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.

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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 

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

 

Vague and slow

I’m referring to my experience of the social care system, although I’ve also felt a bit vague and slow myself today … such can be spoonie life!

So, yes, I was referred to the social work service in my area in April 2016. A little over a year later (yes, despite the referral being marked ‘urgent’ it really did take that long – we would all lose the will to live if I were to detail all the intervening shenanigans) I met my newly allocated social worker who was to undertake an assessment to determine my eligibility for social care support. This involved taking a detailed life history (not inconsiderable given that I’m in my late forties) and details of the circumstances surrounding my need for support.

The assessment was undertaken in two appointments at my home of around 80 minutes each, 11 and 10 weeks ago respectively. My social worker also explained that she would be my ‘key-worker’, but despite being asked was unclear about the actual remit of her role. Generally it’s a role of co-ordination, in this case it seems that her responsiblility was to make an application for social care to my local authority on my behalf, which includes her assessment report and recommendations. The latter being that she believed I should be granted funds for a support worker/personal assistant/assisted living worker (they seem to have all manner of titles essentially meaning the same thing) for four hours per week, two hours twice weekly. This time would be utilised in two ways, split roughly 50/50 between domestic help – cleaning, cooking, shopping and other household chores – and social/emotional support – eg. company on a regular walks, support to go swimming or do other forms of exercise, help getting out and about where necessary, someone with whom I can talk.

The social worker went away to prepare and submit her report which she said would take around four weeks. In the meantime I was to decide how I would like my support to be provided, assuming funding were to be approved. I had to decide ahead of approval to make the process go more smoothly. This proved difficult as her explanation of the seemingly multitudinous options was less than comprehensive to say the least and I was left baffled. After some research on my part and a further brief meeting with my social worker, I made what I hoped was the right decision based on the information I had, although there were still gaps in my knowledge that I hadn’t been able to fill.

My social worker hasn’t had any other involvement with me and she left work yesterday to begin a period of maternity leave. She’d said she hoped to get everything wrapped up and my support in place before she left, but that wasn’t to be – an email yesterday evening told me that my third choice of provider could support me BUT has a lengthy waiting list. My second choice provider think that they will be able to support but have been unable to give a definite answer so far. At some point I’d already been told that my first choice had a waiting list of months … and months … and months.

If she could get support in place before she left her role, my social worker had said that I I would not then be allocated a replacement social worker – but that there would be a general social work number that I could call should there be any issues with my support that I couldn’t sort out myself. However, if support could not be put in place in time then, she said, my case would be allocated to another social worker.

Her last update came at 6pm on her last date of work. She had emailed in the morning to say that she’d definitely be in touch before the close of play and promised not to leave me in the lurch. She was unable to tell me who would take over my case, she said she didn’t know. I’m envisaging a department of overworked social workers with vast caseloads and a sense of not knowing where to put me. She did give me her manager’s details, ‘in case I wanted to chase it up.’

In my mind, I’d nicknamed my social worker ‘Stepford Wife’, perhaps unfairly, I do not know her well. She’s always appeared to be very smiley on the surface but it’s like there’s nothing behind the smile, she felt very disconnected. She’s young and had been in this particular role for around a year. Whether the stress of the job led to that ‘disconnection’ or that is just her way, I don’t know, but it meant that I never had full confidence in her nor did I ever feel entirely comfortable dealing with her. Still, I had to trust and hope that she would do the best job that she could for me.

I’m well aware that social care has been subject to significant budget cuts, something which I strongly oppose. There’s no doubt in my mind that people in need of services are suffering as a result. But it can be difficult to tell sometimes whether delays, poor communication and other issues are a result of the impact of budget cuts or down to the shortcomings of staff themselves.

I’m going to give it a week and then all being well will email the manager to try to get a further update.

Following the assessment, I have capitalised on the hope that support would ultimately be forthcoming, together with the hope I took from my friend’s unexpected visit seven weeks ago. I’ve used both to keep myself going. More on that in the next post.

Thanks for reading. Comments, shares, tweets all welcome as ever.

Heart x

 

 

 

 

Money, Money, Money

I’m not someone who is driven by money, money, money. I’ve no desire to amass great piles of it, and I struggle with the idea of people having vast fortunes way beyond any person’s need.

It is very nice to have enough money, by that I mean enough to live comfortably, to pay one’s way in life and to be able to live a fulfilling life.

I haven’t been able to undertake paid employment for quite some time due to ill health and the process of ‘trauma recovery’. The latter can in itself be a full time occupation. I was in paid employment as a broadcast journalist when I met the man who became my husband and I was able to contribute to our union, but he went on to support me financially for some years due to my ill health.

I’ve been in receipt of welfare support or benefits for a little over a year and a half now. Obtaining them is a stressful, arduous and sometimes dehumanising experience. Some months after my marriage broke down, I found myself unable to afford to heat my home or buy food. A couple of friends helped out but I had to rely on food parcels for three months, from one of the UK’s growing number of food banks.

I receive Employment and Support Allowance (£250 per fortnight), Housing Benefit (£500pcm) and a discount on my council tax bill meaning that I pay around £30 per month instead of more than £100. My rent costs £670pcm. I live in a one bedroom flat. It’s not ‘flash’ but it’s certainly comfortable. It could be cheaper if I were to move, but this is the first truly safe home I’ve known. It’s my haven. I don’t have the money for moving costs and waiting lists are long for local authority-owned property.

I am extremely mindful of my privilege because I’ve been able to obtain some financial support from the Journalist’s Charity, the charity for people who work or have worked in that profession. A friend wrote recently about her gratitude in having been able to turn to ‘Pharmacist Support’.

With the support of the JC, I have been able to have my hair cut and coloured this week for the first time in over a year. What?! I know, you might hardly consider a ‘hair do’ an ‘essential’. It was a scraggy, greying mess and together with my alopecia (I have female pattern balding) it was having a big impact on my self esteem. I am happier and healthier for it.

I was also able to visit the dentist, after many months, for a much-needed appointment, because I finally had the £20 needed to pay the fee I owed for a short notice cancellation due to illness.

I’ve been able to make an appointment to have my eyes tested next month, two years overdue, because I will have the money to pay for the new spectacles I need. They will be available at a reduced rate because I am in receipt of ESA but will not be free.

I’ve also been able to buy a number of healthy ‘ready meals’ – a ‘godsend’ while I continue to wait for social care support twice a week to be put in place, and continue to struggle to have the capacity for cooking. The healthy part is vital, particularly as I continue to try to recover from an eating disorder.

On a few occasions I was able to take a taxi to get me to vital hospital and GP appointments that I would otherwise have been unable to make due to my health issues, and also to return home from buying food from a budget supermarket. Budget supermarkets do not make deliveries.

Without that charitable support … NONE of these things could have happened. 

I have received support from the St Margaret’s Fund who gave me £200 towards the cost of a respite/convalescent break last year. I’m applying to another organisation in order to try to obtain funds for a similar break this year.

It is charity. I would rather not have to rely on it BUT at the same time I don’t feel ashamed about accepting it. I don’t find it easy to ask for that help but that’s because I know that in our society it does carry some sense of shame. People say things like ‘it’s not charity’ and they try to dress up ‘charitable support’ in some other way, as though accepting charity is a terrible thing to do. I’ve supported many charities, by donation and by fundraising, and I still donate, when I can, although just a pound or two here or there, supporting someone’s fundraising effort or buying a copy of the Big Issue. I believe in giving and I believe in sharing and I believe in a society that promotes opportunity for all, and which supports those who are in need.

Applying for the charitable support that I’ve received involves completing detailed application forms. I have often struggled to do this due to illness and have had to wait until such time as I could find just enough capacity to complete the task.

It’s struck me that much of the support available has a middle class tone. I was born and bred in a working class ‘cotton mill town’. I consider myself to be working class, but I know that many working class people would consider me middle class because of my privilege. I had a university education and have a professional qualification. I live in a middle class area, albeit on the edge of it and that of a ‘poorer’ area. I love literature, theatre, arts, read the Guardian newspaper and listen to BBC Radio 4. I consider those interests classless – I’ve loved all of them, with the exception of Radio 4, since my ‘cotton mill childhood’ (when I listened to Radio 1!) – BUT realistically I know that you need a certain amount of privilege to pursue them. It’s rare now that I go to the theatre because of the cost involved.

It seems that there’s privilege even among those who are poor. There is a charity offering financial support to ‘gentlewomen and artists’. I’ve seen others offering support to ‘gentlewomen’. Their definitions of what constitutes a ‘gentlewoman’ are undeniably middle class. They list ‘suitable’ professions and backgrounds, all of which you need to have had a certain amount of privilege to be able to claim. Being working class can considerably narrow one’s opportunities. A minority of students at Oxbridge come from working class or ethnically diverse backgrounds and that’s just one example.

What happens if you don’t belong to a profession with its own charitable body? What happens if you don’t have the means to discover that there are charitable organisations who may be able to help you regardless of your status, professional or otherwise? What happens if you don’t have Internet access, the default application process is now online, or aren’t even computer literate? I don’t envy those who must throw themselves entirely at the mercy of the state, run by many for whom privilege is everything.

Two links to UK based web sites that may be useful:

https://www.turn2us.org.uk/ – much useful information for people struggling financially and there is a section where you can search for organisations offering grants

http://www.disability-grants.org/grants-for-disabled-women.html – a database of organisations offering a variety of financial support to women with disabilities – the main site offers details for men too!
N.B
I love ABBA but I adore Meryl Streep, that’s the reason for the link to the Mamma Mia film version of the song at the top of this post!