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 

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

 

I’m baaaaaack!!

No really, I keep saying that but I really am back this time 🙂 !

Time and ‘spoons’ have been in short supply as there is such a lot going on in my life just now – all connected to the ‘big plan’.

I’m behind with my reading and commenting on other’s blogs and also on replying to comments on mine too. Forgive me, I’ll catch up soon.

I’m going to write a series of posts over the next few days. My intention is that they will be bite-sized updates and musings.

In the words of Miranda’s ‘Tilly’ bear withmore is a-coming …

 

 

 

 

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