Honouring My Biggest Commitment: Keeping Myself Well


Even though I limit myself there’s still a lot of competition for my time and never has it been as busy as it’s going to be this month. March will see trips to The Royal Hallamshire PVDU and an endoscopy, at my local hospital as well as diabetes outpatients and the usual routine appointments. Never have I felt less motivated to attend appointments or take long journeys, as in all honesty, I am tired. Not just physically but mentally too. 

I rouse myself from sleep with a bone deep fatigue that I cannot imagine ever being free from. I could happily sleep fourteen hours a day but don’t remember what it’s like to feel refreshed. I suppose I really do need these hospital appointments as clearly this isn’t me at my best and my ability to do the things I enjoy is severely restricted yet again. 

I make no apologies for prioritising my well-being and my outpatient appointments. Thankfully those with a modicum of understanding agree with my need to attend outpatients and are not demanding anything of me that would make matters worse. Those who aren’t so generous are not so deserving of my time. 

Back to Slimming World

I took a break from Slimming World for a couple of years and gained back all the weight I lost in my two years of membership. During my weight gain I felt ill as a number of health issues exacerbated, but I made myself so restricted I was not enjoying food and really needed to address my deeper issues with food. 

This year I restarted the Slimming World plan and lost 5lb in my first week. Keeping an accurate food diary has been instrumental and is actually a good use of my attention to detail, but the biggest hurdle I have overcome is accepting I do not need to eat the foods I craved in the past. In reality, we need few calories to function but eating well means having a good knowledge of ourselves as much as being informed about the food available to us.

It’s different this time round as I don’t feel restricted and I feel much more comfortable about saying I’m not hungry and not limiting my life by not eating out or occasionally choosing food I enjoy. As is usually the case if I abandon Slimming World so does my husband, and going back on plan is something we both did this January. 

I am amazed by how quickly I seem to be losing the weight this time round and at two weeks on plan I am looking at losing my first 7 lbs, that’s my half stone milestone, tomorrow. The key this time is to not get bored and allow my food choices to feel restrictive, as well as allowing myself to enjoy life as I lose weight. 

I look forward to bringing my regular weight loss progress to my blog. 

Decisions, Decisions

I feel I have been complaining for a while about generally not feeling well. Broken down into its functional parts, I suppose, I am extremely breathless doing day to day stuff like going to the loo, showering and getting dressed. I cannot actually go out in public and walk reasonable and necessary distances without stopping due to breathlessness. I’m breathless talking after arriving anywhere. I anticipate results of my nocturnal oximeter testing any day now and the ominous silence from the sleep clinic fills me with dread. Based on my symptoms, it was concluded on my last PH clinic visit, that my PH is worsening and dual therapy is not, and will not, remain adequate for me much longer. However, in order to qualify for third line oral therapy, I will have to initiate contact with the organ transplant team. That’s right, major surgery and a transplant potentially to get access to oral therapy not yet approved on the NHS. A lot to think about. In other news, my blood sugar and peak flow remain good, andmy endometrioma has been relatively painless, so I am managing those chronic illnesses well.

My OCD is better but I have bouts of anxiety and depression triggered by periods of loneliness when my husband gets busy and I’m left to my own (dysfunctional) devices. I feel happiness on a daily basis but the feeling may only be fleeting. On the topic of OCD, it was brought to the attention of my group that we are expected to stay in therapy for two years and then leave. Oddly in the two and a half years I’ve been going no one has functionally left; we had one member drop out in my first six months. 

So in summary November 2016 kicks off with referral to my local organ transplant team, hoping for third line oral therapy for my PH and planning an exit from my psychodynamic group therapy. As shocking as the concept was in group to consider leaving, I feel unexpectedly accepting about it. I am motivated to do something else an afternoon a week out of my current comfort zone and am exploring the options. I find myself running out of excuses as to why I can’t register for a module on a study course which would be intellectually challenging and good for my mental well being. I live ten minutes from Birmingham University and online access is in my face, figuratively speaking.

The transplant issue is a tricky one for me. I don’t feel allocating me a new organ is the best use of resources but the assessment isn’t my call.I lost my mother when she was sixty-two and at forty-two, with my current health challenges, I cannot see myself out living her. I conclude this with a modicum of emotional detachment, it’s just statistics. Let’s just say if it was up to me I wouldn’t consider myself a viable candidate, but if I don’t positively comply with heroic measures to keep me going I’m letting down my husband and the clinical team who have been working with me since my PH diagnosis in 2012. It’s premature to think about living with a new organ, but this time last week, I was far from thinking about leaving group therapy, which is an inevitability that has silently crept up on all members of group I see weekly.

Inevitable changes begin with a move in venue for group and a practical requirement for me to be independently mobile to get to appointments solo. I currently have had a set of wheels at my disposal for a while now, removing yet another barrier to remain cocooned. Again unexpectedly and oddly I feel quietly enthused about being mobile and battling rush hour traffic on occasion. Where was this optimism a decade ago when I needed it to keep my job? 

I don’t want to look a gift horse in the mouth so I shall unquestioningly take any enthusiasm I muster to improve my quality of life. The next phase of adaptability has begun.

#BookReview Ashley Bell by Dean Koontz

​Bibi Blair is a writer surfer chick diagnosed with an inoperable brain tumour, which miraculously disappears two days later, however the price to pay for this spontaneous recovery is to find and save a girl by the name of Ashley Bell before she is destroyed by a malevolent cult. 

Not knowing what to expect from this 2015 must-read thriller, I started off liking it with a great expectation as we navigated Bibi’s symptoms and life. Then I would have to say the story got weird when Bibi finds herself cured and undergoes a massage followed by divination (only in LA?), leading to a cat and mouse game that perhaps was too sophisticated at times to be entertaining to me personally. 

However the story takes a turn at around mid-point that brought my imagination and will to finish the book back just in time for a more engrossing forty percent of the book. I didn’t exactly dislike this book but it just didn’t reach the depths of what I consider dark psychological fiction. Bibi is a great protagonist and I enjoyed reading her but I cannot say this is the best Dean Koontz book I have read and admittedly he did almost lose me as a reader less than halfway through this thriller. 

Overall an odd but OK read, which seemed to promise more than it actually delivered. 

Links To Book:

Amazon UK

Amazon US

Goodreads

(Lack of) Sleep At Night Causes Reading Disruptions

I was told when I was diagnosed with Pulmonary Hypertension that I may feel very tired, as tiredness is a symptom of the illness, but I didn’t feel I had any issues other than shortness of breath and chest pain. 

However, four years on, I have to admit I do feel tired and worn out by the slightest activity. My exercise tolerance is the worst it has ever been and I am still waiting for night time oxygen therapy now that three out of four Respiratory Consultants feel it is necessary. 

What frightens me are the twinges of chest pain I get at night whilst resting. Am I imagining it? I have no intention of pursuing any avenue of investigation related to this chest pain at rest and if there is an issue I’m sure the cardiac MRI I am booked to have within the next month will pick it up. 

What makes this illness hard to deal with at this time for me, is the constant doubts I have about my own symptoms and a fair dose of paranoia I feel as a (retired hurt) medic. For example, I am convinced a few of my fingers appear to be clubbing. This is not as fun as it sounds. Clubbing is a sign seen in chronic respiratory disease and I swear I see a hint of cyanosis in my nail beds from time to time.

I have to say to myself, so I do have clubbing or cyanosis, so what? The idea is to keep being able to do the things you want to and leave the worrying about symptoms and signs to the medics. But, you see I cannot do that. If I left it to the medics I would not be getting CPAP or oxygen. My day time somnolence seems to be a significant symptom to me of low oxygen saturations of around 87%, but without seeing the results of the sleep study, not all the respiratory consultants I see accept this. The rules and margins of error in judgements is very different when you’re the patient.

If there is the slightest risk that periodic nocturnal hypoxia may worsen my pulmonary hypertension then I want to minimise that risk. If the studies in sleep disorders and diabetes show a more positive outcome for patients on CPAP I want to be in that group.

I’m pretty sure I don’t want to live forever and I am not so concerned about my length of life as I am concerned about my quality of life, which is probably the worst it has been since my pulmonary hypertension diagnosis.

I find myself falling asleep whilst reading, which is not good news for a book blogger. I find myself randomly dizzy and always severely short of breath on the move. I have a short fuse because everything seems like such a tremendous effort and my energy reserves flag at the best of times.


Despite my many complaints and whinges, I don’t feel too down about stuff and I am willing to go with the flow most of the time, but I can’t help but feel this is a significant irreversible worsening of a chronic illness that I know will be more physically limiting in future, in which case I must get on and get stuff done before the opportunity slips away. 

Becoming My Mother

As time goes by, I notice myself becoming more like my late mother, both in appearance and attitude. My Mum hated walking long distances. I avoid walking long distances because I get short of breath easily and this causes concern more to those around me than myself.

Mum preferred to eat out than to cook but then had very specific tastes when it came to food. Although I don’t share her love for fish, I do enjoy sticking to a number of favourite dishes. In fact there are things I no longer eat because my Mum isn’t here to make them and I do not know anyone or have anyone who could recreate those dishes in any way that could do them justice.

Although I have had my driving license since I was seventeen and have clocked up thousands of miles over the years I find myself anxious behind the wheel and am happy to let my husband drive. However, I am probably one of the worst passengers in the world as I flinch, comment and basically am a pain of a backseat driver.
 

This too is very reminiscent of my Mother who was a nervous passenger and driver. In fact, my husband rejoices if I take the wheel when we go anywhere, because he feels I benefit from the experience and my driving skills are wasted. I debate having any skills, such is my loss of confidence in middle age.

Mum was a type two diabetic from a young age and so am I, having been diagnosed with diabetes at the age of thirty-two. I’m not sure whether it’s all completely psychological, I strongly suspect not, but since my diagnosis I crave the things I’m supposed to avoid or eat in moderation. Thankfully neither one of us took to smoking, as that would have only added to our predisposition of ischemic vascular risk factors.

Unlike my mother, I choose to handle my diabetic management with a firmer line and make sure I take my metformin at the prescribed dose daily and I hope to avoid having to go onto insulin in the near future and hopefully avoid diabetic complications for as long as possible. 

Most of all I check myself before sounding like my Mum. I think we all subconsciously if not consciously try to recreate the environment we felt safest in childhood and with that comes adopting prejudices, beliefs and attitudes that mirror parents. Parents are not flawless and nor should they ever be, but it is our responsibility once we steer ourselves to examine what we think and say for their true meaning and practice what we think we believe. 

As much as I loved my mother I question my reactions to certain situations and think hard about their implications in terms of my shortfalls. I don’t think my Mum ever thought she had any shortfalls, but I cannot say the same about her or myself. Being human means being flawed, but not everyone can bear to see their flaws and learn to love themselves anyway. I think a lot of people can see flaws in others but love them regardless, but it is much harder to accept your own shortfalls and be happy. 

Shortfalls and imperfections in people are not reasons to think less of them. I totally agree with the concept that staying angry just results in punishing yourself repeatedly. So I let the anger go. I don’t dwell in the past, despite having many clear memories going back decades. Instead I choose to remember the good times, the times I felt loved and part of my family. However, I am under no illusions that the key problems in the family I have known centre around blame and focus on what everyone else needs to do, rather than finding positive change in ourselves. 
It’s difficult to hear rhetoric and advice that could and should be applied in equal measure by the advisor. There can be no dispute about the love I know I felt for all those I spent time with in the past. I’m just shielding my dysfunctional heart from further pain by keeping my distance, in which respect I’m nothing like my Mum.


The Symptoms Conundrum

Anyone with chronic illness knows they have their ups and downs, but how much of the reality of how we feel do we really share with friends, family and healthcare professionals? 

When asked every quarter about my mental health, I usually just say, “I’m fine, thank you.” I don’t elaborate about the numerous sleepless nights or the feelings of worthlessness that lurks daily, inbetween and during, things I do. I highlight the positive and sweep away the negative, because in all honesty I am playing a game to enable myself to remain in the status quo. 

For me personally, change is hard, I dont adapt as well as I think I should or it appears I need to in order to meet the demands of everyday life and I have no hope of better circumstances. Hope is a currency of youth I simply depleted long before I should have felt aged. That is the tragedy and effect of long hours of worry and mental anguish. From time to time I do see a glimmer of hope, but it’s usually a faraway flash and translates to acceptance of my ever growing limitations.

Under the medically compliant and effusively practical surface there lurks a deep and dark well of dread, doom and despondency. I’m doing well if I ignore it most of the day, but after days it becomes impossible to carry on regardless. Superimpose on that the chest pain, shortness of breath, current soft tissue injury threatening to become infected and the anaemia making me tired and anxious, and it just seems too much to cope with at any given moment.

So, I hit the books and thank heavens I don’t face all this alone and am living with the ying to my yang. I try to recapture that feeling of once being free of any burdens of expectations and simply living in the moment and enjoying my life, which is the point of being here as much as we are here to help each other, but somehow I overlooked the simplest of pleasures, whilst trying to cope with the multiple doubts of my existence.

Some say I over think things, some say I cannot see the wood for the trees but I can’t stop and I just want to sleep for a thousand years. 

Excessive Wallowing/Overanalysing

Many of us are prone to over thinking stuff, which leads to self-criticism and self-loathing in those of us with self-awareness and a sense of blaming others in those without it. Recently, I know I am over thinking stuff and to counteract that I have tried to be in the now by trying new experiences, which has not been easy, but has been beneficial overall.

From high teas in sophisticated dining establishments to browsing books, I have tried to put my mind at rest and focus on the here and now, which has had a reasonably good effect on my mood, but has drained energy levels significantly. Just when I thought I was feeling better, I was told I had a noticeable drop in my blood haemoglobin. I usually don’t worry about being anaemic unless I drop into single figures in my haemoglobin levels, so couldn’t ignore the results this time. I have felt tired lately but put it down to the expected affects of chronic illness and nothing out of the mundane ordinary.

There’s no obvious cause for being anaemic as far as I can see and things seem to be the same as always from my point of view. It’s a source of frustration for me that I don’t get to see my haematology report myself to check mean cell volume etc, which would give me a clue as to the type of anaemia I have so I can try to decipher what’s going on with me, but maybe that’s a blessing as I would be back to overanalysing stuff and I have learnt that figuring such things out is not my job anymore.

As much as I appreciate the care I get from various departments of the NHS, I couldn’t help feel a little frustration with the pulmonary hypertension team when my practice nurse pointed out that the bloods that indicated I was anaemic were drawn on 8th July and it’s taken almost a month for whoever should be dealing with the results to contact me and when I (over)think about it, there was no plan when I was informed, I took it upon myself to have the test repeated. I see the same nurse to have my bloods drawn every month and couldn’t explain away the delay or the find a reasonable explanation from my point of view as to why I should be anaemic now.

The Pulmonary Vascular Diseases Unit seems so far away in space and time when something like this crops up and time seems to slow,as I run through all the worst case scenarios spawned by various risk factors, including a florid family history of diabetic complications. No doubt, the probability is that there really isn’t anything serious going on, but in all honesty the probability of being diagnosed with pulmonary hypertension was incredibly insignificant, so I no longer trust in low odds.

Is it overanalysing when there could be a significant underlying cause for something? Has my recent reduced reading speed been a symptom of the anaemia I now have? Would it have been easier on me if I wasn’t told I was anaemic? Am I over thinking this again? All I really want is to find my reading mojo, which has been absent for the past month.

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Fourteen Years Ago Today

I was married over the course of three weekends in July 2002. My Nikkah ceremony, which is the religious act of marriage for Muslims, was on the first Saturday, 14th July 2002.

I remember the day well, not least because I scalded myself on the steam from the kettle that morning. It was an emotional rollercoaster of a day, but on a deeper level for me it was a day where I found anchor after feeling adrift for some time.

The last fourteen years have taught me a lot about commitment, compromise and being part of a team. I have learned to be more resilient and trusting. I have dealt with health issue after health issue and been left astounded by the short straw I drew, but I have also been surprised by my own capacity to adapt with adversity and see everything through a sense of humour.

None of the positives of the last fourteen years would have been possible without my husband and I cannot imagine living through the negatives and coming through intact without him.

Indeed when I look back over my life, the one constant and solid relationship I have is that with my husband. Our relationship is based on honesty and sheer grit to get on with whatever life throws at us, and we have had more than our fair share of tears, frustration and disappointment, but I wouldn’t change anything: not the illness, investigations, diagnosis and draining treatments I endured, which barely take me up to our tenth wedding anniversary when I was diagnosed with Pulmonary Hypertension.

Through thick and thin, better or for worse, I have been enriched by my marriage to a man who doesn’t know the meaning of giving up and is single-minded in his drive to do the best he can, even when no one is looking.

He has come to define the words consistency and integrity in a world that keeps changing. I just hope I live up to my end of the bargain, which has always simply been to be well enough to laugh.

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Thank You NHS For Looking After Me

It’s been almost exactly four years since my Pulmonary Hypertension diagnosis. How do I know? Well I had my first and only angiogram on my thirty-eighth birthday, 21 May 2012 and my cloud photo album reminded me I took this photo four years ago from M floor of The Royal Hallamshire Hospital in Sheffield, where I was transferred to be investigated and treated at their very efficient Pulmonary Hypertension specialist centre.

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About four years on and I am thankfully less monitored than I was at the start, my outpatient appointments were every three months, where I had ECG, chest x-ray and the shuttle walking test. Now my last one was probably in November 2015 and I’m not complaining. I also get yearly cardiac MRI scans and right heart catheterisation.

I have remained steady on oral medication; ambrisentan 10 mg and tadalafil 40 mg every morning along with aspirin and my various other tablets. When I say I remain stable, I mean my exercise tolerance is reduced by my shortness of breath due to pulmonary hypertension but not enough to need a blue badge yet.

I am unable to walk a mile without stopping and being short of breath multiple times and attracting the concerns of passers by. I don’t feel anything other than just needing to breath fast but to a bystander I appear alarmingly unwell, so I tend to drive everywhere I need to go, find parking as close as I can and take a gentle pace.

I have CPAP at the insistence of my Pulmonary Hypertension doctors and I have had stable asthma since my last and only admission in August 2011. I have regular CPAP review and checks and I see my practice nurse once a year for asthma and diabetes check. I also see a diabetic consultant once a year at my local hospital.

My biggest bugbear, at forty-two years of age, is taking the list of medications that I do. It’s a lengthy list, which I put into weekly pill boxes to make sure I take them all. This is also handy to work out which ones I’m running low on. Repeat prescriptions are a nightmare unless I pay attention and plan ahead. My pulmonary hypertension medications are not issued by my GP and so I arrange delivery monthly from Healthcare At Home.

My morning medications are photographed below. I also take evening medications which are half as many in number. Why does it bother me? I have been taking a polypharmacy of tablets since I was 32 years old and in the last ten years the medications have fluctuated and grown and there’s talk of more tablets being added to control my ever worsening diabetes as well as warfarin for anti-coagulation, which I have consistently declined so far.

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I already have monthly liver function blood tests due to taking ambrisentan, the thought of daily or weekly bloods for warfarin is not an attractive prospect.

I am grateful that my pulmonary hypertension isn’t more serious and affects me marginally all things considered and despite the minor inconveniences of being on numerous medication I remain quite well overall and for that I thank the NHS.