How do I stop the screaming in my head. For the last 20 minutes its been constant. I despair sometimes, wondering if I’ll ever be alright again. I don’t mean physically, I’ve accepted that’s never going to happen (although accepted is far fetched, grudging acceptance may be closer to the mark). Mentally I feel worse than I do physically, especially today. The day started much like any other; got up, showered, dried my hair, had breakfast etc. I was not working today as I’d booked the day off to be with my husband, at his suggestion. We’ve spent a lot of time recently de-cluttering, what a fucking thankless task that is. Feels more like swirling around in all of your belongings, being reminded of the hopes and dreams you once had, only to find them boxed up at the back of the cupboard with the rest of your sad little life. It’s cold again today and I’ve spent the last hour in bed, out of boredom rather than any other reason. Everything aches, I’ve eaten badly again today. I cannot seem to take care of myself, I get angry with myself for not taking care of myself, for not nurturing myself, for not being kind to myself and then I blame those around for not taking care of me either. I feel in a chicken and egg situation; what came first my mental anguish or my physical breakdown; which one do I attend to first. As I sit writing this my husband is in the background, his mere presence is getting on my nerves, his breathing, his sighing, his inability to fucking understand what is going on with me!!! Yet it’s not his fault. All I can do is fight down the urge to lash out at him, so I ignore him and his breathing and sighing becomes louder and louder. FFS, he’s spent the last few hours in his ‘man-cave’ ignoring me, how can it be that as soon as I get up and move around he’s there asking, pleading “what’s wrong?”, “are you O.K?”. I swear if he asks what’s for dinner I might throw this ruddy computer at him. I am hoping writing this will help release frustration, will settle me down so I can pretend once again everything is OK. I can feel it dissipate a little, I no longer want to kill the man sitting on the sofa behind me. Although I swear if he speaks I may punch his face in. Five more minutes and I’ll be alright. The darkness will have passed and I’ll be back in the the dreary grey area of my life, which is manageable. Five more minutes is all I need…
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!
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.
What a strange week it has been. I’m on a more even keel with my husband following my rant last week. He’s still not perfect (neither am I) but I’ve managed to offload a lot of my frustration and angst here. No doubt things will settle for a few months before they start to build up again. It would seem my mental distress has now morphed into physical distress as I’ve not been feeling too well, not really poorly, just a bit under the weather. I think my body is rebelling against me. You see I’ve had a lot of abdominal discomfort, feeling bloated and full of trapped wind. I’ve also been feeling as if I’m coming down with something, all cold and achy. Now I’m not sure if this has to do with fibromyalgia, lipoedema or poor nutrition, all I know is I’ve been feeling really off this week and I can’t seem to shift this bloated feeling despite drinking hot lemon, ginger, ACV and honey. Added to this I’ve got some major paranoia about cancer going round in my head (due to the fact I’m a medical secretary in the oncology department of a large hospital) and all day I’m typing letters about bloated abdomens, ascites, discomfort etc. being symptoms of some cancers. (I need to get a new job were the focus is less doom-laden). Added to this is the constant feeling that I’ve failed in some way, failed because I am unable to control my desires when it comes to food; failed because I am unable to control my physical being through exercise.
I realise one of my main problems is my failure to accept I may have one or two debilitating conditions, which I am not responsible for or able to control; lipoedema and fibromyalgia. Somehow, despite diagnosis, I do not feel I have accepted these conditions. Is it because since diagnosis I’ve been left high and dry to manage them without much input from the medical profession? I was under the lymphoedema service for my lipoedema but was discharged recently because there is nothing more they can do for me; I can get my compression stockings on prescription from my GP. I’m told my lipoedema exists, but the problems I experience from it are no longer a priority for them, yet they have been the only ones who have acknowledged it. My GP hasn’t, and doesn’t seem to want to understand. Likewise, I was referred to a rheumatologist who diagnosed fibromyalgia and was summarily discharged back to my GP, with no care plan, advice or anything, merely the ability to request pain medication as and when required. Is it any wonder I’m confused, depressed and defeated. I am expected to deal with these conditions without any formal medical training and without any input from the medical profession. All I have at my disposal is information gleaned off the the internet or from books. Is it any wonder I am driving myself mad trying to figure the best way to manage my condition when I don’t know the first thing about it, or how to manage it. I feel let down by the NHS and its practitioners, whose salaries I contribute to.
Working in the NHS I see first hand how dysfunctional it is. Don’t get me wrong there are a lot a good people working really hard to provide a good service, the problem is there are too many numpties and the focus of the NHS is all wrong. For a long time the NHS has been hijacked by pharmaceutical companies and big business who have moved it from being a “comprehensive range of services, universal and free at the point of delivery for ordinary residents in the UK”; running it down, stripping it of all its assets, so it can be sold off for peanuts. There are too many managers in the NHS who have no understanding of health care and who are there, purely to feather their own nests, financially or politically. What is apparent is how stupid and near sighted they are, because when the NHS is sold off to private enterprise their jobs will be the first to go, because they are fucking shite at what they do! Anyone with a bit of nous will see them for what they are; a bunch of spivs, employed to do the dirty work for those who don’t want to get their hands dirty, i.e. the elite. The other problem I’ve seen, now I don’t know if this is particular to Birmingham or it is more widespread, but the incestuousness nature of the NHS, the sheer volume of nepotism that goes on, beggars belief. The amount to people who have risen through the ranks in a very short space of time and without qualification or experience is unbelievable. It’s no wonder money is draining out of the NHS, there is no-one in a true leadership position, there are too many jumped up little hitlers, who know fuck all, running the show.
Sometimes I welcome the idea of private ownership only to see the looks on those fucking idiots faces when they get shown the door. I do however, believe in the NHS, healthcare is not something that should be bought and sold, fundamental healthcare should be a human right. Equally, I think we need to be clearer on what type of free healthcare we nee; it should not be there to put right what went wrong in private healthcare, like botched up plastic surgery. Also, I don’t think it should offer fertility treatment, there are already too many people in the world, there must be a reason why some people are unable to reproduce spontaneously, and maybe there is a reason we shouldn’t encourage them (perhaps they produce more fuckwits!!). I also think we need to take a more holistic approach to healthcare, starting with nutrition. I also think its about time the food industry were made to clean up their act; I sometimes think they are in league with the pharmaceutical industry, one to get us sick and the other to provide the (so-called) cure. It seems us normal folk are paying over the odds for everything; we’re paying good money for shit food, good money for dodgy pharmaceuticals, good money to the state for services that sub-standard, verging on shit. Bloody-hell, I could go on. Basically, all I want is a healthcare system that when you’re ill, or struggling, there is someone willing and able to help. Where the necessary time is made available to discuss related issues and it is not limited to a 10 minute slot where you can only discuss one topic, then be shown the door. A healthcare system which listens rather than just dispenses quick remedies per an online guidebook, I could get that information from Google. There are some things in life that can’t be boiled down to cost efficiencies and healthcare is just one of those things. Healthcare should, under no circumstances, be commodified and those who are hungry to do so, like Richard Branson, should be euthanised…
I’m feeling a bit defeated by my life in general at the moment. Everything feels out of control; or should I say out of ‘my’ control. I am getting very little pleasure from my life just now, everything feels a bit of a struggle; health, job, relationship, home, family, friends etc. All of it is in a bit of a mess and I don’t know how to fix any of it and I’m all out of options. I’m not as physically active or as healthy as I’d like to be, whether its the lipoedema or fibromyalgia slowing me down; I don’t know. All I know is I am totally alone with all my shit, I have no friends, my family are spread out or estranged and my husband is so wrapped up in his own neurosis I can’t get any help from him. I feel totally conflicted in every aspect of my life. I hate my job but can’t think of what else I’d like to do; I want to be everything and nothing. The house is getting me down, it needs stuff doing to it, not necessarily the big stuff just the little everyday tidying and cleaning but I just can’t be bothered. I’ve been doing it for years, cleaning, hoovering etc. but its like a relentless bogeyman; keeps coming back, it never fucking ends. I can’t even write today as my mind is full of stuff. I’m unhappy, unfulfilled, unloved, undeserving, under-appreciated, unworthy. I’m sick of pretending, sick of saying the right thing, sick of being understanding, sick of putting others before me, sick of people taking the piss, sick of fucking everything and everyone…
I am 52 years old and I don’t know if I have ever really been in love, or have ever felt truly loved. I’ve been infatuated, besotted, been in love with the idea of being in love but I don’t think I’ve ever been in love. I tell my husband I love him but I don’t know anymore if that is true. I don’t know if it ever has been. We’ve been together for 15 years; we started out as friends and it sort of developed. I am jealous when I hear others talk about their husbands being ‘the love of their life’, I think I always wanted that but somehow it doesn’t seem to have materialised. My husband tells me he loves me, he tells me I’m his best (and only) friend, the only person in the world who understands him; but is he all that for me. There is no doubt he is my best friend, but only because there is no competition, since moving to Birmingham 20 years ago I’ve never really found a group of friends. I only see one other person and that is usually 2-3 times a year. Does he understand me; sometimes yes. Does he understand what I want; maybe. Does he understand what I need; no, fuck NO!!! I want to feel special, I want to feel loved, I want his undivided attention, I want him to know why I’m upset, I want him to be the strong one every now and then. I want him to take care of ME! I want him to take an interest in my life, my desires, my needs. I want him to do things for me, things he finds difficult, because he knows how much pleasure they will give me. I want him to look at me, properly and see the woman beneath the fat, beneath the hard, shouty exterior, beneath the aches and pains, beneath the pretence and realise I am just a scared. little girl. Scared to love him anymore while he still holds me at arms length because I’m scared of getting hurt, scared of giving anymore until I get something in return. Something that takes him out of his comfort zone, something that proves to me he is scared to but he is willing to push through the fear because together we can be strong. Fuck sake, I’m starting to sound like a romantic novel….
Basically, I want him to love me how I want to be loved…without compromise, without fear, without shame, without his fucking anxieties getting the better of him. I want him to realise that sometimes he has to put the effort in, sometimes even though he doesn’t feel good, happy, or in the mood… he just has to fucking do it. Do you realise in 15 years of being together he has never booked a table to take me for a meal, dressed up for the hell of it, surprised me with a weekend away, bought me a ridiculously expensive or infantile gift, surprised me at work by turning up to take me to lunch, brought me breakfast in bed, offered me a foot rub or back massage for the sheer hell of it. I could go on but in all honesty I don’t think it would make any difference. I have said all this to him in the past and it doesn’t make the slightest bit of difference. Occasionally I shout, scream, cry, go quiet and eventually let it go, move on and start another day until I feel worn down by my neglect again. I know I am not the most beautiful woman in the world, nor am I the most loving and I don’t think I automatically deserve these things just for being, but every day I try really hard, to be patient and understanding of his anxieties, his OCD, his agoraphobia; I take care of him by making sure he eats well, has clean clothes and a comfortable house. I do not make excessive monetary or DIY demands; I just want a little bit of attention. I want to know that he loves me and is willing to show it without having to ‘take a bullet for me’.
Its been a wee while since I last wrote. I was away in London at the weekend for a family get together, which was nice, although I always find being away from home a very anxious and tiring experience. I also get anxious about leaving our cats to fend for themselves. I know they will be OK for 1-2 nights as they’ve got a cat flap and can come and go as they please; we also fill electronic feeders so they’ve also got enough food to cover a couple of days. I just worry about them and I don’t really relax until I’ve taken a roll call when I get back.
Thankfully we both had booked annual leave days the Friday before and the Monday after so we could get organised before leaving and chill out a little when we got back. I’d managed to get a good deal on tickets as I’d booked them some time ago; I’d also booked an overnight stay in an hotel near Euston station. We were up early on the Saturday to catch our 08:50 train, we got to the station quite early only to find out our train had been cancelled. We didn’t worry too much as the next one was only 20 minutes later so it wouldn’t delay us too much. Unfortunately however, the seats I’d booked were no longer ours and the train was packed; we did however manage to find seats. The plan was to meet Dave’s parents at Euston and then go onto the Cutty Sark where we were meeting the rest of his family. It looked like a nice day but by the time we got to Greenwich it was pissing down. It was nice to see everyone and catch up but there was a lot of walking and standing around; it was quite tough on my poor wee feet and legs even though I had my compression stockings and Fitflops on. By the time we got back to our hotel at around 9:00pm, I could no longer walk. Getting up in the middle of the night to visit the bathroom was a nightmare ‘cos my feet were so painful; I know they could have been a lot worse if I’d had other shoes on, thank gawd for small mercy’s.
In the morning I’d recovered quite a bit but I was not up for hiking, thankfully we were heading home on the 11:50 train. When we got home and opened the front door the most horrendous smell slapped us in the face; we thought there would be a mountain of poo in the cat trays, but they seemed OK. We soon realised that one of the automatic feeders had not worked and all the food we’d left out had gone rotten in the heat and our poor little babies were starving. We fed them quickly, and thankfully they forgave us eventually, after some more feeds. I’m now on the lookout for new automatic feeders.
One thing I notice when I’m away from home is the food I eat tends to be a bit shit. I don’t always have time to hunt down the best options and therefore end up eating whats available, i.e. sandwiches and cake washed down by a lot of coffee. Also, I think there is something in my head which makes me think I’m on ‘holiday’ therefore, the normal eating rules don’t apply. I find myself wanting things I’m not usually bothered about, like crisps and biscuits. However, none of this helps with how I was feeling physically on the Sunday morning. I felt I’d been on a bender; I felt hungover. All the cells in my body felt jangly and exhausted. Also, I don’t think I drink enough water when I’m away and I think this has an effect on my cells.
The other thing that seems to happen when I eat badly is I become addicted to more of the same. When I got off the train at Birmingham, New Street I headed for Marks & Spencer to pick up something easy and quick for dinner (chicken tikka, rice and naan’), but I also felt compelled to buy more crips and biscuits; not just a couple but enough to last a few days. Talk about shooting yourself in the foot. I wonder sometimes if I will ever stop this destructive behaviour before I suffer a life changing heart attack, or similar. All I can do is each day is try to do better. Sometimes I wonder whether I have any control over how I look and feel anyway, maybe I am and feel exactly what as I am intended. What a Bastard!!
I think the best thing to do is move on, no point dwelling it the past. I had taken a quick look at my last post and realised I was in a bit of a dark place then; thankfully things are not quite so dark now. Its not all rosy in the garden though.
I’ve been trying to eat better, cut down on some of the rubbish. I find it difficult to be organised, especially in the morning, particularly on work days. I’ve got into the habit of taking spelt toast with peanut butter to eat later. Its easy to prepare and easy to transport. However, the last couple of days I’m not sure if its the toast, peanut butter, the coconut latte or my hot lemon drink but something has given me severe upper right flank pain radiating to my back. Stupidly I looked on google and I’m now convinced I’ve got pancreatitis. Despite what you may think that’s a lot better than what I thought it initially was – the big C. Actually, in all honesty I think I suffer, as many do, with health anxiety and I think this is heightened by my job as a medical secretary. In every specialty I’ve worked I recognise myself as having some of the symptoms of chronic disease. I’ve been working in oncology recently and typing those letters has got me all in a cancer-fluster. It would seem women of a certain age (i.e. my age and peri-, post- or menopausal) who develop symptoms of bloating, stomach distension, abdominal pain, intermittent bleeding etc. are automatically sent to the gynaecologists for further investigation. Biopsies follow, and before long they are diagnosed with some form cancer even though they are well, and all they had was a little polyp and a healthy lifestyle. Then its chemo or radiotherapy, or both and their symptoms, which were bugging them a little, become full-on cancer treating sickness.
I’m no medical professional but I do wonder whether the drug companies and companies with vested interest in health care are screwing us over. I believe the medical profession and the public are being held to ransom by the drug companies. Doctors are told how, when and what to treat within NICE guidelines (calling them NICE is the biggest irony) and the solution always seems to be drug-related and if they can’t cure it they’ll cut it out with surgery. There never seems to be a holistic solution, something which takes into account the person, their choices, lifestyle, background etc. Because of my struggle with weight, depression and recently diagnosed ailments of lipoedema and fibromyalgia, I have become increasingly interested in finding solutions which are more natural, herbal and organic. Unfortunately, there is a lot of information on the internet, some good, some bad and some downright crazy. Its very difficult sifting through it all trying to find the thing (s) that work for you.
The internet is were I found the idea of hot lemon drink with ACV, ginger and honey along with coconut oil pulling, LCHF and a number of other things. I’ve given them all a go, but I’m not convinced of their benefits for me. Is it because I’ve not tried them long enough or is it because I still continue with all the other rubbish. Do I need to become a lettuce eating, nut chewing, no meat, no dairy, no chocolate only vegetables and fruit-eating monster. Would that cure me of all my ills, will it prevent me from getting or having cancer, will it ease my symptoms from lipoedema and fibromyalgia? Have I got the will power and stamina to really, truly try it out? Do I have lipoedema and fibromyalgia? Are these conditions real or are they invented to lessen the mental suffering of people like me who are shit at dieting? As each day goes by it becomes more and more difficult to make any sense of anything, fake news and bullshit seem to be the order of the day, so what is real, what is fake? I thought I was fairly clever but I don’t know if I’d recognise bullshit anymore. Maybe hot lemon and ACV is bullshit!