…train my cat to make dinner!

I woke up this morning in tears…feeling very low and lonely.  I’m still trying to fight off this episode of cellulitis, nothing I do seems to be helping long-term.  I’m frustrated with my GP surgery, every doctor I see (when you can see them that is – last time it was a telephone triage appointment) seems to be unable to understand 2-3 separate problems can connect to make one big problem and the solution isn’t always the standard you would have for each initial problem.  They understand cellulitis, as a condition, but not in conjunction with lipoedema; in fact, I can’t even get them to acknowledge lipoedema, they always correct me with lymphoedema (‘cos I’m fat and have large legs) and if I repeat lipoedema, they give me that look as if I’m a simpleton. No GP has ever looked it up, or taken any interest in lipoedema.  After all, how could a lay-person who suffers from a condition, no more than a doctor who has studied general medicine for years.

All I can say is I’m totally, and utterly, disappointed and frustrated by most medical professionals (except specialist nurses; they are under-rated and under-valued).  I’m not sure if it is particular to Birmingham (‘cos this place is a shit-heap), or because the NHS is being squeezed into oblivion by the Tory government, but things have certainly changed.  There is no ‘care’ in healthcare these days.  If your condition doesn’t fall into a neat little box you’ve got no hope.  All they want to do is foist their drugs, lotions or potions on you; as long as we keep profiting  the pharmaceutical companies (and their shareholders) it seems people’s lives, health and, in particular, their mental health do not matter.  I suppose this is why the internet to some extent is a life-saver.  Although it is difficult wading through the diatribe, eventually you come across some good advice, humour, support etc.  The difficulty is everyone has an idea and when you want a quick solution it can be very frustrating.

Over the past few years (prior to diagnosis) I invested in solutions to my problems by buying stuff (chi-machine, rebounder, vibration plate) or consuming strange concoctions (apple cider vinegar, gelatine, bullet-proof coffee).  All of which I am unable to determine has helped or hindered my progress, I have always been looking for a quick fix (2-3 weeks) to see or feel an overall improvement, if nothing definitive I’d go back to the drawing board (internet) and start again.  This is why I’m frustrated with healthcare provision at present, it places the onus on the patient to investigate their condition and to find solutions unless of course you are willing to take prescribed medication.  The problem I have with just taking medication, is it deals with the symptoms, but fails to acknowledge the underlying  cause.  The way the NHS is being run, because it is so tight on time, prioritises medication over any other solution and this working model is repeated over and over, so if you have a reaction to one medication they often prescribe another to deal with that symptom and if the same thing happens another medication, and another – ad infinitum.  We are encouraged to be drug addicts, but not happy-clappy drug addicts, ‘cos the pharmaceutical companies, its shareholders and the government don’t want you to feel happy in a natural way ‘cos they can’t make money off.  They want you feeding off their drugs, keeping you in just the right amount of pain and misery, so as to be able to offer you more – all the while slowly destroying your internal organs.

All I want is a meaningful discussion, not limited to ten minutes, to discuss my concerns, my fears and possible solutions – I want a more holistic approach to my  healthcare, but I’m afraid I think it more likely I can train my cat to make dinner!

Relaxing, pain-free, drug-fuelled future.

I had a consultation with Pain Management at the local hospital today, overall, I’d say it went well.  The specialist nurse practitioner was excellent.  It was so good speaking to someone who understands.  This is the first time since diagnosis I have been able to talk to someone about my aches, pains, anxiety, depression and everything related to how I feel.  I admit I was very nervous beforehand, mainly because of previous experiences with healthcare providers which have not gone well.  Today my faith in the NHS was restored somewhat by this nurse specialist.  Unlike in other consultations she took time to listen and explain about the condition, took a detailed history and was able to discuss different treatment options, which surprisingly included acupuncture.  She also provided me with a tool-kit which offered hints and skills to help manage pain and details of a support programme they offer to connect with others in the same position.  The consultant consultation was not quite so positive, although I think I was feeling quite tired and emotionally drained by then, so this may not be a clear reflection of events.  Both chaps I met were very nice, but it felt a bit more like the business end of the experience, less chat and more about what they could offer.  I came away with a prescription for Pregabalin 25mg bd, I’ve been consented for a Lignocain infusion and some acupuncture sessions.  I admit that I came out feeling positive but also a bit concerned that the treatment revolved around  medication; I’m feeling generally conflicted about the use of medications to treat symptoms rather than trying to find a cause and then treat this.  I’m also aware that sometimes it may be worth putting your principle’s aside, even temporarily, in order to see the big picture.  Having struggled for sometime now with very little relief I’m wondering if reducing the pain and easing my anxiety may be more useful in the long run.  Whatever I decide I know the decision does not have to made today, I’ve got time to do some research.  I have some concerns regarding the drugs, I do not want something which causes too much weight gain; I’m already fat enough and struggling to walk adding more weight can only make things more difficult physically and mentally.  In addition, I don’t want anything that is too addictive, I want to know I can come off them without too much difficulty.  My main concern however, is I want to know they work, some minor side effects may be worth putting up with if the damn things work.

Anyone out in blog-land who happens to read this and has some experience of Pregabalin, Lignocain infusions or acupuncture I would really welcome your advices or feedback.

Unfortunately, I’m now feeling quite drained after such an eventful day so I’m off for an early night and dream about my relaxing, pain-free drug-fuelled future.

 

Massey, Moggies and more…

I’ve been a bit distracted the last couple of days as I’ve been putting together another blog.  ‘MasseyMoggies and More’…its just a bit of harmless fun.  As I only work morning, and my poor husband has to work all day, I occasionally send him email updates from home, pertaining to our beasts.  I thought they’d be quite interesting as a blog.

Also, its been a difficult couple of days, physically.  Work has been draining ‘cos I’m in pain and finding it difficult sitting typing for five hours.  Some temp jobs are a bit more varied but this one is really boring.  I’m in the Oncology dept. which is already a difficult specialty, but I’m not even doing real typing, just editing letters typed by voice recognition software; Winscribe®.  The system is a bit shit but then again there are so many different nationalities and accents its hard enough, as a human being, trying to figure out what they are saying.  In addition, the medical terminology, names of medications, patients names etc. just adds to the difficulty.  Some of what it writes is hilarious, its a shame we don’t have more time to enjoy it, but the pressure of work is almost unbearable.  They have reduced support staff to the bear minimum whilst at the same time increasing the clinic numbers and number of clinicians.  The only reason the Trust are moving over to Winscribe® is to save money.  Downgrading the secretaries role means they will be able to pay less and drop the banding.  Its a bloody disgrace what this government, and its lackeys are getting away with.

Unfortunately, the NHS is fucked.  This Tory government has taken this country for a ride; it continues to make the top 1% richer by making the poor pay for them.  I don’t know how they get away with it.  Well I do, the world is full of stupid people who act like sheep (following the herd) and are happy to live like mushrooms (left in the dark and fed shit)!  Its quite depressing really.  I’m finding it increasingly difficult to watch or read the news; even though the mainstream media (MSM) are not reporting the truth.  There is however a lot of stuff online, but it is more depressing knowing the truth is being covered up and we are being manipulated; you almost want to believe the sanitised, white wash of the MSM because it is less disheartening.  Either way it really fucks with your psyche; to have no voice, no power and no way of changing anything is quite crippling.  I keep racking my brains to find ways of fighting back or to accept the inevitable, but I feel caught between two extremes.  I’ve always felt my thoughts are a little schizophrenic and exhausting.  

The only remedy I’ve been able to come up with so far, is to become a member of the Labour Party and support Corbyn’s vision of a more compassionate future.  Where utilities are back in public ownership and the wealth is shared.

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