Monday musingsĀ 

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 

Treadmill Tales: Days 18, 19, 20, 21 and 22

Day 22 (that’s today) stats:

15 minutes in total
Three minutes jogged at 3.4mph
then nine minutes walked at 3.7mph
and finally three minutes jogged at 3.7mph

Total distance – 0.89miles and total calories – 80.1. 

I haven’t been slacking, I promise, I wasn’t able to use the treadmill on Monday to Thursday this week due to fatigue … and just to clarify as some people do get confused, fatigue isn’t the same as normal tiredness, it’s extreme tiredness, like someone just plugged the plug cutting off the energy supply, you cease to function. My fatigue is related to my Fibromyalgia. I have been active this week – busy days out of the flat on Monday, Tuesday and Thursday, so I have had some exercise. I am still getting over last week’s virus and I’ve had a LOT of stress to deal with this week in the form of assessment appointments for NHS trauma therapy, which gobbled spoons. I’ll explain why that came to be so difficult in a separate post. Some days I have crawled into bed before 8pm, once at 6:30pm!

I’d planned to make this a 15 minute week on the treadmill, repeating my stats from Day 17 each day. As I had missed four days, today I decided to push a little past those stats and jogged for a total of SIX instead of four minutes. It was hard work šŸ˜€ but satisfying … and I learned that I need to remember to remove my wig, if I’m wearing one (I have alopecia (female pattern balding), in case you’re wondering) before getting onto the treadmill because otherwise I really melt!

Treadmill Tales: Days 16 and 17

Still under the cosh of this virus, I skipped Day 16, but increased my time by two minutes today, Day 17, instead of by one in order to make up for that.

Time: 14 minutes
I jogged for the first three minutes at a pace of 3.4mph
the walked for the next 10 minutes at a pace of 3.7mph
before I joggedĀ the final minute also at 3.7mph
Total distance: 0.83miles
Calories: 75.2

I’m happy with that but I feel pretty tired now because this virus is walloping me. I’m enjoying the jogging, although the last couple of sessions have been hard because of the added impact of the virus. Walking still feels a bit boring compared to jogging but increasing my pace today helped to keep me engaged.

Tomorrow is a rest day. I start a 15 minute week on Monday, by which time I hope to be through the worst of this virus. It’s frustrating me in its greedy consumption of spoons! I am feeling grotty, fatigued, slowed down and I’m much less productive as a result – which is risky for my mental health – but I am coping so far.

Treadmill Tales: #11

Day #11 should’ve been Saturday but since spoonie issues laid me low enough to be in bed for most of the day, I swapped my rest day and made Sunday Day #11 instead.

I’m up to 10 minutes and a half a mile. Inspired by my little two minute jog on Friday, I jogged for the first three minutes yesterday. In the back of my mind I was wondering whether I should really be doing it, but it felt good. On the treadmill I am on the flat and that seems to have less bearing on my pain levels than walking uphill or on stairs.

Actually, the little bit of light jogging felt REALLY good, because I felt like running again might actually be possible. I was surprised that I was able to sustain a three minute light jog after an extended period of inactivity including a four month period spent housebound and mostly bed bound, but immensely buoyed by it.

Stats: 10mins – first three minutes lightly jogged, walked for the remaining time.
Pace – 3.1mph
Distance – 0.51miles

Today will be another 10 minute session, I’ll start increasing my time by a minute a day again from tomorrow. I’ll begin slowly increasing my pace again from today.

I am really happy to be back on my treadmill.

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 šŸ˜€ . 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 usualĀ 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)Ā or mixed connective tissue disorder.Ā 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 theĀ spoonie/chronic illness category, it is experienced differently from person to person. Again, like otherĀ 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. Ā 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.Ā The service appears to have become more reactive, with preventative measures taking a back seatĀ 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.Ā 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 otherĀ spoonies who may have some thoughts on this.

Heart x

 

 

 

Treadmill Tales: #7 and #8

Yesterday was a miss. I was due to increase from five to six minutes yesterday, but jumped instead to seven minutes today.

Stats: 0.35miles at 3.1mph – it felt slow today and I was itching to increase my pace, again I reined inĀ Tigger and stuck to my plan! I’ll continue to increase my time by one minute from now on, on up to 20 minutes where I’ll reassess, then hopefully move on up to 30 minutes. From 10 minutes I can start to increase my pace … yay!

 

Treadmill Tales #5 and #6

I completed my treadmill ‘5’ at 11 this morning, clocking up the same stats as on the previous five days – 0.25 miles at a pace of 3.1mph. Slow, slow, slow but I know it’s the way I must go! Again, I enjoyed being on the treadmill on Saturday and this morning. I felt it in my knees, the left of which took a huge whack in a fall last November, today. Falls are part and parcel of my ‘spooniness’, and I’m most prone to them when stressed, rundown or insufficiently pacing. The knee issue this morning may be down to the timing of the ‘tread sesh’, those last week occurred in this afternoon or early evening, it may have been due to the pain and stiffness that are felt especially on waking and for some time afterwards, due to Fibromyalgia.

I made myself laugh while ‘treading’ on Saturday, just after writing this post, as I suddenly remembered a host of other achievements I could have listed. It cheered me anyway to remind myself of what I’m clocking up.

Sunday is a rest day – no treadmill on the plan – which was just as well as it became an ‘enforced rest’ day as it turned out. My mood was somewhat impacted, which is always a worry, and my mind was bothered at turns by grief, memories and new understanding. The latter is welcome but can be painful, often very, and is difficult without ready support.