I am just well-upholstered…

My euphoria, sans Pain Management appointment, was short-lived.  I’ve had a sore leg for a few days/weeks (I’d scratched it on the shower screen a few weeks ago) which hasn’t got any better.  I suspect cellulitis, as well as a particularly annoying varicose vein, so I attended the walk-in centre at the hospital after work.  The lady I saw was again, very good; she was patient and took time with me.  She checked my heart beat, lungs etc.  but when it came to the blood pressure my heart sank, I always have problems getting my blood pressure checked because of the lipoedema in my arms.  It is excruciatingly painful.  Despite my best efforts to pronounce lipoedema, (I think most health care professionals only hear lymphoedema), and explain I am better with a wrist monitor, she proceeded to use a small cuff on my forearm.  I thought, maybe it wouldn’t be as bad here as in my upper arm, WRONG, it was excruciating, I’m sure she looked at me like I was over-reacting, or over-acting.  I let her continue despite the pain until a reading was reached; 160/105mmHg.  Too high, she said.  (That’s because I was being tortured, anyone’s blood pressure is bound to rise under those conditions).  I checked later on and there is a distinct bruise, on my arm, where this torture had occurred.  I’m not really complaining, I think overall she did a splendid job, in comparison to other healthcare professionals I’ve come across.  Lo and behold, my own diagnosis was right, I have got cellulitis and she has given me antibiotics (Flucloxicillin) for a week, she also said I should go to my GP about my varicose veins.  

This goes some way to explaining why I’ve been feeling generally quite low and run-down, I thought is was mainly due to having a busy week and not being able to rest as much as I’d like.   Hopefully, the antibiotics will kick in quickly and I’ll start to feel better, I’ve booked next week off work and although I’m hoping to rest and recuperate a little,  I am also hoping to get a few things done around the house.  I need to feel a bit more on top of my game for that as housework is already a struggle when you are living with lipoedema, fibromyalgia and are a buxom beauty (trying out positive affirmation to help my mood).

P.S. – I just looked up buxom out of interest in the dictionary/thesaurus and was quite tickled by the synonym “well-upholstered”, I may just use this expression in future in place of fat, which has become such a derogatory term.  From this day forward, I shall proclaim loudly, “I am not fat… I am just well-upholstered”.

 

 

 

 

 

 

 

 

 

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.

 

Good old British summertime…

It’s Friday evening, time to breathe a huge sigh of relief at having gotten through another week.  I can’t believe I’ve had to put the heating on ‘cos its so cold and damp; its ruddy August – British Summertime!! What a joke.  I can’t believe a couple of months ago I was complaining ‘cos we had a three day heatwave now it feels like winter has come early.  I only hope we have an Indian summer, I’ve yet to be able to sit in the garden, or fire up the barbecue.

On a positive note, I’m feeling relatively upbeat having checked out some blogs relating to fibromyalgia.  I no longer feel laden down believing I’m some sort of fraud, neither am I convinced I will never have another dark day.  Its been nice to hear other people put into words how I feel physically and mentally.  Just knowing I’m not alone has perked me up even though as I sit writing this my back, shoulders and legs ache, I’m yawning so widely I feel I could swallow my own head and I feel so exhausted I could sleep for a week.   I’m fighting the urge against going to bed because I’m hoping when I eventually get there I will be able to have a good, deep sleep and feel refreshed in the morning.  I say hoping ‘cos I don’t know how long its been since I had a good, deep and refreshing sleep.  I’m not complaining too much just now ‘cos compared to a few months ago at least I’m getting better sleep.  Two things make sleeping difficult; 1) I need to pee at least 2-3 times a night, doesn’t seem to matter how much or little I drink I still need to get up and pee.  2) I can never find a comfy position for too long.  I am constantly changing position and the number of pillows and cushions I use to help me.  Sometimes, its better if I sleep in an almost sitting position but then my back or legs begin to ache, sometimes I’m lying down and my shoulders and arms begin to ache.  Often I sleep on my side with a pillow between my legs (did I mention I’ve had severe coccyx pain for years) and cuddling another pillow.  Each position offers its comfort, but not for long.  I can usually tell if I’m going to have a bad night and I end up taking a pain killer (Co-codamol) before going to bed, I think it has become a habit and I’m not sure if I get any real benefit from it anymore, other than it helping me to relax.  Some nights I fight the urge to pop the pain meds and end up waking in the night in more pain than usual.  Catch 22.

Tonight I know I’m going to suffer, we’ve decided to have a little treat, Indian takeaway for dinner; my favourite, chicken tikka masala.  The main problem being its so delicious, I never know when to stop eating; especially fresh naan bread.  The main problem some foods are so delicious its hard to give them up.  Anyway, decision has been made and now I just have to live with the consequences – hopefully they won’t be too bad!

 

…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.

 

 

Throw-back…

Exhausted.  Achy.  Feeling bloated.  Lethargic.  I could sleep for a week.

This week so far can be summed up, thus!

I’ve struggled, big time, this week.  It’s not been too hot, but I feel worn down by the heat somehow.  By the time I finished work today I was almost screaming out in pain.  Not the type of pain that is instant and excruciating, but the kind of pain that wears you down ‘cos its been around for weeks, gnawing at your psyche.  Its difficult to explain.  From the outside I’m a big, fat, lumbering old fart.  Nobody should have any sympathy for me, its all my own fault.  I’m fat because I eat too much (not true); I’m sure that’s what other people think.  That’s what one half of my own being thinks.  The other half doesn’t think, its too busy working to keep up the pretence.  The pretence that I’m alright.  The pretence that I’m coping, still able to function as a normal human being.  The pretence at being happy, content.  Somewhere in the middle of these two halves is a molecule of love, respect, compassion, sympathy, empathy … all the things I give to others relatively easily, but which I find difficult to give to myself.  I feel unworthy.

I don’t know if I understand love, respect, compassion etc. or should I say I’ve never felt love, respect, compassion etc. from anyone else.  I hear the words, but I don’t feel them, I don’t feel the emotion behind the words coming from anyone.  Is that normal?  Are they just words? Is that why I don’t know how to do it for myself.  Growing up I thought love was being given something you wanted, whether it was food, clothes or stuff; something other than the mundane.  Dinner was just dinner, but when I got my favourite meal (cauliflower cheese) it was given with love; I’d get cauliflower cheese on my birthday, but other than then it was a meal hardly ever had.  Take clothes, of course I had clothes when I was wee, but they were everyday clothes, hard-wearing and boring.  There were no pretty clothes; perhaps one item for best, but otherwise they had a purpose, to cover your ruddy body; not to be loved or to make you feel good.  Clothes were utility.  And stuff, I got stuff I needed for school, the occasional treat, but I never got the stuff I actually wanted; perhaps once, I did get a cassette recorder (see photo) one Christmas, which would get confiscated when I was naughty. I remember it being confiscated a few times, but I can’t think of anything I did, at that age (probably around 11 years), that was so naughty.  I ruddy loved that cassette recorder.  I think this was when I started to love things more than people…when I realised things didn’t let you down the same way people do.

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I don’t know if, how I am, how I think of myself and how I treat myself are a throw-back from my childhood, or as a result of an overactive, under-stimulated, depressive mind.  All I know is I feel sad, empty, lonely, angry, resentful and achy most of the time; I think living with Lipoedema and Fibromyalgia just adds to this ‘cos when I feel run down, from trying to function properly, my internal voice seems to ramp up its constant criticism of everything and everyone.  I wish I could find a way to switch it off.  I am hoping that by writing these things down it will help, but even then my little critical voice inside is still chirping away…

 

…scum of the earth.

For those who don’t know meine dunkleheit is german for ‘my darkness’.  The title is a little ambiguous; perhaps relating to my dark innermost thoughts but also giving a wee nod to my little dark friend Izzi (whom I affectionately call Der Kleine Dunkle).  She is by no means my only little friend (she’s just the youngest) she has three siblings; Remi, Mili and Popi (you’ll read more about them later).

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Izzi

Izzi is just over two years old and she’s a rescue cat.  We rescued her from the South Birmingham Cat’s Protection homing centre on 26 April 2015.  She is a very strange wee cat; very independent and determined.  She loves being outside and recently due to the long warm and sunny days we have hardly seen her save for a few minutes each day when she comes in for food.  She seems a very happy and contented wee cat.

I wish I was as happy and contented as wee Izzi… this week has been particularly difficult because it has been so hot; a British heatwave no less.  These heatwaves generally last 3-5 days but what makes them so unbearable is how quickly the temperature rises from around 15° shooting up to 28° almost overnight.  Also, in the Midlands (because we are land locked) there is no air, not the slightest breeze and the air feels heavy, like treacle.  Its hard to breathe, especially at night.  The slightest movement has me sweating profusely.  I seem to sweat out of my head therefore my hair always looks frizzy.  To be honest, I’m not so bothered about how I look its how I feel, exhausted,  swollen, achy and damp.  Also, I am quite overweight and have lipoedema and fibromyalgia; two conditions which do not tolerate the heat well.  More about that in subsequent posts…

The news this week has focused on the Grenfell Tower disaster and the aftermath of the general election.  I have read so much about both I feel sort of numb.  The Grenfell fire was horrifying, but not nearly as horrifying as all the ‘hearts and flowers’ bollocks that has been going on since.  It never ceases to amaze me how charitable and kind people appear to be after an event.  Before this fire, nobody seemed to gave a shit.  They still voted for the ridiculous policies of the Tories, but now everybody and his dog sees the logic of the Labour party under Jeremy Corbyn, and are preaching his policies as if they agreed with him all along.  People change their opinions and standpoint only when they are scared other people will think badly of them or they want to somehow further their own agenda/popularity or appease their own conscience.  Fucking Simon Cowell and all the other human detritus with their ‘song for Grenfell’ – it makes me puke.  They have to attach themselves to other people’s suffering for good press because they are the scum of the earth.