this in isolation, it’d be helpful for you to know that I’m returning to exercise after a long and serious illness and that I have some health issues that require me to build up slowly and carefully. Pacing is vital. I’ve crashed and burned so many times and have finally learned that lesson.

wp-image-2092231270jpg.jpeg

 

Monday musings 

Feeling a bit scared tonight because I’m a lot more fatigued and in a lot more pain than I’d expect to be in accordance with my activity. 

I don’t think I’m coming down with anything and I have been pacing myself very carefully for the last couple of months. 

I’ve just got into bed (8:05pm) and I’m tapping this out on my phone. I’ve got a very early start tomorrow because I’m due to attend a free course run by a local organisation for people who have disabilities. Both lunch and transport are provided and I’m due to be collected by taxi at 10am. 

I’m worried that this excessive pain and fatigue is a sign that I’m entering a flare-up – a prolonged period of increased symptoms. A bad flare reduces my capacity to near zero and makes it very difficult to look after myself without support. Such incapacity and not being able to properly look after myself takes a serious toll on my mental health. I have one friend who could drop in with supplies in an emergency but she travels a lot and is often not in town. Otherwise it’s just up to me. 

It may not get so bad again this time. I am well aware of that and I’m certainly not trying to focus on the gloomy side. That is definitely not my way. I guess I’m just aware of how much I’m at risk while I’m still without support. Things are hard as it is day to day but in a flare up they become impossible. I suppose that no matter how positive, how Tigger I am, that reality remains and whether consciously or unconsciously it’s hard not to worry when symptoms worsen. My mood feels wobbly, better than over the weekend, but as though it’s not on solid ground. It feels vulnerable and so do I in turn. 

I knew I faced a huge challenge to carry on without any support at all while waiting for the wheels of the social care system to turn. It’s been almost three months now since I was finally assessed and found to be in urgent need of support at home. I’m hoping so much that support will finally be in place by the end of this month.  I hope that I will be able to take my foot off the pedal just a little and feel like just a little of the burden has been lifted from my shoulders. 

I’ve had a productive day today starting with some physio exercises, then, after showering and something to eat, doing necessary admin, some domestic stuff including two very necessary loads of laundry to provide me with both clean underwear and towels. I posted some cards and letters, picked up a few errands and I met a friend in a nearby cafe for an hour which provided me with some very welcome company and conversation. She has schizo-affective disorder. As I understand it, that means that she sits somewhere on the spectrum between schizophrenia and bipolar disorder. She feels herself to be bipolar with a bit extra thrown in. She has many challenges of her own. We arranged to go to see a local band play late next month. It’s a free gig, just an hour in length, so bite-sized which fits my spoonie requirements, and is during the daytime, which is also a must for me. I’m silently praying (or something, given that I’m an atheist) that I will keep well enough to go. 

It’s high time that I stopped writing and focused instead on trying to relax. I need to be asleep by 10:30pm at the latest. I still need to assess whether I’m going to need painkillers in order to be able to sleep. I will manage without them if at all possible. I also need to clean my teeth and moisturize – the last couple of bits of my before bed routine. 

G’night folks!

Heart x