When I Break Free

Shouting In A Bucket Blues

Someone said this blog was me shouting into cyberspace. This song's for them.

Let It Be: Me

One of the hardest lessons I have had to learn through all this is, I can only be me.

When Jo first awakened from the 16-day coma of critical care I was there. I can still remember the look of fear and bewilderment on her face and my overwhelming desire to take all the pain away. I wished then it was me so she wouldn't have to suffer and the feeling still rises to the fore every time I see Jo struggling with the aftershocks of what has happened to her, of the cruel hand that fate has dealt her.

Today Jo dislocated her jaw, not through some trauma but by the simple act of yawning. The hemiplegia means the muscles on her left side are weaker and, as she was tired from the Physiotherapy session today, a massive yawn engulfed her and dislocated her jaw.

A very capable doctor at A&E put it back but, later on tonight, another overwhelming yawn caused another dislocation. I had seen what the doctor did and had also suffered such a dislocation myself on several occasions. Perhaps I am just a slack-jawed idiot. In any event I was able to coach Jo through the process of resetting her own jaw by yawning widely and moving her jawbone sideways while doing so.

I could see, through her tiredness, her bewilderment and resentment that this was happening to her and I realised that this was just another thing she was going to have to come to terms with; that I could not bear this for her, in fact that learning to "keep her big mouth shut", as I jokingly chided her, was her lesson to learn, not mine.

The light at the end of my garden

Last weekend a volunteer team descended on Arolla to clear out a year's worth of weeds and restore some semblance of order to the garden.

This has been organised by the almoner of my Lodge, who has also invited us to apply for funding to; finish the conservatory, pave part of the garden to allow Jo to access it in her wheelchair and widen the doorway to the kitchen, thus allowing Jo to access it from the conservatory.

In addition he has organised a lawyer to take up our case against the insurance company and is also working on funding to provide Jo with a residential course of intensive neurophysiotherapy in the Wellington hospital in St John's Wood, which has a specialist unit for neuro treatment.

Jo's GP was particularly supportive of this latter move, when we asked him for a referral letter, saying that he, "was really looking forward to it" as he was firmly of the opinion the intensive treatment would help Jo regain her independence.

Jo herself has been suffering muscle spasm in her left shoulder, occasioned by the enforced lack of mobility as the insurance company has left her languishing without physiotherapy of any kind for six months. The pain was so great she had to be coaxed to sit out in the conservatory to watch the garden team but professed that she was glad she did afterwards, the sight of her beloved garden being restored having raised her spirits.

When the going gets tough...

When this incredible journey began a friend remarked that, "It must be extraordinarily hard." Those words have stayed with me as I traverse the many byways and cul-de-sacs the events of 08/08/2008 have led us into.

It is extraordinarily hard to keep on keeping on, to keep a positive attitude and lift another's spirits even as your own are crashing through the floor.

When my own father suffered a stroke I felt equally powerless to do anything, a futility borne out of my distance from him and my mother as they struggled to cope with the devastating effects of stroke.

Mother used to phone and I could hear the weariness in her voice. Then she would put my father on the phone while she went off to busy herself with what I now know are the unseen aspects of caring for someone: preparing meals, washing clothes, doing the housework or the garden. All those normal activities that are suddenly a burden because you are doing them alone, your partner being unable to perform those mundane tasks alongside you and so turn them from chores to shared experiences.

While my mother was doing this my father would unburden his soul to me. He would tell me how he only felt half the man he was, how the holes in his mind and his memories had diminished his sense of himself. I came to realise that this was now my role, to bear witness to these dark depressions and, in sharing them, lighten his load a little. I soon learnt that he kept these gloomy thoughts from everyone but me as he struggled to lighten the burden upon my mother, to keep a cheery face for her and my sister.

I now know his loneliness only too well. I cannot share my moments of despair with Jo and if I unburden myself to anyone else I only increase their sense of frustration and powerlessness in being able to help me cope.

Truly we live this life alone and all we can do is keep going.

The Battle of Nevermore

After a 5-month hiatus, when we received no communication from the insurance company and all efforts to evince a response from them were met with a promise "to get back to you", they finally communicated that they would not be funding any more treatment. The reason given, that, according to a report in November last year, Jo's condition was at that time "the same as it was before the accident" is damning for a number of reasons:

1. We never agreed this as a success criteria. Given the damage to Jo's confidence and the delay caused to her rehabilitation I have always been clear that they need to recover the ground lost.
2. If anything was to be restored to the condition it was before the accident that was Jo's confidence. That has not been done, largely due to the drip-feed nature of the way they have doled out treatment.
3. The prevarication by the insurance company last year in meting out further treatment led directly to Jo's pressure sore and pulmonary embolism, the latter caused by DVT. Both these afflictions were a result of enforced immobility while waiting for a decision from the insurance company on further treatment, regressing Jo's physical condition.
4. The further hiatus this year has led to Jo being without any treatment for 5 months as the NHS physiotherapy cannot resume as long as private treatment is still extant.

We must now take the matter to court and I am currently searching.for a decent lawyer to battle on our behalf to ensure Jo is nevermore left to languish.

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I must have killed a Chinaman..

... in fact a whole gang of them.

The builder doing the conservatory was due to finish it today. When he hadn't arrived by 10:30 I texted him, whereupon he replied that he wouldn't be appearing today as the transmission in his van was broken. Entreaties to beg, borrow or steal an alternative form of transport seemed to fall on deaf ears.

The insurance company dishing out Jo's physiotherapy finally responded to my calls after 5 months, loftily prounouncing that treatment had ceased as the physiotherapist was supposed to have reported that Jo's condition was now as it was before the accident. When I asked for a copy of the report I was curtly informed that it was confidential.

That is not what we agreed to and is not what we were informed she would report by the physiotherapist, the latter of whom was unavailable to confirm or deny this diagnosis. No one had informed us that treatment had ceased, the insurance company claiming it was the physiotherapist's responsibility to inform us.

This is deeply concerning as NHS physiotherapy had ceased on the commencement of this private treatment but will restart as soon as we inform them that is the case. Obviously precious time has been lost.

I fully expect to find China's population to be decimated should I ever visit there again.

Seve Ballesteros - RIP

Jo and I awoke to the very sad news that Seve Ballesteros died in the early hours of this morning after a protracted battle with cancer of the brain.

Seve collapsed at Barcelona airport just two months after Jo's unsuccessful operation and, even though his condition was different from Jo's subarachnoid haemorrhage the part of the brain affected and the successive operations Seve underwent were sufficiently similar for us to feel empathy with someone we both already admired as a someone who, as Jo said this morning, "made a game of golf enjoyable to watch."

As BBC golf commentator Peter Alliss said, "When Seve was in a good mood the world was happy. I will always remember that smile."

We will always remember you too Seve. RIP

I get angry...

...because if I don't get angry I'll cry and if I start crying I'm afraid I may never stop.

I turn that anger into action of course and thereby avoid wallowing in self-pity and actually get things done although it is hard.

Currently the conservatory, which should have been completed a year ago, is still languishing in a semi-completed state. The builder claimed the panels he had delivered to finish the job were, "the wrong white." I suspect the truth is he has been a victim of the recession the Coalition has pushed us into and that attempting to balance his cashflow us the real reason for all the delays of the past year.

The insurance company providing Jo's rehabilitation is prevaricating yet again. They are trying to say that the complications Jo experienced over Xmas; the pressure sore and her pulmonary embolism, were pre-existing conditions which are preventing her recovery. The truth is their tardiness in approving a further treatment last year is what increased Jo's immobility and so led directly to the pressure sore and the DVT that caused the clots which lodged in her lungs.

Walking backwards for Christmas...

..that's what it feels like with all the setbacks Jo has suffered. She can barely stand, let alone walk and we are waiting, yet again, for the insurance company to approve more treatment.

Somehow, this changes everything...

There's a phenomenon known as synchronicity, first described by Swiss psychologist Carl Gustav Jung in the 1920s, wherein two or more events, that are apparently causally unrelated or unlikely to occur together by chance, are observed to occur together in a meaningful manner. There is an interstice between synchronicity and chaos theory, wherein the flap of a butterfly's wings are held to cause a tornado in Texas.

When Jo first suffered the ill effects of her brain operation in 2008 there appeared to me to be the same sort of relationship between the life-changing events in our lives and those in the world at large. Jo's period of critical care, where her life literally hung in the balance and the subsequent dawning of the negative effects of her brain operation, took place against the backdrop of the looming financial crisis and the election of the first black president of the United States, both very significant occurrences and it was hard for me to separate the portentousness of them from the massive changes taking place in our two lives.

Now, for the first time in just over two years, Jo is back in hospital, fighting off multiple infections in her lungs and urinary tract and a pulmonary thrombosis. This time the backdrop is the "Jasmine revolution" in Tunisia and the subsequent revolution now being played out on our television screens in Egypt.

I cannot escape the ineffable feeling that this is a positive portend, both for the future of the world and for Jo's rehabilitation. Just as the pundits are saying about Egypt, I am not sure how this will change things but one cannot deny that this changes everything.

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Bloodclots!

Bloodclots have caused a fraught weekend. On Saturday morning Jo complained of pain under her right breast, running up to the armpit. Breathing was painful and she was flushed of face with an elevated temperature.

I dialled 999 and an ambulance was at the house within five minutes, with a paramedic in attendance. An ECG test confirmed this was not a heart attack but, as the pain was persistent and Jo's breathing obviously laboured we agreed she should go to hospital.

Once there an examination and chest X-ray showed fluid on her lungs. Further tests, including a CT scan of her chest were then conducted to try and find the cause.

Because the radiologist had gone home by this time it took until 3 o'clock in the morning to determine the cause of the excess fluid was a series of blood clots in her lungs. These had probably been caused by her being immobile for so long over Xmas. Warfarin and Heparin have been administered to. thin the blood and they will be monitoring that over the next few days. She is also on water tablets to reduce the fluid in her lungs and antibiotics just in case any infection should creep in.

All in all a tense weekend and we are not out of the woods yet. Jo will need further tests to make sure the clots have been cleared and there is no underlying condition.

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Under Pressure

The extended time Jo has spent in bed for the last two weeks due to her infected finger has resulted in a nasty pressure sore on her sacrum. So far it is a stage 1 pressure sore, which means the wound hasn't broken the skin but there is a build up of pus there.

Jo is now feeling well enough to get up so hopefully the increased activity of transfers will stimulate her circulation and bring blood to the sore and thus help to disperse it. She is also sleeping on her left side to keep the pressure off the affected side and, as well as aiding the healing of the bedsore this should help to stimulate awareness of the left side of her body.

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The moving finger

Our Xmas has been marred by what appears to be an infection in Jo's right index finger. It began on Xmas Eve and at that time we assumed it was gout, as it manifested as a reddish swelling on the knuckle.

It laid Jo low on Xmas day and sapped her strength such that I called an emergency doctor on Boxing Day. By this time the swelling and redness had progressed toward the wrist. The doctor's diagnosis was infection and she prescribed 1,000 mg a day of fluxocilin.

This has rocked Jo even more but the swelling does seem to be abating. We shall see if the moving finger of fate, having written another chapter, moves on.

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Fiat Lux

Jo and I would like to take this opportunity to wish everyone an enjoyable festive break.

Although there has been a large break in Jo's rehabilitation occasioned by the physiotherapist falling ill after her return from holiday Jo does seem to be making some physical progression. Her confidence is still the main thing and we plan to work on that together over the holiday period with simple stands and walking on the spot.

Although the outlook for next year is bleak and I shall have to devote more of my time to earning some much-needed money we remain positive.

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Making Changes

After a five-week hiatus, caused by the insurance company taking that length of time to process the paperwork for further treatment; something they promised would take five days, Jo's physiotherapy resumed today.

Given the length of time she had been without walking Jo proved to have actually gained some mastery over her errant left leg. Her confidence and muscle tone have suffered though and she got tired earlier and experienced a few moments of anxiety when attempting transfers or negotiating a threshold.

On balance though the progress was pleasing and, with the carers finally beginning to walk her daily we hope she will achieve her immediate goal, that of walking with the assistance of one person and the zimmer frame, within three months.

Thereafter the next goal is walking with the aid of a three-legged stick. As the person assisting her in the immediate goal is solely there to keep Jo's left hand on the zimmer frame, this next goal obviates the need for that person except as psychological support and will be a big step change.

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Majik Thornton Brown - 1988-2010 RIP

Our companion of 22 years sadly suffered a stroke this morning, caused by a massive brain tumour. He was peacefully put to sleep and a sadness has descended on our household. He will be missed.

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Mind and Matter

We have another week's hiatus in Jo's rehabilitation as we await the insurance company's approval for further treatment. Hopefully the revised care plan will be put in place this week and Jo will be walking every day from her bedroom to the bathroom.

Jo is now remembering her struggle with death in August 2008. The memories are brief, disjointed and painful but very clear. Perhaps this is part of the reawakening of the brain that the neurologists seemed to think was a possibility back then? Certainly it seems concurrent with further subconscious action driving conscious action.

When Jo is asleep in her chair her left leg lifts up, the left foot is turned up at the ankle and then the foot is placed down on the floor in a deliberate fashion that is more assured than her waking mind can muster. I fail to see how the physiotherapists and neurologists can dismiss this as a reflexive and involuntary action and it seems to vindicate my thesis that the thoughts and actions start in the subconscious mind and are then manifested in conscious thoughts and actions.

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Well done Jo

Today was an important day for Jo. Her care agency were here to assess Jo's walking and transfers in order that they might assist her with both on a daily basis. This is important because frequency is the key to effective rehabilitation.

Beforehand Jo was apprehensive about how well she would perform these tasks as the pain in her feet from the increased stiffening of the muscles has been quite intense of late. So much so that Jo was unsure if she could even stand, let alone step.

Credit must go to Jo's carers, who took the extra time this morning and made the extra effort to coax Jo into standing.

This had a remarkably efficacious effect on Jo's confidence and, once the physiotherapist and care assessment assistant arrived, Jo managed the crucial walk from her bedroom to the wetroom and the transfers from her glideabout to the chair with aplomb.

The care assessor has therefore supported the carers assisting Jo with these on a daily basis, which is sure to help Jo become more mobile more rapidly.

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Discombobulation

After a week's hiatus, occasioned by what seemed to be a recurrence of the gout that last plagued her in July, Jo's physiotherapy resumed today.

Late last week our GP paid Jo a home visit as the steroids used to treat the gout did not seem as efficacious as before. After a physical examination of both feet he determined that the bio-mechanics of Jo's feet had been affected by the prolonged inactivity and Jo would need the specialist attention of a podiatrist to rectify this.

The physiotherapist conducted a fairly thorough examination today and concluded that there is muscle and tendon distortion on both feet, caused by the afore-mentioned inactivity. In her right foot it is aggravated by an old injury dating from her childhood, a broken big toe. This makes her big toe point upwards and thus affects the balance from the instep to the ankle.

In her left foot the muscles and tendons on the left side are stretched and those on the right shortened. This is why her foot at rest and when standing tends to roll over onto the left side of her foot. The pain on the left is further aggravated by the neuropathic pain.

Rectifying both requires Jo to undergo considerable nausea-inducing pain as she force stretches the muscles and tendons in each foot. A splint on her left leg may help but there is no way of avoiding the pain.

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