Medication Mayhem Misery

Hello Friends!

Thank you all for your kind comments on my last blog which was a bit of a Pity Party.  

While I am trying my best not to wallow, it isn't easy not to.  A sad fact compounded by the events of last Tuesday afternoon.

I had a long overdue consultation, if you can call it a consultation, via video link with the doctor who is overseeing my Parkinson's treatment and management.  I say this because his title is Doctor for the Care of the Elderly.  In other words, he looks after the over 60's and does not specllialise in any one field.  I know he was seeing my dear friend for COPD, a far cry from Parkinson's.  This in itself does not instill me with confidence.  Anyhow, I digress.  The Parkinson's nurse was also supposed to be linked in to the video call but she failed to show up.  

I had to put up with the usual diatribe that I should consider moving house, leaving the area and uproot hundreds of miles away to be nearer to better care provision than is offered in my remote area.  This would also offer me better socialising opportunities {do I want that?} with no thought for the few friends I have here, or the stress that would come with looking for somewhere else to live, buying, selling, moving and so on.  Most of us have done that, would most of us want to do it when we were already not in the best of health?  Uproot our entire world where our roots run deep in exchange for pastures new?  Giving up what few friends you have and be dropped in some strange and alien community miles from home.  No, not for me, thanks all the same.

Then came the discovery that for many, many months I have been near overdosing on a tablet that was prescribed to be taken five times a day and which should have been no more than twice a day. Heigh ho, just when you think your management can't take any more twists and turns.  I take copious notes during such consultations, and during this one the Doctor made a minimum of three changes of mind as to what I should be taking and in what combination.  This is par for the course, and I wonder if it doesn't lie behind me being given the incorrect dosage instructions.

So, effective immediately, I'm now on this new, lower dose and guess what?  My tremors are now twice as bad today as they were at the start of the week.  

No one knows who is to blame, everyone is blaming someone else, and I'm stuck in the middle.  I have already started making enquiries.  I don't want to get anyone into trouble, Lord knows the department could do without that, but my faith in the system is totally shattered now.  First things first, I have been advised to request to be copied in to the results of the investigation.  Now, I have not asked for this but have been told that when any mistake is made it must be investigated,  So, Monday morning I will be in touch with them over this.  Then, I will request a complete transcript of my medications since the beginning of my diagnosis. After that I will decide how to proceed, but right now I am stuck with a team of medical providers whom I can no longer trust to do the best they can for me.  

Watch this space!

In the meantime, there have been no applicants to my advertisement for assistance at home.  This is worrying indeed.  I need help at home desperately now.  My case worker on the Direct Payments team at the Council left and somehow my case file got misplaced.  If I hadn't phoned to follow through, I would still be missing in the cracks that seem to be everywhere.

Sometimes I feel as if I am in freefall over no man's land.  It is making an already stressful time even more difficult and more stressful. 

At least I have a gardener!  We've planted up some osteospermum Purple Sun, so hopefully they'll be providing some stunning colour soon.

Until next time
Debbie xx

That Which I Hold So Dear . . .

Hello Friends!

Happy May Day!

I haven't been around for a while as I'm not in a good place at the moment.  There are times now when this horrible medical condition is overwhelming and I am hoping next week's much needed appointment will help sort something out to enable me to resume some degree of normality.

I have been trying to think what aspect of Parkinson's to address but there are so many it is difficult to know where to begin.  There are the day to day living experiences and changes, the challenges of adapting, of not being able to adapt, the financial burden {something all people with any sort of disability get lumbered with}, transportation issues, mobility issues, mental health issues, finding reliable help, even finding unreliable help, or just plain pouring out my angst and misery at the position in which I now find myself issues.  There's an endless list.  I promised myself I wouldn't wallow, but these days it is sometimes difficult not to.  Add to all of the above, the ever increasing worries over our NHS and medication shortages and a perfect storm is brewing.

The last few days have been particularly difficult with the arrival of such gorgeous weather at long last. Yet, here I sit, unable to go outside for very long because I am unable to put my sun screen on evenly, and all I can do is watch the listless clouds drift slowly by and ponder on what I would have been doing in these glorious spring mornings and evenings {afternoons are too darn warm}in what should have been the fun years of my retirement.

I hadn't planned to retire upon reaching State Pension Age, but it has been forced upon me.  My plan had been to either work a small part time job or work from home selling my makes at craft fairs or on Etsy. I was to have plenty of free time to carry on hiking and rambling across my beloved Shire.  It was not to be, ah! the best laid plans of mice and men often go awry, indeed they do, in my case they went awry and away.

It was not to be, and it is starting to become difficult in accepting that I will never be able to do again the things I hold so dear.

Oh, but what a difference in a week!  Ten days ago I sat huddled under a blanket keeping warm, now the last few days it's been a struggle to keep cool!  At 5:30 a.m. this morning, as daylight began to creep over the east facing hedge, I was opening the windows of my cottage wide to let in some cooler air, trying to keep the living room as cool and comfortable as possible before the midday heat arrives.  I've still got my vest on; I've cast not a clout but might today as it's already hot indoors.  Ironically, next week it seems we shall be glad not to have cast those clouts as colder days are predicted again.   One thing that is helping me keep hydrated is my new water bottle by Rhiannon Art

A little pick me up treat that will be useful in the hot summer days. It comes with a choice of caps, straw, flip top, or wide mouth and holds 750mls of hot or cold liquids.  Proud to be Welsh!

Until next time

Debbie xx