Who would have thought macaroni cheese could be so lethal?

Woke up today in much the same mood as yesterday, feeling very tearful, and achy.  I made some really bad choices yesterday, which I paid heavily for last night; the   echoes of which are hanging around this morning.  Because I was feeling so low, the weather seems to have worsened and the temperature plummeting I was in need of something comforting to eat and decided (against my better judgement) to have some macaroni cheese.  Its been a long time since I’ve had this, especially made with real pasta and not spelt pasta.  I made a big casserole dish, planning to have as a side order with some salmon, somehow I omitted the salmon and ended up with a ginormous plateful of macaroni cheese on its own.  I admit whilst eating, it was delicious however, I quickly realised I’d made a mistake and spent the entire evening sipping hot water to help with the indigestion and bloating it gave me.  When will I learn??  When am I going to start taking better care of myself and stop giving in to flights of fancy, after all I always suffer more in the long run.   As I sit writing this having taken  Co-codamol to ease the pain and had a long chat/cry with my patient and put-upon husband, I am feeling a bit better.  I know I’ve got to stop all this mithering, take affirmative action (wow, that sounds powerful) and start living my life in the real world and not in my head.  To that extent I’ve decided to start the Pregabalin tablets I was given by the pain management team and re-visit LCHF (low carb high fat) as a lifestyle choice.  Last week I pondered whether or not to take the Pregabalin due to fears of gaining more weight, trouble coming off them and general anxiety concerning  worsening of my symptoms.  I realise I’m in limbo at present and by taking the medication I will find out 1) they don’t make any difference or 2) make me worse (in which case, I stop them) or they can 3) help make things better (a good thing).  I have also given myself an initial 6-12 month window for taking them.  I am hoping they will take the edge of my pain, helping me mobilise better and hopefully start doing things I enjoy, which in turn may help with my low mood.  Win/win.  I have also got a date for my Lignocaine infusion (27 September); once again I am mithering whether to go ahead with this or not, I’m quite nervous but also think I should give it a go.  What is the point of asking for help if you never actually take it?

I’m off now to do some planning and preparation there is a lot of stuff in the kitchen that is not LCHF which needs to be used up; the Scot in me won’t let me just throw out good food so I’ve got to become quite creative to use it up without compromising the principles of LCHF too much.  However, before that I’ve got to decide whether to eat the remaining macaroni cheese and suffer one last time or force feed my husband and he can suffer for me.  Who would have thought macaroni cheese could be so lethal.

 

 

 

 

…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.

 

…huge side order of delusional.

Yet again, we are in the middle of a glorious British summer (I hope you sense the sarcasm in my words) ‘cos this summer is turning out to be anything, but glorious; unless of course you count the glorious rain.  It’s been bucketing it down for days, not continuously, but when it starts a whole days worth of rain comes at once.  Ironically, I’ve been feeling a bit under the weather myself, like I’m coming down with a cold but its not actually getting here.  I’ve also been feeling the cold, I’ve had to fight the urge to put on the heating; it’s bloody August I shouldn’t need heating.  Although, physically I’ve been feeling a little off, mentally I am in a better place than I was a couple of weeks ago.  If only I could get my mind and body to work together; on good days I’d be unstoppable but on bad days I’d probably crawl into a cave to sleep.

I need to capitalise on my good mind set; I need to somehow stop fighting against myself and somehow learn to accept my limitations, including my illnesses/diagnosis/disease.  Unfortunately, this is what I’m finding most difficult.  Somehow it is easier to accept I’m failing in some way than to believe it is because of something outwith my control (saying that I do need to take more responsibility and work at being kinder to myself).  To that end I’ve decided to embrace my diagnoses of fibromyalgia and lipoedema and try and find out as much as I can about them; find out how they affect others and learn how to manage the symptoms, if possible.  To that end I’ve been checking out other people’s blogs; there are a lot of people out there in similar positions and on one hand it makes me happy, ‘cos I’m not alone, but on the other it make me very sad; I know how hard it can be.

To some extent it is only now that I am really understanding how hard it is because I’ve been living in denial for such a long time.  I am only starting to truly understand what is meant by chronic pain; it does not relate to the intensity of the pain, but to its duration.  I thought chronic pain meant you were doubled over in agony all day, unable to move.  I had really no idea that it meant you had been living with pain for more than 12 weeks.  To that end I have been playing down my problems, just because I’ve not been living with excruciating pain every day I thought I was some sort of fraud, yet I’ve been living with pain, to a greater or lesser degree, daily for more years than I care to remember.  To be honest I think it all started when I had a cholescstectomy (gallbladder removal) in 2010.  That’s seven years I’ve felt broken.  Looking back I wish I’d never had that surgery, I feel this was the turning point in my life, when I turned from a fairly happy-go-lucky, overweight woman into a fucking, freaky, miserable, depressed old fart.  Maybe I’m being a bit dramatic here, I think it took longer than the length of the surgery to turn me into an old shrew, I think menopause in the last couple of years has only added to my problems.

Surgery was a defining moment in my life.  I remember finding it painful to move afterwards, I remember being freaked out by the scars (even though it was keyhole surgery).  I think I generally freak out about my own body anyway, I had to get my husband to take off the plasters and clean the scars ‘cos I was too chicken.  I was off work for a couple of weeks, scared to do things round the house in case it ripped up my insides.  I remember being frightened when my cats jumped on me in case they disturbed my insides.  I remember sitting up, to sleep for weeks (I still do even now to some extent) fearful of lying down ‘cos I couldn’t breathe properly.  I kept my husband at arms length for a long time over fear of pain, disturbing my insides etc.  I remember being discharged from hospital with no information, no pain killers, no dressings, nothing; is it any wonder I was fearful.  Deep down I think I wanted my Mum to look after me, but she couldn’t be there.  Not long after I think that’s when I became aware of  pain, particularly back pain, for the first time.  Initially, I thought it was as a result of my surgery and the effects would wear off.  I ignored this for a long time before realising it wasn’t going to go away.  One thing I do know is the before surgery person was very different to the post-surgery person I’ve become, I used to think anxiety, depression, chronic illness was something that happened to other people and that I was just fat.   I thought if I lost weight all my other problems would somehow magically go away; it seems I was not only just fat but I had a huge side order of delusional.