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. 

(Not Successfully) Avoiding Joyless January

After the warm festivities of Christmas and New Year, I often find myself experiencing a bleak void in January. The weather is grey and dismal. It’s cold and wet and extremely easy to follow thoughts that make you feel ultimately bereft.

Procrastinating over stuff that happened more twenty years ago is pointless, but something I actively need to guard against. Unfortunately, due to bad timing I’m also reading a hard hitting novel, which is giving me nightmares. 

Every problem seems momentous and I feel easily tired and have a banging headache. The tiredness in my case could be attributed to a dozen things affecting my health., but this would just be pedantic. I have had to spend a lot of time alone and I’m sure this has had an adverse effect on my mood. 

My sleep is erratic and sporadic and I have uncharacteristically stopped using my CPAP. I just don’t have the energy to do the maintenance etc.

Imminent is my appointment with the heart/lung transplant assessment clinic. In fact when this post is published I will be a few hours away from sitting in the outpatient area for transplant assessment. 

I’m not sure how I feel about needing a referral to such a department. No one expects to need another organ and is it such a big deal in this day and age? 

My questions could be rendered null and void tomorrow after numerous tests I really don’t want and an answer I have no idea how to anticipate. I feel the appointment will be a weighing up of my worth, in general, as a human being. 

It’s odd to feel depressed and dejected knowing exactly why and seeing a pattern in your moods but being detached and watching yourself endure it as an indifferent observer. 

(Possibly) Last Blog Post of 2016

This year has seen a modicum of uncertainty that my previous years as a blogger did not encounter. This has been largely due to my worsening physical health, which has been seen in the fewer books I have read this year, 210 as opposed to 235 last year. Even as I write this post I am aware 24 hours ago I was quite ill and couldn’t finish the book I had scheduled to review before 9 a.m.yesterday. I also haven’t been able to engage social media or the blogging community as much as I would have liked but I have immensely enjoyed reading the various blogs I have felt up to this year.

In the event I am unable to post a book review between now and New Years Day, I thought 2 a.m. on 31st December 2016, was a good a time as any to write a little insurance post, so as not to let the ending of 2016 and my four year blogging anniversary go unmarked.

I am seeing the year out with my husband who will be unusually home to share the evening TV line up with me. Our days of raucous partying was over years ago. More likely than not it’ll be green tea and mint Matchmakers with a cat each on our laps, which suits us both fine.

Despite the celebrity losses, Brexit, and various disappointments I have shared with my fellow man, it has overall been a good year for me. I discovered two things I thought I had lost: happiness and gratitude. I think it virtually impossible to have one without the other and as I go blindly into the abyss that is 2017 I do so with an overwhelming sense of gratitude for everything. 

The year will start with my fast approaching appointment with transplant assessment clinic, which on paper sounds like quite a tiring day of medical scrutiny. I was hoping not to think about this so soon, but any illusions of further delay were extinguished when an appointment letter arrived a couple of days ago. My OCD and resulting competitiveness will mean I will be attending as if competing in exams of yesteryear, but I’m not sure I want to win any prizes in these tests.

I’m hoping I learn to take it at a pace that allows me to keep going next year and do all that I plan to do. Wishing everyone a Happy New Year! 

Point of View Differential

When it was first mentioned to me in Autumn this year that I was going to be referred to an organ transplant team, I didn’t think I would see anyone until 2017. Maybe Spring 2017. I’m not complaining or dissatisfied in any way with my pulmonary hypertension care. This isn’t my first rodeo. I know referrals take an age. I still have had no news from the endoscopy unit regarding the OGD I am being considered for and that referral went in September. I was surprised to be sent an appointment to go to the Pulmonary Vascular Diseases Unit in December having already seen them in October. 

Not sure why I was being recalled, I assumed maybe they wanted to do a right heart catheter. However, I left feeling maybe I wasn’t totally clear on how precarious my health is at the moment. Two things in particular made me anxious; the offer to start nebulizer iloprost, which I declined as I felt too well to jump to the next phase in treating my PH and the follow up request to the transplant team. As always I was reminded I could call the unit at any time if things deteriorate.

As is sometimes the case, the day I was in clinic, from my point of view, I felt better than I had last time I came to the clinic. I did still have to stop three times on the way to the PVDU from the hospital car park, but I had no nagging cardiac chest pain. Despite the sleepless night before, I felt well. I was happier with my shuttle walking test and felt I had improved, maybe not significantly as far as numbers go to anyone else, but enough to not make any clinical decision regarding any change in my treatment imminent. Enough to make it feasible to park somewhere not too far from disabled spots and walk to my destination. After all, I managed 260 yards. That’s 60 yards more than a relatively well blue badge holder.

However, reading this month’s clinic letter I’m marvelling at just how different my perception as a patient is to the experience of my symptoms compared to the clinician I see. My 30 yard improvement in the shuttle walking test, which I saw as a personal triumph, was described as “similar” to my previous score of 230 yards. There was an overall tone of precaution in the letter that sent my over-analytical mind into hyperdrive.

I still think it’s absolutely implausible, if not impossible, to get into seeing anyone as a new patient in clinic in 2016, as we are so close to Christmas. However, I suppose it should be business as usual despite holidays officially. But it’s not like I need a transplant this year or next year, is it?  Why the hurry? 

As a patient,whose symptoms of pulmonary hypertension aren’t as good as last year my instinct is to hibernate until Winter is over, but luckily my fatigue isn’t shared by the clinical team, who behind the scenes are planning their next moves in terms of my treatment. With a great deal of effort I have convinced myself there’s nothing to get anxious about. After all being prepared is good. However, the nagging chest pain has been back in the last 24 hours and I’m beginning to wonder what those minor ST changes in my ECG anterior chest leads were. It’s not that minor, when it’s your ECG. 

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.

Taking Responsibility

As my mental health deteriorated so did my ability to care for myself. If you think about all the things we need to maintain to live that’s a significant game changer to find yourself unable to work, leave the house or routinely shop for food/cook and pay bills.In hindsight I would say that I fell and I was fortunate to have someone there to catch me and cushion that monumental fall.

Now, ten years on I can take responsibility and do so with pride when I look back and see how far I have come in the last troubled decade. I got back behind the wheel and now not only drive myself locally but volunteer to drive places further afield. The basics may be staple for most others but for me overcoming the red tape in my head is matched with dealing with worsening shortness of breath from my deteriorating pulmonary hypertension. 

I had a good run for a couple of years where my mental health improved and my physical health remained stable, but now my physical health seems to be flagging and my mental health in comparison is the best it has been for years. This is just as well considering the choices and hurdles I face as my limited physical abilities become more restricted.

I am in, what I call, a no man’s zone; I can walk a maximum of 230 yards without having to stop due to chest pain and breathlessness, but I do not qualify for a blue badge until I can no longer walk 200 yards. In the meantime I have to find ways to get from my car to whichever destination I need to go with minimum physical exertion so that I am practically functional when I get there.

The temptation to stay home is overwhelming, but I have worked too hard to get to this feeling of independence and security to let it all just go. From ordering and collecting my monthly medications to going to the dentist, library, hairdresser and multiple medical appointments, taking care of myself is a full-time job and one I cannot afford to lose for my mental well-being. 

It is a limited and fruitless existence to not learn new skills, which is why I’m learning about business management and economics, things I have very little idea of so I may have a challenge and important roll in my household. It took a while but realising that I have to opportunity to choose an occupation again and indulge other interests to an extent to change my life and outlook has been daunting and exciting. 

Maintaining a decent lifestyle has been fundamental in my psychotherapy and is the foundation of how I make choices relating to my physical health. After all, I need a reason to keep physically well and without that motivation I would find myself in a deep dark tunnel of despair I left behind a while ago. This is not to say I don’t suffer from bouts of anxiety and depression, but I no longer live there in a bleak and pessimistic climate.

The number of yards I can walk, books I can read a week or stress I can endure may change but the biggest change is finding a reason to want to do anything at all, when life takes on a grey shroud of unhappiness, that I did not think I would ever shift. Finding joy in anything was my struggle and on reflection I now find joy in many things. 

(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. 

Choices: When the Experts Do Not Agree

As unwell as I have been feeling over the Summer of this year, things came to a head when I went for a routine outpatient visit to The Royal Hallamshire. I honestly felt exhausted after a sleepless night and my symptoms of confirmed anaemia since early July this year. 

Blood results confirmed my anaemia was ongoing, microcytic but no worse since July. My shuttle walking test was probably the worst one I have ever had and I had to quit the test when I developed chest pain.

Yet despite these negatives, I had a productive and frank discussion regarding investigations, my concerns regarding my current CPAP and the results of this summer’s sleep study tests.

What struck me at this clinic visit was how I was the only person placed to describe the impact of my symptoms on my life. Only I could decide whether the rigmarole of CPAP was worth the effort of upkeep of the machine and when the consultants seemed to disagree over the management of nocturnal hypoxia I had to decide which opinion made the most sense to me.

I could understand why putting me on oxygen overnight is a big step and once oxygen therapy is initiated it is not likely to stop and may cause complications in future. It makes me dependent and disabled in a way I am not if it remains uninitiated.

However, if the hypoxia I experienced overnight remained above 90% oxygen saturation I wouldn’t be considering the effects as seriously. My oxygen saturation drops to 87% in two to three periods of thirty minutes overnight. It makes sense to me that anything below 90% saturation is not a minor drop of oxygen saturation and nor is it likely to improve, but more likely to worsen as time goes by.

Based on the results of my sleep study, the results of which have not been seen by any of the Pulmonary Hypertension consultants a the improvement on initiating CPAP in my two week trial, I am of the opinion that I should continue CPAP and discuss nightime oxgen again with the respiratory physician at sleep clinic. As adamant as one consultant was that i should stay away from oxygen, another was concerned about the long term effects of hypoxia on my pulmonary hypertension.

As a patient who tries to be as accommodating as possible I feel awful that by making a choice I will be going against the advice of one or another consultant whom I respect and have allowed to guide my choices in managing my PH thus far, but I also have a responsibility to take ownership of my chronic illnesses and make choices in my best interest in the long run. I feel an overwhelming amount of guilt about taking up time over an issue that is not directly life threatening or immediately critical, after all, these same consultants have to make decisions about patients in ITU and HDU, where as i am at home and relatively well.

However, I brought the issue of somnolence up because it is affecting my quality of life and I am more inclined to rely on the opinion of the consultants who are directly informed of test results in detail and are more likely to react to those results within my understanding of disease management, so once again I will darken the doorstep of sleep clinic but this time with informed acceptance of commencing oxygen therapy overnight.

There’s no going back from requiring oxygen therapy once started and currently I feel so unwell and low on energy that I am willing to do anything to have my old energy levels back. Never in three years has my reading and physical activity been at such an all time low.

I am hoping with the aid of oral iron and oxygen I will feel more enthusiastic and less drained of life in the coming months. I also have an endoscopy to look forward to, as with most things in medicine, the possible positive outcome comes with a prerequisite modicum of discomfort.

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.